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1
May, 2007 — Tucson
The call of a mourning dove is all it takes. Heard through closed windows, but as though in the next room, plaintive, chained to memories thought safely buried, it transports my mind instantly to other places and times. Alone. Morning. Mourning. The scent of spring in the desert trails behind, also unbidden. Memories of a youth spent with awkward care but now seemingly squandered, seep into me. My memories ride the song but then linger and shunt to other moments passed. The scent fades. The song is consumed by other chirps and clicks and whirs and moves away until lost to another day.
But I am caught. My mind rises to the crest of each memory as it flows within me, and then surfs along until the current weakens or fades or crashes into a submerged reef, and then I am swept back out to sea by an incessant flow of jumbled thoughts, only to be caught up again by another wave, powerless.
• • •
Most books of this sort follow the convention of beginning at the beginning. But perhaps because I often feel that my life is disjointed and plotless, or because I still cannot put the pieces of my life together in a meaningful sequence, or cannot construe the sequence they do form, I am forced to ignore convention. Blame the mourning dove. So I begin today, just a few months prior to my 60th birthday, a day I considered for some time to be D-Day: Death Day.
I’m not so sure now.
The life I was living was almost more than I could bear, full of fear and failure and depression. Fear and failure are still present, but the worst of it all, the depression that dogged me for over forty years, has finally been put away, locked in a box in my brain, over which I now stand guard, doing all in my power to keep it from being opened by any thing or thought or person. I spent decades fighting that demon, and I refuse to let it loose within me again.
The story of that battle weaves in and out of all the past forty years, defining, in large part, what and who I became. The final battle in which the black dog was finally overcome will be part of the story, mostly because it has occurred to me that there has been more than one impostor involved in my life: myself.
It could be that viewing myself as an impostor is merely a convenient construct; I suppose you must be the judge of that. Perhaps I only feel as though I’m an impostor because I’ve been an “over-achiever” for much of my life, or at least a clever subversive, changing the rules of games so that I could win. I first became aware of this proclivity when in high school, I think. Following a highly intelligent brother two years my senior through those years in school almost required me to subvert the system, since I was horrified at the prospect of not equaling his prowess and achievements. He was smart, so I would be clever, and I honed those skills into an artful science through the college years that followed.
April 26, 2007 - Journal Entry - Tucson
Time machines surround me. On any visit to Mary’s house, they surround me: pieces of our history together. They are mere objects of wood or leather or glass or metal, static to all else, but reaching out to me as strongly as the call of the mourning dove. Pieces of our past together, they become deep ocean swells that carry me again through the flow of the past toward an unknown shore.
• • •
I find it interesting that my brother became an actor and then a teacher, and I became a teacher and then an artist. He gave up the pursuit of wealth and travel and adventure in exchange for a modicum of stability, and for a family. I gave up stability and a family in exchange for the relatively unfettered life of an artist. As I watched his family grow and change over the years, I often wondered whether I might have made a bad choice, knowing that in the end, family trumps all else. But the die seemed cast years before, when we started down these disparate roads, and the choices were made with eyes open. If my life now is not as I would have wanted it to be, I cannot fault others, or even the exuberance of youth. They say that the most important line in a drawing is the first one; that it establishes the character, position, and relationships of all that follow. And so it is with our lives, which grow and mutate and search for unification and meaning based on the earliest decisions or compromises or attitudes we take. The branching universes of possibility are both wondrous and horrible to contemplate.
So this is a book built of bits and pieces. There are entries identified as “Time Node” that are written in the present tense because they are as real to me today as they were years or decades ago. Other entries, the actual foundations of the book, are excerpts from two weblogs I kept for a few years. Living With an Impostor entries are from a blog titled “Alzheimer’s: Living With an Impostor. My Life as an Alzheimer’s Caregiver”—that I started in May of 2004 and continued until November of 2006. Transmaniac entries are from a blog titled “My Life as a Transmaniac”—that I started at about the same time that I quit adding to the Living With an Impostor blog.
I have tried to weave these two stories together with commentary written in a manner that will help illuminate their convergence. I see them as though they are two separate universes, rippling curtains hung side-by-side, sometimes touching, melding, and at other times singularly distinct, though they are both a part of me. The larger universe, that of my more than 40-year battle with depression, is the stage upon which my life has played out. The smaller, that of my wife’s descent into dementia, also plays out upon that stage, but extends further, to the time of now, when the depression has finally ended, or at least been cowed into submission.
I chose to use excerpts from those two weblogs because they most clearly describe my thoughts and feelings at the time they were written. If at times they seem more to cloud than to clarify, it is only because the mind (or MY mind, at least) does not necessarily take linear tracks through time, especially when the brain hosting that mind is at times awash in powerful psychoactive drugs and at others free to seek its own level. So you will note that throughout the first half of the book, the excerpts are presented in an especially disconcerting non-linear way, my aim being to establish an overall context rather than a sequential biography. Further along, they come back into a more linear format so as to present more of the actual flavor of my life during those periods.
August 18, 1977 - Time Node - Tucson
My 30th birthday. I have lived with a woman some five years my junior for almost as many years. Recently I had purchased a parcel of land, about five acres, crossing from one valley to another across a hilltop in northeast Tucson, far from the city. I hope to build a home on this land, and today I have created some subterfuge (a picnic, I think) and driven us out to the property in the late afternoon. My courage finally in command, I put my hands on her shoulders and turn her to face me. “Will you marry me?” I ask. A pregnant pause, unexpected. “I don’t see why not,” she replies. Uncharacteristic ambivalence; unexpectedly obtuse. There is a hint of approaching monsoon rain in the air.
• • •
In the early 1960’s, while in high school, it was easy for all to see that I was different. I excelled in my studies but had few friends. I usually found a place to sit alone during lunch, separating myself from other students rather than face the humiliation of being separated from them by command or neglect or indifference. I had discovered that my status was that of a useful tool. Schoolmates called me “The Walking Dictionary,” and knew that though socially clueless, I made a great lab- or project-partner in any class. I learned many things during my high school years, but the most important had not to do with any subject or course. I learned that I was creative, that I could alter my life experience through this creativity, and that I existed on an intellectually and creatively different level than others.
I hated life and in some ways longed to just be normal. But there were strong currents moving within me, leading not outward, but inward to my core. I had begun to define myself. And I had become aware that I was responsible for what I was and was yet to become. I read poetry. I read Shakespeare. I read books on the occult and on art and on history. I read Something Wicked This Way Comes by Ray Bradbury, and felt a kinship with the magical world of Cougar and Dark’s Phantasmagorical Pandemonium Shadow Show. I recall writing about witches with their eyelids sewn shut with spider webs.
One of my teachers took note, and I was sent to be questioned by a psychiatrist. Diagnosis: severe clinical depression. I was seventeen years old. I thought the psychiatrist was crazy. I thought the world was crazy and that I was apparently the only person who knew.
As I now, at the age of 59-plus, read William Styron's Darkness Visible, I think back to those horrible years of my youth when, at the most tender and suffering age of sixteen or so I began a lifelong struggle with depression. I had purchased a copy of Jean-Paul Sartre's Nausea (and I recall quite clearly that the paperback with the then-popular black and white, grainy photograph on the cover cost an astounding $2.95—a small fortune for me in those years). Who could ignore the shouted "IS GOD DEAD?" on the cover of Time Magazine in 1966? Well, God had died for me just a year or two earlier, or at least decided in His wisdom not to bother to speak with me in any comprehensible form and therefore became, in my mind, a conceptual irrelevance.
And I've been thinking about Styron's attempt to describe this disease of the mind and spirit in terms that might be apprehended by someone who has not suffered a moment of it. I think of the stupefying numbness and dread which can daily smother me like blankets of coarse wool-like waves breaking over and pulling me under. I think about the fear of having lived all this life for nothing, as Camus’ stranger entangles himself in darkness.
I think about suicide and about cancer, and I realize that of all the horrible afflictions wrought upon us by chance or mischance as they battle for supremacy, each most horrible to their sufferers, some are anointed with grandeur, nevertheless. To die from cancer is to be writ large among the stars, and even to be plotted as a circumferential line drawn by the mind upon the face of the Earth. Imagine it: a disease so awful that it has taken the name of an entire breadth of space through which, by line of sight and a moment in time, the planets wander.
But depression? Ha! No stars herald my life's passageway, though rivers of tears may fall. It is a somnolent disease, largely unplumbed as the ocean floor, and as near dead. Melancholia would suffice, perhaps, and may yet assume sway as time and writers' proclivities are overwhelmed by future history. Certainly it is a much more mellifluous, if not accurately descriptive word. But depression? Where in the heavens or on Earth do you see it wheel? The attempt to describe depression (such an ugly little word) to someone who has never felt its breath on his neck is like talking of God to an ant busy about its ant business. There is no sense in it, no possibility of even a glimmer of understanding. Nor need for it.
And with these thoughts swirling through my own demented brain, I read for the first time, Baudelaire's wonderful words: "I have felt the wind of the wing of madness pass over me."
He knew. I feel that wind almost daily. He knew, and a disease that can be embodied in those words deserves more than the whispered, almost dismissively clinical, depression.
I feel worthless enough. To be branded (the whispers and nods, again) "depressed" is an insult I will likely carry to my grave. You know, that one over there just beyond the hill. I've been working at it in fits and starts for years, but am almost done. And to have dug my own grave is an act of human grand passion and reasonableness, I think, not something to be denied or excused as though I am an inconsiderate clod.
Loneliness was a constant in my years from high school on through my early twenties. It seemed almost an inescapable part of me, and became such familiar territory that I staked my own claim early on, in self-defense. If I held myself apart from others, I reasoned, I could not be dismissed or abandoned by them. It became a badge of honor. Oh, I did have friends, but not many. Those from high school drifted away, for the most part, when I went away to college. Those from college followed into private lives of which I would come to know nothing after my degrees were achieved. And though I had felt a deep longing for romantic love, I remained awkward around girls and women until I discovered how intellect and awkwardness could be combined into a relatively attractive package.
Some months after my proposal on the hill, we married. A year and seven months later, to the day, she was gone. The clock I had purchased on our first anniversary stopped that same day. I pled with her. I tried to reason with her. I went to counseling with her to save our marriage. But I failed. Or we failed. Truth be told, the counseling was a waste of time and money; she had already decided to leave. Finally, I asked, “Why did you agree to marry me?” There was no pause. “I couldn’t think of any good reason not to,” she said. “I don’t love you any more.” I do not know now, nor will I likely ever know whether she ever really loved me at all. But I have come to realize that this was a seminal moment in my life, not only because it was a bold dark line in the drawing that was to become me, but because it put the lie to a concept I had constructed and cherished over the years: that love was forever.
“Well, this is certainly another new low point for me. I've been enveloped by a massive apathy. I have no dreams, no passions, and no consuming interests. I've doubled my Prozac intake, but still just drift through each day, finding it difficult to get anything accomplished. I've found that it doesn't much matter to me where I am, but who I am with, that makes the difference in my life now, and I find that (much as you) I am with someone who just sucks the life out of me. I think that being back in Tucson will probably be good for me in that there will be more opportunity for interaction with thoughtful, creative people, and this watery paradise has some ugliness underneath that I'll enjoy being away from. Today was spectacular, but all I did was stay inside and read and sleep, as I do most days, now.
“I don't know what will happen when I'm alone here, but unless the ennui diminishes, I expect that it'll just be more of the same. I've thought about just leaving, somehow, and starting over, and letting Mary's daughters tend to her. Give her all the money and just go somewhere and live alone and try to find something that I think is worth living for. Right now, the outlook is grim.
“Anyhow, the offer of a visit up north to Pinetop was immediately appealing, and your offer to assist in Tucson much appreciated. After all these years of dealing with depression, and all the pills and hope, to find myself back in the bottom of that well again is really disheartening.
“Mary calls this return to Tucson "our last adventure," but I think that my last adventure has already been had, and all that lies ahead is meaningless crap. I find that, in the end, I don't have my father's fortitude or ability to absorb the pain of living with a wife who’s become a stranger, and I consider that a personal failure. I see my life as having been lived with honor, if not always with grace, and that those philosophical ruminations that began in my teenage years continue today, just as I feared they would. And I marvel at how people can live as though life actually meant something.
“Ah, well. Another day gone. I'll read for a bit if I can, then sleep for a few hours. Will likely be up again by midnight as one meaningless day melds into another.
“Sorry to sound so down, but I am, and there doesn't seem to be a damned thing I can do about it. Just trying to weather the storm until my options change, as surely they must.”
• • •
Concepts such as “forever” are almost always problematic. In the case of the idea that love is forever, simple things like the average human life span are ignored, so that the statement becomes a powerful but meaningless romantic flourish. Nevertheless, the level of constancy expressed indicates at the very least an important ideal, and it is just these kinds of ideals that have conspired to define my concept of what it means to be a good man.
Somewhere along the way from my first awakening to reason, I began to construct what I hoped would be an internally consistent ideal of what it meant for me to be human. This seemed to me to be the ultimate power, and a requisite part of self-actualization. Years before my first wife left me, the idea that love should be forever had become an operative part of my attempt to be a good man, in spite of the hard realities of life. And therein lay the great lie, now exposed by things apparently beyond my control. If for a good man, love was forever, and if that love was found to be unreciprocated, or even worse, unwanted, how was I to survive? Could I let that poetic, essential part of my being wither into dust, and continue to live? Would I modify my ideal, or would I hold tight and carry it to my grave? Was it even a matter of choice? The horror of having to face this stark choice was palpable.
At about the same time as my marriage proposal on my 30th birthday, I was introduced to the wonders of cocaine. Not normally attracted to the recreational use of drugs, I had read numerous reports of the growing popularity of the substance and studies that seemed to indicate that it was not physically addicting. So when the opportunity suddenly arose for me to sample its pleasures, and with no intention or means to acquire it on my own, I did not hesitate. And it was wonderful. It seemed to unshackle me from doubt and inhibition. It fed the fires of my creativity. It threw a smothering blanket fully across my aching, daily depression. I recall having the thought, that very first night, that if I were ever to have a drug of choice, this would be it.
And soon I wanted more. Not only that, but I figured out how to get more. And I did get more. My use of the drug increased over many months, and by the time my wife left, I was addicted. I didn’t hide the fact from her, and I continue to this day to think my use of it must have contributed to her dissatisfaction with our marriage. Some years before, when I had asked her to help me quit smoking, she refused, so I should probably have guessed that she’d also offer me no support in any attempt to quit using cocaine. My use of the drug nearly killed me, but it also kept me alive, my only defense against a killing depression let loose by my realization that if I were to survive the loss of love, I must alter my ideal of what it meant to be a good man. I could no longer believe that the concept of love being forever was part of that equation.
I painted a double portrait of the two of us some time after she left. Both our faces were in profile, facing away from each other. And between the two of us I painted a disintegrating bubble as a personally powerful symbol of the loss I felt. I can still see it in my mind’s eye. The bubble was in the process of thinning to the point of showing its refracted rainbows of color, with some areas so thin that they appeared to be holes. I titled the work “Double Singularity” as a private play on words and meaning—not only a testament to the single persons we had again become, but also as a somewhat obtuse comment on the nature of things physical, a double singularity being a self-contradictory impossibility. I even used the painting as an ad in Art News, a slick, nationally distributed magazine in which I was running a series of full-page ads at the time. I think I wanted to leave some mark, even though it is an inscrutable code to everyone but me, noting that a personal tragedy had occurred in my life. I’m sure that many thousands saw that ad. Some may have glanced at the title of the painting and knit their brows. I’m sure that no one understood. I don’t know what happened to the painting, though I know I didn’t sell it. Like so many things that have been at one moment or another a meaningful part of my life, it is now lost.
Those months of addiction saw my weight drop to only 109 pounds; shirtless, I looked like a starving refugee. I became frightened, delusional, and paranoid. I wanted to stop, but couldn’t. I was alone. I was desperate. I hated what I had become. I was killing myself and seemed powerless to change, even though I knew what was happening. I purchased and read a massive textbook on depression, and could see that my cocaine use had chemically altered my brain as I attempted to hold depression in check. I understood, but I could not change.
Finally, in desperation, I started seeing a psychiatrist and was treated with imipramine and senseless counseling. But the self-loathing I felt daily was untouched, and I gradually came to believe that I would never save myself. I continued using cocaine, trading sanity for increasingly short periods of self-abusive pleasure.
Summer, 1980 - Time Node - Tucson
I’ve been awake for at least 48 hours. Night falls across the desert, and details of the land between my studio window and the mountains to the north slowly dissolve into darkness. I can see lights there at the bare edge of perception, ghostly, moving. At first only a few, then more and more, the lights spread across the darkness where I know the foothills must be. They seemed to be moving toward me, slowly, though I cannot be sure. I stare at them until uncertain that they are real. But I sense danger. Terrifying danger. I tell myself that the lights are not there. Then I tell myself that they are flashlights in the hands of college kids involved in some prank or rite of passage. They seem to move toward each other, but also across the desert ever closer toward me, and I am afraid. I watch them for hours. There seem to be fewer now, but closer still. There is a soft glow in the sky to the east: morning comes. I try to sleep and fail. Detail begins to assert itself again in the landscape, and I can no longer see the lights. But I hear something, now, on the roof. Government agents. Spirits incarnate. Dangerous. They are on the roof and want to kill me. I grab a knife and stand, back to wall, near the place where I am certain they will enter. There are more, now. They are stealthy and dangerous and I can hear their furtive footsteps as they prepare. I am determined to fight, to die. Now, no sounds. They wait. No sounds. I ease open the door, knife in hand, and listen. No sound but a mourning dove. The lights have gone. The sounds have gone. No one waits on the roof. A new day has come. The mourning dove calls once more.
• • •
Then someone saved me: Mary. Though I had lost sight of the good things within me, Mary saw them still, and her love allowed me to see them as well. We lived together for almost five years before marrying on March 29, 1985. We met because I was desperate. After my divorce, addicted to cocaine, disconsolate, I was above all else lonely: desperately lonely. I had taken to announcing this fact to complete strangers. I’d walk up to someone and say: “You don’t know me, but my name is Lawrence Lee and I’m an artist, and I really am a good person and I’m desperately lonely. Do you know anyone?” I know it sounds absurd, but this is actually what I did. And one day, a man I didn’t know said, “Yes.” The person he knew was Mary Wyant, and surprisingly, I had already met her. Her elder daughter had been a student of mine at the alternative high school at which I had taught prior to 1979. I had met her mother, Mary, during some parent-teacher night at the school, but had only a vague recollection of the evening. After about a week’s procrastination on my part, I called Mary and we had our first and only date. She used to say that when she saw me walk into the restaurant she breathed a sigh of relief and thought “Finally!” We spent that night together, and then again two nights later, and afterwards we were all but inseparable. We split our time together between her apartment in a downtown high-rise and my house on the hill, but finally decided to join forces. She moved into the house on the hill. We were both anxious about the arrangement, I think, but knew there was no going back when we melded our two rather substantial collections of books into one large bookcase. Oh, there were trials and stutters as well as great leaps of faith, but we survived. She was nine years my senior, but I didn’t care, and neither, apparently, did she. I think that we had a sense that we were each half of a key which, when made whole, could unlock any door. We spent more time together during our first five years than do most married couples in a lifetime.
Saturday, December 03, 2005 - Living With an Impostor - Tucson
Divorce?
A man and a woman are at a watering hole that has gone bad. The woman is already too sick to walk. The man can probably make it to the next watering hole safely if he leaves now. If he carries the woman, they will both die. If he stays with her, they will both die. The man loves the woman and she loves him. Neither the man nor the woman believes in miracles or the power of prayer, but they do know the realities of madness and thirst. The man and woman will be lonely without each other, and full of guilt, deserved or not. What should they do?
• • •
People said we were soul mates. I never did understand just what that meant. I do know that we were like two interlocking pieces of a puzzle that seemed to fit together perfectly. We enjoyed each other’s company immensely and were constantly together after we met. I enjoyed her maturity, intellect, creativity, and sense of style. But mostly, I enjoyed knowing that she could see the good in me. I used cocaine only once after we met. I told her about it, and she said that we both had sufficient baggage to carry into the relationship without bringing that along. So I quit. I dreamed about it for five years, but I never touched it again. And that was because of Mary. I wouldn’t save myself for myself, but I would save myself for her, or, rather, for us—for the whole we became and for the prospect of a loving future together.
Sunday, December 04, 2005 - Living With an Impostor - Tucson
Who Cares?
That's what I've been thinking about. What do I care about caring? What do I care about who thinks what of me? I'll always care about what I do and how that conforms to the guides laid out for me by my parents, my studies, and my thoughts. And I'll always resent it that the woman I married will never remember what we were when we were our best together. There will just be little bits of our souls decorating a few walls, and soon they will be gone, too. Otherwise, all that matter are few. My brother, perhaps, because he is all I have left. My stepdaughters, perhaps, because my failures become their burden, and I would not have had it that way. The grandchildren are still too young to understand. I do care about them, even though none of my blood, thankfully, runs in their veins. As for the rest, I really don't care. Oh, some of you have tried to understand, but it was hopeless. Some tried to ignore us, and I don't blame you. A few of you tried to help, but I wouldn't let you. Some pretended to understand, but that was the most unkind cut of all.
So, I thought that I'd face death with a loving partner. Now, no way. That moment is gone. And I will be alone after all, as I always knew I would be. It doesn't really matter, though, and I suppose that this is what I resent most of all. None of it ever has mattered and none of it ever will. Fade to black. (Shouts in the distance, and a gunshot. Then, from stage right, quiet, motherly, caring laughter, slowly growing into something else....)
