Pictures Of This Weeks Paul

I had Paul over to the apartment for a pastry and tea on Monday. Then on Tuesday I took him out to Michael Jackson's This Is It. When Jackson died in June I asked Paul if he'd been a fan and he shook his head no. I wondered what he'd think about Jackson after seeing the new film.

On our way in to the theater we ran into two of Alexander's pre-school teachers from 2006 and we all decided to sit together. It was a 10AM showing of the film and maybe because of the time of day or maybe due to the content, I noticed that everyone in the theater was over 60!

At any rate, Paul made it through the movie and ate a bunch of popcorn and on the way back to the nursing home I interrogated him. What did you think of the movie? "Very real", he says. And do you think Michael Jackson had a vision "Yes, now I can see that he did". What else did the film do for you? "It was a little bit scary." Scary? why was that? "I was wondering if anyone was in charge."

That was all I could get out of him. So was it a cryptic way of saying Michael Jackson was losing it? Or did Paul get confused with all the images? Up to you.

Paul and Alexander

Alexander was born mid October of 2001. Paul and I had been seperated for a year in 1999 and when we started dating in the summer of 2001 I was living in LA. For a while we continued living apart, me in Venice Beach, Paul in Encinitas (an art and surfing community in San Diego county).

I wasn't sure things would work out with Paul this second go-around and I didn't want to dump my super cool job in Santa Monica. I worked as a girl-friday for Lookout Management/Vapour Records a boutique artist management and record company that handled some hefty rock and roll clients like Neil Young and Jonathan Richmond. It was fun to show up at work and have someone interesting dropping by. I had to pick up David Crosby at the Santa Monica Airport once, I had boxes of my stuff in my 15 year old Toyota stationwagon and I'm picking up Crosby. I told him I was married to his old pal Paul Williams and we had a great conversation about the sci-fi writer Theodore Sturgeon and terraforming planets to make them livable, he told the staff at Lookout he was going to steal me away.

After about six months of "long distance" dating I suddenly found I was pregnant. One of those classic lack of insight moments "Geeze, I've been sick to my stomach for 4 days, I guess that salad really did me in". Then I got a grip and took the test. Paul and I were both happy and looked forward to our new life together.... with a baby! The other gals at Lookout, Bonnie and Cori helped me find a name I liked (once we knew it would be a boy). I brought the name Alexander to Paul that weekend and he said he'd thought about that name that week too. So it was decided.

Paul was a great husband during the last few months of the pregnancy, I quit my job at Lookout and moved back to Encinitas to live with him. The landlord put in new carpet and painted the walls and everything was clean and new. A fresh start. The baby arrived and Paul and I had lots of those sleepless nights that babies tend to bring. But we were happy and wanted to do things "right". Paul went into therapy and worked on his relationships with his two grown sons from his first marriage. He was really trying to fix what he'd broken and didn't want to repeat what he'd failed at before. He really did try to make things right with his past.

And he was a great dad to Alexander. The volleyball ladies at our beach still remember him as the dad that would go for walks with his baby in a sling, showing him off to whomever passed by. That first year he was in good shape and so I decided to start working, giving guitar lessons at our home. Then a year later, when Alexander was 15 months I picked up a teaching job at a nearby music studio and Paul stayed home and watched Alexander. Things seemed to work well for about a year, then slowly I began to see that something wasn't quite right.

One day Paul told me he'd left Alexander in the car when he went into Trader Joe's "for about 10 minutes. But I left the window down so it wouldn't get too hot". I was horrified. I told him to NEVER do that again, "you go in-he goes with you wherever you go". Paul agreed. Then I came home to a puddle of red goo being mopped up from the carpet "What's that Paul? " "Oh, Alexander got ahold of the cold medicine and spilled it all over the carpet". Alexander was watching us, he didn't appear to be losing consciousness, so I figured we got real lucky. Then when Alexander was two and a half we moved across town to a subdivision and Paul's mother moved out from Cambridge to live with us. It was an expensive experiment that failed. And Paul was beginning to show signs of something not being right. He wanted to sleep alot, like half of the day. He got angry. We tried anti-depressents. You name the brand- Paul tried it. When we realized that Paxel or whatever, wasn't working Paul slowly stopped taking them, just as the doctor recommended, but when he was off of them he had an episode and bit Alexander's arm.

