A Love Letter to the Scoliosis Community

I can’t believe I made it this far without you all. Now we’re here and we’re never going back.

How many ways are there to say “thank you”? Not to mention acts showing appreciation… Hugs and high-fives… Gifts galore… Do you like flowers and giftcards?

If I could give you all a massage therapy giftcard for being by my side and having each others’ backs (literally), I would.

The volume and rate of growing scoliosis support I have been fortunate enough to have a front-row seat to over the last three years has been nothing short of awe-inspiring. The internet went from barely anything in terms of supportive scoliosis information (hello dull medical journals), to an ever-growing landscape of Scoli’s speaking up about their sagas. And let’s be clear: they’re not speaking up to play the world’s smallest, saddest violin for their curvy spines; no sir! They’re speaking up for the sole reason to make others’ scoli journeys easier!

HOW HECKIN BEAUTIFUL IS THAT!?

I may not have ancient wisdom, as I sit here in my thirties. But I do have a VIP seat to this multi-generational frustration manifesting into determination to make it better. And for that, I thank you all.

Change does not come from one voice. It needs a chorus of voices shouting for adequate support, information, and research. When that chorus of voices grows before your eyes, making other families’ journeys easier, all while connecting with each other into the strongest of friendships, while understanding each others’ lives without having to explain yourselves… well that is even MORE BEAUTIFUL!

Thank you to each and every one of you that has bought my book, messaged me online through good days and bad, connected with another Scoli (whether through this page or elsewhere), talked about scoliosis with anybody who will listen, re-shared scoliosis information, or took some time to learn about your own scoliosis even if you weren’t ready to openly discuss it yet.

In the past - before there was any scoliosis community to speak of - my love letter would have been directed to a very different set of supports. While I still lean on them every now and then, they’re not the same as my Scoli human connections. But while we’re here, let’s give them their time in the THANK YOU spotlight as well:

Thank you to the back braces. Those myriad designs of plastic, metal, Velcro, and foam that try their darndest to course-correct curvy spines. It’s not your fault you’re so uncomfortable. To not have any option of non-invasive corrective options would, I think, be even worse. Here’s hoping this tech continues to evolve and improve for kids everywhere.

Thank you to the supportive parents. The OG community members. You helped us the best you could, with limited information and an abundance of questions.

Thank you to the friends, colleagues, and teachers that understood the basics of back pain and its impact on social and educational settings. Not pushing us, not guilting us, and being flexible on deadlines when flares occurred are what dreams are made of.

Thank you to pain meds. No, I am not a fan of you and I know you have a lot of side-effects and divided opinions. However, scoliosis can absolutely cause pain (no matter what you say, general internet. fight me.). Settling into a new brace causes pain. Spine surgery (can’t believe I have to spell this out…) absolutely causes pain. The mere thought of facing any of those chapters without the option of pain killers to assist boggles my mind. Pain inhibits sleep, lack of sleep enhances pain, cycle that over a few times… Here’s hoping this tech also continues to evolve to support us with fewer side-effects. We just want to move about our lives without being harassed by pain constantly, ok?

All in all, thank you for supporting people with curvy spines - whether you have one or not. Now is the time for scoliosis support. We’re here and we’re never going back!!

To support Scoliosis support globally, get your copy of Tangled in the Curves: Real Life with Idiopathic Scoliosis today! <3

‍Note: This blog is based on the author’s experience and opinion only, without any formal medical training. In no way should this blog replace professional medical advice.

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