There will now be a brief intermission as the cast writes the final act.
Huh?
What's been happening all this time? Well, you guessed it. Things have gotten worse. And I have gotten no better. So hang on, kiddies, because this is shaping up to be the ride of my sife! Sife?? Wife? No, no,no...LIFE. THE RIDE OF MY LIFE. MY! LIFE!
• • •
As Mary’s condition continued its slow thievery of her mind, my depression had grown, and I had become an anathema to her. I was the enemy. I had failed to cure her. She didn’t want me around, and one afternoon, she said so; she wanted me to leave. So, in October of 2005, I moved out of the condo and into a small semi-commercial studio space with a cramped loft that would accommodate an inflatable mattress and little else. At around the same time, I started to see a psychiatrist again, in hopes of finding a new line of attack against my worsening depression.
Once moved in, I rarely left this space. I had nowhere to go. I was beaten down by feelings of failure and of guilt. And of fear. My anxiety level was higher than I had ever known. I started taking a variety of anti-depressant drugs that were thought to work on different chemistries in my brain than those I’d used for so many years before. By that time I had purchased a house in which Mary could live and be cared for by her younger daughter, Rebecca. Mary and Rebecca moved into the house and I moved back into the condo until it was sold that summer. Then I moved into a small rental within easy walking distance of their house. I lived in the rental for almost a year before moving in with them.
Sunday, December 04, 2005 - Living With an Impostor - Tucson
The Assassin
Well, you see, everything is falling apart, now. I'm living and working in a 500 square foot loft, just a step or two up from what I might call a hovel. Could no longer take the madness 24/7.
But now I'm trying to find a reason for living.
Nothing seems to make a lot of sense. I guess I'm still depressed, in spite of all the anti-depressant drugs. Thought about buying a sailboat and running away to the tropics. Might be able to afford it after divorce, but would have to do charters to make money and therefore deal with obnoxious and scrofulous alcoholics. Besides, I get seasick. And, wonder of wonders, Belize, where I have a permit to live, I have found to be a Fascist State on the brink of financial collapse. So, just pay docking or anchorage fees and stay away from the madness. Fight the elements rather than this emotional pain.
But I thought I might actually do some good by training to become an assassin. I'd love to be the guy that measures out bloody justice to scofflaws like O.J. and members of the Great Clinton Pardon Party. Silenced .22 to the head at close range seems to be the ticket. Maybe I could build one into a TV camera and get Hugo Chavez?
First, though, I'm going to give Wild Turkey another shot at rearranging things for me. Cheap medicine, all considered. Just wish it tasted better. I'll treat hangovers with more.
The lorazepam I'm taking makes it hard to speeel. Snf zi Leave words out, too.
I think that the feeling of rightness about being with Mary held my depression at bay for years. And I thought I knew the earmarks of depression so intimately that I’d recognize it quickly if it ever attacked again. There were ups and downs as with any life, but we were so busy being artists and being a couple in our eyes and the eyes of others, that things seemed OK: normal, even. But looking back now from the perspective of a quarter-century, I see that my depression never really left. It was overwhelmed by love, but still there, like a dormant spore, ready to grow and multiply within me at the first opportunity, ready to consume me.
That's not really what this entry is about, but I am rather getting to the sharp end of things. A few days ago, my shrink suggested that I double my dose of Lexapro in order to stop the daily bouts of tears. Then she apparently left town, and I was left with an inadequate supply. I discovered last night that even double is insufficient, since I was crying like a babe again and gobbling down twosies and threesies of lorazepam like an alcoholic tossing back shots to drown the misery. Booze is cheaper; I just wish it didn't taste so bad, but maybe I'll try that, now.
All these drugs I'm taking do not, after all, seem to have helped much, though they do apparently cause a momentary amnesia... enough so that I forget how much they are costing me.
So, today I'm starting to back off of everything. I’ve calculated the half-lives of all the medications and have a good idea of how long it will take for each to be out of my body, and figure I'll be free of them by the time my doctor returns from her jaunt.
I'm feeling of ill temper today (no, it is not the lack of an extra dollop of Cymbalta or lorazepam) so I plan to focus most of my next entry on telling a few truths that must be told by someone. I'll insult everyone, living and dead. Maybe that will be fun. So stay tuned girls and boys. Might as well have some verbal fun while I'm dancing on the sharp end.
Mary loved to create and then recreate her environment, especially our home. She would wave her hands and say, “Make that wall go away!” And it would be done. Oh, the money we spent on remodeling! The house built on that desert hilltop in northeast Tucson began as a relatively modest one bedroom, two bath, two studio (one for me and another for my ex-wife) home comprising some 3,000 square feet. It ended up as a one bedroom, four bathroom quasi-mansion with an attached 1,600 square foot studio totaling something over 5,200 square feet. By the time we left it, as I recall, there were over thirty exterior ten-light French doors. During and after my divorce from my first wife, I had come to hate the place. It was full of sad, even horrible memories of pain and loneliness and cocaine and depression. I had seen the sun rise too many times from its many windows after all-night cocaine binges. But by the time Mary and I left, I loved it. Mary had made it into a wonderful, welcoming, comfortable home.
For years, she had talked about “getting some land somewhere” —and I was always reluctant. Nevertheless, I did my best to humor her, and we made a number of forays around other, more rural areas in southern Arizona: Benson, Dragoon, Sonoita, Lochiel.
Summer, 1989 - Time Node - Sonoita, Arizona
They are working on the road just north of Sonoita. A large oak stands just off the highway to the east, and it casts a cooling shadow across the road where the flagman has us stop. A friend and collector of western art has agreed to show us around. He does, and we are not much impressed with the area, because it is so open and exposed, though I know that if Mary holds true to form she’ll suggest that we buy something anyway. We finish the tour by mid-afternoon and I, quite uncharacteristically, suggest that we drive on down to Patagonia, another small town on the way to Nogales at the Mexican border. As we enter the town, I see a sign pointing south, through the Harshaw Mountains, and the name Lochiel. Again, uncharacteristically, I suggest that we drive on down to see what is there. The drive takes us through beautiful mountain passes, past an old graveyard and abandoned mining claims, and finally into a broad, almost park-like valley. Lochiel turns out to be a loose association of old buildings, including one charming, long-abandoned one room schoolhouse-and a FOR SALE sign. We stop and copy down the realtor’s phone number and continue east into the San Rafael valley, quickly becoming lost. The sun is going down, its golden light spilling across the grasslands through which we drive, so that the world seems ablaze with its glory. I say to Mary “Well, at least we’re lost in God’s country.” The few road markers we find seem designed to confound interlopers, with unrecognizable names and arrows pointing in impossible directions. Just before dark, we make our way back to Sonoita from the east, and then continue home to the grand house on the hill.
• • •
Our property-hunting trips were based on the idea that Mary wanted a little bit of land, five acres or less, on which we might one day build a weekend or summer getaway. I was never enthusiastic about the idea, but Mary was relentless. She could talk herself into wanting to make an offer on properties that were simply hideous. One parcel we walked was a flat-as-a-pancake lot south of Dragoon, covered in low scrub. From the center of one five acre parcel, you could easily see a man standing in the middle of the adjoining lot of similar size. Worse than that, however, was the light from a strobe flashing atop a power plant smokestack several miles away. On an overcast night, that strobe would light up the ghostly land in maddeningly regular flashes brighter than a full moon. Mary wanted to make an offer, but I somehow (cleverly, I suppose) talked her out of it.
Mary’s real dream, though, was Mexico. We often vacationed in Cabo San Lucas, and I could always tell that she wished she had a house there. I also knew that we couldn’t afford one near the water, which is where she wanted to be. But her dream became mine, and I wished that I could someday build her a house on the edge of an ocean.
Wednesday, January 05, 2005 -Living With an Impostor - Tucson
Time to shed a little light on the Impostor
I've been with my wife for about twenty-five years, now, and have gotten to know her well: where and what she likes to eat, what she likes to buy, what kind of movies she likes, her sense of style; all that you would imagine a quarter-century of living and working together would reveal. These characteristics—the little things to which a partner becomes accustomed—became small parts of the code that defined her in my mind.
But now, I'm finding more and more that her dementia is tampering with this code. Little things. How she responds to situations or words or touches. The things she seems to care about. The things that make her happy or sad or frustrated or mad. She is not now the woman that I married all those years ago.
And it is more than a simple drifting apart, though there is some of that, too. The parts of her that used to bring me comfort are now largely gone, and the changes frighten me. I am frightened of this woman with whom I am married. Not fear of physical harm, but fear that all we knew about each other is gone. And I do not like this woman, this transmogrification, this evil, angry, hostile, demanding thing that is now my life partner. And she is only 65, and in very good health other than the damned dementia. I am now 57, and expect to predecease her. I don't want to live the next twenty years this way, dreading the morning. Dreading the day. Dreading even more the restless evenings and sleepless nights.
I remind myself that this woman is no longer the woman I married; no longer the woman I loved even a few years ago. And that scares the hell out of me.
Oh, and she sees the changes, too. And she hates what she has become. She hates being angry and unhappy and hopeless. She has looked to me for healing, or for comfort at least. I have given all that I have. But we both know, now, that there will be no cure. We know that things will get worse. We can clearly see the road ahead and do not want to go there. But each moment of now crumbles beneath us and forces us onward into that chamber of horrors from which there is no return.
“Man, 87, Charged With Beating Ailing Wife.”
nbc6.net - News - Man, 87, Charged With Beating Ailing Wife: "An 87-year-old man was arrested on charges he beat his ailing wife in the head with a wood baton."
Wednesday, January 05, 2005 -Living With an Impostor - Tucson
The Truth About Butterflies
Since few are likely to read this, and since I am struggling to make sense of things for myself, I've decided to be brutal.
I have looked around for other blogs relating to Alzheimer’s, but with little success. I guess it is too personal. The blogs I did find were either clinical, or were composed by persons suffering the disease themselves, not someone on the outside (inside).
This may be because we all suffer not only a sense of isolation, but fear, panic, regret, guilt, hurt, and powerlessness. For some, in support groups, which I have thus far avoided, perhaps there is some calming sense of not being in it alone. But knowing that others are feeling the same things is, for me at least, not particularly therapeutic. Tricks and techniques to deal with particular circumstances and feelings seem to me nothing more than a local anesthetic: the fundamental questions and pain remain, to be dealt with on an incontrovertibly individual and painfully personal basis.
Wednesday, January 05, 2005 -Living With an Impostor - Tucson
Dreaming Of The Sea
Now dreaming of buying a thirty-foot Catamaran and learning to sail the Caribbean. Little hope, actually, and a guilty pleasure, but it can fill the empty holes of hours. I thought I'd never want to return to the islands, but apparently not. I wonder if I'm just imagining anywhere but here.
The problem is the people, of course. I need intelligent and creative talk about important things, as important as anything may actually be.
• • •
We ended up buying 43 acres in a narrow valley called Dry Canyon, almost exactly halfway between Sonoita and Patagonia. A purchase of such magnitude meant that we’d have to sell the house on the hill in Tucson and move our lives from city to country, but that seemed an appropriate choice to me because I felt a powerful need to make some massive changes in my life. Though I did not recognize it at the time, it is now clear to me that at the root of this feeling was my old nemesis depression, come a-calling in its insidious, stealthy cloak of anger.
Well, no art yesterday, since I spent most of the day just trying to survive an onslaught of philosophical questions I was aiming at myself, the essence being that I am really tired of being me and would like a vacation from myself.
No pills today other than the probability of lorazepam to chase the anxiety, but it has occurred to me that I may have all this while been trying to treat the wrong disease. My wife was first diagnosed five or six years ago as having Alzheimer's, and it has been a battle ever since, so perhaps this is some form of unclassified PTSD (Post-Traumatic Stress Disorder), but without the P. Traumatic Stress Disorder. Daily ongoing battles leading to higher than normal levels of stress and fight-or-flight imperatives which force me toward sleep to escape, and tears when I cannot.
So after brunch with my brother this morning, I'll be trying to educate myself along those lines, so that I'll be prepared for what may well be my final meeting with the psychiatrist in a few days.
Mary and I gave away, or threw away, what must have been three quarters of what we owned in order to make this relocation to the “country” possible. As most people discover when they set about pruning back the detritus of things acquired over a significant number of years, we found the process to be both disturbing and cathartic. But Mary’s vision of the house we would build in Dry Canyon was typically unique, and called for not only new things, such as furniture, but also new ways of living. Our new home was to be a clear-span rectangle of some forty feet by ninety feet, made of steel and glass, with a few partial, ruin-like walls of raw mud-and-straw adobe intruding through the glass in the entry and utility areas.
Her vision called for unique engineering, using rectangular cross section, steel posts and beams, custom steel trusses and a standing-seam, hip-shaped steel roof. The glass walls were made of eight-by-eight sliding doors, above which were fixed-pane glass panels four feet on a side, with one huge glass panel in the center of the east wall, itself surrounded by more sliders and fixed-pane panels. So the exterior walls were essentially glass twelve feet high around ninety percent of the house. It was her desire that someone standing outside the house could see completely through the space as though it were not there, and so it was. If we wished, all the sliding doors could be opened, and breezes flowing up the canyon could pass right through.
We rented a small space in Patagonia to use as a studio while construction was in progress, and were housed in a cozy guesthouse on the Rail-X Ranch just a few miles from Dry Canyon and the construction site. Construction began in January 1990, and some seven months later, sometime in July, we moved in.
January 6, 2005 - Living With an Impostor - Tucson
A New Kind Of Memory Test
A New Kind Of Memory Test: "Thelma Walton struggles to read because she has Alzheimer's Disease."
Experience
Experience is the thing you have left when everything else is gone. — Annon
Friday, January 07, 2005 - Living With an Impostor - Tucson
I've Seen That Again
Tonight, my wife and I were watching TV. She likes to watch movies—and she loves to watch the same ones over and over again. I try to watch with her, but I find more than two doses of How Stella Got Her Groove Back to be toxic. Before the movie, she had been watching something on the Food Network featuring one of the female chefs. She pointed at the woman on screen and said: "She's being little." I have no idea at all what she was talking about, and decided not to inquire. This is something that I've started to get used to. I have to be on guard at all times, sometimes asking for clarification and sometimes not. If I say the wrong thing, she will react unpredictably. If I say the right thing, she will usually not react at all.
Anyway, we watched the movie: a rambling and disjointed thing with great cast but little else. When it was over, I tried a bit of conversation, asking my wife how she liked the movie. "I've seen it again," she said. I asked: "Do you mean that you want to see it again?" "I've seen it again," she said once more. "Oh," I said. "You've seen it before?" "Yes," she said.
How can we talk about the future?
About Wit
I was just reading in another blog about someone's brilliant wit. Made me think about my own. That's one of the things that have gone missing in my relationship with my wife: she no longer laughs. She no longer understands my wit, just as she no longer understands how to use a thermostat or oven or DVD player.
We used to laugh a lot. There are some brief moments when we find laughter in our lives still, but the instances are few and far between. That makes me even more sad.
• • •
All Mary wanted to do was paint, and she often reminded me of that. She had been something of an artist in her earlier years, and after moving in with me in the house on the hill in Tucson, she once said that she’d never paint again, since I was so good at it. When we became a couple in 1980, Mary was teaching at the University of Arizona, having earned two degrees in interiors and housing from Wayne State University. Like me, she was a teacher, not a researcher, and when her department head insisted that she publish or leave her teaching post, she decided to leave. The attendant loss of income was a severe blow to our financial picture, but it didn’t take long for us to develop a new business doing “cast-paper” pieces of art that we marketed through a local wholesaler. As is the case with most such ventures, it was fun at first, but after just a few years, as the business grew and we had to hire contract help, the fun was overshadowed by the nuts-and-bolts grind of just keeping things running.
It was during this period that Mary started painting. Since we had always worked in the same studio space, she had picked up the technical basics of doing acrylic-on-canvas paintings by watching me work, and when she had completed six or so, I insisted that we take them to the gallery that was then showing my work. The gallery owner loved them, said he could sell them, and sell them he did: all of them, within a period of only a few weeks. So Mary’s career as a painter was off and running and she never looked back, soon completely abandoning the cast paper business altogether.
Sometime in 1985 - Time Node - Tucson
I’m driving, headed south into Tucson from our house on the hill. It is dusk. Suddenly, Mary says, “Did you see that?” A moment’s pause. “What?” I asked. “You mean you didn’t see it either?” she asked. Another moment’s pause. We laughed.
• • •
When the glass house was finished, Mary decided to turn one small corner into a painting station and work there; I continued to go in to the studio we were renting in Patagonia. There had been problems with the general contractor, who had over-spent by more $70,000 long before the structure was complete, and I had fired him. Then I spent months making sure that the subcontractors were paid, somehow, and finally getting a loan to complete the house. This was a real setback for me, because part of the plan for the move had been to be sufficiently frugal that we would no longer be burdened with a mortgage, which can be a deadly obligation for any self-employed artist. I was angry. I was depressed. Mary could see it, and I believe that’s one reason she decided to work in a separate space for the first time since we had been together. I couldn’t see my depression at all. I thought that somehow I had screwed things up, and that if I just made the right decisions, made the right changes, everything would be OK again. I was wrong.
I thought it might be a relief to take a break from my ranting about things political and incorrect, and talk a bit about my art.
Many people don't understand why, or simply do not believe it possible that I have quit painting. Oh, there may be a comeback some day, but don't hold your breath; I'll probably not live that long. But I HAVE done some really creative things of late, all of which are available as 11" x 11" gicleés on paper, or as 36" x 36" giclairunes: one-of-a-kind, only-one-in-the-universe, billions-and-billions-of-other-people-can't-own-it-because-you-do originals.
At any rate, I think I've been doing some highly creative and very "Lawrence Lee" stuff with the aid of this computer. The last few have been variations on a theme related to coyotes (the canine kind, not the human kind). In fact, I put the most recent one in the Shaman category because it is a skin walker. Yes, I have read Tony Hillerman, too. Have not chosen one to print it as a giclairune, yet, but I'm thinking that one of this series might be good for a miniature.
Time for bed again, and probably another morning after that.
• • •
Because of the problems with the general contractor, the mortgage, and the legal battle that ensued, I came to hate the glass house. Mary had done her typical, wonderful work making the interior a functional and beautiful space in which to live. I had designed a hyper-flexible system of computer-controlled functions for lighting and such, all accessed by remote controls spread around the living area. There was a long punch-list of things remaining to be done, but it, too, was flexible. But I hated the place. Anger consumed me. I withdrew into myself and spoke little. When I did speak, it was almost always about things that I saw as being elementally wrong with life, or the house, or me, or just the fact that we were living three miles down a dirt road off the highway in the middle of nowhere. Mary never argued. She never assigned blame. She did not break under the onslaught of my anger at life, but bent like a supple reed in the wind, and continued to paint. That was, after all, all she wanted to do. And painting, because it was so difficult and yet so necessary for our survival, had also become something that I hated.
Saturday, January 08, 2005 - Living With an Impostor - Tucson
Invisibility
Today, my wife told me, with apparent surprise, that there is brown in my mustache, but that my beard is white. "It has been that way for years," I said. "Really?" she said. "Yes," I said, "really."
I couldn't help but remember the day when my mother, also a victim of dementia, didn't recognize me at all.
But today seemed a happy day for Mary. She got to go shopping with both her daughters and have a lovely lunch in Nogales, Mexico. I am thankful for the days she is happy.
Saturday, January 08, 2005 - Living With an Impostor - Tucson
Viable Alzheimer's Treatments on the Horizon
Health News - Viable Alzheimer's Treatments on the Horizon: "Viable Alzheimer's Treatments on the Horizon"
This night of prescription drugs brought some relief from the feelings of anxiety that started an hour early today. They did nothing to keep the night sweats at bay. All told, they brought me an hour or so of restless sleep. The addition of some good pot brought me Double Stuff Oreos and Hamlet Act 2 Scene 3, as I recall. Anyway, the "To be or not" soliloquy. For reasons best left unexamined, it seemed imperative that it be said aloud, without error, and with feeling. In my hour of sleep, I was discovering a way to keep the sweats under control with pushpins. No adrenalin gnawing at the stomach now, so will probably do the full three hours next time my head hits the pillow. So, I've got an hour or two to kill. Perhaps I'll watch infomercials for a while. I can neither focus my eyes nor type efficiently in my current state.
January 09, 2005 - Living With an Impostor - Tucson
Mirror Images Reversed
I wonder what it would be like if my wife and I had both developed this dementia at about the same time. Would we speak in a special code? Would we counsel each other about the importance of remembering the day of the week? Would we even recognize our dementia, or perhaps just assume that the rest of the world had gone crazy?
January 10, 2005 - Living With an Impostor - Tucson
Last night, my wife was speaking in her sleep; not sentences ripe with meaning, but two or three clearly spoken words at a time. This period lasted for some 30 seconds before she again became silent. As I lay next to her, I wondered about the brain, and about the possibility of using hypnotherapy to help her brain shift gears, or to shift function to other areas undamaged by the disease.
It is now after 8:00 AM and I’m still half asleep, but the cleaning lady is here. I speak a little Spanish, so she assumes I'm a native speaker and launches off into these long sentences at double speed. I can't keep up, so try to pick out key words and return the right tone of "Humph!" or "Ohooo!" or nod or headshake. That only reinforces her, I think.
