I HAVE A NAME GIVEN BY THE SEA
(Feb.21, 2003, edited Nov. 9, 2008)
I'm 63 years old. Five years have passed since my memory was normal, since time was what it used to be. The past is distant and the future is clouded. I recite for myself this mourner's prayer1:
Each of us has a name
given by the source of life
and given by our parents
Each of us has a name
given by our stature and our smile
and given by what we wear
Each of us has a name
given by the mountains
and given by our walls
Each of us has a name
given by the stars
and given by our neighbors
Each of us has a name
given by our sins
and given by our longing
Each of us has a name
given by our enemies
and given by our love
Each of us has a name
given by our celebrations
and given by our work
Each of us has a name
given by the seasons
and given by our blindness
Each of us has a name
given by the sea
and given by
In 1998 I learned that I probably had a progressive incurable dementing disease, probably Alzheimer's. I wrote: "I am turning to religion. I don't completely trust religion--people who invest a lot in it are so often worse than those who practically ignore it--but what choice do I have? What else could possibly be powerful enough to help me in this dreadful situation? ... Rather than pathetically clutch after crumbs of my past life, why not see what religion has to offer?" The 23rd psalm appeals to me. "Yea, though I walk through the valley of the shadow of death, I will fear no evil. For Thou art with me." According to Liberal Judaism, cognitive impairment should be no barrier to experiencing that serenity. "What does the Lord require of thee but to do justice, love kindness and walk humbly with thy God."
My memories tend to be faint and elusive; my past life is like a novel I studied in college, the future feels simultaneously dark and blank. Life is in the now, but it's largely a flat now (except for music). I have become intimate with fatigue, vulnerability, finiteness and limitations, but has not that always been the human condition? Though my cup is slowly and inexorably emptying, I can look at it as still essentially half full and likely to remain that way for some time. Last February I met Andrea on the Internet and fell passionately in love with her. I moved to Houston. Now we are married. She is in the same leaky boat as I am. We talk less and do less than our former selves would have, but there is a kindness and warmth which is a new fulfillment.
Our hopes are symbolized by these simple vows: "Today I take you to be my partner in marriage. I promise to love, honor and cherish you through good times and bad, for richer or poorer, in sickness and in health, with a commitment that lasts for all our remaining days. May our home be forever filled with peace, happiness and love." One of the first films we watched, cuddled up together, was "Titanic." We don't have much guidance as to how to keep our hearts true while our brains deteriorate, but we have faith that we will find a way.
In November, 2001 when I wrote my previous memoir ("Onward...") I was depressed. I had gotten depressed the month before, after 20 months of being in reasonably good spirits, such as I had reported in "Through the Valley," (August, 2000). I recovered in January, 2002, but was depressed again in April and May. Since then I haven't been clinically depressed. I believe the main factor in my episodes of depression was letting my life become unbalanced through excessive leaning on projects which served, in part, as grand distractions from my authentic interests and concerns. Michael Yapko's Breaking the Patterns of Depression has been helpful.
On the whole, I'm neither happy nor unhappy. Except for the Alzheimer's my health is good and I'm not hurting for money. Apart from slowly working on projects such as the present essay, I don't have much activity. It's as if I'm laid up with a virus that saps my energy but isn't painful. I listen to music and watch TV. I visit my therapist and I talk on the phone with a friend in California. And it is much more pleasant to live with Andrea than it was to live alone.
Often my creative impulses lead me to think about distressing subjects--but I feel as if I'm writing a novel rather than considering my own past and future. And I can freely put the manuscript aside and listen, say, to Andrea's concerns or enjoy a situation comedy. I'm not afraid of death, not afraid that death will make me miss out on wonderful experiences--but I don't look forward to death either. I'm curious to know how my life will unfold as I face the challenges ahead.
"It is not up to you to complete the task, but neither are you permitted to refrain from it," declared a Jewish sage. This is the task of preserving/becoming one's true self, which includes participating in one's own way in the larger task of tikkun olam, of healing and transforming the world.
As I look at the little model railroad train on my window sill, I remember when I was a little boy. I was timid, afraid of big dogs, afraid to go high on a swing, but I wanted to be courageous when I grew up, and I wanted to go somewhere with my life--like my toy train was meant to go somewhere.
