THROUGH THE VALLEY--THE FIRST TWO YEARS (Aug., 2000)
By the valley, I am referring to the 23rd psalms valley of the shadow of death. The
onset of the deepening shade was insidious and uneven. I think the first faint symptom
occurred twelve years ago, when I found it difficult to handwrite legibly unless I paid
close attention. Then, around seven years ago I found myself having to note carefully my
students contributions and review them between classes. Six years ago I retired from
being a sociology professor and began to live a more contemplative life. Four years ago I
found myself afraid of getting lost, though that never actually happened. Three years ago
I found myself strangely inarticulate in social gatherings, but I had never been good at
small talk anyway, and felt, like I did about the fear of getting lost, that it must be some
not-too-important psychological issue.
In the fall of 1997 I became troubled by a growing inattention to most details in reading
and conversation, and when I once made myself pay careful attention to the details of
what someone was saying, they didnt register. That winter I listened to my uncle tell an
important family story, and while the central points came through clearly, the interesting
substory of how he got the story was a blur. I looked around and saw that I was the only
one having trouble.
Then I went to a neurologist--he told me I probably had nothing to worry about, but
suggested I go to a neuropsychologist for testing. There, in February 1998, around the
time of my 58th birthday, I discovered that something was drastically wrong. Most
alarming was my poor performance on the test involving arranging cartoon panels to tell
a story. I could no longer, as it were, open two windows on my mental computer screen
at the same time. And if I visualized I could not think. The neuropsychologist didnt
know exactly what was wrong, but reassured me that my symptoms did not fit the pattern
of Alzheimers. Rather, my symptoms were reminiscent of the spaciness of the
nonverbal learning disorder that had afflicted me as a child. Probably normal aging had
decompensated them, and I need not fear a malignant progression.
I started researching neurology on the Internet. Not much was known about the effect of
aging on nonverbal learning disorders, so I didnt find reassurance regarding the
decompensation hypothesis. And, alarmingly, I discovered that my symptoms could
represent the beginnings of frontotemporal dementia, which like Alzheimers is terminal,
and, while rarer, is underdiagnosed and typically afflicts persons in my age-range,
making it a serious possibility. My neuropsychologist did not seem knowledgeable about
this disease, so I went back to my neurologist and suggested that I get an MRI. He
agreed, and on June 24, 1998 showed me the film and pointed out the atrophy.
The next stop was a frontotemporal dementia specialist at UCLA who ordered a PET
scan. This indicated, to her surprise, that the diagnosis was Alzheimers disease. Since
then Ive had additional tests and second opinions. Frontotemporal dementia has been
ruled out; Alzheimers continues to be highly probable though not certain. My basic
mental capacity seems to have continued to slowly decline, but I have developed quite an
ability to compensate, and, for example, regained my ability to perform at a superior
level on the picture-arranging test by substituting for visualizing a quasi-musical
sensitivity to themes. I have not lost my ability to write creatively and intelligently, but
writing something like this takes me perhaps four times as long as it would have three
years ago. My thoughts ooze rather than percolate and I am vulnerable to fatigue.
I used to teach courses on how people met the challenges of difficult situations. This was
an engaging subject matter and could illustrate my theories of the positive potentials in
human nature. I began my course on Human Dignity with Viktor Frankls _Mans Search
for Meaning_. In this book he described how he survived Auschwitz, not only through
strength and luck, but by tapping his spiritual resources. He was fond of quoting
Nietzsche, He who has a why to live can bear with almost any how. Frankls
particular meaningful life-project was rewriting his book on his theory of the human need
for meaning and the value found in honoring that need. He could take Auschwitz as a
laboratory for testing that theory, as against Freuds more pessimistic view. He could
find respite from the horrors by imagining himself standing on the platform of a well-lit,
warm and pleasant lecture room. In front of me sat an attentive audience on comfortable
upholstered seats. I was giving a lecture on the psychology of the concentration camp!
