Tuesday, December 16, 2014

Thank You!

CLB at Casbah w/X, The Blasters, Otis
photo by Otis B

We Did it!
As we wind through the last five minutes of this fundraiser for my 7th album I reflect on where I was 30 days ago; afraid to start this thing, wondering if anyone would contribute, and thinking it was crazy to do this before Christmas. And here we are 30 days later with an amazing, astonishing outcome of over 19 thousand dollars. 
I am in awe of how this sort of thing works; people telling people and something grows. My late husband Paul Williams was a big believer in community he was a part of the 1960s. As a musician I know what community is like and I can thank many artists and musicians who have helped me, encouraged me and supported me on this campaign. 
Legendary New York photographer David Godlis really stepped up to the plate offering the prints of Patti Smith and Lenny Kaye, making it one of my most popular rewards. X and The Blasters were gracious enough to let me open their shows this week and pass a basket around for their fans to pitch in on my campaign. A handful of Science Fiction authors either contributed or helped pass the word around Twitter about this Kickstarter: Gregory Benford, Jonathan Letham, David Brin, Spider Robinson and William Gibson. And the list goes on....
But most importantly there is the community of friends and fans I've met over the years playing music and making records. Some of you I have met in person and know as a dear friend, some of you I have seen out on the road, and some I know through the music. It is you all that have been the backbone of my support. 
I also thank my nearby friends that helped me put this thing together. If I start naming you right now, I will miss a bunch of names, because I'm high as a kite on not enough sleep and the Big-Wow of making my seemingly impossible goal. Some of you are named in the video credits. 
I thank you all. Everyone from the heart. And now my real job begins; making great music. I'm ecstatic about that. And I'm a good little budgeteer, by the way, so I will take good care of the money you have entrusted with me today. And I will give back to you, probably, maybe likely, my best album yet.
with deep appreciation, 
cindy lee berryhill
12/15/14 
8pm


Tuesday, December 9, 2014

5 Days Left On Kickstarter.. And A Brand New Song

Please if you've thought of donating and haven't yet,
now is the time.
Without your support this album won't happen 
I have 5 days to make my goal...
From the bottom of my heart, thanks!
https://www.kickstarter.com/projects/1138671896/new-studio-album-by-cindy-lee-berryhill/posts/1078494?ref=email

Wednesday, December 3, 2014

An Update And A New Song

https://www.kickstarter.com/projects/1138671896/new-studio-album-by-cindy-lee-berryhill/posts/1072097

That link will take you to my Kickstarter page which also features a brand new recording that only 5 people have heard before this. And they have their fingers poised over a red button of ....love?..destruction? Never mind.

At any rate, the December 15th goal date is looming ever closer. So if you haven't pledged something yet please do!

Here are some photos from the CLB/Cake show last Sunday night:
with Michael Jerome Moore on drums and David Schwartz on bass




The week before was equally as exciting and busy. Paul longtime friend David Hartwell came to town and brought with him an antiquarian book dealer from New York, Henry Wessells of James Cummins. They and sometimes I, went through and boxed up all of Paul's papers, books, reference material, posters. Here at our home and in our 2 storage lockers and sent it away to be catalogued and gone through with a fine tooth comb. Those two storage lockers were emptied and closed. No more $220 a month. Hallulujah!

But the best news is we are in the process now of finding a proper home whether a University, museum or public collection for Paul Williams archive. And I know he's happy about that. 
breakfast at the Pannikin ...before hitting the storage spaces

CLB, Henry Wessells, SF writer David Brin, David Hartwell
at the Phililp K Dick night at A Ship In The Woods gallery

Storage space!

Henry and all the boxes to be moved

waiting for the freight truck to arrive

and then a walk at very low tide

Encinitas Beach with Henry, Alex and David





Saturday, November 22, 2014

Kickstarter Fundraiser For My New Album


Last year some of you helped me raise funds for recording. That was the start of me working on my first album in over 7 years. Now it's time to get back in the studio and finish recording those new songs, master them, press them on CD,  and get them out into the daylight.

Can you donate something today to help me make my goal?

cindy lee kickstarter


Yes, you will receive the download, and for a little more the CD, and for a little more you can even have me record a message to you (happy birthday, pep talk, snippet of song, whatever). There are levels of donation and rewards.