Anyhow, I'm now at half dose of all my meds and will be off by tomorrow, which will give me three days naked before the next/last visit to the psychiatrist next Wednesday.
Lots of drugs; lots of money. I may have been feeling better, but not $800 per month better, and I was headed toward suicide, so we'll see what happens now. My plan for today is to wake up a little, then write here a bit more in order to offend some more, then do a little art. Trying a change of continent. So, more later....
• • •
By 1994, depression was again eating away at the root of my being. I had been tipped into that dark pit, silently screaming, and saw no way out. I thought it must all be my fault. Then, in February or March, I was in the glass house, reading with only mild interest an article in Newsweek about the wonders of Prozac and other newly developed drugs targeting depression. As I recall, the article contained sidebars revealing the personal stories of some who had benefited from the drugs. Reading these snippets illuminating lives otherwise unknown to me, I suddenly recognized myself there. I was reading about me. I was seeing that I was neither alone nor to blame for my horrible state of mind. And I knew immediately, clearly, unequivocally, that there was hope.
March, 1994 - Time Node - Tucson
I took my first dose of Zoloft about 24 hours ago. It is early morning, and I’m sitting in the living area of the glass house, reading the last few pages of The Bridges of Madison County. During the past hour, I’ve felt something happening in my brain, like a soft, sweeping electric wave, gone in seconds, but palpably real. That isn’t supposed to be possible, I think. The brain may be full of neurons, but no nerve endings that would respond to things such as pressure or pain. I begin to cry. The book was written to make people do this, I think. I lift my eyes to the high desert grass and oaks outside the glass wall and see a drop of dew glistening on a leaf. It is singular, brilliant, poetic, and beautiful. I have not experienced such beauty in years. It is as though I’ve been reborn.
So far, the most I can say for not taking my meds is that my sleep issues have returned with a vengeance; night sweats and all the rest. Not fun. I do not feel particularly depressed, but the adrenalin kicks in at about 6:00 PM, so I have to start thinking about big doses of lorazepam again. I have discovered, much to my horror, that the meds were apparently not to blame for my acid reflux, which means that something else is wrong with my system, and I doubt that any MD is going to prescribe morphine drip for that malady.
What I want to tell them is "Treat the pain; and let the game continue." Sports pros can get most anything so that the play can go on. Maybe I should become a sports pro.
Probably a non-starter. Oh well. Mary was here today, and we were looking at some of my new digital images on the website. She thought the cows had only three legs. Symptomatic of her illness, I guess. But it did give me the idea that I should do a series of handicapped animals. That should offend lots of people. So keep your eyes peeled (open, that is) for a coyote in a wheelchair....
January 13, 2005 - Living With an Impostor - Tucson
A few days of calm.
Thankfully, a few days of calm since my wife started taking buspirone as an anti-anxiety medication. Whether this is cause and effect is anyone's guess, but I'm all for the respite. There are still memory lapses, of course, and an occasional flash of anger, but for the most part, she seems much more content now.
Mary and I had done quite a bit of traveling over the years, to various spots in Mexico, to New Zealand, Fiji, Southeast Alaska, England, and Scotland. Mary always picked the places and made the travel arrangements, and it was my job to see that there was enough money in the bank, which suited me just fine. Sometime in the late 1990’s, she arranged a trip to Ambergris Caye, a large island off the east coast of Belize; it was our first trip to the Caribbean. We stayed at a small resort just south of the only town on the island: San Pedro. We loved it.
Late in 1998, Mary announced to me that she wanted to take a grand adventure and travel back to Belize on her own for several months to paint. I didn’t want to be without her, but encouraged her without hesitation. It WOULD be a grand adventure, and if she wanted it, then so did I want it for her. Making things happen for Mary had become the most singularly important part of my life, my worldview, and my vision of myself as a good man.
January 17, 2005 - Living With an Impostor - Tucson
Medication
I discovered today that my wife has been taking double the dose of buspirone that I had told her to take. Turns out that she is taking the dosage printed on the pill bottle, which is fine. But this reminds me that I need to pay closer attention to her medications, since I have previously noted her occasional confusion about how much to take. Thankfully, she just studies the words on the bottle to refresh her memory, and this will be OK as long as she continues with that strategy. I worry, however, about what may happen when she no longer does so.
In fact, she has taken to carrying these pills with her, and has expressed some concern about the possibility of running out of them. I've assured her that I won't let this happen. And, for those of you who think I'm risking disaster by allowing her to self-administer these medications, I think that the risk is currently small, and that it is important for her to feel in control. I'm just reminding myself to be vigilant.
January 18, 2005 - Living With an Impostor - Tucson
Singing Along
Right now, my wife is in bed, listening to some CD or other, as has become part of her nightly routine. She was supposed to listen to poetry or audio books, but those apparently lost out to music.
The interesting thing is that she's singing along now. Not loudly, but singing along nevertheless. This is a good thing, and it squeezes my heart, making me want to smile, and reminding me that I do love her so.
• • •
Mary’s grand adventure turned into a disaster. She had arranged for housing on Caye Caulker, an island just south of Ambergris Caye. When she arrived, complete with large cargo boxes full of painting supplies and other things thought necessary for a stay of three months or so, she found the town to be full of drugged-out no-goods and her room to be full of bugs. Luckily, her younger daughter had made the trip down with her to help her get settled, and the two of them decided to leave as soon as possible. When they called to tell me about the adventure falling to pieces, I was probably as disappointed as Mary. And I wanted to somehow make it right. I logged on to the WWW and within hours had located a resort on Ambergris Caye, some seven miles north of San Pedro town. Upon Mary’s return to Patagonia and the glass house, I showed her what I had found, and we scheduled a trip there.
Little did I know that these actions would lead to another upheaval and dislocation in my life, but I knew I was doing the right thing for Mary, and that was all that really mattered to me.
January 19, 2005 - Living With an Impostor - Tucson
We Laughed!
My wife has this thing about hiccups. When she gets them, there seems to only be one remedy: I have to stand behind her and, with a finger in each ear canal, press hard enough to make the passageways air-tight, while she holds her nose and ever so slowly drinks a glass of water. Sometimes, two tries are necessary. It is so odd. Usually, this doesn't happen in public, but I've received more than one look of bewilderment when the need has arisen in one restaurant or another.
I mention this because it has become apparent, over the years, that this is my job. I've often joked with her that this duty is the only reason she keeps me around.
In addition, she likes to have her back scratched. Fingernails on bare skin. Nothing else will do.
Well, tonight, the impostor was gone. I could tell, because Mary (twice) came into my office and pulled up her shirt so that I could scratch her back. When I was finished, I said, "What would you do without me?" She laughed. I said, "I can see it now. Headline: Woman found dead, her back bleeding from rubbing against a wall. She apparently got the hiccups and could not recover." We both laughed. We laughed so hard that we were coughing and sputtering. And she hugged me. It was wonderful.
Phenserine
Medical World Communications: "[A] new drug, Phenserine, offers hope that soon it might be possible to slow the disease so much that patients might not seriously deteriorate for many years. If caught early and treated, Alzheimer's patients may be able to lead near-normal lives. Human trials are underway and the drug could be on the market within three years."
Sigh. Three years is such a long, long time from my current point of view.
I can't seem to get beyond the feeling that I'm just a tired old man with few friends and little love in his life. I work. I sleep or try to sleep. This depression doesn't feel like anything special; just one more day. Work, sleep, emptiness, tears at night, and sleep again. I'm so tired of this. So tired of trying to be something that I'm not now and never have been. I want it to be over. Just burn the script and forget it. I can't imagine the rest of my life being like this.
Now that I'm off the meds, things are little different. I'm happy to report no crying yesterday. The sleep issues have returned, but I rather expected them to. I've now got about a three-hour cycle, and awaken with night sweats and interesting geometric (color) shapes fading in and out of my visual field. A paranoid person might see them as threatening, but to me, it was more just a light show. After drying out a bit, they devolved into colorful squiggly lines and shapes, but now that I am up, they have all gone away somewhere. The sweats are the worst part. Without them, I could go right back to sleep.
I expect to tell the psychiatrist about this on Wednesday, but she'll likely exhibit only passing interest. I plan to go directly, as soon as possible, to ECT, which is the only thing I haven't tried save for MAOI inhibitors. I'll have more to say on all this when I’m a bit more awake.
Last night, worked on the definitive coyote, something I've wanted to do for years. Now I get to play with lines and colors myself. Headaches from caffeine withdrawal have been mild.
• • •
So Mary and I traveled back to Belize together. And I went prepared to purchase a condo at the resort we were going to. Being so far north of San Pedro town, it was reachable only by boat, but we loved the place and the people, and we were no strangers, now, to living rather off the beaten path. The deal was done, and my life began to swerve south. I had made a dream come true for Mary: a home on the water in a warm and sunny clime where she could do all she wanted to do without interruption—paint.
We planned to keep the glass house as our home, and travel to Belize when we wanted a break, and so it was for a while. But the more Mary was in Belize, the more she wanted to stay, and it was not long before I recognized the familiar writing on the wall. Mary wanted to move to Belize—lock, stock, and barrel.
Winter, 1998 - Time Node - Belize
I’ve been out reef fishing for snapper all afternoon and just returned to the condo. It is a second-story unit, with a broad wooden deck in front that wraps around four sides of the octagonal building. Before going inside, I take a moment to stand on the deck and look north. It is warm, but the cool breeze flowing in across the water is sensuous. There are storm clouds far out to sea. I watch as lightning ripples through the dark clouds, so distant that no sound of thunder reaches me. Mary wants to live here full-time, I think. I know. Why would I want to live anywhere else? I know that Belize will soon be our new home.
• • •
In the spring of 2001, Mary made one of her increasingly infrequent visits back to the glass house. We met a couple from Tucson for dinner at a nearby steak house. After the meal, the husband, a respected pulmonary surgeon in Tucson drew me aside and said he thought something was wrong with Mary, that she was “word searching” and should see a neurologist. I already knew that she had begun to have trouble finding words to communicate her thoughts, but it seemed to me a small problem indicative of little more than her self-imposed, relative social isolation on the island during my lengthy absences.
But I immediately made an appointment for her with a neurologist our friend had recommended, and over a period of several days, Mary underwent extensive testing. A week or so after the tests were completed, the neurologist called me.
Spring, 2001- Time Node - Patagonia, Arizona
I’ve been in the studio at the glass house all day. The phone rings and I answer. It is the neurologist. His report is relatively short. “We didn’t find any physical abnormalities that might account for Mary’s trouble with language. No sign of stroke or parasites or tumors or infectious disease. Nothing. So my best guess is that she has Alzheimer’s, or something like it.”
I can hardly speak, but thank him for the report and hang up. Alzheimer’s. But Mary is little more than sixty years old! How can this be? What do I say? How do I tell her? Do I tell her at all? I begin to cry, and soon am wracked by sobs. I don’t know what to do. Finally, I calm myself and dry my tears and do the only thing I can: I find Mary and tell her that the neurologist called and that the tests were all negative. I do not mention Alzheimer’s. I lie.
• • •
Things begin to sour at the condo just as the new millennium began. The clear title specified in our purchase contract had not been delivered to us, in spite of repeated and pointed requests. In the end our only option was to sue the resort owners. Not fun. Tensions increased as I spent months on end at the glass house, working for a sale of the property, while Mary remained in Belize. I decided that she may be in real danger there and told her to find us another place to live. By the winter of 2001, my battle in the courts of Belize was won, but the glass house remained unsold, and I’d mortgaged it to the hilt in order to purchase another place in Belize. So in early 2002 I took the only offer on the table and sold the glass house for a song, walking away with less than $15,000. I gave away a lot more stuff and put the rest in long-term storage in Tucson, and moved to Belize for good.
January 20, 2005 - Living With an Impostor - Tucson
About the Impostor
I think that I should be a little more specific about the nature of the impostor with whom I live. She is a chimera: always changing. Sometimes, there is an unusual warmth and lovingness to her—something that I've not seen for twenty years or more. At other times her eyes flash in uncharacteristic anger. Both forms are likely evidence of her own internal struggle to deal with her disability. Sometimes, I feel as though she might really love me, still. At other times, I feel as though I am viewed as some maniacal enemy or threat.
The problem is that I never know, from one hour to the next, which I may be dealing with. I can now imagine what it must be like to deal with a true schizophrenic split personality.
Today, she came across a calendar entry for the first of February. It was the name of a neurologist that her brother and daughter want her to see. It had taken some considerable work to get the appointment, but I had done so weeks ago, and she had seen the entry before. We have discussed the possibility of her going to see this doctor, even though she is terribly frightened at the prospect of the diagnosis. She never has said whether or not she would consent to go.
When she asked me about the entry, I could see her eyes flash at the enemy: me. I explained, as I have several times before, about the doctor and why the appointment was made. I mentioned that her general practitioner had also recommended this particular neurologist. "But he says I have..." she said. "He says I have.... He says that really horrible disease. It starts with a "P".
It took a bit of time, but I finally figured out that she meant Alzheimer's. She is so frightened that she now either cannot or will not remember the name of the devil that dogs her, step by shadowy step, stealing thoughts and words with erratic abandon.
I told her that her brother and daughter and I all want to know that we are doing our best for her, and that a clearer diagnosis and more thoughtful evaluation could help us do that. "Then let's do it," she said. "You'll go see this doctor?" I asked, not really convinced. "Yes," she said. "Let's do it."
Later, she said that I had discombobulated her.
I'm glad she decided to go to the doctor, but I am just as frightened as she is about what that day may bring.
January 21, 2005 - Living With an Impostor - Tucson
Tests show promise for Alzheimer's
Washington University tests show promise for Alzheimer's: "A potential treatment for Alzheimer's disease has surprised local researchers by its effectiveness in mice."
Our life in our home in Belize seemed idyllic. Oh, there were things like Hurricane Keith that wiped every leaf off of every plant for miles and put us in a state of struggling to survive without electricity, fresh food, hot showers, telephone, and the like. But survive we did. I had a small boat built just to suit my needs, and used it for occasional fishing trips and such. I even bought a twelve-foot Pico sailboat and started teaching myself to sail. But I was unhappy. More than that, I was depressed. The medications that had kept me stable for years were failing miserably, now, even at double or triple dosages.
Mary was spending less time painting, now, and more time watching DVD’s, but she had friends nearby and visited often, even going to a weekly ladies-only card game. She seemed a little withdrawn, but it didn’t seem serious. I, however, was a wreck. I had talked to our local doctor about what arrangements I might make for Mary’s care on the island if her condition were to deteriorate, and learned that I could hire a Cuban-trained nurse to provide around-the-clock care for only $400 per month if she could live in our downstairs apartment. This was really good news, because I already knew what such care would cost in the States. Besides, Belize was where Mary wanted to be.
January 24, 2005 - Living With an Impostor - Tucson
The Game
There is a game that lovers sometimes play: "Would you still love me if...."
You know.
Would you still love me if I got cancer?
Would you still love me if I lost a leg?
Would you still love me if I lost both legs and an arm?
And on and on.
Not a good game, I think. But if you play it, you'd better ask, and be prepared to answer the
REALLY tough questions.
Will you still love me if I ever so slowly lose my ability to speak and think clearly and remember important things?
Will you still love me if I don't remember who you are?
Will you still love me if I don't remember who we were, together?
• • •
Soon after returning to Tucson, I scheduled Mary for another neurological evaluation. The neurologist seemed uninterested. He asked her a few questions and said, “You have Alzheimer’s”. Without a word, Mary got up from the chair in which she had been sitting and left the room. I stayed to ask a question or two, paid at the front desk, and found Mary outside, in tears.
January 25, 2005 - Living With an Impostor - Tucson
I Became The Enemy Again
Because my wife has difficulty with words, and some memory problems as well, I have found it to be helpful to let her various doctors/dentists/etc. know. If I do not, they typically become "short" with her, make unwarranted assumptions, and fail to look for the real meaning in her questions and answers. In the past, I have simply tried to be present for each examination, sort of as her interpreter. But more recently, I've begun to secretly give notes to people, explaining the situation. This has proven very helpful.
Well, she is scheduled to see a dental specialist tomorrow, and as some doctors do, they sent the necessary paperwork for her to fill out in advance and bring to the first visit. Because she has such difficulty filling out forms, I almost always do it for her, as I did this time. On the "medical history" part, I noted that she has "Probable Alzheimer's," thinking that this might at least put the staff on notice that something might be a little different about my wife.
I didn't expect that she'd ever even look at the form, but I got it out today so that I would not forget to take it along tomorrow. Big mistake. She saw the "Probable Alzheimer's" notation, and immediately confronted me, in a rage and ready to fight. I tried to explain to her that I only used that word because two respected neurologists have told me that such is the name of her condition, even though they still can't be sure. Most people use the term "Alzheimer's" to describe any and all forms of (senile) dementia.
I had thought that she had come to accept things, but apparently not. Maybe she still doesn't understand, though I've carefully explained things time and time again. She seems to still be in denial.
She stormed out the door, returning a few minutes later. She threw her keys at a ceramic sculpture and stormed into the kitchen, right past me but without a word. I believe that she then took a buspirone to help herself calm down. This was a good sign. But then she closeted herself in the bedroom, and announced that she did not want me in there, and then refused to speak to me, or even make eye contact.
I'm the enemy again, apparently. I had used the "A" word. She doesn't trust me again.
So I called her younger daughter and described events, and she, thankfully, offered to come over after work and talk with her mother. She did, and though I don't know what was said, the storm has now abated (I even got a hug), and though I'm no longer the enemy, I likely remain suspect.
January 26, 2005 - Living With an Impostor - Tucson
Definition of Love
Since the late sixties, when I was in college, I've relied upon Robert Heinlein's definition of love as expressed in Stranger In A Strange Land. Having not re-read the book for forty years, I'm going on recollection here, but as I recall, and as I often quote it: "Love is that state in which another person's happiness is essential to your own."
I've not been in love often, and I could always assess whether or not I was truly in love by considering that definition. It has always served me well.
That definition has been the keystone that has held the love between my wife and me together in a stable arch. Her happiness has always been essential to mine. I've not always made her happy, of course, but when she was not happy, well, neither was I.
I've never cheated on her or stayed out late with the boys or done any of the hundred other things that husbands sometimes do. I wanted to make my wife happy, and in doing so, make myself happy as well. I worked hard and bought us a place in the country (her dream) and then a place on an island in the Caribbean (also her dream), and now I've brought her full circle to where we met (her decision). But I'm old enough now to understand that she is the one responsible for her own happiness. At least, at this point, there is NOTHING I CAN DO to make her happy.
So my definition of love, I suppose, must be modified to accommodate this change. Somehow. I'll let you know when I figure it out.
• • •
I started several small businesses while living on the island, mostly just to give me something to do, and to provide an outlet to the constant flow of ideas I had. None of them made much money, but enough, overall, to pay our recurring bills. Eventually, however, I fell into a debilitating ennui—a lack of interest in anything and everything. This was new territory for me. I hadn’t thought it remotely possible that I could completely lose interest in life and living.
OK. I got my expected three hours of sleep before the cycle woke me. Lying there in bed, soaked through with sweat, I wondered why it is so damned hard and expensive to get a sleep study done. Something like a 3-6 month waiting line and thousands of dollars. Yet I'd like to be prepared for the ECT by at least knowing my core temp, skin temp, ambient temp, respirations, heart, and galvanic skin measurements to have as a baseline. Why can't I get these things? It is not rocket science. Give any competent electrical engineer a waiver, some basic materials, and you could have one within a week. Problem is that there are probably already official patents for the parts and pieces, for the monitors, batteries, and software to run a CPU for it, and no one has seen sufficient profit potential in it to put it together and make it happen. But I'd like to know what is going on in my body to make these sleep problems happen; what's the trigger, and how does the cascade of events behave? Maybe I can rig something up myself from off-the-shelf parts. But I like empirical data over patient reports, especially when I'm the patient.
Of course I'd have to be prepared to defend in the various law suits that would inevitably follow as the sharks smell blood in the water and sniff out their chances for a big infringement win. Hell, something just like this probably already exists in the vaults of Big Pharma just so that people like me will have fewer options. Money. Shareholders. Greed. I long for the day of openness and goodwill and the "because it's the right thing to do" attitude of days gone by. But those days probably existed somewhere only in my tortured dreams.
“ It really is a shame that we wouldn’t connect earlier, at the appointed time. I know you are a busy person, but I arrived thirty minutes early, prepared my thoughts in the car, and checked in with your temp secretary at 1:45, and told her my name and that I had a 2:00 appointment with you. At 2:15, I once again approached the window and asked whether there had been some emergency earlier. I was told that there was none. I may not be a MD, but I do have responsibilities, and since I was being treated like a mushroom, I (rather haughtily, I must admit) announced that I waited no more than fifteen minutes for anyone (which is true, though if I had been informed of any delay I might have reconsidered) and said that I was leaving. Your poor temp’s eyes nearly popped out of her head.
“At any rate, due to an avalanche of unintended consequences resulting from the apparent worldwide lack of Lexapro when I needed it, my assessment of the likely tenor of our trip down drug lane led me to make certain decisions. The first was to get off what I was taking as soon as possible, beginning with the Cymbalta, and though my ramp-down was thoughtful but probably precipitous in your view, it continued. So, by today I was taking no anti-depressants or mood stabilizers; only maintenance doses of lorazepam to control the continuing anxiety attacks, which appear to me now as not directly related to depression, but directly entwined with the insoluble tension of the other realities of my life. During this ramp-down, I have realized that one or the other or the other or the other of the drugs I was taking had made me chronically constipated, which led to OTC remedies, and that I had developed some GI imbalance that had resulted in acid reflux to the max, which 150 milligrams OTC Zantac would not touch, even when combined with Tums. I find myself now on a diet of the most bland things imaginable, tonight’s supper consisting of bread and water. In any event, it is not my intention to continue on this course of using bigger drug hammers when the problems get tough.
