5 Easy Steps. One Difficult Path:
My Scoliosis Journey by Karena Thek

Step One: Don’t get an early scoliosis diagnosis.

I love where I grew up: Small Town, USA. However, we didn’t have a lot of doctors, and the doctors we had were primarily there for triage, not for chronic conditions. They were there to keep us alive and did a darn good job of it. But an ongoing condition for a child with severe back pain? It didn’t compute, and I didn’t get a diagnosis and, therefore, any care for my spine.

Step Two: Dance your spine into oblivion

I didn’t have a scoliosis diagnosis, and I loved to dance. Any pain and dysfunction (not being able to do a certain move), I just chalked up to needing to try harder—not rest, not therapy, not help of any kind — just try harder. And I did. I tried very hard. I went on to dance professionally and didn’t retire until I could no longer tolerate the pain. It felt like quitting.

Step Three: Only seek help when things are super horrible

When I retired from dancing, the back pain did get better. And then, one fateful day, I sneezed. I immediately lost the use of my right leg – the fault of a sudden sequestered disc fragment. Off to surgery, I went, and by the way, it was this doctor who diagnosed me with scoliosis. After surgery, I got back most of the use of my leg. But my scoliosis and back pain got worse.

Step Four: Create your own solution

I couldn’t find help for my spine. The nearest Schroth therapist was 6 hours away. The education schools that taught professionals how to help those with scoliosis were all in Europe and wouldn’t let me take their courses because I am not a physical therapist. So, then, what? I started working on my own solution. I relied on the work of Katharina Schroth, Joseph Pilates, Dinah Bradley, David Butler, Robert Schleip, and the list goes on. It was a reinventing of the wheel because I was told I wasn’t qualified to have the instructions to make said wheel.

The good part about this is that I wasn’t biased to a certain set of rules and had Pilates equipment to help me make the changes of the spine I was seeking. So, I learned, experienced, and experimented with each correction, change, and nuance. Allowing for a fresh look at an accepted paradigm that, again, I didn’t know the rules to. It was like giving an unintentional makeover to a tried and true method.

Step Five: Totally hack people off

This has been the hardest “easy” step. I’m not a fan of stirring the pot, but I will fiercely protect my own, beginning with my family. I’ll also fiercely protect our Authorized Scolio-Pilates Practitioners and the scoli-clients we see.

It’s worth fighting for access to care. Only a small percentage of the Earth’s population lives with the resources to pay for a one-on-one scoliosis-specific exercise session. Part of our Scolio-Pilates mission will always be to offer free advice. Anyone with scoliosis has a right to this information. Is it better to see someone in person? Of course! But what percentage of the people living with scoliosis can afford that? Or afford the travel that goes with it? It’s only fair and good manners to share what we know. So we will continue to do that. Thank you, social media.

Then, our practitioners. It’s not just that I know each and everyone and believe in their skill; it’s their right as movement professionals to offer an exercise solution that I continue to fight for. Should exercise be saved for only one profession to teach? Or should someone who has actually studied exercise, knows how to move, and how to teach exercise also be allowed to teach? All of our practitioners are movement professionals. What does that mean? They are physical therapists, Pilates Instructors, yoga instructors, and dance teachers – they know how to move and the science behind their choices. That is the perfect combination. So many need help; we need more professionals, not less. Clients and patients don’t need an internal fight over who is allowed to teach exercise.

There you have it. My scoliosis journey, 5 Easy Steps. One Difficult Path. I get mad, I fume, I kick the crap out of my garden, walk until my feet are blistered, and write until I get the anger out, but what’s the option? Quit? Not today.