That’s the cute little quote my son Dan wanted to put under his high school yearbook picture. “No, Dan. Please,” I had said. “Come on. How about Ralph Waldo Emerson or Gandhi or Woody Allen?”
Dan was diagnosed with diabetes at 9 months old. So his gallows humor was not out of nowhere. He’d been making jokes about his own death forever.
In a restaurant when he was 13, he would hold the pink saccharin packet in his right hand and the blue aspartame packet in his left and in a loud voice, brandishing one, he would bellow, “Brain damage?” and then wave the other one and joke, “Or cancer?” Very funny, Dan.
He drove a Harley, raced his 65HP outboard motorboat, and smoked Marlboros as if he had stock in the company.
Then at 22, when he was a sophomore at Bard College, he was diagnosed with MS and had to drop out of school.
As parents we did everything wrong you could do with a kid who had a chronic disease, much less two.
In the early years, we were so frozen in fear and felt so guilty, we spent much of our time trying to make life easier for Dan. In baseball he could have five tries before he swung out. When he forgot his math homework, I frantically drove it to school so he wouldn’t get an F. At Halloween I bought his candy from him, trying to make a game out of giving values to his booty; Snickers were $2 and Krackles were $6, Twizzlers were $10. He’d end up with a fortune, and still managed to sneak a spare bag of sugar, which he hid in the back of his closet. He had his cake and got to eat it too, which didn’t help his blood sugar or our relationship.
We tried starting a support group, we tried therapy, we tried punishing him.
When he was first diagnosed with diabetes in 1971, we couldn’t find a doctor who knew anything about infant diabetes, and then all those years later, when a second autoimmune disease hit, we couldn’t find a neurologist who would give us any hope. There’s nothing we can do, they would say.
At some point after many years of doing it wrong, and many late night sessions with a friend who was a therapist, I realized I was a student, and Dan was my teacher.
I started to use tough love with an understanding that that was what he had been waiting for all along, and that my guilt didn’t serve anyone.
I understood that his flirting with danger, his living so close to the edge, was his way of coping. He was mocking the Grim Reaper, poking the sleeping bear, goading the angel of death. He screamed “Why me?” for 16 years. And for 16 years I never had an answer. But something kind of miraculous happened. As he got sicker, he started to realize that what was happening to him was yes, horrible, but that his power lay in the way he reacted to it.
His anger subsided, he stopped yelling, “Why me?” and he started to understand how brave he had become. One day I walked into his room and I said, “Dan, I have a question for you. You can’t walk, your hands tremble so you can’t do your shot, you have two bedsores, you’re basically bedridden, now you’re having swallowing issues, and your girlfriend just broke up with you.” I used his mantra, “I just want to know, Why you?” He paused (he always had good timing), and he said, “Why not me?”
I picked up the phone and called my husband. I said your son guru’ed (I made a verb out of guru).
Dan died at age 38, 13 years ago. So he did die young, and he did live fast, and he did make a gorgeous-looking dead person. And all these years later, he’s still my teacher.