One way I decided to make my journey through Alzheimers meaningful was by adopting
an approach like Frankls. I too had my theory, akin to his but with some important
differences (see below). Alzheimers could be my laboratory, my experiment in Truth
(as Gandhi put it) . Hopefully I too could make a contribution, not only to the
psychology of my particular problem, but more generally to the understanding of the
human condition. As the disease progresses (at least up to a certain point) I can take it as
a challenge to cleave to and explore the essential. Thoreau went to the woods because he
wanted to front only the essential facts of life. Alzheimers has brought the woods to
After getting the results of the MRI I was at first rather frantic, struggling with anger and
depression, communicating emotionally to my children, and reconnecting temporarily
with my exgirlfriend. I wrote Incipient Dementia, where I vowed to decline with
dignity and see if I couldnt commit suicide before (but not much before) it was too late.
In November I spent a pleasant week in the English countryside with an old friend and
thought I was beginning a calmer life, but soon after returning I fell in love with a fellow
patient I met on the Internet. That intense relationship lasted three months.
I had been impressed by the way rehabilitation had helped Claudia Osborn, a head injury
victim with symptoms vaguely like mine but a lot worse. (And shed been able to write
_Over My Head_, a marvelous book, about it.) The more I studied the matter, the more it
seemed to me that the symptoms of mild to moderate Alzheimers disease might be
susceptible to rehabilitation as well, and I began to write a professional paper detailing
my arguments and, in the process, maintaining my intellectual strengths. Indeed, I have
some hope that, with my inside knowledge of the damaged brain, I may also be able to
contribute to traumatic brain injury rehab. In July, 2000 I presented my work at the
World Alzheimer Congress in Washington, D.C. As a teenager I had admired
Beethovens heroism in composing with all the more creativity in defiance of
encroaching deafness. Now I could emulate him.
After some further relationship ups and down Ive come to lead a quiet life on a small
farm in Montana nestled in a valley beneath the sublime Absaroka mountains. My friend
Laura, also diagnosed with AD, lives here as well. As a romance it didnt last, but our
common interest in projects such as the Dementia Advocacy and Support Network has
been an enduring one.
I continue to drive and to manage my finances. I am not obviously impaired, yet my life
has changed profoundly. Conversation, extensive reading, sports, hobbies have just
about fallen by the wayside--anything involving sustained complex real-time interaction
with the environment. I have little physical energy and less mental energy. I spend much
time half dozing, half musing on my couch or recliner. Even watching TV would take
too much concentration to be fun. In some ways it is as if I were depressed. Yet I am
not, on the whole, depressed. The world doesnt seem gray, life doesnt seem pointless, I
dont usually feel down on myself. I am respected for my courage and I feel I deserve
this respect. I dont feel boredom or loneliness like I used to--those feelings have
become faint and dull.
One thing in 1998 that had softened the trauma was finding myself more able to savor
visual experiences than I previously had been. Though only one window on my inner
computer would open at a time, that view could be, as it were, 3-dimensional in its quiet
richness. I was a bit like Wordsworths child who reveled in his hour/ Of splendor in
the grass, of glory in the flower. Before the MRI I remember hoping that I was
depressed rather than having an organic brain disorder. Then I would delight in, say, the
sunlight sparkling on the ocean waves (I lived in southern California then) and know that
I was not depressed, thus sense that I was doomed.
Now that responsiveness has faded concomitantly with a further decline in vitality and
mental energy. The flowers still look beautiful, but somehow as if painted. This
morning while taking my daily walk I was looking at a bright yellow flower by the
roadside and pondering this. I thought painted by God as part of His landscape. It
seems that as my thoughts have become more torpid, a kind of spiritual consciousness
perhaps has quietly emerged.
For comparisons to my experience, I look to poetry of the Holocaust:
The last, the very last,
So richly, brightly, dazzlingly yellow.
