A recent viewing of Les Miserables at the Orpheum, of all things, reminded me of the summer of 2010 when, like the main character but for different reasons, I had to seriously analyze my own mortality and what it meant for raising my daughter. For more than four months that year my body deteriorated to the point where I had to assume, for the first time in my life, that I wouldn't live to the ripe old age I'd hoped for. And if I had to calibrate my life goals downward, that meant I had to think hard about what I owed my daughter with the life that I had left. It wasn't like I was going to keel over suddenly but cashing social security checks didn't seem guaranteed. It's going to take a bit of back story to set this up.
I've had juvenile rheumatoid arthritis in my hips and knees since age 13. To keep this shorter than a Stephen King novel I'm going to summarize hip and knee JRA like this: it's a drag. But that ain't nothing compared to what arthritis is like when you get it in your back and neck, which is what happened to me in late spring of 2010. When arthritis moves into your back and neck it's known as the Scrabble-rific Ankylosing Spondylitis. During the day I could barely function; every movement hurt. At the office, I looked forward to conference calls because I could close my door, put my headset on, mutter something every once in a while, and the rest of the time put my head on the desk and simply try to exist. At night I was completely useless, the aches and pains so bad that I often went to bed at 7. Karen was thinking, "What, this is all I get?" My situation was obvious to most: over the years I've gotten good at disguising a limp but I couldn't hide the fact that I couldn't turn my neck.
Along similarly cheery lines, rarely has a story been more aptly named than Les Miserables. Justice and fairness were in short supply in early 1800s France and Jean Valjean enjoyed even less than the other dregs of society depicted by the actors. Pursued by Inspector Javert for most of his life for stealing a loaf of bread, Valjean finally carves out something of a life under an alias and agrees to adopt and care for the daughter of a woman whose own misery index was off the charts. Hey, let's set this zany story to music! His life becomes a crusade to protect and nurture the daughter, interspersed with a song here and there about how crummy things are.
Back to my miserables, the worst case scenario for hip and knee arthritis is joint replacement, something I had to consider as early as age 17 but have skated without so far. What has made me semi-normal over the years is fairly powerful anti-inflammatory medication. Helped with hangovers too. Unfortunately, it didn't make a dent in A.S. The worst case scenario for Ankylosing Spondylitis is, uh, you grind to a halt. There is no vertebrae replacement surgery. My doctor's proposed treatment cost $2000 per month and he wasn't sure it would work. I was staring complete disability right in the face.
It was easy to assume that there was no way I was going to live to an age where one gets to enjoy being cantakerous with this amount of wear and tear on my body. It was draining just to get through a day with minimal activity -- there was no way I could handle years of this. I started worrying about supporting my family. And that led to wondering how much of my daughter's life I was going to see. Again, I wasn't going to expire in the next couple months, but could my body take this beating for another 20 years? 10?
Seeing my daughter have kids? Maybe not. Seeing her get married? Iffy. That could easily be 20+ years from now. Jean Valjean protected his adopted daughter until he was certain she'd marry a decent fellow. In Napolean-era, lower-class France that was about the best a dad could do for his female offspring. If you simply kept her out of prostitution you were ahead of the game.
Goals are a bit loftier in our current age, Toddlers and Tiaras notwithstanding. I settled on getting her through college as the minimum for which I needed to stick around. At that point, my work is mostly done anyway and she should have the tools to make her way through life and figure out the rest. That meant squeezing out 12 or so more years and being able to work long enough to cover the Lexus-a-year tuition costs.
Arthritis is my Inspector Javert, the man who ruthlessly hunted and hounded Jean Valjean across decades. But arthritis won't throw itself off a bridge and it definitely won't bring the audience to its feet with a rousing solo. The provisional happy ending to my story is... the spendy medication is working for me. The manufacturer helps pay for it (And how much are they making on this if they're paying most of my costs to take it? Let's get Anderson Cooper on this.) and the weekly shots have returned me to what passes for normal. But there are no guarantees that it will continue to be affordable or that it'll continue to ameliorate my condition.
At the end of Les Mis, which coincides with the end of Jean Valjean's life, he sees his daughter get married and he is overwhelmed with relief and love. About 2/3 of the way through the performance I had made the connection between Jean Valjean's epic journey and my atypical circumstances. Even though I'm mostly past the fear of my body grinding to a halt, Les Mis reminded me of the tremendous responsibility of getting my daughter into a sustainable adulthood. I was a lot more emotional at the end of that musical than probably any other male in the theater, most of whom were probably thinking, "What kind of glare will I get if I pull up ESPN on my iPhone right now?" MonsieurValjean, I know a little something of what this means.
