This is my ALS: A Love Story. It is about my wife, Ali.
On May 17, 2016, as Ali and I were stuck in traffic heading to the neurologist I asked, “If we get bad news today, can we stop at the first bar we see?”
Ali said, “I’ve been waiting for you to ask me that.” To which I responded, “Well?” And then Ali, in the kindest of ways told me, “Boomer, that would be quitting.”
But later on that day in May, some four hours after that initial conversation. Ali and I were crying pretty good, stuck in traffic. (I mean, the doctor broke our hearts, but the traffic was killing us!). I turned to her and asked, “Does this mean you won’t marry me?” Ali turned weeping to me and said, “It only makes me want to marry you more, let’s go to the courthouse in the morning.”
It takes one hell of woman to sign up for this. As a friend said then, which may or may not be true, “You’ll get her best years, and she’ll get your worst.” One thing is very likely to be true, I’ll make her a widow much too soon.
We were engaged 45 days later. And married nearly one year ago.
I just can’t express enough my love and appreciation for Ali. I don’t have the words. For those of you that don’t know, Ali was my High School sweetheart. I spent the best year of my life dating her. We screwed it up in college and found our way back to each other in our early 40s.
We promised each other the next 40 years. We wouldn’t screw up the second chance, the next 40 years were ours, together. We planned and dreamed about our life together and the adventures and happiness to come.
Then it happens. Your squash game falls apart and you start twitching. Falling for no reason. Unable to bend your legs. Can’t sleep, although exhausted. Bad back, must be. But things aren’t right, and the doctor tells you have ALS. “No treatment, no cure and 50% of patients die within 2 years. Get your affairs in order.” Dreams of 40 joyful years together blown up in 2 sentences. Boom. Done. Over.
In my opinion, that’s not the real tragedy. Not the two to four years of physical suffering and mental anguish that comes with this disease. It’s the time I won’t get to spend with Ali. I think it’s worse for her. All she can do is watch and help and comfort. I have the relief of death, she has the pain of living.
She was right, Ali, on that day in May.
Because I’ve lived, laughed and loved so much in the last year. I’m glad, too, that my children won’t remember me in a wheelchair feeling sorry for myself.
Instead, they’ll think of me in moments like last night…the moments to live for, with green hair, celebrating my beloved Philadelphia Eagles at the Super Bowl. And that’s just one of many amazing, once-in-a lifetime moments, I’ve spent with Ali.