Perhaps if the suns tears would sing
against a white stone....
I never saw another butterfly...
Butterflies dont live here, in the ghetto.
I dont see butterflies like that any more. Rather, its like in a vignette of Frankls, about
an inmate who knew she was close to death: Pointing through the window of the hut,
she said, This tree here is the only friend I have in my loneliness. Through that window
she could see just one branch of a chestnut tree, and on the branch were two blossoms. I
often talk to this tree, she said to me. I was startled and didnt quite know how to take
her words. Was she delirious? Did she have occasional hallucinations? Anxiously I
asked her if the tree replied. Yes. What did it say to her? She answered, It said to me,
I am here--I am here--I am life, eternal life.
Still, its a sad life. When memory goes, so goes desire. My past is like a novel I studied
long ago. My rich field of memories has become more like a single cherished photo
album. I read Bauby, _The Diving Bell and the Butterfly_. A brainstem stroke had left
him almost totally paralyzed, in a diving bell as it were, but his thought could still flit
through space and time: My mind takes off like a butterfly. There is so much to do. You
can ... set out for Tierra del Fuego or for King Midass court. You can visit the woman
you love, slide down beside her and stroke her still-sleeping face.... My mind used to be
like that too. Now it torpidly noses the grottoes of memory like a sluggish sea-bottom
Yet, with an effort I can remember what it was like to have a wealth of memory, to be
like a high-flying eagle scanning, then zooming in. To live was to take for granted the
ability to rapidly access the past and imagine the future, to stride proudly on the trail of
time. Oliver Sacks writes of one of his cases, He seemed ... to lack that eager and
anxious tension of anticipation, of intention, that normally drives us through life.--me
too. Versus the way it was between 1948 when I was 8 and fixed an electric clock all by
myself, and the fall of 1997 when Judee and I walked in the starlight and I shared some
hopeful thoughts. But the greatest poignancy is of little things that are no more. (Of
course, my damaged brain doesnt feel poignancy as it did, but, as it were, senses the
ghost of poignancy.) I think of Claudia Osborn mourning the self that died in her
accident, recalling her former self making a cheese and spinach omelet while she
discussed Jungs ideas on Christianity with her lover. It was not a special occasion nor a
I recall Shakespeares celebration of memory: When to the sessions of sweet silent
thought/ I summon up remembrance of things past. Now theres a vague, dull, yet
profound poignancy in remembering memory that had been.
Paraphrasing Larry Rose, a fellow Alzheimers patient, I am trapped in the dull numb
present. To know that tomorrow Ill have little memory of today, that itll be like the
course one studied before the summer break, makes living today like Sisyphus pushing
his rock up the hill (albeit with rest-breaks), knowing that it will roll back down and
tomorrow hell have to start all over. Is filling a gap in the literature of death and dying
or being another coral in the reef of human knowledge really enough to keep me going?
Actually I have a more intimate motivation. Frankl understood it when he said in a
sermon to his fellow inmates, Someone looks down on each of us in difficult hours--a
friend, a wife, somebody alive or dead, or a God--and he would not expect us to
disappoint him. He would hope to find us suffering proudly--not miserably--knowing how
to die. I remember my children when they were small and trusted me, and I imagine
something in them is looking down on me. It would not, despite everything, expect to be
So I need to keep on living, and trying to live so that my memory will be for a blessing. I
need to keep on working on the sacred task of healing and transforming the world, which
the Talmud says we are not required to complete but not permitted to refrain from. I
need to keep on working on the sacred task of becoming my true self, in defiance of the
expectation that Alzheimers means the loss of self. Before Rebbe Zusia died, he said:
When I shall face the celestial tribunal, I shall not be asked why I was not Abraham,
Jacob or Moses. I shall be asked why I was not Zusia.
Ive been inspired by the accounts of sufferers with other terminal illnesses who have met
the challenge of inner healing, spiritual growth, and becoming more their true selves.
