I’m having a beef with Marfan Syndrome. Lately the reality of my disorder has been hitting me harder, and I’ve been struggling with it. I had originally written a very dark post but before publishing decided to instead save it and if I was still feeling that way then I would post it. For now, I’m keeping it unpublished, and am instead writing this:
First thing’s first, I do not hate you. Sometimes I’d like to, for all of the people that you’ve taken from this world too soon, for all of the pain and heartache you so often cause. But, you are what has made me who I am today, and showed me strength that I never would’ve thought I had. So, I don’t hate you, but I am angry with you. I’m angry with you for trying so hard to make me hate my own body and for all of the things that you’ve taken away from me, all of the things that I’ve missed out on because of you. You were not supposed to be a part of my life. You were never part of the plan.
I’d like to ask you why you chose me, but in all honesty, that’s not as important to me anymore. I wouldn’t wish you on someone else instead. But I do wish you didn’t make me feel like a ticking time bomb. I wish that I never had to think about things like aortic dissection and emergency heart surgery, that I didn’t feel the need to have my affairs in order, “just in case”. I wish I didn’t have to wonder if you’d cause any future child of mine suffering, or if I’d lose my own life in the attempt to have one.
I wish you hadn’t taken my sports and many of my friends, and replaced them with medications and doctor appointments. You’re constantly reminding me that no part of my body is safe from your consequences and that it’s only a matter of time before something else goes wrong. You hurt me, day in and day out, standing or sitting, year after year, from head to toe. Because of you I talk more often to doctors than I do to people my own age.
I had dreams before I knew you. Now, I’m afraid to get excited for the future because I know, eventually, you’ll get in the way of it. You always do. As soon as I let myself want something, you give me a reason why I can’t have it. You’ve given me a body that is always telling me “no”. No, you can’t play basketball anymore, no, you can’t have a job, no, you can’t get your heart rate up, no, you can’t lift that. No.
These are all of the reasons that I’m angry with you, these are all of the reasons that you scare me. And honestly, it feels good to get them off of my chest. But, you haven’t been all bad. You’ve given me a chance to have this blog and to talk to and meet people that I never would’ve otherwise known. You’ve taught me a lot about the important things in life, like telling those you love that you love them, as often as possible. You’ve showed me the ignorance and cruel judgement of some, but you’ve also showed me the uncompromising kindness of others. You’ve taught me to be compassionate, and not judge others by their looks, because you never know what they’ve struggled through.
I wish that I could know a future without you in it. I wish that you hadn’t changed everything so much. But most of all, I wish that my body belonged to me, not you.
– Katie Robertson
“A tragedy need not have blood and death; it’s enough that it all be filled with that majestic sadness that is the pleasure of tragedy.” – Jean Racine