Living with ALS

Receiving a diagnosis of ALS is emotionally devastating and riding the usually fatal disease to the grave is an experience that tries men’s souls. But as I once heard Rabbi Harold Kushner (When Bad Things Happen to Good People) say in a speech, while there may not be a cure, there is always opportunity for healing. And indeed, I have known two people with ALS, or Lou Gehrig’s disease (called motor neuron disease in the UK), and I witnessed first hand the triumph of the human spirit they both achieved as they fought through their physical and emotional losses to embrace life.

Today’s San Francisco Chronicle features a clear-eyed front page story, byline Sabin Russell (who I know a little), about an ALS researcher who now has the disease—and, like my friends before him, is keeping on keeping on. From the story:

From the living room of Dr. Richard Olney’s Corte Madera home, sliding glass doors offer a wide-open view of the tidal marsh in front of his house, of passing clouds and of the shorebirds that fly in and fly out.From the story

Inside, the man who once rode mountain bikes and ran triathlons sits nearly motionless in his wheelchair. He watches the world with the same intense intellectual curiosity that made him one of the nation’s leading experts in ALS, or amyotrophic lateral sclerosis – popularly known as Lou Gehrig’s disease…

Before he lost the ability to walk, Olney arranged to equip his home with ramps and a hospital bed. He bought a special van from the family of a patient who had died. The Olneys bought a big-screen television and rented lots of video, but they still go out to movies, live theater and music concerts. “We’ve settled into our lives,” Paula Olney said. “The first six months were terrible, because I noticed some new deficit every week. This plateau makes it easier to adjust.”…

While Olney cannot work in his old lab, he keeps up with the literature in the field of ALS research, and he continues to publish. In January, the Journal of Life Sciences published his latest article: “When the Doctor Becomes the Patient.”

“I became anxious a few times when thinking about how disabled I would become,” he wrote – using a modified computer mouse and specialized software. “My anxiety was relieved when I followed my own advice. I focused on what I was able to do today and realized that more disability would come on gradually, meaning that I would have time to adjust to it.”

Olney has a close-knit and caring family, which surrounds him with love and support. He said he is relieved that he has had time to prepare them for a future when he is no longer there. “Prepare for the worst, but hope for the best,” he said.

This is precisely how my friends also coped—and indeed, overcame. How refreshing to see a story that doesn’t treat the subject as if people with ALS don’t have lives worth living.