Brace yourself…

Roosevelt is said to have had GBS, NOT polio as originally presumed. Source: 'NY - Hyde Park: Franklin D. Roosevelt Presidential Library - Leg braces" posted by Wally Gobetz is licensed under CC BY-NC-ND 2.0

Roosevelt is said to have had GBS, NOT polio as originally presumed. Source: “NY – Hyde Park: Franklin D. Roosevelt Presidential Library – Leg braces” posted by Wally Gobetz is licensed under CC BY-NC-ND 2.0

AFOs Part 2: She has no legs!

In AFOs Part 1 I brought you up to speed on the when, why and how I got my first pair of AFOs. I told you about my struggles wearing them. I rationalized why I didn’t wear them and I set up the situation I now find myself in.

When boyfriend and I broke up in January of this year, I was tired, unhappy, and 20Ibs heavier than when we started dating. I had sunk all of my energy into the relationship and was feeling depleted. I was falling into a depression; I hadn’t yet recognized.

In April, I moved into my new place and took the first two months month to wallow. I slept, I laid around, I watched TV, I fed my Pinterest addiction, I rearranged my closets, I ate takeout and I avoided most social situations. I showered, walked the pup, and I made it into work, but most of the time I was just tired, often I was sad.

I was sad for all of the obvious reasons – I was single AGAIN at 33, I had lost a perfectly lovely single girl space in my previous apartment. I had let some friendships fizzle and more recently some had imploded. I wasn’t feeling fulfilled in my job, I felt fat and unhealthy…and fat. I wasn’t sure how to get moving, how to lose the weight, how to feel healthier through exercise…AND I would never run the Ottawa marathon…

I’ve always struggled to get enough aerobic activity for weight loss, and cardiovascular health. My balance and gait mean I move deliberately, and my loss of strength and slow healing mean that I have to be very careful not to tax my muscles too much.

All the while, my AFOs sat comfortably in one of my rearranged closets.

"Amy Purdy - Pop Tech 2012 - Camden Maine USA" posted by PopTech licensed by CC BY-SA 2.0

Amy Purdy kicked a** on DWTS! Source:”Amy Purdy – Pop Tech 2012 – Camden Maine USA” posted by PopTech licensed by CC BY-SA 2.0

One random evening, there was nothing on television. Like nothing, nothing. So I turned on Dancing with the Stars (DWTS). You know, that American dance competition where contestant couples consist of a celebrity paired with a professional dancer? In the spring of 2014, one of the contestants was Amy Purdy, a Paralympic Bronze Medalist in snowboarding. Purdy lost both of her legs at the age of 19, to bacterial meningitis. I watched as she flew around the floor on legs especially fabricated for her to dance. They were sleek. She was graceful. She was beautiful, and looked pretty much the furthest from disabled that I could imagine.

And then it hit me!! What if I had my legs amputated below the knees? Foot drop, gone. Muscle weakness in my lower legs – buh bye! You can’t roll ankles you don’t have, right?! You can’t trip over feet that aren’t there. How could I ever sell this to my doctor? What was the recovery time?   I was genuinely excited! I knew that there was a greater disease process at play in my body, but I also knew that the majority of my weakness was in my furthest extremities – so my hands, and my legs below the knee.

And then it happened.   (Sound of screeching tires) I had an out-of-body experience. I was watching myself sitting in my living room, SERIOUSLY consider having MY LEGS AMPUTATED. Now, I’ll give you a moment to let that sink in – the absurdity of that scenario.

It took a couple of seconds, but I finally realized how crazy I sounded. My next though was there has GOT to be a better solution than the AFOs I have now. If I am seriously considering CUTTING OFF my legs, there is a problem. No rational human being, has these thoughts, right? How can Purdy compete in a dance competition (and come second) but I can’t walk my dog in an energetic, safe, comfortable and somewhat fashionable way?   This can’t be. This is ridiculous. It’s 2014! I was incensed!!

I should add a caveat here: I had seen orthotists in the decade since my diagnosis. Just to pick their brains, and to see if the technology around AFOs had advanced in any way. Every time, I was assured that it had not. My ugly, uncomfortable, plastic AFOs were the best there was I was told, and nobody seemed particularly interested in finding something better if it did exist.

In those moments after my DWTS epiphany I decided that status quo was no longer acceptable. A double amputee can compete, and almost win a dance competition. I can find something better, somewhere. And so, I called my mom (obviously) and told her about my new resolve. Knowing the drill, I emailed my neuro to get a prescription for new AFOs, and just like that so began the search, and hopefully my resolve to find a solution that works for me.

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