Writing Out Illness
by Bob Seder & Jean Churchill

For twenty years Bob Seder was a production and lighting designer for many dance and theater companies including David Gordon, Lucinda Childs, Meredith Monk, Carolyn Brown, Eric Bogosian, and Philip Glass. He was a semi-finalist for the Julie Harris Playwright award in 1987 with Light, and wrote several other plays produced in New York City, Madison, Wisconsin, and Boston. He also wrote novels and his own memoir To the Marrow, an account of his first bone marrow transplant. Bob taught many writing workshops with Bard students and with adults in the Bard Continuing Studies Program and Intergenerational Seminars. He was an enthusiastic participant and teacher in the Bard College Language and Thinking Program, and also offered "Writing Out Illness" workshops to the community. On March 6, 2002, Bob Seder died of infections resulting from his second bone marrow transplant. Below are selections from his writing, in honor of his life of writing and teaching about writing.

* * *

In 1997, Bob was active in a tissue-typing drive here in Red Hook. He wrote to the editor of the local paper in support of the drive:

As someone alive today because of a bone marrow transplant, I urge everyone to participate in Red Hook's tissue typing drive. At the least, you give a tube of blood; at most you get the extraordinary chance to help save a life. For the unrelated volunteer, marrow donation is indeed an act of great generosity.

It is a rare chance to save another's life, and not without self-interest. Disease can hit any one of us from out of the blue. It hit me. The larger the marrow donor pool, the more likely you'll be to find a match if—heaven forbid—you should ever need one. You have a chance now to add to this pool of goodness. Or you can pass it by. I hope you never need to drink from it.

* * *

Below is the ending of Bob's memoir about his first bone marrow transplant, To the Marrow:

YEAR FIVE (1999)
I am still here. Still breathing, still talking, still tickled to be alive. But I have to tell you right off, no matter what else I say, no matter how glad I am to be in decent health for a guy approaching fifty who survived bone marrow transplant, who dove down and floated up gasping for breath and is now breathing easily, let me tell you it is not over. It is never over. I am a marked man. I live with one eye over my shoulder and an ear to the ground. No more nasty surprises. Please.

I am reluctant to even breathe the "C" word (not cancer, I can say that one easily enough, but the c—re word) for fear that I will jinx my life and anger the gods. Who are we to think we can beat back the fates with medicine, with our guts emptying from both ends, with fevers, rashes, coughs, infections, lord knows what all, as if enough suffering brings release?

One day shortly before my door was opened, a friend of the family sat at the foot of my bed, and we joked about the clean gowns and the dirty floor. Then she paused for a moment and said, "You are my hero." I was touched but said nothing. I don't think so. We who have been through this are not heroes, and neither are the doctors, nurses, and caregivers saints. We are people hungry for life. Is fifty a full life? Not for me it ain't. Maybe this is just what my friend, with her own health problems, meant by hero.

And my transplant was not at all so dangerous as one done with donor marrow. When I think of the additional risks and complications of allogenic transplant, I too am in awe of the courage this takes. Having had the rotten luck to come down with this disease, I certainly thank my good luck that lymphoma was shown not to have spread to the marrow, making me a candidate for autologous transplant.

On my way into transplant, I talked about death. I said, "Death doesn't frighten me. Death is nothing. Dying (I picture a long painful suffocation) scares the shit out of me." Saying this made me think for a while I could taste death. But when I sat in the Farber outpatient clinic next to the guys in wheel chairs who had come out the same time I had, and I wondered how they could have been laid so much lower than I and whether I should have been given even stronger medicine, I knew that I had not tasted death—not really, not deeply. In some deep place I never really doubted that I would come through. Was this faith or knowledge? Who knows. It was not death.

In optimistic moments, we think we've banked up enough health or suffering or goodness to see us through, but each new crisis has its own demands and chance of disaster. People say to me: You've been through enough, don't they know to leave you alone. There are no guarantees. Hooray for bone marrow transplantation. I lived to tell the tale. I have dashed across the intersection and the bus has just missed hitting me. Don't rush, there'll always be another.

