One More Photo

This was how Paul looked when his old friend Trina came into his room and surprised him with a hug and a hello. Paul was just thrilled to see her. He remembers his old dear friends very well and even chimed in on some of the stories she told. Seeing his loved ones really makes a difference to him. I wish we lived in a place where a lot more friends could more easily drop in. Like in the Bay Area. Paul's brain injury happened only a year after he moved down here to San Diego, to be with me, and that injury made it that much harder for him to get out and meet new friends.

Ccon 2010, And A Special Guest

Paul's dear friend Trina Robbins came to visit this week, she was in town for Comicon and Alexander and I got lucky and scored 2 extra passes!

Alexander really liked Comicon, especially getting to meet his Lego Hero Factory hero.
Here he is on Tatooine with a few old friends and a bag of Lego swag.

Paul and his girlfriend from the 1960s reunite for an afternoon in Encinitas. Trina Robbins is a writer of books and comics for over 30 years. She and Paul met on a flight from LA to Boston in 1967 (he was reading a Vonnegut book and then scooted over in next to her) and dated for a while. Some of their adventures included hanging out in Laurel Canyon with Van Dyke Parks. Trina is the "wampum bead" wearing Lady of The Canyon in Joni Mitchell's song. Paul has always spoken very fondly of Trina.
Underground Comic artist Mary Fleener, CLB, and Trina Robbins, I suppose we're all "tearaways" in our own right. I was just picking Trina up at the Encinitas train station when serendipity struck and we ran into Mary....
CLB, Paul Williams, and Trina Robbins at Paul's nursing home Saturday 7/24/10. We had a lovely time with Trina over cinnamon rolls and coffee at the Panakin. Thanks for visiting Trina!

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.

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.

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)

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.

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....

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?

I Had A DreaM:

I have finally made it out to the east coast for a visit. I'm visiting Ani DeFranco somewhere near Boston. There is a middle aged male friend of hers there and a female friend who is in a lab coat, I presume she is a doctor. I have brought Paul along and he sits quietly on the couch while the rest of us talk about art and artists.

I say to Ani, "I don't know why we didn't meet before, seems like we have a lot of friends in common." She says we did meet in New York City before her first album. I'd met a lot of artists in the mid to late 80s when I lived in New York so, I think, this could be the case.

We sip on herbal ice tea's in tall thin glass's that her female friend has brought in. "Do you think Paul would like one", she asks. "Looks like he's sleeping now, so no", I say noticing that Paul has slumped over on the couch and is taking up most of it. I think its kinda odd but nice that Ani's room has two sofa's, one of them a long rectangle the other one a large L shape. Half the perimeter of the room is lined soft sofa's.

I try to sit Paul up and ask him if he wants something to drink, but he pulls away and plops back down into the softness of the L couch. "Do you want to come see what I'm working on, I've been doing some work with charcoals?" I'm interested, and think about how much I liked Bob Dylan's book of drawings back in the 90s.

"Sure, I'd love to see them, but I don't think it's wise to leave Paul alone..," he stirs a little and tries to sit up as he hears his name. I think to myself 'what was I thinking bringing him out here, he would have been much more comfortable back at the nursing home, but I thought he'd like to see his family. I don't even remember how the hell we made it through the flight and the airport, that must have been so awful that I don't remember it.'

"He might get confused about where he is....," I try to explain. Ani's friend, the doctor who is administering a medical drip to the middle aged man says she can help. "I've got plenty of Haldol here," she pulls out white packets of the stuff. "If you're concerned about him getting out of line this can help." Grasping at something to help me with Paul I agree. She pulls out a fresh packet and I get Paul to stand up. "She's going to give you something that will help you feel better Paul," I say. It turns out the 'pill' is a spray she puts up his nose. It's quick and it's done.

Were walking down the hall now and I'm thinking 'crap, wait a minute, this is the stuff they gave Paul in the hospital during his brain injury and he came unglued one night. The nurses staff had threatened to put him in an emergency Four Lock, which were cuffs to hold his arms and legs down to the bed.'

But the time in the art room looking at Ani's finished and rough sketches is mostly uneventful. With this exception: Ani's doctor friend says to me, "You must know I've been reading your blog about Paul," she looks at me momentarily then busy's herself with straightening the pills and appliances on her nurses cart. "I've taken the liberty to talk to some publishing houses and there is an offer for your book at Harcourt". I look at her dumbfounded, then turn away and wipe away my tears. We head back toward the rectangular sofa room.

