Through the Valley--the First Two Years

THROUGH THE VALLEY--THE FIRST TWO YEARS (Aug., 2000)

By “the valley,” I am referring to the 23rd psalm’s “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 didn’t 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 didn’t

know exactly what was wrong, but reassured me that my symptoms did not fit the pattern

of Alzheimer’s. 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 didn’t find reassurance regarding the

decompensation hypothesis. And, alarmingly, I discovered that my symptoms could

represent the beginnings of frontotemporal dementia, which like Alzheimer’s 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 Alzheimer’s disease. Since

then I’ve had additional tests and second opinions. Frontotemporal dementia has been

ruled out; Alzheimer’s 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 Frankl’s _Man’s 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.” Frankl’s

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 Freud’s 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 Alzheimer’s meaningful was by adopting

an approach like Frankl’s. I too had my theory, akin to his but with some important

differences (see below). Alzheimer’s 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.” Alzheimer’s has brought the woods to

me.

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 couldn’t 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 she’d 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 Alzheimer’s 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

Beethoven’s 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 I’ve 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 didn’t 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 doesn’t seem gray, life doesn’t seem pointless, I

don’t usually feel down on myself. I am respected for my courage and I feel I deserve

this respect. I don’t 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 Wordsworth’s 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 sun’s tears would sing
against a white stone....

I never saw another butterfly...
Butterflies don’t live here, in the ghetto.”

I don’t see butterflies like that any more. Rather, it’s like in a vignette of Frankl’s, 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 didn’t 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, it’s 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 Midas’s 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

creature.

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 doesn’t 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 Jung’s ideas on Christianity with her lover. It was not a special occasion nor a

special discussion.

I recall Shakespeare’s celebration of memory: “When to the sessions of sweet silent

thought/ I summon up remembrance of things past.” Now there’s a vague, dull, yet

profound poignancy in remembering memory that had been.

Paraphrasing Larry Rose, a fellow Alzheimer’s patient, I am “trapped in the dull numb

present.” To know that tomorrow I’ll have little memory of today, that it’ll 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 he’ll 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

disappointed.

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 Alzheimer’s 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.”

I’ve 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

Alzheimer’s by then it is already too late may be obviated with some forethought. E.g.,

one can temporarily reduce medication to anticipate one’s 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

disabilities:

“You have to dare to dream, to imagine, to believe, to plan. Look--it isn’t easy
because along with the dream there must be the realistic appraisal. Is it only a fantasy?
Or can it be achieved? Yet if you don’t dare to dream, Jimmy, no one is going to do it for you.

“How do you dream if you can’t 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 your heart.
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 one’s own song, it is living

one’s own story--story in the sense of Hamlet’s 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 one’s 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 Laura’s 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 Alzheimer’s.

Parallels between Auschwitz and Alzheimer’s 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

slaughter.

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 isn’t 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 I’m a member of the Chosen People

(chosen of course to lead and benefit others), and then why not believe I’m a member of

the Herrenvolk or Master Race, like the Nazis did?

No, like Job, I’d like to see if I can maintain my integrity. I sometimes write of “God”

because I don’t 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 Dickinson’s observation: “That it will never come again/ Is what makes life so

sweet. Believing what we don’t 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 Spiegel’s “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 Dossey’s _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 Dossey’s 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 I’m 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 Alzheimer’s journey is an illusion, an elaborate

hysterical hypochondriacal fantasy. As if I’m 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.

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---Morris Friedell MorrisFF@aol.com

My homepage:http://members.aol.com/MorrisFF/index.html