I remember as a boy, an uncle of mine was diagnosed with Alzheimers. I wasn’t very close to him and I never I really gave it all that much thought. But that was the first time [as I recall] that the idea of identity first crossed over into my consciousness. I wondered what it really meant to think of yourself as “I” if something can happen inside your brain – something that is completely beyond your control – to take all that away?
And I am still at a loss in grappling with it today. I can speak of dasein – a fabricated self rooted in historical and cultural and experiential parameters – but that doesn’t make the implications of an affliction like alzheimers go away.
On the contrary, it tends to nudge me closer to accepting the arguments of those who embrace determinism as the most reasonable explanation for why we “choose” to do what we do. In other words, even if not afflicted with degenerative conditions like this “in the brain”.
And alzheimers is a degenerative disease. Which is to say, the torture is more along the lines of drip…drip…drip. Then one day you piss your pants because you forgot where the bathroom is in your own home. And then a few days later you forget how to tie your shoes.
Here the drama is amped up considerably because Alice is afflicted at such a relatively young age. After all, it’s one thing to “lose your mind” when you are in retirement, and another thing altogether when you are still more or less in the prime of your life. And thus having much more to lose. Alice is the Lillian Young Professor of Linguistics at Columbia.
Indeed, in the book she was a professor at Harvard. Still, it might be said that she is one of the lucky ones. Lucky in the sense that she has a lot of folks who love her, who care for her…and plenty of money to access all of the options.
IMDb
[b]Alice is shown being a compulsive “Words With Friends” player. Alec Baldwin, who portrays her husband, was notoriously booted off a plane before takeoff in 2011 because he refused to stop playing the game and power down his phone.
The directors of the film, Wash Westmoreland and Richard Glatzer were unable to attend the Oscars to see Julianne Moore win, due to the fact that Glatzer was suffering from ALS and his condition had deteriorated significantly.[/b]
at wiki: en.wikipedia.org/wiki/Still_Alice
trailer: youtu.be/ZrXrZ5iiR0o
STILL ALICE [2014]
Directed by: Richard Glatzer, Wash Westmoreland
Alice: Most children speak and understand their mother tongue… before the age of 4 without lessons, homework or much in the way of feedback. How they accomplish this remarkable feat…well this is a question that’s interested scientists at least since Charles Darwin kept a diary of the alien language of his infant son. He observed man has an instinctive tendency to speak as we see in the babble of young children. Much has been learned since then but today, I’d like to focus on some recent studies from my lab on the acquisition of past tense irregular verb forms in children between the ages of 18 months and 2 1/2 years. Now, you may say that this falls into the great academic tradition of knowing more and more about less and less until we know everything about nothing. But I hope to convince you that by observing these baby steps into the…into, uh…I…
And there it is. That first “gap”.
[b]Doctor [to Alice]: So I’d like to do an MRI just to rule some things out.
…
Doctor: What worries me are the memory tests that I sent you for. You have sporadic memory impairement totally out of proportion to your age. And there is evidence of decline in your level of mental function. So I think we should do a PET scan. It’s similar to an MRI but it can pick up things at the molecular level…
Alice: I know what a PET scan is. What in particular would you be looking for?
Doctor: I want to see if the results are consistent with Alzheimer’s disease. That would be rare for someone as young as yourself but you do fit the criteria.
…
Alice [at 4 in the morning]: John, get up sweetheart, wakeup. I have to talk. I have um…I’ve got something wrong with me.
John: What are you talking about?
Alice: I’ve been seeing a neurologist.
John: You’ve been seeing a neurologist…why?
Alice: He thinks that maybe I have early onset Alzheimer’s disease.
John: Honey, that doesn’t make any sense at all.
Alice: I didn’t want to tell you because they don’t know anything for sure but I’ve been doing all these tests and things…
John: Ali, that is completely insane.
Alice: I got lost while I was running on campus a while ago. I can’t, I can’t remember appointments, words.
John: Honey we all have memory lapses. That’s a sign of getting older. The other day I couldn’t remember the word…um… “glucose”.
Alice: It’s not like that. It’s like something drops out of me.
John: But there is no diagnosis yet?
Alice: No.
John: Well then I think that this is ridiculous it’s complete bullshit. You don’t have Alzheimers.
Alice [angrily]: God damn it. Why won’t you take me seriously?! No I know what I’m feeling. I know it’s feeling…It feels like my brain is fucking dying. And everything I’ve worked for in my entire life is going. It’s all going!!
…
John: Well shouldn’t any diagnosis be accompanied a genetic test?
Doctor: Actually I was gonna suggest that. In a case like this with the onset being so early we would like to check for presynalin mutations. And that would be an indicator of familial Alzheimer’s disease which is a rarer form. We need to make an appointment for you to see a genetic counselor.
Alice: So this concerns my children?!
Doctor: Yes.
Alice: I assume that if I have the gene the odds of my passing it along are 50/50?
Doctor: I’m afraid so.
Alice: And if they are carriers, what…what are the odds of them developing the disease?