“So, Dr. X, though it is my hope that no lasting damage has been done to things internal, and though I once again face nights of two to three hours of sleep followed by two to three hours of wakefulness and sweat-soaked sheets every night, usually preceded by some crying jag, and days filled with either work or anxiety (call it Traumatic Stress Disorder), I have decided to pursue the course of ECT as soon as is practicable. Dr. Y seems to think that you need to see me (I look the same) or talk to me regarding your willingness or lack thereof, apparently, to anoint me with your blessing so that further mysteries known only to doctors in terms of filling out forms and getting ducks in rows can be accomplished without delay. So, What do I have to do next? The on-line form told me to call 911 immediately, but that just wouldn’t work out well for anyone. I will do any reasonable thing required of me so that I can have the faint hope of regaining some control of my brain and myself at the earliest possible moment. Will you be able to order your ducks with Dr Y’s ducks without my assistance, or do I need to pay Kokopelli to get things arranged?
Though it took quite a few thousand dollars and a couple of years, Mary had turned our home in Belize into a well-designed, comfortable place to live, that included guest quarters on the first floor, along with our studio spaces. And over the years we lived there, we were hosts to numerous visitors from the States, both family and friends. Mary’s younger daughter visited often. And we came to expect that at some point during each of those visits, she would make it clear that she didn’t like us being there. She didn’t trust the people or the politics, and thought we should be back in Tucson, where things were more “normal.”
Certainly, we had seen things changing ourselves. Drug traffic and use had increased, as had violent crime. Governmental abuse of power and corruption seemed to have expanded, and greed seemed to have become basic to what had once been a friendly, welcoming community.
In August of 2004, we had our final houseguests: long-time friends from Tucson, a wonderfully skilled chiropractor with a rare degree in neurology from the University of Southern California. It proved to be a visit that would again, and quite unexpectedly, change our lives.
August 2004 - Time Node - Belize
Mary and our guests are relaxing under the palm-leaf thatched palapa we had built at the end of our dock. I walk the eighty feet from beach to palapa and join them. My friend the chiropractor says, “I think Mary has Primary Progressive Aphasia, and that can be treated.” Mary looks at me. “I want to go back to Tucson,” she tells me. “Permanently?” I ask. “You want to move back to Tucson?” There is a pause lasting no more than two or three seconds. She looks into my eyes. “Yes.”
January 30, 2005- Living With an Impostor - Tucson
The Button
Yesterday, I took my wife shopping. Usually, one of her daughters goes with her, but she seemed desperate to get some new jeans, and the store she wanted to go to was not far away. So we went.
The first problem was that she didn't know what size to get, but she was very clear in stating that a thirty-inch inseam was going to be too long. Well, I was no help, since she has also ALWAYS made it clear that I was never to buy clothes for her. Consequently, I was dumbfounded by the task of divination when it comes to assessing the actual meaning of a tag that reads: Size 4 ANKLE.
At any rate, the sales girl and I finally determined that there were no jeans available in that store with an inseam shorter than thirty inches.
Five miles and three stops later, and after a lengthy parking lot hike at a mall, we found some jeans that seemed to be OK. We asked about shrinkage, and were given a definite "Maybe."
So, when we got home, I suggested that she only take the tags off of one pair and wash and dry it in order to determine the actual consequences of these actions before committing to the whole lot. She thought that was probably a good idea, and then cut off all the tags. By this morning, they were washed and air-dried.
The sad part was when she came into my office, holding one pair of jeans and saying something about the button. She held it out to me like a schoolgirl with a scraped knee. The single button at the waist was buttoned. She could not unbutton it. So I did it for her.
There was nothing wrong with the buttonhole or the button. It was easy to do. But she had apparently forgotten how to do it, at least for a while. This woman has a Masters degree in Housing and Interiors from Wayne State University. But a single button, at least this one morning, was simply too much.
January 31, 2005- Living With an Impostor - Tucson
What's New?
I received an email from an old friend today, asking what was really new.
This was my reply:
“Tomorrow promises to be another day from hell, as we will be meeting with yet another neurologist, this one purported to be THE expert on age-related dementia in this area. But this will be the last.
She and I both dread it.
“Tomorrow, she will hate me again, because dementia is beyond reason and I cannot cure her. Her mind is slowly evaporating, and I can do nothing to stop it.
Please excuse the impersonal nature of this message, but I just have to do something about all the messages lingering in my in-box, some from as far back as July. They are messages of condolences, encouragement, ideas, support, and more; all from the heart and all read many times, just never replied to. I just can't do it. If I try to tell each of you about what is happening and how it is for Mary and for me, what our plans are, or are not, why we have ended up in this particular state of horror, I would fall apart each and every time.
I wish there was someone to blame, but that usually falls on me. We have all done our best, and done what we have thought was best for all concerned.
Suffice it to say, then, that I thank each and every one of you for thinking of us and taking time to write down your thoughts.
Mary is not getting better. I am almost broken. The system doesn't seem to care. The doctors don't understand that there are 24 hours in every day, and that every day is the same or worse. There are no vacations. There is little sleep. Mary and I can laugh together, sometimes. I cry a lot. A lot.
Each day is another battle just to survive, and the road ahead leads only to a darker, more dangerous path. Life happens. Neither Mary nor I did anything to deserve what we have been given. She loved me and I loved her too well, perhaps. And now there is nothing left but more tears. There is no cure. There is no solution. Brave smiles are just illusion for the rest of the world. Mary will die, or I will die, and that will be the beginning of the end of things for whomever is left.
I count the years of my life remaining by months, now, and the months by days, and the days by each and every minute. God didn't do this, neither yours nor theirs, and no God will pity us and lead us back to love in Him. Each and every one of us is alone. It isn't fate. It isn't destiny. It isn't punishment. It's just life and luck. We play the hands we are dealt when we arrive in this world, though we were given no choice. You breathe, you play. Some must win and others must lose in order for the scale to balance to dust and the ashes of bones in the end.
Mary and I played our hands as well as we could. We had a good life together. Mary is stronger, and always has been, with the happier spirit, so it is likely that my end will be the sooner. And I will welcome it. Depression has stalked me pace by pace for more than forty years, and I can feel its cold breath each night, waiting to walk with me again as soon as I take one more step. Some day I'll have to turn to face it and the dreams of death it will bring.
I'm so tired of crying, so tired of trying. But when I turn and bare my throat, it will be my choice then, and mine alone.
So. This is why I haven't replied sooner, or in more personal a way. I no longer have the strength.
At least, in this day of electronic mail, the tears that stain this page must be virtual for you, but for me, they are all too real. Thanks for being part of our lives; I hope it was during the good part. If not, I wish it had been.
• • •
That was it. We were going to move again, back to the place we started. I knew that Mary couldn’t make the trip to Tucson from Belize alone, so I immediately made arrangements for her to fly back to the States with our friends on the return leg of their journey. Then I got on the WWW and, within just an hour or so, located a condo for sale in the center of Tucson, in a tiny, gated community of only eight units. Both Mary and I were actually familiar with the place, since we had looked at one of the units there years ago when we were still living in the house on the hill. It would be perfect.
So I contacted another longtime friend in Tucson, one used to real estate matters and getting things done quickly. Within a week, he had arranged for me to purchase the property, and Mary was on her way, planning to stay with her younger daughter until the condo purchase was finalized. I stayed behind to sell Mary’s dream by the ocean and to once again give away or sell most of our belongings. It only took a month or so.
A bit over 36 hours ago, I decided to leave. I hadn't planed to leave, but the prior day had been especially bad, so I packed my one bag, small, loaded it into my car, also small, and headed north. I had not made a decision to head north, but I wanted to pick up a coat I'd just purchased and had altered. About five hours later, I was in Flagstaff, where I had gone to college in what now seems a bucolic setting. Nothing (save the School of Journalism, where I had spent many a night working as editor of the yearbook) that could be seen from the main road appeared the same. Traffic was horrible. Too bad for such a small town. I guess it is no longer small. I found my way to the old Route 66, where the cops often said you could catch most anyone if you just waited long enough, and near which I had lived for several years. There was a motel of the old sort, called the Whispering something-or-other, and the room was $38.50 and overpriced by at least that much. The cinder block room was apparently set on "cold" when it was built, probably in the nineteen-fifties, and it was a roach motel sans roaches. At least I didn't see any. The rest, well, you can imagine. Anyone looking for a movie location should check out room #15.
I was OK, with no anxiety attacks, even after purchasing a book from a girl who had not even been born yet when I went to school there. It was cold and rainy. Three of the five or so people I care about most called me and generally left me in tears. The gang of Three. They were all worried. Why had I taken my guns? (This place didn't deserve my blood, folks). Of course it was because they are, after all, my guns. No one wondered why I took my hunting knife. I guess they don't know that I do know where to nick the femoral artery. Folks, quit guessing. I'll do what I'll do, and it probably will not require guns or knives or even pills to do it. I had no plans. I awoke at about 5:30 AM and headed for the freeway. No plans. Didn't know I was coming back to Tucson until I saw the sign to Albuquerque passing swiftly away to my left. So I am here again in Tucson's own Hotel California. My personal cell. Cells, if you count each room as a separate cell. The lyrics were in my head all down the Black Canyon:
"Last thing I remember
I was running for the door
I had to find the passage back to the place I was before
Relax said the night man
We are programmed to receive
You can check out any time you like
But you can never leave"
So, I had checked out, but found that I could never leave. Which got me to thinking about where home is. If home is where the heart is literally, then I am always at home. If figuratively, well, I didn't leave it in San Francisco, though perhaps a few red blood cells many years ago. And I didn't leave it in Belize, though I could have, had things been just a little different. And I left only the minutest section of a valve in Fiji. Most of it apparently was stolen by Mary, my now de jure ex-wife, who is also in a cell here, just a few blocks away. This is not good.
I had some hope of escape, and of finding a place to truly leave my heart, figuratively, of course, with someone or some place that is a stranger to me now, and, apparently, forever. But that is a movie plot, usually starring Julia Roberts or some such. And that would have been fine with me... the stranger with no past who moves into town, putters around as a handyman and gives whatever is left of his heart to the damsel in distress. But no one had written that script, at least not for that day, and it will probably never be written. Or, if written, will not be produced because the main character is still locked away safely in his cell at the Hotel California, Tucson. The hotel is programmed only to receive, and it will receive you whether you want to check in or not. And once received, you're SOL, just like me.
I've been trying to read what was purported to be a good science fiction book. But I got confused and lost interest not half way through.
So I switched to a murder mystery wallowing in the most perverted of sociopaths and their lust for life even at their worst. A compass was mentioned relative to one character, a cop, and that got me to thinking. You know how it goes. I'm thinking that even a heartless sociopath has a drive, a joy; a lust for life and death; a hunger for the hunt, rhapsodic at the kill.
Those of us who are depressed are compasses without a sense of direction. We sense neither north nor south. No subtlety can sway us. No talk of concepts such as right or wrong, good or bad, should, perhaps, one day, patience or time, can send us wobbling in search of something apparently within easy reach of all others. But a nearby breath; a motor's heart, a coil's alternating electrical flow can pull at us and sway us without any subtlety or skill at all. We have no magnetic north, but only the passing currents of sorrow and dread. If you've never been depressed, you won't have an inkling of the meaning of this horrible difference between you and us. If you are depressed, you know, because these currents pull at you without cessation, without ease. To others, our defect seems a trifle, while to us it is the deadly truth of each day and night, unflinching at our wrath: sightless, deaf, and mute.
Imagine a compass tuned not to the Earth, but to the song of a bird, in passing. Or the beat of a heart. Or the torn scrap of paper dancing as though alive in a cold wind. Each of these things attracts us every day, with a hunger for constancy. Will this save me? Will that? We long for a true north rather than these flights of tenuous attachment and illusion. But longing does not living make. And we may even envy the steadfastness of a sociopath's goal. Even that might be a better tomorrow than another endlessly swirling night.
I tell myself to quit thinking like that. I tell myself to quit thinking about it at all. I tell myself to quit thinking. And I know only one sure way, as did Hamlet, with the bare bodkin close at hand. But for me it is not the dread of something after death that can turn awry these enterprises of great pitch and moment. I fear only that I will miss that which would have given me north again by the single beat of this heart. I would love to love life. I hunger for it as a sociopath hungers for the kill. Death is neither boogeyman nor thrill, but an irreversible end. And the irony and shame of missing north by one faint degree, one divided second, is what stays my hand and takes me to another day.
If you've known depression for as long as I, you will nod knowingly. It is the fact as simple as Martin Buber's I and Thou. There is a gulf between us that cannot be bridged with any meaningful discussion. It is for me only to survive another night.
• • •
On the advice of one of Mary’s brothers, I set up an appointment with yet another neurologist, a woman with a stellar reputation and specialization in Alzheimer’s who is conducting a number of studies on new drugs aimed at that disease in particular. Her assessment of Mary’s condition echoed the past. Alzheimer’s. She prescribed Aricept, which is one of the few FDA approved treatments available.
Or Primary Progressive Aphasia AND Alzheimer's.
At least she stayed for the full 45 minutes of the consultation. Perhaps because Mary’s younger daughter was there, and because this neurologist was a woman with a quiet and professionally sympathetic manner.
My wife's daughter and I asked some important questions, and received some important answers. Many of the questions I asked were actually for my wife's benefit, trying to give her some hope by discussing current research.
Advised treatment: Aricept—ramped up over a month's time. We were told that Aricept tends to cause less stomach/bowel discomfort than Reminyl.
Though reluctant, she has agreed to take the medication, but only after I reassured her that she could stop at any time that the side effects prove to be too distressing. She has been a brave soldier today, and has not blamed me for any of it. The nurse said that my wife was lucky to have me. I just hope that I can continue to be a brave soldier, too.
Hovering
I suppose that no news is good news, but I'm sure that I'm also getting a bit more accustomed to the flow of this new life. The odd things that the impostor says are a little less unnerving, now. Perhaps they are so much part of the "new normal" that each non sequitur presents a challenge. We talk as much as possible, whenever there is the most remote excuse to verbally engage, and I am becoming fairly adept at recognizing the sudden leaps of logic and bits of random (to me) change of subject or tense.
Today consisted of visits to a doctor and the psychologist she sees regularly for biofeedback and other rehabilitation exercises, as well as a trip to the mall for her summer wardrobe. This is where the hovering happens. And I'm the one doing it, surreptitiously, of course. At least, I don't think that she has caught me in the act so far. She shops, and I watch for possible potholes in the process, usually staying in the background until she is at the register waiting to pay. This is often a rough time, so I mosey over to ask her if she found what she was looking for or some such thing, and then hover there in order to jump in if necessary.
She spent almost an hour going through things at one shop today, and I learned much about fire extinguishers while sitting in the only chair available, in the back at an order desk. Finally, she went to the counter, apparently ready to pay for her selections, and I did a quick but unobtrusive mosey over that way and started hovering. Good thing. The sales girl—I am old enough to be allowed to use that term—had convinced my wife to apply for their store credit card in order to get a 10% discount on today's purchases, as well as, I'm certain, reams of unsolicited junk mail in the coming months and years. I was surprised because Mary rarely even bothers to check the prices, much less express any interest in saving.
But the issue was that she did not know her phone number, and the sales girl just couldn't understand that and seemed to be moving from the sweetly polite to the sweetly annoyed tone. In all likelihood, my wife could not remember the number, and must have also forgotten that she has all the important numbers and addresses and such written down and in her purse.
Of course, I couldn't say "Geez! Give her a break! She has Alzheimer's!" So I just asked if I could take a look at the form. As soon as I did, I knew there was going to be a problem: not with her phone number, but with her Social Security number. I asked the sales girl if they really expected us to give out her social security number along with her address, birth date, phone number and all the rest. "Yes," she said. "But it will come right back here." I asked if she had ever heard of identity theft. No. So I pointed out that she proposed to collect all this information in written form on this application and then relay that information to someone, somewhere, at the other end of a telephone line, and give them virtual carte blanch to do us in. She seemed unfazed, and repeated that we'd get it right back.
I paused, and then wrote down 123-45-6789. So she made her call and repeated this bit and that bit of information to whomever she was speaking with, including this obviously fake Social Security number. Finally, she turned to me and said, in all sincerity, that the number I had provided was not coming up as an authentic Social Security number.
I thought about striking a deal with her and saying, "Well, then. You say that I'm going to save 10% on today's purchases, if I just give you that number. That means that I'll be saving about $25 and putting our entire financial lives on the open market. Hmmm. How about I give you $15 cash, right now, and you give them YOUR Social Security number!"
But I didn't. Instead, I said, "I have plenty of money, don't need your discount or junk mail, and value our privacy more than $25, so just give me that application and ring up the sale." And she did. And we left.
The next store, unbelievably, tried the same routine, as though a carny hooker had taught them all in one big seminar. I heard her start into the spiel from the outer limit of my hover, and zeroed in like a heat seeking missile. The salesgirl and her backup (matched and coordinated partner or tag team member, who knows) never had a chance. I immediately launched into my questions about whether or not they understood the meaning of identity theft and so on, and their eyes got big and their lips got pouty, and arms crossed, and sideways glances started glancing sideways.
But I finally took pity on them, said I knew it was not THEIR policy, I was sure, and thanks, but no, so here's the money. "Have a nice day!" they said, in time and in tune, as my wife and I exited the shop.
I don't think that my wife knew what was going on all that time, or why I seemed so riled. But after twenty-five years, she's probably used to it by now.
But the point is that I learned something new about hovering strategy and tactics today, and that I'll be better equipped the next time I find myself... hovering.
February 05, 2005 - Living With an Impostor - Tucson
Patience
I tell myself over and over: be patient. I tell myself to remember that this woman is not the woman I married, and that it is not her fault. The stumbling over words. The incomprehensible and interrupted sentences. The lack of reason. The simple things that are somehow just too hard. The forgotten conversations.
She's not doing this on purpose. She is frustrated and aware and mad and doing her very, very best.
So, I remind myself yet again to be patient, all the while trying not to dwell on the fact that this is only the beginning of a very long journey to a place neither of us wants to go.
For about a year, Mary received treatment for Primary Progressive Aphasia. The psychologist I had chosen to do this work was well known, but his methods, though couched in scientific terminology, seemed to me suspect: black arts and mumbo jumbo sprinkled with “brain wave” analyses, electrode sensors, colorful maps of supposedly revealing brain activity, powerful magnets, and more. For a while, we went twice a week, then once a week. After many months, I asked the man for some empirical evidence that what he was doing with her was helping. He could offer me nothing.
Still, some effort seemed to both Mary and me as better than surrender. But she eventually came to dislike these therapy sessions with a growing passion and we stopped going altogether.
February 06, 2005 - Living With an Impostor - Tucson
Cheating
No, not that kind.
Tonight, we played dominoes. My wife was a little apprehensive, and said to me that she didn't know if she could do it. I told her that I'd have to re-read the instructions because I couldn't remember how to play, either. This wasn't what she was talking about, of course, but I thought it best to sidestep the issue.
The first hurdle was counting out the correct number of dominoes: seven. With each round, she'd ask me how many to take. I'd reply that we each should take seven. The next round, she'd ask again.
After about ten queries, she had it down. Seven. This was good.
The second hurdle was the look on her face when she began to fall behind in the score. And it dawned on me that I couldn't face her having to deal with another failure of any kind. It is just a game, but I know that losing is still losing, and it never feels good.
So I cheated. I let her win. No, I MADE her win by drawing dominoes when I didn't need to, just so that I'd end up with more. Oh, and I loudly protested each loss of mine, saying that I'd get even next time. I knew she wouldn't notice that I ended up with tiles I could have played. Hell, she wouldn't have noticed if I had just added up the points wrong.
But the important thing was that she did win, and we played until she didn't want to play any more. It was, in all, a nice diversion for both of us.
February 07, 2005 - Living With an Impostor - Tucson
Air In My Tooth
This morning my wife put her finger in her mouth, pointing to the back side of her front teeth. "My tooth," she said. She pointed to the front, and then again to the back. "Tooth," she said.
I asked if there was something stuck between her teeth. "No," she said, pointing again. "There's something...."
I asked whether she was losing a laminate, which has happened before. "No," she repeated. She sighed in exasperation. "Never mind," she said.
I asked if her tooth hurt. "Yes," she said. "There's air. There's air in my tooth." "There's air in your tooth?" I asked. "Yes," she said. "You know... when there's air in your teeth?"
"Air," she said. "Air," I repeated. "Well, we'll get some special toothpaste to use when you brush your teeth and see if that helps."
We stopped at the drugstore and got some, but she hasn't used it.
She has been taking Aricept for a week now. She has complained of being dizzy and "woozy." I suppose it is too early to expect to see any improvement.
February 10, 2005 - Living With an Impostor - Tucson
Peanut Butter Cookies
Tonight my wife asked me to help her make peanut butter cookies. Her time in the kitchen is becoming more of a challenge, and I think that she understands that she is having trouble.
I got down the mixer, preheated the oven, and read the instructions while she gathered the requisite supplies. The concept of using two half-cup measures of something to end up with a full cup was beyond her. And there was a bit of confusion about whether or not she had added baking soda. At one point, she misunderstood something I said, and was scrambling to get some water to put in the mix, but we got that straightened out fairly easily.
