Sunday, June 27, 2010

New Glasses

Paul Williams in his new glasses, 6/27/10.

Alexander and I picked Paul up from Aviara and brought him home for a few hours today. He played solitaire for a while which seemed to amount to placing the cards in their suits. I changed the batteries in his hearing aids and used nail polish to write his initials on both hearing aids and his new glasses.

I'm concerned about his physical health. He's become considerably weaker and his balance isn't good. He teetered and swayed nearly falling several times before we reached the door to the apartment. I said to him, "If you walk a bit faster it'll easier to keep your balance". But he doesn't seem capable of walking at a normal speed these days.

This week I have it on my list to call his doctor and see if I can get him to prescribe Paul some physical therapy, which will amount to an order to the nursing home staff to walk him around the nursing home once or twice a day and maybe get him on the stationary bike.

Patients that are in the nursing home via Medi Care (usually staying no longer than 2 months) and are rehabilitating, have a room with a therapist putting them through some physical paces. Paul, like many long term patients without "long term health insurance", is there via Medi Cal (or Medicaid).

Medicaid's Skilled Nursing Facilities are what you can expect if you outlive your spouse and your relatives can no longer take care of you. It makes one think twice about those long term health insurance policies. They cover the cost of being in a privately run nursing home. Believe me the difference in the care, from what I've seen, is staggering. One home near us has ponies in the back yard for petting. A lovely walking garden. A pool. Daily exercise classes. The same staff members see you daily and know your particulars. Dogs are in rooms and hallways for petting. Meals for family members are complimentary and pretty good. And they make sure you and your clothes are clean. And this was a place specifically for dementia care.

At any rate, I asked Paul if he'd be up for the physical therapy and he said he thought it would be a good thing for him.

Friday, June 25, 2010

Flowers For Algernon

Paul's new glasses came in today. I'll take a picture this weekend and put it up. I was too tired and hungry after work to go over to the nursing home and put them on him, plus I'm going to need to put his name or his initials on the arms so they lose any potential "resale" value.

Do you ever wonder why it is that some aspect of your life turned out to be like a significant book you read as an adolescent? That would be Flowers For Algernon (Daniel Keyes) in my case.

In short, the story is told from the perspective of a man who had been born mentally disabled and undergoes an experimental surgery which increases his intelligence. Through his journal entries you follow along with his increased abilities and eventually his slow deterioration back into his disability.

When I was in the eighth grade we had to read the short story, it was in our text book and I was stunned that something so good could be in a school book. (Apparently it won the Hugo Award for best science fiction story in 1960) I bought the full length novel and dove in. Originally published in 1966 it became a joint Nebula Award winner for best novel. But I wouldn't have known or cared about that stuff then.

It was the 70s and I had arrived at the age where the first child of the family adventures out on their own into new and unknown radio territories. I must admit, though I loved music, I was very naive and unhip about what was going on in the world of pop. But I found a new station with the whirl of a dial that I dug deeply, and it became the soundtrack to Flowers For Algernon.

Here's a list of some of the songs I fell in love with: Eighteen With A Bullet, Me and Mrs. Jones, Using Me ('til You Use Me Up), Ben (especially poignant since it was about a rat and Algernon was a mouse), Shaft, What's Goin' On, Backstabbers....

The other station I listened to occasionally and when I wasn't reading the book had a few good songs but some dumb ones too. I liked The Needle And The Damage Done even though it was a scary song about drugs and I hated a song about a guy named Guitarzan. There was also a lady that sang about how terrible it was going to be to turn 17 (Janis Ian), dang it was depressing.

So I stuck to my new found radio station. I didn't realize at the time that it was for young black urbanites. For me these new songs were the sound track to this grand novel I'd discovered.

The parallel: When Paul had his bike accident way back in 1995 I was with him through all of the various forms of rehab. Even then I thought occasionally of the book parallel. Paul's doctors said his recovery from such a devastating brain injury was miraculous.

I watched Paul go from his early days in rehab, answering simple questions about the date and the president to his later rehab days having intellectual conversations with the cognitive therapist, her saying to me "There's no reason for him to be here".

Then in the past 6 years the slow, unstoppable descent into dementia. Flowers For Algernon the book had been my white mouse, doing a dry run before the real thing.

I don't see it all as a complete loss. We had eight years together after his injury where he lived a normal life as a writer, lover and father. Or as a simple tragedy. Even the character Charly knew he had done something very important for humanity, even in his final days of blissful naivete.

