What ‘living well’ means to me, given my CMT symptoms
There are things I want that my rare disease doesn't have to limit
Charcot-Marie-Tooth (CMT) disease hampers many aspects of my life. Because of my weakened dexterity, I often struggle using chopsticks, particularly longer and heavier ones. Extremely long walks can sometimes be difficult because I get increasingly clumsy and prone to falls as my ankles begin to tire. My right foot isn’t very mobile, so pressure isn’t distributed appropriately across my sole. That can result in sharp pains in my foot after long days.
Though I’m excited to see what feats my body can accomplish as I try to put on a bit more muscle, I probably won’t be able to keep up with all of my able-bodied friends, even after years of following a dedicated exercise regimen. Long hiking trips, bouldering, and climbing, for example, still feel beyond my ability and level of comfort. And late-night dance parties sound like recipes for pain, exhaustion, and embarrassment.
I know I’m not alone in feeling that CMT symptoms have moved some of life’s possibilities outside my grasp. But does that mean that we CMTers can’t live full lives? Some think not. After all, is it not true that many achievements are out of reach for many disabled people? Does that not mean that CMTers and other folks with disabilities experience lower levels of well-being and higher levels of unhappiness?
Defining ‘living well’ for myself
According to Payton D. Rule, a clinical psychology doctoral candidate who’s studying well-being among the disabled community and her fellow CMTers, current research suggests that such conclusions about disabled lives are often unfounded.
“There’s a lot of stigma in society that people with disabilities are just sad and tragic,” Rule told me over a video chat a few weeks ago. “I know after my diagnosis, my parents were worried about this, too. ‘What is her life going to look like? Is she going to be happy? Can you maintain your mental health with CMT?’ The good news we found in research is that the answer is yes, we can have high well-being with CMT.”
Ever since Rule and I spoke about living well with disabilities, I’ve realized this topic is something I haven’t thought about deeply. I never considered what living well means to me, or how I may reconcile my understanding of living well with a body that may never be able to achieve as much as others.
In pondering this — my physical limitations and the kind of well-being I aspire to — a few passages from a book I read recently, Fredrik Backman’s “Beartown,” continued to swirl in my mind. Throughout the fictional story, which focuses on a small, rural Swedish town obsessed with its high school hockey team, Backman highlights how life is often just a series of moments and interactions that we imbue with meaning.
In one such passage, Backman writes:
“Hockey is just a silly little game. We devote year after year after year to it without ever really hoping to get anything in return. We burn and bleed and cry, fully aware that the most the sport can give us, in the very best scenario, is incomprehensibly meager and worthless: just a few isolated moments of transcendence. That’s all. But what the hell else is life made of?”
These words resonated with me because I know that my body isn’t capable of any impressive athletic feat. And I don’t follow hockey or any other sport at all. In fact, I can write up an almost endless list of things I’ll never be able to accomplish, because of CMT or other factors. However, I know my life is and will continue to be filled with moments of transcendence.
When does a game become a transcendent experience? When do moments become momentous? What are we all hoping to fill our lives with, anyway? I suspect the answer varies from person to person. But for me, the moments and achievements that matter are those that grant me a deeper understanding of myself, the world, or my relationship with others — the transcendent moments that venture beyond physical acts and into the dimension of love and connection.
Even if I could enjoy longer walks with others, or go hiking, late-night dancing, or climbing, they’d only exist as additional mechanisms to connect with others or better attune with myself. No CMT symptoms can hamper my ability to connect or love. For the time being, as long as I can achieve those things, I feel like I’m living pretty well.
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.
About the Author
Deanna Lorraine Howell
I have CMT2, I'm 82 and try to be a daily high functioning senior. My walking is becoming limited to from here to there for a good reason.(-:
I am affected from my knees to my toes and beginning to fall easily when away from the wall or something stable. It helps my frame of mind to read your comments. Keep it up.
Kenalea Ruth Johnson
I have CMT SPG11. Of course, every day I find new problems with activities in my body that are new. I am 83 and understand that having a youth and young adulthood with a lot of falling and poor coordination I am simply one of the most CMT persons. Now the problem of disability is more apparent because I must use a walker as balance is non-existent. I have finally had to retire. The last three jobs I found that the bullying from temporarily enabled peers was so surprising that I finally gave up. I am talking about temporarily abled physical therapists, occupational therapists, special education teachers and others I worked with in different jobs.
My movement and falling may be obvious. Inside my brain and desires to be a valuable and equal employee is still the same. I am not looking for a 'silver bullet' cure. I am only looking for support to be able to move through each day keeping up my mental and physical abilities and enjoying life. I feel that each of us can believe in our abilities and be proud of our achievements. Those who look at us as beneath achievement are missing out a lot by not knowing how strong we are.
Blueox
Excellent perspective and well written. Thanks for sharing!
Patrick Moeschen
Great column and I feel the same way!!! I also love the Beartown reference. That whole series spoke to me about the quality of life and I often thought of my own disability while reading. AWESOME WORK.