When all was ready, I made the balls of dough, and she flattened them and put the crossed fork impressions in the tops. I was putting the balls of sugary dough onto the cookie pan from left to right and top to bottom... until we got in each other's way, at which point I put the dough balls down from right to left. Such a little thing. An obvious decision and move on my part, but it was simply unacceptable to her. I had broken the pattern. So she moved the balls to where they SHOULD be.
In the end, all was well, and she admitted that the cookies were to her liking, and she seemed pleased. And I was glad to have helped.
Afterward, however, my anxiety level rose dramatically. Again, it wasn't one thing. It was ten or twenty things that just weren't right about how she dealt with the various processes involved; signs to me that she is trying very valiantly to cope, but that her reasoning and thought processes are continuing to wither. She continues to evaporate before my eyes, and I am so, so sad.
She was frustrated by not being able to remember what day it was. She checks the calendar often, and asks me for the day or the date with increasing frequency. This reminds me of my mother's battle with Alzheimer's. My father put several gadgets on top of their TV, where she could always see them for a quick reminder of the day and date. I never asked, but now I know why.
I tell people that my wife has good days and bad. This is just one of the bad ones. Lots of confusion and disjointedness. There is little that I can do other than to hope that tomorrow will be better.
February 15, 2005 - Living With an Impostor - Tucson
The Channel Guide
We get cable. The cable company changes the channel lineup with some irregular frequency. My wife does not like change. She is like a blind woman trying to navigate in a room where the furniture has been moved.
Luckily, I discovered that the cable company had been at it again before my wife did. I got online, and after a half-hour of navigating the company's two websites, found an updated guide. The print was so small that I knew both my wife and I would have a hard time reading it, so I edited the file to crop out most of the junk and drivel, and then highlighted her favorite channels, printed it out and took it to her.
She immediately saw that BBC America was not there, so I examined the full listing and determined that the new channel was 132. I told her she would need to write it down on the lineup I had given her. She wrote down 132, and then carefully wrote BBC. This was good. But I also noticed that National Geographic had moved to channel 137 and was also not on the edited list, so I asked her to write it down, too. She wrote down 137 and hesitated. "National Geographic," I repeated. Still, she hesitated, pen poised above the paper. Remember, my wife has two degrees from a major university. The impostor does not.
She asked, "Do I have to write the whole thing?" "No," I said. "I'll do it. No problem."
I wanted to shout: "Who are you and what have you done with my wife?"
I didn't.
February 17, 2005 - Living With an Impostor - Tucson
Silent Screaming
There must be a word for this, but I don't know what it is. Inside, I'm screaming. Not a full-blown panic attack; just a kind of tenacious anxiety. I listen to myself screaming in my head, but there's no outward sign other than, perhaps, a bit more of an appearance of being elsewhere.
The cause seems to be the now-unremarkable frustration of watching my wife evaporate: the anxiety of living with an impostor. But the real terror, I believe, is the certain knowledge that things will get worse. Many others have passed this way before me and are now living in a hell that I can only imagine. I suppose that some are better prepared to deal with this reality, and some are not. I am in no way remarkable. But it is that imagining, that dread, that vibration in the track of my life that portends an onrushing calamity, that makes me scream, silently.
February 18, 2005 - Living With an Impostor - Tucson
Seven Tables
My wife has short hair, and she likes to get it cut fairly often so that it stays short. So, today was one of those days, and she spent about 45 minutes with the hairdresser while I cooled my heels in the lobby.
Afterwards, I took her to a favorite restaurant for lunch. I tried to start a conversation and, knowing that the hairdresser is usually full of news, asked her what he had to say.
"Well," she said, "They're going to put up seven tables, and then they put something on them or you get on it." I asked if these seven tables were going to be at the shop or at his home. "At his house," she said. "I don't know." I asked what they were going to do with the seven tables. "You know," she said. "I don't know. You get on one. But there are seven."
I chose not to pursue the matter further. I'll likely always wonder about those seven tables. My wife didn't seem concerned, so I suppose that I shouldn't either. Still....
February 24, 2005 - Living With an Impostor - Tucson
Pills
Pills have become a problem, as I knew they would. My wife has always been very independent-minded, and has always been very much her own boss. Ours has been a relationship in which the REALLY BIG decisions have been hers to make. I used to shudder every time she would walk into a room and announce: "I have made a decision!"
But on lesser levels, too, certain things were made clear: I was never to buy her clothing of any kind. She always made the final choice of restaurant. She would never trust my skills in the kitchen. She would choose what pets to have and when. These things, though in many variations, I suspect, are part of any lasting marriage.
But the smallest of things are now problematic. She takes a number of different pills related to her dementia, and is having a harder and harder time remembering what she has taken, and when. Yet when I suggest that I take over that chore and dispense her meds as required, she balks. "No," she says. "I'll do it!" She wants desperately to be in control of her life.
So, I count pills when she is not watching, and I ask her throughout the day whether she has taken this one or that one, and then try to confirm.
Some day soon, I will have to demand that I dispense the pills. I'll probably have to hide them and keep them under lock and key. I dread that day, for another milestone will have been reached, and she will know it too.
August 18, 1997 - Time Node - Patagonia, Arizona
My 50th birthday. Mary is in Belize, and I’m at the glass house. It is just after noon, and I’m walking from the studio to the main house. The silence of isolation is broken only by the faint whirr of insect wings and the soft crunch of my footsteps as I walk. Without warning, like a staggering lightning strike and thunderclap, but invisible and soundless, a wave of depression consumes me. I pause. I can feel it within me. The black dog has returned, teeth bared and dripping blood.
February 26, 2005 - Living With an Impostor - Tucson
Alone
For the next eight days, I'll be alone, as my wife goes on another great adventure: a trip to London with her two daughters and her granddaughter. I should be happy. But I've been fighting back tears since she left this afternoon.
I worry about her, of course, but I also worry about how I'm going to handle the next few days. Some people have recommended that I do something special for myself; something I really enjoy. But I won't. And I won't because I don't want to find something I enjoy. To do so would put me at risk of then resenting my wife when she returns and I can no longer do that enjoyable thing, whatever it might be.
Oh, there's no end to things I'd like to do, but most couldn't be done in eight days. And I'll be alone. My wife and I have shared almost everything for over twenty years, and I never was much good at enjoying ANYTHING without a partner.
So, I expect that I'll end up sleeping a lot. And eating junk food. And trying to figure out what the hell I'm going to do over the next months and years. The way I figure it, as soon as she has to go into some kind of care facility, our monthly costs will go up to around $5,000 per month. At that rate, we'll be flat busted broke in about ten years, which will put her at seventy-six and me at sixty-seven. If I manage to die sooner, she may get enough from my insurance to last another couple of years. But if I don't die, we WILL be destitute. Then, she will become a ward of the state, and I will become a homeless drifter.
Odd, isn't it? Nobody plans for that. And I did everything right. I worked hard and made a lot of money and saved. And all of that is going to pay for my wife's care, even after she no longer recognizes me.
The agony my father must have felt as he was wrestling with these same issues! I fear that I am not so strong as he was.
March 01, 2005 - Living With an Impostor - Tucson
Plans and Dreams
Some of the most difficult things to say goodbye to are plans and dreams. My wife and I have always been planning one thing or another: an addition to the house, a vacation, a move. Something.
But now there are no more plans or dreams. We used to travel quite a bit. We've been to Alaska and Scotland and Fiji and New Zealand and Mexico and Belize and countless places here in the States. Sure, we can remember the trips together, and we can look at old photos, but there are no more plans. I believe that her trip to London was just a way for her to be with her daughters and granddaughter one last time. And, oh, I do hope that it goes well.
But we have no other plans. I'm just feeling sorry for myself, I know. I'm still young, but just getting through each day and trying not to think about the horrors that lie ahead consume my life. I feel like a refugee in my own home, with bombs falling and food scarce and people dying all around. Each day exhausts both of us. We seem to live in a world of debilitating fear. To speak of tomorrow is a cruel joke.
But perhaps she doesn't really care. It is probably just me wanting to find a way out. Perhaps I should construct a dream for myself that ignores my reality. It would be a real dream, with no plans attached. Like dreaming of a city in the clouds or life with fairies and nymphs.
I feel so powerless and afraid and angry and greedy. I want to be a good man, but it becomes harder and harder each day. We all have burdens to bear, and I guess this is just mine. Nobody ever said that life was going to be fair.
March 06, 2005 - Living With an Impostor - Tucson
Introspection
Since I've now had several days alone, I've had a lot of time for introspection. That's a dangerous game, and the fact that I've been battling depression for over forty years makes it especially risky. My recent “lurking” on an Alzheimer’s caregiver message board have also brought some of this on. I've been getting a daily summary of the interaction, and it is almost too much to bear.
People are so different in how we respond to events such as a loved one developing Alzheimer’s. I am alternately heartened and distressed by the personal stories I read. So many good people are suffering just the same as I. Feeling alone. Feeling guilty. Feeling frightened. And we all cope in different ways, each according to the possibilities afforded by our particular situation. Perhaps people with too little serotonin in their brain's chemical stew should not read such things. I think this must be the root reason why I have thus far refused to join any AD caregiver support groups.
At any rate, all this introspection, regardless of cause, has led me to the conclusion that I've been feeling awfully sorry for myself of late. That's probably why I've been writing this blog; perhaps I just want others to share my pain.
I think that I should just admit that the writing on the wall is etched in stone, and that I should get with the program. My life as I have known it is over, and there will be no escape. No sense making plans or dreaming dreams. Just get from one day to the next with as much dignity as I can muster. Continue to make arrangements for my wife's care when I am gone, and wait to go.
I never figured that when my ship came in, it would not be to bring me riches, but to take me into the abyss. Maybe God controls the tides on which that ship rides; I don't know. But I'll go aboard without complaint and, I expect, a grand sigh or relief.
See? I'm talking like an old, old man. I'm thinking old man thoughts. I'm sifting through my past, looking for clues to my future. Sure: some of this is my brain chemistry talking. But it remains all too real for me.
March 07, 2005 - Living With an Impostor - Tucson
Safe At Home
My wife returned from her London adventure with her daughters and granddaughter, apparently only a little worse for wear. It was so good to see her and hear her and hold her again. All day today I was severely depressed and dealing (not well) with a sense of apathy about life more profound than any I have experienced previously.
I guess I just don't do well without her, since we've spent ten times more time together than most people who have been married much longer than our twenty-some years.
March 09, 2005 - Living With an Impostor - Tucson
Tonic
I'm amazed and confounded. My wife's return from her adventure with her daughters and granddaughter has apparently precipitated an end to my most recent bout of depression. It seemed to happen almost immediately, and was totally unexpected.
I'll have to think about this. I do love her, of course, but I would not have thought that having her away for a few days, and therefore being relieved of her care, would lead me to such a depressed state, and that having her home again would make such a difference.
She's no better, of course, but I am, and I wonder what that means about both the nature of our current relationship and our future as her disease advances. I'll let you know if I figure anything out.
March 11, 2005 - Living With an Impostor - Tucson
Movies
My wife loves movies, especially ones she's already seen and that are not too complex. She loves love stories. Occasionally, we buy new ones.
Recently, she saw an ad for The Notebook, and asked me to get it for her. I did, and we watched it together last night.
Almost immediately, I knew that disaster loomed: it was a love story about Alzheimer's. "How are we going to get through this?" I wondered. But we watched. Near the end, of course, I was struggling to hold back tears, and my wife was crying. I tried to treat it lightly and just hope that she wouldn't see me cry. It was unfair, as most love stories are. The love was too grand. The despair was too awful. And it set an impossible standard for those of us dealing with the reality rather than the script.
Thankfully, for whatever reason, my wife chose not to say anything about the movie. Not a single word. I was saved.
But this much is clear: our lives do not come with benefit of a professional score and orchestra. And I'll never have the strength of the hero, nor my wife a periodic return to loving lucidity, albeit brief. We will not likely die together in a final embrace, but alone, as most mortals really die. We are not the stuff of fiction, but of the warty and silent confusion of real life.
Perhaps my wife knows this, too. This morning, the DVD was gone from the coffee table. Whether discarded or simply put away I do not know. If it was not discarded, perhaps I'll find it in a drawer some day. And burn it.
March 18, 2005 - Living With an Impostor - Tucson
Notes From The Future
Time is at the mercy of the mind. Endless minutes collapse into fleeting hours, which are then consumed by days that recline, ever so slowly, into the past. I jolt along from one frame to the next as though there remains some structure to it all which a mortal might yet apprehend.
For a week or so, if my mental calendar remains sequentially intact, I have continued to lurk on the AD caregivers' message board. If nothing else, it has been, for me, a telescope that reveals not the distant past, but a range of possible futures. I see myself in each message of pain and confusion, and weigh myself against others. I see the countless paths upon which others tread, and wonder which of them will be most like mine. Countless junctions. Innumerable permutations. But as I watch them mysteriously diverge into the convoluted forms and fingers of a giant oak, I can also see beyond, as though the sky is a mirror, where the myriad branches are inexorably drawn together again into the one path leading to death.
Each of us comes to life with a different set of strengths, weaknesses, symmetries, deformities, tools, and gifts. We are born to rich nation or poor, to lightness of spirit or dark, to facile mind or plodding lack of wit. We are not created equal. And as we are formed, so is much of our destiny, and so are we able to shape our destiny to the larger or lesser degree. Each bud flowers to one of a multitude of colors and then fades. No matter the wit nor the virtue. No matter the triumphs nor the pain. Our destinies coalesce into dust, and the great wheel of time moves on.
March 19, 2005 - Living With an Impostor - Tucson
Writing
I aspire to write with selfless clarity, but often see my words as being ponderously sophomoric. Though my writing on the subject at hand sometimes suffers because I am swept away, it nevertheless has served to help me focus on things that matter to me, and to that extent, it is a labor of self-examination and pure selfishness. I am having a thoughtful dialogue with myself, and have chosen to let the world observe, at least for now. Consider this to be a cautionary tale. With luck, you'll never have to watch someone you love evaporate before your eyes. Without luck, it may happen to anyone. It may happen to you.
So, I offer no comfort here. Nor do I attempt to claim pity for what is no more than one man's personal tragedy. Millions suffer far more than I, each and every day. If you want to help, you need not look far. Just don't look away.
My wife has had several good days, and our lives seem almost normal, if I acquiesce to the "new" normal. Perhaps, if I can keep sliding that scale of normalcy down along with the quality of our lives, everything could, conceptually at least, turn out just fine.
March 20, 2005 - Living With an Impostor - Tucson
The Black Cat
This afternoon, I mentioned to my wife that she seemed to be doing better for the past week or so. Her language use seems to have improved a wee bit, though it is sometimes hard to tell on a day-to-day basis.
Later, at bedtime, I heard a ruckus of sorts in the bedroom, followed quickly by some shouted obscenities, and glanced around from the computer to see our black cat being chased down the hall. I did not need to ask, but she told me anyway. "I just got into bed and that damned cat jumped right up and BIT ME!"
The language was perfect for the occasion, and I commiserated with her.
A minute later, she came into the office, holding out her arm and a little tube of Abreva (for cold sores) that I had recently purchased for her. She had apparently been trying to put some on her wounds. My wife had gone away again, and the impostor was back. "That's not the right thing to use," I said, taking the tube from her hand. "First thing we need to do is wash it really well, and while you do that, I'll find the Neosporin ointment."
She washed her arm, and I found the Neosporin and gently applied it to places she pointed to on her arm. She seemed comforted and satisfied, though she has now locked the cat out of the bedroom... again. This is not the first time, nor will it likely be the last time that those two have a dispute.
And I must be clear that it was, indeed, a largely unprovoked attack. It seems to be the black cat's nature to use the tools he has available to attempt redress for some perceived wrong. Little does he know that this feline tantrum also shattered my illusion that all is well. The impostor returned, and with her, my fear.
March 23, 2005 - Living With an Impostor - Tucson
Goodbye Pumpkin Pie
I may have mentioned before that I dread going shopping with my wife. She never was comfortable in supermarkets, and always claimed that there was information overload. I certainly can't disagree with that. Most of us automatically engage some kind of internal filtering process in order to survive in places designed to grab our attention at every step. I've gotten so good at this filtering that I can usually stick to my battle plan without issue, but sometimes the filters shut down too much of my awareness... which is why I ended up in the "9 items or less [sic]" line with a basket full of stuff. When the checkout girl pointed this out to me, I apologized and bit back the retort that "Proper English would read 'Nine items or FEWER'!"
But I digress. As usual, I took control of the cart when we entered the store, and tried to go slowly enough so that my wife could finger various things in the produce section. If I do not pay close attention, she'll often linger at some shelf or other while I hurry on, looking for things on our shopping list. I often have to stop and go looking for her. And I often have to explain why certain things are in the basket and why we do not need some others.
Sometimes, I'll send her off to hunt for something simple, and will rush ahead to get what we need as soon as possible. She rarely finds what I sent her to look for, or forgets the task completely. Yesterday, we were almost finished when she started to talk about pumpkin, and I divined that she wanted pumpkin pie. She had apparently been looking for pumpkin pie filling without success. Luckily, I was able to spot some fairly soon. But then we had to determine what size can to get. And I asked her about what kind of piecrust she wanted to buy. I described the various kinds available, but she didn't seem to understand, and then made motions with her hands to mime rolling dough. "Oh," I said. "You want to make your own pie crust! What do you need?" She couldn't tell me. She looked into my eyes and said "This is very hard for me." "I know," I said. "But, hey! Why don't we just buy a pumpkin pie, already made? They probably have them right here!" She smiled and nodded in agreement, and we laughed at the simple solution.
We found a frozen pumpkin/cheesecake pie of some sort and added it to the cart. Crisis avoided. I continue to learn. Perhaps, before too long, she'll forget that she ever could make pumpkin pie.
One of the remaining great questions plaguing science (well, it's not, but it SHOULD be) is whether the shoe gene so often expressed in women is part of their prehistoric development, or a relatively new mutation. I can state with some certainty that, though it is unlikely that there is a cause and effect relationship between this gene and Alzheimer's, neither are they mutually exclusive. In other words, my wife may suffer Alzheimer's, but she has to date not lost one iota of her lifelong fascination with shoes.
Yesterday morning while still in bed, spooning our warmth in the cool morning air, blanket-to-chin both, she told me that she had awoken from a horrible nightmare. "We were in the deep South somewhere," she said "and the humidity was the same as the air." I knew enough to figure out what she meant. "And we were diving," she continued, "and I didn't know we were going to dive." Well, she doesn't dive-doesn't even like to go into water that is not comfortably clear and contained all 'round by white plaster. But this was a dream.
I immediately recognized that this was the horrible part of the dream, and said, sympathetically, "Oh! Poor baby! You lost your SHOE! What a horrible nightmare!" And she started to laugh. "That must have been DREADFUL!" I continued. And she laughed harder. And I started to laugh, too. "Of all the terrible things that could happen in a nightmare, that must be the absolute worst! I'm SO sorry!"
Well, gales of laughter followed. She couldn't stop. I couldn't stop. I didn't want to stop, and I didn't want her to, either. But of course we did, probably after no more than a minute, really. But that was a wonderful minute, and it has continued to give me strength ever since.
Tuesday, April 05, 2005 - Living With an Impostor - Tucson
Scrabble
My wife loves to play Scrabble, and she was always REALLY good at it. I played against her a few times over the years, but she was always just too good. Way too good.
Given her current difficulty with language, it is a good thing for her to play, and she has continued to do so with the computer version of the game. But now she is having trouble—not with the words, really, but with the computer. She used to have a modicum of computer skills, and for many years had little real trouble with things such as email and even Quicken. But as time has moved on, those skills have floated away somewhere. It has been years since she sent an email all by herself.
But now she claims that the Scrabble game "doesn't play right." She came in to my office a while ago and said, very sternly, that she wants a new Scrabble game. "One that works," she said. "It just doesn't do right and everything goes everywhere, and I just hate it, and I want a new one."
So I went in and restarted her computer and changed some options on the game and got her going on the first play. All seemed to go well, and I told her to just holler when it started to act up again.
About 15 minutes later, she did just that, and I hurried in to see what the problem might be. Sad to say, she had already quit the program and decided to go to bed. "I give up!" she said. It was obvious that she was extremely upset. "I just won't use it. Not ever. I hate it."
I wouldn't argue with her, so just turned around without a word and left the room.
Because I can't fix the problem. No one can. Not even a new game.
The problem is not the computer or the game, but her brain. It just doesn't work the way it used to, and things that were once simple are now just way beyond her capabilities, and she doesn't seem to know that. And I don't know how to tell her.
Monday, April 11, 2005 - Living With an Impostor - Tucson
The Sleep Defense
I know that I'm hiding from something when I can't stay awake for more than a few hours at a time. It was once my only defense against depression. Now, it seems to kick in whenever stress levels are high. It is as though my body knows things that I don't, and when it has had enough stress it just shuts down. Not surprisingly, I usually feel at least a little better when I awaken.
I suppose that this latest stress is based on the "family meeting" between my wife, her younger daughter, and me last evening. We spent about an hour at the kitchen table going over the most recent drafts for our Living Wills, General Powers of Attorney, and Successor provisions in our revocable trust.
