Where Were You
Four Years Ago Today?

September 8, 2004:

I should have known this doctor’s resemblance to Quentin Tarantino was not a good omen.

I’m sitting in yet one more doctor’s office, waiting to hear whether this violent-film-director look-alike has any better idea what is happening to me than the any of the others have had.  It has been a long slog through more hospitals and doctors’ offices than I care to remember, and no one has been able to tell me why my voice is slurred or my right arm is weakening.

We can be thankful it’s not ALS, the first neurologist had said. I think back to that bright June day, when myasthenia gravis had been my tentative diagnosis. It made sense. I fit the demographic, had the family history. I’d witnessed firsthand the devastation it had wrought on my father.

But as much as the myasthenia gravis diagnosis had inspired dread, I’d been relieved it wasn’t ALS. I had convinced myself it was.

And as the days and weeks and months have gone by without a diagnosis, my suspicion has lingered.

How many times have I tortured myself with the ALS entry in the Mayo Clinic Family Health Book? Hasn’t its familiarity left my heart racing, my skin clammy, my mouth dry? I’ve slammed the book shut over and over, calming myself with that first neurologist’s words: We can be thankful it’s not ALS.

How many times has Jim counseled me to stop giving in to fear? No matter how often I work myself into a frenzy, he has patiently repeated those reassuring words: We can be thankful it's not ALS.

How many tests have I endured over 15 months, repeating that mantra as the worst possibilities flash through my mind? We can be thankful it’s not ALS.

Lying motionless for MRIs and CT scans. Wincing through the early EMGs. Later, sitting stoically as yet another needle was unceremoniously jammed through the underside of my chin into my tongue. Waiting for results minute by agonizing minute. We can be thankful it’s not ALS.

I have lain awake at night for hours, contemplating what no parent wants to contemplate. I’ve gone to sit on the edge of Nick’s bed, then Emily's bed, nuzzling their soft, round cheeks as my tightening throat threatens to cut off my breath. I’ve held a sleeping Zachary for hours and hours through the darkest stretch of the night, trying to stave off the dawn because if I could just make time stand still, the worst could not come.  I have sobbed uncontrollably.

And always, always I have fought my way back from my worst fears with that one simple declarative: We can be thankful it’s not ALS.

I cling to those words now as they reverberate in my head, and I suddenly realize the doctor is speaking.

“…motor neuron disease…” Tarantino continues.

Whoa. What is he saying?

 “…EMG shows denervation…”

We can be thankful it’s not ALS, the echo in my head interrupts.

I hesitate. Then, taking a deep breath before I lose my courage, I plunge ahead.  

“And by motor neuron disease, you mean ALS,” I venture, stating my question—my gravest fear—as fact. My calm, steady voice belies the panic gripping my heart.

We can be thankful it’s not ALS, the echo insists.

A brief silence.

“Yes.”

That’s it, then.

There’s nothing more to say. Tarantino squirms almost imperceptibly under my unflinching gaze. This scene is much too subdued for one of his films—no graphic violence, no gratuitous blood spurting and spewing and spattering the walls of the sterile exam room. Just bright lights. His white lab coat. An exam table. The standard stainless steel sink.

But it’s there in his eyes. A lethal menace. The foreshadowing of a gruesome death.

Fade to black. Roll the credits.

He blinks first, collecting his file off the desk and somberly making his way toward the door. He’s done the most distasteful part of his job, and he’s gone.

I imagine him shrugging off a heavy, black cloak as the door closes, as he tries to shake off the dismal reminder of the inevitability of death and its sometimes capricious nature.

What will he do the rest of the day? Will he think of me tomorrow? Next week? Ever? When his wife asks about his day, will he tell her he delivered a death sentence to a 35-year-old mother of three?

Well, at least he gets to leave.
 

Jim and I are left to process this stark new reality. I knew this. My damn gut instinct. I knew, knew, knew this. 

We can be thankful it’s not ALS. Right.

I am eerily calm. Composed. Detached. (Unhinged? Maybe.)

The silence is deafening, begging to be broken, begging for the first words A.D. (after diagnosis) to be spoken. I choose them carefully.

“See?” I say, giving Jim a weak smirk. “I’m always right.”