Morris Friedell (edited Sept., 2003)
11/27/97. I worry a little that I'm getting alz., or I'm depressed or withdrawn.
12/8/97. Mother's at the Mayo Clinic.
12/13/97. Mother probably has Alzheimer's. I'm going to see [Dr.] Willis in January and find out what's what about my having Asperger's [Bill Gates' syndrome] and a visual memory deficit. At least I am exploring my own memory and my feelings about it, after avoiding that all these years.
1/8/98. No unpleasant surprises in the neurological exam!
1/26/98. I feel good Cheryl [a neuropsychologist] was reassuring about Alzheimer's, and also that it isn't hypochondria. I was alarmed when I could name so few animals in a minute [16 of them].
1/27. I suspect I'm not the only aging ASD [Autistic Spectrum Disorder] person to be challenged by decompensation.
1/28. Suppose there's been a general deterioration and I notice it [in places] where I was weak as a child because those systems have less redundancy. I don't notice it in thinking and judgment because there's more excess capacity and I live less in the world of real time. I don't have the catastrophic reactions characteristic of Alzheimer's because I've all my life had to deal with confusion. [Sept., 2003: This analysis was prescient.]
2/3. My 58th birthday. I feel alarmed by the way I sometimes feel I'm going in slow motion through fog. I wonder if I'm just being morbid. Possibly, but I don't think so.
2/6. Shortly after doing poorly on the name-the-animals test I became aware of the decrement in my reading. Sunday 2/1 the weakness of my sense of time-line for events of the last two years stunned me. [I had been telling a friend about Corky's, my exwife's, death and burial nine months previously. It seemed as if I was trying to remember a year in the distant past.]
2/11. If the apparent rate of progression continues I'll be seriously disabled in a couple of years.
2/17. It's as if I've gone blind, but am more alive to the depth and richness of the world of sound. It's as if I can have only one window open on my screen at a time--the others have to be icons. But that window can be 3D.
2/23. It's like I've lost a hidden sense like sight or hearing which everyone takes for granted, thus nobody is aware of. Now it's as if I've become blind and will never be able to delight in the face of my beloved.... And there's the dark cloud over the future.
2/26. "Good Morning, Midnight". [Emily Dickinson]
3/1. Well, it could be [that] aging no longer [enables] my frontal lobes to compensate for a conduction problem...
3/7. Even if it's "just" aging, that's sad--buddha's 3 signs... [These are sickness, old age, and death.]
3/17. On the one hand, it seems to be "just" aging. On the other hand, it happened so fast....
3/22. In a little over a month I'll put a stone on Corky's grave. Confronting cognitive decline has been heavy for me.... I feel a loss of vibrancy and agility.... I feel sort of as if I've aged 20 years overnight. My entire conscious past feels long ago and in another country.
I'm less able to track conversations, even less able to chat. I feel damaged.
[But] in the quietness an image can be deeper, richer.
3/27. Cheryl wants me to have a Rohrschach--she sounds pretty sure I don't have anything debilitating.
4/8. It pisses me off a little that I still haven't heard from Cheryl.
5/11. My driving has deteriorated. I feel I'm in a monastery what with my quiet serious sad evenness of mood and sensitivity to music and natural beauty, but silence except for informative use of words.
5/20. I sent Cheryll an e-mail asking for reassurance I don't have Pick's disease.
5/23. In hindsight, I'm aware of a marked change that happened about 6 months ago--my evenness of mood, my loss of interest in OA [Overeaters Anonymous], my sense of insulation from depression, a certain detachment from sexual craving, my lack of interest in varying [my] routines, my OKness being alone.
5/29. It seems to be ridiculous to think that I could be developing dementia if I can [analyze myself the way I do]. But it's not.
Boogie boarding interested me several months ago, but now it would feel too "noisy." It would be work.
The "Mrs. Dalloway" aphasia--I can only with considerable patience and difficulty talk about a movie I saw the night before, that I had enjoyed and found interesting... That's like a major hearing loss in its interference with social intercourse.
Maybe I've got "medical students' disease"--adding up vague minor symptoms into a frightening complex and amplifying those that fit.
I feel my IQ's dropping like Dad's bloodpressure did at the end--at first down into the normal range--that seemed nothing to worry about--but it kept going down. (I miswrote "put" for "but"... I make more mistakes like that.)
5/30. Still no word from Cheryl.
I feel my brain's rotting away.
I feel abandoned by Cheryll. I think of Willis being pretty sure I didn't have Alzheimer's orally, then hedging his bets in the written report.... I should get a brain scan.
5/31. My feeling about this whole situation seems strangely matter-of-fact--"I'm going to have to get a brain scan, and then I'm probably going to have to contact the Hemlock Society."
But listening to the final movement of Beethoven's 5th... I was actually more present. (I could enjoy the Beethoven a celebration of life without worrying about its incongruity with my predicament or my spirituality.)
6/1. Now, feeling the stunning force of fate, the 9th speaks to me as a whole. My new weakness in seeing the first movement as a gestalt helps me see the whole symphony as a gestalt.
6/3. I feel like I'm an island, and the edges of it are crumbling.
I feel this is unreal--if it were real I couldn't be so calm about it (though, objectively, my calmness is part of the damning evidence).
I did OK working on the election all yesterday. I wasn't uncomfortably bored, like I would have been.... My difficulty in studying the election materials, just like my current difficulty typing, is indeed probably a sign of something serious....
