I’m writing to save my life
The Sutterwriters Group has an unorthodox way of healing the sick—urging patients to set pen to paper.
At its best, being a member of the Sutterwriters group was like being part of some secret society, one of perhaps a dozen men and women sharing confidences, spinning tales and confessing artfully to one another that we were deeply afraid to die.
As one member said in a later interview, it normally would take years of therapy to share the secrets of our lives the way we did in that workshop. As one of the newly initiated, and a trained skeptic, it took me weeks of meeting faithfully with everyone around the big conference table after hours in the Sutter Cancer Center’s research library just to discover why such honesty was worth the risk.
I’d heard about the Sutterwriters from its founder, Chip Spann, a former medical administrator who believed writing could help people survive life-threatening illness. I ached to know how it worked and had planned to observe a whole six-week workshop, until Spann called the office in late May, sounding apologetic. It seemed, he said, that some of his writers were uncomfortable with a journalist in attendance. I could come on one condition: I had to write and read aloud just like everyone else.
My instinct was to huff and puff like some big disgruntled bear, to insist that his plan would threaten my journalistic objectivity, my credibility. Besides, I offered weakly, I’m not even sick.
Spann was calm. He was sure I would get something out of the experience. As for objectivity, that itself was the sticking point. These workshops were highly subjective places. No outsiders allowed. If I was going in there, I was going in there risking what everyone else risked.
At first, the rules made the whole workshop environment seem artificial. There behind the bookshelves and the rack of hand-knit caps for chemotherapy patients, we were supposed to write reflectively for 10 minutes, reject the impulse to edit, read aloud and only respond positively to other writers. Only respond positively to a piece of writing? It sounded like we were charged with pumping up each other’s self-esteem; nothing in graduate school ever encouraged me to be kind to other writers. But Spann wasn’t just interested in the quality of what we wrote; he wanted us to trust each other, to share our deepest, scariest feelings.
Once a no-nonsense administrator for a cardiology clinic at Duke University, Spann had been influenced throughout the years by some of the rhetoric of the New Age gurus who popularized holistic medicine. He’d also trained with Pat Schneider, who has a master’s of fine arts, is founder and director of the Amherst Writers and Artists Institute and is the person who developed Spann’s workshop model. Schneider used writing to help women in subsidized housing overcome poverty; Spann used it to help people live with serious illness.
On the first night of the fourth Sutterwriters workshop, I walked in expecting to find a group of fragile older folks and instead found a healthy-looking, attractive group of professionals from their mid-30s on up. It was invisible from the outside, but many had been through drastic surgeries, had fought for their lives and had lived with countless medications and therapies for everything from arthritis to epilepsy to cancer.
I’d come to see if a writing workshop about illness really could, if not cure disease, at least ease it, trump it, maybe perform some kind of victory dance all over it. But throughout the weeks, I saw that writing didn’t really treat physical pain. Medicine treated the body, and therapy went deeper to treat the mind, but writing went deeper still, to treat something that had only the most vague and unsatisfying of names: soul, spirit, heart.
Now frankly, I’m not a fan of these slippery terms, but Spann believed that it was in these invisible regions of the self that serious illness took its most serious toll. Writing had to get deep in there to fix the hurt caused by cold encounters with medical professionals, insensitive friends and family, and the lasting effects of great pain and great fear.
As an example of the “literature of illness” or the “healing narrative,” Spann showed us a video on that first night of poet Lucille Clifton reading a piece about breast cancer: “I was in my 58th year when a thumb of ice stamped itself hard near my heart,” she read. “You have your own story. You know about the fear, the tears, the scar of disbelief.”
Spann, a tall, lean man with a benevolent smile and unflappable calm, asked us to think about Clifton’s poem and write for 10 minutes, and when he asked whether any of us would like to read, Janelle Robinson, sitting at one end of the table and looking like an aerobics instructor, was the first to accept his invitation.
