“Would you rather have A.L.S., Alzheimer’s, or Parkinson’s?” someone asked. All those diseases are devastating, but A.L.S. is unique in that it usually kills within two to three years of diagnosis. It was just a game to my friends, all of whom are in their 20s. Everyone chose A.L.S., agreeing that it would be the fastest and therefore easiest death.
But I stayed silent. I hadn’t yet told my friends that I had been diagnosed with A.L.S. in July — two months after my 29th birthday. Had I been healthy, I might have answered A.L.S., too. But since my diagnosis, all I have wanted is more time.
When I first noticed I couldn’t type with my left hand, the doctors narrowed down it down to two options: a treatable autoimmune disease or A.L.S. They initially began treating me for the autoimmune disease. About once a month, we shut down my immune system so it would stop attacking my central nervous system. But with no immune system I made regular visits to the E.R. “At least it’s not A.L.S.,” I consoled myself.
When the treatment didn’t work and the weakness spread to my left leg and right hand, A.L.S. was the only remaining possibility. Still, I did that socially acceptable but also borderline insane thing where I sought second, third and fourth opinions.
I voluntarily subjected myself to excruciating medical tests. I got shocked with electricity, had my spinal fluid drained, and underwent a surgery to remove a piece of my muscles and nerves, all in the hopes of finding a different diagnosis. All of the tests confirmed the diagnosis of A.L.S.
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