2015 Bridge School Benefit Concert

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 23^rd street. Try not to think about killing myself. Calm down Lu in her classroom and cross 23^rd 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 5^th 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.

All Manner of Things

I would like to start living in my bed.

Like an invalid.

 In a wonderful long nightgown. Soft pale feet. Translucent. With very clean toenails.

Surrounded by books and a tea tray.

And a small wise woman who would bring me things.

All manner of things will be brought to me.

Ancient maps. And China teapots.

Pebbles from the sea.

Tiny books of poetry.

Cryptograms.

Sometimes she would help me into the chair by the window. And I would rock gently and stare at the sea.

 Or perhaps

Wild horses in a field.

And I wouldn’t want to go anywhere.

My room would be the whole world.

Letters would arrive. With stamps from France and Tunisia.

People with orange trees. And jasmine. And tea.

Begging me to visit.

Take the train they would say. We will meet you.

Your bed will be ready. Clean sheets. Rinsed in rose petals.

And your tea will be brought. They would always promise me that.

 The air they would say. From the sea, they would say.

You will grow stronger.

On the train I almost die.

 All manner of things will be brought to me.

 Priests and Lamas. Hermaphroditic scholars. Dogs with three legs and cats with six toes.

 People will lay their heads on my lap and pray for me. They will conjure images to make me well. They will bring me bowls of blueberries and plums.

I will only eat dark fruits.

All manner of things will be brought to me.

Blackberries and plums.

They will feed me soup. Dark soup.

And there will be dances. Primitive dances. Drumming.

Dervishes will be summoned and they will whirl.

 I will be brought back from the brink of death.

When I wake I am wrapped in a blanket. A soldier is kneeling over me. He is stroking my hair. He has these beautiful hands.

And there is a child in a tiny wheelchair. A crippled child who cannot speak. She has these floating athetoid movements. She cannot stop moving. And she is smiling at me. Strapped and shackled in a wheelchair.

 And her wrists are twisting this way.

And her skin is like petals. Peony petals.

 And she is smiling at me. And laughing. Because I am lying on a floor wrapped in a blanket.

The air in Tunisia is soft.

I bring the crippled child with me. And the gentle soldier. We stay with friends on the sea.

Carthage. Settled by the Phoenicians. Queen Dido. The purple people. Slaughtered by the Romans. Cursed and covered in salt.

Carthage.

They bring tea. Oranges.

The soldier builds a ship. The crippled child’s hair turns white in the sun. Our feet turn brown.

On the full moon we sail away.

I learn about the wind. Celestial navigation.

The language of boats. Winches and blocks and shackles. Ropes are called sheets.

The little girl loves the sea. We fashion a seat for her and she rides at the top of the mast.

When storms come she laughs.

At night we sleep on the deck and the soldier tells us stories of places he has been.

 Palawan and Surabaya. Sumba and Buru and Seram.  I tell him that I used to live in a very beautiful room.

On the full moon we sail.

Arts and Crafts for the Griever

"Saddened as I am by loss, my heart lifts in gratitude for the richness Lueza has brought to my life"

This is a quote from Daily Meditations for Working Through Grief by Martha Whitmore Hickman. She came to this work after losing her daughter in a riding accident many years ago. I ripped out the piece of paper and added it to my collage on a wooden shingle. A laminated card of the Virgin Mary. Lueza loved Catholic prayers for some reason. Catholic prayers and holy water from a Russian spring that a friend had brought us. I'm an agnostic in search of deep ritual. My closet is filled with rosaries and buddhas. Small religious medals that I found in a California Mission town antique store. An image of the Virgin of Guadalupe on a piece of tin. I think I'm making icons to Lueza now. It's peaceful. This photograph of her was taken when she woke up from her tracheotomy. Calm and happy to see us. Breathing freely for the first time in months. 

Her Pulmonologist was impressed. He told stories about her.

I've become my own art therapist.

Jizo

A Day With Jizo

Jizo was a Bodhisattva. A Buddhist saint who would remain on earth until all the creatures were out of hell. Something like that. Jizo was also the protector of mothers in labor and aborted and miscarried fetuses. He was the protector and guide of children that had died. He would help them cross through the scary after-death realms and reach the good place. I was unclear about some of the details. I had thought that Buddhism was without heaven and hell but I didn’t care. I was glad that Jizo might have been there when Lueza had died alone in her bed.