Paul enjoys looking at his books now and sometimes reads passages from them. Last year I asked him if he missed writing, he gave it careful thought and answered flatly, "no". And I could see he was alright with that.

He wrote more than 30 books. His words and perspective live on through them.

Monday, June 21, 2010

When I Learn To Drink My Coffee Black.

A neighbor of ours, Brian, takes Paul out for coffee and a cookie once a week. They almost always go to a little cafe and sit outside watching children play by the fountain. They read from a book, sometimes one of Paul's, or sit quietly watching the hour pass.

Brian told me how he offered Paul more coffee last week and Paul said to him, "yes! this is for the memory". Some things are beginning to make me think that Paul is aware enough to know he has a problem, which surprises me because he has no distress about his situation. Not upset about the nursing home he lives in, (Paul: "What's this place called" me: "Aviara Health Care Center" Paul: "Oh, okay."), not asking to come home, not wondering about his health or his mind.

Back in 2001, a month or two after our son Alexander was born Paul had the last of his bad "anxiety attacks". Several had happened in the few years before, most of them occurring during the year we lived apart, and that sent him into therapy, which then made it possible for us to reunite.

That night in 2001 Paul was out of bed at 2am wandering around the apartment, finally ending up in a fetal position on the living room floor. I woke easily, as we mothers do when we have nursing infants, and talked to Paul. He said he thought he was losing his mind. I assured him it was an anxiety attack and he could take some Xanax if he needed it. I think he eventually took a bath which calmed him down enough to go back to sleep. (The one time I did psilocybin it was with Paul and Donna in 1992, he felt terribly anxious and took a bath, she and I sat on the twin beds and laughed like crazy at our situation, it was all very funny you see)

Since the brain injury in 1995 Paul had his on days and off, but for the most part he was able to go about doing all things he done before: write books, give lectures, gripe about my terrible checkbook keeping, drive (though not very well), go for long walks and so forth. On his off days he would say his head felt "fuzzy" and tried using caffeine to get some clarity. I thought of the fuzzy days as a left over from the brain injury, but now I think it was possibly the early days of the dementia.

But what do I have to complain about? Back in 1995 the accident could have ended it all right there, and as my doc friend Karl once said "he had a near vegetable experience". But he didn't we had eight good years together after the brain injury and before the dementia came in. I'll take my blessings where I can get 'em.

(the title of this piece is borrowed from a song by anti folk hero, Lach)

Sunday, June 20, 2010

Fathers Day

Paul Fathers Day 6/20/10 at Aviara Health Care.
We took Paul out for burritos but he wasn't feeling well so we took him back to the nursing home right after lunch. He got a new deck of playing cards from us with names and accomplishments of scientists on each card. Here he is playing with them and feeling a little better.

Saturday, June 19, 2010

The Future Has This Tendency

I just finished reading Wm. Gibson's Neuromancer for the first time, at 2:30 in the morning. I'm in a book club and we'd voted that one in for the month. And it's a book I'd wanted to read for quite a long time. I didn't get very far with the last few book selections we've had, but this one I read joyously, and quickly with a whole week to spare. I can't help but wonder if Bill Gates got the name Microsoft from this book (which is the name of a software crystal some character slid into his head to dial into some place in the matrix/aka/internet.) I'm gonna do some hunting around. Fascinating stuff.

I love how science fiction has been a visionary forum for new technology. One of my old time favorite authors Arthur C. Clarke's book Childhood's End (1953) refers to a Facsimile machine which sends the written word instantly. Nowadays a Fax machine seems like an archaelogical artifact, but in the early 50s it was a vision of the future.

The future has this tendency it seems, of coming and going pretty quickly.

I just discovered the music of The Bird and The Bee through my friend Ellen and I've had their song Again and Again and Again on my brain station for the last few days. It running it's melody over and over and over in my mind.

I saw two movies today, to make up for my lack of movie going. I saw Toy Story 3 with my son Alexander and his school chum. Then, tonight, with Paula, Get Him To The Greek. We laughed our heads off and conferred on guys afterwards. I could use more of this laughing drug in my life.

I bought Paul two new pairs of glasses yesterday. They should be ready for pick up in a week. I've finally gotten his new prescription and a new frame together in the same room. And so I bought an extra pair because they get lost and broken it seems at the nursing home.

Alexander and I were visiting friends in Scotts Valley/Santa Cruz last week and second day we were there Paul's nursing home called to tell me his glasses were broken. *Why do these things seem to happen when I'm away?* At any rate, I asked them to tape 'em up best they could and let him wear them like that. It seemed to work.

