Traumatic Brain Injury And The Bank Book

As tax time approaches I am reminded of tax times past. And budget making. In conversation recently with a good friend I mentioned how nice it is to be in a place where I don't owe anything. Not that I don't have bills, like: rent, food, child care, phone, etc...but we don't have credit card debt or mortgage debt. A few years ago, when everyone I knew was buying a house or trading up...I felt kinda like a loser, ya know renting. (I read an article though around that time that asked the question: Where do you want to put your money, a house or travel? Personally, I'd rather travel, I know Paul felt the same way.)

At any rate, it wasn't easy to be debt free, we had to make some decisions some while back. When I met Paul in 1992 he was very keen on the idea of keeping out of debt and had some very low numbers on his credit card. At that point I'd never even had a credit card. In 1994 we began living together here in Encinitas, I got my first credit card and was able to rent a car to go on tour and play gigs, it was great. I learned from Paul that I needed to pay off the amount on the card as soon as possible. That was all good.

In 1995 Paul's traumatic brain injury (for new comers/bike accident, no helmet) happened and he was in the hospital for a month and then outpatient rehab for another. I was so involved in the caregiving that I barely kept up on the bills. That had been the thing that Paul did. He was Mr. Responsible-Guy. When I got around to paying bills I noticed there wasn't much to pay on his credit cards which was great. After a few months Paul was "better" and back to taking care of our bills.

Now jump to 2002, Paul and I had a one year old baby, and Paul tells me President Bush and crew will be doing away with the kind of bankruptcy that allows individuals to escape from extreme credit card debt, and he thinks we should file.

I had about eight thousand dollars accumulated on my card, all from urgent medical type stuff, but Paul had a debt of over fifty thousand dollars! I was stunned and agreed to go through with the bankruptcy. After the bankruptcy took hold and we were released of our debt load my credit card company called me, the guy on the phone said to me "you paid your bills up until the bankruptcy and it was only $100. a month, you had great credit, why did you do it?" I told him my husband had fifty thousand on his cards and had a brain injury." He was sympathetic and agreed he'd have done the same thing.

Here's the puzzle: After the brain injury why did I think Paul could still handle the bills, and could pay for most everything, like he had before? Clearly, the fifty thousand dollars had accumulated over the years since 1995.

Years later a good friend and I poured over Paul's past bills and paper work, strewn around his office in a crazy godforsaken manner, we found signs of his growing dementia and perhaps even signs that he hadn't "recovered" from the initial brain injury as well as we'd imagined. Paul had been using his credit card to pay for some of our most basic expenses, sometimes rent, often groceries...the kind of stuff you never want to use credit for, and the stuff he would have never bought on credit in his pre-brain injury mode.

I thank Paul now, for pushing us, convincing me, that it was imperative to file bankruptcy. In a way, it was the old Mr. Responsible-Paul showing himself again for a brief and final interlude. I see it as Paul, on some level knowing he was falling apart, falling into dementia, knowing he wasn't coming back and setting things straight for the future, for me and our young son Alexander.

Whether credit card bankruptcy should exist (it doesn't now)...I don't know. I do know I'm thankful that my family was given a chance to get out of a terrible debt, that I wouldn't be able to handle on my own today, that was caused by the confusion and denial surrounding traumatic brain injury.

Paul Williams, Philip K Dick and the Buddha

A few months ago I made the dreaded trek to our storage space, in fact it was prompted by a visit from Paul's dear friend Laura, she very kindly offering to help me pilfer through some of the many files of letters Paul kept. Letters and papers related to her father, visionary science fiction writer and literary hero

Philip K Dick. A good number of films have been based on either writings of Phil's or inspired by his writings (Total Recall, Blade Runner, Minority Report etc). As many of you know Paul was a friend of Phil's and after Phil's death in 1982 the family made Paul the literary executor of the estate.