And in my tradition it is recognized that there may come a time when you can no longer
live as God wants you to, and then you may take leave. The catch-22 that with
Alzheimers by then it is already too late may be obviated with some forethought. E.g.,
one can temporarily reduce medication to anticipate ones quality of life down the road.
It is difficult to conceive what it means for a person with progressive dementia to become
his true self. Long ago I read this advice from a disabled man to youngsters with
You have to dare to dream, to imagine, to believe, to plan. Look--it
because along with the dream there must be the realistic appraisal. Is it only a fantasy?
Or can it be achieved? Yet if you dont dare to dream, Jimmy, no one is going to do it for you.
How do you dream if you cant walk or see, and they tell you
that you never will
be able to do these things? What about _limitations_?
Well, I put it sometimes in these words: Keep a dream growing in
Feed it and water it and keep it green and young and alive, fresh in your mind and your
heart, and _there_ you will find no limitations.
In this spirit I will temporarily I will brush aside the limitations. To be oneself, to be a
mensch, is more than being a virtuous person, it is singing ones own song, it is living
ones own story--story in the sense of Hamlets dying words: If thou didst ever hold me
in thy heart,/ Absent thee from felicity awhile,/ And in this harsh world draw thy breath
in pain,/ To tell my story.
A place to search for the seeds of the true continuation of ones story is in long-term
memory. Eve Coleman, dying from breast cancer, wrote a helpful essay. Fighting
depression, she realized that she had lost the thread of her story. She was grateful for
these words of Frederick Buechner:
You may in the privacy of the 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.
In 1998, around when I learned I could no longer arrange the pictures, I remember telling
a friend about the death of my exwife several months before, and I was stunned to
become aware that I could only with great difficulty remember when that was. It had
become shrouded in the past--the time-line of my memories had become illegible. My
biography seemed no longer mine, but like the legacy of a beloved uncle.
Several months ago I observed with dismay that the warmth and vitality of my long-term
memories had further faded, and that now my past life was like a vaguely remembered
novel that I recall having been quite excited about and having taken a course on back
when I was in college. But the text had illustrations which I remember.
My grandson Alistair was born prematurely in December, 1999. I hardly remember
meeting him. But I do remember well an expressive photo of him and his two adoring
parents. And I remember the red light of the oxygen monitor glowing through his toe
(like ET, the nurse said), and the minute stitches being sewn in his navel (to hold a tube).
My memory needs the sublime or the lurid to activate it. I recently saw a rattlesnake
right near the house and Lauras sister-in-law shot it--this perked up my memory too.
Sometimes, however, memories of the distant past have a surprising presence. It as if the
containers separating my memories have eroded, letting them leak into simultaneity. My
life is spread out in the landscape of the past like an old overgrown garden in a hot still
autumn day. Nothing happens any more. But the ghost of springtime may visit me. I
remember my outpouring of heartfelt sympathy for the sorrows of the woman who
became my wife; I remember my joy in having her to make love with. She appreciated
my caring, at the time--enough so she wrote me about it 25 years later. It did not occur
to either of us that the sympathy was one-sided.
I now ask how could I have lived more as my true self, not in a spirit of perfectionism or
unforgivingness, but to better live my true story in my remaining life. I sought for love
but I found only experience. I suppose I could have conducted my quest more wisely.
Why was I so involved so deeply and so long with various Ms. Wrongs? I imagine that a
dream could have slowly ripened in my heart, and it would have become clear that it was
unshared. The dream was so beautiful and so important!
Was there some inner message I was afraid to listen to? I do not believe so. I should
have cultivated the dream, message or not. The dream did radiate a sense of value,
meaning. But I was expecting it to tell me what to do.
When in Washington for the Alzheimer Congress I visited the Holocaust Museum. I was
surprised by the rich flow of memories for events, reflections and feeling the experience
generated, as if they were stored in an alternative system untouched by Alzheimers.
