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. "
Monday, October 26, 2009
Sunday, October 25, 2009
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.
Sunday, October 18, 2009
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.
* * *
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.
Wednesday, October 14, 2009
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.
Tuesday, October 6, 2009
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...
Sunday, October 4, 2009
I met Paul in May of 1992 at a Dylan show at the Pantages Theatre in Hollywood. I was on a date with a friend of a friend, a nice guy, (and I still feel guilty about how I kinda ditched him that night). I knew I'd see friends at the show and I kept making excuses about needing to go to the bathroom or needing a drink from the bar and I'd leave him sitting there waiting for his date to return and Dylan to begin.
Out in the lobby I did run into folks I knew, but I was surprised to see my friend Andy Paley, one of Brian Wilson's co-writers and ex-best friends, among them. I was on a big Brian Wilson/Beach Boys music jag at the time. I'd always say that it was " informing my new music" and it was ...but mostly Brian's music and life story was a great narcotic for a girl still reeling from a broken New York romance (and lost record deal and lost-stolen car, lost booking agency, manager,...) . The smokey phantasm of Brian's great music lead me down a yellow brick road into an enchanted forest of weird dreams which included some Beach Boy "visitations"; new friends related to the Beach Boys story (Andy being one of them) and a brand new song-cycle of tunes having nothing to do with the lost New York boyfriend. I still remember zoning out alone, after my funky VW bus was stolen (along with all my belongings as I'd just moved back to San Diego from New York) listening to the Surf's Up CD, the song Feel Flows captures that hazy rapture perfectly, you don't even need the hash pipe.
Along with Andy, Dominic Priore was in the lobby and Wes (John Wesley Harding), and Paul Williams. It was remarkable meeting Paul, I'd just read his old CRAWDADDY! pieces on Brian's SMiLE period. We hit it off right away. I was very happy to talk to another Brian fan and asked him if he'd join me for lunch at Canters the next day. I wanted to ask him a million questions about what it was like smoking pot in the tent at Brian's house back then or what did the SMilE music sound like on those original acetates.
We met the next day and shared a pastrami on rye and then proceeded to talk through the rest of the day. Paul then invited me to come back to the Dylan show two days later, on May 19th and join him and his wife Donna. It would be Paul's birthday.
I wouldn't say I fell in love with Paul that day but he made a huge impression on me. It was just such a pleasure to meet and talk with another lover of music and not feel the least bit geeky about it and have it parlay into discussions of Stephen Hawking's theories of black holes and Science Fiction or whatever. It's always a great kick to meet a fellow traveler.
Later I was to realize that this experience I'd had with Paul, a kind of intellectual elation, was not particular to me, others had had it as his friend or through reading his books and essays.