In my twenties I became a mathematical sociologist. I did imaginative technical studies that brought me tenure, but I dreamed of major contributions. My major project in my 30-year academic career (I retired in 1994) was a study of "the reality of human dignity." It did not result in a published book, but when I reread the manuscript I am proud of the work I did. I am proud that I could touch some students with my vision. I am proud that I genuinely participated in the task of tikkun olam.
And I created a course called "The Social Psychology of Affliction." One of its inspirations was Dorothy Soelle's radical Christian theology of compassion. Compassion means understanding the tendency to blame, ignore or patronize the victimized, and to refuse to worship a false God that abets this. It means working toward healing interventions on a personal and societal level, and when nothing else can be done, to be in solidarity with the afflicted person and share his burden. As Elie Wiesel put it: "You suffer, therefore I am."
After being diagnosed with Alzheimer's I fought to preserve my capacity to dream, to struggle and to care. In 1998 I wrote:
I hope to be able to contribute to existential philosophy from a unique
perspective. Perhaps, as my selfhood diminishes, I can add to the general human
understanding of matters such as "self" and "time" and "nothingness." With this
orientation I can perhaps make my slow dying a final intellectual and esthetic
When I was in my early teens in the 50s I avidly read science fiction by Robert Heinlein and Arthur C. Clarke. I fantasized being an "astrogator." We collide with an asteroid, there is not enough fuel to get back to earth. We turn the ship straight away from the sun, we voyage out beyond the orbit of Pluto. We know we will perish in the interstellar void, yet we hope to radio back to earth images of beauty never seen as well as valuable information.
Since my diagnosis I have done pioneering work on Alzheimer's rehabilitation. I have researched the literature on recovery from traumatic brain injury and traumatic loss in general and adapted it to my situation. I cofounded the Dementia Advocacy and Support Network, and have done what I can, through emails, presentations and publications to help others and to continue to advance the cause of human dignity.
In 2001 Christine Bryden and I presented "Dementia Diagnosis--Pointing the Bone" at the Australian Alzheimer Assn. Conference. We compared diagnosis with dementing disease to "bone-pointing" by sorcerers in Aboriginal culture. The terrorized victim sickens and dies. We proposed that the survivor of a dementia diagnosis consider living a vivid and dramatic contradiction to the toxic lie of hopelessness and helplessness. Preparing and presenting our talk was an example was an example of this--Christine declared: By making this presentation we are claiming our full participation in cultural life and making a stand for all people with cognitive limitations. Morris and I are in solidarity as Christian and Jew, as persons with Alzheimer's and fronto-temporal dementia, as Australian and American. We seek to work towards transforming our culture into one honoring human dignity--or humankind as created in the divine image.
Part of the difficulty of my situation is the uncertainty of my prognosis. What sort of future challenges should I expect, and when? Alzheimer's cannot be definitively diagnosed except by brain biopsy or autopsy, but PET scans are about 90% accurate. The PET scans I had in 1998 and 2002 indicated Alzheimer's disease. I believe that the absense of the typical qualitative symptoms of AD at this time is due to my rehabilitative efforts. As I wrote 3 years ago in "Potential for Rehabilitation in Alzheimer's Disease," "... a primary feature of [AD] is neuronal hypoactivity, resulting in progressively decreased processing capacity and lowered stress threshold. This suggests ... that the qualitative symptoms of moderate AD, disorientation, gross forgetfulness, and loss of abstraction and judgment, are susceptible to rehabilitative intervention.... Insofar as a person with AD can relearn activities using a greater number of easier steps, he can regain function. And there is evidence that substantial capacities for procedural and implicit learning are retained."
There is a small probability that I do not have a dementing disease at all, but benign aging combined with decompensation of a longstanding nonverbal learning disorder and/or atypical depression. There is also a small probability that I have a dementing disease which is not Alzheimer's. This might be bad news, since in that case medications for Alzheimer's which are currently under development might be ineffective for me. Another small probability is that I have Alzheimer's pathology but that my current high level of functioning is due to the effect of my rehabilitative efforts on comorbidities (a nonverbal learning disorder and/or depression) rather than on the main disease process. If so, I may quickly lapse into dementia in the not-too-distant future. On the other hand, there is a small probability that I can develop far more effective techniques than I yet have for warding off the dementia usually consequent on Alzheimer's pathology.