But why so wary? you ask. Five years later, how come you won't talk of cure? (You said the "C" word, not me.)

When I first met Dr. Neil Spector at Dana Farber a year before transplant, he said, "With you we will probably never talk about cure. We will talk in terms of long-term disease-free survival." This disease is considered incurable and, even when they have been able to produce long-term remissions, the disease comes back. Going into transplant, long-term remission sure sounded better than cycles of treatment and partial remission. But if the disease is lurking somewhere, being out of transplant a long time puts me closer to relapse, not further away from the disease. Now, you aren't supposed to think like this.

Think positive, they tell me. Think, it's gone. I look at it this way, the wariness keeps the disease at bay. I feel comfort in this wariness, this suspicion. It is work I can still do. Living through the transplant I had to keep an eye on the future. If I didn't look through the mess I was living in toward something a bit tidier and more pleasant, what would have been the point? Now that future is here. This is the point where the pundits of positive thinking would have me tell you to: "Live in the moment. Live for today because who knows what's coming tomorrow." But it doesn't work quite that way. The disease and treatment shook me profoundly. I remember the moment in the lounge just after my door was opened: I felt I had climbed a great height, and the view from the top was magnificent. As appealing as it might be to dwell at that I height, I have come down to ordinary life, and in life we are always looking ahead and looking back, up and down, everywhere but right where we are. I'm caught looking at my feet when there's a gorgeous sunset to see. Look up dummy. And I do glimpse the sunset just before I focus on the strings of tiny dots floating in my eyes.

Or I sit typing away in a little room while my daughter calls sweetly from the yard. Like any little girl's, her call won't stay sweet long if I don't answer it. She wants to show me something she's made on the lawn. I save your file and go out and look at the "Indian village" she's built out of sticks. She reminds me that next fall after I cut back the hydrangea stalks I shouldn't throw them away "like I did last year" because they'll be great for her village. She smiles up at me, and I'm caught between wondering how I'll ever remember her sticks in eight months and wondering if I'll be alive then. Old habit. She goes back to her construction work, but I know I missed something in her eyes while I stood wondering.

I go back to my typing. I do get busy with it. I worry about death and taxes like everybody else. If I don't live in the moment, appreciating every breath, I do live with greater awareness of how close to the moment I am not living. It's right there at my shoulder, and I can be stopped at almost any hour of the day or night and draw an appreciative breath. Something has to stop me though, and lately those somethings have been crowded by other thoughts of teaching and the family. Before transplant I wasn't so willing to stop or be so appreciative. I cannot but say that my life, what's left of it, is better for this new way of breathing, even with damaged lungs.

Is that sentence wary enough? No more nasty surprises. I wish. And now I think my wariness will somehow protect me from the shock if I should relapse. But you'll see; if it comes I'll be devastated. There is no thorough preparation for cancer or for transplant. There is only time.

The day after my door was opened, I was walking the floor and met the nurse who had given me the first dose of chemo and whom I hadn't seen since. She asked how everything had gone, and I gave her a very quick version of my story.

"Oh, you sailed through it," she said. If you can call getting caught out at sea in a hurricane, sailing.

* * *

In 2001, Bob was diagnosed with myelodysplastic syndrome, which he probably got from the treatments for lymphoma. He did, after all of this, have to have the more serious and extremely risky bone marrow transplant with tissue from an unrelated donor. Bob and his donor were permitted to write, but not to know each other's name or address. He wrote to her:

Note to the Unknown Donor
You don't know me.
I don't know you.
We share something with only
five others in the known world:

A2402 — B35nd —C04apa — 1104 — 02 — 03af
That's us.

You've agreed to give of your very marrow
so that someone somewhere might hope
and live.
I've agreed to be sicker now
so to fight disease
and live.
I know you to be a generous person,
wondrously so.
Being receiver makes me no less a one,
one for longer if not better.

You do not know I am older than you,
but you do know I'm not old enough to say,
That's all, I've had my share.
No, I'm hungry still.

Giving does not protect you.
When your turn comes,
hope some stranger steps forward as you have.
For now your goodness goes noticed and applauded.

