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Sunday, December 14, 2014

Coming Out of the MS Closet

One of the major issues we face as MS patients is the inevitable need for assistive devices such as canes, braces, walkers, wheelchairs and scooters.

Before my diagnosis, I never even noticed these objects as I made my way through a public place, other than to offer a sympathetic glance, or perhaps hold a door for someone who was struggling. After all, I am a career healthcare professional, and we are used to seeing these things on a daily basis.

After diagnosis, these devices and what they symbolize has taken on an entirely different place in the forefront of my mind. In the last year, I went from needing no devices to using a brace and occasionally, a cane. My brace looks like a robotic leg, and my children have started calling it "mom's leg" because it sits upright in a shoe in the hallway. This is an amazing, light device that is easy to use, and invisible in long pants. This step was an incredibly difficult one for me, although the devices themselves were very helpful. The physical effect was achieved, helping me to feel stronger and more balanced as I walked with my left foot drop. I went from hobbling around my house to going out in public again and ambulating for a period of time. This was a huge deal!

My foot drop brace, called an AFO: Made of carbon fiber, extremely light, and invisible in pants
Why, then, did I have such conflicting feelings about it?

It feels like coming out of the closet. Most of us are able to hide our diagnosis, at least for a while. That moment when you realize you can no longer cover up this illness is a tough one, and I was experiencing it fully. The stares are incredible, aren't they? The looks people gave me. I was used to getting "disapproving glances" for many years from strangers when I was out with my children, who inevitably act out in public. Those judgmental stares, where people seem to be thinking "What kind of parent are you?" These new stares were different. Now I was the recipient of the sympathetic looks from strangers. Now I was getting doors held open for me as I made my way through the city. Even my 97 year old grandfather, a lifelong athlete, adamantly refuses to use a cane. "No way," he says. How was I supposed to feel okay about it??

My cane is covered with multi-colored butterflies, mostly because I thought it was humorous. I didn't want the plain, tired looking black medical cane. I went with something that was more lighthearted. I have even had compliments on my cane. All these years trying to get my make up on correctly, hair done just right, clothes looking nice, and I am getting compliments on my cane??

I vividly recall passing by a bathroom mirror one day, on one of the first days I used my cane in public. I felt so ancient physically. I passed by elderly patients in the hospital, we exchanged knowing smiles as we scooted past each other like snails. I made my way into the restroom, and looked at my reflection in the mirror. I recall being absolutely shocked that I looked so young. I felt at least 90 as I walked, and this reflection did not match up. It was a mixture of relief and disbelief, and I realized that the way I felt physically did not jive with my outward appearance. I was still only 40, regardless of this cane!

The truth is, assistive devices do not define you as an individual. They don't tell the world who you really are, they only speak to your physical state at that moment. The more important issue is that they can enable you to get around the world like a semi-"normal" person, rather than remaining housebound 24 hours per day. I would much rather get out and enjoy life rather than staying home and feeling embarrassed. After all, who cares what people think? This is your life, not theirs. I have a new mantra that passes through my mind if I feel eyes staring at me in public: "Judge away..."

No one knows anything about your struggle, your challenges, and your battle. These things are yours, this life is yours, and no one has any right to judge. Making that leap from "invisible" MS to publicly visible disease is a tough one, and you can anticipate very mixed feelings about it. I would suggest talking with other patients who have gone through this exact experience, and getting some suggestions. These devices can be miraculous for patients who are very limited otherwise. Try not to let your vanity keep you from enjoying your life!

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