As we enter the sofa room I say to the nurse, "You know I'd forgotten that Paul doesn't usually do well with Haldol, but so far so good. Right Paul?" He grunts and then suddenly lunges at me, picking me up like a five pound bar bell. He doesn't throw me like I think, he actually places me down gently on the other side of the couch then rips open my shirt. Ani and her friends scramble around trying to decide what to do. They finally pry me away from Paul and we leave the room with Paul lunging for the closing door.

* * *

It's another day. Same room but our perspective is from above looking down. We see Paul scribbling something on the wall. His mind is working quickly and his hand is a blur as it writes down a series of glyphs. He has a tattered old tome of a book next to him with similar glyphs.

Ani's middle aged male friend comes into the room. He sees what Paul has been writing and his face goes white. "My god man, what are you doing." Paul smiles and points at a repeating line of symbols. "Where did you get....this, there's no way you could understand", says the ashen faced man. Paul looks at him fiercely and slowly sounds out "eee lau loo, eee lau loo...."

"No, no! exclaims the man, "Dear God, You have broken the code!".

The End.

"This is a work of fiction, and all names, characters, places, and incidents either are the products of the author’s dream-time or are used fictitiously. Any resemblance to actual medications or locales, sofa's, or persons, living or dead, is entirely coincidental."

Visions and Visitations

For many years as a writer Paul loved hearing from his readers, he still has overflowing files of both email and traditional mail. The interesting thing is that the fan letters addressed all of his writing subjects equally. The Das Energi readers would feel like he'd changed their lives with his practical philosophy. The Bob Dylan Performing Artist readers felt like his series had more minute details of Dylan's artistry. The Philip K Dick fans knew Paul had been Phil's friend and, after his death, the estate's literary executor and no one knew as much as Paul did about what was "in the vault". Paul also had fans of his general writing on rock and roll some of them became regular correspondents and friends and Paul would mentor them-encouraging them to write for the newer 1990s CRAWDADDY!

It always drew a great feeling of wonder out of me watching him juggle these various writings and careers. When he had his brain injury in 1995 his brain surgeon asked me what kind of work Paul had done, I told him about all the varieties of activities he did each day and the doctor said, " He won't be juggling these careers anymore, but because of his intelligence he could probably handle losing a few brain cells better than the next guy." Paul was able to juggle pretty well after all.

A month after he came out of the hospital and he was still in out-patient rehab Paul was offered a job as music editor for a new high fidelity glossy zine out of the bay area. As I recall I answered the first call to the publisher and told him about Paul's recent injury. He asked Paul to call him and he offered him the job and that was that. Paul held the position for almost a year and it paid well. For the first time we were able to afford to buy a few things. We got a video monitor to play video's but not a TV, Paul paid a friends wife to set up his new computer and get his books for sale on line, we bought a Cannon camera, and we went to Europe. Within a year he was fired from the magazine.

Only five months since his injury and we were flying to Frankfurt and attending its annual book convention and Paul doing a full fledged lecture tour on Dylan and the Rolling Thunder shows. It was nuts. But it worked and he did an amazing job as a speaker.

I somehow knew that if Paul could get back into his way of life quickly he wouldn't have time to ruminate on what had happened to his brain. And getting the attention for his writing, via a lecture tour, gave him some positive strokes. And in Europe he had full houses of listeners, fans of his words and ideas.

* * *

It used to be visitations from fans and distant friends were a positive reinforcement for Paul and reminded him of his relevance as an author, business partner and friend. Now, he has forgotten not so much who he is but what made him feel satisfied, after the writing was done. The friendships and new adventures, the discussions and disagreements, the flirtations and the admirers.

Now, as his caregiver, I 'm at a crossroads. This past month he has had a bevy of visitors. Very suddenly for some reason. All very lovely people. And they've wanted to visit their friend, family member or the Great Man. And I've watched him carefully to see how to handle these requests in the future.

What I've observed is that he is having difficulty remembering friends he made in the past seven years or folks he only marginally knew. For instance, he doesn't remember becoming a member of our local UCC church. He doesn't remember the family we befriended and have traded child care with on a weekly basis since 2003. He knows he knows them somehow, but doesn't remember the how.

He does remember his family. His two grown sons Taiyo and Kenta who both came to visit him this month, and was very happy to see them. He remembers most of his history, when I ask him pointed questions about CRAWDADDY! , but doesn't remember enough to help a Dylanologist who came to ask Paul a few questions for his own Dylan book.

I can see now that some of these folks confound Paul's memory of himself. He wonders out loud are they related to him or how does he know them, though he'd agreed to see them ahead of time. So for this reason, with the exception of long time friends and family I'm telling Paul's fans that he is not up for the visit.

So much of what Paul wanted to say to everyone is in his books, almost 30 to choose from. And as he once said to me, "I am writing these words for my future readers. When I write I can feel their presence". And I believed him to be telling the truth.