There, at storage space 44, amongst the boxes of papers, cassette tapes of multitudinous Bob Dylan shows, varieties of used books, and Paul's own books, I found a virgin box of his books called Only Apparently Real, which is a charming little book about his friend ship with Philip K Dick and conversations with Phil including the 1975 Rolling Stone profile piece.

I have a lovely relationship with this book. It's very dear to me. It was one of the first of Paul's books that I read after meeting him in 1992. Recently I've ventured to rereading it, loving again, the first paragraph in the introduction....

"To give a sense of who Philip K. Dick was or is, I must bring him into the present, or, if you prefer, bring you into his presence. Often what we feel when we are struck by a person's writing or music or art is the presence of that personality; Picasso is a good example. Some personalities dominate us completely by charming us constantly. This can be a problem in life or politics, but in the creative arts it is most desirable. Consider Mozart or Shakespeare. And such is the nature of charm that we often fail to notice that we have fallen under a spell. "

* * *

In the stories of the Buddha there is often a reference to a friend of his, the venerable Ananda who accompanied the Buddha, it seems, most every where. Ananda appears to be one of those guys that has the genius capacity to remember everything spoken. And indeed that was his job with the Buddha, he remembered what was said at a speaking engagement and relayed it back to the community of monks. An especially formidable talent in a time where few could read or write.

This Ananda character has always fascinated me. Someone who had that kind of memory, remembering whole speech's or conversations. It's an unusual genius. Something that seems to be in savant realm. As a teenager I had a friend who had an older 30 year old brother they used say he was mentally retarded, Rocky, he could remember every line from a TV show he'd seen, or who said what in an Abbot and Costello film. He was a savant and a sweet heart.

Paul had this kind of memory. He really had an immense ability to retain facts. You can see this, to some extent, in the conversations transcribed in Only Apparently Real. Often Philip K Dick defers to Paul on information about Phil's own life, dates and times. Paul becomes a sort of Ananda to Phil's Buddha.

* * *

In 1999 Paul decided to memorize The Diamond Sutra from the Buddha's teachings. He was proud of the fact that he could take a walk on the beach each evening and recite it to himself. It was impressive but I wondered what it was for. He didn't talk much about what the words meant actually.

Paul and I were separated most of that year, shortly after we got back together Paul went on retreat at our local Buddhist monastary, Deer Park, which is a community started by Thich Nhat Hahn (who mostly lives in France) and his monks and nuns. Thay (Nhat Hahn) was over seeing this retreat and invited the community to go on a silent mindful, slow walk up the nearby mountain one afternoon. Near the top the group sat or stood in silence looking out over the California chapparal. Then Thay invited the members of the group to speak if they so wished. Paul spoke up quickly, according to him and a friend that was present, and began to reel off, in its entirety, the relatively long (maybe 20-30 minutes) Diamond Sutra.

What did Thich Nhat Hahn do, I wondered. Did he keep his cool? Evidently, though several community members tried to get Paul's attention and get him to stop, Thay did not. In fact he asked Paul to continue allowing him a chance to play out his Ananda abilities. I'm told Thich Nhat Hahn sat back and enjoyed the view and the words.

PHOTO/ UPDATE

On our way to pick up Paul in the rental car we've had for 3 weeks. I'm gonna have to buy a car this week. Oh boy (sigh).
Alexander and I brought Paul home from the nursing home. He gets about 2 showers a week there. That is he sits on a plastic stool and water sprays on him and he soaps up a bit, brrrr. So I set him up with a bubble bath here at the apartment. He was so thrilled he fell asleep within five minutes. (from a spouse's perspective: I rarely see Paul unclothed anymore, it was weird in a way, seeing Paul asleep, naked in the bath, and thinking...if it weren't for his dementia he could be laying there bathing, like he did 9 years ago, he doesn't look that different. Sad, someone so healthy physically and the mind just not. He'll probably live to be 100 like his grandfather )
After his shower we sat at the computer and took some family photos. I let Paul push the button to capture a moment or two of his choice.
The family that mugs together stays together, eh?

