Until recently, I never had intentionally ventured to learn more about my disability. In retrospect, I was spectacularly uninterested in this aspect of myself. As a child, I think I felt like I inherently knew all I needed to know about Charcot-Marie-Tooth by merit of having it. I knew it was genetic. I knew it made me clumsy. I knew our family received handicapped parking permits for our cars. And I knew it was the reason my father’s feet looked different from those of anyone else I knew.
I looked at my father as a road map to see what CMT had in store for me — and it honestly didn’t seem bad at all. I admired my father (and still do), and as any kid believes of his father, he could take on the entire world by himself.
Now as an adult, I’m starting the journey of learning more about CMT and thinking introspectively about how it has affected me and will grow with me. Recently, learning some facts about CMT made me think about my identity and what I look to for stability in life. Though sometimes I’ll admit, it hasn’t been the most uplifting experience.
Some facts I found fascinating. I feel embarrassed to admit it, but until a few months ago, I didn’t even know there were multiple kinds of CMT. Reading up on the latest research on CMT has inspired me and made me more optimistic about a future with CMT.
I remember a time when I asked my father about what he’d found out about CMT research since his diagnosis and he simply said, “That there’s no cure.”
While that still may be true, the strides made in gene therapy, gene mapping, and drug development are truly amazing. And the creation of better looking and more comfortable ankle-foot orthoses has been a game-changer for my family.
However, I also didn’t know the symptoms of CMT are so wide-ranging. I didn’t know it is linked to sleep apnea. I had no idea it can lead to hearing loss nor did I know it is associated with kyphosis. And since actively searching for more information about CMT in an effort to take greater control of my life, I heard stories of CMT affecting folks to such a degree that they can’t walk up several steps.
And while I think it would be too dramatic to say learning these things made me fearful of my future with CMT, it’s forced me to take some time to reflect.
CMT hasn’t taken too many things from me. I personally never had any aspirations for great athletic achievement. In general, I’m much more of a homebody. And although I had always assumed CMT would cause me some pain in life and gradually I may lose flexibility, potentially losing my hearing and not being able to walk up two or three steps weren’t something I ever considered before.
I’m learning that CMT affects everyone differently. I’ve heard it said that CMT isn’t really just one disease, it’s perhaps hundreds — a different one for every mutation and variation. But it’s hard to live while thinking about all the ways your genes can screw you over.
I’ve said this before, but I’ve found that it’s important to remind myself that ultimately no one knows what the future has in store. And no matter what happens, I can lean on the core aspects that make me who I am. Reminding myself of these things and choosing to chase even the smallest everyday gains have been a bit of a useful recalibration for me.
Regardless of what CMT or other factors may take from me, my faith, my family, and my passions stay the same, because I choose it.
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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