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An Open Letter to My Congenital Heart Disease

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Dear “Topher,” my Tetralogy of Fallot,

I hate you! What have I ever done to you? I mean, seriously!? For seemingly no apparent reason, you have put me through some of the worst times in my life (both physically and mentally), and you caused my family and friends to worry about my very survival in the face of major surgery — not once, but twice. And knowing you, you may very well have plans to do so again in the future. But, of course, that’s just an unknown at this point, and naturally you won’t give me much of a head’s up if I do have to go through that experience again.

I have done absolutely nothing to you, yet you’ve left scars on my body that remind me of those perilous moments virtually every time I see them. I really never wanted to be in the one percent. I’m already left-handed and gay. Why couldn’t I have been in the majority here — you know, part that wonderful group of people not born with a wonky heart and subjected to a lifetime of necessary specialized care? This sucks! Thanks for nothing!

But if I’m being honest with myself, I also love you and appreciate you more than I ever thought possible. You made me part of a community that is filled with some of the strongest, most dedicated, and most compassionate people I know. You introduced me to wonderful friends, peers, and allies across the country— people I never would have met if I was “normal.” You’ve given me the opportunity to share my story on Capitol Hill and in front of audiences across the country. You made it possible for me to no longer fear my own mortality, but rather to embrace the limited time I have on this planet to live the best and fullest life possible. You gave me the strength to quit a job that wasn’t right for me, to take a leap of faith in myself, and to walk 500 miles across northern Spain carrying nothing but a backpack and a quest for new adventures.

Twenty years ago, as an awkward teenager, I used you as an “out” of playing football, a sport I never really cared for and certainly had no interest in playing anyway. But kids can be cruel, and there are a whole host of adjectives that typically await a young boy who doesn’t want to play football. Yet no one ever questioned me when I said I couldn’t play because of a heart condition. (So thanks for that! Congenital heart disease for the win!)

In different ways, maybe we just use each other in this relationship. You use me (and many of my friends) as a test case for new medical treatments and technologies. (Speaking of which, the next time I need a new pulmonary valve, maybe we can try that catheter thing instead of the open heart approach, eh?) And I suppose I use you too occasionally as an excuse to get out of doing something I don’t want to do. But much more often as an excuse, a reason, or a kick-in-the-pants motivator to do what it is I really want to do and deserve to do.

So let’s make a deal, shall we? I’m certainly under no false illusions that our future together is going to be all flowers and trees. I suspect there will be some more IVs and Holter monitors in there. But, for better or worse, we’re stuck with each other. So how about we do what we can to focus on the better a bit more? How about we look out for each other so that we can each become the best versions of ourselves? If necessary, I’ll let you use me to advance the medical field’s knowledge of congenital heart disease. But you have to agree to let me use you to keep living the most amazing and adventure-filled life that I possibly can.

So do we have a deal?

Living and loving you with all my heart,

Ken of Hearts

Follow this journey on Ken of Hearts.

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Thinkstock Image By: Jacob Ammentorp Lund

Originally published: July 28, 2017
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