“Based on the results of your MRI, I’m willing to fuse L-4 / L-5,” my neuro-surgeon explained. “But I can’t make any promises as to the outcome. The surgery may help, but I doubt it will solve all of your leg issues.”
“I know,” I sighed. “I live in an odd world. My neurologist’s think my leg issues are back related. But you’re convinced they’re somewhat neurological in nature. Throw in all the unknowns about mitochondrial disease and I peer through muddy waters while making these decisions.”
The tall, stocky surgeon looked back with rare empathy. And his understanding lingers still.
Only a week before, I sat in a disability office, where I learned the government had asked their doctor to screen me for bipolar disorder. While I don’t want to minimize those who live with the harsh reality of severe mood swings, I was dumbfounded that someone who’d perused my medical records chose to lean that direction.
I’m a lot of things—and even prone to pick my cuticles till they bleed—but I’m not bipolar.
Almost a decade ago I received my first disability rejection letter, which stated, “You don’t even need to use a cane.”
Not only were my legs weak and unreliable, doctors didn’t believe me. The government claimed I was exaggerating my issues and using a cane for fun. Humiliated, it took years to come to grips with living in a body that defies medical logic.
Even now, I’m waiting for a call from my hip surgeon’s office because in the end, the neurosurgeon and I agreed that fixing the tear in my gluteus medius tendon takes precedence over the back fusion. But since that type of tendon tear is mostly found during hip replacements, my hip surgeon is somewhat hesitant to fix it.
It’s just not normal—like a lot of other things in my body.
So, since the words ‘mitochondrial disease’ still stir up debate in the medical community, I’m going to keep writing and sharing my story, hoping to bring awareness to what many go through.
It’s the best weapon we have—our very own unique story. And we need to use it.
So, as mitochondrial disease awareness approaches, will you consider a few things:
- A sweet friend, Riley Hogan, used my first husband’s art work to design a new t-shirt in hopes of broadcasting the message and raising a few dollars. Take a look. I’d love to put one in the mail for you. (Click image for link)
- Write your story. Share it on Facebook. Email it to friends, doctors, family. Contact a local news agency. Determine to share it with five people. Ten. Maybe even twenty. Start small or go big. Just step out.
- Reach out to a local business and ask them to help fund much needed research by donating to the Hope Flies event. While talking about money makes all of us squirm, I’m determined to step out of my comfort zone and make a few calls. I’ll let you know how it goes.
Story by story our voice will be heard. So, use yours!
About the Author: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects of mitochondrialdisease. Learn more about Susan, her latest book and many songs at: www.susanschreerdavis.com