The Jizo ceremony for Children That Had Died was held in a yurt at the Zen Center in Marin County. I wasn’t a Buddhist but I had read bookshelves full of the modern American Buddhist writers. I had been reading about meditation for thirty years knowing that someday when I could calm down I would meditate. I had been collecting Buddhas ever since my grandfather died in the early eighties and when asked what I wanted from his office of things that had been spread out in the family dining room I took the hollow clay glassy green glazed Buddha. After contacting the Zen center to RSVP for the event, I received an email about bringing red fabric and scissors and thread. I wanted the red fabric to be meaningful so I found a pair of Lulu’s stretchy red leggings and cut out a square. I found a spool of red thread and a pair of scissors and placed them in a plastic baggie. The day before the ceremony there was a street fair in our town and a vendor was giving away free fabric swatches and I found the perfect red square and wasn’t it synchronistic.

The center of the yurt was filled with flowers and scissors and more fabrics and bits of parchment paper. The edge of the yurt was covered in candles and there was a bowl of water and rose petals and a black figure of a Buddha. The Jizo statue was standing with a staff in his hand and the stylized face of a calm monk. A relaxed baby monk. Also in the center of the yurt were large bunches of rosemary which were for remembrance we were told by the Buddhist helper priests. We learned about Jizo and his guiding of the children past the hell realms and into nirvana. We would be making offerings for him. We would be writing prayers and sewing them up into other fabrics to hang on the special tree in the Green Gulch garden. I wrote love messages to Lulu and rolled them up and stuffed them into the red pouch that I had sewed out of Lulu’s leggings. I placed some bunches of rosemary inside and sewed the pouch shut with a tiny branch of the piney rosemary sticking out and then sewed the little pouch onto the red square of fabric from the street fair. I wrote messages to Lu and rolled them into a tube shape and wrapped twine around them. We walked in a circle and read the words of a Pali chant about impermanence. Ga te ga te para ga te Parasam ga te Bodhi Svaha. Gone Gone, Gone Beyond, Gone Completely Beyond! Awakened Spirit Aaaaah!

We placed our red fabric offerings next to Jizo in the yurt and walked outside through the grounds to the garden to hang the rolls of paper prayers on the tree in the Garden of Remembrance. Coastal Redwoods and Douglas fir, Monterey Pine and California Bay Laurels. Somewhere was the famed Green Gulch organic garden that fed the Buddhist visitors and tenants and a famous vegetarian restaurant in Fort Mason. Fog from Muir beach was heading up from the lower meadow. Dwellings for meditators were tucked everywhere on the property.

Driving home through Marin County I was holding my belly fat with my left hand as I drove. I had an entire handful of lipid-filled soft flesh that could be grabbed and pulled outwards toward the steering wheel. I tried stuffing it into my pants. Maybe the waist was too low and that’s why everything was hanging over. It was the clothing. How had this happened? I estimated the weight of the fat as low. It was just a fluffy kind of fat. A couple of pounds in my left hand. If I could walk up more rattlesnakey California ridges it would disappear.

Racing down the freeway towards the Golden Gate Bridge and the invisible jumpers I dreamed of life without clutter. I imagined rows of baskets holding gently folded sheets that had been rinsed with lavender water. Everything had labels. Drawers full of supplies. Tape and scissors and paper clips and pens and postage stamps, batteries and glue and rubber stamps with ink pads. Ribbons and paper for wrapping gifts. Beads and strings. Jars of white buttons and baskets of thread. A life of order. I wished I was a devout Catholic. I loved rosaries. Prayer beads. Late at night I would Google  ‘rosary’ and read about its history. I loved the Hail Mary. I had to learn the words once for an Irish play and it was as if I had always known it. I’d say it in the super fast way of an Irish woman with mud-covered rubber boots who prayed special prayers throughout the day. HailMaryfullofgracetheLordiswiththeeblessedartthouamongwomanandblessedisthefruitofthywombJesus, said in a thick Irish accent. I imagined tea parties. Plates covered in yellow cakes and buns. I loved the English use of the word bun. Treats and dainties. Buns had nothing to do with hamburgers. I thought of starting a phone-tea company. Instead of phone-sex there would be conversations about tea. Darjeeling and Nepalese black. The smoky Russian teas for samovars. Teapots. Cambric tea and red-lipped children in nurseries speaking in English accents with powdered nannies who would live with them forever. On the freeway south of San Francisco I passed a billboard that said: Sedation Dentistry. I considered other possibilities. Sedation marriage. Sedation grief.