I believe it is highly probable that I have Alzheimer's disease but that my rehabilitative efforts are currently effective. Typically the course of AD is 8 years between diagnosis and death, but one may survive 20 years. The absence of marked progression of hypometabolism between the two PET scans suggests a longer course but is far from definitely predictive.
Hopefully I can continue for some time to avoid gross loss of function. I am prepared to further simplify my life and develop new compensatory strategies. My recent neuropsychological testing revealed no major deficits. Nevertheless I've experienced a profound loss. I used to percolate with ideas--now they come slowly and mental effort quickly tires me. Reading a popular novel takes as much concentration as reading a textbook used to. Watching a movie often makes me feel confused--as if I were arriving in the middle of it. In sum, for me it's become life in the slow lane.
And where will I be five years from now? I have been studying the experience of persons in the middle stages of dementing disease and their "excess disability" which is caused by their internalization of the stigmatization surrounding them and by misguided attempts to help them. I am convinced the typical course of Alzheimer's is not inevitable.
Like many people, I consider severe dementia a fate worse than death, not because it is painful but because of the degradation. I have therefore planned to monitor my current and expected quality of life and to commit suicide when that will have become a final act of self-affirmation. In my liberal Jewish tradition suicide is a respected option when life can no longer be lived with dignity.
Until that time, my principal concern is not death but life. How should I respond to my situation? To Live with Hope, To Die with Dignity: Spiritual Resistance in the Ghettos and Camps, by Joseph Rudavsky, inspires me. How can I, like my forebears, continue to dream, to struggle, and to care? Of course, I could try to play the ostrich and "live in the now," but that would not be me. I have read extensively in how people "choose life" in difficult situations, and a key point is to find a project which feels deeply right and can be the backbone of one's life.
What is my life-task now? I identify with Gordon Stuart, a young man dying of cancer, who pondered: "What purpose was my life, my illness, my death? I'm still working that one out. It certainly can't be--grace under fire or coming to some big understanding. It must be something more intimate." Yes, rehabilitation, advocacy, and existential explorations are valuable but not my true central concerns.
In the writings of Emily Coleman, a middle-aged woman dying of cancer, I found this quotation from Frederick Buechner: You may in the privacy of your heart take out the album of your own life and search it for the people and places you have loved and learned from, and for those moments in the past--many of them half forgotten--through which you glimpsed, however dimly and fleetingly, the sacredness of your own journey.
I have two children. Leesa, 36, is a gymnastics coach. She is pregnant with her second child. Julia, 34, works part-time and has four children. My daughters are very different from each other in appearance and personality, yet I feel they are each like me in important ways, and when I see them with their own children I feel a satisfying sense of continuity.
I don't see them often because they live on opposite coasts and I live in Texas. This symbolizes that they have their own lives. I like these lines from The Prophet: Your children are not your children./ They are the sons and daughters of life's longing for itself..../ You may give them your love but not your thoughts,/ For they have their own thoughts..../ [and] their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
Nevertheless I'd like them to pay more attention to my plight. Pre-dementia I expected to either die suddenly (and thus relatively painlessly) or have a "good death" (say from cancer). My loved ones gather round my bedside, there are tender reminiscences, hugs and tears. There are "I love you's," "Thank you's," and "I'm sorry ... It's alright's." There are poetry and music, words of wisdom and (metaphorical) visions of a life beyond the grave--along with morsels of wit and laughter to lighten it up. Living my dying "with dignity, with courage, with humor, with relatedness" (as Morrie Schwartz, dying of ALS, put it), I have previewed our memorial ceremony and found it satisfactory. I die in peace, knowing that as a parting gift I am leaving a legacy of faith and love.
Their lack of attention is not because they don't love me but because my situation doesn't seem real. It was different when I had a cancer scare and emergency abdominal surgery last year--I was gratified by their concern. But early Alzheimer's is a nebulous disease presaging a nebulous death. And if what I yearn for is a great going-away party the suicide option doesn't help. For if I'm still with it enough to enjoy the party, then I'm not yet ready to ethically choose to die.
Buechner suggests I'm supposed to want a mystical intimate fulfillment that is delicate and spiritual, but what I really want is more in the direction of rich pathos and warm sentiment (like in "La Traviata"). Hmmm. I recall reading about a terminally ill teenager whose greatest fear was that he would die a virgin. I can identify. To have lived is to have experienced. I want to go out with a bang not a whimper.
