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...
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.
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
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
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.
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
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 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
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...
When I arrived in downtown LA yesterday it was 106 degrees. Paula came in an hour later around 2pm and her car told her 110. It was crazy hot. Meanwhile, I wasn't sure what traffic would be like heading out of San Diego; the day before part of Fwy 5 had been closed because of the Tomahawk Fire at Camp Pendelton. So I left a lot of time for possible fire mishaps.
It was weird coming in from San Diego, where we've been living the apocalypse, checking Twitter compulsively for fire updates, and just a little bit north, aside from hot weather, every thing was la-dee-dah, normal.
We played some songs
I told my story
And my longtime pal Dr Paula Luber gave a medical perspective and some tips for being proactive with brain injury health care.
During the final Q+A an audience member asked if Pauls family had a DNA propensity for dementia and if that was why after initially recovering from the brain injury, rather miraculously, he fell into dementia.
The truth is that Paul, like many football players that have donated their brains to science, acquired his dementia in his mid 50s because of the TBI. Just as those football players that had multiple concussions had. Paul's mother lived well into her 80s and only started to show dementia in her last year. Paul's father began to show Alzheimers in his mid 80s, which is relatively normal. Paul was 54 when it became obvious something was very wrong and eventually he was medically deemed: Early Onset of Demetia Due to A Brain Injury.
It's very cathartic being able to share my story. While reading it through yesterday, I thought; how the hell did I live through this? Many of the folks in the audience were caregivers and I could pretty much guess what they're going through. One woman said to me "Friends tell you, 'you take care of yourself', and they wag that finger. Well how am I supposed to do that when my husband needs full time care?"
One of the stories I told was how I let myself get so beat down by the caregiving and the worry and that at it's most climactic, when I decided it was time to find a nursing home for Paul, I would cry myself to sleep. I'd think, it's 10pm now, I have to get my son up for school at 7am. I have about 45 minutes to cry right now. Then I'd shut it off and make myself go to sleep. After a week of that it backfired. I was awoken at 4am by my heart, which was beating over 200 beats per minute. I was having an SVT: Supraventricular Tachiacardia. I called 911 and had to go to the hospital. I thought I was gonna die. Turned out SVT's are relatively benign, there were things I could do to bring my heart rate down (like plunge my face in a bowl of water and ice, shocking the heart back into a normal rate). I could live with this.
The point is, I'd reached my nadir, the lowest point on my caregiving trajectory and it was time to turn over the reins to caregiving professionals and find away back into self care; like exercise, time alone, creativity,
It was a real honor being able to talk to the California Brain Injury Assoc. conference, to a group of men and women that have been down some similar paths to my own story. Though mine is a cautionary tale, I hope in some small way I was of help to those still living with their own beloved stranger.
This Thursday I will be giving a talk, in Los Angeles, on my experience with a brain injured spouse and all things related, plus a little music. I'm excited and a little nervous. Fortunately my good friend Paula will accompany me with some glockenspiel and some words on brain injury from a medical perspective 4th Annual Statewide Conference Acquired Traumtic Brain Injury Resources and Pathway To Brain Injury Recovery Thursday May 15th 2014 7:30am-5:30PM The California Endowment Center 1000 N. Alameda St. Los Angeles, CA 90012
3:50-5PM SESSION A – CABRILLO ROOM Love, Brain Injury & Early-Onset Dementia: A Caregivers Tale
Cindy Lee Berryhill, Caregiver, Singer-Songwriter/Performer & Paula Luber, M.D.
On behalf of the Brain Injury Association of California (BIACAL), you are invited to attend the 4th Annual Statewide Conference on ATBI: Resources & Pathways to Brain Injury Recovery, Thursday, May 15th at the California Endowment Center in Los Angeles.
This conference is designed for persons with brain injury, caregivers, family members, educators and medical professionals.