Love, Brain Injury & Early-Onset Dementia: A Caregivers Tale

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.}  

_{Calif BI Assoc Conference}

Mother Marilyn

We were lying there on a futon bed, with a red blanket, when I asked her, "What do you do if there is a man in your life that has you on a pedestal or anyways, they don't see who you really are?" She moved her pale naked body into a new position, a position to talk from. "Well, you just ignore that, and you go on."

Ignore it? I thought about that. But, I argued with myself, the guy thinks I'm so much more than I really am.  She of all people should understand this. Maybe no woman was idolized as much as she, since the 1950s forward. And the truth is we, she and I, didn't really have much in common, our blond hair, and something else...

"So, you're saying, ignore it, ...even while he is going overboard with being of service. I mean, this guy, by the way he looks like John Watson on the show Sherlock...come to think of it he acts like that too. You know the way John is pretty much in love with Sherlock and will do any and every thing for him?"

"Some men operate that way" she said cooly. "Come here put your head on my chest" We were under the red softness of blanket together now, bodies touching, I laid my head down on her bare breast.

"Its nice, like pillows" I said, still considering the first half of the dream with the Watson-like fellow. "There, there" she said and patted my head. She was so wonderfully motherly. Like the mother I'd lost so long ago. The blond hair, the softness, the gentle way of speaking. But Marilyn Monroe had had her loss of a mother as well. That was the only real thing we had in common, but it was everything. We that lost a parent as a child limp through life with an invisible crutch, a crutch called 'show-biz'. It' all about the presentation. Appearing okay.

Being held by her, with such gentleness, I allowed myself to be a child again and to be nourished by loving touch.  We had both had terrible loses in our youth. Some kids do, some don't. I met a man a week ago, he came up to me after a show and said "you know I lost my father when I was 15, I just....It was so ..." he couldn't finish the sentence, his breath smelled of many beers. "I understand, it's the loss that never goes away". "That's it" he said and wiped an eye.

We all have losses eventually, we kids just got there early. I have a song that goes:
One thing I figured out a long time ago, when the hurtin' starts young it looks like everyone you'll know. 

I awoke from the dream feeling comforted. I think it's our job in life, to comfort our 8 year old that's still afraid of the big people world, the child inside of us. And it's also our place to nurture our own adult cindy lee, so we can be compassionate and open and empathetic to our little cindy lee, and of course, to her friends.

Happy May Day to you my friends...

Cindy Lee Berryhill and the Garage Orchestra: Photos By Jerry Manning

Paula Luber on vibes, Cindy Lee, Randy Hoffman on wall heater (w/Mark Jackson assisting), and David Schwartz on bass and creative fuzz concoctions. 

We had a great time playing together, first time since SXSW. An added bonus was having the great Danlee Mitchell in the audience. Danlee worked with avante garde composer, Harry Partch for many years, both of which were Randy's mentors. After the show Danlee shook my hand and said "powerful performance". That about did me in. 

It was another fine year at the Adams Ave Unplugged Music Festival, thanks to Blind Lady's Ale House for taking care of us. And thanks to Harpo Mark Delguidice for the invitation and fabulous sound.

The day before, Saturday, I played a solo set at the fest, w/ songs and lots of stories. Later in the day I  had the pleasure of seeing my pal Peter Case's set.. and Alexander I had conversation and dinner with him afterwards.

Thank you to the Adams Ave folks, Liz and Kent from The SD Troubadour and George Varga at the the Union Tribune...for making it another great event.

David Schwartz came down from Santa Monica to play with us, setting aside his normal task of writing fab music for fab TV shows...

Paula Luber; the doc on vibraphone

Adams Ave. Unplugged Music Festival This Weekend

This coming Saturday and Sunday you can catch me at these shows at the annual Unplugged Fest at Adam's Ave in San Diego...

Saturday 4/26  2-3pm Kensington Cafe (solo)
Sunday 4/27  4-5pm  Blind Lady Ale House Oudoor Stage
(w/band; David Schwarz on bass, Randy Hoffman on drums and glockenspiel, Paula Luber on vibes)

Schedules here:
http://www.adamsavenuebusiness.com/unplugged-schedule-2013.html

And a nice little write up from the Union Tribune for me, and fellow festival performer, Peter Case:
http://www.utsandiego.com/news/2014/apr/20/likely-highlights-at-adams-avenue-unplugged/

I Had A Dream

I had a dream; 
I was shopping with some beautiful girlfriends for dresses. We were looking at very shiny happy sparkly dresses, quite mod and colorful really. And a few hats, with feathers, fit for a princess. 

Then amidst all these happy things I remembered Paul and that he was dead and how much I missed him and how I wished he were still here. I went barreling down a hallway sobbing...fearing the loss of more loved ones and friends. 

How could I go on? Go forward in the face of that inevitable loss? I cried some more, than went back to my girlfriends who were still looking at fun, happy dresses. Somehow, I knew, even with the sadness, I would face the loss and go forward. Even in the presence of dichotomy; happy dress and smiling girlfriends and brutal loss. 

I would always be marked in this way, but in time we all are. And we all move forward, touching the nice things still.