He didn't tell me about it. I don't know if he forgot...But that night when I got home from work I noticed the bite marks on Alexanders 2 1/2 year old arm and asked Paul "Did you bite him?". He said he did because he was working on the taxes and Alexander kept reaching up for the papers and he didn't want to hit him so he bit him instead. I told my therapist, child protective services came out, by then I'd already made arrangements for Alexander to go to a friends house when I worked. I told Paul "you won't be able to watch your son anymore." I was furious. I just didn't get how sick Paul was becoming. He went from being the doting father that was trying to heal his past mistakes to a sleepy, sometimes angry guy that slouched whenever he walked. Why couldn't he see it and fix himself?

Now I look back and see that it was I that was amiss. Why didn't I see those earlier signs as Paul becoming sick. I knew he had a brain injury. I made allowances for his eccentricities, he was a genius right? But I didn't see the dementia until it hit me with a two by four. The biting incident happened in 2004 and I'm thinking Paul just needs the right anti-depressants and he'll be more like himself, by 2005 my mother and others that have been around loved ones with dementia or Alzheimers are telling me Paul looks like he has It. The doctors keep telling me he's fine.

When we moved back over to the beach in 2005 I thought the familiarity of the apartment and location might bring Paul back, instead he continued to slip further away. Alexander now eight years old doesn't remember his dad carrying him on the beach in a sling, he doesn't remember his dad watching him while I was at work, or the biting incident. What he knows is a father that needs to be watched and not left alone. In kindergarten I overheard Alexander explaining his father to his friends like this, "My daddy has a brain injury and then he got sick."

Now that Paul is in the nursing home I can see it's a relief in some ways for our son. Alexander and I can go out whenever we want, we couldn't leave Paul at home when he was here and it was hard taking him anywhere. Alexander gets more of moms attention now, we read books together and I'm not as stressed out as I was when Paul lived with us. Our lives are simpler, less complicated and their is now time to dream and from dreams come things.

Those Funny Guys With Sad Eyes and Glasses

Scene 1: We see the outside of a hospital and then a shot of a sign:  Brain Injury and Spinal Injury Rehabilitation. Nurses are scurrying about with usual routines, patients are being walked to and from rooms. Some patients are in sitting slumped in wheelchairs around the nurses station. We follow a sterile hallway to a community room where a group of recovering brain injury patients are relearning how to bake brownies with a therapist.

They are a small group, about 3 or 4 men.  They all have surgery haircuts and you can see several have visible stitches in their scalps. They all look a bit too skinny for their clothes. Several are not steady on their feet. One suddenly shouts, "I want my brownie". Another, "Aren't they done, I don't remember them taking this long". The first, " I want my brownie now". Another, "Shut up and sit down". "I wont shut up! I wont!" He tears off down the hall screaming "I'm hung-ryyyyy" he's followed by several certified caregivers. He runs out the front door screaming "Noooooooooooo! Noooo,  I wont!!"

He's raving mad. He's about to run out into the street, he's out of control waving his arms around. "Noooooooo!" Then, as suddenly as his screaming had started it ends and he stops at the curb looks both ways access's there are no cars and walks across the street in an ordinary fashion. Two men watch from a short distance away, one comments to the other, "They're doing a great job helping these guys get back out into the real world."

Scene 2: A loved one is visiting her spouse, sitting in his room she overhears a commotion outside the door. Nurse: "..He's climbed out his window again, they're on it though. He did it the other night too. Took all of the individual window slats off the window pane, very meticulously and climbed out. Then he went screaming around on the grass outside till security caught him. By then he'd pulled out half the staples in his head. They took him to psych, he was way too much for us. Did you see his wife and kids? They're out of their mind with worry coming in everyday to be with him and then she finds out a little something more about his motorcycle accident. He had a girlfriend on the back! She was okay But he aint gonna be okay no matter how well he heals. That man was a dentist, super smart, he'll be okay but I'd hate to see his face when he realizes his wife is filing for divorce! Mmm mmm, the things you see. "

Scene 3: Doctor:  " You see m'am the brain is like a series of roads. All of these little bits of information are moving down neural pathways. Only now that the pathway is gone or under construction the driver has to find a new route. Look at Freeway 5. You want to get to LA but you find a portion of the freeway in Orange County is closed for repairs, you'll have to drive down side streets and frontage roads. It's going to take alot longer. "