We don't know each other,
but I know you are in good in health.
You know I'm not.
I can guess you are bigger than me.
Now you know I'm small.
Do you prefer to walk,
to hear your daughter (if you have one) sing to herself,
to remark on the June morning's sun
hitting a north window sill where it won't again
until we know each other's names?
So we know something.

You don't know me.
I don't know you.
We are (they tell us)
unrelated.
I don't believe them.
Back far enough
we share a great great grand
someone.
Brothers we aren't,
long lost cousins surely.
Lost to whom?

I know you
cherish life or you would never have offered.
You know me
in my fight for life.
We live on
to enrich
the daughters' song.

"I hear Abraham arguing with God: Will you save my draft if I can find ten good sentences in Sodom?"

"You have ten good sentences?"

"Not quite."

"Are you even ready for me to judge your sentences?"

"I just wanted to know in advance I'll have a standard to shoot for."

"You want to know what will be good enough is that it?"

"Well yeah. I mean I don't want to work my butt off for fifty and find out that all you wanted was ten. That would be a waste."

"How many sentences do have so far?"

"Just the one."

"Not enough. Good or bad."

"Right. But can't you just tell me so I'll know what you want, and I won't have to beat around the burning bushes to figure this out."

"You're getting ahead of yourself."

"I know, but can't you just tell me, God? Why do you have to make this so difficult. Just tell me how many good sentences my revision has to have and that's what I'll write."

"You will?"

"OK. I'll try and write."

"You have one sentence now?"

"Yeah one, but I have a few more in mind."

"Glad to hear it."

"So how many good ones do I need?"

"All of them."

"God, you are so difficult."

"Don't forget who you're talking to."

"You expect perfection? Every sentence?"

"You are not in such bad shape, relatively speaking."

"Right. I got only one good sentence to my name."

"But if it's a good one, then you have already revised well. All your sentences are good sentences."

"What is this, Zen and the Art of Syntax?"

"Here's a rule for you. Sharpen your pencil."

"I'm ready."

"That was it."

"I know the sound of one pencil sharpened. Give me another one."

"Rule One: Revision starts before the first draft. Some people say before the second sentence. Rule Two. Disturb the form."

"What form?"

"The essay. Don't you think that our conversation has disturbed the form of the essay?"

"Is this an essay?"

"Rule Three: Revise on different levels. View the draft as a body, a person or maybe a whale. It has three levels: the bones, the muscles, and the skin. The bones are what your piece has to say, the muscles how you organize to say it, the skin the style and mechanics of your saying. Rule four: Read aloud. That's what we are doing now."

"I hear you."

"Rule Five: revising may not make the writing better. This does unfortunately happen."

"I haven't written a sentence yet better than the first one."

"When it comes to revision, cleanliness is next to nothing. Messy is OK. Rule Six: Revision is a series of negotiations with the self, the writing, the respondents, the teacher, and the culture."

"Wha zat mean?"

"Talk to yourself, talk to the page, listen to people who read your stuff, talk back to the teacher, smash your TV."

"If you say so."

"Believe me. But I'm the only one."

"So now God, will you save my draft?"

"What on earth do you think we've been doing? Look, you're in charge now. I gutta go."

Here is a letter written soon after Sept. 11 2001, while Bob was still confined to his rooms in Boston because of the transplant.

To his friends through email:
Sept. 27 2001
During the horrific events Tuesday, I had moments of feeling very small beside such suffering. When I went for my evening walk in my face mask and gloves, I could sense people looking at me strangely, as if I had just walked out of the TV pictures from Manhattan. I used to live in New York but this wasn't the fear I woke with in the middle of the night. In hospitals around the country on Tuesday and Wednesday, people were waiting for their cells to arrive on a plane that could not fly. I felt blessed again. Today I do not feel so small. I feel the work we are doing here, patients, doctors, nurses, donors, (and writers, artists, dancers, therapists, architects, lovers, parents, all of you) is so life affirming in the face of such disregard for life, that it is a large and important if sometimes quiet effort. Jean and I wish you healing and love.