My wife has chosen to pass on being named my attorney-in-fact, and wants her younger daughter to do that, both on the General POA and the Living Will with medical provisions. I've made my wants in this regard exceptionally clear to my doctor, attorney, accountant, wife, and stepdaughter, so I doubt that there will be any room for misunderstanding, and I've put the attorney on notice that if I am kept alive or brought back to life against my wishes, I will hold him personally responsible and do everything in my power to kill him.
He doesn't know whether I'm crazy or not, but I'm sure that I've given him pause. And that was the point.
Anyway, discussions about life and death and the disposition of property and such are never easy. We've been protected pretty well all the way back to 1987, so this is really just a reaffirmation and revision based on current circumstances. But it remains difficult and painful.
Consider: I have had to now direct that my stepdaughter, a competent young woman of some forty years and who has known me for only twenty of those years, will be granted full power in all matters of finances and life and death should I be unable to manage them-NOT the woman I love and married all those years ago. Oh, I'm sure she'll do a fine job, but she shares neither blood nor name with me, and has always made it clear that though I may be married to her mother, I am NOT her father and never will be. She's softened the edge a bit over the years, but I fear that I'll always be just her mother's husband.
Ah, well. I've revised the drafts and sent them off to the attorney to be modified. When that is done, we'll arrange to sign and file them with the appropriate bodies.
And then I'll move on to the real fountain of anxiety washing over me now: whether to sell this place and move on to something more flexible that might provide us with better options in the future as my wife's condition deteriorates. All this while I try to figure out how to take care of myself.
Not tonight. I'm sleepy.
Friday, April 15, 2005 - Living With an Impostor - Tucson
Swaying
I know it's silly, but I always thought I was going to sway the course of human events. At least a little. If not a real movement, then perhaps a wiggle. Or a wobble. The butterfly effect, you know. And who's to say that I haven't already done so? I do, I suppose. I feel as though I've been straining against the inertia of life as Prometheus strained against that damnable cliff in the Caucasus. No. That's really histrionic of me. (Until just a moment ago, I didn't even realize that this was an actual clinical disorder!)
Perhaps I feel more like Sisyphus, only the rock remains motionless. I am a lever sans fulcrum. Pointless.
Ah. You can see that I come by depression honestly, having cut my philosophical eyeteeth reading John Paul Sartre's Nausea during my tender teenage years.
Sigh.
I suppose that is why I am so finely tuned to the signs of depression, especially when I see them in my wife's gaze. Oh, I know that look. I've seen that same blackness and felt that same despair. And it hurts all the more because she is (was) ordinarily such a terminally happy person. Or, if not happy, then content, which is the most that so many of us can really hope for. I've said nothing to her for fear that my recognition of her struggle will somehow give that darkness more substance and make it all the more real.
With luck, she will walk out of that dark place after one simple night of simple dreams. She doesn't belong there.
April 16, 2005 - Living With an Impostor - Tucson
Libretto
This morning, I received a telephone call from a former neighbor and still friend with whom I am in occasional contact via email and phone. My wife has always hated talking on the telephone, and hates it even more nowadays, so I'm almost always the one to answer and do the talking whenever someone calls or needs to be called.
This evening, as we were trying to engage in at least a little conversation over dinner in a noisy Italian restaurant, I tried to explain the gist of that earlier conversation, and my wife did something amazing.
Somehow, with all her language difficulties, she had in an instant found the perfect word to describe those conversations. Perfect. Poetic. Marvelous. Amazing.
Tuesday, April 26, 2005 - Living With an Impostor - Tucson
Box Step
Remember those dancing lessons when you were a kid? I do. The famous (or infamous) box step of the waltz provided constant movement, but you always ended up back in the same place. Of course, tiny pivots could accumulate and change your orientation to the world at large, but you were still locked in your own claustrophobic, square universe, sweating or swooning depending on the attractiveness of your partner.
Well, that has been the story of our lives for the past week or so. Tiny pivots:
The guacamole war. (Don't even ask.)
The hushed discussions with her younger daughter.
The trip to the ophthalmologist.
The laughter in bed during territorial disputes.
The anxiety.
The careful words.
And back. Constant movement, but no real change. A small, square universe.
The box step.
May 11, 2005 - Living With an Impostor - Tucson
Still Dancing
I haven't posted a message to this blog in quite some time, and I'm not sure why. I think about it often. I catalog little incidents that might reveal something important that I have not already examined, but little seems important. Perhaps this is just a sign of exhaustion, or of acclimation-I really don't know.
But there is this: my wife still does not believe that she has Alzheimer's, and she wants to prove it. This must be why she has asked me, for several days now, to name the Vice President of the United States. She's had trouble remembering his first name. I did not understand why she was so interested in his name until I noticed that we are scheduled for a return visit to her current neurologist on Friday. The last time we were there, about three months ago, the neurologist asked a series of questions about current affairs, including the names of the President and Secretary of State. My wife is cramming for an exam.
And, to tell the truth, I hope she aces it. I want her to win and give me a big "I told you so!" I want to be on her side and believe. Because then, perhaps, I'll no longer be the enemy in her mind.
And I'm also afraid of what lies in store for us if she fails the test. I hope the neurologist understands this. We need truth and comfort in equal measure.
So, in the meantime, we continue to dance our slow box step of life, trying to make up the music as we go along.
May 25, 2005 - Living With an Impostor - Tucson
Diagnoses
Ah, doctors.
Three times in as many years, three reputable neurologists, including one who specializes in age-related dementia, have unhesitatingly diagnosed my wife as having early-stage Alzheimer's. One Ph.D. Clinical Psychologist and Neurobehaviorist is apparently convinced, and has convinced my wife, that she does not have Alzheimer's. His original diagnosis was "primary progressive aphasia," but he is now saying, after ten months of twice-weekly sessions involving all manner of biofeedback and left-temporal lobe stimulation, that she is getting better. Alzheimer's patients do not, of course, get better; therefore, she cannot have Alzheimer's.
Of course, I am skeptical, because he has failed to provide me with any empirical data to support this claim, and though it is plainly evident that she does suffer aphasia, I have detected no improvement other than that which might be credited to wishful thinking. And certainly she continues to exhibit other symptoms more consistent with AD than with strictly aphasia.
My wife desperately wants to believe that she does not have Alzheimer’s. I want to believe it, too. But I don't. And she knows it. And she can't forgive me for that. And neither can I.
Heretofore, I've never lied to her about anything. (OK, maybe I did lie about how good one or two of those terrible meals were.) But I think that I'm going to have to start. I'm going to have to behave as though she IS getting better (and therefore cannot, obviously, have AD)-all the while dealing with those other recurrent symptoms as though they do not exist.
And with luck, the reward for a convincing performance on my part will be a greater likelihood that she will yet achieve some measure of happiness.
December 24, 2005 - Time Node - Tucson
Christmas eve. It’s almost 11:00 PM. The studio is quiet. I set the alarm system, close and lock the door behind me. The air is cold, and my thin coat barely keeps out the chill. I walk south and then west, soon arriving at a nearby restaurant that is open until midnight. As I expected, the place is nearly deserted. One couple sits quietly in a booth near the windows. There is a cook, and there are two waitresses behind the counter, one preparing to leave. I sit at the counter and order French toast with bacon. The departing waitress greets her ride at the door and leaves. I finish eating, and the remaining waitress brings me the bill. It is just under $10.
I reach into my pocket for my money-clip and take out a $100 bill, which I put on top of my tab. The waitress comes over and picks it up, pausing when she sees the denomination. “Don’t you have anything smaller?” she asks. “I don’t want any change,” I say. “What I want is for you to have a very merry Christmas.” The waitress has no words, but simply stares at the money. I’ve still got my coat on, and I stand up and walk out the door, not looking back.
• • •
In early January of 2006, Mary’s younger daughter brought her down to my small prison of a studio. It was dark outside. Seeing Mary, and feeling defeated and worthless, I began to cry. Mary asked me to come home, and I told her that I couldn’t. She didn’t understand, and they both tried to convince me to return to the condo. My tears turned into a torrent. They pled with me, and I only cried harder, finally rushing into the bathroom and locking the door. There, I curled up on the floor and cried until I thought I could not possibly cry more. Mary and her daughter left. It took 16 milligrams of lorazepam to finally turn off the tears and lead me into a fitful sleep.
January 09, 2006 - Living With an Impostor - Tucson
Elder Law
I have been advised by a specialist in Elder Law that, if I should hope to conserve any of our savings, gained through hard work and sacrifice over the past twenty-five years, above a home, a car, and $2,000 in personal items, I must divorce my wife. Perhaps if I were older. Perhaps if I were in poor health. Perhaps if I did not love her still, in spite of the fact that she makes me crazy sometimes. Perhaps if I had no possible inheritors, the decision might not be so gut wrenching. I do not have the strength of my father. I hope for a life after Alzheimer's. I have had to ask questions no man or woman should have to ask. Ever. This is an unintended consequence of well-meaning state legislation, but that fact makes it no easier to bear.
• • •
During this period of personal upheaval, it was necessary to find and purchase a house where Mary and her daughter could live. Mary had always loved house hunting, and it did not take long for them to find a suitable place.
February 10, 2006 - Living With an Impostor - Tucson
Game Almost Over
I was going to send the following email to a friend, but, in the end, couldn't do so.
"Well, I signed the papers today, and by next Wednesday, Mary will own the house. Actually, it is hers now, but all the money hasn't come in yet, so she can't move in yet. She's already packed and ready to go. This purchase took all but about $15,000 (which will go to pay moving expenses, roof repair expenses, insurance and such) of our life savings, so though I do own the townhouse and have about $80,000 in a retirement account that I can't touch, my total liquid assets now amount to $10,000.
“What a change. No more ideas of sailing lessons or moving to Panama. But sometime soon... I don't know when, I'm going to somehow get rid of what little remains in the way of possessions, put some clothing into my car and leave. I can't, just can't stay here and pretend that this life goes on, just a little changed. I have no idea what direction I'll go, much less where. But I'll just be another unemployed and lonely old man on the road. I always thought I'd end up lost and alone; just didn't anticipate the route that would lead me here.
“I have to leave this and these people or I'll not survive. I need a big dose of amnesia, and there's no legal way to get it. I don't even know if there's an illegal way.
“I'm so tired of crying. The only escape is sleep, and I now sleep twelve to sixteen hours a day. I wonder if prospective employers ask how much you sleep. I wonder if they can ask whether I've ever had psychiatric care or am taking medications.
March 16, 2006 - Living With an Impostor - Tucson
Randomness
I've been trying to think of a compelling reason to keep living. Usually, I'm depressed, but that is old hat to me. I continue to have periodic anxiety attacks of varying severity, which I can only control by the use of medications. I also have a sort of modified version of narcolepsy, in that I am often seized by an irresistible urge to sleep, several times a day. At sundown, the loneliness begins to settle in, and I'm running out of ways to combat it. By bedtime, though I may be exhausted, I often can't sleep, and my mind drifts toward the big questions and my eyes brim with tears.
People I know try to help as best as they are able, and for that I thank them. But most of them know as well as I that there are no easy answers.
If I weren’t self-employed, I'd have been fired long ago. The weather patterns in my brain are what they are. No one would ever hire me now, so I either continue to paint when I can stay awake and focused, or just give up. I've been able to discern no compelling reasons at all. I have no comfort, nor will I allow any to be taken by me. I'm tired of being a burden to those I love. I'm tired of the tears. My plans are wisps of smoke on an autumn breeze. Remember the wonderful smell of burning leaves on a cool autumn night? Oh, I do. Burning leaves is now against the law.
I arise when I wake only out of habit or because of nightmares.
I'm tired through to these bones that no longer support me so well. I see Ophelia weighed down by stones, drowning. Perception is reality. Luck happens to some people, sometimes. Miracles don't. I've learned that it IS possible to be a good man from the moment you decide to be one, but that the struggle must be for its own sake: there will be no reward.
My time has not yet come, but it draws nearer with every breath and tear.
Friday, March 17, 2006 - Living With an Impostor - Tucson
The Play
This was supposed to be a play in three acts, or perhaps four; the playwright/producers couldn't seem to decide. But it got to going on too long. The players began repeating their lines and everyone became bored, leaving, one by one. Finally, someone thought to turn out the lights, but I remained, rooted to my mark. A black cat named Tut, that frequented the theater on nightly, inscrutable explorations, would occasionally stop to rub against my leg and make a typically obtuse comment or two. Sometimes, I would speak a line or two to myself. But the play was over by default, and I knew that all I had to do was walk out the door. It was darker than night, though, and every door I found was locked.
I'm there now. I can't seem to come out, but I won't let anyone in, either. It all seems terribly wrong. I don't know why I'm here any longer.
Tuesday, May 02, 2006 - Living With an Impostor - Tucson
Affect
The State is making us get a divorce, you know. I love my wife but can't be with her without breaking down. Still. I had to file the papers. She had to sign them. Sixty days or so, and it will all be done. She has her house now, and it fits her well. And she has her younger daughter to care for her. I'm too weak. Must be all the crying. But, for the past couple of days, I seem to have lost all affect. I don't know whether or not it is because I've given up. Perhaps. I have realized that I am really alone now. Again. The world goes on apace without me, as certainly it would and should. I have a few friends, but am, I fear, too unpleasant a burden for them to bear much longer.
I've always ever only really wanted two things in my life: a home and a loving wife with whom to share life. I had both for a while. Now it looks like I may have neither. Oh, the home could be anywhere, but a home without love is unworthy of pursuit. That's what gets to me. I've pursued neither fame nor fortune-only love. I thought I'd somehow skate by just under the wire and avoid the real horrors of life. But the wire was lower than I'd expected. I can't compare tragedies. Torture and murder in war. The horrors of disease and all the other tragedies that afflict so many. I've not known those. I've not had a child die in my arms, nor been forced to witness some unspeakable horror. But this is enough. This my personal torture, and the only one I know. And for me it is enough... too much.
For the past few days I haven't cared. I've been the walking dead. I am more alone than I have ever been, but it is not enough. It is not enough punishment for not being a better man. I should have been stronger. I should have been better.
But the bar was set too high, just as the wire was set too low, and I seem to have failed all 'round.
Maybe I'm just getting what I deserve, or what I think I deserve. I have an appointment with another psychiatrist in sixteen days. I wonder if I'll go. I wonder if I'll still be here.
I never was any good at being lonely.
May 27, 2006 - Living With an Impostor - Tucson
Can't Get There From Here
I've not been answering the phone for a few days. Mary and her daughter were here a few days ago, and being with Mary really knocked me for a loop. I'm so tired of being me. All of it.
I've pretty much alienated everyone who has bothered to try to help, but it is to be expected, I guess. No one can know what this is like, and it is unreasonable of me to expect anyone to.
Anyhow, the gun is still holstered. I'm hanging in for a while, yet. Don't know whether my options have really run out or just seem to; this is like a waking nightmare, and I'm at the mercy of the chemicals in my brain as they fight their own heartless battles, unaware that there is a mind there too, feeling every movement and blow. I so want to be happy and at peace with myself. I just can't seem to be able to get there from here.
May 31, 2006 - Living With an Impostor - Tucson
ECT
I've now been on Cymbalta-the-wonder-drug for two weeks with no apparent improvement.
My sleep problems continue, apparently unaffected by The-Wonder-Drug-Rozerem.
Mary is getting depressed and anxious and semi-suicidal.
Her daughter is bearing up remarkably well under the pressure, but is starting, now, to ask for help.
Mary is scheduled to come under her daughter’s guardianship on or about the second day of June.
The divorce proceedings are proceeding down their course, and I expect that I'll be single again within thirty days.
I continue to look for a place to live. Now looking at New Mexico and Texas.
My therapist agrees with me that we should discuss ECT, and I see the shrink about that tomorrow morning.
Other than that, everything is just great! Never been better! Every thing's coming up roses for me and my gal! Oh, what a wonderful world!
So, saw the shrink and am now taking yet a higher dose of Cymbalta-the-wonder-drug that seems to have no effect on me. I am an experimental animal. The stuff was supposed to start working a week ago. Not a problem, I guess, since if we reach toxic levels, the liver failure should kill me. Meanwhile, I'm in the loop for ECT (Electroconvulsive Therapy)-which some would have me believe will rob me of my memories and cognitive ability. That sounds pretty good as a downside; should have thought of it sooner.
Mentioned to the psychiatrist that she should write a paper on a new category of depression, beyond episodic and chronic: habitual. Depression has become me; I have become depression. It defines who I am, and the thought of not being depressed is really scary: I won't know who I am.
Meanwhile, my new email signature: "Trying to run great software on a hinky bio-computer? A 9mm hole in the CPU shield may be your best option."
June 02, 2006 - Living With an Impostor - Tucson
Go Figure
At some point earlier today, my younger stepdaughter became the legal guardian of my wife. At some point later this month, my wife and I will no longer be legally married. I still love her, and she says that she loves me.
Go figure.
June 25, 2006 - Living With an Impostor - Tucson
Noises
Sometimes, when I am sleeping, and sometimes when I am awake, I hear, I'm sure of it, noises from downstairs. A knock. The bell. The scratchy hum and rattle of the lock on the door. Enough to wake me. Enough to make me check.
July 13, 2006 - Living With an Impostor - Tucson
Ex's
All my ex's live in Tucson. Have never said much about the first one; a short marriage apparently aimed at getting her money enough to live away from her daddy, at my expense. Yes, there is a deep well of bitterness here. For my own good, I try not to drink from it, and am mostly successful.
But now Mary is my ex-wife, too. Sad. I'm currently living in a small bedroom in the house I purchased and signed over to her. I'm sort of a live-in handyman and has-been artist trying to reinvent himself yet again. I've lined up a place to rent near here for a year, if everything works out. Yeah. Like I should suddenly start seeing the glass as half full.
A couple of weeks ago, Mary asked me to kill her. Think about that. Think about it!
She went on a trip up to Sedona with her elder daughter and her family but is back now, days early, complaining of not being able to sleep. Sounds like me. My own sleep cycles are growing short again, and I am often up at all hours, any hours.
The shrink has decided that my need of very large amounts of drugs to get any effect is due to my liver and high rate of metabolism. I'm at 200% the normal dosage of Cymbalta and still need at least 4 milligrams Lorazepam to even take the edge off the seemingly constant anxiety. And now I have constant indigestion. What with current trends, I assume that the Cymbalta will require yet higher dosages and then fail altogether. At that point, I've decided to go directly to ECT for relief. After some forty years being chased by this black dog, I've grown weary, I guess. I don't want to die. I want to live in love again, but who knows what tomorrow holds for any of us. Perhaps ECT will reshuffle the deck in my brain chemistry sufficiently to give me hope.
This will be, if nothing else, an interesting ride. Of course, if my condition worsens again before my condo sells and closes, I'll have no money to pay for the requisite tests or the ECT, which leaves little room to maneuver. In that case, suicide is likely, though not at all certain. I've always maintained that I've never threatened suicide and never will, and that still holds true. Just say it is always on the table. An option. No more; no less.
I began this post some weeks ago and never got it online. I guess tonight is its turn.
August 31, 2006 - Living With an Impostor - Tucson
Heartbreak
I've moved from the little room at my wife's house (she has let me know that she doesn't like me to say "ex-") into a small, three-bedroom rental about four blocks away. I had first thought to move far away, out of state or country, but in the end decided that right now I should be near her. It remains to be seen whether or not that was a good idea. I live mostly as a hermit lives, venturing out only when absolutely necessary. I eat a lot of peanut butter and jelly sandwiches and potato chips. Great diet, but I don't seem to care any more. No more cholesterol tests for this baby, no. And not a colonoscopy in sight, and no other tests, either. I don't like or trust most doctors, and my expensive health insurance doesn't cover what ails me, since they don't believe in things like depression and psychiatry and psychoactive medications. So I'm trying to let that lapse. Of course, they still manage to debit my account even after I failed to renew within the prescribed time.
By my own estimation, I have an enlarged prostate (weak stream, you know), need a crown replaced, along with some other dental work, and other than the fact that I know how much of a drop it will take me, at my current weight and body type, to insure that my neck is broken if I decide to hang myself, I'm a generally healthy 59 year old fool who, without working medications, would probably just wither like some dope-on-a-rope. I tend to work twelve hours a day and wander around the house trying to stay awake until 10:00 PM and bedtime. The shrink has advised me not to watch the news any longer, since all of the news, the people in it, and the people presenting it drive me nutty. Har. They make me angry, and I don't like being angry at the world.
My stepdaughter (the younger and now my wife's official guardian and conservator) brought my wife here this afternoon for an overnight stay. Seems the stepdaughter's dogs were making Mary crazy. She has a yapper and a woofer, and both can be, whether solo or in unison, a terrible onslaught to the ears. This is especially true for my wife, who has always reacted poorly to any unexpected, loud noises.
So, she came and stayed, and we watched a full afternoon of the US Tennis Open together, which she loves and I hate, both with about equal passion. Old man Agassi won, of course. But my story lies in another direction entirely. It has been a few weeks now since I've spent more than a few hours with my wife, and it is painfully clear that her decline is accelerating. Because she cannot link objects or ideas well to words, most of our interaction is rather like a game of charades. I win about 50% of the time, and we both lose all the time. Every time I see her, she speaks of Belize. She wants to go back "for a visit," she says. "Maybe when I can afford to," I say. I did sell the condo we had lived in, and that made me cry. And I got over $200,000, which was nice. But $56,000 immediately went to the stepdaughter in charge as the remainder of a $100,000 loan I promised back when we had over half a million in the bank. Another fifteen grand is paying off the credit cards I've been living on pending sale of the condo, and another fifteen will go to my new landlord (my first ever, actually) —paying my rent through the next eleven months, I think.
