I met an AMAZING young lady several months ago–and before you worry, I did ask permission to write this blog before I wrote it–and I’m grateful to have the opportunity to be able to share with all of you about this experience. I think it’s almost as valuable to all of you as it has been for me.
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In the few times we’ve met, I’ve been struck by a few things:
She and I have had many conversations and most of them aren’t even a little bit about EDS.
We’ve talked about Taylor Swift and nail polish and what it’s like to go from middle school to high school.
We’ve talked about watching our puppies grow up.
We’ve laughed about how the oldest sister is clearly the best sister.
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Why am I writing about her today, though? I didn’t realize until today that she isn’t just a kid with EDS who likes me because I like Taylor Swift and hanging out with her. She’s me. She’s me if I had the chance to go back and meet myself when I was 14. She’s me if my mom met a doctor who could have told me what was going on with my body. She’s me if I had a support group to attend and doctors to assist me and parents who knew how to fight for my accommodations at school.
You would never guess if you met me today that when I was 14, I was shy. I was quiet. I wasn’t at all sure who I was going to be. I didn’t know at all where I was going in life.
I remember being in middle school and the pain that went along with it. My body hurt every single day. It hurt a lot more that kids thought I was faking it. It hurt more when they told me in gym class that I was “lucky” I’d sprained another joint. It hurt in high school when they laughed about me needing to leave class early because the elevator was so far away from all the classrooms that I needed extra time to get there. They pushed their way past me in in my wheelchair during a fire drill to such a point I wondered if I would die in the event of an actual fire while all the mean girls escaped with their lip gloss still intact. I had a few really close friends I loved more than anything–and a lot of kids who would never understand no matter how many times I tried to explain.
I never knew an adult with my condition when I was 14. I didn’t even know what my condition was–but I certainly didn’t know how I was ever going to escape from those hallways with my pride still intact. I was afraid to be there. I wish I had known some. I wish I’d met someone. I wish they’d come up to me to talk to me about Taylor Swift and tell me the mean girls read their blog now (because they do).
This young woman is smart, funny, and beautiful–in order of importance. She is in the time of life when I was most struggling. She is in the time of life when I found I most needed words from others.
It’s funny, though, because I’m 27 now. I’m an adult. I’ve known what’s “going on with my body” for more than two years and the first time her mom told me that talking to me was enjoyable for her, I think it helped me more than it helped her. I think it was better for me that I had someone to walk with me at an EDS Awareness Walk who wanted to talk about Taylor Swift and puppies when my fiance couldn’t be there with me. Nothing I have accomplished in my life matters more to me than making a difference in the lives of young people who have EDS–and what I have found is that they actually make an even bigger difference in my life than I could ever make in theirs.
I hope she remembers for the rest of her days, even when EDS and its related conditions are dictating what she can do in a given day or even what she can physically do in a given lifetime, it doesn’t dictate for a second what she can do with her heart and her mind with every day on this earth. I hope she knows that sharing a smile and a laugh with her made my day and my life better. I hope she knows that she was the person I most wanted to see today–and that I was saving some Taylor videos on my phone just for her. I hope she finds her voice the same way I did but that I will be here to be a sounding board every time she needs one while she’s still growing up.
Someone said today, “middle school is hard enough without all of this.” It was the truest and most painful thing I had heard in a long time. I would never wish EDS on every person who knows me, but I will use all of the words I can write to help them understand. It’s not as effective on 10-18 year olds, but that’s why we have to find our younger selves and love them the way we needed someone to love on us. We need to support them the way we needed someone to support us. We need to let them speak and write and LISTEN to them as much as they need.
Then, when you hear later that the time you spent made a difference in their lives, I promise you, it will help you even more than it helped them. Finding your young self is rewarding. Showing your young self shared interests and friendship is some of the best medicine there is.
Be your own friend. Be it today.