Thinking of the phenomenology of sex --when sexual with J, I felt it was more generic but no less authentic.... I was fully present, but the way one would be biting into an apple after a long hike. I was present ... the way animals are present in their sensual world. Along with the celebration of nuance, the uptightness in our relationship feel away when we were holding hands in the theater. I was the happy teenager I never was (but it wasn't important I never was.) It was timeless.
I feel I am the same flame, but a smaller one. I foresee the flame getting smaller and smaller, but just as hot and yellow--then going out and leaving smoke and a glowing wick.
6/4. I put catsup on broccoli rather than nutmeg and coriander.
Death taps you on the shoulder and says it's getting dark. You have to stop playing and come home.
J pooh-poohed the idea that I was dying--without listening to my argument. It must be my morbid fantasy.
6/6. [My daughter] Leesa's engaged!
6/9. I'll have a brain scan in 2 weeks.
6/11. J and I in the movie holding hands. Long ago we made love and it was wonderful.
6/13. I was moved to see Kim in the wheelchair at [her mother's] wedding.
6/15. I don't miss people the way I did.
6/16. I want to die.
6/18. I feel as if I've just got to get over this depression/hysteria/hypochondria and resume life as before.
What difference does it make what the diagnosis is? My life has been destroyed.
6/19. "The future is a thing of the past."
6/20. I think I might be getting a cold--my throat's a little sore.
A thinks I need focus, B worries I'm a hypochondriac, J thinks I'm avoiding dealing with my issues, Cheryll thinks I'm overreacting to normal aging, [my internist] thinks I'm a hypochondriac, C and D don't notice changes, Dr. Willis suggested therapy for anxiety, E suggests "caregiver's dementia."
Somewhere out there there is a woman who would resonate to my spiritual, psychological, political concerns. She might have a web page....
[6/24. Dr. Willis broke the ice by showing me how the MRI picked up the polyp in my nose. Then he got down to business.]
6/25. I never envisaged bilateral [frontal] atrophy... I guess part of me "bargained" that my study of phenomenology, dementia, stigma, the social psychology of affliction, meant that I'd die of a heart attack.
6/26. Suicide feels like the only issue I need to think through and make decisions about.
I joined the Hemlock Society.
It's the Sabbath. I lit candles, drank wine, ate bread. I read "Each Man has a Name." "Each man has a name given by the sea and given by his death." Ruth [my best friend], Rose [her daughter-in-law] and Taylor [her grandson] walked by the ocean.... Ruth cooked a tasty dinner, then I played pingpong with Taylor.
6/28. I felt miserable at 10:00, really for the first time. I guess it's finally hitting me.
I've lived to see Julia [my other daughter] and Lexie [grandchild] light the Sabbath candles. I'll probably live to see Leesa and Anthony get married. I won't have died a virgin....
7/1. I've lost an inner child. I can look forward to further losses and an abbreviated life.... There is the genetic burden.
7/3. Driving [along the coast] yesterday, listening to a Beethoven sonata and feeling the presence of the ocean, I felt a moment of a certain joy in being fully alive.
My principal task is to leave the kids as good a legacy as I can....
Dear Leesa, Here's a poem I like:
"Gather the stars if you wish it so.
Gather the songs and keep them.
Gather the faces of women.
Gather for keeping years and years.
Loosen your hands, let go and say good-bye.
Let the stars and songs go.
Let the faces and years go.
Loosen your hands and say good-bye."
7/7. I'm conceiving myself in a "bardo" state of transition. [See _The Tibetan Book of Living and Dying_.]
7/8 Julia wants a copy of the MRI.
7/10 [Frankl (_Man's Search for Meaning_) in Auschwitz]: "The hopelessness of our struggle did not detract from its dignity and its meaning... 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."
"Yea, though I walk through the valley of the shadow of death, I will fear no evil..."
7/14 It was good to talk with Leesa and feel a mutual acceptance of being at different places re my condition.
Who am I now?
7/18. I imagine myself taking the final pills. I know I'll feel a certain fear and bitterness. But I can think "this is my equivalent of chemotherapy."
I'll ride my bicycle and work out at the gym.
7/19. I'm glad Julia suggests I live in Manhattan [she lives across the river from it].
7/20. Ironically, facing this nightmare may be a special opportunity to share my psychospiritual ideas--compare Frankl...
7/25. [Dr] Tiffany Tom [at UCLA] said it's not unlikely I have FD [Pick's]. I have confidence in her. The next step is a PET scan. [J went with me to the appointment. Dr. Tom remarked to us: the patient is supposed to be the one in denial. I liked that.]
7/26. I'm glad the vancenase seems to work [for my hayfever].
[Ruth and I] went on the artwalk--our tastes are harmonious.
After a terminal diagnosis it ought not to be hard to get 60 nembutal.
7/31. Still waiting for the insurance preauthorization for the PET scan.
8/2. Part of me would still like to think it's hysteria. I'm nervous about going to the Alz. [support] group tomorrow.
8/3. Now I am no longer a master of ideas. Now my cortical tone is weaker. I can no longer aggressively attack a problem.
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.
8/6. The PET scan will be Tues. I felt bad last night about the children having a genetic cloud over their head.
8/11. The scan was postponed for a week.
8/19. [There was a message from Dr. Tom on my answering machine] If it's not FD, what is it? I feel like Lazarus, brought back from the dead... She sounded like she was warning me that it could be serious, but that there was hope.....