Dear Loeys-Dietz Syndrome 4,
You came to me embedded in my DNA. You didn’t get diagnosed right away, you lurked in the background; silently chipping away at my life.
You didn’t want to be recognized too easily. You wanted blood tests, ultrasounds, X-rays, MRIs, orthopedic surgeries, and me sitting up all night questioning what is wrong with me. You wanted 16 years of my life before you’d give up your name.
I’ve got your name now, but as your last one finger salute, you don’t have a cure. You and me LDS, we’re stuck together for the foreseeable future. There’s one thing that you overlooked when you decided to slip into my DNA – you failed to realize that you’d chosen a Warrior!
Do you scare me? Hell yes you do, not that I’d ever admit that to you. You scare me every time I’m reminded that you’re trying really hard to destroy my body. You scare me when I am reminded that you are degenerative. You scare me when my ankles, hips or knees subluxate when I’m walking. You scare me when my wrists, elbows or shoulders subluxate when I am trying to do ordinary activities. You scare me every time my head feels funny – wondering if a seizure or worse, another stroke is on the horizon. You scare me when you make me feel utterly useless. You scare me when you make me question, even for a single moment, if giving up would just be easier. You scare me in a dozen different ways, every single day. You sometimes make me fear my future.
Even though you scare me, I need you to know that I refuse to let you be my master. I’m going to live my life on my terms! You can make my life difficult, and you can make me feel defeated when I fight the same battle day in and day out, seemingly with no progress. When you kick my feet out from under me, you can tempt me to just stay on my knees – but you can’t stop me from getting up again, even if you sometimes make wanting to get up really freaking hard!
You think that you can control me – and oftentimes you do. There are many times that you get to dictate what happens with my day. You can derail the best laid plans. You can make sure that I’m almost bedridden for days, and sometimes weeks if you’re feeling particularly snarky. You can make sure that there is not a day in my life when I’m not in pain. You make sure to remind me that you’re there when I walk to the bathroom and my ankles subluxate. What you don’t realize, is that you can only control my body, and I am so much more than just a body.
There are loads of things that you can’t take from me. You can’t take away the pride that I have in my para-driving. You can’t take away the mile wide grin that I have because I just enrolled in college. You can’t take away my love for my girlfriend. You can’t take away the way that I can talk to my Mom about anything, or the pleasure I get from seeing my animals. You can’t take away the bond that I have with my driving coach. These are intangible things, and no matter how much you try to take from me, these are things that you don’t get to have.
I’d like to claim that I’m not scared of you anymore, but we both know that that’s a lie. You’ll continue to scare me, every time you show a new symptom or cause a medical crisis; like that time that you trapped me inside my own body for weeks after I had a stroke during brain surgery. Only one of us had fun that time, and it definitely wasn’t me. What I can tell you is that I look at this as an ever escalating battle. For everything that you throw at me, I struggle to adapt and overcome. I liken myself to the quote from “Lilo and Stitch,” but paraphrased – my body may be weak and broken, but I’m still good.
Loeys-Dietz Syndrome 4, you will continue to try to take my body, but you can’t have my spirit – that is mine, and mine alone.
Enjoy ravaging my body while you can, because one day, we’ll have better ways to manage you, and eventually a cure. It might not be today, or tomorrow, but someday the people whose lives you’ve tried to take over will have the last laugh, and everyone knows that the last laugh counts the most.
Until then, you may win some battles, but I’m bound and determined that you won’t win the war.
There is one thing that I can genuinely thank you for. Thank you for galvanizing me in the fires of pain. You’ve unwittingly gave me the strength of a Warrior!