Learning to live with ALS, day by day

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BILL NEMITZ

September 9, 2007



She could turn her back on life right this minute and nobody would blame her.
She learned seven years ago that she had breast cancer – and survived. Then three years ago, her husband was diagnosed with a brain tumor – and he beat that, too.

But this is different. On May 11 at 3 p.m., the telephone rang in the home of Nan and Lee Urban. It was a doctor at Massachusetts General Hospital calling with the worst of news: Nan, after months of wondering why her hand kept cramping up and her speech kept slurring, learned she had ALS, also known as Lou Gehrig’s Disease.

“People hear about (ALS) because it’s so awful, but they don’t really know how awful it is, how devastating it is,” Nan said last week, her voice raspy. “It’s pretty tough.”

It’s worse than tough. There is no cure for amyotrophic lateral sclerosis, which relentlessly attacks the brain and spinal cord until even the simple act of breathing becomes impossible.

Nan, who for 23 years has changed many a life as a social worker at Deering High School, can’t say when those awful days will arrive for her. But this much she does know – right now is no time to quit.

Working with eHope, a volunteer organization that helps people with life-threatening illness, she’s recorded 1,650 words and phrases on a computer so that when her voice finally fails her, she can let her fingers do the talking.

She’s sewing four quilts while her hands will still let her – one each for daughter Anna, 30, and sons Reid, 28, Seth, 24, and Chris, 17.

Working with a small army of family and friends, she will lead the charge – albeit in a wheelchair – when the annual Walk to D’feet ALS kicks off at 11 a.m. Saturday at Portland’s Back Cove. (For more on the walk, go to www.walknne.alsa.org.)

“She’s doing as well as anybody could in this situation,” said Lee, the director of Portland’s Planning and Development Department and captain of the 100-plus strong Urban Team in Saturday’s walk.

That said, Lee added, “there’s not a day that goes by that we don’t cry.”

Nor does a day go by that Lee doesn’t log on to his computer to check on the latest research into a disease that has for so many years been a mystery. Scientists are making progress – they think the key to ALS lies in a defective gene and a yet-to-be- identifed environmental trigger – but these things take time.

Too much time.

“I know there’s no hope that I’m going to get better,” Nan said. She tried going to an ALS support group – one of 13 in Maine – but left in tears after hearing talk of dying … and not being able to breathe. …

“I’ll go back eventually,” Nan said. “But I’m not sure I’m over that hurdle yet.”

Better, for now, to gather with her friends and embrace a life that, for all its ups and downs, is still far from over.

ALS, after all, hasn’t yet robbed Nan of her disarming smile. And while she can’t escape the brutal reality that it’s possible to beat cancer but not this, she can use today as her shield against tomorrow.

“I’ve got to learn how to live with this disease,” Nan said. “I’m not yet ready to die from it.”

Columnist Bill Nemitz can be contacted at 791-6323 or at: bnemitz@pressherald.com
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