When healing is the target
Illness is the bow.
What is a bow but a device for the
transfer of energy?
Likewise an illness.

— Haven Trevino

Soon after Steve Johnson moved from Brooklyn to Beaufort, a 300-year-old village on the South Carolina coast, he and his wife Josefina Blanc showed up for a meeting of some sort at the arts council where I worked. I remember reacting to the first sight of them—who are they? They were exotic and tall and had their small boy tucked between them. They were young and interested in community. All this, in Beaufort, is a gift.

Eight years later, Josefina runs a charter school in the historic district and Steve is an adviser at the local technical college, which is growing nicely and serves young people who made it through the surrounding rural, systemic poverty. He paints and writes, shows and reads his work, and turns up for other artists’ shows. He’s a performance artist.

Steve got a serious heart diagnosis as a child, but had no issues for those first eight years in Beaufort—recuperation is blissful: swelling abates, the mind clears, wounds close.

I got my own diagnosis in early 2014, soon before Steve’s recurrence, two weeks after my Obamacare kicked in after 14 years without insurance. Legislative reform, in South Carolina, is also a gift when every minute diagnoses are handed out à la Oprah—you get a problem, you get a problem, and you get a problem! Now, Steve retains his job only through the graces of the Family and Medical Leave Act; he’d been full time for six days longer than the required minimum of 365.

This story is about two patients during a year of fortune, dismay, communication, and art. And this is the story of one artist’s ability to speak his mellow mind.

Steve was born during a rare earthquake in Kansas City in 1968. In his 10 years of artmanship in Brooklyn, he lived in a 10,000 square foot communal space. He’s still connected with that artist collective, The Fantastic Nobodies, who merge conceptual art and poetry into provocative performance theatre. There is nothing that big or capacious in Beaufort, not unless you count the vast salt marshes and wide, brackish rivers with leaping dolphins and shrimp, and the long tree-canopied roads, bald eagle nests, and leatherback sea turtles that weigh a thousand pounds.

At a springtime party at a friend’s beach house just before his new diagnosis, Steve arrived with his family and sprawled out in the reading nook and slept some of the time. He didn’t look well, and I was hiding my illness. I was still trying to understand it myself, and I didn’t want certain people, most people in fact, to know—I was already dealing with reactions to being fired from my arts council job for saying no to the new board president’s bad ideas.

Nos and bad ideas have a certain usefulness though. Getting them out of the way is a step in some direction.
~

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“Turn it up, I’m still here,” Steve was in the operating room, still conscious. The anesthesiologist asked him questions—Is Steve your middle name—“like an executioner. Weird questions,” he said.

Medical people are clinical in a good way. This is their everyday job; detachment is how they most help other people. Their profession is the best good idea mankind has come up with.

Steve described the surgery—he’s had five—as performance art: the anesthesiologist is the warm up band, there’s lighting, nurses milling around, three over in the corner texting. “The stars don’t come in until you’re out,” he said, referring to the surgeons, “then it’s showtime, a strange kind of theater of the absurd with how busy they are.”

No matter where you sit the view is partial. Omniscience is a wish.

When you’re in the audience, giving your attention to a dancing-acting-painting-gesturing-staring-whatevering artist, you are giving them the chance to learn and succeed. They can’t do this without you. It’s the same when you’re a patient, when

Finally, at the time of surgery, the surgeon has the opportunity to be a performing artist. He or she draws on intellectual resources, including knowledge of anatomy, physiology, and surgical pathology, and applies this in a creative way to the problem at hand, prepared at all times to change course or even invent a new operating if the need arises. The privilege of participating in this tactile, intellectual, and creative enterprise, to be an explorer in the fascinating natural world … and to wonder at the endless variation of the effects of disease processes on tissues, all in the context of helping patients, is a powerful thing indeed.

— Orbital Surgery: A Conceptual Approach by Jack Rootman, Bruce Stewart, Robert Alan Goldberg

And medical performance is taught like dance—physically by watching and doing and rehearsing. In bodily clutches doctors are corporeal levers; arms twist to the shoulder for the right angles.

