It has been brought to my attention—again—that I expend a lot of energy giving hemophilia a rather rosy, if not inflamed, glow. It seems I give the humorous incidents precedence and attempt to keep the painful truths behind a curtain, safely out of sight. 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 playing tricks on interns and making crippling knee hemorrhages sound like a minor inconvenience not worthy of treatment?
Several short, pithy rebuttals immediately spring to mind when I’m confronted with these kinds of people and accusations. One or two of my short, pithy rebuttals are, I think, actually possible with a couple years’ training, and a couple of the others would need some fairly relaxed family dynamics, but are otherwise doable. But, alas, aside from the immediate emotional satisfaction I would experience, they would really solve nothing. Although thinking of some of the more spectacular rebuttals still causes me to smile in a way that makes my wife, Michelle, count the cats.
First, most of the time I am talking about things that happened to me in the 1950s and early 1960s. Joint hemorrhages were a routine part of life and were often allowed to run their course without treatment—not because they weren’t considered serious, but because, especially in the ’50s, there was no effective treatment. We used to joke that without treatment, a knee bleed would last 35 to 42 days, but if treated with AHG, they were a mere five to six weeks. Believe me, if an effective treatment had been readily available, my parents would have made sure my brother and I got it.
Second, seeing the humor and the good that was around us was how my brother and I kept whatever tenuous hold on sanity we had. Fighting through the pain and fear was worth the effort because good and fun, and funny, were just as possible as pain and fear. It was our choice.
Handling the Fear
The truth is, 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 came when they were least convenient could be dealt with. They were frightening, but I learned how to handle them and the fear. (Remember the good and fun I mentioned.) But there are those little, half-perceived, secret things that flit through our minds, and even the most well-adjusted of us has a constant worry 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 darn left knee is puffy.
Could it be infected again? Michelle will have a meltdown if I have to have it replaced 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.
Expletive deleted, l have to get another PICC line.
And it goes on and on and on. How do I write about all these fears and the constant, never-ending worries so they are presentable and, more important, understandable?
Pain is Private
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: “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 re-create 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 an imagination can construct his or her own version of the emotions I felt when a girl’s father and her church told her it was a sin to date me because I was cursed by God with this affliction, or when I wasn’t allowed to join the Cub Scouts because I was a cripple and a drain on society. (Eugenics was a constant thorn in my side.) 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 to humanize the slaves in the average American’s mind because it presented the quiet, regular moments in a man’s life, along with the silly and humorous, alongside the big obscenities of slavery that made Jim human. The nights he and Huck would lie on their backs and watch the stars enabled you to see this person as a decent, average man—enough like you to let you 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 girlfriends, have to take Army physicals, and 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. Or at least give it a firm handshake.