Finding Joy and Self-love Through Movement

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by Young Lee |

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It’s definitely not a universal truth that every person with Charcot-Marie-Tooth disease (CMT) has negative associations with athletics and grade school gym class. However, because many of us with CMT have limited mobility and weak ankles and hands, we tend not to excel in many sports or gym and playground activities. And this can sometimes lead to feelings of inferiority.

At times, I’ve had such feelings. I have memories of anxious school mornings spent wondering what sort of embarrassment I’d have to subject myself to in gym class or on the playground that day. And looking back, it’s a bit of a shame.

It’s a shame because exercise can be a great joy. It’s a shame because some of us with CMT bodies continue to carry negative associations with exercise and going to the gym — associations that may hamper us from giving certain sports or activities a try. This is despite the fact that many exercises and movements have a lot to offer CMT-affected bodies.

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I now hold quite a bit of regret, as I’ve come to realize how feelings of inadequacy and insecurity have prevented me from moving a bit more and trying a few new things in the gym. It seems like I inadvertently learned all the wrong lessons from early gym classes.

I didn’t learn the proper form of exercise movements, which exercises work which muscles, and how to appreciate and celebrate growth and progression. Instead, I developed a perception that anything less than mastery was a form of failure. For many years, I thought physical strength was something you just innately had — or didn’t.

I’m definitely still learning and developing my understanding, but I’m beginning to view things a bit differently these days. I never thought I’d get to a point where I actually crave going to the gym most days, but, at least for now, I’m there. And it feels good.

Granted, it’s certainly true that I can’t do everything I’d like to because of my limited mobility due to CMT, but with the guidance of a personal trainer, I’ve come to find at least a few exercises and movements I like and enjoy. And from that, I feel like I’m learning, growing, and progressing in ways that make me proud and happy.

I’m growing to appreciate more fully the fact that everyone has a different body with different traits and quirks, and the more we move our bodies, the more we each learn about them. Movement and exercise can be as much about self-discovery as meditation, reading, and quiet contemplation. And ultimately, self-discovery can lead to a deeper sense of self-love.

It’s unfortunate that due to my own fears and feelings of inadequacy, I may have denied myself such things. It’s unfortunate that sometimes sadness and mourning can also be a barrier to rewarding oneself. And it’s unfortunate that many others, I suspect, also have felt unwelcome in the gym and other areas where physical activity is at the forefront, whether due to self-doubt or how others have made them feel.

At the same time, I think it’s important not to ignore some problematic things that commonly come up when folks talk about exercise. For example, I don’t think anyone should feel forced to move and exercise at the cost of other aspects of holistic well-being. Looking back, overemphasis on the weight-loss potential of exercise is something that actually kept me away from the gym for many years.

Gym accessibility and the lack of investment in exercise for folks with limited mobility are other important matters I don’t see discussed as much as these topics deserve.

I like to believe that one of the most rewarding reasons for living is so that we can each learn to more effectively spread love and appreciate being loved. And because of that belief, I feel like each of us has a right to access and feel welcome in places that concentrate feelings of love, life, and connection. This includes places where folks can commune with nature, enjoy music, and appreciate art — and yes, also work up a good sweat.


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.

Comments

Sarah avatar

Sarah

This article was so validating for me. I was that uncoordinated child on the playground at school that was always picked last for teams. I dreaded Field Day/Sports Day and would ask to stay home on those days because I was so embarrassed by my INabilities. I've always been an extremely slow runner, too. But, as a young adult I joined the military and it forced me to maintain my fitness. I'm grateful for that and think it may have helped to delay the physical manifestations of CMT1a. Since retiring from the service, I've found it more and more difficult to push myself physically. It's exhausting - physically AND emotionally. In fact, the fatigue and pain I feel after exercise has become a deterrent, a barrier to maintaining my physical fitness. I would be very interested in small, efficient exercises I could do while sitting at my desk during work, or little activities I can incorporate throughout my day. Do you have any recommendations?

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Eric avatar

Eric

Try Jill Miller's "Yoga Tune-up." Made me stronger and healthier than ever in my life, starting at 41, helped me lose 65 pounds by increased metabolism.

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Robert Thomas avatar

Robert Thomas

I'm sixty-two and despite my CMT 1A I have been going to the gym and lifting weights 3.5 times a week and walking every day after work. I have drop foot but have adapted the Thermoskin foot stabilizers and get around very well in them, they fit in all my shoes and no one can see them. I'm also a vegan and this lifestyle helps keep me fit. Weight bearing exercises are important for maintaining bone strength as you get older. Staying fit and strong helps counteract and offset the CMT to some degree (I find).

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Vivienne avatar

Vivienne

I am 49 I don't know what type of C.M.T I have. I have had more than 25 orthopedic surgeries on my feet , operations started at around 14 years of age. I had to wear calipers that big bulky and hard to wear. Going to school was hard as I got picked on and bullied for my disability. This caused me alot of self esteem issues. After giving birth to my son at the age of 27 I decided enough of having a desk job and against all my medical professionals advice I became a Personal Trainer, I train myself every morning for and hour to 2 hours either boxing, lifting heavy weights, spin bike, Pilate reformer bed and even with my now fused ankles jumping off a reebok step. I have a periodized training schedule I have created and pushing myself has reduced my fatigue. Now my hands are effected I have lost my thumbs but I am now strengthening my forearms to do the work for my weak wrists until they have to fuse them aswell. Keep moving and listen to your body, it is actually stronger than you think.

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Jim schneider avatar

Jim schneider

I also try to exercise regularly . Having issues with my knee. Frustrating.

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James schneider avatar

James schneider

Do the thermoskin stabilizers help with balance?

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