A gavotte: the patient lies in the hospital bed with a bandage taped over a long abdominal incision that has been stapled shut. The team of matinal residents and students arrive. The chief resident is baby-faced but in his fifth and final year. He’s there because he’s a talented brainiac who enjoys his job. The patient pulls up the gown so they can see, the chief resident is talking to his underlings, those shiny apples, and he reaches over and zips the bandage off—in one fast pull he enacts the patient’s favorite metaphor.

~

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One treatment leads to more.

“It’s a good word, practice,” Steve says.

Soon after the beach party, I was going through where-are-we-now diagnostics when I spotted Steve in a newsletter from our local farmer’s market. He was pictured sitting with family and friends at a picnic table. He looked good in his straw boater hat, perhaps an advantage of growing up the Midwest with all those fields and fairs. Perhaps he is drawn to art crowds and colleges and farmers markets as a safety in numbers thing, like doctors learning from the doctors before; like every patient poised to benefit from the documented, dissected care given to others before them.

These glimpses of Steve interested me, but I didn’t talk with him until the end of this story of 2014— a year when the only chronological orderliness I had was that of sterile procedures. Steve came over to my house so we could speak more privately. He wore a blue oxford shirt and big, tobacco-brown, wide wale corduroy trousers. He carried a shoulder bag about to spill papers and books. He immediately chose a rickety rocking chair, sat back, set out his bottle of water, and proceeded to speak calmly, factually, reporting his point of view almost symptom-like. (Or have I, or have we, spent too much time in exam rooms?)

“There are a lot of different aspects to being an artist,” he said. Though we sat next to the dining room table, we ignored all the food my husband had cooked (at some point in our conversation, we agree that caregivers have it tough, too). “It’s not huge output, it’s how you get up and deal with the day, see the world.”

When he took the job at the technical college, Steve transferred much of his energy to creating culture: “If these students are there, what is it that they’ll be taking away? Just going to class and work only is a bad experience. There should be bands and plays and a student union. I’m there in a cubicle, which is a terrible activity for human beings. Should I sit there if students aren’t even coming in?” Instead of sitting, he goes out, and he’s been painting on campus. People are interested: “students see that there’s another mechanism in my head.”

His job at the college is to discuss academic, personal, and job aspirations. “I go to my studio at night, but when going into something serious like surgery, I’m a different person, it’s hard to think about painting.”

~

At a Fourth of July party at a friend’s river house, Steve arrived with his family, still didn’t look well, twisted his ankle, and left. I was still hiding, iatrically, dealing with back pain, and building up to a pre-surgery freak out. At home, all I could draw was stick-figure arrows, measly thin lines on the page, so I got up and pulled back my bow and sent the arrows into the sun-bleached target in my back yard and thought about the precision of my surgeon, a man who is so thorough an expert he even uses volume, who talked over me when (and only when) I didn’t know what to say other than clichés, who hollers instructions out the doorway, and who informed me that he couldn’t tell me exactly which procedure or what outcome because he’d have to decide during the operation—because improv.

Before his own surgery, Steve destroyed a lot of his work: “I strapped a pile of paintings to the top of my car and took them to the dump on St. Helena Island with Andalu,” his son.

Steve had just lost his mother—to an accident and unsuccessful surgery—who’d collected a whole lot of stuff in her home, and that scared him. He was also dealing with his life insurance and living will.

“It’s hard to be a caretaker of your own work. Should I rent a place to store and hoard? Not interested. I’m into being here now talking to you,” he said the night we finally spoke at my house. “I could have given one to my sister, one for Andalu, maybe it would’ve helped pay for college. The dump made a lot of difference.”

It was a show of strength, a way of talking over the mish-mash overload of unhelpful heaviness.

Lightness is good—it is what makes the arrow fly. Change is good. It is what the target measures.

