I am taking a memoir class with Marion Roach Smith, who is a tremendous teacher. Below is my first piece (even though most of you know the story already!):
The harbinger of my death showed up innocently enough in the crook of my right index finger as I was basking in the artificial tropics of the gym pool, pretending it wasn’t January.
Resting between sets, I chatted with my father-in-law in the next lane.
“It’s weird,” I said. “I can’t fully extend my finger when I take a stroke. It’s like stuck or something.”
“Well,” he said, “we could tape your fingers together.” Family doctors are not prone to alarm.
“Nah.” Too much hassle. But looking back, that was the first sign. I was thirty-two years old.
In September, I made it through the 70.3-mile half Ironman triathlon I’d been training for since January. It was a perfect late summer day and I was positively bursting with pride, even though my finishing time, just thirty minutes before the eight-hour cutoff, was slower than most competitors. I chalked it up to spending five minutes struggling with my wetsuit, a shaking sensation in my legs on the bike, and walking most of the downhills because I felt like I was stumbling over my toes.
In November, I saw my first neurologist who ordered a series of diagnostic exams. One test delivered a machine gun-like explosion of electrical shocks that caused my leg to leap into the air, convulsing. In another, the doctor stuck a needle into my flexed calf muscle and wiggled it, listening to the attached machine emit loud crackly sounds like a ham radio trying to tune in a far off station (“I’ve been told it’s like something out of Guantanamo, by people who would know,” he said afterwards. This was DC, after all).
Every new doctor produced a new theory, which produced a new test and sent my husband and I running to Google to learn about rare diseases like Stiff Person Syndrome, a crazy condition where a person’s muscles all freeze at once and he topples over like a stone. But every theory was ruled out when the test came back normal. We hardly felt like celebrating though, because it was so frustrating to be starting over constantly, feeling no closer to the truth.
Besides, I now walked with a cane after falling in the middle of a busy intersection.
In May, my fourth neurologist referred me to a specialist in amyotropic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
“Don’t worry,” he said. “It might just be a distant cousin of ALS.” But Google told us to worry.
The ALS specialist repeated that Guantanamo test, listening hard to the crackling static. The needle hurt like hell, but I didn’t care because I sensed we were close to answers. Besides, I’d already beaten that test.
Even so, her conclusion was “probable ALS.” She went on with her explanation, but my brain jammed on the word “ALS.” I stared at her, dumbly nodding.
“Wait,” I finally interrupted, my voice trembling. “Are you saying it’s ALS?”
“Well, we know you’re on the ALS spectrum. But what is the point of a diagnosis? If the point is to get you resources and into clinical trials, then we can do that now.” She kept talking, but all I heard was “ALS.” Again.
We didn’t see much of the sun that summer. We stayed indoors in a panic-stricken stupor, memorizing depressing facts from Google. ALS was like a horror movie: a sinister disease attacking at random but seeming to prey on the physically strong – veterans, farmers, athletes. What begins as weakness in an arm or leg spreads quickly, paralyzing the person’s limbs one by one and rendering him unable to speak or swallow. There is no treatment so within a few years (or months) he is bedridden, shackled to the tubes eating for him, breathing for him. All while he is fully conscious, forced to watch himself die slowly.
The term “probable” was perplexing though. A probable chance of rain meant there was still chance of no rain, right? So why was the first question at the ALS clinic about whether I had a will?
Eventually, I couldn’t take the uncertainty and requested another appointment with the ALS specialist. After she completed the Guantanamo test again, I asked whether there was a chance it was something other than ALS. She shook her head. “Probable,” it turned out, just meant the symptoms hadn’t shown up in enough body parts to qualify as “definite.”
When someone asks how I felt at that moment, images from the previous twenty months flash in my mind: my stuck finger, the Guantanamo test, falling in the street, mind-numbing fear. Mostly, I remember walking (walking!) out into the August sunshine, talking (talking!) to my parents and husband, and eating (eating!) pizza that night. The average life expectancy for a person with ALS is 3-5 years; I had spent almost two getting the diagnosis. That we could have had the same news four months earlier if I’d understood her correctly proved that I had no more time to waste. I wasted the summer worrying and the news came anyway.
So actually, that became the moment I realized that for all ALS destroys, it can’t take away my family or the sun warming my face. As long as I live.