More importantly, I am excited to bring you new music. I think its some of the best songs I've ever written. Help me make my goal of 16K, we are at $2,600. now ...we have until Dec 15th to make that goal. With your help we can do it! And I'll get that new music to you as soon as we get it on cd!

In hope and
appreciation,
cindy lee


Tuesday, November 11, 2014

NY Times Sunday Book Review Features Bob Odenkirk on Paul Williams Das Energi

Bob Odenkirk: By The Book

The actor and author of “A Load of Hooey” keeps a volume of “hippie philosophizing” on his shelves as a counterbalance to his “angry, skeptical, scowling mind.”


Which books might we be surprised to find on your shelves? 
A book of hippie philosophizing entitled “Das Energi,” by Paul Williams (not the singer-songwriter). It’s a counterbalance to my angry, skeptical, scowling mind, but you can only stand a page or two at a time — unless you’re a hippie, then you’d probably wolf the whole thing down.






Monday, November 3, 2014

Our Covered California Commercial

Cindy Lee and Alexander -Covered California

Above is a link to the directors cut. The version which has only me and Alexander in it. Working with the director Joe Murray, and the crew, was fun and easy. They actually showed up one day at our place here in Encinitas and spent the better part of a day following us around, asking questions, hanging with us on the beach. 

Since that day of filming, I've seen some of Joe's other work as a photographer, some amazing shots of Dave and Phil Alvin,
and some of his prior film footage at his website. Beautiful images with a deep sense of feeling, some kind of compassion coming through camera's eye. Some have the gift of the visual and Joe does, ...an extraordinary way of seeing the beauty in the mundane and commonplace.


And this one is the montage version that has been played a lot, over the past few months:
video

It was a real honor, and honestly quite a surprise, to be chosen to represent California's health care exchange, and be a part in some very small way, of ushering in this new era, of expanding health care for all citizens.
Joe Murray setting up a shot at our place

crew and Alexander goofing around on the beach
and this screen grab

Monday, October 27, 2014

This Morning I Awoke From A Dream, That Was The Second Of Two

This morning I awoke from a dream, that was the second of two.
The first of which was drawn out confused.
But the second
had Paul
and Lou.

He had just flown in from somewhere.
I wanted to spend time with him but I knew he was here on assignment.
We hugged and exchanged words and looked forward to the time we'd spend later.
But he was here specifically to interview and hang with, and get to know better, Lou Reed.

There were some handlers around Lou and I had to let my time with Paul go
so he could move into that inner circle they puttered about for a while then
left for the warehouse kingdom that Lou resided in.

Some time later, at a social event and a bar I caught back up with Paul.
We embraced and I noticed his energy was different. He seemed very far away.

"What's going on with you Paul?" I asked
But I knew already what he was going to say, before he mouthed the words.
It was something I'd thought a lot about.
How do you create more joy, bliss in your life.

"I need a lot of bliss in my life, really a lot. " he said.
A man with a blue dress on, long eyelashes and shimmering pink eye shadow walked by and
we were quiet for a few minutes, in contemplation.

"You want to go back in there with Lou don't you" I said.
He nodded in affirmation.

"I have been looking at the places I have joy in my life" I said to him
 "things like playing music, spending time with certain friends, writing songs,
children, creativity. "

He said again for emphasis, "I need a lot of bliss". 

I knew what he was referring to, on some level, and knew that meant our time
together was over. No one could administer that much continual good time feeling even
with a full supply of liquid bliss via IV.

I wished I had it again. That kind of bliss you have for just a little while, when
you are floating, soaring above all of mankind's woes with someone very special,  on a lovers pink cloud. It's a sand painting though, within a year the wind blows it away. If you are lucky, and
i have been, you are left with something wonderful and livable and sustainable underneath.
The floor boards of reality.

"I guess that means you are breaking up with me, we are breaking up" I concluded.
I looked at him angrily, took his chin in my hand and pulled it my direction. But his eyes
were looking another way. A far away place.

I felt lost and suddenly abandoned. He wasn't leaving me for anyone in particular
he was just leaving, and wherever that place was he was going, so was Lou.
Though he'd already apparently, been gone for awhile, It hadn't seemed permanent
until now.  I was losing a best friend, a companion.

