If you’ve been following this blog, or if you know me, you know that I never say that ALS is unfair. And you know that I’ve said before that I don’t want to be the person in the position of deciding who gets to live, who gets to die, who suffers, and who has a happy life and I still believe that with respect to me. But on the 4th of July, for the first time, I experienced a profound sense of the unfairness of ALS when I met Corey and Johnny, two absolutely gorgeous young teenage boys, both of whom have ALS. Bobby Abernathy, my favorite cowboy, introduced me first to Johnny’s family. I wasn’t sure which one of them had ALS, except for the very slight shift in the tone of Bobby’s voice when he introduced Johnny. So I asked Johnny, “Are you the one with ALS?” and he responded, “Yeah,” and I said “Well, that’s bullshit!” Bobby quickly said, “You know, Carla uses some colorful language, you’ll have to excuse her.” Johnny and his mom simply said something like, “No, I think bullshit’s a good word.” I spoke briefly to his parents and his dad said, “It’s not fair,” and all of a sudden I realized that my plan of accepting the randomness of ALS had stopped where these 2 boys’ lives began.
Though just as sweet, Corey was a vivid contrast to the quiet Johnny; cheerful, outgoing, willing to stand toe-to-toe with this outrageous middle-aged woman, as he showed me his cane made out of a bull’s penis.
I felt like I was watching young men go off to war.
It has always seemed so stupid to me that we send young, gorgeous people off to die for us when really we should send old people, who’ve already had a chance at life. Also, old people are a lot meaner and crankier in general than young people (yeah, I said it!). Just try to get in front of an old person in the line-up at the grocery store. They will fucking cut you! Those old people can be mean and probably much better at killing the enemy. Plus, they don’t contribute as much to society. They complain all the time about their aches and pains – hell, they could probably kill the enemy just by explaining what’s going on with their joints and I dare you to blog comment without sounding cranky, old people. Simmer down and take your irony supplements.
But I digress as always.
These boys were like beautiful young soldiers and it was all I could do to hold it together. I just tried to do my Tourettes-like joking so I wouldn’t just burst into tears in one of those awkward middle-aged moments that makes teen boys cringe. It made me think of the Archibald MacLeish poem, The Young Dead Soldiers:
“The young dead soldiers do not speak....
They have a silence that speaks for them at night and when the clock counts.
They say: We were young. We have died. Remember us. ….
They say: Our deaths are not ours; they are yours; they will mean what you make them…..
They say: We leave you our deaths. Give them their meaning.
We were young, they say. We have died. Remember us.”
Our deaths are not ours; they are yours. I looked at their parents. I just couldn’t imagine what they were going through and I looked over at my dad and I thought about all those times he wished that he could take the ALS instead of me, and I thought about my son and how easy it would be for me to take a bullet for him or jump in front of a big truck and push him out of the way. I mean really easy – a no-brainer. I wanted to take on some weight for these boys and their families. I wanted to take their ALS from them, but of course I already have it. That may sound like bullshit, but it’s not.
When people talk about their sadness about the death of a young person, they tend to talk about the person they might have become. I don’t. Their loss is sad enough in real time. I don’t need to think about what these two kids might have done, I grieve for who they are right now. There’s nothing to me more beautiful than someone in their teens or early twenties. They were always my favorite age to teach, because they are a journal with mostly blank pages, a walking, talking action adventure, a lesson in sincerity and integrity. That’s what I mourn.
I had a dream the other night about Mac’s wedding. Kathy, Edith, Wendy & Kris were in a circle with him and they were all dancing the mothers- dance-with-grooms dance. When I woke up my face was all wet and my tears were still warm. I don’t really know what is harder: to leave a beautiful boy on his own or to watch him go off to fight a battle that is too many miles away from you. I don’t know how any of this can ever be okay for those 3 young men.
Edith and I went ring shopping yesterday. I’ve never had a really nice piece of jewelry in my life. If I’d had a nice wedding ring, I probably wouldn’t have pitched it into the Bay, I would have just hocked it. But I didn’t. So I got this idea that I really wanted Mac to have a beautiful engagement ring to give to some one, someday and be able to say, “This was my Mom’s.” For some reason, it makes me really happy to think about that. I spent money that I have no business spending and that I should be saving up for the miserable fucking rainy days ahead, but fuck it. If I can’t dance with him at his wedding, at least a part of me will be there.
P.S. If my daughter-in-law is reading this in years to come, it’s okay if you hate the ring and want to get another one.