* * *

Update: post car accident.

Our car was officially declared totaled last week. Now they'll be sending around some kind of check for me to go out and buy a new car. It turns out the guy that caused the crash is in dispute as to whether he actually has insurance or not. Apparently he hasn't paid his bills. At any rate, he was driving a rental car and I'm told the rental company will then have to pony up for the bill.

As some of you friends know, I've been coping with alot of lingering head and neck pain post accident. The hardest part for me is not being able to get my constitutional exercise which is normally running 1-3 miles about 5 times a week. It sucks. And then the second hardest thing is being at work, teaching some really cool kids that are excited about playing guitar riffs, and having to keep on the thermal shoulder wraps and doing the advil. I'm hoping to pick up some vicodin at the doc's this week. At least a glass of wine helps in the evenings.

I'm able to do about half as much stuff as normal, kinda pacing myself. Alexander is doing much better. He has some neck and head pain when he's working for an hour or more on Lego's but otherwise he says he feels pretty good. We've both been going to a chiropractor. I've also been talking with a local attorney that was recommended by a good friend.

Readers of the Future

Here's a song I wrote last night, inspired by something Paul told me many years ago (ed.-someone chastised me a few months ago for not saying who Paul is, if you need to know look at my little description of this page over on the far right)

Paul's books were on a series of small publishing houses. When I met him he was writing a book called Rock and Roll: the One Hundred Best Singles and he didn't actually have a publisher for it. Apparently he'd had one in England but somehow that had fallen through about half way through the writing of the book.

At any rate, I asked Paul if the lack of a current publisher or the prospects of being on a small one had an effect on his writing or finishing of the book. Not at all he said. His answer was honest and deliberate, something he'd worked out and set to work in his brain, and was able access in the face of any doubt. He said he could "feeeel the future readers" as he wrote the words. As though they were reading them as he was writing them. And that was the thing that spurred him on.

In fact, the stunning thing about the way Paul worked was he had little interest in where the book might end up, that was something he'd work out once the writing was done. And then when it was done, he'd be on to some new writing and let go of the economic hopes or failings of the last one. All that mind-kipple never seemed to impede his progress.

The painting of Paul is by Drew Snyder.

Car Accident Reflections

Night before last Alexander and I were in a car wreck. We're okay, sore, no broken bones, recovering, still have our wits.

* * *

Many years ago, back in 1990, I had a yogi friend named Tom. He'd been to India to study with some heavy spiritual types including one of Richard Alpert's gurus, Neem Karoli Baba. Tom was a disciple of sorts of Hanuman and sometimes lived at the Hanuman Temple in Taos. He was a free spirit, a twin to my own Gemini wiles and one of those kinds of friends you have for a brief but important passage of your life.

Tom was helping me pack my belongings into the back of my newly bought yet thoroughly battered 1970 VW bus. At some point during the packing I hit my head on the roof, not hard but enough to stop me in my tracks. And I started crying. One of those moments Tom called an Aha. It was a marker for an important time of change in my life, and he knew it. I was moving from New York City back to San Diego and I'd made a six month stop over in Taos New Mexico. Sort of a clearing of the energies, a place to hang my hat and have a few adventures and decide where I was going next in life.

Tom sent me off with a picture of his guru and stuck a little stamp sized sticker of the Indian trickster god Hanuman on my dash board. I didn't think much of it...until 2 weeks later I'm in San Diego, staying with friends and my VW bus starts honking at 3 o'clock in the morning. You see, one of the oddities about this old bus I'd bought from a Taosino was that it would randomly start honking it's horn when you'd start the car, not every time, but maybe every 3rd time you'd crank the motor.

I ran outside to see two scruffy guys in my bus, which was still full of almost all of my stuff, frantically trying to get it into gear, while the horn is honking away like crazy. I yelled at them "get out of my car", but they pulled away from the curb and slowly got the bus to move on down the street turning a corner and then out of site.

