Posted Sept. 2024 | Psychology Today
I take my five-year-old daughter Jessie to a Halloween haunted house. She runs up the stairs of the old Victorian mansion, sweeping fake spiderwebs out of her path, to see what scary tricks are waiting for her. I could follow her, but I’m more interested in the palm reader woman who is sitting in the lobby. I don’t believe in palm reading or astrology or Tarot cards, but I don’t have anything else to do while I wait for Jessie to return, so I sit down in the chair in front of the palm reader and offer her my hands.
She holds them gently and studies them. “You,” she smiles as she begins to speak, “are a very special person, an unusual person.”
I like hearing this, of course, because I like to think that I’m special. She continues: “Your hand says that you’re a survivor. I see all kinds of danger in your hands.” She runs a finger across some lines in my palm. “I see accidents and illnesses with the potential to kill. You’ve had a lot of close calls.”
I’m startled by the truth of her words. I’m intrigued but I tell myself that this woman probably says similar things to everyone, no matter how that person’s hands look.
“Doesn’t everyone have some close calls in their lives?” I ask her.
“No,” she says, “Not like yours. And I see more close calls coming for you.”
I must look alarmed because she adds, “Don’t worry; you’ll survive. That’s how you’re special: You’re a survivor.” Then she adds, “Were you ill in the recent past, with something no one could identify?”
“Yes, but I’m okay now.”
“Hmm, you’re okay for now, you mean?”
“This gives me a chill. “No! I recovered.”
“Maybe not all the way? No worries. You’re a survivor. Remember that.”
Jessie runs down the stairs carrying a bag of Halloween candy that she will eat slowly, bit by bit, over the next week. I leave the haunted mansion with thoughts I’ll return to over and over all week. Am I really well? Or, is that nightmare illness going to come back? The palm reader said I’m a survivor Am I? I don’t always feel like a survivor, but maybe I am.
It's true that I’ve had a lot of close calls. When I was a kid, I needed stitches at least four times and had a couple mild concussions. I fell into a lake when I was four and nearly drowned. I broke my nose when I was twelve. I was in a bad car accident when I was twenty and walked away with only bruises on my knees and hands. I got tear gassed during an antiwar demonstration in Madison, Wisconsin. I’ve had breast biopsies three times, but every time the results were negative. I crashed my motorcycle on a slippery snowy road when I was twenty-three and again needed stitches, but I wasn’t run over by a passing car; I could have been. Then there was my marriage to a verbally abusive man. I walked out of that marriage when Jessie was just one year old, walked out without a safety net, by which I mean, not much money.
I walked out and immediately fell ill. I was ill for two whole years. At first, I thought it was a cold that would run its course as colds do. My throat hurt. I was terribly tired with a weirdly crushing fatigue that no amount of sleep alleviated, A rash appeared on my arms and belly. I thought it was spider bites. It wasn’t. It came and went with intermittent low fevers.
I felt like my body was playing cruel games on me. One day I would wake up feeling fine, relieved to finally be well. Then the next day I’d wake up just as sick as ever, if not more so. The illness was constantly on my mind, and I didn't know if my preoccupation with it was an over-reaction or a reasonable concern.
I didn’t tell anyone, not even friends, that I was sick, not that first year. For one thing I didn’t want my ex- to have grounds to sue me for custody of our daughter. And I felt like maybe if I didn’t acknowledge that I was sick, it wouldn’t be real.
I couldn’t afford to be sick. I was a self-employed psychotherapist. No therapy sessions=no income. Plus my daughter needed me. There was simply no room in my life for illness.
I pushed myself to do everything I’d been doing when I was well, even when it was hard, and it was nearly always hard. I saw my clients; I swam in the community pool. I took dance lessons. I took care of Jessie. I functioned, barely.
Often after I’d settled baby Jessie in her crib at night and slid into my own bed to read, I’d fall apart and cry. I have cancer, I’d tell myself, I’m dying.
Eventually when the illness showed no sign of going away, I went to the medical section of a University library near where I lived and scared myself silly by reading all the terrible things my symptoms might add up to. I thought it might be Kaposi sarcoma, a terminal cancer that people with AIDS develop.
Finally I started seeing doctors. The first two told me I was sick from the stress of leaving my marriage. I should relax. They were so wrong. My marriage had been stressful; leaving had been a huge relief.
Another doc thought my symptoms were allergies. He tested me and started me on allergy shots. Finally one doctor listened to my whole story for a tearful half hour and ran tests that the other doctors hadn’t. Her conclusion: “This is definitely not stress. You are very ill, but I can’t say why.” Because she couldn’t think of anything else to do, she tested me for hypoglycemia, low blood sugar, and I tested positive. She put me on a no-sugar diet, which made me feel better, but didn’t make me well.
Toward the end of the second year of the illness, I developed canker sores inside my mouth and down my throat. I couldn’t swallow. My allergy doctor diagnosed it as herpetic stomatitis and prescribed a weekend of rest. He told me to go somewhere alone, leave the baby with her dad, and spend a weekend resting and sleeping. No more trying to push through the fatigue. I loved the idea. I went to a resort in northern Wisconsin, that had a restaurant (where I managed to eat after spraying my mouth with lidocaine) and a swimming pool and sauna. I swam; I steamed in the sauna, but I spent most of my time lying in bed reading about alternative ways to heal. I practiced using images of myself jumping rope in a bubble of golden light. I told myself over and over that I was getting well. I read Norman Cousins’ book, “Anatomy of an Illness: As Perceived by the Patient,” about how he healed himself from his own mysterious illness by taking huge doses of vitamin C and watching funny movies. I went for a nude swim on a nearby beach, at sunrise, and pictured the residue of my bad marriage dissolving into Lake Michigan. Good-bye, good-bye.
When I returned home, my mouth and throat and spirit feeling better, I started taking 5000 milligrams of vitamin C daily (like Cousins did). I continued to rest whenever possible, and I strictly followed the hypoglycemic diet that the doctor had prescribed.
Slowly I got well. First just a few days of feeling normal, then more days, then more, until I realized it was over. I ‘d survived. Somehow, I’d survived. I didn’t have a name for what it was or an understanding of how I’d survived it, but I had.
Addendum: I nearly forgot the illness, until 1990 when the symptoms returned, as the palm reader had predicted, but much worse. I spent a summer hospitalized and almost died. Once again I survived. And still I didn’t know its name.
In 1997, I survived yet another scary episode of my mystery illness and finally got my diagnosis at Cleveland Clinic. Adult-onset Stills Disease. A very rare auto-inflammatory disease.
The closest of all my many call close calls has turned out to be this one, repeatedly surviving Stills disease. I guess the palm reader was right. I am a survivor, at least for now.
A shorter version of this blog appears on Psychology Today’s blog page
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