Okay, so Joe died. We knew he would. Everyone does, right? But we’re sad, we’re disappointed, since we really didn’t want him to die of ALS. We wanted him to be the one (or one of the few) who figured out how to turn this disease around on its path, show it the door, pull himself back together cell by cell, get up out of that wheelchair, and start walking again. Up to podiums to talk about his journey, inspiring others to follow him. Onto stages to accept the acclamations he deserved. Down the aisle with Julie when she got married. Through the woods with Diane when he was old. No, we wanted him to die instead with dignity, say, clutching his chest in the middle of a joke and keeling over into his cream pie at age ninety-nine.
We sure didn’t want ALS to win. Joe was the underdog from the beginning, by all rights. I want to say he kicked its ass, gave it a whuppin, showed it who was boss, etc... but idioms of might are not appropriate in describing Joe's fight, since his muscles were slowly deactivated by the disease. Joe's many triumphs came from curiosity, from skepticism, from communication, from investigation, from thoughtfulness, from introspection, from prayer and from humility. That being said, Joe was just like Rocky: he went fifteen epic rounds with inspiring courage and faith, (and we all got to take the journey with him,) so it’s not like he lost, really. Even at age 61, he still lived longer than your average NFL player. To use a word the kids like these days, Joe pwnd (poned) that lame-ass disease.
Look: the truth is, death isn’t so bad. It’s part of life, it happens to everyone, and reports keep coming in that it provides some relief to this problem of living. The worst thing to me about Joe dying is not getting one last email, one last blog post. Joe so faithfully shared his adventures in healing that I want to know what it was like at the end. I want to know what he thought about, what he decided, if he decided anything. I want to know what it felt like and what he said and who was there. I want to know what he understood, and if indeed he got a final flash of insight that wrapped up his research somehow. I want to know what it felt like for him to suddenly and finally be released of his body.
ALS, ALS, ALS. Joe’s life was defined by a greater drama when that gene activated, but ALS is not who he was. Joe was a strong and positive person who saw life in his own way, managing this and that with humor and with love, magnetically drawing good people to himself. In our living room, Joe once laughed hard at my husband’s favorite joke. It’s about a guy who was traveling through Europe when his brother called with the news that his cat had died. “That was so cold and cruel, to tell me the news like that,” he cried. “What else could I have said?” asked his brother. “You could have broken it to me slowly,” the guy sobbed. “You could have said, ‘the cat climbed up on the roof.’ And then called the next day to say ‘the cat finally came down, but caught a cold.’ And then a few days later, you could have said, ‘The cat’s cold got worse, and we took her to the vet.’ And then you could have said, ‘there were complications.’ And then a few days later, ‘The infection couldn’t be stopped, and we had to put her down.’” “Oh, I see,” said the brother. “Yes, that was very insensitive of me.” The guy in Europe sighed, wiped his tears, and said, “Well, as long as we’re on the phone, is there any other news?” There was a long silence, then the brother said, “Um… well, mom climbed up on the roof.”
Today, when I got Dan’s email, I cried. Then my husband asked me if Joe had climbed up on the roof. Oh my. There's a thought. The racket he must have made in that wheelchair…!
But seriously. Diane, you are my hero, for partnering gorgeously with Joe and his troublesome gene. Julie, and Dan, your lives have gotten off to an interesting start and you are both magnificent people. I look forward to seeing you enjoy every adventure life brings you, with your dad’s wonderful spirit watching over you. And Joe, you're not gone, you're with us all. I can't wait to read your book.