Breaking Backs & Building Boundaries
They told me I just needed to stretch more, but I was a contortionist. For the last ten years, I’ve had chronic back pain. For six of those, I’ve been trying to convince doctors that my chronic back pain is real.
I expected to learn about my body in this quest for healing, but I had no idea it would teach me so much about boundaries. I hope my story helps you with yours.
“Pain= You’re not strong enough” has become my baseline of existence thanks to a year of Chinese Circus School (picture) followed by a catalog of doctors who all said the same things. “Everything looks fine… let’s get you into Physical therapy to help stabilize and strengthen”. Over 5 doctors and 6 physical therapists, the message is clear- if something feels off, it’s because I’m not strong enough. (For the record my last PT was an angel and was not part of the problem. Naomi, if you’re reading this hello and thanks!)
I did a show like any other at the end of last year's tour. The audience loved me, I told jokes, did some contortion and hula hooping with high energy, and the show was perfect- except for that moment when I felt a loss of sensation in my left leg during my finale.
Mind you my finale is standing on top a 10' tall 'coconut tree' while I balance on one leg and spin 5 hula hoops at varying speeds (picture from Edinburgh Fringe, Scotland).
For a moment, I lost sensation in my leg. Just a moment, but still. Even with my pineapple helmet on (not pictured), that's not funny.
I climbed down from my coconut tree confused and downright scared. What just happened? Do I still need to be stronger? Doctors said I’m fine, but this isn’t right.
Despite my years of acrobatic training and performing stunts, I’ve always questioned my body, my strength, and my sanity because of my pain, and the professionals and coaches who told me it’s not that bad or to make it go away I just need to be stronger.
Year after year. Ache after ache, I’ve listened to their voices instead of my own to find answers.
Today that changed.
In the last twelve hours, I’ve gotten an MRI, X-ray, and spinal injections. While I sat in the radiology waiting room (which looked like a geriatric waiting room), I couldn’t help but smile cheek to cheek. Needless to say, I was the only one happy to be getting needles in my spine. (This is not my spine pictured, but it's the same break I had in 2012)
Trying to navigate the healthcare system when your doctors don’t care about or believe you is like navigating the Bermuda triangle with a broken compass and a wood pallet as your ship. If you don’t know what's wrong (and how could you when WebMD says you may die of 7 causes by tomorrow) and your doctor doesn't care, then your next best hope is finding a Shaman and Medicine Person.
At least that’s my story. For the record, the Shaman and Medicine Person were better listeners than my last Orthopedic Surgeon. OK, I didn’t meet a Shaman or Medicine person, but it seemed more practical than continuing to be overlooked by the medical system. I'm not even joking.
At some point I realized, I can’t change the system, so I have to change myself.
More yoga. More meditation. More experimenting with exercises, movement patterns, and stress management. Nothing helped. Years passed. Pain compounded.
So, I finally went to see the Shaman and Medicine Person, and let me tell you they were- fine, OK I didn’t do that. But I did do something that felt just as unconventional… I started fighting for myself. Relentlessly. I started telling doctors they were wrong.
Hold on, by no means am I telling you to do this! Listen to your doctors! They’re way smarter than you and the two thumbs you used to scroll WebMD for five minutes!
This is a special circumstance, and it started with Dr.Doesn’tListen.
“Didn’t I see you a few years ago?”. Yes, Dr.Doesn’tListen, you did and you told me to go to physical therapy for the third time. I’ve now gone another two times since then and my pain is still worse. “Well, your X-rays look fine.” That’s because my broken back was TEN years ago.
Upon hearing this Dr. Doesn’tListen expressed what I think was meant to be sympathy and came out as “I just don’t see any problems”. I trust medical professionals, but I also trust that they’re often overworked, and not in a position to get you the help you need.
I made a complaint (gasp!) and demanded I see a different doctor. One I had researched on my own, not another one in the catalog of referrals that go nowhere. And finally, I found Dr.ActuallyBelievesMe.
Getting needles pushed into my low back doesn’t sound sexy but I couldn't have been happier to be twitching and groaning as my SI joint was injected with magical pain removal sauce this morning (pictured). I don’t know if the magical pain removal sauce will work, but I do know that for the first time in a long time, I have a healthcare professional who actually cares and believes me.
In my back pain journey and life, I’m reminded that the only way forward is to advocate for myself relentlessly.
This isn’t about telling people they suck or don’t know what they’re talking about. It’s about remembering that if you don’t advocate for yourself no one else will. If you don’t make your feelings, thoughts, pain, boundaries, etc. clear, how can you expect someone to understand? How can you ever get help?
Communicating our needs is surprisingly scary. But, if you’re always looking to outer authorities instead of your own voice, what authority are you taking away from yourself? What opportunity are you taking away from the people who are trying to take care of you?
What’s your backache in life right now? Where do you need to make your needs and experiences clearer? How can you communicate better to help others help you?
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