Brace yourself…

“We do not see things as they are, we see things as we are”                                                                                 -Anais Nin

In my last post, I talked about my renewed desire to start trying new things, or at least to start enjoying things again – to get moving. So for the next few posts I want to talk about my experience with bracing.

I’ve procrastinated (shocker!) these posts because I wasn’t sure how to approach them. I’m still not, but best to start. My intention for these posts is to share my story for others who might be feeling the same feels, and fighting the same fights.

AFOs Part 1: I love hate you.

When I was diagnosed in 2005, it was not good. During the tumult of moving back home to Sudbury, a break-up, the rapid decline of my health and an increasingly desperate search for answers to what was happening to my body, I was referred to an Orthotist, a Physical Therapist, and an Occupational Therapist at the Sudbury hospital. I’ll be honest – at the time, I don’t think I really even understood why an Orthotist.  My diagnosis was unclear.  Charcot-Marie-Tooth (CMT)?  CIDP?  I was stumbling (literally) around in a daze hoping someone would figure out what was wrong with me, and just fix it. I held out hope that I wouldn’t need assistive devices of any kind. The doctors would figure it out and they would give me a pill, or a shot, or a lobotomy, and I would get better. All. Better.

In that stupor, I showed up to the Orthotist and in relatively short order, he fitted me for and fabricated a custom pair of ankle foot orthotics (AFO).

Check these babies out!

Check these babies out!

These “beauties” are supposed to compensate for the muscle weakness and subsequent foot drop that makes walking difficult and sometimes treacherous for me.  They are made to stabilize my ankles so I don’t roll them, and alleviate some of the fatigue of trying to stay upright on legs that can’t keep me vertical without an extraordinary amount of concentration and energy.

They do in fact, do all of those things. BUT, they are also warm, tight, awkward and hideous. They don’t fit in normal shoes or sandals. Any footwear that can accommodate them needs to be at least a size larger, and have a wide width to accommodate their bulkiness.

Hey, just for fun(!) Google: “shoes for AFOs for adults” I dare you.

When presented with these hideous “modern” medical marvels I did what any rational, fashion conscious, mature woman in her 20s would do.  I didn’t wear them.  I reasoned that while I would have to give up high heels, flip flops, and slip on sandals, why should I have to submit to the indignity of AFOs unless ABSOLUTELY necessary.  I would walk slower, be more careful, and deal with the fatigue associated with trecking around without them I decided.

Periodically, I would take them out, dust them off and wear them for a walk in the woods, to the dog park, out to get coffee on the weekend, whatever, just to see if they really did help THAT much with my gait and stability.

Here’s the thing – they do. But they are still warm, tight, awkward, and hideous. So (until recently) once I did my little test (usually every spring) I would (obviously) put them away for another while. I just couldn’t mentally or physically acclimatize myself to wearing them.

In the decade that I’ve had them and pretty much not worn them, I have fallen (not often) but to no catastrophic end and I can’t say that I (completely) regret the decision. Out of sight, out of mind. And for a long time I was dealing with all I could handle most of the time I suppose, without the added visual reminder of my losses.


One response to “Brace yourself…

  • Judy

    Jessie, you write with a depth of feeling and wisdom that belies your age; altho your life experience has prepared you well (both fortunate and unfortunate .. if ya know what I mean). I love the clarity and honesty in your writing and hope that, once you are comfortable releasing your gift to a broader audience, others with CIDP will benefit with reading in ways that will lighten their load.

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