ONWARD THROUGH THE VALLEY
Now, in November 2001, it's been over three years since I was diagnosed with Alzheimer's disease. Until October it had seemed that I was on a plateau. Preliminary results from neuropsychological testing at UCLA in July are that my scores were average to superior. But now I think a decline in ability to sustain mental energy was masked by slow deep writing projects and by living very simply. In hindsight, I have been gradually moving farther from real-time participation in life. When I visited the Bay Area in early October, and then New Zealand later that month (for the Alzheimer's Disease International conference), I became aware that I'd grown more "out of it." Riding a bicycle through unfamiliar urban streets took all my mental energy. My participation in conversations felt sadly minimal. It is as if fewer thoughts ooze out, or they ooze more slowly (unless it's a matter of well-trodden mental ground). Or that I have less energy to think them or put them together--and it is harder for me to take initiative. I'm vulnerable to feeling a dull or gray fadedness or blankness. I often feel sort of detached. My memories have faded. So, after hoping that my rehabilitation efforts could outrun the disease (it's still barely possible), I have an increased consciousness that my days and my thoughts are numbered.
My life since I wrote "Through the Valley" in August, 2000 has been mainly a matter of writing projects. Nearly all my time is spent alone, in a small house in a small town in Montana. There are occasional visits to family, occasional visits to conferences (I don't know if I'll do the latter any more). I see a psychotherapist twice/week, check with him on my judgment in practical matters, and, mainly, use him as a friendly ear in the quest to make sense of my life.
A principal interest in the several months after writing "Through the Valley" was to work on theories of rehabilitation and apply them to myself. I wrote about this in "Dementia Survival--A New Vision." More recently, I have written a memoir of my mother, and letters of thoughts and feelings to my adult children.
During the summer of 1998 I believed I had been declining at such a rate that I could expect to be severely impaired by now. I had no idea that I could maintain my "activities of daily living" and stabilize my remembering and problem-solving abilities for an extended period of time. I joined via the Internet with others in my situation to organize the Dementia Advocacy and Support Network http://www.dasninternational.org/ and make presentations at international conferences. We are proud to affirm the dignity of persons with dementia, and by implication, of all persons with disabilities, of all the weak and afflicted. I came to hope that I could fight off the disease indefinitely. I was inspired by a book about a boy without a right hemisphere who is almost normal (Battro, _Half a Brain is Enough_).
However, taking a hard look, I see that I nevertheless have been declining. Visual processing, conversation, or taking initiative is more fatiguing. I feel yet more deeply like an interstellar voyager, or like one of the dead in _Our Town_.
I probably won't be dying soon, but I'm not "living" either. Hardly anything ever happens in my life anymore, and that's not likely to change. I can perhaps further patch myself up with rehab--but how long will I be able to hold out with any quality of life? The future is a dark cloud.
Actually, I don't want to say I'm not living now, because if life were about youth and strength the Nazis would have won, wouldn't they? The aged trees with few leaves are an integral part of the forest. The triangle is as much a part of the orchestra as the violin, isn't it, isn't it? I continue to sympathize with the case for the meaningfulness of suffering Viktor Frankl made in _Man's Search for Meaning_. Isn't my situation is not death but change?
Here's a quote that I resonate to, from a person dying of cancer: "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...."
What purpose was _my_ life? I was an intellectual, and worked with ideas to contribute to the healing and transformation of the world. More intimately, I remember that I loved and that I sought for love.
I particularly liked this poem by Raymond Carver, "Late Fragment":
And did you get what
you wanted from this life, even so?
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
Anyway, I had the dream.
Poems of Rabindranath Tagore expressed my feelings of parental love:
When I bring you colored toys, my child, I understand why there is such a play of colours on clouds, on water, and why flowers are painted in tints--when I give colored toys to you , my child....
This song of mine will wind its music around you, my child, like the fond arms of love.....
My song will sit in the pupils of your eyes, and will carry your sight
into the heart of things.
And when my voice is silent in death, my song will speak in your living heart.
Love and work are two important meanings of life, and at least I can say I cared about them. Camus in _The Plague_ meditated on their counterpoint: "a loveless world is a dead world, and always there comes an hour when one is weary of prisons, of one's work, and of devotion to duty, and all one craves for is a loved faced, the warmth and wonder of a loving heart."
Here's another poem about love:
Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
O bends with the remover to remove:
Oh, no! it is an ever-fixed mark,
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.
Love is not love if it quits when things are difficult. Despite the darkness of my future, I must not quit life rather than have the "the courage to suffer," if that is what is called for. And, contemplating these poems, I am aware that I yet have a song to sing.
When I got the bad-news MRI on June 24, 1998 one of the first things I did was begin to plan how I could deliver myself (commit suicide) before I, say, started eating glass Christmas-tree ornaments. (The frontal atrophy was what was most obvious.) In doing this planning I was taking charge of my life--it helped me recover from depression. I looked at the ethics of the decision, the problem of timing, and the means. I talked with a counselor who was experienced in attending self-deliverances. Since then I've not dwelt on the issue extensively. I generally felt far from the threshold, that I was declining only slowly, and that I had other things to do with my life.
Now, however, having become aware of a significant and probably irreversible decline in my quality of life, it is time for me to make careful and detailed (although inevitably imperfect) plans. I want to know when it is time to die, and die then. I believe that if I "have my bags packed" and am available for the call of death, I will live my remaining life (say, three to five years) with more quality and serenity--my limited mental energy will be less depleted by anxious thoughts of degradation and helplessness.
Meanwhile, life goes on, albeit a diminished life. I believe in the Jewish ethic of kiddush hahayyim, the sanctification of life. Amidst the horrors of the ghettos and camps my people did not surrender easily but lived with hope and died with dignity, witnessing to our faith. I yet have life to live and work to do. I can apply more intensively my concepts of rehabilitation and psychotherapy, I can explore what buddhist ideas about emptiness and impermanence have to offer. And I remain a participant in family, communities and the world. There are grandchildren to hug, there are others out there facing difficult situations I can yet say a word to.
Feb. 13, 2002. A month after I wrote the above, I became aware of how much unconscious fear I had been carrying around since 1998--I decided to get to the bottom of my fears. This relieved my depression. And recently I feel I've made a breakthrough in rehabilitation through a novel combination of music and meditation. I feel I've gotten my personality back, and I hope that I'm on to something that can help persons with a wide variety of brain disorders. I'm writing about it at Holistic Interventions