That which is left will go to pay for my incessant stream of PB&J, utilities, and my Internet connection. All beyond that will be used to help me try to start my career again. Living on a fixed income isn't really so bad if it's three to $4,000 per month. Or even $1,000 per month. But I have zero income. Zip. Nil. Nada. And the government can't see that I didn't end up in this situation by being frivolously extravagant. No. I ended up this way because I wanted to see that my wife might somehow still benefit from our many years of hard work.
She tells me she's sorry. She knows her brain is slowly disintegrating. "We just have to play the cards we're dealt," I say to her. But we both know and we both cry.
September 04, 2006 - Living With an Impostor - Tucson
Hamlet
I've been sitting here alone, trying out the features of a 3D modeling application and reciting Hamlet: Act two, scene 3, as I recall; the soliloquy. Memorized it over forty years ago. Special meaning now. My life has run a little longer than I'd expected, and though I doubt that it is possible to die from neglect, anxiety, loneliness, and confusion, all rolled up with mega-doses of anti-depressants and mood stabilizers, I would be winning the race on that one. Mary spent two nights here, hurting because of barking dogs and missing all those things that have gone away: Belize (she wants to go back), painting, reading, knowing which button to push to make the microwave work. Remembering how to call me. Oh, and it hurts me so much, too! Mary’s younger daughter is angry because she has no life. I'm just angry with most everyone and everything.
Money, lots and lots of it, might provide us with more options. So it is either millions or death.
They say that if you abuse your friends, you won't have any. Most of mine have been fairly abused by the truth, so they are long gone... even the oldest and closest. One call. One visit. Never another call. Never another visit. I understand, but don't have to like it. A few try really, really hard, and I try to give them all the positive I can, but some days are just too damn hard.
September 10, 2006 - Living With an Impostor - Tucson
Four o'clock in the morning
Here it is, 4 o'clock in the morning. I've been drugged to the hilt and in bed since eleven, dreaming hard dreams, full of anger and blood. Five hours of ragged sleep. What use is it?
Seems I am coming to the sharp end of things, whether I like it or not.
The pills I'm sold no longer even touch my anxiety at four to eight times the usual dosage, and I am filled with an anger almost as great as any before. I think the ECT guy is ready. My shrink wasn't. I'm past ready.
The sharp end of things. Saw that in a book I was reading last night. I always thought the bare bodkin would be the ultimate way to depart: bloody and horrible for all.
What path this night has set me on is unknown to me-and terrifying.
September 14, 2006 - Living With an Impostor - Tucson
The Forest
Life happens. And sometimes we find ourselves on unexpected roads in unfamiliar forests. I am on just such a road now, and though this trip was unplanned, it is never the less of my own making, since I remain at heart an existentialist, and hold myself wholly responsible for the man I've become. But the road is dark, and the forest seems fearsome in its silent, black hood. The black dog dwells there, and I can sense him watching me. My arrows were long ago spent, and I have neither armor nor shield.
September 18, 2006 - Living With an Impostor - Tucson
The End
This will be the last post on this blog. Its utility has run out, I think. After all, I am no longer, due to the divorce, regularly living with an impostor, and I'm no longer her caregiver, that job having fallen to her younger daughter.
I've been seeing a psychiatrist and a therapist, taking massive doses of anti-depressant and anti-anxiety and other drugs in order to better cope.
But that's all over, now. You see, I finally figured it out. It's a wonder it took so long, but I finally realized that nothing really matters in the long run. My wife will die one day, as will I. Her genes will carry on through her children and grand children, at least for a while. Mine won't, because of choices made many years ago, and because of others made just a few years ago, and because of circumstance. But none of that matters in the long view.
My father taught me to try to look at my current travails from the perspective of ten years in the future. That was good advice. But at this point in my life, there are probably not another ten years for me. So I pushed the boundary out... way out to a hundred years. Then a million years. Then many millions.
Oh, what a fool I've been to think that any decision I make today will make a difference in the long run. I've been living the present without even a nod to the millennia ahead. It is a utilitarian deceit, the first law of self-importance, perhaps. But my problems and I are nothing compared with the great, mindless churning of this earth and the galaxy and universe within which it wheels.
What a fool I have been! And such fools are we all. Hamlet "spoke" of "enterprises of great pitch and moment," but he too was trapped in the daily grind. Nothing matters in the long run. Neither you nor I nor any of the billions that have lived and died before us, nor the billions who may live and die yet, will make one iota of a difference in the grandest scale. Oh, we can do good or bad; we can help or hurt, and we can bring misery or joy to millions, but this too is of no consequence at all as the universe continues its mindless race against time and space.
So, thank you for your readership and your sympathy and attempts to understand and help. I've appreciated it all. But this is the end, now. Another depressed man has written another depressing chronicle of unhappy events in two lives that will soon come to naught. For those of you who take solace in a higher power, take all you can. For those like me, who have none but themselves to look to for solace, fare well. None of it matters.
The excerpts that follow are taken from a blog I maintained somewhat haphazardly during the months November 2006 to February 2007. They are included here because they reveal something of the flavor of my depressed self during that time. This period was without doubt the most difficult through which I’ve yet to live. I assume that the depth of this depressive episode was triggered by the great anxieties I had faced over the preceding years, the greatest of which was, of course, watching helplessly as my wife slowly began to evaporate before my eyes. The feelings and thoughts expressed in these excerpts are in no way exceptional. In fact, there seems a repetitive, redundant focus shifting back and forth through the entries. But they do reveal something of the battle that raged within me and the all-consuming self-centeredness and self-destructive, circular thought processes of a severely depressed mind. They also hint at, but do not describe very clearly, the process my mind followed in attempting to find relief.
Millions of others have trod this same path and some will see a bit of themselves in these words. Others cannot imagine the depths of loneliness and fear. So these passages are included here not as instruction regarding the nature of depression in general, but as a window into the soul of one particular man who found himself brought to the very threshold of death by the workings of his own brain. I survived those times, and this fact continues to be a wonderment to me. Witness:
It is interesting to me, now being essentially off of all meds. I've taken a moment to observe my life today, and it appears to me thusly:
I currently fit well within the guidelines for an impoverished family of one, at least in terms of income. How odd.
I find no joy in life. None at all. I work hard all day doing the best I possibly can to make good art and to sell it, and it is not ever its own reward. Not only are things not selling, I have a hard time giving things away, and it is costing many dollars a month to do what I do. Some say it will just take time. Maybe. Maybe not.
I no longer enjoy reading the things I used to; stories about the future seem vapid and meaningless. Those about the past were others' lives in other times. Nothing there for me.
People watching. Hmmm. Maybe I should be in a different place. The people I saw at the pharmacy today didn't seem to be worth the space they were taking up.
I used to enjoy building things, kinda. But that is a for-the-future enterprise and holds nothing for me now.
I must have been somewhere else when all the applause started and ended, because I hear none now.
But the really disturbing thing is that if I should suddenly not be depressed, what would I have gained? What would have changed in my life?
These are the thoughts that prickle the backs of my hands this evening, and I don't know what it means. Or I'm afraid that I actually do know already.
Perhaps the black dog that followed Sir Winston and so many others has just been biding time because he knows he's already got me; he awaits the strike at his own particular whim, not mine.
I have received, of late, several direct email responses to some of my blog entries. This is fine, but the blog format allows for public discourse and dialogue through its comments function, and I think that my entries should be seen as openings for discussion rather than simply my own musings set adrift in the aether. Always respectful of privacy, I hope, I think it would prove useful to excerpt some of this mail herein, because truth is more likely to be found somewhere within the thread of discussion than in self-absorbed pronouncements, of which I am admittedly guilty.
I would argue, in fact, that many artists are self-absorbed, as are most depressives. It seems rather a natural state of being for me, as I continue to sabotage the efforts of my friends and family. This morning I awoke to the stillness of my rented house, listening to a clock chime somewhere across the distance of surrounding city, and even the moaning of a train whistle carried for many more miles. No pet to greet or feed or walk. No lover to admire from mere inches. No job to do other than move the blue recycling bin to the curb: quickly, so as not to be seen or greeted or questioned. I continue to foster this climate all of my own and my own doing. And then there was this:
“I don't know if you remember me, I'm the guy who wrote to tell you all about my own painful mental health journey and a few things (I think) that I've learned along the way. I must admit though that your current blog entry really hits home for me. You do have some advantages over me in the fact that you can count your friends "on the fingers of one hand." That is one hand's worth of friends more than I have. I am married and have family in town, so I'm not totally devoid of any social network, but being a social phobic to one degree or another for the majority of my life, has tended to keep my list of friends very short. At some point, people just stopped trying to involve me in social events when I always had some excuse as to why I was unable to attend. When you don't cultivate friendships, they just don't grow. Anyway, I guess the number of friends isn't so important as whether or not you believe the number is adequate. I have no one to blame, but myself. In your case, I suspect that many would be friends are turned away by your relentless negativity.
“I feel like I have to fight off feelings of "is that all there is" all the time and I have a lot that I should be grateful for. I believe I have been peering over the abyss and haunted by the "black dog" for as long as I can remember. It is very much a constant process to try to focus on the half-full part of the glass. I have noticed (and you probably wouldn't honestly argue with this) that you don't seem to make much effort to redirect your thoughts in this manner. You seem to habitually judge or critique everything and everyone in the most negative possible light. Your feelings are following your thoughts, not the other way around. You ask if you "should suddenly not be depressed, what would you have gained? What would have changed in (your) life?" I suggest to you, that it is the other way around. What would have changed in your life is that you would make a choice not to see everything in such a negative light and you would (gradually) become less depressed. Feelings and even brain chemistry will follow actions (i.e. an active and committed effort to reverse the way you think about things). I sometimes succeed at this, but often it is a struggle.
“You may have tuned me out by now, but your blog prompts many thoughts, questions and observations for me. Was it the discovery of the new gicleé form of producing your art that prompted you to quit painting as you had before? I completely agree that what you are doing now is very creative and some of it is very appealing, but the subject matter for the most part is not what people familiar with your work are used to. You may have been in a creative rut before or whatever, but in many ways, it is almost as if you are starting over as a new artist. One almost has to be told or see the signature in the corner to know that these new works are your creations. I'm just guessing, but I think it is likely that fans of your old work will not necessarily be similarly attracted to your more recent efforts. You may, however, find that in time you will have appealed to an entirely new audience. If I were you, the question would be whether or not I could essentially "make it" all over again as a new artist.
[Clip] “I was recently at the Tucson Museum of Art with my wife and in-laws from Philadelphia who were here visiting for a couple of days. We saw some of your pieces in the gift shop. I would not have known that they were yours if I had not seen them on the web. I was surprised at how spectacular they looked, because they come out so much better "in person" than when one views them on the web. [Clip]
“PS I think you can be helped by a psychologist/psychiatrist working together (see previous email). Of course, it won't likely help much if you decide to leave their office without seeing them. You could also be helped by books such as the one I mentioned in my previous email."
I find little to argue with here, but I do have a comment about the half-empty/half-full glass issue. From my exquisitely designed perspective as the woeful, depressed, and self-absorbed artist, I will merely state that my half empty glass approach to life has been part of my nature for as long as I can remember. Truth told, I think that the half empty glass nature of my world should be as self-evident as the fact that desert bark scorpions are dangerous. It is part of their nature. It is a survival trait. I spent about thirty years trying to fill up that damned half empty glass and thought I was making great progress. And then, as though an inept Hogwarts pupil casting an inappropriately worded spell, I saw it evaporate into a damp residue coating just the bottom, all because of a diagnosis, or misdiagnosis, and the machinations of a State apparently hell bent on leaving me with nothing. This is, in my view, a reasonable perspective. A habitually happy person would see things differently, I presume, not because of any fact, but because of their very nature. I have come to irrationally despise HHP (Habitually Happy People) —but that is certainly within the bounds of what one might reasonably expect from an HUP (Habitually Unhappy Person)—e.g. me. I would argue endlessly this point with anyone holding a contrary view, as the religiously insane once argued about angels dancing on pins, and just as pointlessly.
As to my walking out on the shrink (or, actually, refusing to walk in)—I consider it hubris of the worst kind for any doctor to consider their time more valuable than mine. This hubris is compounded by the failure to explain their tardiness, or apologize in some way after-the-fact, or have some one of their minions do so for them, their time being so valuable and all. I am punctual and always have been. Guess that is also part of my nature. And though it may be unfair to hold others to standards to which I hold myself, I tend to do so, especially when those people purport themselves as professionals in any field. I am not unreasonable, I think, so much as I am unwilling to compromise my standards for anyone who should be fully aware of what constitutes acceptable and unacceptable behavior.
Finally, as to my art and the changes evident therein, it is all true, and I seem to be starting all over again (shudder)—but with what one would assume is a wealth of knowledge and insider information garnered from some forty years experience. I believe that I have conceived of and am in the process of implementing a brilliant form of new, totally digital work. Once it has built a full head, it may make me a wealthy man. But I doubt that I can claim it as my personal intellectual property and file for patent protection. Why? Because my glass has no more than that slippery sludge coating the inside all along the bottom surface, reluctant, apparently, to draw itself higher through either osmotic pressure (or negative pressure) or even molecular attraction sufficient to help it climb that circular, toothless, transparent wall.
I have of late been corresponding with one of those few friends I can count on five fingers. We decided that my most recent missive might well find a broader audience if posted here. Thus:
“Well, now you've done it! I almost started crying, so got up and paced for a bit. I knew there was much to your story that was never mentioned. I've also known all along that you were smart enough to realize that what's good for the goose may not be at all good for the gander, or vice-versa. I now know that it takes two to three to four times the amount of meds to have ANY effect on me as it does regular depressed folk. I'm astounded at what's been pumping into my system, and the dosages it has taken. You know those new sleep wonder drugs like Lunesta? Been there. Under shrink's "care.” Normal dose: one pill. Nada. Next night, double the dose. Double the nada. Next night I'm up to three. Nadanadanada. I tell the shrink it is as though I am swallowing little pebbles. I feel them hit the back of my throat, get washed down the gullet, and they're done. Why pay the big bucks for pebbles? And the shrink nods.
“So now, due to her irresponsible tardiness and general lack of compassion, Shrink number two is Historical. New general practitioner, about our age (well, our decade, maybe, or one later), recently divorced, wearing witch's costume for Halloween. Now she's in the mix. The ECT guy thinks I'm addicted to lorazepam. Nope. I just happened to mention to the other doc that at 16 milligrams I'm still walking and talking. So he gets the idea that I take 16 milligrams daily. Nope. Once or twice over the past year, I've needed that much to quell the panic attacks. So, just to be ornery, I threw out the Rx refill the GP had ordered and "weaned" myself off it two nights ago with 4 milligrams. I'm done. I see the GP again this afternoon and find out what miracle lies ahead this time.
“The notes I'm making along the way are just self-therapy disguised as weblog, I think. I have to do something. I do wish you'd contribute more publicly, even if anonymously, because you know all are different and are never preachy. I can get pretty damned preachy at times, and it is usually to the choir.
“Of course, people have this morbid interest in artists and their tortured souls. My Mary (of all people) says I have a tortured soul. Maybe. But I do have this weblog thing going, and it seems to help (me? others?) more than hurt. Just my point of view and belief that every person in the world has a birthright to declare whatever they want about the nature of and relative fullness or emptiness of their glass. It IS THEIR glass, after all, and I know more about the state of my glass' emptiness than anyone.
“You see, the trick for me is to stop caring any more. When I don't care, I'm cured. And even with the ECT on the near horizon, I have no expectations.
“I do know that some day I'll simply not care any more, not even if I miss my true north by that divided second. And that'll be my day to die. I have no plans. I tell people I have no plans. But that's probably how things are going to shake out for me. After I'm convulsed (no one dares guess how many times at $1,200 a zap), maybe I'll be different. Maybe not cured, but different enough to care about something. Maybe different enough that my compass realigns with those weak lines borne of Earth and time and warping space.
“Being the existentialist that I am, I have a congenital free pass out of the game any time I want to go. And what freaks people out is that they know I know, and they know I'll use it, too, the day I find I just don't give a flying fart about anything at all any more. My existence preceded my essence. I had no say in the existence part, but have full and indivisible rights to the essence part. I have made myself into me, given the chemistry I've had to work with. And it helps to know that one hundred billion or so have gone before. One more will hardly be noticed.
“Over the long haul, we tend to revere the artists rather than the politicians, and that's the only reason that I'm still doing art at all. I leave that part of what I made of myself when I die, and I'm likely to be judged long after the fact of my death brings a tear to any eye. And, if that's the case, I do wish fervently that I have left behind something of note. Even if it is just that one little miniature gicleé. It will be enough that I believe it to be enough.
Having survived another night of weird dreams and a fasting blood draw, and having nothing of great import to say, I thought it might prove amusing and/or instructive for me to try to create the semblance of a meaningful list of words which fairly and accurately describe me. Fatuous self-absorption at its most disgusting level. Those of you who know me personally will likely chuckle or nod, agree on some and disagree on others. As for those of you who know me only by reputation or the misapprehensions of Google may likewise agree or disagree, but you'll just have to take it on faith that what I say is true. If one word doesn't seem to suffice, I'll use more. That is the crux of authority, after all.
eccentric
thoughtful
a geriatric, late-blooming clothes horse
painfully honest
sometimes vapid
trending always toward addiction of one type or another
generous
self-absorbed
creative
demanding
critical
able to hold a grudge longer than any other living human
forgiving
trending backward toward the sophomoric in writing style, and at times painfully verbose
inquisitive
trending toward political conservatism, not by choice, but by the horrors of liberal political correctness
independent
needy
iatrophobic (fear of doctors)
intolerant of stupidity
rationally fearless of things physical (e.g. good to have around during emergencies)
irrationally fearful of having lived a meaningless life
argumentative
increasingly agoraphobic
clinically depressed
occasionally witty
occasionally inscrutable and deadly to conversation
occasionally impossibly irritating
attentive to the needs and wants of the love of my life, in spite of the demands of State-imposed
divorce
currently prone to tearful outbursts and apparently irrational behavior
tired of living, but not skeered of dying
That's a pretty good start, I believe, and a harmless bit of fun. I recommend the exercise highly.
Following is a message just sent to my younger stepdaughter, which gives an accurate account of current news from the front. Some details have been omitted or changed to protect her privacy.
“I know that you have problems of your own aplenty, and none of the following is actionable on your part, but FYI only unless you decide otherwise.
“I saw the new General Practitioner again yesterday. She became concerned when I announced that I had not taken any lorazepam for 48 hours, insisting that I might have a seizure within another 48 hours due to withdrawal, and insisted that I immediately begin to take yet a different drug, clonazepam at the rate of 4 daily doses of 1 milligrams each and see her again in a week. So I got it and am doing it. I am trying to develop a good relationship with her. She suggested that I read "How to Survive the Loss of a Love" and was astounded, I think, to discover that I had already read the book, and many other self-help books over a quarter century ago.
“I had a fasting blood draw this morning and yet another EKG yesterday, all in ‘preparation’ for an eventual ECT treatment.
“I purchased and am using a better chair for the office. This means that I have a spare office chair should you need one.
“The reason that I have not been over to deliver the things I have been accumulating for you and Mary is that I continue to have seemingly spontaneous, out of nowhere, unexpected anxiety attacks complete with bouts of sobbing and incipient hyperventilation. This, in spite of my adherence to doctor's orders, attempts to keep myself busy and mostly fruitless attempts to ‘think positive thoughts.’ These seem to arise unbidden from nowhere, and they are a horrible thing for me to experience, and would not be a good thing for Mary to witness (or you, for that matter) should it happen while in her (or your) presence.
“Apparently my stress level is so high that my normally tolerable back pain is jacked up to intolerable levels after sitting or standing for three to four hours. At that point, I am driven to take a ‘recommended’ dose of ibuprophen and lie down for an hour, which temporarily relieves the pain but also leads to sleep, which I try to avoid during the day in hopes of sleeping at night.
“In spite of my intention to have no phone, which has proven pleasurable for the most part, I have ordered another installation, which should occur next week some time. I did this because I want to be able to contact the doctor for some guidance the next time I'm hit with these things, though that is probably wishful thinking on my part. I am also amazed at the number of companies and websites who assume that every living person has a phone and requires that information ‘for verification purposes’ even though it is in almost all cases purely a matter of gratuitous and irresponsible data collection. I hope to have voice mail disabled, and use an answering machine if possible, as a call screener. I was sick and tired of the two or three misdialed calls I was receiving daily.
“T.P. will be here to discuss business and the simultaneous virtual openings project on Monday or Tuesday afternoon. The housekeeper is scheduled to appear tomorrow, unless she begs off again.
“Due to your delayed opening, it may be that you need access to more cash. Though my reserves will likely remain on the decline I do have money now and would gladly give more to you if requested.
“I know that I am a difficult person at times. I know that. But it is not congenital. Right now, it appears to be a survival mechanism of some sort, which is interesting as well as disturbing to me. We are all doing the best that we can.
Last night was fairly typical for me. I had terrible back pain due to age compounded by stress, I guess, so early to bed. Well, not early, but bedded down and trying to sleep by 10:00 PM. No luck, and by about 10:30 PM I was experiencing the now well recognized precursors to a panic attack for me, so it was out of bed, wobbly from the mirtazapine, and to the computer, where I worked at adding a different polling system to my website. By midnight, I could hardly keep my eyes open, so back to bed. Ah, sleep! Uh-oh: nightmare number one for the evening. The dream obviously triggered by daytime events, and all about my not-so-ex-wife and her dementia, my backache, and suicide approaching like a fast freight train. Heavy breathing. Tears on cheeks. I'd been sleeping for an hour and a half. It was 1:30 AM.
