I have a picture of me leaning off the edge of a cliff wearing a red-striped harness strapped over my gray track pants. In my gloved hands—right hand in front of me, left hand behind—I grip a rope. I am smiling gamely, because I am with friends, but I have made no bones about the fact that I am scared shitless.
It was the year before the illness struck. On a lark, my girlfriends and I had decided to give rappelling a try. Karen’s cute blue-eyed boyfriend was an experienced climber, and he agreed to be our guide and teacher.
The cliff was a mere thirty feet steep, but from where I stood the ground looked a long way away. I remember going down. It was a slow slide with a multitude of stops. There was not the freedom you see in the extreme sports movies, where the climbers push off and slide down, push off and then slide down, like spiders. No, I was more along the lines of a rappelling sloth. It wasn’t fun. I was too scared for it to be fun.
I didn’t go a second time. Once was enough, I figured. I’d gotten a taste. I could say I had rappelled off a cliff.
I think it’s fair to say that my life as a writer with a sometimes debilitating chronic illness is a lot like my one and only experience of rappelling down the bare face of a steep cliff: it’s slow going, a terrifying and arduous undertaking. Quite frequently, I feel stymied by my sloth-like progress.
When I was 21 years old, I came down with a case of mononucleosis which dragged into chronic fatigue syndrome (CFS), leaving me bedridden for the better part of fourteen years. The fatigue felled me. I couldn’t hold a book. Talking on the phone wiped me out. Walking a block to the corner store wrecked me. I took baths rather than stand in the shower. I stopped brushing my teeth at night.
It was as though my ship had sunk hundreds of miles from dry land and I had been cast adrift, the lone survivor of a terrible calamity. My bed was my lifeboat. I lay on it day after day as weak as a castaway wasting away for lack of food and water. I had read about chronic fatigue syndrome. I knew the prognosis. I was alone at sea, with little hope of rescue.
In 1972, eighteen rugby players survived three months high in the icy Andes mountains after their plane crashed and they were given up for dead. I am fascinated by their story, just as I am fascinated to read about the whalers who were lost at sea in The Heart of the Sea, and the Antarctic explorers of the ship Endurance,[i] who survived for months on a frozen island with no hope of rescue.
It all started in the early days of my illness, when I caught glimpse of a book called Annapurna, about the first women’s climbing team to make it to the top of the tenth highest mountain in the world. I have never climbed a mountain. I don’t expect I ever will, not even if the full bloom of health returns to me. But I picked up that book and bought it because I thought it might help me make it through.
Endurance. These stories of endurance fascinate me. How did those eighteen men do it? How did they survive the merciless cold, with little hope of rescue, forced to subsist on the cold naked bodies of the ones who had died before them? How did they hang on? How is it that none of them just walked across the ice field into purposeful oblivion?
In 1984, PhD sociologist Dianne Timbers came down with a respiratory infection. After five weeks, she appeared to have finally recovered. But in January 1985, she got sick again. This time, it didn’t go away. This was three years before the CDC defined the diagnostic criteria for an illness agency researchers named “chronic fatigue syndrome.” It was four years before I came down with a case of mono and experienced my own brief recovery a few months down the road, until I contracted a cold and the fatigue crashed back into my life with a vengeance and never went away again.
But Timbers got sicker, much sicker, than I ever did.
I lay on my back 24 hours a day, getting up only to use the bedside commode. I couldn’t talk above a whisper. Conversations of more than a few sentences caused a relapse. I couldn’t read, write, walk, listen to the radio, watch TV or sleep on my side or stomach. Being moved by wheelchair from my room every two weeks so the room could be cleaned caused a relapse lasting about a week. [CFIDS Chronicle, Winter 2009, p. 34]
Even eating was exhausting, so she only ate mashed food. But then one day a whole pea appeared on her plate, and she ate it. When she found that she could tolerate eating this one whole pea, she imagined that perhaps she might work her way up to other solid foods. Gradually, she increased the solid foods in her diet, until finally she was able to eat without having any of her food mashed.
She wondered if there might be a “one pea” equivalent for walking. In 2001, she began an exercise program based on her success with food. She started by sliding one knee to her chest while sitting in bed, once a day. After two and a half years, she had increased this exercise to six times per day. Over the next two years, she added arm and trunk strengthening work, and more leg exercises.
In late 2005, she began standing while leaning on the bed. After nine months, she was able to stand for three minutes, eight times a day. She began standing unsupported four months later. By June 2007, she was walking two steps a day. The next month, it was six, then 21, then 48, and so on, up and up and up.
Now she is able to cook her own food and do her laundry, walk without use of her scooter, and drive herself to medical appointments and grocery stores. She endured, and she has won her freedom.
To me, endurance is when you don’t know when or if you will be rescued and still you keep on going. Not one of the rugby players wandered off into the vast, obliterating ice fields. They waited. And finally, two brave souls took off in the direction which they hoped would lead them to verdant land and to people who could rescue their friends. Those two men walked for nine days through the mountains. No climbing experience, no equipment. They walked and walked, these gaunt men, until they came to a green valley and saw two shepherds on horseback and flagged them down. One of the men, Roberto Canessa, said in an interview,
You keep up that determination inside of you, thinking, saying, ‘One more step. Just one more step. I’m going to keep going, keep walking. Every step brings me closer…. I won’t die in the snow.’ And when you think you can’t take another step, you keep going. You get stuck, you curse, you hate everything, and yet, you get up and start going again. [from the documentary, Stranded: I’ve Come from a Plane that Crashed on the Mountains]
The same with the survivors of the ship Endurance. They didn’t know how they would ever be rescued. And finally a crew of them set off in a small boat and braved the frigid seas and made a miraculous journey to civilization.
Dianne Timbers didn’t know, when she started, if her exercises would bring her to a different place, or if she would be left stranded on the vast, desolate island of her brutal fatigue. But she did it anyway. The woman who found she could eat one pea then found she could slide one knee up to her chest, and then she could stand for a bit, holding on to the edge of her bed. Now, she walks two and a half miles every day.
I am tired, as I write this. My body is heavy. I lie under my tattered brocade quilt, propped up by white-cased pillows. I am surrounded by piles of papers on the biology of chronic fatigue syndrome, and the pages of the book I’m working on. “Writing,” said the naturalist John Muir, “is like the work of a glacier: one eternal grind.” I have many notes that need to be typed, but I don’t think I can sit in front of the computer too long today. Instead, I write in bed. I have the energy, at least, for that.
[i] The name of the ship that was crushed by pack ice, leaving its men stranded on the coldest, most isolated continent on earth, seems no small irony.