More Austin with Friends...

(photo Sharyl Holtzman)

The panel on Paul Williams and Crawdaddy, went great and it was Wednesday at noon and my band show was that night, so Thursday was a sorta day off. Cellist Renata Bratt and I met up with Alejandro Escovedo and the Lou Reed Tribute All Star Band at the Gibson Guitar Showroom and ran through our song, Femme Fatale.  It was cool seeing my pal Lenny Kaye, who was playing in the band, in this other context; outside of New York and outside of the long arm of the Patti Smith world. 

(photo John Doe)

That night, after rehearsal we went into South Austin to catch a few bands and ran into friends having dinner; John Doe and Chrissy and Cindy Wasserman and Patrick Dennis. We had planned to see X after our gig Wednesday night but our ring-leader, Paula Luber (and the van), decided to lay low at the hotel after load out. So instead of going to the Mohawk we had dinner on 6th and mosied around Stubbs never making it over to the X show. Good thing. We would have been in the line of people that were plowed into by a random drunk guy. Very tragic scene. Fortunately we were too tired after our own gig to make it over.

(photo Todd V Wolfson)

The night of the Lou Reed Tribute show at the Paramount Theater there were about 10 amazing photographers running around with cameras. Todd Wolfson and Richard Kerris came back to the "women's locker room" backstage and picked up a few shots of us before the whole thing began. 

(photo by Louise Goffin)

This one was taken right before I went up and played Femme Fatale, waiting my turn as Cheetah Chrome plays his tune. Louise Goffin, one great songwriter from a family of great songwriters, snapped this one. 

(Todd V Wolfson)

Me and Louise backstage pre show. With Renata's cello case.

(Todd V Wolfson)

Alejandro checks up on us women folk. With Rosie Flores and her manager, me in the back, Louise Goffin, Roggie Baer, Paula Luber, and Renata Bratt

(photo Todd V Wolfson)

Suzanne Vega sang Walk on the Wild Side with Alejandro, Richard Barone and I doing backup vocals and Renata playing cello.

Richard Barone has a marvelous version of All Tomorrows Parties which you can find and buy on line and a super cool video of original Warhol footage to go with. Here I'm singing backup while Nico hovers over us and the band. 

(photo Todd V Wolfson)

Backstage we were all tromping around tryin' to figure out who was on next, what was goin' on. Here is Sharon Needles who inspired me to put on a little extra makeup...

(photo Todd V Wolfson)

The big finale with everyone chiming in on Lou Reed's Rock And Roll. It was the first song of his I heard, back in the mid 80s when a friend made me a Velvet Underground mixtape. Shortly after hearing it I was impelled to move to NewYork City. Standing next to Sharon Needles...

(photo Todd V Wolfson)

Saturday noon Paula Luber and I caught some brunch and music at Alejandro's SXSW tradition at Maria's Taco's. Here we are with Jan Stabile and Mike Thompson, Alejandro and Richard. 

Then it's time to hit the road. Man, I woulda liked to have stayed another day or two, I feel like I made a bunch of new friends and saw lots of old ones. It was hard to leave. But both Paula and I had work to get back to and three full days of driving to do. 

It's kinda crazy to come out of a scene full of friends and fabulous musicians and then be in these remote places a few hours later. About 15 miles between cell towers. Time to get the mind unwired, de-wifi'd, and tuned in to the rhythm of the land. 

(photo clb)

Have you ever seen, or heard of those 2 thousand year old ceramic bowls and cups where the ancient potter used a wheel and spun it round to make them the way they are...only to find out that some of those old potters cups recorded the sounds of the people making them. Long ago conversations happening. Scientists have tuned in to the grooves made by those ancient potters and found that accidental recordings were made. I've wondered if that could be the case with the grooves in the highway. Ever noticed how the highway sings? Sometimes you can hear a song singing in those asphalt grooves, pulling you forward. 

Cindy Lee Berryhill Photos by Richard Kerris

Photos from Richard Kerris at the Official Sxsw Lou Reed Tribute

with Rosie Flores, Lenny Kaye, show organizer Richard Barone, Cindy Lee Berryhill, 

and Clem Burke

Backstage, before the show

Thank You Teacher; A Remembrance of Rick Saxton

(photo Greg Allen 1987)

You taught me how to sing harmony. How to find the root, the third, the fifth. How to find the ninth tone in a guitar chord. 

Crazy maybe; you willingly went along as tour manager of my bands first tour, in the dead of winter, in 1988. You and Waygone Rex got into a fight, almost really bad, back stage in a lousy club in Birmingham Alabama, the last gig of the tour. You said "that's it" you were going to take a Greyhound bus home, you went back to the hotel. Instead you got up the next morning took the terrible $1500 van in for an oil change and we drove back to Southern California our friendships still in tact. 

When I was ready to leave home, leave my parents, you were a safe place to learn how to become a un-child. Maybe not an adult just yet, but not a child. I paid rent, got my first job and listened to your extensive record collection, on shelves made of boards and cement blocks

You were my friend and advisor when I needed to talk about guys and figure out where I fit in. One time you said, "what's with you?" I said I had a big wall (I was 22) and that if anyone wanted to get close they'd have to knock it down. You said, "okay I'm knocking it down". You really knew how to be my friend.

