Memoir Excerpt


It's ironic that Amyotrophic Lateral Sclerosis is a tongue twister, given that before long, the patients who get it cannot twist their tongues enough to utter a single syllable, let alone eleven.  And it certainly doesn't sound like something you die from.  You die from cancer.  You die from a car crash.  You die when a plane is flown into the Twin Towers.  You die in war.  You don't die of something called Amyotrophic Lateral Sclerosis.  That's something they check you for in gym when you are in the fifth grade.   ALS is something that they should just point out, and send you home with or without medication for, like a curve in your spine.

In fact, when the disease was first put on the table, this is exactly how I heard it.  I heard them say the words, "Lou Gehrig's disease," or rather, I heard Bob say it.  And I saw the words Amyotrophic Lateral Sclerosis come up on the computer screen when I typed  "twitch in arm" in Google, but none of it registered.  From December 12th when my husband told me he had a twitch in his arm and made a doctor's appointment to have it checked out, and I mocked him for such silliness, until December 29th when he was diagnosed, I uttered the words, but I didn't hear them.  I didn't really read what they meant on the screen.  I just pushed them and it to the back of my mind as I continued to decorate the house and bake cookies and shop for Christmas for our two children, then three and eight.  The furthest thing from my mind was that my husband was dying.  Or at least I thought so.