Recently I co-led a writing workshop for people dealing with chronic illness.
We were responding on the page to a Raymond Carver poem, “What the Doctor Said,” that opens with the physician telling the narrator, “It doesn’t look good/ it looks bad in fact real bad.”
Everyone in the group had heard similar news.
I wrote about the first visit I made to the gastroenterologist. He looked at me, stony-faced, and said, “You’re going to have this disease for the rest of your life, and there is no cure.”
Never miss a local story.
I didn’t go back to him. I found a new doctor who I was sure would say something different. But no, he delivered the same gloomy diagnosis only in a more gentle tone, as though I were a distraught schoolgirl.
I simply couldn’t fathom what the doctors were telling me – me, a never-sick athlete from sturdy stock, who had suffered nothing worse than the occasional case of poison ivy.
I had a life threatening disease?
But I also couldn’t ignore the devastating symptoms: incontinence, anemia, cramping, fatigue, pneumonia, hospital stays, a more and more circumscribed life. Even walking the dog around the block became too risky. I might not make it.
“How do you stay so thin?” friends would ask. I was too mortified to tell them the truth. My symptoms were definitely not, as my mother would say, “table talk.” Only my husband understood the full, gritty truth. The shame of not being perfect, of feeling vulnerable, pitiable, silenced me.
I had two young daughters and knew every public bathroom in town, even some that were off-limits. To volunteer in my girls’ school I wouldn’t eat for a day, hoping I could get through without a humiliating accident. I wrote a children’s book, “Toilets All Over Town” but was too embarrassed to submit it anywhere.
Jump ahead two-plus decades. I learned yesterday about a body builder in England who had to stop working out because ulcerative colitis left him too weak and sick. He had surgery and his doctors warned him not to train again – he might develop complications. But he was determined. And now he’s a male fitness model who proudly poses, his ostomy bag in full view along with his six-pack abs and sculpted biceps.
I also read about several famous female models who allow photos of themselves in bikinis, wearing their ostomy bags, and celebrities who have come forward admitting they have chronic diseases. I know we are a culture that often “over shares.” On the other hand I agree with the mantra: we are only as sick as our secrets.
Many in the writing group last winter had never before disclosed to a public larger than their immediate families that they suffered from an illness. At the end of the eight-week session, we gave a reading at Flyleaf, open to the public. And participants shared some of their deep secrets about their health, their fears for their well being, their forever-altered views on life and death.
So did I.
I wrote about how I finally entered a double blind trial and found a fourth doctor here at UNC who gave me hope. Two surgeries later, I now have what my sister calls a semi-colon, an internal pouch, and I no longer have the disease. But my crisscrossed scarred belly, abdominal rumblings, and other “not-table-talk” concerns remind me, every day, that my body is not like other people’s. No, I can’t take long hikes or teach in Africa, and, please, may I have the room with the private bath? I am not afraid to tell you why.
Later, in the Carver poem the doctor asks the patient, “Do you kneel down/in forest groves and let yourself ask for help?”
“Yes,” I can now say. “Yes. I do.”
Carol Henderson is a writer and teacher. Contact her at email@example.com