An account at first hand about the spinal stroke that left Sandra Bishop learning how to walk while living with suicidal pain.


The end of the world at a stroke

The Day After

Everything you think you have and everything you think you are goes up in a flame of a sentence when the person you love most is in mortal danger. The phone call comes in from her boyfriend, he’s in a hospital in Florida, Sandy is sedated and in intensive care, partially paralyzed below the waist and the words continue and I want him to get to the point: I don’t care about the packaging, is she speaking, is she Sandy, still? And then Kim is on the phone and slowly translates the news and again, all I care about is if Sandy is okay: is the little monkey that hops around on top of the organ grinder’s machine still a little monkey? Kim assures me that the problem is in the spine and not the brain, and I stop listening.

That was Wednesday. Kim left that night with Erwin after the hospital refused to let them stay in her room. Sandra was given massive doses of steroids to try to reduce the swell of her spinal cord, but her entire right leg wasn’t moving. The implications were harrowing enough, but we would have to go through hell until she awoke the next day and we could see if the steroids had any effect. I called Karen, Sandra’s best friend from childhood, and Karen is a therapist who deals with transverse myelitis victims, and this is the condition being applied to the axis around whom I swing. It’s the murkiest viral infection, and it’s the tentative diagnosis for Sandra. I don’t care where it came from or what it did to her on Wednesday morning, as long as she is still Sandy-wandy, and the studio and the books and cameras and every word I’ve written goes into the trash that night as I try to sleep in flames of fear.

Karen is devastated, because the settling of the virus can cause lifelong paralysis. If the virus starts in your head, you can be blinded immediately. But what causes it? I already know. Stress, stress, stress, and Sandra is a caregiver and like all caregivers gets used up until the flavors are gone, and all of us haven’t been noticing. There is a wonderful Arabic proverb: “When you have a friend, don’t lick him all up.” Karen’s exposure to the condition unsettles both of us, and I keep asking for the worst case scenario and if it means Sandra is in fatal danger, and Karen repeats what Kim has said: it’s in the spine, not the brain, in the packaging, and not in the spirit, and this is the sliver of silver I stab into my heart as I wait with a handful of other people to see what happens when the steroids kick in.

The next morning, Kim sends me a video: she is walking with Sandra, holding her hands, and Sandy can barely walk but she is on her feet, and when we speak she is hoarse and weak, but there is Sandra in the words: “I’m gonna get in a race on a walker with my Daddy who’s also on a walker, and I’m gonna beat his ass.” When we hang up, I literally pound my chest to get my heartbeat going and to remind myself of what every seriously ill patient hates to see, the sad shock in the faces of the people you love. That won’t be me. I spent two years in and out of a fetal position with a stage 3 cancer in Johns Hopkins, and learned to act just fine when my tongue felt like a hot lizard because I couldn’t stand the sympathetic worry of everyone else, on their feet, strappingly robust, keeping to their schedules, pausing at my plight from fear that they too might be where I am, one day. Sandra went through that cancer with me, every step, and always reminds me that we have to edit all the footage because it's a guide to show people how to become an actor to keep everyone else in your life from falling apart when you get a fatal diagnosis; and I always reply, I've got better things to do, and she nods her head, "Yes, you do."

Mark is holding his breath when I tell him about Sandy, and about my own strange vertigo/stroke event of the Saturday before, which I have written about in the context of the Glen Hansard concert a week ago, and Mark says:

“If anyone should have this sort of health catastrophe, it should be me, because I am eating ramen noodles and snickers bars and hot dogs every day,” and he pauses to send me a picture of all the fast food wrappings on the floor of his passenger’s seat, and I say to him: “Well, Mark, there’s only one thing to say about that, and that is, You’re next.” And he laughs in his wonderful booming laugh, like the fat man on the Johnny Carson show, and when I tell this to Sandra’s mother, she laughs too, and when I tell it to Sandy, she snickers, and this launches us into a very interesting observation:

We are children of catastrophe. Nuclear holocaust was possible throughout our childhood. Medical miracles keep us alive longer and generally better, so we will invite more life-altering events that we survive and then have to live with the consequences. The cancer should have killed me. The steroids might bring Sandra’s leg to life, but without them what would the virus have done to her? “You’ve been shot at, Sandy, and missed, so you can’t just stand right back up and keep going the way you were because the next shot will put you down.” On the phone with her mother, I say “Sandy’s life is going to be different, and the only thing we can let her do is play with the dogs, and sing, and finger paint, and nap, and create the little pieces of art she loves, and sleep, and then wake up the next day and do the same thing, along with five hours of rehab every day that will make her cry like a soldier in boot camp.” And Grace, a nurse, is listening on the phone with Sandy’s mother and says, yes, that’s it, beautiful.