At dreams end I'd come into acceptance, hugged him goodbye,  and left him there in that airport bar. An airport with planes to a far away land, places that I can't go, and no one can, still living.


When I awoke it occurred to me that Lou Reed passed away a year ago today and that Paul passed exactly 19 months ago today. God bless and enjoy that bliss dear ones.



Thursday, September 11, 2014

David Anderle, Paul Williams and Smile (an appreciation)

When I met Paul Williams (rock journalist, mastermind of Crawdaddy Magazine, man who was later to become my husband) at a Bob Dylan concert at the Pantages in Los Angeles, I said to him "funny meeting you right now, since I was just reading something of yours for the first time".  
"Was it Das Energi?" Paul asked. 
"No, it was the conversations you had with David Anderle about Brian Wilson's Smile album." 
Paul looked surprised and then we began talking about that conversation he'd had with Anderle back in 1967, when he was 18 and writing for his "startup" Crawdaddy Magazine. David Anderle was at that time, famously a best-friend, proponent, and music business advisor to Brian Wilson during the Smile recording sessions.

David Anderle and his haunting painting of his friend Brian Wilson.
David passed away last week

Excerpt of 1967 conversation taken from Brian Wilson and The Beach Boys/How Deep Is The Ocean:
Paul: Let's try to trace the history of Smile, from Dumb Angel, or even earlier; in fact why don't we start with the origins of Pet Sounds....
David: Fine. Okay. The origins of Pet Sounds...At one point I came into the Beach Boys' lives, or into Brian's life, right around the Beach Boys Today. 
Paul: March '65
David: Right, I came in through a relative of mine who was a friend of a few of the Beach Boys and then I was out again... And then I was brought up to Brian's house one night, a long time ago, and we just hung out for a while, and it was very groovy. I really liked Brian right away, I liked him because there was something there, that I had not seen in many people in my lifetime. And I was out again....
.....When I really got in with Brian was right around the time of the fourth, final "Good Vibrations". I heard it, and it knocked me out, and I said, uh oh, there's something happening here that is unbelievable. And then the next time I came up it was different..... And then I came up one evening, and Brian informed me that he had decided to totally scrap "Good Vibrations. " He was not going to put it out. The track was going to be sold to Warner Brothers to be put out as an r&b song, sung by a colored group. Brian has always had a feeling for r&b. So I went home talked to Danny and Danny (co owners of Brother Records, later members of the band America) said, well, let's work out a deal let's see if I can't record the song and have Brian produce it and finish it and the whole thing. I called Brian back the next day and I proposed, made a proposal to him, which I don't personally think caused him to decide to finish, but maybe he....it gave him a different perspective. Anyway, he went ahead and he finished it.

*     *     * 

Who would have thought, so many years later, in 1997, I, CLB, would be sitting in an office at A+M Records with both Paul Williams and David Anderle and like a fly on the wall, listening to them, lo, these 30 years later, talking again about Smile. (And at a time before Brian Wilson's remaking of the Smile album in 2004.) That conversation ended up in a chapter entitled Smile Is Done, from Paul's book How Deep Is The Ocean. 

Cindy: I have various (Smile)bootleg tapes, and um, each one has a slightly different order to it. I just like that, I like the fact that it's so, you know, it's all mixed up...and you just get into the sound of the music...But you have all these little pieces and they add up to like these great orchestral moments you know?
David: It's like a kaleidoscope. Jonathan (David's son) had a bunch of those same things, those little pieces (of Smile music) here and there and he would play them and I would sometimes go in and hang out with him and try to tell him little stories about it, if I remembered the night this ws cut and whatever. And I, it was great to hear them that way, 'cause that's the way we heard them with Brian. 
Cindy: Yeah. That's the way, maybe, they're supposed to be. 
David: Brian was continu-you know, he was continually shuffling... 
....And that's where it all ended for all of us, that's where it ended, it ended with that kind of moving around of music. And I think that moving around of music is the album, and I think it's the only album ever made that way. 
Paul: Yeah. 
David: And it's over. It's done. Brian is free. Brian can go out now and do something else. 
Paul: Absolutely!