Our friend David Ruderman reminded me the other day, of the time we went with you in your old 1940s Ford truck, tooling down the freeway, on our way to a little gig at a steakhouse and the entire front wheel came off the axel. Thump! And then it, the wheel, rolling on ahead of us, passing in front of us, while we screeched and sparked to a halt, safely somehow, miraculously,  on the shoulder of the freeway.  

When I got married to Paul, you were our photographer. When our little 4 year old son had a birthday you were the train engineer that told tall tales of steam-engines and sang songs of railroad yards. 

Everyone (Elizabeth Hummel, Veronica Boyer, Bart Mendoza) looking cool for your shutter snap, at the wedding..

Rick, the last time I saw you, in 2005 or 6, I was pretty much a mess with everything going on with Paul's health, as you remember he was still living at home. And raising a young child on my own. I wasn't much a friend to you and your sister these past 12 years. But I've always got you here, in my heart, and in my harmony, and those photographic memories. May your life now as a free spirit of energy take you to all the places you always wanted to go, the Holland Tunnel, Route 66, and beyond. 

Rick Saxton passed away 2 weeks ago. 

Garage Orchestra @ Sxsw Esther's Follies

A Great review of our show at SXSW from the syndicated NPR show Sound Opinions!...@ 22:24
http://www.soundopinions.org/show/434#

*      *      *

I just arrived home from Austin Tx on Monday and it was such a joyful reunion with my son Alexander, and the family, our good friends the Hahm's, that he stayed with those 10 days. In New Mexico I picked up trinkets for their son and mine, bullwhips, and a dream catcher for their 9 year old daughter. 
A delight to be back home with family and friends. 

For the 10 days I was gone, everyone here suddenly discovered Pharrell Williams Happy. So not only is my son and the Hahm's singing it but the next day at work several students want to learn it on guitar. So i put it on the player just now, listen, catch the wave, irresistible even in it's nonsensical nebulosity. You can't not feel happy in the listening. It reminds me of some of the music I liked best as a kid, in the Charlie Brown 1973 Thanksgiving special a riff between Snoopy and Woodstock, a song called Little Birdie. Listen to them both and tell me you don't hear just a little bit of that too. I'm a total sucker for that 70s style pop-soul.

*      *      *

Last Wednesday was our official show at SXSW and we lucked out and got one of the best rooms in town. It's a comedy club part of the time and it's got elevated seats, (yes! one of the few venues that lets you sit down and watch a show) that lead down to the thoroughly colorful stage, with props and multi colored lights. Perfect for the Garage Orchestra sound. The sound was great and lights were very creative. We had a good crowd and folks dug the sounds. 

Renata Bratt on cello, Randy Hoffman on percussion and wall heater cover

Paula Luber on vibraphone. She and I drove a minivan out to Texas with most of our stuff. Three days there, three days back. Listening to lectures recorded from a medical convention (actually very interesting stuff!)

David Schwartz on bass and fuzz tones. David and Jody Schwartz got into Austin Monday night and we had a lovely dinner and hang with them and their LA drummer friend Michael Jerome Moore, a few days before the crazy began. 

By Wednesday the town was full of road blocks and spring breakers and mini-vans like ours. We were fortunate to have a show on the early side, in front of still sober music lovers. Shows like this with my friends; it's pure joy. Feeling fortunate and grateful. Happy. 

*      *      *

Is it happy I feel just now listening as the 127, 171, 934th listener to the song on Youtube? It was , something. Some kind of feeling....but it came out as a huge burst of tears. That joy for living and the great sadness for those that have departed, leaving us to these little everyday moments of oddly connected bliss.

SXSW Lou Reed Tribute ...Photos by Todd Wolfson

An atonal 4 bars to start. A nod to Lou Reeds Metal Machine Music

With cellist Renata Bratt and violinist Susan Voelz, Rosie Flores and show organizer Richard Barone singing harmonies on Femme Fatale

That's Lenny Kaye behind us on guitar, Clem Burke (from Blondie) on drums, Tony Shanahan (ala Patti Smith) on bass, and Ivan Julian (from the Voidoids) unseen on guitar on my far right

I took a guitar solo.

As for that 4 bar dissonant intro; the plan was to have a percussionist play the 6 foot tall wall heater cover we brought to Sxsw (and used in our show at Esther's Follies), however everyone we asked and said yes to playing the metallic wonder suddenly got a paying gig. We brought it to the Paramount Theater that night just in case a miracle percussionist would turn up. Alas, it was not to be. Even Clem Burke, got wild eyed and bewildered when I talked of starting the song with the 4 bars of banging metal. 

Renata and I set the metal heater cover aside in the back of the theater and played our part in the show. After it was over I noticed it was gone. Someone had taken it out back to the dumpster. We found it luckily, and it is safely home now... 

A rockin' ending, ...making way for BP Fallon and the Strypes up next on Vicious

And backstage...

photos by Todd Wolfson