Here's a great video of the results of a bird strike that I found on a blog. The bird strike occurs seven seconds into the video, which requires Windows Media Player. Microsoft will do to your computer what the bird did to this plane.
One thing about this video that no doubt you'll notice (and that I'll describe for you in case you don't have the sucky Windows Media Player), is that the pilots remain controlled and functional the whole time. Sure, it's an act, of a kind. But it's also professionally useful, and safer to be calm.
I feel like my body is this plane that has ingested a bird. I am calm, in the sense that I'm not panicking, and I am happy and content with my life. By the way, that's just my nature, not my achievement. I don't claim credit for lucky biochemistry. If you do panic and fret, I understand that, too.
So I started writing this at about 3:20 AM, after waking up and coming downstairs. Things seemed a bit too warm and stuffy upstairs. Plus, while shuffling over to the bathroom, I had an idea for a children's book, with illustrations, about ALS.
Calmly, like the pilots in the video, I tell you that I weep when I think about what my decline is taking away from my kids. Weeping is part of the procedure for ejecting from the plane. It's a good release, and no one holds it against you, because it's SOP.
But since I knew I might start weeping when thinking about my kids, I came downstairs to sleep on the fold-out in the study. My lovely wife heard the sobs and came down to comfort me. But she has germs that have made her vomit, so she can't hold me and hug me. I've lost enough weight already, and a round of vomiting -- though it might not kill me -- is the very last thing I need right now.
So she told me instead that she wishes she could fix this problem for me and make it better, and that what makes me cry makes her cry too. After thanking her, I told her that I didn't want to keep her awake, or get her germs, and that she should go back to bed.
I've been intermittently weeping for over an hour. I couldn't go to sleep, because I had to think out this idea. So I turned on the computer to get it out and make it settle. Through the wall, she can hear me, when the story makes me sob.
The strength of that woman. I swear.
The thing that kills me (sorry for the pun) about this condition and my kids, is that they will want to know, or they do want to know, what is really going on, and how I feel about it and how they should feel about it. That's part of what I was trying to fit into the kids' book idea I worked on in my head. I really want to be able to talk with them about this, and whether it makes them sad or scared. But having such a discussion could make them very anxious, destroy the sense of safety that children need. So instead we've given cheerful little explanations of my "nerve signal propagation issue" with a drawing of nerves carrying signals from the brain to the muscles -- without raising or hinting at the possibility of Daddy's death.
My daughter is afraid of skeletons, and tried to hide her eyes from them at Halloween.
If you suggest that the kids already know, or suspect, and that I really ought to sit down and talk with them about my death, then I spit in your face, dear gentle, facile blog reader. I am not going to frighten them. You piss off.
Instead, since I REALLY want to talk with them about it -- in my own words -- I thought of this kids' book with illustrations. It's not the kind of thing you could give them now, in advance of some of the events described. But I want to create it now for them to have later. I'm not done mentally composing it, but here are some notes:
I used to have a dad ... like THIS! He would play chase, and wrestle, run, and play basketball... He even repaired part of the house. He showed us how to nail up a wall. You could see sparks when his hammer hit the nails! ...But later, he just sat around. He didn't come with us on hikes. He didn't pick us up anymore. And he had this weird laugh. Sometimes you couldn't understand what he was saying. "Ah wuf hoo?" His basketball shoes and his hammer must have missed him. I miss him. I miss my old dad. And I asked my mom: Do you think Dad doesn't love us anymore? Is that why he's going away? [Graphic of little dad receding smaller and smaller in a wheelchair?] Mom said no. Mom said that even though Dad's face didn't move anymore, even when he couldn't pick us up, when he couldn't move, or talk, that he told her to tell us that he loves us more than anything in his life -- ever! Even more than kites, or nectarines [image series of dad as a boy], rockets, or books. She said that Dad said that we are the best part of his entire life, and that he loves us, always, tenderly, the way a coat keeps you warm all over on a chilly winter day, or the way you feel about the sun on a perfect morning. She said so. And he said so, by telling her to give us this book, so that we would always know that he loves us.
And see, Jansenist, it hasn't hurt me a bit that I've spent so many hours playing Civilization III. It's all part of the SOP. Maybe now, some sleep?