How I First Tried to Share My Story

In college, I wanted to start a website to help others with scoliosis (who needed braces and/or surgery), to learn from my experiences. I imagined a kind of group therapy and advice coffee klatch for those with scoliosis.

How I First Tried to Share My Story

I didn’t have expert advice of course (never been on the med school route, although I know a lot about a lot of diseases because of an almost obsessive need to read to relax, and a fear of illnesses and a love of WebMD—though I’ve been working hard to avoid WebMD and similar sites), but I thought if I could get others who had gone through it on there we could give personal advice and solidarity.

I even got Judy Blume to agree to put a link to it on her website. For anyone who thinks this is random, look up fiction for children and teens on scoliosis. It’s a pretty short list and when I was ten, it was just Judy Blume.

She wrote a book about a model who had to wear a brace to school. A teenager that looked like me! Except for the model thing, of course. I was not even close to being a model as a teen. But what does every teen (and person, really) want?

To see someone like them in the world—which is why anyone who doesn’t identify with the prevailing gorgeous, white, healthy, and rich people on TV, keeps pushing for more representation. And why people keep rolling their eyes when they get one African American or Asian American or disabled character and people think that is enough.

Someone in a wheelchair is not someone in a back brace is not someone with lupus is not someone who is blind. It’s like saying all Asian and Asian Americans (several billion people) can be represented by Mindy Kaling or Aziz Ansari. Nope. Keep trying.

Sadly, my website idea never went anywhere. I got distracted by lack of sleep, assignments, anxiety, migraines, roomie late night bonding, applying for internships, dating, figuring out what to do with my life, and other typical college stuff.

Now that I’m older, wiser, and humbler, I’m doing this blog instead. I don’t have answers. I don’t have medical advice. I have a weird mix of physical and mental illnesses that are chronic and that in their own special way have defined my life.

And maybe others who also have physical or mental illnesses or know people who do—people who also write or, like I did for so long, read about others’ experiences, will get something out of it. Maybe they too want to share their experiences but don’t know how, have time, or again, like me, are anxious or unable to start a blog yet.

I still get anxious when it comes time for me to post based on my schedule. I wonder how many others feel that? It can look really easy to have a confident writing persona online after editing, proofreading, polishing, and adding a bright graphic, but we don’t know what the writing process looks like.

For me, it’s a nerve wracking experience to prepare to put these thoughts and experiences online, but I don’t want my anxiety to win, so I keep hitting publish.

How I First Tried to Share My Story

Photo by Aidan Hancock on Unsplash

10 thoughts on “How I First Tried to Share My Story

  1. This was an incredible read for me. And it’s so true. People really think one thing out there representing a generic group of people is enough. Sharing your story is and will inspire so many people which is why it’s wonderfuk you’re doing it. Great post!

    Liked by 1 person

  2. It’s awesome that you’re sharing your story, and I admire your determination to push past the anxiety and continue to publish great posts like this!

    Liked by 1 person

  3. 1. Yes — feeling validated by someone else’s shared minority experience is priceless, even if what’s shared is the experience of being tokenized.
    2. I remain so moved by your transparency. You’re commitment to being wholly who you are is a gift of liberation to everyone else.

    Liked by 1 person

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