You hate it when people describe having Parkinson's as a "fight" with the disease. What’s a better way to describe it?
I prefer the poltergeist metaphor. It captures the malicious whimsy of the disease. The weirdness of Parkinson’s is so thorough; it doesn’t seem possible that it could all be coincidence.
WHEN I CAN’T WALK FORWARD I’VE LEARNED I MAY TURN AROUND AND WALK BACKWARD.
Many people with Parkinson’s who are unable to move normally while awake, may fully act in their dreams. I know a guy that bit his wife, hard, in his sleep. It’s so contrary, it feels deliberate. Unlike the blind havoc created by a disease, it’s like a sentient being has thought it out to torture you.
You were a newspaper cartoonist, a professional at the dynamics of humor. Is there a relationship between humor and pain?
Humor is rooted in pain...It’s a way of redeeming situations that become too much. The worse things get, that’s when you really need humor, until things get so bad you can’t even make a joke. Then you’re really fucked.
How has the disease changed your physical drawing practice?
With Parkinson’s, the lines were not going where I wanted, they went where Parkinson's wanted. Eventually, [drawing with the disease] became a collaboration with forces I can’t control. If the lines won’t go where I want them, I let them lie there and work with it....Also, I had to simplify. Parkinson's made me pare things down.
Another thing that happens when you're a newspaper cartoonist, you say, is that you get cynical. You talk in the book about the experience of being cared for by competent people. How did that change you?
I used to look for the biggest bozo, liar, or breach of human decency in the preceding 24 hours, then do a cartoon about it. That skewed my view of humanity toward misanthropy. Then I had brain surgery so complex and audacious, it forced me to acknowledge there were worthy people devoted to improving life, and having extraordinary success at it.
You discovered early that exercise eased your symptoms. In the book, you describe a voice inside that told you to work out as the Spandex Angel. Can you talk about that?
Exercise is crucial. First, it can reduce symptoms by 35 percent when done right. It can help prevent falls, which is huge. It gives you a critical bit of leverage, an antidote to the helplessness instilled by the mantra that PD is progressive, disabling, and incurable. [The more you] intervene with exercise… the longer you maintain your quality of life.
In the beginning of the book, you describe your wife, Pam, confronting you about suicidal thoughts. Can you describe that interaction?
Pam wasn’t having any suicide bullshit from me. She was genuinely angry at me for considering it. It was a turning point because I had no choice but to cope.
Has having Parkinson's changed how you see other people's pain?
There’s a perverse urge to redeem Parkinson’s, to find a silver lining, to say it made you a more sensitive soul… It’s not that Parkinson's has redeeming qualities. It doesn’t really. It’s how you react to it.… There is no explanation for why one person deals with having Parkinson's and why another doesn’t…The disease can sabotage you in so many ways. As much as you want people to struggle against it, sometimes they don’t, and it’s because they can’t. You are never more humble than when you try to shake your head “no” and it will not shake.… I will say it; I became alert to the obvious: that practically everybody is dealing with problems and complications you don’t know about.
THERE IS A VEIL WE ALL HAVE; THE VEIL IS GONE IN PARKINSON’S.
All that stuff you skate over all the time; the ice is broken and you’re falling through. Everything anyone has is a provisional gift, a gift that might be snatched away in your next breath.