During May, ALS Awareness Month, let's pay special tribute to my sister Nell, all the others living with this disease, and those who have gone before them. Think of them the next time you take a step. Embrace your child. Speak softly to your loved one.
It's odd to think of my autopilot life, the one before. Working at a job I loved and navigating the daily dance of sibling warfare, homework and appointments. Then one night I looked down at my left hand. "Holy shit," I yelped. "You need to go to the doctor," John said.
While my skiing days might be few and far between until we find a treatment for this disease, that's okay if, and only if, I realize the importance of harnessing that frustration and anger and channeling it into more valuable assets.
I was diagnosed with ALS, which affects voluntary muscles from head to toe, in February of last year. I could choose to feel ashamed or disabled when sitting at a dinner table and needing to be fed, or, as I now see it, I get to choose who feeds me!
It had only been a couple of months since I had been diagnosed with ALS, but I was constantly reminded of how few people have actually ever heard of the disease. To say this was frustrating is the PG version of my feelings toward the issue. This sparked the creation of A Life Story Foundation.
Every day is a challenge, even in a battle between my body and me. Don't get me wrong, I do have a choice in what I put in my body, but how my body functions or even appears is outside of my control because of ALS.
As if being diagnosed with a terminal disease (for the record, I have no intention of letting this beat me) isn't bad enough, it is a disease that the general public has never heard of or knows very little about.
"I discussed your desire to swim the Channel with the doctors on the tumor review board, and I'm sorry, but no one believes that you will be able to do it. The fatigue from the chemo will be too great." I looked at my husband and thought they don't know me.
Stephen rarely does public talks anymore. When he does, he draws an impressive crowd. And most of the people sitting in those seats are unaware of the effort that goes into composing the script he will follow over the course of the evening.