Doctor: I’m afraid it’s 100 percent.
…
Alice: But the thing, the thing is, that, John, the thing is that the type of Alzheimer’s I have is very rare. It’s familial. It’s passed on genetically.
Anna: My god.
John: We believe that she got it from her father and, of course, we’re very worried that about the three of you. Now, there is a test you can take but it’s completely up to you whether you want to find out or not.
Alice: I’m sorry. I’m so sorry.[/b]
So would you take it?
[b]Anna [on the phone]: Mom, I got the results. I’m positive.
Alice: Oh, god Anna. I’m sorry. I’m so sorry.
Anna: Tom turned out negative and Lydia didn’t wanna know. But I’m positive.
…
Alice: I wish I had cancer.
John: Don’t say that.
Alice: Yeah, I do. I mean it. I mean I wouldn’t feel so ashamed. When people have cancer they wear pink ribbons for you and go on long walks and there’s money raised and you don’t have to feel like some kind of social…I can’t remember the word.
…
Alice [on the computer]: Hi, Alice. I am you and I have something very important to say to you. WHAT STREET DO YOU LIVE ON? WHAT MONTH IS YOUR BIRTHDAY? WHAT IS THE NAME OF YOUR OLDEST CHILD? So I guess you’ve reached that point…the point where you can no longer answer any of the questions. So this is the next logical step. I’m sure of it! In your bedroom there’s a dresser, with a blue lamp. Open the top drawer. In the back of the drawer there’s a bottle with pills in it. It says “take all pills with water”. Now there are a lot of pills in that bottle. It’s very important that you swallow them all, okay? And then lie down and go to sleep. And don’t tell anyone what your doing. WHEN YOU CAN NO LONGER ANSWER THESE QUESTIONS GO TO A FOLDER ON YOUR COMPUTER LABELLED “BUTTERFLY”.[/b]
I actually have my own rendition of this: The names of my family. The names of the Beatles. The names of the original Rolling Stones.
[b]Alice: I used to be someone who knew a lot. No one asks for my opinion or advice anymore. I miss that. I used to be curious and independent and confident. I miss being sure of things. There’s no peace in being unsure of everything all the time. I miss doing everything easily. I miss being a part of what’s happening. I miss feeling wanted. I miss my life and my family.
…
Lydia: What’s it like? Like, what does it actually feel like?
Alice: Well, it’s not always the same. I have, uh, good days and I have bad days. On my good days, I can, you know, almost pass for a normal person. But on my bad days, I feel like I can’t find myself. I’ve always been so defined by my intellect, my language, my articulation and now sometimes I can see the words hanging in front of me and I can’t reach them and I don’t know who I am and I don’t know what I’m going to lose next.
Lydia: That sounds horrible.
Alice [after a pause]: Thanks for asking.
…
John: If I could just jump in here, we’re both concerned about the rate of deterioration. Is that normal?
Doctor: Every case is different. With Familial Early Onset, things can go fast. And actually with people who have a high level of education things can go faster.
…
Alice [at Alzheimers conference]: Good morning. It’s an honor to be here. The poet Elizabeth Bishoponce wrote: ‘the Art of Losing isn’t hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.’ I’m not a poet, I am a person living with Early Onset Alzheimer’s, and as that person I find myself learning the art of losing every day. Losing my bearings, losing objects, losing sleep, but mostly losing memories…
[she knocks the pages from the podium]
Alice: I think I’ll try to forget that just happened.
[crowd laughs]
Alice: All my life I’ve accumulated memories - they’ve become, in a way, my most precious possessions. The night I met my husband, the first time I held my textbook in my hands. Having children, making friends, traveling the world. Everything I accumulated in life, everything I’ve worked so hard for - now all that is being ripped away. As you can imagine, or as you know, this is hell. But it gets worse. Who can take us seriously when we are so far from who we once were? Our strange behavior and fumbled sentences change other’s perception of us and our perception of ourselves. We become ridiculous, incapable, comic. But this is not who we are, this is our disease. And like any disease it has a cause, it has a progression, and it could have a cure. My greatest wish is that my children, our children - the next generation - do not have to face what I am facing. But for the time being, I’m still alive. I know I’m alive. I have people I love dearly. I have things I want to do with my life. I rail against myself for not being able to remember things - but I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment. And not beat myself up too much… and not beat myself up too much for mastering the art of losing. One thing I will try to hold onto though is the memory of speaking here today. It will go, I know it will. It may be gone by tomorrow. But it means so much to be talking here, today, like my old ambitious self who was so fascinated by communication. Thank you for this opportunity. It means the world to me. Thank you.
…
Alice [after John finds her phone in the cupboard]: I was looking for this last night.
John [whispering to Anna]: It was a month ago.
…
John: Ali, you see that building over there? You know what that is?
Alice: I don’t think I know that.
John: That’s Columbia where you used to teach.
Alice: Someone told me I was a good teacher.
John: Yes…you were.
Alice: I was really smart.
John: You were the smartest person I’ve ever met.[/b]