Parallels between Auschwitz and Alzheimers have occurred to me. People being robbed
of their dignity and being beaten down into oblivion. Stunned and confused, going like
sheep to the slaughter. The extraordinary prevalence of denial among victims,
perpetrators and bystanders alike. But a few who resisted, shining in the darkness. In the
eighties, meeting Tom Blatt had been one of my most memorable experiences. He had
escaped from Sobibor death camp--one of the most heroic escapes in history. He stressed
to me that he was not a hero, he had simply accepted the reality of his grim situation and
responded to it.
At the Holocaust Museum I bought a copy of _The White Rose_, about how a group of
young Germans in Munich came to awareness, then came to resist, to write and distribute
the anti-Hitler Leaflets of the White Rose, and were caught and executed. While I had
previously known about them, I had not paid particular attention. I had, however, been
interested in two questions: Could a person make such sacrifices out of love rather than
some kind of fanaticism? I believed: yes. Would I, in their situation, have acted like
them? Probably not. I probably would have not felt a special calling. But I hope I would
have been open to such a message, I hope I would have done _something_.
My chief thoughts about the White Rose had been philosophical and ethical. Now I was
struck by the blurb on the cover of the book: Some lives are so intense and exquisite that
only poetry can tell about them. These are the lives of artists and geniuses and mystics
and martyrs. Such were the lives of Hans and Sophie Scholl... This is a sad and beautiful
book; timely and timeless. Yes, I essentially agree, although the quote is from the Wall
Street Journal. The Scholls had read Pascal and Lao Tzu, they had listened to plaintive
Russian folksongs, they had seen the suffering in the face of an old Jewish scholar. I
agree, although I am aware of the dark power of economic interests in history and
although I know how the Nazis listened to Bach and Mozart and still went out to
I do not feel at all moved to reject my former critical stance, rather I now am attending to
something in addition. Truth is beauty, beauty truth? Not in any obvious sense, but the
deepest beauty speaks to a personal truth.
In a way, it seems strange that when I think of the White Rose I do not think that I should
have, say, poured blood on a nuclear submarine and gone to prison, but I think of my
early dreams of love and friendship. But on a deep level it does not seem strange.
I now want to return to talking about my experiment in Truth, about the beliefs I am
using my journey to test. With Frankl, I believe that maintaining ideals in an extreme
situation (as long as they are not harsh but forgiving) can aid in survival with dignity.
This is evidence that the ideals are not mere images of the socially desirable or
ego-ideals but may be rooted in Nature or God. There is an important question,
however, that Frankl evades, and that I would like my remaining life to address: granted
that beliefs are important, which are better: beliefs that are comfortable or beliefs that are
true? For Frankl it sometimes seems to be: any port in a storm. He seems to
excessively trust that what feels meaningful _is_ meaningful, declaring, for example, that
he would not die for his defense mechanisms. This is a dangerous philosophy--Nazis
died for their defense mechanisms. Frankl asks fellow victims to consider: how do they
know their suffering isnt analogous to that of a laboratory animal being punctured in
experiments toward the development of a vaccine. But Harold Kushner, who tragically
lost his son, reminds us in _When Bad Things Happen to Good People_ that not everyone
who wields a knife is a surgeon.
Pragmatic believing, believing what works, does not work to make someone an ethical
person, I think. For example, I might believe in Heaven because that seems harmless
and comforting, the next step might be to believe Im a member of the Chosen People
(chosen of course to lead and benefit others), and then why not believe Im a member of
the Herrenvolk or Master Race, like the Nazis did?
No, like Job, Id like to see if I can maintain my integrity. I sometimes write of God
because I dont want to throw the poetic baby out with the bathwater, but for me integrity
demands this word for a supremely powerful and loving Being be thought of in quotes.