On Friday, another video comes, and now Sandy is dancing and juking in the hallway of the hospital corridor, still dragging her foot a bit, but nothing like Thursday, and Karen calls me: “Did you see how she was holding the IV pole? You can’t put your weight on that, so she was pole-dancing on her own two feet!” And I say to Karen that Sandra was a champion swimmer, and surely in the rehab this will feature, because she will have to kick to move efficiently though the water, and Karen says, “yes, yes,” and suddenly we are all aware of the disaster that was missed and not just the disaster that will stay. Sandy won’t drive a car for awhile. She won’t be able to look after her Dad, a plump ghost who comes out at night looking for bananas or popcorn to whom Sandra has been both doctor and sheepdog for years. She won’t be able to work for a little while at the trauma center. But she’s still Sandy, the runt in a family of fighters, the fiercest of the litter because of the training of not one but two older brothers. The fight will come in song and swimming, in acting and mimicry, in the search and measure of beauty and not the protection of property.

Her voice rages back into shape by Saturday night, and she is calling late, making plans, everything is different, she uses the word “downsize” fifty times in our conversations, and the hospital doesn’t want her to go but she will sneak away later today and fly into DC tonight so Mark and I can go out and pick her up and start the next phase of our lives, more better, more laughs, more making stupid stuff for youtube, and more careful construction of the secret literatures we’ve been creating for 15 years. What madness has caused us to stray from our creative urges? We can’t go back, but we can go forward differently. We must. It’s time to play.

We joke about Carpe Diem, that silly Latin encouragement. Yes, we are all seizing the days, but what for? We should be putting the days into our seizure. What are we seized by? Put every day into it, we say, and we resolve on the spot to make a pair of pants with big lettering along the leg, “Fuck the Diem,” on the left leg, and “What’s your Carpe?” on the right leg. And Karen says there have been lots of docs made about transverse myelitis, but if Sandy were to do one, “it would be a lot edgier,” and suddenly the future looks as pregnant as it ever did.

We agree, solemnly, that we will quicken our work on our musical about the Brothers Grimm. We have worked out three songs, and one is a beautiful recording already, with a music video we can complete by Sandy’s birthday, at the start of the New Year. We’ll have a party, and you’re invited, and all of us will get there and poke the monkey on top of the organ grinder and get her to perform and not one person will look at her with a sad face, right?

And one more thing, I say, and Sandy knows we’re on a roll now, with the freedom to plan that only comes after you’ve lost everything, we’ve got to make sure that all those prayers that were going to go to you should really go to the little girls in Syria on whose heads bombs are dropped in our name and in the name of our enemies. “Yes,” says Sandy-Wandy, “They need the prayers more than I do.”

I am the richest person on the planet, because nothing matters to me more than my friend. And only a few days ago, I was in the basement of whatever hell is, enflamed, afflicted with misery and paralyzed with fear. This is life in our generation. A sudden shift in the sands, and all is lost. Our survival will depend on how good we are at giving everything when we have nothing. Poverty of the pocket, maybe, but profit in the spirit, definitely.

You’re next.

run away to play

5 days after the stroke

Sandy, I'm thinking of you with every step and every click, wandering around a chilly summer playground that is almost closed but still vibrant  and candy-colored, filled with small wonders if only I'm willing to step a little further into the icy night, a bit more beyond the comforts of my pillows. These are my first tiny contributions to the study we always talk about but are too busy to undertake, of how beauty searched for and worshipped and turned into weapons of mass love to convince our enemies that wonder is the only thing worth fighting for, even more so than love, because if you have to fight for that it's not love but hope. The wonder in beauty, and the beauty in wonder, this brief formula is a universe of delights beyond any imagination, so let's start recording what we see. Love you love you love you as I wander like a wobbly planet whose orbit has been momentarily imbalanced, finding myself in Coney Island at midnight, talking to you about my day on the runway among the jumbo jets at JFK, screaming past, one howl of a near-miss after another. All those people coming to the USA, peering out of their windows and seeing me with a camera capturing their safe landings. One pilot kept his bird afloat another hundred yards, a Lufthansa 747, just so he could land close enough to me and Helmuth to make us hear rubber squeak like broken guitar strings as it meets the tarmac, suddenly brought to life, rolling, and if I'd tossed a baseball I could have popped him on the wing; the Port Authority boys told us to get as close as we liked, and afterwards the deputy manager of JFK gave me his card and said he'd love to see what we were doing because it made him laugh, and this is just another afternoon out in the sun, wondering what strange step comes next. Get your walking boots on. Let's go visit Sheila in Costa Rica and Renee in Bahia, play in other cribs!


Nobody reads Camus any more. Unless they've got grey hair, or unless somebody with grey hair and some sort of academic power tells them to.

But our minds are transforming, as surely as the weather changes. We are becoming polluted to death. The brilliant public health commissioner of Baltimore, where public health is critically ill, Leana Wen makes sure in every interview to drop the phrase "diseases of despair." This is the phrase we will all be hearing for the rest of our lives. In the small town of Johnsonburg, Pennsylvania, I find myself daydreaming about a reality show I will call "Goodbye, America," and as I check the web for facts about the town, I am repeatedly guided to nearby centers of drug abuse or health rehabilitation. These are the symptoms of the "diseases of despair."

