I’ve been meaning to write to you for awhile. We’ve only met a few times, but as shared adversity tends to do, I feel like you and your family are a part of my own. While we probably wouldn’t have met if not for ALS, I’ve often found myself wishing we had been diagnosed at the same time. Given our similar situations with a young family and your sense of humor, I imagine sharing the journey into paralysis with you would have been a hell of a lot more fun.
But with all that you and your family have done for the ALS world, I find myself incredibly grateful to have known you at all. I know guys don’t normally say this kind of thing to other guys, but you’re a hero to me. Forget Superman, Michael Jordan, or the latest over-hyped celebrity. You have been defying a killer disease with courage and tenacity for more than 8 years. You’ve done more than fight to stay alive, you’ve essentially made ALS irrelevant to how you approach living.
You inspire me to do the same. Whenever I question my ability to keep going, I think of you and your son Alex, and how you interact. You are a wonderful husband and father. I recall goofing around with Alex at a party in your parent’s backyard. We chatted and played with pop cans for about 10 minutes. In that little time it became clear to me: he is a wonderful young man and loves his father infinitely. I aspire to the same relationship with my daughter.
I’d also like to thank you for all of your practical advice. I share your willingness to embrace technology and have learned a great deal from your progression to wheelchair, feeding tube, and ventilator. I now have the same wheelchair as you, a damn nice one I must say. Perhaps it’s because I’m an only child, but I’ve come to think of you as a kind of older brother, setting an example for me to follow. Minus the beatings.
Most importantly, I want to thank you for allowing the world into your life. As unwanted a role as it might be, you and your family have proven to be outstanding leaders in the ALS community. Honest, open, resilient, and above all, human. My family and I are and always will be committed to supporting you and the ALS Therapy Development Foundation.
Your brother in the fight,
Epilogue: Stephen Heywood passed away last Sunday morning following the accidental disconnection of his ventilator. I join the entire ALS community in sending our love and sympathy to his family and friends. I meant to send him an email like this some time ago and never got around to it. I hope he receives it somehow. While deeply saddened, I celebrate his extraordinary life. He is still my hero.