I want to stay far from the suffering that promiscuous believing has probably caused
humankind. And I have another reason for trying not to fool myself: I want to be fully
alive until I die. I concur when Thoreau writes, No face which we can give to a matter
will stead us so well at last as the truth.... I did not wish to take a cabin passage, but
rather go before the mast and on the deck of the world, for there I could best see the
moonlight amid the mountains. I do not wish to go below now. I sympathize with
Emily Dickinsons observation: That it will never come again/ Is what makes life so
sweet. Believing what we dont believe/ Does not exhilarate.
But look what lonely lives Dickinson and Thoreau led--and they made mistakes!
Nevertheless, I imagine that my true life would have had more of their integrity.
I believe in not pretending without evidence that pleasant possibilities are in fact
probable. Correlatively, I believe in boldly confronting painful realities. David Spiegel
writes in _Living Beyond Limits_: I have become convinced through twenty years of
clinical work and research that the best way to face the threat of serious illness is to look
it right in the eye, to face the worst rather than simply to hope for the best. The success
of Spiegels supportive-expressive groups of advanced cancer patients argues well that
the temporary discomfort of honesty is a small price to pay for the improvement in
quality of life it leads to.
The opposing viewpoint is summed up by T. S. Eliot: Go, go, go, said the bird:
human kind/ Cannot bear very much reality. I think it is illustrated in this paragraph
from Larry Dosseys _Reinventing Medicine_: But we must be cautious. Excessive
empathy can cripple a physician. I once knew a pediatric oncologist who identified so
deeply with his young cancer patients that he began to attend their funerals and mourn
with their parents. He became so depressed he had to withdraw from his medical
practice and seek professional help. This attitude perhaps explains why there seems to
exist no physician committed to staying the course with a patient diagnosed with
progressive dementia and helping him or her make meaningful decisions, including
end-of-life decisions, as long as possible. And why there also is very little psychotherapy
available for us. It would be too depressing.
Underneath Dosseys surface New Age radicalism I sense an ancient stale tradition of
fear-based limits. I believe, however, that Timothy Quill in _A Midwife Through the Dying
Process_ presents a real alternative, declaring: Partnership and nonabandonment
are the core obligations of humane medical care for the dying.
We need physicians who believe that love can cast out fear (and depression).
I wish in my final journey to leave a legacy that will not only brighten the path of
dementia sufferers, but might do something to humanize the medical profession or even
move people to prevent future holocausts.
Finally, what else do I need to tell you to give a picture of my life?
It can easily seem as if nothing has changed in this season of my walk through the valley.
I have difficulty keeping my weight under control, much as before; I like much the same
music, find much the same things funny; I might glance at a popular novel and find it
hard to read, but think Im tired or uninterested--both of which may be true. I identify
with accounts by people in their eighties who had expected that then they would _feel
old_ all the time, but only become highly aware they are not as they were when they
attempt to do something now difficult.
I sometimes feel as if my whole Alzheimers journey is an illusion, an elaborate
hysterical hypochondriacal fantasy. As if Im having a neurotic dream which would be of
interest to an analyst. I go through life as a sleepwalker. It is like being depressed, it is
like being imprisoned in a garden, it is being intimate with loss and death, it is like being
able to talk sometimes with God. I hope that as the disease progresses the dream will
nevertheless grow to be more interesting and creative, like the paintings De Kooning
made though afflicted. The idea that it might be possible through novel ingenious
techniques to reaccess a powerful latent program whereby the brain of young children
and animals organizes itself through play intrigues me.
An Eastern poet centuries ago may have gone on a journey like mine. I like what he wrote:
In my childhood, how I ran and laughed and played,
And in my youth. But now
my last days pass in dream and meditation.
My teeth fall out, my hair is turning white,
my last youth ebbs away.
The days go by,
and my once gaily decorated house, built of the earth,
returns slowly to the earth.
But the garden of flowers at my house
still spreads its scent--
I will pick the flowers, and weave of them a garland
for my Friend.
---Morris Friedell MorrisFF@aol.com