Days later the police found the bus, I went to the tow yard to see if there was anything I could salvage. Nothing. Not even a tire. Just a hulk, a shell. Not even a scrap of my belongings were left in the car. Well, the only thing left behind by the car thieves was the small stamp sized picture of Hanuman. It had been ripped off of the dash board and the mischievous monkey smile was glaring at me face up on the floor of the car.

I didn't even have a belt for my pants. Alot of my stuff was gone. Strangely, what was at first a very bad thing, having nothing, made room and time for a new life for me. Out of this came my Garage Orchestra album and a whole new way of approaching music. And then meeting Paul, who was, as he attested at the time, the embodiment of The Fool.

* * *

And now, for the first time in many years, I have no car. Our car is in a tow yard, very likely totally unfixable. I can rent and find a way to buy one again. But it's that bump on the head time again, figuratively ( fortunately I didn't hit my head in Friday's car accident).

It's the time in between fixed points.

* * *

As for our car accident, Alexander and I were traveling home from his piano lesson and my giving a guitar class. We were heading south on old Coast Hwy 101. It was drizzling and dark. I was going my customary 30-35 miles per hour, cuz it's a bit of speed trap right in there. On my left are multi million dollar homes on my right a guard rail and about 10 feet of bluff dropping 50 feet down to the ocean.

Suddenly a black sports car, out of seemingly nowhere, backs over the double yellow line into oncoming traffic, which is me. He was backing up fast and there was nowhere for me to go except for head on. Brake for 2 seconds and brace for impact.

I don't know what happened for a few seconds, I had my eyes closed during impact, but when I opened them we were moving forward again toward the guard rail and the ocean bluff. I pressed as hard as I could on the brakes and we finally came to a stop. My son Alexander, who's nine, said he couldn't breath but then he started crying and I knew he was breathing. I grabbed my cell phone and ran to the back to be with him, trying to remember how to dial 911.

A lady came over and said she was a doctor and lived across the street she looked at Alexander and stayed with him while I looked out for the ambulance. When finally it came my legs went weak, I didn't have to be the strong- hold it together force now. The paramedics took over eventually determining we were okay, but transporting us by ambulance anyways to get x-rays and evaluations...

And thank you to Susan and nine year old Guthry Hahm for being with us at the hospital, calming our nerves, bringing us back to ourselves. And thank you to all of you that have left us heart felt comments on FB and by email.

I Should Be Doing Something Instead I'm Doing This

While some say they are afraid to look on the Infinite

the great big story we play out,

Some of us here have found a home

and the infinite is our window out.

* * *

in a trip to the Sierra Nevada's

at a very young age

my mother drove us east of Delano

and I became a little girl lost in the snow...

wandering away from mommy

lured by damned curiosity

and down a snowy hill

and past an old wood house

past a road

'til new snow began to fall

and down some more

and she knew she was alone.

she knew this for the first time:

she must awaken, become more.

and her own engines began to fire

her mind sputtered, sparked, started

then hummed

and she was afraid

She was in a place She'd never been before:

it was silent as snow

it was LOUD, with many voices

it was strangely familiar.

It was home.

and she turned around

retracing her steps

finding her mommy standing with nervous park rangers

her mommy, so long ago,

her mommy, who seemed like a stranger.

first secret. welcome home.

(Dec.5,2010)

Meeting Paul, Part 2

Paul and I rendezvoused at Canters Deli on Fairfax, it was the day after we first met, at the Dylan Pantages show of 1992, it was about noon. We shared a pastrami on rye and some pickles. He brought along the manuscript to a book he was working on, The One Hundred Best Singles of Rock and Roll.

