It has been brought to my attention that I expend a lot of energy giving hemophilia a rather rosy glow. It seems I give the humorous incidents precedent, and attempt to keep the painful truths behind a curtain, safely out of sight. That perhaps I trivialize the condition to the detriment of all those who must struggle with its realities every day. How can I expect society to understand the seriousness of our pain and struggles if I keep talking about Castor oil induced fifty yard dashes, and making crippling knee hemorrhages sound like an everyday occurrence not worthy of treatment. I am making light of the most devastating thing to ever happen to these people.
Several short, pithy answers immediately spring to mind when I get confronted with these kinds of accusations, but aside from the immediate emotional satisfaction I would experience, they would really solve nothing if I were to utter them. The truth, as I see it, is that I cannot make anyone not living the life understand it. Once you get beyond the glamorous bleeding and the dramatic joint destruction, ours is a surprisingly private hell. The sudden, even life threatening bleeds that come when they are least convenient can be dealt with. They are frightening, but we learn how to handle them and the fear. But there are those little, half-perceived secret things that flit through our minds, and even in the most well adjusted of us there is a constant worry always simmering just below full consciousness. I feel weak. Are my kidneys bleeding again? Do I have another ulcer? I don't think I can take another endoscopic exam. That damn left knee is puffy. Could it be infected again. Or is it bleeding. What was that twinge in my ankle? Oh, damn, not another ankle bleed. I can't write when I'm taking morphine. Shit, I hate accessing that port. And it goes on and on and on. How do I write that so that it is presentable, and more importantly, understandable.
One of the best nurses I was ever lucky enough to have care for me when I was very young said something that completely shaped my life. She said, "Happiness is public. It draws people to you. Pain is private. It pushes them away." And since by nature I tend to be almost annoyingly optimistic, and do not worry too much about the darker aspects of my life, at least when there are witnesses, it is hard for me to recreate the trauma. I feel I have presented the nastier aspects of the condition honestly, and forthrightly when they have come up in the narrative. Surely a reader with half of an imagination will be able to construct his or her own version of the emotions I felt when a girl's father and her monseigneur both told her it would be a sin to date me, because I was cursed by God with this affliction, or wasn't allowed to join the Cub Scouts because I was a cripple and a drain on society. (The guy all but said Hitler had the right idea.) It is my strongly held opinion that I shouldn't be expected to bring all those feelings out for the entertainment of the masses. A simple reporting of the event should suffice. The color commentary I leave to the reader.
Finally, it is my considered opinion that the average person internalizes the kind of message I'm trying to send more completely when there is humor involved. Huckleberry Finn did more than practically any other book to humanize the slaves in the average Americans mind BECAUSE it presented a the quiet, regular moments in a man's life, along with the silly and humorous. It wasn't the big obscenities of slavery that made Jim a Human, it was, among other things, the nights he and Huck would lie on their backs and watch the stars; and it was only by seeing this person as a decent, average man—near enough like you to enable you to understand him—that allowed slavery to be seen as the obscenity it was. And like Mr Clemens, but with considerably less skill and talent, that is what I am trying to do. Show that we are just people who take senior trips, do stupid things because we have girl friends, have to take Army physicals, and just generally lead the same kind of dull, probably meaningless lives everybody else leads, but with blood that won't clot.
It's a bizarre world out there, and every attempt to make it serious and dependable just forces it to be that much more bizarre and weird. So embrace the silly.