The CMT Calculus of Attending a Wedding

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by Young Lee |

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I arrived at the venue more than an hour before my buddy’s wedding rehearsal was supposed to start. Even though the rehearsal itself was a kind of preparation, and my role in the ceremony wasn’t very big, I wanted to check out and prepare for a few things.

Some of the things I wanted to look into were mundane, simple, and to be expected: Where were all the bathrooms? Where should we store the alcohol? Where should we tell the venue managers to place the check-in table? Would we have coat racks for our suits, or should we keep them in our cars? Because everything was outdoors, in what direction would the sun be shining?

But I felt compelled to check out other things purely for my consideration. I needed to assuage my fears and nerves, particularly about managing my Charcot-Marie-Tooth (CMT) symptoms while participating in the wedding ceremony.

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When I followed my friend and his new bride down the aisle after they said their “I dos,” how stable would the aisle be? Was the ground paved, grassy, or gravel? On what terrain would the wedding photographers have us pose? Should I bring my walking stick? How would I feel going up and down the stairs with and without my ankle-foot orthoses?

I think many CMTers can relate to these concerns. It’s all part of the mental “CMT calculus” that constantly runs through our minds amid everyday life.

It’s things like this that cause CMT to be draining for many of us. Managing CMT isn’t just about pushing through pain and trying to keep a stiff upper lip when symptoms get the better of us. It also involves planning, preparation, decision-making, and the related stresses.

Sometimes, it feels like it takes work and effort just to be disabled.

Now, I’m more than happy to put in that work, especially for my friend and an event like this. It was a privilege to be there for him on his wedding day and see him tie the knot.

And it was truly a beautiful ceremony befitting a beautiful couple.

Still, I won’t miss trying to climb the steps in that venue with ankle-foot orthoses, or the aches I felt in my feet the morning after dancing the night away in uncomfortable dress shoes.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

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