“Responding to Pain”

Originally published in the Winter 2017 issue of Dateline Federation

It’s always been difficult for me to analyze inhibitors as they relate to my hemophilia, as they’ve always been there. I don’t remember a time where they weren’t a part of my life. But now that I’m older, have had a chance to meet other hemophiliacs, understand different diagnoses (and the associated qualities of life), I think it’s become easier for me to reflect on what my inhibitor has meant for my life as a person with hemophilia. I’m happily at a point where I can analyze it without being overly pessimistic. There are better treatments available, and new treatments on the horizon, but even without those, I think I’m a much more contented person, even with this objectively burdensome presence added to my life.

The central difference between me and someone without an inhibitor is the medication. I’m a severe hemophilia B patient, and I have an anaphylactic allergy to factor IX products, so tolerization has never been an option for me. The half-life of my clotting factor is roughly two hours. That means, for my entire life, prophylactic treatment hasn’t been an option for me either. This is fine–it just means that I was forced to become accustomed to pain quite early, as were my parents. There was the physical pain for me and the emotional pain for them. And of course I have to cope with the nagging pain of the persistent, but unlikely, dream that someday I just might be able to become a professional skateboarder! Pain is probably the character most central to the story of a child with inhibitors. It’s typically the villain in the story that no one really wants to talk about, for fear of sounding too discouraging, but it’s one character that every inhibitor patient and their family knows all too well.

A mistake I made early in my life was consistently trying to wish the pain away. My mother and father would do the same, because the last thing they wanted to see was their child in pain. All the guidance we ever received about pain essentially boiled down to the old maxim “This too shall pass.” It’s a reasonable sentiment, but by the time I was nine, I began taking it with a grain of salt. Knowing that this ankle bleed will pass, but there’s a knee bleed in my near future. Knowing that knee bleed will pass, but my nearly-fused, arthritic knee will never heal itself. Knowing that even if it did, I would never get back those days I wasted wishing the pain away so I could run around with my friends.

I’m writing this at an absurdly late time of night because I have a bleed and can’t sleep. I’ll probably take a personal day from work tomorrow because I know I won’t be able to get any sleep tonight. It reminds me of the nights as a kid when I would lay awake in my bed, waiting for my mom to wake up for work so I could tell her I wasn’t going to be able to go to school. It reminds me of the days when I had to act to my friends like I was excited to have the “day off” school, when all I wanted in the world was to be there with them. This is the time when you just want whatever hardship you’re going through to be over, so you can go back to what you would like your normal life to be.

I think the most difficult part of being an active member in the community and working in the industry is having new parents, particularly parents of inhibitor patients, ask me what their future looks like, what their child’s future looks like. The truth is, I’m really not sure. With new options available in treatment, and the ones that are coming, added to all the other variables that could make their family’s life much different than mine, it’s always a difficult question to answer. The only honest answer I can give them is: I don’t know, though I suppose that isn’t the whole truth. I certainly know a lot of pain is coming their way. Maybe it’ll be less pain than I had. I certainly hope it will be less, but there will be pain nonetheless. The fact that others, including me, went through more pain, certainly won’t make their pain any easier. And to be honest, there isn’t a piece of advice, or any combination of wise words, to make it go away. But, speaking as one who has probably intellectualized their hurting more than the average person, I can say that pain isn’t a flatly negative experience.

One thing I know for sure is that whatever pain these families will feel, it will elicit a response within them. It will force them to do something about it. Maybe the response will be that the children will grow up and work for an organization that helps children like them, and their families. Maybe it will lead them to write an essay at that absurdly late time of night with a conviction and sense of purpose that they seldom feel in discussing any other topic. Or maybe it will just give them the capacity to tell someone in pain, “I know how you feel,” and share that person’s aching for a while. Whatever it is, I know that it will bring out of them a sense of purpose that I don’t think I could’ve found anywhere else, and because of that, it holds in it a unique value that should not be discounted or “wished away.” I don’t believe that anything I tell you will make the pain easier, but I want you to know that making things easier won’t necessarily make things better. So, be hopeful in the new treatment. Live like pain is never coming your way again. But when it does, please don’t be disappointed. Give it a response like it never expected.