A friend of mine has ALS.
Who he is, doesn’t really matter for you to understand the story. He’s my age and I’ve known him for over a year now. Those of you who know me, will not know who he is.
He has been blessed with children –nearing high school age now.
He’s a man’s man. He can fix a car without many tools, without opening a manual, and he wouldn’t even consider a Google search to get the low-down. He drives his motorcycle to work on days when I’m bitching about how cold it is in my Jeep. He’s sharp too, literally; knows C# like he created it himself. Played guitar back in the day and had fun with his band. If you got yourself into a bar fight, he would have your back, you could count on it. Clearly, not he’s not afraid of being hurt, scarred or being temporarily uncomfortable. Stuck on the roadside or in need of bail? He would be at the top of my emergency call list, regardless of the trouble I found myself in. And there aren’t too many on that list.
And now, it’s almost official. After many months of speculation, discussion, tests and waiting weeks for results only to have more tests, the verdict is almost in. During the Summer, when they thought it might be throat cancer, we had a heart-to-heart. When they ruled out cancer, ALS was looking more likely with each month that passed and every test that failed to be something easy to treat and survivable. Just one test left and then it’s official; already a labeled motor neural disease – but most likely an aggressive strain of ALS.
This will not be pretty. He’s already avoiding the phone because he is occasionally hard to understand. He can’t get enough air in to get the words out. The frustration is obvious in his face. He wants to communicate more, but is clearly choosing his words to be as concise as possible. He doesn’t have time to waste and the number of breaths he can take on his own drop daily. He clearly appreciates it when you get something quick and don’t waste time with stupid questions or asking for meaningless details. People who say there is no such thing as stupid question, clearly aren’t counting the days with a mark on the wall. When he eats or drinks, he now frequently wipes his mouth to make certain he isn’t spilling or making a mess. Earlier this week he had some kind of stain on his shirt – guess he missed that one. I guess we’ll need to get use to that.
Six weeks back, I made him a CD. I haven’t burned a mix CD in many years, but I felt compelled given the situation. When I was going through my bout with Cancer, I listened to a lot of Warren Zevon and Cat Stevens. Maybe it was an equal balance of dark and light that I needed. But when I finished the disc, I didn’t even listen to all the way through once before I realized that it would be a mistake to give it to him. It was all Warren – way too dark. Does someone with neural networks shutting down by the hour really need to hear “My Shit’s Fucked Up”? Is that really helping in some way? Or would the near lullaby of “Don’t Let Us Get Sick” allow him to sleep better at night? My guess is that if I were in that same position, I wouldn’t be spending much time sleeping.
We had lunch this past Friday. We talked about music and going to see a friend’s band with our wives. I sincerely hope that happens and will do my best to make certain it does. But out of the corner of my eye, without calling attention to it, I could see he was having a hard time choking down the Mexican meal we shared. My wife explained to me later that without throat muscles working properly, swallowing depends heavily on gravity and making certain your food is chewed well. But I could see, that even chewing is starting to get difficult.
A month ago, when the verdict about ALS seemed eminent, and the only remaining question was how long, we talked again early one morning. As usual, he was concise with his words; “I’m not afraid of dying, but I worry about what will happen with my kids… college.” Not having children of my own, I thought about that comment for a while. What about high school and the dances, the dates, best friends, sports and the prom? Will he see any of it or all of it? And what about college? How can he make sure his kids have the ability to get an education and create a future for themselves. If he’s not there what words of wisdom, support and love will they miss out on? My sincere hope is to answer that question with “none” but reality doesn’t seem to be in synch with the hope.
I don’t have any great conclusions here. There very likely isn’t going to be a happy ending and hopefully the moral is obvious. The reality is going to be that a wife will lose her husband and daughters will lose a father at an already awkward point in their young lives. I pray that they will always remember him as he was and not the person deteriorating before them. I am going to do all I can to make sure he’s not treated like a sympathy case, but I already see others welling up when he’s around. I’m going to remind him to enjoy everything he can while he can; music, sex, food, art and beautiful 70 degree nights in the midst and mists of November. I’m going to do everything I can to work with him to create an amazing web app and a company with the time we have that will provide him and his family with an income that will help him rest easier. At the same time, for the couple hundred people who read this, I urge you all to do the same.
Live your lives while you can and, in the immortal words of the late Warren Zevon, “Enjoy Every Sandwich.”
-pjc