It means more than you could ever imagine to myself, my brother and to the rest of my family that you have come here to collaborate with great minds in order to work towards a cure for DBA.
As some of you may already know, I was diagnosed with DBA when I was seven weeks old, and I have never known a life outside of DBA. In many ways, this is a ray of light in what many believe should be a time of darkness. Being medicated with iron chelators and going in for transfusions every three weeks was set as the standard of living for me at a young age, so in a way, it’s just a part of my life that I never really thought about when I was young.
But as I grew up, I began seeing the way other people were able to spend sunny Fridays at home or outside, not in an eerily clean hospital with a needle in their chest. I saw how other kids could run as far and as fast as they wanted, and I could only keep a steady jog for 15 minutes before I felt like I would pass out. The older I got, the more I got to thinking, ”Well…this kinda sucks.”
When I reached a certain age, I realized and accepted what I never wanted to: my standard of living is not normal. As I finished up high school and entered into college, this thought stood out to me consistently. Every day that I’d wake up to a splitting headache because I was due for a transfusion, I thought about it. Every time I reached the top of a staircase feeling less like a man walking to class and more like Frodo walking up the steps of Mount Doom, I thought about it. It was practically unshakable.
And then, as I got older, I realized something else; something that was far more important than an understanding of my impairment. I realized that I shouldn’t care about what I could and couldn’t do. DBA was a part of my life and it was always going to affect me in one way or another. In that moment I realized that when it does try to stop me, I have two choices. My first choice is to accept that my illness is no fun, and has no benefits whatsoever and to feel sorry for myself. My second choice is to adapt. DBA is a part of me, but it does not define me. I’m not Christopher Vroman, the DBA patient. I’m Christopher Vroman, the guy who can write short stories and play ultimate frisbee with my friends if I want to, even if it makes me feel like a mostly empty packet of Capri-Sun. I want a future: a career, a wife, kids. I want to become a better writer in the professional world, and I want to entertain people with stories. I’m not going to let DBA keep me from that future, and in the context of my fight with my illness, this realization was my moment of victory. Of course, I still selfishly pray that I’ll get to see a cure in my lifetime, but until that point, I’m going to live my life the way I want and the way God has called me to.
Of course, I can stand up on my soapbox all day and declare that DBA is an issue of mind over matter, but the reality is that when it comes to struggling with this illness, I’ve had it easy. Some of you may remember that I wrote you a letter seven years ago, asking you to find a cure for DBA. I still desperately want to see you do that, but for entirely different reasons. You’re not here to find a cure for me; you’re here to find a cure for people like my younger brother; DBA patients who’ve been thrown every curveball that life can pitch. I will not be kept down by DBA. I’ve had that moment of clarity. You’re here so that people like my brother can have theirs, and for that, I thank you all for coming to this event.