Jay Smith, diagnosed in April of 2014 at age 36.
I was first officially diagnosed with ALS on April 1, 2014. I’ve always been a fan of practical jokes and pranks, but I was at the Mayo Clinic in Rochester, Minnesota, and while my neurologist seemed a bit like a gal who “likes to let loose” on the weekends, she didn’t seem like the type to deliver a terminal diagnosis as a joke. It’s really a shame because she had a very good poker face. After about ten days of being magically whisked away to Rochester, it was confirmed, I had ALS. My wife and I affectionately call that the “worst week of our lives.” In fact, we were so happy to leave, the flight attendant on the way home asked us if we were on our honeymoon.
I like the fact that I can call that week at Mayo the worst week of my life. I left all of my tears, fear, pity, aggravation, and lifelong distrust of Minnesotans behind that week. I left with a new sense of motivation, determination, and fight to see it through until ALS is a treatable disease. I’ve come across a lot of people who say “It seems like a lot of younger people are getting ALS.” The fact is young people have always gotten ALS. Stephen Hawking was diagnosed at twenty. I think the difference now is that people realize that this is a curable disease and if we all band together we can be around to see this fight won. More people aren’t getting ALS, but a lot more are ready to fight.
I often hear people say that they are doing their best to fight, but know somewhere in the back of their mind that it’s a fight they can’t win. I have almost the opposite experience. Even though my Bachelor’s Degree in Fine Arts doesn’t qualify me for any kind of medical hypothesis, I know I’ll be around for a cure or at least a treatment. I won’t die from ALS, I just know it. Now this isn’t an invitation for something else bad to happen! I just know, somewhere in the back of my mind, that I’ll see my kids—now 4 and 7—graduate from college, get married, and have their own kids. There are too many people not accepting this as a terminal diagnosis, raising awareness, and refusing to go home and die. The more people willing to use their voices, the more attention we will get. There are also way too many smart people working on ALS research for it not to be treatable very soon. I encourage every single person diagnosed with ALS, no matter how defeating it seems, to stand up and say “I will not die from ALS.”
My friend Laura hopes I will be the Magic Johnson of ALS. Before Magic Johnson, AIDS was a deadly epidemic, and it’s now a very treatable disease. I know a lot of people still like the image of Lou Gehrig, and yes, I agree he’s an insanely inspirational person, but instead of a number 4 Yankees jersey, I wear a number 32 Lakers jersey and win like Magic.
Since I’ve been diagnosed people have asked me, “What’s it like to know you’re going to die?” I respond with, “Why don’t you tell me?” Ok, it has never happened quite that directly, but it’s what we’re both thinking. The truth is that once you accept the fact that life is terminal, no matter what your health condition is, everything becomes more beautiful. I know I’m going to die someday, but it won’t be from this.