I arrived at the venue more than an hour before my friend’s wedding rehearsal. Even though the rehearsal itself was some kind of preparation and my role in the ceremony wasn’t very big, I wanted to look at a few things and prepare.
Some of the things I wanted to investigate 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 clothes racks for our suits or should we keep them in our cars? Since everything was outside, which way would the sun shine?
But I felt compelled to check other things just for my own consideration. I needed to calm my fears and nerves, especially when it came to treating my Charcot-Marie-Tooth (CMT) symptoms while attending the wedding ceremony.
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As I followed my boyfriend and his new bride down the aisle after they said “yes”, how stable would the aisle be? Was the ground paved, grassy, or gravel? What terrain would the wedding photographers pose for us? Should I bring my walking stick? How would I feel when climbing stairs with and without ankle-foot orthoses?
I think many CMTers can understand these concerns. All of this is part of the mental “CMT calculation” that goes through our heads every day.
It is such things that drain CMT for many of us. Treating CMT is not just about overcoming pain and holding a stiff upper lip when symptoms overwhelm us. This also includes planning, preparation, decision-making and the associated burdens.
Sometimes it feels like it takes work and effort just to be disabled.
Now I am more than happy to do this job, especially for my friend and an event like this. It was a privilege to be there for him on his wedding day and to see how he tied the knot.
And it was really a beautiful ceremony worthy of a beautiful couple.
Even so, I will not fail to climb the stairs wearing ankle-foot orthoses, or the pain I felt in the morning after dancing the night away in uncomfortable evening shoes.
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Note: Charcot-Marie-Tooth News is solely a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always contact your doctor or other qualified health care provider with questions about any medical condition. Never disregard or hesitate to seek professional medical advice because you have read something 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 encourage discussion on Charcot-Marie-Tooth-related issues.
