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facts & arguments

Michelle Thompson/The Globe and Mail

Facts & Arguments is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.

At age 58, I felt healthy and strong despite my rendezvous with a neurologist to discover why my right hand had, over the previous six months, become increasingly cold and weak. But, as I would soon learn, the fit, slim and trim are prime candidates for the only terminal illness named after a professional athlete.

Restrained and cerebral, the doctor avoided any non-medical chatter, with one exception: Within 10 minutes of my arrival he noticed my watch. Obviously, he had an interest in classic timepieces. Mine is a 9-carat-gold-plated Omega Seamaster, circa 1961. Mechanical, it winds itself with the movements of the body.

"Did you get that watch from your dad?" he asked, directing me to the examining table.

"Yup," I said.

"You'll have to take it off while I do more tests."

I unbuckled my watch and handed it over. "Only if you promise to give it back?" I said, trying to keep things light.

He smiled thinly, took the watch and examined it, reading out loud the letters engraved on the stainless-steel back, the side with the famous Omega seahorse figure: "'G.H.P. – 1951-1961 U.K.H.M.' Hmmm. What's that all about?"

The initials meant nothing to him, nor would they to most. They are my father's – Gerald Henry Priest – and the initials of the former Yukon-based company he worked for – United Keno Hill Mines.

I told the doctor that much, but didn't mention the calamity born of their less-than-amiable employee-employer relationship. I said nothing about how I was going to write a book about my dad's story – an account of his conviction for unlawfully selling almost 70 tons of silver ore from the mine in the 1960s, and how this affected our family.

After the examination, when I was dressed and had my watch strapped tightly on, the doctor said my hand troubles were likely due to some sort of "degeneration," but that I needed an MRI before he would know what was going on "in my brain and cervical spine."

Eight weeks later, on Jan. 10, 2012, I was diagnosed with amyotrophic lateral sclerosis – also known as ALS, or Lou Gehrig's disease.

Although classified as a rare disease, ALS is relatively common – two cases per 100,000 people. With seven billion souls on the planet, that's a lot of people. Lou Gehrig, New York Yankee baseball player, died of the disorder at the age of 37. It is a relentless, neuromuscular-destroying mutation that results in total bodily paralysis and death, usually by suffocation or starvation. While the pace of progression is unpredictable, most PALS (people with ALS) live two to five years after diagnosis.

As one PALS said, the disease transforms your body into a container for your brain – a container that demands feeding, ventilating, cleaning, turning and tender loving care. Many PALS rely on feeding tubes, tracheostomies and 24/7 nursing care to survive. In the 75 years since Gehrig died, medical science has come up with zilch – no treatment and no cure.

Every day I am worse than I was and better than I will be. Physically, a nest of worms twitches under my skin. Electric storms flit through my arms, back and torso, and even my lips and around my eyes. What muscle remains on my skeletal upper arms aches to the bone, especially at night.

My voice is a soused Minnie Mouse. Wholly unintelligible. Right now, I can't speak or eat or drink more than sips. The ability to swallow will go, too. Right now, I can move my legs and arms. Sort of. My stiff fingers can hit a keyboard and hold a pen. I miss my voice and my ability to communicate more than I miss fried eggs and bacon.

Psychically, I feel myself – and my privacy and independence – seep away day by day. I watch my loved ones as they watch me become a drooling, grunting quadriplegic waif. But this affliction has a flip side: There's nothing like a deadline to get a writer writing. I had the ultimate one. While I could still talk and walk and eat and type, I got to work.

A Pollyanna I am not, and I don't see any silver lining to dying prematurely, except perhaps to wake every morning to the epiphany that the world is a wonder. Still, without this diagnosis, would I have quit my job to devote the hours to researching and writing my story? Would I have had the help from so many to pull my book together?

For most of my life, I buried the memories of my family's past, hoping they would never, zombie-like, come back to haunt me. Now, I've dragged them from the grave and dug in other cemeteries to unearth parts of the story I never knew existed.

Half a century has passed since it all happened, but so what? Time not only flies, it lies. Right now, the golden needles of my Omega Seamaster circle night and day. Time moves forward, but mostly round and round.

As the Irish say, "The thing about the past is it is not the past." The present is but the past's future. My future looms, and soon will be my past. But not yet.

In the meantime there is my story, which, like many stories, happens in the past and by telling lives in the present.

Alicia Priest lives in Victoria. Her memoir, A Rock Fell on the Moon, was published on Sept. 13.

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