So out of bed again and back to the computer. By 3:00 AM I was again ready for sleep and went back to bead. Ah, sleep! Uh-oh: nightmare number two. Same subject, mostly, but no backache this time. Entirely new and novel story line. Eyes flying open. Heavy breathing and cursing the night loudly enough to frighten the neighbors, I expect, I roll out of bed again. It is five thirty. So two-and-a-half hours of sleeping and terror that time. I got dressed and am now back at the computer. I have no plans to try for a third attempt tonight; the housekeeper will be here in a couple of hours, all rested and cheerful, anyway.
My life and welcome to it. I've been living like this for many months. I look forward to bed because being horizontal tends to ease the physical pain, but I dread sleep and the denizens of my dreams. I'm quite sure that not all depressives suffer this in the same way, but damn this is a bore. "Think positive thoughts!" say the self-help books. Yeah, right.
So you see why one day I'll likely and with good reason just say to hell with it all. If this is going to be my life, then to hell with it. And that will be the day that I die. D-Day.
Only 4 sleep cycles last night, and it is now about 5:00 AM. Nightmares, but no real nascent panic attacks, so I only got out of bed after the first one, determined to stick it out. I got my usual four to four-and-a-half hours of sleep. Am scheduled with my brother for a 10:00 AM brunch, so may try for another hour of sleep some time prior to driving over to that.
See? Not complaining. Though as I was trying to bed down for the first time I had the unusual and awkward experience of singing a made-up song about the battle of St. Crispin's Day, having just added a new signature to my emails with Shakespeare's famously fabulous speech as he imagined it to have been uttered by Henry V.
This is not my normal habit, and though I'd have appeared pleasantly drunk to anyone happening upon the scene, I was merely tired, I think, and though drunk with those wonderful words (of the famed bard, not I) it must have presented some obscure and unbidden service to me. Ah, well.
At around 5:00 PM, I made a small and (I assumed) benign supper. An hour later, I was on a ride through the fringes of mental hell, and scared. Not good.
I couldn't stay still. Some part of my body was always in movement, whether it be hands or a bouncing leg or something else. I was talking to myself. I was struggling to think coherently.
My back, thighs, and calves hurt. I couldn't concentrate. My mind was flying, looking for answers that weren't there. The recurring thought and conviction I had was that this must be what it feels like to go crazy. I have no phone so couldn't call anyone for help. Besides, a call while in that state of mind would have frightened the hell out of relatives and neighbors alike. Driving to the ER was a non-starter because I was convinced they'd just lock me up and then sedate me into oblivion.
What did this to me? Why right now? Why, when I had been feeling relatively good for the first time in a long time?
I don't take MAOI's and never have. Right now, I'm taking clonazepam at the rate of 1 milligram four times daily, and 30 milligrams of mirtazapine nightly. Neither drug is an MAOI. Clonazepam is a relatively benign anti-anxiety med, and mirtazapine is to elevate my mood. They heretofore seemed to be doing what they were supposed to do. I had not overdosed. I had not suddenly changed meds. But I must have done something different. There must be a variable. So thought back to my meal. It was simple: a grilled cheese sandwich using white bread, some "I Can't Believe it's Butter,” and two slices of good old processed American cheese. I hadn't had one for years, and none of the ingredients seemed inappropriate or threatening. Oh, and it had all been washed down with the remains of a chocolate shake from McDonald's that I had kept viable by placing in a bowl of ice and water in the refrigerator the night before. There was still a bit of Ice in the water when I pulled out the cup, and it was cold and sweet.
So I'm now guessing that the cheese must have caused my temporary trip down dementia lane. It was not aged cheese. It was the individually plastic-wrapped American kind of stuff that I grew up to think of as real cheese. My working hypothesis is that a person with Lee's Disease (or, perhaps more appropriately, Lee's Syndrome) is likely to be a victim of an ill-understood consequence of the "cheese effect" written about in the medical literature and popularizations thereof, though only appearing in relationship to aged cheeses and MAOI's. I had had American cheese on a Big Mac the day before and suffered little symptomatic consequence, but the grilled cheese sandwich presented the substance to me in relatively high proportion compared with other ingredients of the meal. This is a hypothesis that I will not experimentally verify without a doctor standing by, so it is only really an educated guess.
But the effects were frightening. I have since discovered numerous references to the "cheese effect" in online publications, and doing a Google of the term can be enlightening. By 10:30 PM last night, the symptoms had essentially disappeared, so my only end result was another typical night of disturbed sleep/wake cycles.
You can sell people almost anything if you can convince them of either one (or both) of two things:
If they care about neither of these things, you need to convince them that it is good for them or in some way important to them personally. It is up to you to figure out what personal desire, concern, or idea drives their basic self-image.
My emotional roller coaster seems to be slowing and coming into a station. I am thinking more clearly. I am sleeping longer; I have experienced NO panic attacks in 24 hours.
This prospect thrills me, although the ride itself has been elementally frightening. Whether or not I'll be able or allowed to get off is unknown.
In my particular situation, there is an ethical downside to this. I'll tell you what it is, but not right now; you have to think about it, first.
Saw my secnod ex-wife, who is still the love of my life, tonight. She has given up, and I strongly suggested to her daughter and guardian that she contact her mother's doctor and let her know that Celexa isn't getting the job done. I can only hope it happens soon, because she was sounding suicidal tonight, saying she just wants to get it over with.
Many simple tasks are now apparently beyond her but she doesn't want to be institutionalized any more than do I, and she is immensely sad that she cannot cope with life any longer. She knows what she used to be able to do but can no longer do, yet she has none of the "disconnectedness" of typical Alzheimer's sufferers which shields them from self-awareness. That is, perhaps, the biggest tragedy.
We held each other and cried a lot. We both seem helpless at this point. I tried to tell her about all she had in terms of people loving her and such, but it didn't seem to help.
I decided that if Bubba Clinton (born one day after I was and in the same state but a year earlier) were here and said, "I feel your pain!" —I'd punch him out. No one feels our pain any more than we feel his or hers. I got the ethical centeredness, and he got Hillary, the Great Enabler. He became The Prez, and I became me. I won.)
Sorry about the outburst, but I'm mad as hell, and the Clintons are as good targets as anyone. Perhaps I should just shout into the wind.
After my strange "I'M GOING CRAZY!" attack a few nights ago, I added something new: sublingual melatonin. It was really an old friend that I had often used before, years ago, to help with sleep issues. And I decided it was a fairly benign "natural" chemical normally produced by my body. So I popped one pill under my tongue before bed. As per usual, I couldn't turn off my brain, so I got up and sat at the computer doing who knows what for an hour and a half, until I simply could no longer keep my eyes open. Climbed into bed and drifted off. FIVE HOURS LATER I awoke. Hmmm. So, the following night I tried again. This time I only got four hours of uninterrupted sleep, but stayed abed and actually drifted off for another hour or so. Not bad. Last night was about the same, and who knows what the night facing me now will bring. But it is a start. The fear, of course, being a "half empty glass" kind of guy, is that I'll soon build up a resistance and it will quit working. But not without a fight. My General Practitioner recommended, on hearing this story, that I take a daily walk in the sunshine, not for the vitamin D, but for the sun's effect on my brain, as is seen by suffers of Seasonal Affective Disorder (SAD). That starts tomorrow, and we shall see.
Not. Sigh. It is 3:30 AM. Went to sleep at about 11:00 PM and have been restless since about 1:00 AM. I'll try again in a while. I said this is really different because it was a private joke I had with a native Belizean fisherman I once spent a lot of time with as we fished for snapper for supper. If we'd been going to various good locations and coming up with nothing but nibbles by small fish, or stolen bait, we'd sometimes head to parts unknown by a reef-cut or somewhere equally promising on normal days. If, after another half hour of trying every trick in the book, we were still without supper, my friend would announce: "Now this is something really different!" —meaning that we were just wasting more time and should be back on the beach with beer in hand or some such. I always laughed. I called my friend "Short Gar" (another private joke) and miss those days.
The annual most-sane-people-hate-it Thanksgiving Day celebration was held at the home of my wife and her younger daughter. It was a happy occasion, bringing all of the closest of our family together.
I only became sad when I was finished with my small-portion meal, sitting alone on one of the sofas I used to own. I realized, then, why being in that house hurts. It is because I see my history there: the history of both my wife and me. "This $3,000 sofa was once mine," I thought. "As was the one over there. And so was the similarly priced Persian carpet, and the table and, and, and." It is not that I miss them; they're just things. But they are part of my history and that of my wife, and now they are gone, but still constant reminders of what once was and what we had and the life we lived together.
Still, that did make me a bit sad, so I was the first to make my excuses and leave; I wanted no anxiety attack to overwhelm me then. No way. So I came home to this rental-to a place that is not even mine, but is the only place I have. My new life. I know that I'll dream about those things tonight, so once again avoid sleep. The fear of sleep. There must be a word for that. If not, I'll create one.
William Styron's small book titled Darkness Visible: A Memoir of Madness is revealing to many and comforting to me, in a way that can only a life-long sufferer of depression may find comfort. Our experiences are markedly different, yet have a familial familiarity. Perhaps it is time for another bestseller to re-educate the general public on matters of melancholia. But if I find nothing more than an understanding eye, though he'll never see this, it is well enough for me. If misery loves company, as is so often said, then company I have found.
The total despair I've felt off and on over some forty-plus years has not been the same as that described by Styron, but has been unique to me, as it must be to every depressive.
So, thank you, William Styron, for writing this book. Would that all of us had a similarly powerful and personally truthful way with words.
• • •
My own experiences with depression started full force when I was a teen (and not until I reached the age of sixty, as it was in Styron’s case). He makes what seem to be perfunctory leaps into his past in search of causality, and is finding a culmination at that age. For me this make us cousins similarly afflicted, I suppose, but hardly kindred spirits. Much of what he writes rings true to me, though some of it is hollow. And it is likely that I resent his remarkable recovery, I most certainly resent the final passages in his book, understandable because they were written by a survivor but are nevertheless grating to this artist's soul, with the hint that salvation awaits, if only we tread the right path and "once again behold the stars."
Probably for the first time in my life, and certainly for the first time that I can recall and make an accurate assessment, I am now well into my first 24 hours of bipolar mania. Presaged by several days of obsessive overwork and erratic sleep, today has been a rage of words and thoughts, like the blast of a jet through my mind, yet it has left me in a mystifying stupor of confusion and indecision. I don't know whether I feel more like I'm going to explode or dissolve. This is not fun. And if it actually IS a manic bipolar swing, only a greater depth of depression waits on the other side. Words are a torrent in my head. My body aches from tension, yet I'm still driven toward sleep as an escape that may save or destroy. I've never been here before, and it is terrifying.
I've found out what happens after a 24-hour period of what must be bipolar mania, at least to me. It began this morning. I had no words. Or, at least, I felt no need to speak to anyone. There wasn't an ounce of rage left in me. I seemed contemplative, but to no identifiable end. As the day progressed, I tried to continue business as usual, but there came to grow an overwhelming sense of ennui. I am feeling desperately lonely, but at the same time I know that this must be suffered alone. This is my depression, and no words can pretend to comfort. Asking someone for comfort now would be to invite them to participate in the desolation I feel, and that would only make things worse.
I don't like this feeling even more than I didn't like the feeling of being out of control during yesterday's manic episode.
Thoughts of suicide again flutter around the fringes of my mind, but only as the wings of moths. Even death seems pointless. It all seems pointless.
If you have never felt, literally, the wind of the wing of madness, then you cannot possibly understand me or know my life.
“I have cultivated my hysteria with delight and terror. Now I suffer continually from vertigo, and today, 23rd of January, 1862, I have received a singular warning, I have felt the wind of the wing of madness pass over me.” — Charles Baudelaire
It seems that my next stop, finally, will be ECT. All the various doctors involved have been "getting their ducks in a row" for some time, and I'm awaiting word on the next step. Meanwhile, my anti-anxiety med dosage has been lowered again, and will be cut in half yet again on Monday.
My silence here for the past few days is the result of the depression following my manic episode. It is only now beginning to lift.
There remain, however, many personal issues regarding my situation which remain unsolved and, I admit, largely unexamined, as my conscious efforts to confront and resolve them are defeated by the chaotic eddies of my fears, low self-esteem, and almost total lack of self-confidence, which is new territory for me. So I work at the computer all day and well into the night in order to avoid myself and the reality of my isolation. When I am left with only myself as company, with no work to intervene, I fall into disconsolate loneliness and fear. I'm way too old and too smart for this, and my last real hope of being able to cope and formulate reasonable plans for the future now hang on the ECT outcome.
Night is the worst, as darkness suffocates the world outside my cell of self-imposed isolation and forces me further into my self.
Is it really possible for me to be happy? Will I then leave the “me” I've known for nearly sixty years behind? And what else must I leave?
“My present life is one of almost total isolation. Days will pass without my seeing another person. Some of the isolation is a matter of circumstance and the nature of the work I do. And some is a self-imposed confinement, I suppose. My self-esteem has taken a beating for several years, now, and more recently I've lost a great deal of the self-confidence that has always supported me. The result is that I'm not entirely sure what kind of person I'll be from day to day as various moods of anger, frustration, fear, and loneliness sweep over me. Because I am resistant to normal levels of the psychoactive medications that have helped me get this far, and because of the side effects of large doses, I've been headed toward a course of ECT, which is supposed to begin before Christmas. I'm supposed to find out when it will start in the next few days. Meanwhile, I suffer endless days dreading the endless nights to come, stewing in my homemade soup of self-analysis and philosophical musings, searching for answers to what seem to be unsolvable riddles, just trying to find a reason for it all.
“I get advice aplenty, of course. Meditation! Jesus! Exercise! Sunlight! And it is all hogwash. I'd say that there is not one person, either friend or family, who has the smallest inkling of what severe depression is like and what it is doing to me. My younger stepdaughter, now my wife's legal guardian, just can't conceive of my world, and I'm beginning to feel as though I'm coming to be seen as that unfortunate relative best left locked away in the basement.
“Thus the reason for my being of two minds about a simple thing like lunch with old friends. I've suffered this terrible loneliness many times before, but always had the strength of youth to persevere. But now, having been joined at the hip to one woman for a quarter-century, I no longer have the resiliency of youth, nor its illusions, nor time to err and begin again.
“So this has become a very self-centered, personal battle for me, and I am loathe to involve others, no matter their sincere desire to help, or even listen to my ranting. I have this one remaining hope: that ECT will break through the muck my brain has become, and let me see the possibility of a meaningful, even if not happy future.
“For the moment, at least, then, I must sadly decline your invitation. If the treatment proves helpful, I'll come begging for another chance: another invitation. And please know that I most sincerely thank you for extending this one, and for bringing back some few pleasant memories.”
• • •
Now begins the part of my life in which I use a new tool (new to me, anyway) to help me in my fight against depression: ECT. That is Electroconvulsive Therapy, which has been studied for decades and is probably the most-researched tool in the psychiatrist’s black bag of treatment options. It may be well-researched, but how and why it seems to work remains largely a mystery, and it is usually misunderstood, having received much off-putting coverage in media and movies in the days when the treatment was used without the patient’s permission, sometimes with devastating effect. As practiced now, the procedure is very carefully controlled and monitored. I had to fight to get the treatments. No guarantees are offered relative to its efficacy or the length or degree of relief it may afford, but anecdotes abound regarding how well it has helped other sufferers of seemingly intractable, drug-resistant depression. It took some months to arrange after I first suggested to my psychiatrist that I use it. They tested my heart function. They tested my blood. They tested my willingness and determination. And the cost of the procedures, which were not covered by my health insurance, tested my resolve. That particular calculation seemed to boil down to “happy but broke” or “too miserable to enjoy the little money I have left.” Here I use the term “happy” as meaning any condition of living in which depression is not the main operative force, and do not mean to imply that any kind of pleasure, satisfaction, or joy will likely replace the depression, should it be vanquished or even just greatly reduced by the treatments.
I start ECT on Friday, and then every Monday, Wednesday, and Friday thereafter for nine to twelve sessions. This is assuming that I respond positively to the treatments. Each treatment will cost me about $1200. My brother is going to take me to the hospital and bring me back here and baby-sit me for a while to make sure that I'm not so confused that I go out and get hit by a bus.
I've no idea what I'm going to be like from Friday on, then, but this is the only game in town, and unless something good happens, well....
So, I'll be poor a bit sooner than later, it seems. Happy, with luck, but broke. What a strange way to come to an end. All that work. All the tears.
Best not count on me for anything until my head is once again above water. I've been holding my breath for a long, long time, and it only remains to be seen whether I'm still alive when I break the surface. The thing is, I miss being married. More than anything else, I miss being able to share my life with someone who needs me to share her life with her. And for that, medicine has no cure. So win or lose, I fear that I've lost not only youth and resilience and self-esteem and self-confidence and money and a home and real options, but love, and that is the greatest loss of all.
Had my first ECT treatment this morning. The doc said everything went well from a "clinical view," and I've experienced no ill effects other than some lingering muscle aches. Since the effects of the treatments are supposed to be cumulative, I guess I'll just have to wait and see whether my general outlook improves; today's treatment only made me feel lonelier. But I guess that would be the case with most people who find themselves staring at the ceiling in a hospital for a few hours. The treatments are, due to some kind of perverse quantity discount, costing me $1,075 each. I can think of other things to spend that kind of money on that would be much more pleasurable, but I'm trying to look at it as an investment. Since my income is almost zero, in spite of working twelve to eighteen hours a day for months, I'm living on the remains after the "State-mandated" divorce. When that's gone, I'll be old enough to cash in my retirement account, though likely with some penalty. And when that's gone, it'll be welfare checks until Social Security kicks in. These prospects are, to me at least, dreadful, so I figure I'll just have to ramp up the number of cigarettes I smoke daily, since that seems to be the only State-sanctioned suicide format available. Chances are, though, that if things don't change for the better both in terms of my mental state and financial state, I'll just press my own eject button and let someone with a brighter future spend the money.
Mary came by the house for a while after I got back, so we had lunch together here and then watched a DVD movie. She said she fell on the walk over but was not hurt. Other than her continuing issues with verbal communication, she seems to be doing very well.
I read a good science fiction book last week, called Old Man's War—rather in the style of Robert Heinlein—and found myself agreeing with the protagonist in that I miss being married. I miss the feeling that I'm where I should be and with someone who feels the same. I've also decided not to go to Mary's house unless absolutely necessary. When there, I find myself surrounded by my own past: a past to which there is no future, and it is always discomforting.
I have completed a series of nine ECT sessions now, at a cost of almost $10,000. The ninth treatment was bilateral (the first eight having been unilateral) and, in contrast to the first eight, did have a short-lived but stunning and disquieting impact on my short-term memory. Suffice it to say that I was sufficiently distressed by the result that I decided I'd had enough, in spite of my psychiatrists' opinions that I should continue with at least one more. As it stands now, I remain open to the possibility of going back for "reinforcement" sessions, but am not eager to do so. I can say that the treatments did apparently have the effect for which I was searching; I'm now taking only a very low dosage of mirtazapine (30 milligrams before bed) to help me sleep through the night, along with a low dose (2 milligrams) of lorazepam to ease me into sleep, and nothing else. This is the first time in years that I've not been on a massive dose of one anti-depressant or other, and suffering one of some varied side effects. This, in turn, has allowed me an opportunity to regain control of my brain, under the careful and gentle care of my non-M.D. psychoanalyst, who is my touchstone for a process of personal reconstruction through Cognitive Behavioral Therapy.
Using this approach, I have recognized the illogical reasoning and defective thought processes that had been so strongly turning my mind against myself and speeding me down a path of self-destruction. Earlier today, someone asked me how I was doing, and I responded that I am being better. I may be doing better, and I may be feeling better, but it is the active process of making myself better that is key. If I am strong enough to continue this process of being better, I will eventually be well. That is my desire, but also my responsibility.
So, please wish me luck, for though I know I'll work as hard as I can at this process, a little luck will certainly help, and I'll gladly and thankfully take all the help I can get.
About the time Hawking and Penrose were cooking up the elemental fires of the Big Bang theory, I was finding out about Jean Paul Sartre and Existentialism. I was entirely too young to be caught up in the idea that existence precedes essence, but there I was, depressed as hell and ready, and there it was, ready to be taken as my guidepost for life and living. Generally, though all these years, it has served me well, though rarely thought about. I am, given the constraints of my perceived reality, what I have made of myself, and fully responsible, given what I had to work with, for what I have become. This allows me moments of elemental pride, just as it requires recognition of elemental responsibility.
But I wonder. Right now, it does seem to be more-or-less all about me, at least for me, within my philosophy. I am not and cannot be responsible for any other, though I may wish it were so, just as no one else can be responsible for me. So, philosophically at least, we are each and every one of us a philosophical singularity. My loneliness is more than being alone and isolated; it is integral to my very being, and it is painful only to the extent that I allow it to be. Unfortunately, I've been allowing it to feed my feelings of hurt in a very big way. So I remind myself that this pain and isolation and my feelings of loneliness are no more than mental constructs. Others do care for me, but they are not responsible for my pain or me and likewise, since I'm all I have, it IS all about me.
Such are the mental gymnastics born of idle time and long days and nights of loneliness. I'm working on it. But this is proving to be the hardest part of being human and being me.