Robinson, a 61-year-old with cute blond curls and a clingy T-shirt over her tiny, sculpted figure, smiled broadly at us, taking us all into her confidence. One eyebrow rose slightly higher than the other, giving her heart-shaped face an appropriately rakish expression. It was the only physical evidence of Robinson’s multiple mini-strokes. And underneath the protection of her little rib cage, Robinson was scarred by heart disease, a legacy that had passed from generation to generation of her family. A whole lifetime of healthy living had turned Robinson into a physical conundrum for doctors, who generally took one look at her weight training, vegan diet and multiple supplements and decided she was fine. It took them forever to notice that two of the arteries to her heart were almost entirely blocked.
Robinson began by announcing the title of her piece: “The Call of Death.”
“Does it ever stop?” she read. “The calls keep coming. … Why do I keep having to face these challenges? I wonder—when will the big one come? I thought I had gotten through it all, and I was on the healing path. A stroke, the two heart blockages, another stroke … devastation, fear, depression, acceptance, facing mortality. Writing the list—who should the kids call when I die?”
No one seemed to move as Robinson finished reading. Spann let the hush stretch over the room. I searched for something positive to say about such sad prose. It’s a writers group, I reminded myself, not group therapy.
As people responded, Spann asked them not to address Robinson directly but to talk in the third person about “the writer.” By doing so, we protected her a little, even from our empathy.
A woman said she heard a staccato rhythm in the words, as if the writer were writing in the same frantic rhythm with which she walked a treadmill. Another said she heard the writer “enduring.” And with that word, people laughed gently. They’d all practiced endurance.
Judy Stokes, sitting to Robinson’s right, was the next writer to volunteer. Stokes was a natural storyteller who would delight us over and over again with intimate narratives about growing older gracefully, but she began the workshop with none of that. The polite vagueness that usually softens discussions of serious illness was totally absent. Like Robinson, Stokes let us have it.
“Yes, Lucille,” Stokes began, addressing the poet directly, “I know all about it. I lay shivering, too. Two times—two images come to mind from my 50th year.
“Lying in the hospital—catheter still in my femoral artery—surgery successful. The blocked artery pushed open. When, for a moment, my heart faltered. I was sinking, sinking—the world moving farther away as I said weakly to the nurse, ‘I don’t feel very well,’ and she noted the dropping heart rate and blood pressure on the monitor.
“Atropine administered, I rallied back. But I had felt my own mortal body and what it might be like to drift off—to stop living, beating, breathing.
“I lay shivering months later, on the couch of a [marriage and family counselor] who guides people facing illness. I had begun crying and could not stop. She encouraged it, actually, that I should release the fear and the sadness, lie down and grieve.
“But it was such a dark place, so deep. Deeper than I imagined—a place cracked open by the sudden loss of control—of my fate, of my health, of my illusion of eternal youth. I lay there in my mortal body and cried—guided by this young woman, paid to care about me.
“I have talked about my heart disease—on TV even—but mostly in a cheery ‘watch your diet’ kind of way.
“It’s so hard to admit you are human.”
This time, the resulting silence made me hold my breath with anxiety. By the end of the night, I was silently reassuring myself that I didn’t have to come back if I didn’t want to. Article, shmarticle. This was too heavy, too depressing.
Spann seemed to have just the opposite response: “The honesty of a piece like this stuns me,” he said at one point, his brows knit together, amazed and seemingly humbled by what he’d heard. “It tumbled and rolled and rippled,” he said after another piece, his own soft vocal tones luxuriating over the words. Everything he said was full of appreciation. “Thank you,” he whispered. “Thank you.”
Apparently, Spann and the other writers, many of whom shared the same painful and frightening experiences, were relieved to hear such memories so honestly related.
One participant who’d attended previous Sutterwriters workshops looked around the room gratefully: “It feels like we’ve never been away. We’ve always been here at the table.”
Spann, who was pursuing a doctorate in philosophy from the Union Institute in Creative Writing with an emphasis in medical humanities, had big dreams for the Sutterwriters project. He envisioned it spreading from hospital to hospital, offering patients the kind of attentive care that medical professionals no longer had time to administer. To Spann, these workshops were the future of medical science.