David:  Well, it's your fault anyway, Paul, if you wouldn't have written those interviews, none of this would have happened. I could have had a much quieter life, believe me! I'd have no Steven Gaines (Beach Boys biographer) in my life for months...
Paul: Oh God Right....I think that because Brian is so sensitive, because he does feel so much, that just even intuitively to feel that kind of responsibility, you know, for touching so many people...My own personal belief is, the ways we deal with our power shape our lives. And when we're talking about Bob Dylan or Brian Wilson, we are talking about people whom I regard as having great power. A fact of life is that that power in us actually scares us. That's natural. And we have to come to terms with that somehow.

Saturday, August 2, 2014

Abstractedly Constructs Or Something Else Altogether

When you don't feel well, your life slows down and you find a proverbial bush to hide beneath for a little while, so that you won't be found ( or called or texted ). And in a way it's like your personal electrical system has gone off the grid and your water source comes from a place much closer to home.

I had friends that lived liked this, off the electrical grid, miles outside of town in Taos, NM. I stayed with them a time or two just to get a whiff of what that life must be like. It takes a lot of time for one thing. And it takes some preparation.

And so I forage for food at the grocery, things that will last most of the week. And bring home multiple DVD's from the library. It's no fun being sick and I'm on my 11th day down with a virus that's caused by Chicken Pox, aka Shingles. So I'm tired, so tired, itchy and achey.

But here's the interesting thing that came out of being sick; the altered state of consciousness. There were some very psilocybin moments going on and I wasn't taking in far-fetched meds, simply an anti-viral and Advil.

I had a nice connection with the orange tree outside our door. Yeah I've noticed it before, but I'd never really thought about how it's a living being, living it's life right alongside ours for the past 20 years.

And this; the nat-like bugs that are so attracted to the bathroom, one of them flew around me obnoxiously, I was swatting the air trying to push it away, be gone! Then I realized this; I'm here paying rent on a place, working a job to pay the rent, but this bug is flying around in the air here, in this apartment, rent free. Everywhere the bug goes, its free. The food is free. The water is free. And then I thought, hmmm, there used to be a time like that for humans, you know when all was free. Like how it is when you see guys fishing off the pier and they make a little catch and eat it that night. Free. Sure there's a cost to freedom, maybe it's anarchy-the biggest fish wins. But I started to realize, all the things you're brought up to believe in like; marriage, college a good job, are all in cahoots to this civilization thing called Non-freedom.

So that right there, is what a viral infection can get you....


        *     *     *

Each day now I am a little stronger, feeling better. And it's a good thing because next weekend I go in the studio to record 2 songs. Two songs some of you have heard maybe in the last year; An Affair of the Heart and Somebody's Angel.

Cellist Renata Bratt and I have been collaborating on the string parts via email and phone and I think we've come up with some really good stuff. I'm excited!


        *     *     *

Meanwhiles...


...this photo of Paul came in the mail via our friend Gabriel Voiles yesterday. Paul and I moved to Encinitas in 1994 and he befriended some of the young musicians in the area. One of them was Denver, who was 19 or 20 and in a band called Powerdresser. Denver was about to move to Chicago to hang with some new music friends there, he visited Paul the day before he left. We saw Denver, with his hoodie smiling at us through the window as we sat eating at our local taco shop. That night Denver passed away. Things weren't entirely clear; he had taken acid, and gone for a swim, perhaps had a fallen off the sea-bluff. It was very hard for Paul, he'd felt a real connection with Denver, and it was quite reminiscent of a loss he'd had when he was 19 and his friend Don McNeil (who was a young writer for the Village Voice) died while swimming in a lake and on acid. 

Nonetheless, this is a beautiful photo of Paul. Perhaps it was taken by Denver.

Here's Paul's SD READER story on Powerdresser and that music scene 


Monday, July 21, 2014

Gravity Falls Live at Alan Bershsaw's


Like water fallen' off a mountain
the time-stream stalls
I look into your eyes and know
Gravity Falls...

Wednesday, July 9, 2014

Paul Williams: Father of Rock Journalism SXSW 2014


A few friends have nudged me over the past 3 months, since the music conference to post some photos from the panel on my late husband Paul Williams. Truth is, with all the organizing of, getting the panel ready to go, I'd forgotten to ask someone to take photos. Luckily Anthony Butler and Raul Sandelin were shooting footage for an upcoming independent film they're making about rock journalism, called THE ROCK BARDS. My friend Jon Kanis was sent to SXSW to film our panel and grab some individual journalists interviews and other stuff. So thank you Jon, Raul and Tony for the stills!


