Breaking My A.L.S. Promise
Like most people, I was impressed and amused by the A.L.S. ice bucket challenge — that so many people got involved and that both funds and awareness were raised. But I was also conflicted.
Thirty-six years ago, my husband died of A.L.S. Gene, age 26, thought he had jammed his thumb playing softball, but when he could no longer muster the strength to open the car door, he went to a neurologist. At first the doctor thought he might have a pinched nerve. But the weakness progressed and I finally nagged Gene into getting a second opinion. It turned out that he had amyotrophic lateral sclerosis, a disease so hard to spell and pronounce that everyone referred to it as A.L.S.
"Does this mean I have to think about a wheelchair and a nursing home?" asked Gene, not believing for a moment that he would actually need either one.
"Those are the least of your problems," the doctor said. "It's breathing you have to worry about. This disease affects voluntary muscles and the diaphragm is a voluntary muscle."
Gene was an even-tempered cool character, philosophical about what was happening. I was not.
"Why you, why us?" I would wail.
"Why not?" Gene would answer with a smile.
We sold our worldly goods and bought a used van outfitted with a fold-down bed and a camp stove and left Chicago in March 1976. We planned to drive across the country, visiting college friends and reconnecting with far-flung relatives, and seeing and experiencing as much as possible; our "farewell tour," we called it.
When we reached Los Angeles, I begged to visit a regional A.L.S. office, which had been listed as one of the few official-sounding resources in a pamphlet I had picked up at the doctor's office.
"Maybe there are new treatments, research we should know about."
"If you want to go, we'll go," Gene said.
The office was in a suburban strip mall. The sole woman inside seemed surprised to have visitors. Except for her desk with a telephone and stack of fliers on it, the office had no furniture. In the corner was a life-size cutout of Lou Gehrig.
I told her about Gene's diagnosis and explained that we were interested in finding out more about A.L.S. research. She invited us to an upcoming picnic. When I said we were just passing through, she looked flustered and asked if we had traveled to California just to come to this office.
After we described our "farewell tour," she warmed to us. Her husband had died of A.L.S. and she had opened this office to raise money for research. It was her life now, she said. But there was nothing she could do to help us.
My tears, once we were safely in our van, were angry ones. The weakness had begun to spread to Gene's legs and to his right side. He was dropping forks; his impeccable handwriting had become a shaky signature. I had imagined a doctor and a lab and a research center that would give us a bottle of pills, a shot in the arm, a plan, a reason to hope. Instead, we'd found a widow.
I expected Gene to rail against the lack of funds, the lack of interest in the disease that was wasting him, but instead he turned to me. What had I expected? Why had I insisted that we go, just to be reminded of what was ahead?
"Promise me something," he said. "When I die, you will never work for A.L.S. No fund-raising, no telethons, not even a bake sale. Nothing. You are not allowed to let my A.L.S. become your life."
"If you become a professional widow, I will haunt you," he said. "I will haunt you hard."
Gene died in April 1978, at home in our cabin in Petersburg, Ill. Our daughter, Kate, born after we ended our tour, was 10 months old.
I honored Gene's request not to let A.L.S. define our daughter's or my life. But recently, faced with several videos a day of people pouring ice water over their heads, several people also pouring their hearts out about their own or a family member's diagnosis, I knew I had to do something, too. Telling my story, Gene's story, is a bucket of ice water poured over my head, causing me to shiver and remember. I suppose I am inviting a haunting. That's O.K. I'm ready for it.
Click here to read the essay – with art by Celine Loup – on The New York Times' site.