There was even data to back up his theory that writing improved health. In one study, University of Texas psychologist Dr. James Pennebaker had shown that college students who wrote for three days about traumas made significantly fewer trips to their health clinics during the next four months. Other scientists had picked up from there, noting a significant physical improvement when patients with rheumatoid arthritis or asthma wrote about the traumas of their lives.
After knocking on countless doors, Spann finally found Margaret Mette, an administrator at Sutter Hospital who gave him the space and the support to try an experiment of his own. The Sutterwriters now contribute to a growing body of literature dedicated to illness. Once you look for it, as Spann has done, such literature pops up everywhere.
For instance, poet Franz Wright’s “Thanks Prayer at the Cove” begins with these lines:
A year ago today
I was unable to speak
one syntactically coherent
thought let alone write it down: today
in this dear and absurdly allegorical place
by your grace
I am here
and not in that graveyard, its skyline
visible now from the November
And here’s Stephen King, from his book On Writing: A Memoir of the Craft: “The first writing session lasted an hour and 40 minutes, by far the longest period I’d spent sitting upright since being struck by Smith’s van. When it was over, I was dripping with sweat and almost too exhausted to sit up straight in my wheelchair. … Writing didn’t save my life—Dr. David Brown’s skill and my wife’s loving care did that—but it has continued to do what it always has done: It makes my life a brighter and more pleasant place.”
These pieces were poetry, an intimate narrative, a salve to some readers, but for Spann, they were road maps. Spann sat around the table writing with the rest of us, reading with the rest of us and passing on insights from his mentor, Schneider. “The language up out of your memories is beautiful,” Schneider had said in a documentary on her Amherst group, so we were encouraged to write without censoring. We protect each other by talking about the writing, Schneider had said, so Spann kept us focused on the writing.
His favorite Schneider line was actually from a poem by Tess Gallagher, but it fit the mood of the workshop so well that it had become the title of the documentary, as well: “Tell me something I can’t forget.”
Lines like “Who should the kids call when I die?” and “This young woman, paid to care about me” and “I have talked about my heart disease—on TV even—but mostly in a cheery ‘watch your diet’ kind of way” were the lines we Sutterwriters wouldn’t forget. We repeated them to each other, making up a new kind of poetry specific to this secret society.
But I kept wondering whether this really counted as “healing.”
I had to get back into the role of reporter to find out because during the first few classes, I rarely read aloud. I told myself that we were always pressed for time and that those who were truly ill needed the attention. Mainly, I was chicken.
Joanna Luce, a quiet redhead who usually responded to writers with one cautiously constructed line while I fell all over myself with a lot of “Do you know what I mean?” sorts of comments, was willing to explain to me what two workshops with Spann had done for her.
Luce came to the workshop after going into surgery to have a portion of her thyroid removed, tired of what she characterized as “an eternal case of PMS on steroids.” In the workshop’s third week, Luce wrote about what it was like to go to sleep a thyroid patient and wake up to find that she was a recovering cancer patient. The two cancerous tumors had surprised even her surgeons.
“We discuss my cancer as if it’s a bad case of the flu,” Luce read. “I am like a dying battery. … This is incidental cancer?”
Luce’s bewilderment was almost humorous, her writing punctuated by strings of hardly understandable medical jargon.
As she later sat over coffee, Luce kept her face still, her voice unmodulated, as if she were conserving her energy. What Spann’s workshop had done for her, she said, was open up a dialogue between herself and herself.
“I told this physician in December, I go, ‘How do you open up to others if you can’t open up to yourself?’”
Luce was now writing clearly and in great detail, and often poetically, about things she’d never been able to think about safely, much less share with others.
“For a long time,” she said, “I thought it would be easier to go to a vet because vets deal with patients who don’t talk.” She laughed apologetically. “I don’t talk.”
Her illness, in fact, had begun to take a back seat to issues of relationships and family. It was as if Luce had dealt with the trauma of disease and had been freed to heal other parts of her life. Writing was an enormous part of that.