Scene 4: Doctor " Your husband has been here two weeks. Physical therapy and occupational therapy both agree that it is time for him to go home now. We will be discharging him tomorrow to your care." Spouse: "But doctor I just saw him run out of the hospital stark raving mad, like a screaming banshee two days ago. How do I know he won't do that at home? How do I take care ....." Doctor: "He's ready to go we can no longer hold him. He knows who the president is, what day it is, and who his mother is. You're really lucky, he's gonna be okay." Spouse: "Great news, but he's not okay now and I can't take him home like this. He puts his shirt on backwards and has to be walked around with me holding his 'safety belt' you guys have on him. How am I supposed to go to work? Plus last night before I left here he got out of bed and went to the other side of the room and pee'd in a trash can. How am I..."  Doctor: Patting spouse on the shoulder, "Paper work has gone through, it's a done deal. You'll work it out, somehow. "

Bound to California or California Bound

I feel guilty. We didn't go see Paul today. I've been home this weekend fighting off some kind of bug. Gawd knows, probably Swine flu. Anyways now it's passed. 

I know I'm not gonna be able to be there for Paul as much as I think I should be. As much as I'd want someone to be there for me. So I've invited the help of friends. Some of them knew Paul before he became ill with dementia, some of them have only known him  a year or two, since he's changed. Some I pay to go see him. Some I bribe.

I don't care what it takes. I need people to see him and it can't all be left to me. And It's lonely in those rooms. Most of the old folks living there don't have visitors. I saw a new guy on Monday, looked young. Brain injury I thought. 

The home has been spending money fixing the place up. They have nice floors that are fake wood, but mop-able on a daily basis. And they've put green and brown pastoral art on the wall. New wall paper and paint. And new counters at the nurses station. 

What's up, are they getting ready for a sale? At any rate, it creates a pretty nice atmosphere for visitors.  A new student nurse stopped me the other day, " I know you! You used to teach my son guitar. Is that your father? This place is sooo much nicer than the other homes I've been in around here."

This week Medi-Cal finally gave Paul a case number and put in a request from me for various documents. You know, car registration, pay stub, bank statements. They want to know how much money I have. I'll bet there are a lot of people suddenly trying to get disability or Medi-Cal now-a-days. And the state of California is doing everything in its power to get rid of us. 

Paul was turned down for Medi-Cal in June. It was a blow. We'd applied back in February and after all that time and money, Paul was still living at home and I was paying for a sitter for him, and then we get rejected. It was back to the drawing board. 

They turned us down on a technicality. I'd heard about a program here in California that protects spouses  from impoverishment. The social worker told me it's not a well known program and that the state doesn't want you to know about it, 'cuz they lose money. A spouse is allowed to own a home and have a limit of $109,000. in the bank. Plus, if your monthly pay check is not over $2700.00 a month , you are able to keep some or all of your husbands disability check. 

What could be better for a starving artist? If we end up qualifying for the program, which an elder advisor of mine is certain of, I'll be bound to California. (Weren't we all California Bound in the last depression?) And so will Paul and so will Alexander. 

So there goes the living on the east coast: touring up and down the eastern seaboard-doing a show every night in cities where people still read books and newspapers. And there goes Alexanders early entrance into MIT (he wants to be a Lego Designer and an Astro-physicist when he grows up). And Paul being near his brothers and mother. 

I don't know that I really would have moved us, it takes guts and a lot of money. And my family has been in California since the 1800's. But I did a little dreaming and a little checking on realtor.com regarding the plummeting prices of homes in Chapel Hill, NC  or Boston (I love going to realtor.com ). Maybe someday I'll have money for one of these here foreclosed dream deals. In the meantime, 

I don't feel too guilty. I paid a friend to go see Paul tomorrow. I'll be in better health by Tuesday and Alexander will be over his Swine flu live vaccine by then.  And the documents will be copied and off to Medi-Cal.  And I'll have qualified and won the lottery. I've worked it all out now. I feel better already. 