Buying Glasses: Then there is the challenge of finding glasses that look like they belong to Paul Williams. Which is that wonderful sort of Issac Asimov, Peter Sellers, Woody Allen, 1970s Navy issue, mix. It used to be, at least in New York, in the 80s, you could find a pair of black horn rimmed glasses for 20 or 30 bucks. In the 90s I could find a few but it was hard 5 years ago. I did find some yesterday, grey to match his hair, the frames were only 80 bucks, not bad. Sure beats the damned high falootin' price of RayBans. And he looks cute in them for a guy that lives in a nursing home.

xo, clb

PS and to the blogger that wrote about my music and your crush and something I said in an interview about guys with glasses. I wasn't being flippant or facetious, they are my favorites.

and now I most certainly must go to sleep....

Tuesday, June 1, 2010

Hello Old Friend

Tonight a man in our apartment building passed away after four months of fighting colon cancer. He was a real fighter, not having had a bit of food for a at least four weeks. He told a friend this afternoon he was finally ready to go. And so he did.

I watched solemnly as they took his body away and his mother and daughters looked on from his upstairs apartment. I turned to the guy next to me, we all live here and have varying degrees of friendship with the man that passed, "I don't know if you're religious but this is a good time to say a prayer." He nodded, "yeah, I am. "

I think we are all religious, in that way I meant when I asked my neighbor. We all have a place we go to when our rational mind shrugs and says 'uncle'.

As they were loading him into the mortuary van I realized that he'd been Buddhist. I don't know why I thought that. Somehow I knew it was so and it made me feel okay for him and his family. I know he loved rock and roll, and weed, and dying women's hair and hi tech speakers for his music that he sometimes used to play too loud (but that was before he moved back from Hawaii). And he liked Paul.

I met Danny the year I moved back in with Paul, after our year apart. He had taken the apartment 2 doors away from ours and there were saucy women that would come and go from his place, flouncing there shiny long hair as they sashayed up the steel and cement stairs. He told me they were strippers, some of them, and then he dyed my hair a natural honey color while I was 6 months pregnant. "Girl, you don't want to have unnatural hair when you have a baby, let's take care of this now". So I let him.

There's a lovely picture of me and Paul and 3 day old Alexander sitting beside a large oak dresser my hair the color of it's grain, Paul glowing with sleepy happiness.

This is my informal epistle to you Danny. Rock and roll will never die.

* * *

Paul has been tired lately. Maybe since he's changed rooms, which happened last month. He has a new room mate who seems, similar to him: intelligent enough, capable of sitting up and likes to watch the history channel.

May 19th was Paul's birthday, he turned 62. On his birthday I took him out to lunch and the CNA (certified nurses assistant) said "Oh Paul you look too young to be 62, I thought you were 50s". Then she dressed him for the day.

We brought Paul to the apartment for the afternoon and had some home made cake to Paul's spec's ("vanilla icing, some lemon and white cake" my talented baker friend Christine made it and the lemon curd was to die for). A few friends joined us and we played guitar, harmonica and sang some old songs. Paul sang along on Rainy Day Women. I wonder if he misses getting stoned.

At any rate, a lovely time was had by all.

* * *

I've been feeling called back to life. It's amazing how someones illness, someone dear to you, can just knock the wind out of your sails. Watching them wither, feeling helpless. I realized today it's been nearly a year since Paul moved into the nursing home. A year! And I'm still trying to slap myself out of the drone of daily doing-ness, the over adrenalized business of caring for a quickly aging husband and a vital little boy. Where did I fit into all that.

And so in the past 2 months I've started to run. I'm not sure why I chose running. I guess it came down to this: what can I do to feel good about myself that I can fit into an hour. It would have been familiar and nice if it was performing or recording but those things rely on someone else's participation. But I could go for a run in an hour.

And so I began 'training' to run a 5K (3.1 miles). This weekend I ran my 2nd 5K and my son Alexander ran a kids 1 mile race. We were both thrilled we could make it to the end of our runs and not come in last and share that good feeling with one another.

For me coming back to life is about getting back into this body I was bequeathed. And realizing that my mind and body are not falling apart like Paul's. That as much as I related to/admired Paul, and love Paul, I am not him.

It's time to seize the time we have here, to enjoy this life while we have our health and our minds to think and wonder and cherish.

What are we waiting for?