“It’s like I’m not dwelling on the illness anymore,” she said. “It’s a fact of life. I have to do routine blood work. I’m going to have to do scans periodically, possibly. I have to take meds. It’s a fact of life. I’ve been able to move on.”
In a piece called “I know,” Luce spilled out the thoughts that were now crowding her inner dialogue. Here are a few of my favorite lines:
To finish a piece like this is to stop
growing and learning …
I have friends and family who care
I am not always responsive to their love
I want to heal
I am like a skittish moth trying to land
on a hot light bulb …
I am an intelligent woman
I can act with great stupidity
I need to make time to breathe
I am writing to save my life
Like Luce, Kent Schumaker swears that the value of the writing workshop is in the emotional release, the writing of the truth.
One of only a few men in the class, Schumaker was trim, with a serious face, almost stiff even when relaxed, his deep voice tinged with an apologetic tone. The first piece I remember him reading was during the second week.
Spann had covered a tabletop with objects: Barbie dolls and prayers and keys and toys—anything that might elicit memory. Schumaker picked up a small tube of superglue and wrote about how his tear ducts had been sealed with the stuff since he was a child.
“Why was I taught that big boys don’t cry?” he asked. He rushed the line as if he’d whispered “big boys don’t cry” to himself so many times that it had begun to sound like one word. Throughout the piece, Schumaker read as if it hurt him just slightly, and then he accepted our compliments with a curt nod of the head.
Later, I met Schumaker at his home, where he’d tacked up pieces of writing that reminded him to kick out negative thoughts and dwell on the positive.
He pointed at one of them and said that it was a hard one for him to say out loud. The affirmation read: “I am attractive.”
Schumaker had suffered epilepsy from a very young age, and though most of the seizures had been mild, it had gone many years without diagnosis or treatment. A surgery removing part of a tumor finally led to a turnaround, along with treatments for depression and anxiety. But surgery only removed the physical symptoms. Like Luce, Schumaker credits Spann’s workshop with healing emotional pain.
“It’s a comfortable, welcoming place to release my problems,” he said, sitting at his dining table with a ring binder full of poems and short essays he’d written.
That afternoon, Schumaker seemed reluctant to think about problems. He was excited about leaving a welding career for a gerontology degree from American River College. He was passionate about Spann’s class and was hoping to extend it past six weeks.
“Physically, I’m aging, and I know it,” said Schumaker with a delight he rarely exhibited in class. “Mentally, I feel like a kid … whereas I used to be going, ‘You can’t do it. Let someone else do it, Kent. You’ll make a mistake.’”
At the last meeting, Schumaker, who always participated but rarely led off, volunteered to read first. He pulled out a prop, a ski cap in yellow and red that he smoothed out ceremoniously before bending over his pages.
“My mother gave me this beanie cap,” Schumaker read. “I don’t remember when or why. Red and yellow, and ‘Kent’ in black capitalized lettering—on both sides no less!” Schumaker’s seriousness began to melt, exposing a rebellious sense of humor. “All the yarn nicely knit and, to hit the spot, a yarn ball on top—one side yellow and the other red. … I know she meant well,” he told us. “She’s a loving mother, but I can’t wear this stupid thing on my head!” Light, appreciative laughter. “I see it as a punishment,” Schumaker continued. “To me, I see it as a flashing light warning everyone to keep their distance. … Even though I can’t wear the damn thing, I can’t throw it away either!”
This masking of things that were painful with a voice that swore they were funny was an art we all were practicing, but Schumaker went even deeper. A man sitting across from him admired the ball on top of Schumaker’s cap, admired playfully the hot colors and even threatened to steal it. Gently, he dared Schumaker to try it on.
Schumaker smiled shyly while he bent down and pulled the cap over his head, letting it sit there at a goofy tilt. Then he lifted up his chin and let us all look at a man who’d decided to have a little fun with himself. It didn’t warn us to keep our distance. It brought us closer to him.
It was Schumaker who helped push the idea of an advanced workshop. After filling his binder with writings, he wanted to keep working together, keep digging deeper and free up our seats in the regular workshops so that Spann could train a new crop of writers.
