Clouds of
Patchouli oil. Marijuana vapors. Garlic fries. Plastic hand-buckets of icy
beer. Disabled adults in wheelchairs flying around faster than bicycles. Tiny
men that ended at the waist strapped into massive electric wheelchairs controlled
with straws or joysticks or an arc-shaped leatherette headrest that housed the
steering and acceleration. A stage covered in rock stars, music engineers, guitar
handlers, pop stars, folk singers, a legendary producer and severely disabled
children in wheelchairs. Children without speech but with wide ranging vocal
pyrotechnics. Shrieks and laughter. Grunting. Inquisitive moans. Hands and arms
twisted with spasticity and athetosis. Draped in drool scarves and medical
equipment hung out of sight and sometimes delivering liquid feedings straight
to a gastrostomy tube. Portable oxygen tanks just in case. Medical tubing
snaked into backpacks hanging from the hardware of the child’s seat stuffed
with diapers and cans of formula. Medications for seizures. Parents and
children who survived catastrophic diagnoses. Brain damage from birth injuries,
in-utero infections, encephalitis, genetic tricks, brain malformations and
accidents. Joyful students and former students. Accompanied by parents or
caregivers, friends and siblings. Sharing the stage with musician artists in
front of 20,000 fans. Neil and Pegi Young at the center. The annual Bridge School
Benefit concert weekend at Shoreline Amphitheatre in the San Francisco Bay Area.
Pegi Young
started the school about 30 years ago with another parent. Both had sons with
significant physical disabilities and were unable to speak. Pegi was married to
Neil Young and so began the annual Bay Area ritual of the Bridge School Benefit
concert.
I saw a review
of this concert in 1997 in a discarded section of the New York Times at
Einstein Bros bagel shop across the street from United Cerebral Palsy where I
brought Lueza to preschool. My morning ritual. Travel from Upper West Side of
Manhattan to east 23rd street. Try not to think about killing
myself. Calm down Lu in her classroom and cross 23rd street to
medicate myself with strong coffee and buttery toasted poppy bagel. And there’s
a review about a Neil Young concert to benefit a school for disabled children. And
they’re describing not only how great the concert was but the stage was covered
with students. They were part of the concert stage. Children in wheelchairs
with computer devices attached for communication. Speechless children learning
to ‘speak’ via machine. They were describing kids like Lueza.
We moved to
California about 35 months later. Lu started Bridge School in late August of
2000 and 2 months later we went to our first Bridge School Benefit concert.
I want to make
this short.
It was
ecstatic. Pushing Lu up the hill to the special entrance for students and rock
stars. Special passes around our necks. Dora in our arms. A light rain falling.
A lineup that included Foo Fighters. Who? Dave Matthews Band. I had maybe heard
of them. Red Hot Chili Peppers. Definitely. And the lesbian identical twins
Tegan and Sara. From Canada like Neil Young. Dora and Lueza discovered Rock and
Roll. I rediscovered it. We all fell in love with Dave and Dave. Grohl and
Matthews. Their music. Their generosity at being there. Their handsome beauty. It
was bliss.
This year was
my 5th concert without Lueza. Usually I’m there with Dora but this
year she started music school in Boston and I didn’t fly her out. Jacek didn’t
want to come.
I spend most
of my time on the stage behind the kids. Some of them are former classmates of
Lu’s. Many are the new and current students. And there are always the ‘big
kids’ who are in their thirties. Many of the children have died since we moved
to California. Many more are thriving and happy. I’m still here loaded with laminated
VIP passes from the past 15 years and photos of Lueza around my neck. It is a
love zone. For the students and their survival and joy. For the artists that
make this phenomenal music. For Bridge School. And in gratitude for Pegi and
Neil Young.