I had uploaded about 50 photos of Paul through the years, covers of CRAWDADDY MAGAZINE, and a few of his books to show on Power Point behind the talk. I was thinking that morning; shit that's way too much, what am I thinking, a slide every 2 minutes? But as it turned out my over preparation was perfect. Whenever someone would talk about Paul in a certain year I had a slide. When David Fricke referred to Paul's book Outlaw Blues, I had a slide. When Ed Ward talked about the NYC CRAWDADDY! office, i had a slide. 



Ed had great stories about meeting Paul in 1966; a kid standing in front of a speaker jamming out to the band on the stage and handing out free CRAWDADDY'S like candy to the kids. And Paul's youthfully-full of himself -attitude when giving Ed a copy and asking him to write. Ed was full of cool stories of that time. I had hoped he would tell the tale, which is in print in the book A History of Rolling Stone, where he got fed up working for Paul and wrote a letter of resignation, put it on Pauls desk with a knife through it. Nice flare Ed. 

Through a series of friends I came to know and invite Paula Mejia to be a part of the panel and she was great. I was hoping there might be someone out there, under 30, in the current world of rock writing that dug Paul's writings, and might feel influenced by it, and she did. 


Earlier on, I started things off with a quick read, a quote from Paul's very good friend Pat Thomas, a summation of who Paul was as a writer, and a friend. Pat's lovingly written piece was originally featured on NPR after Paul's passing March 2013. 


I have been a fan of Ann's writings and her outspoken-ness on feminist issues for many years. It was an honor to have her speak about Paul's writings and join in on the panel discussions. Plus I loved having another mother in the group...


Ed telling that knife story with some flare....


At the SXSW panel David spoke of Paul's influence on his own writing and about how much he loved Outlaw Blues. I met David Fricke at a Patti Smith concert in 1995, in San Diego. Paul and I were guests backstage and afterwards we went out to eat with David. It was always a pleasure to sit back and listen to what Paul and another practicing rock writer would have to say about the current state of art. 

In 2008 I made a trip to New York and met with my friend David Bither and told him how Paul's health was deteriorating and we talked of a plan, of getting a group of Paul friends together to help create an awareness of Paul's situation  (i.e. needing funds to pay for health care). We rallied a super group of 7 friends including himself; Lenny Kaye, Jon Landau, Jonathan Lethem, Johan Kugelberg, Will Amato, and David Fricke. They met several times and devised a plan which jump started a fund-raiser that helped me get Paul special care and into a nursing home in our town. 

I will forever be grateful to Davids support and soothing words, at a time when Paul, and I, really needed it. 






The panel was an hour and we only had enough time for a couple of questions. Jim Fouratt chimed right in, from the crowd, and talked about the Be In he and Paul organized at New Yorks Central Park in 1967. 
Someone asked about Paul's spiritual side, and the panel got quiet, finally David Fricke fobbed that ball over into my court. Actually though not the place to talk about it at length, Paul's spiritual practices and pursuits over the years are indeed pretty interesting and did have an affect on his writings. I think I mentioned his belief in tithing, in which he would subscribe and pay extra to his favorite magazine The Sun, and his Buddhist studies. He and I went on several Thich Nhat Hahn retreats. I think the thing he dug most about Hahn was his anti war stance, and that Martin Luther King nominated him for the Nobel Peace Prize back in 1964. 


Thanks to everyone that participated and came to the Paul Williams panel this year. Thanks to SXSW for hosting it. It was a true pleasure to see Paul's good influence living on...


Saturday, July 5, 2014

Horsepower: Live at Alan Bershaw's


This was recorded by Alan and his NYC editing, production friend August of 2013 at a house concert in New Brittain, CT. I'm pretty sure they had two cameras going on, but I'm not sure now, my main job was try to remember the chords and to not fall in the pool, which was a few feet to my right. 

At one point a big odd bug flew down by my fingers while I played guitar and hovered for a minute or two. I think it was possibly a special visitation from a dear friend.

