CHAPTER 6
IF YOU HAVE THIS SYMPTOM, YOU
MIGHT BE DYING!
VANESSA
The numbness was back in my right hand.
I’d woken up this morning and fumbled my phone with fingers that felt dead.
It was 6:34 a.m. Saturday morning. I was sitting in the dark in my room wrapped in a blanket, my legs crossed on my bed, trying to do the in- through-the-nose, out-through-the-mouth breathing Yoga Lady had taught me to calm myself down. But the terror rolled through me like waves. It got bigger and bigger until it burst from my lips in a choking sob.
I didn’t want to wake Grace, so I stumbled to the bathroom with a hand over my mouth. I put the lid to the toilet down to sit and swiped open my phone to read the article on WebMD again, squeezing my right hand into a fist, feeling certain that I’d lost grip strength.
ALS can start off with something as simple as a weak feeling in your hands or feet. It’s a disease that attacks the brain cells that control a lot of your muscle movement.
ALS Association:
Gradual onset, generally painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches.
Mayo Clinic:
Hand weakness or clumsiness…
I don’t know why I needed to keep reading this. I knew exactly what this disease looked like.
I bit the inside of my cheek so hard I tasted blood.
At first I’d hoped it was just carpal tunnel. But I’d gone in for testing, and it was negative. They’d wanted to send me for more study and I’d refused.
There was no test for ALS. They diagnosed it by excluding other diseases that mimic it and monitoring the progression of your deterioration.
It could take up to a year of invasive procedures and poking and prodding before they slapped ALS on what was happening to me—and when they did, there was nothing to be done anyway. It was 100 percent fatal.
And now maybe the countdown had finally begun.
My life might officially be going from living to dying.
An average three-year life expectancy from the onset of symptoms—less if my family history was any indication. Melanie had lived only nineteen months after her voice started to slur, and she took the medications—which I would not.
I figured I had about a year. My muscles would continue to waste away, a little at a time. Then I wouldn’t be able to walk, feed myself, move. I was going to die unable to swallow, unable to speak, like Melanie had.
Entombed in the prison of my own body, fully aware, until it paralyzed my lungs and I suffocated to death.
I put my phone facedown on the bathroom sink and sobbed into my
hands.