Big Red Ball

Today Alexander and I took Paul out to the park, just like last Sunday. When we got to his nursing home he was dressed with his lunch sitting on a table beside his bed but he was sleeping. It's a bummer when you tell folks to be sure to get him out to the cafeteria to eat each day and then find him sleeping away at 1pm. Look I know they have a lot tougher wheelchair cases to look after so Paul is easy to ignore. Nonetheless, he needs to get up and walk around. 

We took him to a local park and brought Alexander's big red bouncy ball. Last week Alexander and I threw the ball around a bit while Paul sat on a bench. When Alexander grew tired of this he sat and read his Jedi Masters book for awhile and I tried throwing the ball with Paul. It was a hit! 

For you that don't know Paul's condition currently, he has little energy for walking , though he does it okay, he's not too steady on his feet but he certainly isn't ready for a wheelchair. He also has a thing where he often has one eye closed at all times, something the neurologist calls a tic. 

Once Paul and I started throwing the ball back and forth that eye suddenly opened. He stood up straight and was a whiz with the big red ball. All of his bending over stopped and he was a good judge of the spacial relationship between us, throwing the ball at appropriate speeds and lengths on every pass. It was pretty remarkable considering his deteriorated physical condition. 

I had an idea: if his brain worked better while playing ball maybe we could expand it into the verbal realm. We played a game he now calls: word association catch. Throw the ball say a word and the next thrower returns the ball with a word or phrase related to the first. He sounded more like Paul then the attempts I've had at conversing with him.  Beach became Brian Wilson, San Francisco became Grateful Dead and so forth. 

We've actually stumbled on a way to talk. Today we brought little Alexander into the mix and everyone got involved. 

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Yesterday I got an email from an artist that has been asked to do my portrait for a city sponsored event. He wanted to know what the three most influential artists have been in my life. These kinds of questions are always difficult to answer and the decisions often change. I picked three artists that have been with me since I was a child, and somehow still move me. Brian Wilson of the Beach Boys, The Beat Writers: primarily Allen Ginsberg and Jack Kerouac, and a painter named Chesley Bonestell.  

When I was five years old my mother bought me a piece-meal collection of encyclopedias from the local Lucky's grocery store in Hermosa Beach. Several of the books included some of Chesley Bonestell's work. One of my favorites was his depiction of the Earth's early days with oceans full of red lava and asteroids falling into the atmosphere. Who wouldn't like that? But my favorite, the one that inspired a great deal of wonder, was a picture at the end of one of the books. It's an imagining of the Beta Lyrae star system which includes two star bodies toiling in a difficult relationship, they exchange material and share a common atmosphere. It's an eclipsing binary with one star basically pulling all the material from the other. 

I'm not sure what drew me to these torrid pictures at age five. Sometimes art can speak for us in ways that words can't.  And help us process complex feelings. So too with music. And sometimes with playing ball. 

The Doubter and the Manifester

A couple of days ago I heard that Texas folksinger Steve Earle was coming to town and playing at a tavern near our place. I've rarely gone out these past 3 years, which my old friends can attest to, but I had an epiphany Sunday night and realized I need to get out to see some music more often. Even if it costs me my hard earned cash, from giving guitar lessons. 

Epiphanies come in multiple doses, so if you don't get it the first time you might get it the third. I can point to several instances this week and they come from odd angles (er, angels).  I read some interview quote from Guy Richie, Mr Ex-Madonna saying his wife was an "Number one Manifester".  Manifester? Wow, what a word, I haven't heard talk like that since the New Age-isms of the 1970s. But it's a good word for what some folks can do. 

So I asked myself,...what have I "manifested".  These past six years since Paul's memory began to fail and his body began to slow and bend, like a battery operated doll winding down, I have put all of my Manifesting powers into trying to fix him, to not much avail, and then to find help and a nursing home for him . So I did it! It took alot of Manifesting really. 

I went to New York City last year and met with friends of Paul's that wanted to help us, they put up  the donation website for Paul ....www.paulwilliams.com     which generated enough money from Paul's fans and friends to help us get him into the home he's in now. All these wonderful friends helping us out, it has been remarkable. And if you are one of them, I thank you from the bottom of my heart. 

After the Manifesting thoughts, I thought If I can do that for Paul maybe I can help myself in some way. That's when I realized that getting back to playing my own music and maybe earning a few new fans of the new songs wasn't utterly hopeless. 