Sunday, June 22, 2014

Love In The Light Of Day

https://music.yahoo.com/news/glen-campbells-wife-responds-stepdaughters-angry-plea-135951379-rolling-stone.html

So dang sad that family can become so separated at a time like this, just when he needs them to come together and love and rally for him.

I am still so deeply grateful to my husband Paul Williams family; his ex wives, and his adult children, and dear friends for being so incredibly supportive of what we had to go through with Paul's care in and out of the nursing home, and ultimately his passing last year. Everyone was gracious, generous, compassionate, and dignified in a time of heart break.

Paul was so happy to see us all coming together, being there for him. I wonder, does it have something to do with the way he lived his life? 

Paul was so fiercely honest, he 
couldn't keep secrets, really he couldn't. He always loved, in his own way all these people in his life. That love was enduring and it was a thing I loved, honored, and respected about him. Nothing and no one was exiled from his life. Not perfect, to be sure, but a form of loving that was inclusive and out in the light of day.

Paul's last few weeks; with our son Alexander, me, first wife Sachiko and her partner

Thursday, June 12, 2014

One More Loop Around The Sun

Thanks to my bandmate Renata Bratt for this photo from our breakfast in Austin a few months ago. 
What am I doing on my birthday?
Well, Dave Alvin started it out wonderfully with a text and invite to see him and brother Phil last night. Great show and new album.
Today,
I'm going to see my all time favorite movie 2001: A Space Odyssey and get the full mind expanding effect of todays full moon. And the actor DAVE will be in attendance. 
I will relay impressions and results as I return to Earths atmosphere. 

Sunday, June 8, 2014

Present Moment

 Alexander and I walking the San Elijo Lagoon trails today. I still feel Paul's presence here, his enjoyment of life, and of this place. As Thich Nhat Hahn once said (and I paraphrase) "You are a wave in the ocean. At some point the wave stops being a wave, it falls and breaks, but it is still the ocean. "

And since the last post had photos of us from so long ago, 2006/7...here we are today

Thursday, May 29, 2014

SEGUEING FROM SPOUSE TO CAREGIVER (no fun)

The grouchy face of an overworked, overtired caregiver
Paul and I at the beautiful San Elijo Lagoon 2007 (photo by 5 year old Alexander)

The following is another piece from my talk at the California Brain Injury Assoc. conference

From Spouse to Saint=No Fun Zone:
The rest of this story is about me landing on the ground....taking things one day at a time, becoming a responsible adult that could work and make a living, take care of Paul and our young son and find some time for myself. It's was a daunting enterprise.

I found friends to be extremely helpful. As things with Paul worsened some friends went away and some came closer. In retrospect I wish I'd gotten myself into some kind of therapy or self help group earlier. Eventually I went back to a 12 Step Program I'd been in years before, Alanon, which became very helpful. I needed a place to put my anger and sadness. I felt like I had to 'buck up' suck it up, and take it all on, and be a warrior for my family.

Eventually I found a few helpful resources. One was the Southern Caregiver's Resource Center in San Diego. I arranged a meeting and told the social worker my story. We talked about what she called Caregiver's Burnout. She made me feel okay about what all I'd done so far by saying "Some caregiver's in your position would have given up a while ago, and some could go longer. It all depends on what you can handle and only you will know your limits". She helped me get onto a temporary program called Caregiver's Respite Time and the State of California paid for Paul to go into a very nice and nearby Alzheimer's care facility for 12 days. It was a lovely place, they sewed his name into every shirt and pair of trousers he came in with. And it was heaven for me, and Alexander to be free to drive out of town, or just hang out somewhere besides home for hours at a time.

Avoiding Caregivers Burnout:
1. Make time for yourself (steal it wherever, whenever you can)
2. Honor your feelings and make time for them
3. Know when you are reaching your caregiving limits
4. HALT: don't let yourself get too- hungry, angry, lonely, tired
  
When It's Time To Ask For Help

By 2009 I could no longer take care of Paul. Our son Alexander and I could rarely get away and Paul was not easy to take out of the home. It was dangerous leaving him alone, for fear he might start a fire.

He did indeed start an oven fire when we were away for a day even with our neighbor looking in on him every hour, Paul put a pan in the oven with oil in it, the apartment alarms went off and when we got home our neighbor was spooning oil out of the bottom of the oven.