Spann agreed to meet with us once a month, and from that point on, we became the Advanced Sutterwriters group—thanks in large part to Schumaker.
So, on the seventh night, Spann tried something he considered risky. He gave us a few minutes to write down five taboos, things that had been unacceptable our whole lives.
Up on the wall they went, and some of them inspired sighs of recognition: “Getting into food,” said Connie Gutowsky, drawing out the last word luxuriously. Some of the women sighed.
Gutowsky was a bright, retired public defender who always came to class immaculately dressed, her gray hair in soft waves, her knuckles swollen with arthritis.
Though Gutowsky said that writing didn’t help her physical symptoms, the workshop had led to profound changes in her life, though by a circuitous route.
In a long conversation over coffee, Gutowsky said that she’d read the scientific research; she knew that others with rheumatoid arthritis had physically improved after writing. She’d joined all four of Spann’s workshops, and she’d expected results. Still, her pain didn’t decrease.
I was surprised by her perseverance. Why keep coming if writing wasn’t really helping? Gutowsky looked at me a little blankly.
A couple days after our conversation, I got an e-mail. She’d forgotten to tell me something key, she said, a story of what happened when writing failed to help her.
Because of severe arthritis, she’d been unable to travel for years, Gutowsky confided, and yet her husband persisted in dreaming that he would one day whisk her away to Europe on vacation.
After reading that those with rheumatoid arthritis suffered less physical pain after writing about traumas, Gutowsky joined Spann’s workshop. As she’d said before, writing did nothing to ease her physical pain. But it did give voice to her deep disappointment. Partly because of the writing, Gutowsky accepted that she was depressed enough to take a step she’d never allowed herself to consider before. She told her doctor she was willing to try antidepressants, a choice that signaled failure to Gutowsky but led to tremendous improvements in her emotional well-being.
“Maybe it was false pride,” she said during our second interview, still looking a little sad, “but I’d thought I should be able to handle anything on my own.”
“Did it help the physical symptoms?” I asked her.
Gutowsky rubbed her hands absentmindedly. “It did,” she said.
Finding an antidepressant that worked for her was a way of handling things on her own, I said. To me, the fact that Gutowsky and her husband recently returned from a grand tour of Europe proved that she’d made the right decision.
We couldn’t say, of course, that Spann’s workshop had cured Gutowsky’s rheumatoid arthritis. We couldn’t even say it was responsible for the reduced pain, but there was a connection. In fact, if Gutowsky had been a member of one of those medical studies, on paper, her circuitous route toward improved mental and physical health would seem to be a direct result of the workshop. Before writing, Gutowsky had been unable to travel. After writing, she was jet-setting around the world. There was a link. Gutowsky and I believe there really was a link.
Spann admitted privately that Gutowsky probably could run her own group, she knew the process so well. On that seventh night, he wrote “getting into food,” near the top of the list of taboos. Then, he added others that we called out to him: deviating from the norm, getting fat, expressing anger, the word “cancer,” questioning your country, nudity. Even “marital bliss” was on the list. So were adultery, bodily functions, falsies and masturbation. Everything went on the list. And then Spann gave us 10 minutes.
I looked at that board and saw all the shame behind those words. It reminded me of a taboo I had broken once. It didn’t appear to be health-related, but as Gutowsky proved, some things were related even when it seemed as though they were not.
I wrote about a writing professor who’d once challenged his students to write about a sensual experience using only sensory description. That kind of writing, my professor pointed out, can make a reader feel like he’s there with you. Considering myself brave, I’d written about sex. Not only had I written about sex, but I’d written about sex when everyone else had written about safe stuff like petting cats and walking on river rocks, but I didn’t know that until the professor insisted we read aloud. Mortified by my own impropriety, my cheeks burning, I croaked through seemingly endless descriptions of my partner and myself, deeply ashamed as I described sights, smells and sounds in minute, pornographic detail. Nothing could have put me at a greater distance from the seemingly normal, healthy group of students who wrote about things one could proudly read about in public.