“Change,” Steve agreed, “and being able to have the courage to embrace it, those are the people I want to be around. I’m about being local—” he was referring to the smallness of the town we live in—“but there’s room for ideas. Ideas are malleable, they don’t hurt anyone, it’s OK to get ideas out. There’s so much room for it here.” He’d gotten copies of the site plan of his school, he was pushing for collaboration with the CAD classes, and for a new net on the volleyball court. He explained to students that they can draw outside “even if you’re not taking art, and if you like biking, find out who else does, there’s a new trail right behind the college.”

(Refrain: infrastructure and awareness are a gift!)

“If I’m going to be effective, then being involved with people is the art I’m interested in, every experience is richer when you share it,” Steve said, clearly, mellowly, still sitting back in the rocking chair that has been holding bodies for a century. “Contributing as an artist is less about my take on art than being a vehicle for students to express themselves. There is art speak, like ‘juxtapose,’ that has always troubled me about the art world. How does it relate to a kid from Battery Creek?” he asks, about a local high school in the Gullah community. “I’m asking them what do you want from this experience so they can take control of their own lives.”

~

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I bought beef bones at the farmer’s market that summer, to make bone broth after reading that some pro basketball player had used them to recuperate. But I got really sick of them quickly, and thought Steve might need a culinary experiment to keep him occupied at home instead of going to parties. But by then he was already grounded anyway— his fall on the Fourth of July resulted in CT scans, a diagnosis of an aneurysm, and a weekend stay in the ICU.

His surgeon from eight years before, Dr. S., totally coincidentally happened to be in town for a summer vacation, and Steve connected with him. Dr. S. remembered Josefina and Andalu too.

I went to yoga one last time before my surgery—people think about their own bodies there—and Steve sprawled out in the back of the studio. He didn’t get up for any pose, he groaned melodiously and sighed and mmm’d, and told me and a few other friends about having to take it easy. He said this with no drama and slight awkwardness, and I liked seeing him talk about his illness, sharing facts that many people have to deal with (illness is common, right?), being the performer to my obfuscator. He wore his plastic hospital bracelet like a talisman.

~

While talking from the rickety rocking chair at my house, Steve didn’t gesture very much. His wrists were elegant, poking out of his blue oxford shirt. Two hours passed quickly; we discussed taking control of your life, the way John Berger presents it in Ways of Seeing— applying art to your own life creates meaning.

Deriving meaning from patient input is a trend in the medical industry, “engagement” and “patient-centered outcomes” are key words, even in the legislation of Obama’s reform. The previous era is described as “paternalistic.” The medical profession moves and harbors and synergizes an incredible amount of information.

“I’m still trying to make sense of it,” Steve said, “Dialogue makes it real. We don’t have home visits from the doc with his black bag. We research vocabulary and statistics, learn about it all.”

PubMed is fabulous. Statistics are the doubtingest form of facts: don’t stare at them too long.

Consultations with doctors are brief and intense and stuck in those small exam rooms where conversation skills fall flat and prepared questions are puny and building trust in your doctor is like trying to build a campfire in the rain. It’s hard to express yourself fully as if esprit d’escalier is a hospital-acquired disease. And there’s no way for a doctor to cram years of know-how into a consultation. Or three consultations. But Steve needed more Be Here Now from his doctors so he texted with Dr. S. too, and he read me the texts from his phone like a script, a technologic back and forthness that is human contact and, most importantly, makes him feel a little better.

To Steve his medical situation is “a parallel universe. I get stuck in the wrong one for a while. Support is good, just hearing you’re going to be OK.” The right people are important— and Steve and I get to the point of sharing scars. I have two on my abdomen. Steve’s body shows surgical approaches to his heart from the arms and thighs, center chest, under one arm, and next, soon in a few more weeks, through his neck.

~

Steve pulls up his shirt and points to the long central scar, mostly faded. His skin is minutely freckled and his chest is lean.

“Dr. S is an artist, he added notches to the incision so it’s stronger,” he says. Having pride in your doctor is comforting.

Steve had his first procedures when he was 7 and 11 years old.