I rallied a little money from Paul's family and used some savings and hired a full time "baby" sitter to stay with Paul while I was at work. It was expensive. I didn't have enough, nor make enough money to keep this up and I couldn't handle this for long...

San Elijo Lagoon w Paul and Alexander 2007

*      *      *

And a memorial thank you to this kind hearted friend from our church who watched Paul and Alexander on numerous occasions, just to give me a little sanity break. Bless you dear friend, Heidi Salomone.

Monday, May 26, 2014

THEY DIDN'T TELL ME THINGS COULD GET WORSE

The following is a selection from the talk I gave at the conference for the Calif. Brain Injury Association May 15th

Paul receiving physical therapy 2 months after his brain injury

We had a baby in 2001, Paul turned in his latest book on the work of Bob Dylan and began writing on a new book ... Around this time he began to have anxiety attacks and sometimes he felt the room spinning in a vertigo kind of way. He began to walk slower and sometimes he would talk a little bit slower. It was not very noticeable at first. I thought, it could be he feels like me, I'm tired all the time from taking care of our new baby.

Some folks that acquire a brain injury or multiple concussions can later begin to show signs of a new problem. For Paul, just as he was improving on all fronts he began to have severe anxiety attacks and off days. Sometimes he would say to me "my brain feels really fuzzy today" or "I'll drink coffee to get out of this fuzzy-brain feeling". In retrospect, I believe, it was the beginning of early onset of dementia due to his traumatic brain injury.

Things have changed much now that multiple football players have donated their injured brains to science and there has been a paradigm shift in understanding, it's common knowledge now, that tbi can sometimes lead to dementia or Parkinson's. Just last year, 2013, while at a talk by a scientist, Yimin Zou, on brain and spinal cord research I got my answer as to what happened to Paul’s brain: The initial break in the neurotransmitter highways is called a traumatic brain injury, but the subsequent retraction of the microfibers called Axons, worsens the ability of electrical impulses to get around the brain.

But in 2004, we, the doctors and I, didn't know what was going on with Paul.

Paul tried numerous anti-depressants, some drug for Parkinson's, some other drugs like Neuronton that are supposed to stimulate the brain. Nothing helped. As time went by, over a period of about 2 years, he became less steady on his feet, talked much less, couldn't remember where we had stopped reading in the book we were reading aloud together. But the biggest difference in him was he began to write less and his office became strewn with papers and unfinished bits of things and with many unopened letters and unpaid bills....


GETTING AHOLD OF THE FINANCES: 

I am grateful that a friend had told me years earlier that if I was going to get Paul on social security disability that I would need an attorney. He was right, even the attorney's request was turned down by social security the first time through. The next time he was accepted.

Another good thing that worked in our favor was we’d filed for bankruptcy before Paul’s dementia set in. I’m relatively certain now that Paul knew something was not right with him back in 2002 and he pushed me on the idea of us going into bankruptcy. He had a huge debt, nearly $50,000. I had been unaware of. As it turned out, many of the years after the brain injury he had not been making as much money as he had before, and so began using the credit card for basic living expenses. I'm thankful this problem came to light while he could still fill out forms and make decisions. It was, I believe now, a gift from Paul while he still thinking clearly.

I was not one of those women that naturally takes ahold of the family budget and financial responsibilities, I'm a musician after all, so when it became clear that Paul was not capable of paying and keeping track of our bills, I lurched out of denial kicking and screaming. Fortunately Paul had been an extremely organized record keeper up until the point where he no longer could. Now most our bills and his writings and mail were scattered on the office floor.
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I wish I had seen the dementia coming so I could have cut off the credit cards earlier, the PayPal accounts, limited his time on the internet, because he was signing up for things on line that cost thousands of dollars or getting scammed in all numbers of ways. Including by telephone. I had to undo a number of these and it wasn’t easy.

Coming out of denial, that something was going wrong with Paul's brain, was hard for me. But bigger problems started to arise. He had a car accident with our 2 year old on board, rear ending another vehicle that was stopped at a red light, Paul’s fault. And then a month later he bit our 2 year olds arm trying to get the boy to stop interrupting him while working on the taxes.


I hadn't been prepared for this, no one told me that things could go the other way, that things could get worse, the rehab, the doctors, the nurses had said things would just keep improving...