“I never had another single conversation with any member of that class,” I wrote, sitting in the Sutter research library.
Spann asked if anyone would like to read, and I couldn’t believe the feeling of déjà vu. Was I really going to confess a gaffe that had been haunting me for going on 15 years?
Well, I told myself, Schumaker had put on that beanie cap.
I read the piece out loud, shaking just as hard as I had all those years ago.
“Five pages of straight up, pornographic smut,” I read. And then I listened, drenched in relief, to the laughter. As I finished, the woman across the table from me raised her hand.
“I want to talk to you afterward, girlfriend!” she said, and we slapped hands in solidarity over the middle of the table.
I remember the swell of positive comments. Gutowsky praised my courage, Stokes my wit. One woman said she wished she’d been there to hear the five pages of smut. I laughed a lot, almost hysterical with relief.
So, this is what it feels like to rid yourself of something that hurts by confessing it to a room full of people who’ve confessed to you for weeks, I thought.
But is that really healing?
Well, for 15 years, the memory of making a fool of myself in front of a bunch of prissy grad students had been truly painful, and now, after writing about it just once, it didn’t hurt anymore.
Spann said that he often received e-mails from people in our group who felt, the morning after, as though they’d said too much, confessed too much. But more often, it seemed, we wrote him grateful e-mails. As the Advanced Sutterwriters group headed into its third month together, Spann quoted one of these e-mails in a draft of his dissertation: “In group now, I find myself peering hard at others, more curious about them and about what they write. What astonishes me is that hearing what they read is as rich for me as writing/reading myself. Last night’s themes were so similar. I am left with a sense that in another time and place, we would have been gathered around a fire, painting our bodies, chanting, drumming, performing some sacred healing ritual. That is how last night felt to me. Collective. As though we are all dipping our brushes into the same paint.”
The following short pieces were provided by members of the Sutterwriters group.
Two chairs in life
I see two chairs working on their tan in the golden hills of California.
I see the chairs represent a mother and daughter discussing marriage and children in her short future.
I see the chairs represent a father and son talking of responsibility using sports metaphors.
I see the chairs represent two old friends discussing times shared and times to look forward to the future.
I see the chairs represent a couple married for decades discussing what a good life they lived.
I see the chairs represent tranquility.
I see the chairs represent life.
Old lady sweater holder. Dotted with rhinestones. Thrift shops are full of these artifacts of another era—artifacts of women of another era.
Young girls came to buy them—but what do they know of the old ladies, really? Do they have any idea that they, too, will become one? That their youth and their glamour and their fashion will become an artifact, too?
I bought a necklace of sorts recently—designed to hold my eyeglasses around my neck. It is very hip—black cord, silver beads—an aging boomer version of the old librarians’ glasses-on-a-string look.
I am wobbling at the juncture between my own youth and my old-ladyhood—trying to move gracefully from one state to the next.
And I needed my glasses nearby—can’t read the small print anymore without them, so what are you going to do?
I bought a few extra necklaces as gifts, for when my sister needs her glasses close by—when the two of us are old ladies ourselves, at last.
Must we lose what we love to know how much we love it?
Must we lose what we love to know how much we love it? Some things, probably, or I’d spend my entire day in love.
My ankles are gone now, and I didn’t know how much I loved them. My father is gone, and one brother, but I knew always that I loved them both, each, on a par with life itself. My youth is gone, but I’m still here, and I knew youth couldn’t last forever.
I’m grateful for eyesight and hearing—a brain that still directs my heart and lungs, my perception and things.
I’ll answer this question with the word YES, a qualified YES. I’ll answer this question with the word NO, a qualified NO.
Like the weather and the seasons, loss is part of something big. I’ll lose my life, for example, but LIFE itself is not lost.
I’ve lost my ankles, and while I do miss them, I try to say, “I move through life pain-free” and not be concerned about the truthfulness or accuracy in the statement, the small perspective. It’s relative, isn’t it?
The very question brings appreciation. Maybe I’ll be mindful to love what is lost and what remains, to notice what is. Maybe …