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Turner Syndrome will Challenge You by Rebecca Niemy




I should consider myself lucky, and I am. I’m incredibly lucky. I made it to the other side, which is a miracle to begin with. So yes, I'm grateful, but that doesn’t mean there isn’t anger mixed in. Anger and frustration, with a side helping of, resentment, even though that’s not really polite to say. Nothing about Turner syndrome (TS) is simple or easy; it’s affects are both subtle and obvious, as well omnipresent. So yes, It’s complicated. I survived, but not without scar tissue.


TS is weird. There are days when I’m cool and none of it bothers me. I don’t see it, I just deal with it. There are also many days when I wish Turner syndrome wasn’t so damned greedy. For example, I can handle being incredibly short, I top out at 4’7’, or even not being able to have kids, because honestly, I’m not interested in being a mom.  But to take my hair through alopecia and bone strength through osteoporosis, it’s taken a lot, including many choices I wish I had been allowed to have that other women take for granted.


It’s the grieving what you don’t have that hurts, and the not being allowed to grieve without making others uncomfortable that makes things worse. Again, I was left with a healthy heart, so I should be grateful, but that makes things simple, which TS isn’t.


Turner syndrome is exhausting and draining. Adapting to a world that just simply isn’t built for you is a ridiculous task nobody asks for, especially knowing that the journey is never ending. At least with cancer there’s a possible light at the end.  A  rare genetic condition just is.


So you keep going, because the only other choice is nothing and I refuse to let giving in to the various indignities even be remotely entertained. TS has made me a fighter, whether I’ve wanted to be or not. I’ve had to fight for medical treatment, fight my own body, fight for understanding and patience, fight math homework, and parallel parking, because when you have TS spatial relations and math skills take a hit.


After my diagnosis at 7, I had to deal with getting growth hormone shots three times a week, which was fun for no one, especially my dad who gave them to me. My handwriting is awful, even by typical awful standards. However, I pride myself on never giving up, I’ve accomplished things that most people without TS would consider almost impossible. I know this comes from facing difficult things at an early age. I learned to adopt the attitude of “Well, ok, let’s do this.” because otherwise, I’d hide under the bed.


I’ve done a semester abroad in Scotland, which was terrifying at first but became one of the best experiences ever. I moved to New York City on my own and got my MA in Early Childhood Education and have been teaching preschool since 2012. I play softball and kickball even though my hand eye coordination is terrible. I've put myself through graduate school and I always take my turn at bat.


I had to grow up way faster than I should have and, and I deal with things that no young girl should ever have to, and that’s given me a perspective most people just won’t understand. So the big things don’t scare me as it’s the little things I’ve overcome that have made me stronger.


The NLD (nonverbal learning disability)I was diagnosed with at 23 has caused me to have to ask an almost annoying amount of questions just to be sure I understand exactly what is needed of me, and also to be super direct, to the point of being blunt. Clearly, I’ve never let Turner syndrome, or anyone else, dictate to me what I can and can’t do, or limit my options in any way.


That’s the message I would give to any girl diagnosed with TS, a parent of a girl diagnosed with TS, or really any chronic condition. The condition is going to challenge you; it will test you. The world will test you.  It will try to draw out the terms and conditions; don’t let it. You know your story, you know what you’re capable of, you are in charge of what you do and don’t do. If you want to play softball, play softball, even if your coordination is off. If you want to audition for that play, or take that class, do it. Don’t limit yourself, even if it’s an art class and you can’t draw for anything because of poor spatial relations.


When I stopped limiting myself, and taking ownership of my life and choices, and not surrendering to TS, I began to feel better and more confident. So, try it all and surround yourself with the people who are going to accept you in all your 2% butterfly glory.

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