A promise

 

Last week I was accused of being incapable of sustained seriousness, which is, as they say, a true fact. I have always felt that life is fundamentally absurd, and I like to have a good laugh at it. (Not that I don’t have deep thoughts. Just that usually they go away after a while.) Later I was accused of being angry and bitter, not to mention passive-aggressive (in my defense, I have to say I don’t think there’s anything very passive about my aggression).

 

Here’s the thing: I am partial to Greek sailors and 1800 tequila and raspberry pink t-shirts. I listen to country music and sing along with made-up lyrics about the day my mom got out of prison. I’ve spent a large percentage of my life with purple hair, wearing electric blue snakeskin heels.

 

Which is why I can never understand why my life has to be so dramatic! With so many life! Or death! moments in it. If the universe has a guiding intelligence, I would some day like to ask what it was smoking.

 

That doesn’t mean I’m not interested in writing one true thing. Or that I don’t undertake most work-related endeavors with a touching earnestness. Or that I don’t treasure my friends, knowing how fragile human bonds can be. I hope I don’t have to explain that people are complicated creatures, even those of us incapable of sustained seriousness, except for those moments when we are angry and bitter.

 

I get letters and e-mails all the time, mostly from people who want to talk about something I’ve written.  There are people who’ve read the Dojo Wisdom books, and they tell me things like I read a lesson a day from Dojo Wisdom, and it keeps me sane. Thank you so much for your work. And then they tell me about whatever problem they are having, and why they picked up my book. These are never minor problems, like they can’t get their toddler to eat green beans. And I listen to what they say, and I write back with something like Thanks for writing. It means a lot to me. I am so sorry you’re going through that. And then I feel dumb, because crap. There isn’t anything I can do. There isn’t anything I can change. There may exist people in the world who can change the world, but I am not one of those people. I can’t even stop eating ice cream when I’m upset, let alone do anything constructive about peace, justice, and profound human suffering.

 

There are people who read my pieces (mostly on this blog) about the creative life, or who have come to me for guidance and feedback on their work. Publishing is a cold, capricious, and subjective business, and when you rip your heart out and put it on the page, and everyone shrugs, it hurts. It hurts deeply. So mostly I say things like If you have a story to tell, then tell it. Don’t let a cold, capricious, and subjective business stop you from that. Don’t ever let them stop you. But, you know, really. Is that the best I can do? I dug deep and that’s what I came up with? “You go, girl”? That’s my best shot? Seriously?

 

And then there are the people who write to me about their children. These are beautiful creatures, maimed, imperfect, and there is nothing I can do about them, either.

 

Last week the aunt of a little boy named Alex wrote to me. She said, “I’m sure people are constantly contacting you, making you an Internet hero, and asking you for help with something.” And holy Christ, as weird as this is, it’s true (when they’re not busy accusing me of being angry, bitter, and incapable of sustained seriousness). Which is why I think I need to add this disclaimer: Look, people. I just came here to dance.

 

Because there isn’t anything I can do.  I will tell you that Alex is a little boy with tuberous sclerosis, the same disease my beautiful Jessica has, and I will tell you that he can’t live with his family anymore because of his rage and his self-injurious behavior.

 

It hurts my heart. I know how hard life is for children with this disease, and I know how ugly that decision had to have been for his parents to make.

 

When I expressed this to Alex’s aunt, she wrote back and said, “It is so extremely rare that people get it.”

 

I had to read that twice: “It is so extremely rare that people get it.”

 

Because, you know. How hard is it to get? To put yourself in the place of a small child, not in control of your body, not in control of your brain, thwarted in your attempts to communicate, to participate, to be part of the world; frustrated at your differences and your challenges; imprisoned by the horrors this disease inflicts on your mind and your body. Then to put yourself in the place of his parents, trying desperately to find ways to assuage the fear and anger and terror. Not being able to do it.

 

Not being able to do it. And then having to make the hardest choice of your life.

 

It’s not difficult to get that. It’s just not.

 

But I know what happens. I have been down this road before. Instead of responding with compassion, people blame Alex’s parents. You know they do. They say, “If Alex were my son, I would never . . . .”

 

Which, you know. Bullshit. Just bullshit.

 

Oh, damn. There’s my anger and bitterness showing again.

 

There isn’t anything I can do, not for Jessica, not for Alex, not for any of the children who suffer, nor for any of the people who love them.  There is nothing I can do. There has never been anything I can do. Except bear witness, and I will, for as long as I need to, and for as long as I can.

 

 

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You can read about Alex at his parents’ blogs; his father and his mother take different approaches.