Judaism talks about serving God with the evil impulse as well as the good. If our desires are self-pitying and self-indulgent, we should not suppress them but respectfully search within them for the core of genuine value. I'm not the only person in the world who is deprived of sympathy because his situation is an awkward one. Realizing this, I see a task before me.
Another root of this task is my regret at being underresponsive to my children's pain long ago. It was not because I didn't care but because I didn't understand. Their mother's abuse was hidden and my ignorance was normal, just as their current behavior toward me is normal. Nevertheless I could have perhaps done better if I had been less passive and self-distrustful. If I had more faith that I had something to give I might have given more. A Jewish saying declares that in one pocket you should carry a slip of paper declaring "The world was created for my sake." In the other pocket a slip of paper should declare "I am dust and ashes." In these my final years I still have an opportunity to achieve this balance.
When I was a little boy and I was picked on by bullies and I went to my parents about it, Dad said "punch 'em in the nose" and Mother said "Buy them sodas." When confronted with a problem that wasn't easy for them to handle, they got rid of it so fast they were neither practical nor ethical. When I grew up I learned about their childhoods, and about how Dad probably thought he'd be nothing without his smarts and his fists, about how Mother probably thought she'd be nothing without her family's money. They were trying to teach me what they "knew." They couldn't be there for me because they weren't there for themselves. In this world, which had recently perpetrated the Holocaust, what did I (or they) have to complain about?
When Mother was 13 her younger brother died. When I was born she named me after him. She's never told me what he was like and in her father's autobiography there is not a word about his personality though the autopsy of his heart is reported. (Grandpa was a prominent doctor and Junior died of rheumatic fever.)
Junior died on April 9, 1929. It was the day before Mom's 14th birthday. Thereafter her father never stopped working and her mother never stopped mourning--this she reported in a way that hinted at her own frozen grief.
In 1997 Mom was diagnosed with a "degenerative amnestic state." Since then she has gone slowly but steadily downhill. Now her speech is largely incoherent and, with congestive heart failure as well, she probably has only months to live. Two years ago I wrote a brief memoir of her life and our relationship. It was titled "I Started Losing my Mother before She was Born and Now She's Four Years into Alzheimer's."
That was when I for the first time tried to imagine what it was like for Mom when Junior died, and tried to think of questions whose answers I would never know: What was he like? How long did she fear he was dying? What was their last conversation? The last time she saw him? What did she miss about him? What did she not miss about him? What was she thinking when she named me after him?
Writing the memoir, I came to feel that my former indifference to the exact date of Junior's death symbolized something deep and disquieting about the life I had lived. I had cared about Mother's pain as part of the explanation of her bad parenting, but I had not been concerned with it as the pain of a human being with whom I'd been involved, to whom "Love thy neighbor as thyself" applied. My mother's world had been too small to love me, and mine too had become smaller than it should have been, albeit in a different way.
When I was in my early thirties I studied the Holocaust in depth, in order to draw my own conclusions about the ignobility of human nature. Then I wrote a poem:
I am a survivor.
I crawl out of the bloodstained pit.
Some babies stopped the bullets meant for me.
I walk around dazed.
I see a clump of flowers,
indifferent, beautiful, blind as God.
I uproot them and place them on my cousins' bodies.
I am about to creep back into the pit to join my cousins in death
when the bulldozers come.
Then I realize they would not have wanted that,
and I limp toward the forest to hide.
I have eaten my fill and made love,
I have traveled and written,
I have taken some part in that work
which the Talmud says we are not expected to complete
but are not permitted to refrain from.
Last night when I looked into your eyes I saw
theirs over your shoulder.
My darlings, I am living. It is good.
And some day,
in a South African jail
or prostrate on a bloody pavement
I will come home.
These turbid memories of genocide and private sorrow tell me something about who I am and what I am supposed to do. At times they darken my spirit, yet I have faith that they are not the whole story. Once a week, on the Sabbath, we celebrate the goodness of the world as it is, rather than strive to improve it. We remember that "each of us has a name given by the Source of life." I like the wisdom of the Bengali poet Rabindranath Tagore:
"Rest belongs to the work as the eyelids to the eyes."
"God expects answers for the flowers he sends us, not for the sun and the earth."
1In M. Falk, The Book of Blessings, NY: HarperCollins, 1996
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