It wasn't finished, but he'd already written about three quarters of it. He showed me the table of contents and had me pick out a song on the list and then proceeded to read it aloud, over sandwiches. I'd chosen the chapter on the Beach Boy's Don't Worry Baby/I Get Around, it's still one of my favorite pieces of writing by Paul. (Sadly I don't have a copy of the book around the house, or I'd quote a passage.)

Paul was really easy to talk with. He didn't have an attitude about his past and it was fun asking him about the cool stuff he'd done. We finished our lunch, paid the bill, gave a bum a pickle on our way out and then proceeded to drive through LA to Santa Monica in my 1971 VW bus. I'd just made the trek up that way a few weeks earlier with my friend Mark Fried (formerly of BMI Music). We'd driven all the way up to Malibu in my bus and visited Papa John Phillips at his place. Now Paul and I were driving up that direction and talking about the process of music making and it's spiritual ramifications, talking the whole way.

I played him a song I'd just recorded, (something that's never been released called Cindy's New York) with some of my first experiments in self production. Paul really dug it and said he could feel the Brian Wilson type producer in me arising. I was amazed he could see where I was trying to go. All this was, of course a year and a half before I recorded my first self produced album, Garage Orchestra. He shared with me a concept he had about Brian as a "primitive" that is an artist formally untrained- that feels the music, hears it in his head and then has the ability to translate it via other musicians.

That idea still fascinates me, what exactly makes one a primitive? At any rate later in the year, as Paul saw me write and process the music that was to be Garage Orchestra, he used that phrase often to explain my own way of interpreting the music running around in my head. I don't think the head of Warner Brothers, where Paul introduced me and my music to the great Lenny Waronker, understood that phrase any better than me.

We drove back to Canter's and I dropped Paul at his car, then drove the 2 hours home to San Diego. On a cloud,.... (of exhaust from my 1971 muffler).

There are times when you meet someone where you feel the future and the past in the present moment. It's where our linear idea of time breaks down, doesn't make sense. It's important to recognize these moments.

For Paul Williams

I dreamt you were accepted by an exceptional elder care facility.

And I was glad to get you out of the place where they know your name (Mr. Paul) but not who you are and don't have time to know anyways.

And they lose your glasses. Again today.

We moved you to the new place which was just down the street and found your bed which was an upper berth. The patients slept in layers, of which you were near the top.

They knew your name and the same lady nurse waited on you. Bathed you carefully and clothed you in warm clean clothes. They put your name on a cloth tag and sewed it into the fabric of every garment. Carefully and with precision.

I love you. But I don't know if you know what that means anymore. And anyways, I'm not there to tell you that everyday. I know you smile when I smile.

I don't know how we could afford this new facility, it must have been we won the lottery. Or a scholarship for artists that did great work in their lifetime. The MacArthur Grant for severely ill genius's.

I was happy to have you in a home, with a garden, that was as caring and skilled with their clients as you were with your work, your writing, your books: the hours spent listening to a single piece of music so you could learn it's language, it's secrets which you could so effortlessly convey to us readers. And we would think, you knew something that we'd been thinking all along, and 'how does he know that?' 'How does he know my language?' And through this, you sacrificed your hearing for us. So that we might come to understand, that we are a community of thought/of feeling within this beloved piece of music.

When I left you there, standing in the hallway, a nurse by your side. I saw you'd become a child. Only 3 feet tall. Helpless, innocent. Someone I felt torn, heartbroken to leave for the night. But I knew, behind it all, you were in good hands, better than my own.

Gods.

First Kiss and Stupid Ruminations

Here's one of those things one doesn't want to talk about when you're married to a guy with deteriorating health, in this case dementia (might be different if your spouse still has his wits about him and you could share in the weird health issues). What does one do for companionship?

My girlfriend went through a divorce recently, things ended amicably enough, and I've been watching her experiences like a hawk. First she got right online and signed up for a number of those Internet dating interfaces, like Match.com or Plentyofish. She'd come over and use my computer and I'd get to watch how she sorted through the guys. I think this sort of "dating" might work for someone that's very visually inclined. I don't know, and I guess I really don't get it. But watching her adventures (and misadventures) has been a great amusement to me.

