I had a friend die this week. 43 years old, married 3 kids under 12. He was diagnosed with ALS a little over two years ago. We played basketball together in the mornings with a bunch of old guys – you see young guys won’t get up at 5:30 am to hoop – so it’s just a bunch of out of shape old guys leaning on each other trying to keep alive the dream. He was telling me something was wrong with his leg – “it’s not doing what I want it to do” – we both cracked jokes about getting old. Within a couple of months he could no longer talk or use his arms. ALS sucks!
He was a writer at heart – which I never knew – the disease gave him his chance to write – just sitting there in your mind all day, unable to move, gives you the motivation – technology allowed him to get his trapped thoughts out onto his blog. The worse his ALS got, the more he wrote. His last post was in his own words on the day he died – because he knew he was going to die – with ALS it’s just a matter of time, and usually very little time (what would you write to everyone for your last thoughts?). When I got the message – I was instantly heartbroken. When I read his post, I cried. I cry every time a reread it. No one should have to go through this. (Here is his final post)- I love the fact he didn’t sugar coat anything – until his final day he was real, genuine. This sucked for him and he wasn’t going to fake it for the sake of making someone feel better. He didn’t want to die. He wanted more time with his wife and kids. He wanted to live.
My friend spent his final two years or so pleading with anyone who would listen to have perspective. His list of worries before ALS:
His list of worries with ALS:
1. My wife
2. My kids
It shouldn’t take a devastating disease to give us perspective. We go around each day making small issues, big issues and worrying about stuff that we can’t even remember a few days later. Then life comes around and slaps you across the face and kicks you in the ass. I hope I learn from this. I hope I remember this pain I feel now. I hope they find a cure for ALS so no one else has to go through this.
As Curt would say – Fuck ALS!