The Cookie Crumbles
I’ll be mighty peeved to go,
Scrumptious times I’ve had here.
It was my most unforgettable Remembrance Day – November 11, 2011. I was seeing a Victoria, BC neurologist to discover why my right hand had become increasingly cold and weak over the past six month. As a writer and editor, I suspected it was too much awkward mouse manipulation. Earlier, my GP had recommended I change to an ergonomic mouse, which I did. But when my hand worsened – the muscles now slightly atrophied or shrunken – I did what any educated, semi-intelligent adult would do, especially one with a medical background (once upon a time, I’d been a registered nurse). I consulted Dr. Google.
Soon, or so I thought, I had a diagnosis: ‘ulnar nerve entrapment.’ The ulnar nerve runs down the inside of the arm and is responsible for that jarring ‘funny bone’ feeling when you knock that tender spot in your elbow. A website suggested doing some arm stretching exercises to free the trapped nerve which I did. Over and over. Otherwise, I was a healthy and fit 58 year old. I ran, biked, hiked, walked everywhere, and did yoga. Shit, I even ate kale.
But my right hand and fingers continued to wither, so here I was, seeing a top BC neurologist on Remembrance Day. The good doctor had chosen to work on a statutory holiday and I was eager to see him after waiting several weeks. I went alone as my husband was out of town. Right away I sensed he was a scientist first and foremost. With the bedside manner of a toad, he zeroed in on my medical history, reflexes and neural signs and tested all my limbs even though my only complaint was a cold and weak right hand. Restrained and cerebral, he avoided non-medical chatter.
With one exception. Within ten minutes of my arrival he noticed my watch and that triggered his conversational muscles. Obviously, he had an interest in classic timepieces. Mine is a 9 ct. gold-plated Omega Seamaster, circa 1961. Mechanical, it winds itself with the movement of the body. “Did you get that watch from your Dad?” he asked while 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, examined the face and turned it over, 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?” he asked.
“It’s a bit of a long story,” I said, “and not a happy one.”
The initials meant nothing to him nor would they to most although a few ears may itch at the mention of those dates and letters. They are my father’s initials – 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 from their less than amiable employee-employer relationship. And he asked no further questions. I also said nothing about wanting to write my Dad’s story. Wanting to write about my investigation into exactly how he stole 70 tons of super-rich silver ore and how his theft affected our family. In fact, less than three months earlier I’d traveled to the Yukon to begin some basic research. My plan was to work part-time while writing my book in my spare time.
The doctor placed my watch on a high shelf and then proceeded to zap my arms and legs with low-voltage electricity – a diagnostic form of torture known as EMG – electromyogram. He then poked long thin needles into my joints, which were less painful than the power jolts.
“Isn’t this what they do at Guantanamo?” I asked.
“Sorry,” he croaked while proceeding to poke me for what seemed like another hour but was probably 10 minutes.
After the examination, when I was dressed and had my watch strapped tightly on, he said my troubles were likely due so some sort of “degeneration” but that I needed an MRI before he knew what was going on “in my brain and cervical spine”.
“But the problem is my right hand”, I blurted out. “Is there anything I can do? Exercises to strengthen my hand?”
“Could it be a brain tumor?” I queried, hoping like hell it was because tumors can be surgically removed as well as radiated and chemically killed.
I drove home stunned, a light sweat breaking on my back, my mind whirling with nightmare possibilities. Multiple sclerosis? A minor stroke?
Two weeks later, I underwent an MRI and saw Dr. Taciturn again, this time with my husband. My MRI was normal, he announced. But he wasn’t smiling. Instead he instructed me to jump up on the examining table and once again, hammered my knee and elbow. Then asked me to open my mouth.
“Any trouble swallowing or speaking.”
“No, not at all,” I said perplexed. “What’s going on?”
He glanced down at his shoes, up at the ceiling and sideways at an off-white wall. Then he looked at me.
“Have you ever heard of ALS?”