I laid my hand on the Jizo offering. Foresty rosemary sprigs poking through the stitches. A lumpy velour pouch sewn onto another square of soft red velvety material. The car raced south out of San Francisco on the 280. Near Millbrae the fog became visible. Pacifica would be in a whiteout by now. My town would still be sunny. If the winds came up I could sleep under down with the windows wide open and everything too bright from the moon. I would grill zucchini, red peppers and onions until they were black and caramelized and lay them on top of whole wheat spaghetti and shake a pile of Parmesan cheese on top. I pinched off a piece of the rosemary that poked out of the red velour Jizo offering and held it under my nose. It smelled of Christmas.

She May Be Lying Down But She may Be Very Happy

This is what my husband Jacek (yat-sek) said to me when Lueza was a baby and we didn't know how severe her birth injury would be. Would she have a limp? When would she walk? Would she be like Daniel Day-Lewis in 'My Left Foot'? I was starting to get hysterical as I contemplated all possible scenarios and I whined to him: Will she always be lying down???????
To use the word 'whining' is not friendly to myself, I was terrified for our baby, but my hysteria was a problem at times…….
Jacek was calm.
He doesn't even remember this moment.
She may be lying down but she may be very happy.
Everything shifted.
I could breathe.
We would be okay.

Rough Landing

Landing In Afghanistan                                              

Someone once compared having a disabled child to landing in a different country than originally planned. The essay was about planning a vacation to Italy and landing in Holland. Your dreams and guidebooks were for Italy and all its treasures, and Holland, though beautiful, was not what you wanted. You had waited your whole life to see this ancient country with its art and monuments and passionate gesticulating people and your plans were inexplicably ruined. The plane landed in Holland.

You were planning your life with a normal child and your child was not what you expected and life would be different. Your heart would rip open beyond what you thought was possible. A country that you had no interest in going to but if you opened your eyes and accepted this new world its beauty would be revealed. I liked the analogy. It had been faxed to me by our hospital social worker when Lueza was an infant and it was clear that she had sustained a brain injury that wasn’t magically disappearing as I had hoped. The plasticity of the brain wasn’t working out. A catastrophic accident had occurred. There had been a cosmic mistake. God had chosen the wrong person for this test. I was too weak to cope. Because I was so weak and hysterical Lulu would have to be okay. This story kept me walking and talking when I longed to drop to the floor and writhe and rend my garments.

Holland was a gentle place in my mind. I had cycled through the Dutch countryside on a student trip in high school. I knew that they had a high percentage of home births. It was filled with Rembrandt and the sacred memory of Anne Frank. They could all speak English.

I wanted to write my version of this unexpected landing. We hadn’t arrived in Western Europe. There were no tulips. No English was spoken. It was on the other side of the planet from where we were hoping to go. Terrorists had stolen our plane. We had crash-landed in Afghanistan. Our baby had barely survived the landing. Her brain was exploding with seizures. Babies were dying. We donned paper robes and held our wire-covered baby who slept for 6 days flooded with Phenobarbital. She was nourished with my breast milk through a feeding tube in her nose. Her seizures became almost invisible. A little gray ashy color would spread around her mouth and let them know the brain was seizing. I thought Lueza was dying. Screaming brought nurses who explained that it was not death. Her brain was just convulsing and because she was so sedated with barbiturates all that showed was a lowering of oxygen in her face.

Holland couldn’t be this terrifying. Everything was too extreme here. Birth and near death. Baby rushed into territory of hospital with other doomed babies. Giant radioactive machines being wheeled around close to babies. Babies who were see-through and not quite finished. Eyes taped shut. Sporting hand-knit volunteer donated wool caps to maintain their body heat. Language being spoken that was incomprehensible. No guide books for Afghanistan. War was unending. You could die of exposure in the frozen mountains. A terrorist could blow you up. Only way in was through a warplane or a crash landing. But the people were famous for their hospitality. They would share their last cup of tea. The beauty of the land was extreme. People lived there and raised families. The love was fierce. Someday I thought, I would write my version of Lueza’s early days and how it was. It was hard to breathe when I remembered this time.