But the causes are existential, complex frustrations of time passing quickly, the toxicity of money, and the steady death of god. My generation, silver haired foxes, are stuck with mortality in surprise. And we are cursed to live longer in more brittle ways encumbered with greater pain and buoyed by caffeine and sugar and painkillers. Sandy and I should both be dead. If we were our parents, we would have been. We've been saved by chemicals, and machines. But our thinking has become terminally mortal.

It is not the act of dying that we fear. It is the state of being dead that dogs our lives. But what happens when this state is desirable because the pain you feel has numbed you to the joy of living? Every instinct to breathe and to keep moving is compromised: curl up in blankets, and let your senses go dim, and the end of the tunnel, darkened without senses, no sight or sound but most importantly for the animal no touch, suddenly becomes a destination and not a fall. You drive out of your existence, lonely marathoner, each step erasing who you were until you see the signs of how many steps you've got left, and you stop in fright and disbelief, because the future never looked so small.

Searching desperately for ways to keep Sandra creative, in my belief that creativity, a child's play, not the idiotic monetizing of art that makes us idolize or collect as investment, can somehow keep her mind off her pain, I am spinning a web of music, hoping to catch her attentions. We sing to survive, as I am always writing, we dance to keep our senses sharp for hunting and fucking, those worries of the future, so I am sure another melody and a better beat can get our minds out of the tunnel and back into the skies where we met, two innocents walking their imaginations among the clouds.

Which brings me to Camus, that expert on suicide. And to the groove in music, which nobody can define. Daniel Levitin has tried to write about the groove, and gave up, in his excellent "This Is Your Brain on Music." He couldn't do it, nor has any other writer on music, including the scientists (Helmholtz to Huron), the brain experts (Patel to Sacks) or the most expressive musicians themselves (Gould to Keith Richards on his grandfather): the groove we all know when we hear it is a phenomenon without formula, uncracked by anyone who plays music or has tried to explore how the brain processes or creates music. You know the groove when you see it (or hear it!), but it cannot be formulated or transcribed. Maybe Kerouac, that hopeless misanthrope, came closest in his groovy writing about how to listen to music while escaping one's responsibilities by hitting the road, but he wasn't smart enough to make poetic what he wanted to intellectualize, which brings me back to Camus.

There's only one thing you need to know about Camus, even though his writing (and his thinking, and his feeling!) rewards you with the deepest appreciation for being alive, for drawing a breath, even in pain, to have the pleasures of thought and desire. (And this is my own aside, because thought and desire combined equal beauty, don't they?) But what there is to know about Camus is right here:

Death if we think about it without fooling ourselves would paralyze us in fright. We are mice frozen in front of the fangs of that great snake, forever, which will swallow us in this very next instant, so why do anything. What's the point? You stand up in front of that snake and shout out your plans for a musical, or a movie, or a poem, or a little hum, pretty and precise, or you paint buffalo fornicating on the walls of a cave or cover your hand in beet juice and leave a palmprint before the snake strikes. You cheat death, says Camus, by creating. Because, what's the point?

Creativity is our groove, Sandrita. It's the only thing we have. And I see that we are trapped by poverty, crushed by responsibilities, timeless, forced to lockstep with everyone willing to trash their lifetimes in the name of their children's futures, hoarding treasure in the crannies we back into as life streams by our caves. We are becoming lobsters even if we still think like gazelles or cheetahs. How is this happening to us?

The pulses they're putting into your brain, five thousand of them into your cortex in 40 minutes, every day, a sledgehammer of hope breaking up the crusts in your consciousness, they're trying to give you the time to find your groove. And you, gazelle, can still walk the far distances of our imaginations in the lilts and builds of our songs. The groove is still there, always lurking, never dependent on the audience, but wholly caused by the spirit of the players. We just have to sing and dance, and the groove becomes something anyone can touch. They are transforming your brain with those 5,000 zaps, and it's working, because a few hours ago you told me you were at 7 out of 10 on the pain scale but you were not thinking of jumping off the building, and you admitted that is progress, even though I could hear your teeth gritted, grinding, making my heart stop, and when I hung up the sense of impotence was felt most in the silence of the studio. No music, no melody, no rhythm. We mustn't let this happen to us.

I know you are crying in this picture, but ten minutes later when the Persian walked in you were performing, amusing her, dancing and employing your accents and personas, an absurd tiny theatre, just for her in her lab, and she was grinning like a fool, drinking you in, curing herself of whatever ills her own routine brings. I must say this very carefully: you are the only person I know whose audience is her stage. Wherever you go, there is the show.

They, the scientists, the only tweets that matter, have found new kinds of black holes, Sandy. One of these new types of black holes just ripped apart a star so violently that the light released by the explosion was 500 billion times brighter than the Sun. That's astrophysics talk: what matters to us most is that this type of black hole has a great name, "super-massive." And that's the name of the show we still have to do.

The theatre is dark. We don't know what to expect. The stage is a black hole, and the audience is a galaxy of hopes and dreams and feelings, willing to ride our tides into the unknown if we give them the groove we can imagine, a performance we can call super-massive, a piece of beauty lit up by darkness.

Feature 3

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