Life as a Race Against a Diagnosis

http://www.nytimes.com/2013/04/09/health/living-life-as-a-race-against-als.html

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While undressing for bed one night in 2009, Susan Spencer-Wendel noticed that the muscles in her left palm had disappeared, leaving a scrawny pile of tendons and bones. Her right hand was fine. She let out a yelp and showed the hand to her husband, who told her to go to the doctor. She was 42.

Ms. Spencer-Wendel then entered a protracted period of denial. Adopted as an infant in Florida, she traveled from her home in West Palm Beach to find blood relatives living in Cyprus, who confirmed that there was no family history of her worst fear: amyotrophic lateral sclerosis, or A.L.S., the relentless disease that lays waste to muscles while leaving the mind intact.

In June 2011, a doctor in Miami gave her a definitive diagnosis of A.L.S., smiling “like he was inviting me to a birthday party,” she writes in “Until I Say Goodbye: My Year of Living With Joy.” Patients with A.L.S., which is also known as Lou Gehrig’s disease, typically live no more than four years after the onset of symptoms. There is no cure.

Ms. Spencer-Wendel thought she had prepared herself fully — that she would burst off the starting block like a sprinter to greet her fate. Instead, when she heard the news, “I dropped my head for the start ... and began to cry.”

Her heart-ripping book chronicles what she did immediately after her diagnosis: she decided to embrace life while death chased her down. Instead of letting the world close in on her, she resolved to travel as far and as wide for as long as she could. She went to the Yukon with her best friend, Budapest with her husband, and the Bahamas with her sister.

Each exertion robbed her of muscle. When muscles break down in healthy people, she writes, they grow stronger as they repair. When muscle breaks down in an A.L.S. patient, it is starved of the tonic effect of neuronal stimulation and does not recover.

Not long after her diagnosis, Ms. Spencer-Wendel climbed down — then up — a steep bank of stairs at a beach in British Columbia. “I left a lot of muscle on those stairs,” she writes.

Her physical therapist told her to stop the strenuous travel. But Ms. Spencer-Wendel, a woman of incalculable inner strength, was not to be dissuaded. Each of her three children chose a trip. She and her 14-year-old daughter, Marina, traveled to New York so that Marina could try on dresses for the wedding her mother would not live to see.

Ms. Spencer-Wendel kept notes and wrote articles about her trips for The Palm Beach Post, where she had been a reporter before she grew too weak to do her job. A book contract gave her incentive to keep writing. Lacking the strength to use a regular keyboard, she began typing on an iPad. When dragging her hand across the screen became too difficult, she turned to her iPhone. “Its tiny touch screen keyboard was perfect, because I still had one helluva right thumb,” she writes.

And this is how she wrote 89,000 words.  Let me repeat: The woman produced a full-length book manuscript on her cellphone. She was assisted by Bret Witter, her collaborator, who helped her turn the iPhone manuscript into the endearing and all too human story that is “Until I Say Goodbye.”

An experienced reporter, Ms. Spencer-Wendel has a fine eye for detail, which she uses to extraordinary effect. She tells a harrowing story of hearing her 8-year-old son, Wesley, who was briefly trapped in an elevator, wailing with fear while she lay nearby, unable to shout loudly enough to summon help, or to move to comfort him. And her hilarious description of her “stink pickle” is likely to disarm even the most squeamish of readers.

It is a given that darkness lurks everywhere in this book. But Ms. Spencer-Wendel would rather keep the reader in a well-lighted place. Can she really remain this sunny in the face of death, and death so soon? Did she not also sob for hours at a time? Probably. But her refusal to dwell on her darkest moments is her choice to make. What she does offer the reader, without a drop of self-pity, adds up to much more.

A.L.S. is also the focus of “Running for Jim,” a documentary directed by Robin Hauser Reynolds and Dan Noyes that opens in the United States on Tuesday at the SoHo International Film Festival.

The film pivots on Jim Tracy, a gifted runner and the beloved cross-country coach at a small private high school in San Francisco who learned that he had the disease at age 59. His story received widespread attention in late 2010, when, shortly after his diagnosis, his best runner collapsed within a few yards of the finish line, then crawled her way across, helping her team win a state championship.

Interviewed at length in the film, Mr. Tracy is pragmatic about his illness. Like Ms. Spencer-Wendel, he has achieved a truce with it. He prefers confined spaces, he says, because there’s “less space to fall.”

“Running for Jim” is a grab bag of a film, too easily distracted by side excursions, like the story of an A.L.S. specialist who develops the disease himself. The film is at its best when it stops trying to be an A.L.S. primer and relaxes into the story of Mr. Tracy and his team.

The scenes that show him in action as a coach are priceless. “This is a stopwatch, not a sundial!” he yells during a practice. “This is real training, not pretend time!” The students clearly adore him. And the film shines with the gripping images of Holland Reynolds, 16, on her hands and knees, inching her way for her team — and her ailing coach — across the finish line.