“Heart problems have affected me. At one time I wanted to go to outer space, but I’m not that interested any more,” he says this so plainly, about ambition and acquiescence, I feel proud of him. “It’s brought an awareness to me—” an understatement: it has shaped his capacity for communication, to be in the moment, to enjoy—“I don’t want to dwell. I did a project, Songs for the Temporary. We’re all passengers. It’s not a dark thing, it’s time to shine. I don’t want to be thought of as a patient, but to be of this moment.”

We discuss being a patient patient and how medical life can be secondary—“getting a hug, eating, and sleeping right is primary.”

~

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Five weeks after my surgery it was Labor Day weekend and my birthday and I was feeling pretty good—good enough to go get Indian food from the farmer’s market, but with the heat and humidity and the crowds I decided against any parties. Reticent still. In a reply-all email, about a get-together right down the street, Steve typed Hey I’m bringing my boat, let’s get out on the water.

I walked towards the kitchen, towards that styrofoam container of curried goodness, and fainted and had a geyser of a nosebleed. I remember thinking: The kitchen floor is not a good place for a nap. My hospital room had a view of the river and boaters.

Steve’s worst, most changeful medical situation was a bicycle accident-head injury-no insurance situation in his first year of living in New York. The trauma of debt changed his life—“I went underground with my trumpet.” He suffered from being financially damaged, lost his longtime girlfriend and credit. His head wasn’t clear, he was sick, trying to figure out again how to use his arms, a hard recovery combined with having to deal with creditors. “Being uninsured is destroying people. We can’t have so many people sick when we have the ability to take care of them,” he concluded, and those simple, practical words felt like a gift in my ears. (They are a gift for everywhere.)

Before the bike accident, he was an intensely prolific artist and builder.

“Now art objects are not so important,” he explained, “but instead relationships.
The accident changed my trajectory from art for art’s sake. The Fantastic Nobodies are about relationships. These guys are really in tune with art and perception. We used to go camping.”

Steve brought to the collective the approach of making art and life into one thing. He brought people together with food and conversation in his home, the 10,000 square foot space in Brooklyn. He built a theater and bar, fried bacon before events to make people hungry, created meaning and connections for audiences. Josefina gave birth to Andalu there.

“You don’t earn a lot of money doing metaphysical artwork,” Steve said, after a pause. Another pause: “Attitude is about the journey, being at your best. When you’re worried about surgery, you’re not at your best.”

Sitting there in the rocking chair at the end of our year, he was worried about the second, unexpected surgery he just found out about yesterday.

~

In November I was working and taking lots of prescription drugs. On election day, I stood in line with Josefina who was voting for the first time (she moved to the States from Chile), and I deflected her inquiry about my apparent health. I felt pretty good anyway—I wrote a first draft of my arts column faster than an IV infusion. I raced it. I wrote an article about Steve and his students, who put on a show at his studio. The student entrepreneurial club sold greeting cards made with one of my favorite pieces by Steve, a portrait of a strappy pair of sandals titled Angelica.

In January, when I’m starting to feel like I’m recovering, Steve has his surgery, the expected one.

“Creativity is what you bring to it,” Steve said, “it’s all around not just in galleries, have it all around you—not everything is art, but it is precious moments. Sounds cliché but when you’re really there, it’s not. It’s about being alive.” He’s working on a white paper and presentation about building cultural participation for a conference in Myrtle Beach. He’s doing cardio rehab at a local hospital where he’s connected with a nurse—“dialogue” he says again—and he’s been talking with another Beaufort artist who is also deep explorer of healing and life.

Finally, on a February night at a reception for a gallery show, my talk with Steve began.
South Carolina is gifted in wintertime parties. Steve looked peachy-cheeked and fresh. This was a first outing for him following the expected surgery. I was, as usual, deflecting inquiries from acquaintances as we drank wine and stood next to the chimeneas, but Steve walked into the garden and almost directly over to me and asked about what I’m working on and we got interrupted—that’s when I decided I wanted to talk. With him. A right person. I invited him over for dinner, and we talked and talked and didn’t eat. When that was enough, he stood up from the rocking chair, and looked at the counter full of food and asked about the bread. My husband wrapped the loaf for him, and Steve went home to his family.

Images courtesy of C. Steve Johnson.