Here's where Steve Earle comes in.  I decided on Monday that I really needed to go to that show. I know his music to some extent, but I've mostly been listening to his new album of all Townes Van Zandt songs. And its very good. I've turned on a few friends to its particular charms. 

Steve Earle got to know Townes when he was a teenager growing up in east Texas, apparently Townes went to a show of his and heckled the young Earle with "play Wabash Cannonball!" between songs. Until at last Earle admitted he didn't know it, then proceeded to play Mr. Mudd and Mr. Gold. A complex song, by Van Zandt,  that is essentially a riddle asking the listener to guess what card game is being played. 

I went backstage and gave Steve a copy of Paul's "Dylan: Performing Artist" book and talked to him a bit about finger-picking. I said "How fortunate for you to have had such a great mentor as Townes". But later I realized that the fortune was mostly Townes for having Earle as a torch bearer, carrying on his vision and songs well after his death. 

In these past few days I've come to realize there is hope. As Paul once told me, early in our relationship, I am a doubter. It's true. I doubt until I'm shown what's real. I even often expect the worse. And that I believe is something I learned from having a mother die on me at age eight. 

Maybe my music will one day have it's own Steve Earle. Someone that can carry those songs to a place I can't see.  

I had a conversation with a music friend a few weeks back and we were assessing and complaining about the music industry and how it's so easy for a songwriter to feel unsupported. I told him that after I write a cycle of songs, get them on an album and get it out to the public it's hugely deflating to see that baby go unnoticed, which makes it hard to get it up for another set of new songs. 

Here's where my inflated ego comes in handy. I admit to having a voice that takes some getting used to (so does Neil Young, Bob Dylan, Steve Earle etc), and I'm not reeling off astounding licks on my guitar at Van Halen speeds, and I don't have big budget sounding production. I do have songs that I can listen to a decade later and still believe in. I can put them up next to any number of my peers (Alejandro Escovedo, Lucinda Williams, Steve Earle, etc) and still feel great about them. And that is the thing that keeps me writing again. (Of course it certainly helps when someone writes a fan letter). 

And now, it is time to write another collection of songs. Where they end up nobody knows. But I've got four new ones already and an inflated ego and I'm a Manifester. 

My Most Recent Project

Now that Paul has been placed in a home, and hopefully that dang Medi-Cal Insurance will kick in sometime relatively soon, it's time for me to find a new place to put all of that energy I was using to get him situated. I'm sort of at a loss. 

I've always been a very focused person, there's always been a musical project needing assistance or some kind of writing (my mom recently found a copy of a 60 page script I wrote as a sequel to Star Wars written in 1978, haven't read it since then), and in the past 8 years raising our son Alexander. Neither Paul nor I were into vacations, it seemed like a waste of time away from our projects. My idea of vacation was playing 20 dates on a tour of England and having a day off to visit Stone Henge (the next day I had just enough time to climb the Glastonbury Tor). 

I've spent the most of the last six years trying to figure out what was wrong with Paul. He'd made such a marvelous recovery from his brain injury in 1995. In fact, within six months he was on a book tour in Germany (I went along to supervise the arrivals and departures) and lecturing about Bob Dylan's Rolling Thunder period, to full houses, and effectively! *gasp* It was thrilling to see his recovery and the doctors called him a miracle, saying, "he was obviously such a genius he had brain cells to spare". 

His family was pleased. I was a saint. But not everything was hunky-dory. His driving had taken a distinct turn for the worse. I was shocked that following his release from the hospital and then the out patient rehab that no one showed the least bit of interest in his possible inability to drive a car. The doctors didn't even have to tell the DMV about his brain injury and so he received his new drivers license without a hitch. Not to mention the fact that he now had a large bit of black out on his left peripheral vision. A doctor friend checked him on it and told him "just make sure you give an extra look on that side to make up for your vision loss". That was it. I got scared when he drove. Sometimes he'd lose sight of the main highway and go off an exit thinking the highway had just made a right turn. I went to a Kaiser therapist and she told me " he's just like a lot of old folks on the road, I think you should just relax and let him drive". She was an idiot and obviously had no experience dealing with someone with a brain injury. 

.....Ah, now you see I've gone off on this tangent regarding the driving....and so I must take a break and leave it for the next entry. It has become too late and I am fading into the cast of stars...