All afternoon I’d had the feeling I needed to call home. I needed to talk to my parents. As a 22 year old who’d moved across the country and barely remembered to mail her parents weekly the need to talk to my parents was overwhelming. So I dragged my roommate home, we’d been out together, and I called.
The first inclination I had that something was wrong was my dad answered the phone. My dad NEVER answered the phone. I didn’t wait for why are you calling, or how have you been. I simply asked what’s wrong?
“Your brother has ALS.”
“Lou Gehrig’s Disease.”
I dropped the phone. I knew Lou Gherig’s disease. As an avid baseball, Yankee’s fan, I knew all about the disease that had killed one of the sports greatest players long before his time. Or at least I thought I did. Till my dad started talking.
Maybe 5 years to live
My funny, best guy to have around little brother was going to die.
The worst part.
I was in Seattle. My parents were in Vegas. My brother was in Australia.
My roommate picked up the phone and got all of the information from him. The doctors were running a second set of tests. They wanted to make 100% sure they had the right diagnosis.
The really scary part. He was already paralyzed.
So I waited. I couldn’t wait by the phone. We arranged a time each night where they would call me and tell me if they’d heard from the doctor. For 3 nights the answer was no answer. Then came the new diagnosis.
A disease that closely mimics ALS, but doesn’t kill you. In some places it’s called the French Polio.
Ever since then whenever I’ve heard of someone having ALS or there’s been a campaign for it I’ve been right there. Because even though my family member ended up not having it 30,000 other American family’s were dealing with it.
There is no funding for this disease. There is no research. There is only one drug and that isn’t a very effective one at that.