“What?! Are you kidding!? Of course I’ve heard of ALS!”
“It could be ALS. I’m sending you to the ALS clinic in Vancouver for more extensive testing.”
The doctor, my man, the room and stippled ceiling melted away like snow in the Sahara. I felt myself dissolving – disintegrating into a million tiny pieces that floated down into a still, dark hole. Somehow, I was sitting in our car. Somehow, my husband was driving. We both stared straight ahead silent until I turned to him and spat out, “If it’s ALS, I tell you, I’m not sticking around for long!” He gasped, his head collapsing on the steering wheel, as he struggled to stay on the road. We drove the rest of the way home without a word.
Six weeks later, On January 10th, 2012 I was diagnosed with ALS at the Vancouver G.F. Strong ALS Clinic. The Clinic huddles in the basement of the basement at the back of the building, hard to find and impossible to see. As we descended via the main floor elevator, we got the architectural message loud and clear: abandon hope all yea who enter here. I soon met up with a female neurologist and an expert technician who knew how to zap me without causing undue pain. After the test, she guided my husband and me into a small room and began her pronouncement with “Unfortunately . . .” I heard nothing else.
Although classified as a rare disease, ALS is relatively common. One to two people in every 100,000 are diagnosed with it each year. With 7 billion souls on the planet, that’s a lot of people with ALS. Also known as Lou Gehrig’s disease after the 1940s New York Yankee baseball player who died at age 37 of the disorder, ALS is the only terminal illness named after an athlete. It’s a relentless, neuromuscular-destroying mutation that results in total body paralysis and death, usually by suffocation, starvation or suicide. While the pace of progression is unpredictable, most PALS (people with ALS) live 2-5 years. As one PAL says, the disease turns your body into a container for your brain. Of course, it’s a container that demands feeding, ventilating, cleaning, turning and tender loving care. Many PALS rely on feeding tubes and tracheotomies 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. My theory – based on how I feel – is that I’ve been poisoned. We’ve polluted the planet and some of us – ironically, the fit, slim and healthy ones – are toxic. Once triggered, the toxin releases a cascade of destruction.
Every day I am worse than I was and better than I’ll be. Don’t believe anything you hear about ALS being painless. Physically, a nest of worms wriggles under my skin. Electric storms flit through my arms and back and torso and even my lips and around my eyes. What muscle remains on my skeletal upper arms ache to the bone, especially at night. My voice is a soused Minnie Mouse. Wholly unintelligible. Right now, I can’t speak and I eat like a toothless baby. Until a few of months ago, I still managed to drink. A can of Guinness was my alcoholic beverage of choice. But that’s gone now. My nightly drink, if I take it, comes via the feeding tube. My ability to swallow all but the tiniest sips of water is gone. Right now I can move my legs and arms and my fingers, fingers that can’t negotiate a button or pick up a dime, but can hit a keypad and hold a pen. I miss my voice and my ability to ask and answer questions or make people laugh or piss them off more than I miss fried eggs and bacon.
Psychically, feeling and watching your body — and your independence — seep away tick by tock, is torment. Add to that watching your loved ones as they witness you become a drooling, grunting quadriplegic before their eyes. There’s nothing pretty about ALS. What those three letters really stand for is Always Losing Something.
But this affliction, as so much does, has a flip side. There’s nothing like a deadline to get a writer writing. Faced with the ultimate one, I quit my job and while I could still talk and walk and eat and type, and got to work. A Pollyanna I am not and don’t see any silver lining to dying prematurely, except perhaps to wake every morn to the epiphany that the world is a fuckin’ beautiful place. Still, I wonder, without this diagnosis, would I have quit my job to devote the hours and energy to writing my story? Would I have had the help to pull it together from so many? Or the guts to expose what has been deep-sixed for so long? For most of my life, I buried those memories, 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 past 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 this story, which like many stories happens in the past and by telling lives in the present.
– July 16, 2014.