Paying Attention to the Hope, Joy, and Love in Our Lives

I don’t love having Charcot-Marie-Tooth disease (CMT). In fact, if there was a surefire way to rid my body of its symptoms, I would certainly be interested. However, my life is still filled with joy, hope, and a whole lot of fun. 

Sometimes I wonder if some folks outside the disability community don’t think such a thing is possible.

Is that why able-bodied folks are sometimes resistant to consider me disabled, as if it were a compliment? Is it why the mere mention of “disabled” or “chronic condition” is enough to prompt dramatic sympathetic responses? Or that stories and videos of disability seem overrepresented in the “inspirational videos” I see shared among my local church community?

Perhaps.

But I think if I were to base my understanding of what it is to be disabled strictly on what I see in what has been termed “inspiration porn” or other viral videos and media out there, I might also think that disability is the end of everything good, that people with disabilities are mere subjects to pity, and that the entire experience of being disabled is one of misery.

While there isn’t anything wrong with depicting the struggles of disability, because disability does suck, it sometimes seems like the prevailing mainstream narrative of disability is awfully one-dimensional. 

Regarding what I’ve experienced as a CMTer, I can say that CMT and its symptoms aren’t something to love. Pain is awful, and the slow loss of abilities can be scary. But while it’s important for that message to get out, I’d love for more people to also know the happiness, humor, and joy that exists in the CMT community.

For example, I would love it if more people could see how my family and friends with CMT make an effort to listen, and how we place a premium on being real and honest. I want folks to be aware of how CMT has given my fellow CMTers and me more ways to care for one another and show our love.

Although it may have embarrassed me in the past, I now appreciate the way my father shares with me his latest tips and tricks to adapt the various tools we use every day to our CMT hands and feet. 

I’m also cognizant of how CMT offers me a greater appreciation of certain things and certain folks in my life. I have a newfound appreciation for meditation, therapy, and being intentional with what I eat and how I remain active. CMT gives me a whole new appreciation for the caretakers in our lives, professional or not. 

I think mainstream American culture places a heavy emphasis on the strength of heroes who come to save the day. I love and appreciate such heroes, too, but CMT reminds me to also treasure those who don’t just save the day and leave, but rather simply and quietly show up day after day to care and listen.

CMT is definitely not fun, and its symptoms are something I actively work to minimize. However, I do think more people ought to know that there is such a thing as CMT joy, hope, and fun. Like everyone else in this world, folks with disabilities love and are loved by others.

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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, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.