Chapter 1: The Stuck Finger
Pre-diagnosis: January 2013
The foreshadowing of my death appeared in my right index finger.
It was a freezing January morning in Washington, DC, and I was swimming in a brightly lit indoor pool. To motivate myself, I pretended I was in a sparkling ocean somewhere exotic with the sun shining down. It helped.
My father-in-law, Dr. Dave, and I were swim training for our next triathlon. (Dr. Dave is not to be confused with my husband—David—who is a lawyer, not a doctor.)
My entire body glided through the silky warm water—but not my right index finger. I swam with full-body, smooth grace. Except that finger staging a vicious, strange, and ridiculous protest.
Come on, finger, get with the program.
I imagined an “off” day for an index finger was a rare thing—probably even rarer to notice such a minute detail. But it was distracting and throwing off my swim game.
I reached over the swim rope during a lap break and showed Dr. Dave.
“It’s weird,” I said, pulling my goggles onto my forehead. “I can’t fully extend my finger when I take a stroke. It’s, like, stuck or something.”
He pulled off his goggles and squinted. My hand looked like a crooked old-lady hand—all pruned up from the swim and with that odd, stubbornly bent finger.
Dr. Dave wiggled my fingers a few times. He shook the water out of his ears.
“Huh. Well, we could tape your fingers together?” Family doctors and fathers-in-law are clearly not prone to alarm.
“Nah,” I said.
I returned my goggles to my face. I decided to finish the swim strong.
Which I did. But the finger didn’t quite get unstuck until hours later.
Looking back, it was the first sign of ALS. The very first breadcrumb in a long, miserable trail of questions leading to the definitive answer: You are going to die.
I was thirty-one years old that day and had no idea that a “stuck” finger was the beginning of the end. The beginning of a life changed abruptly and forever. The beginning of my search for meaning and purpose.
It seems narcissistic or idiotic now, but honestly, I had never given death any thought.
I didn’t believe I was invincible. I simply believed I had time. That there would always be enough time, enough hours, enough hugs and kisses, more triathlons and countless marathons to look forward to.
I lived with the expectation of a classically beautiful, long life with my husband, David. There would be kids—who knew how many or when—but kids were in the expectation, the vision. And after we retired, maybe I’d learn to knit or start playing the French horn again. Maybe I would do 5Ks with the grandkids. They’d exclaim, “Wow, Grandma. You are fast!”
Or maybe I’d be crotchety and point with my little-old-lady finger while saying “Get off my lawn!”
A bent finger in the pool. A crooked old-lady finger. The start of my perfect little-old-lady dream life disintegrating before my eyes.