For one thing, she's decided at this age, (that is, past the desire to engage ones diminishing biological clock) that there are a lot of "Santa Claus'" out there. Okay, maybe I'm being a f*ing jerk, but what is it with some of the guys after the age of 50? Maybe too much beer or pasta...but then the beard comes out and the handle bar mustache and the Harley and the ripped tee shirt and the big ol' arms with prison tat's, (okay, maybe that's just my hometown)..... Some of the guys list old rock icons as the music of choice. So these guys won't have heard of Sonic Youth or Beck ("yeah, Jeff Beck!), or Elliot Smith or Kings of Leon or most anything past 1976.

It's tough. My husband Paul, is 62 years old and has early onset of dementia due to a brain injury (he'd actually recovered from back in 95) he lives at a nursing home now and he looks pretty good compared to some of the guys the website suggests for her. Then there's the problem with the 'content' or text on the profiles with misuses of words like there, they're and their (spell check? and you can tell when its a typo). Or, where I live, by the beach, many of the guys are hoping for a retirement in Tahiti in a few years.

Paul and I used to talk about the concept of retirement. Artists don't retire. Why would we want to stop doing something we love to do?

Whatever. Okay, I admit it. I am being a f--ing jerk.

And I'm not the greatest catch myself.

I'm worn out from years of caring for someone. I've still got Paul to care for in some small ways, and for, I'm sure, a long time to come. I'm lousy with a need to have some enjoyment, fun even, just as a distraction from the immensity of sad from the past 7 years. It's not like one sits around feeling sorry for oneself. I think it doesn't work that way once you're past the shock of it all. It's just the constant juggling of making daily things work right and putting up with the little indignities. Who will trims his finger nails? Who is in charge of making sure the nursing home finds his belts, so his pants won't fall down? Talking to the nursing home barber about not cutting his hair into a freaking crew cut, again.

I'm certainly no great shakes. As a musician I make a essentially what would be called a poverty level wage and I have a 9 year old to raise (a lovely one to be sure). On that note I just got a call today from Section 8 housing, which helps poor folk get into affordable housing. I'd signed up for it about 5 years ago, when things were so terrible with Paul living at home, and I guess my number has come up. The catch is though, you have to live in a place with others that are on Section 8 housing and that is probably not a block and a half from the beach like where I live now (and have lived for the past 16 years). Decisions. It could save me money, probably $400 a month, which could pay for 2/3rds of my health insurance, but I'd have to live in a place not nearly as nice as what we have now.

So there you have it.... I'm a loser, living amongst losers looking for losers. Aint it grand?

But no complaints. I had my first kiss in way too many years, and life is indeed, very grand.

Three Photos

Paul and Alexander Williams, Oct. 24,2010. This was the first of the three photos. I showed Paul the book I picked up a few weeks ago near Harvard: Patti Smith's Just Kids, and I'd bookmarked the page where she mentions her admiration for Paul and Crawdaddy magazine. He was very interested to read what she said and continued reading a few pages after. He rarely reads nowadays so it was nice to see him enjoying a book.

Paul often has one eye shut. The doc's never did figure out just why that is, speculating that it is a tic, like the bending over he does every minute or so. I asked Paul to open both eyes for this photo and you can see how hard it is for him to do. He really concentrated to make himself do it. I think whatever is going wrong in his brain is affecting his eyesight. Clearly you can see in this photo, he has a sort of 'wandering eye' gaze now. Something he never demonstrated until the last few years.

This one was the best of the three

photos Alexander and Paul look at ease with one another and Paul is relieved that he can close his right eye again. Alexander has a very minimal relationship with his dad, even before Paul was moved into the nursing home, but he does like seeing his dad smile. And Alexander consistently makes Paul smile.