I Don’t View CMT As a Struggle. Here’s Why.

“I appreciate the struggle. I have mobility issues, too.”

A person I had just met said this to me one day. I was uncertain about what she meant. Did she think I struggled with things? Did she think I see everything as an obstacle? I talked to her a bit more after my class. She went on to tell me about her medical issues. I nodded and told her I hoped she got relief from her problems. She then asked what my condition is. I told her I have Charcot-Marie-Tooth (CMT) and got the usual blank look. I gave a brief description of it. She asked a few more questions. We chatted a bit more before I left.

I left the room and began to wonder if I see this disease as a struggle. Some days, yes, but most days, no. Don’t get me wrong, certain tasks are a struggle, but I try not to focus on that. I really try to do what I can and as much as I can. CMT is not the easiest thing, but it is not the worst thing, either.

Yes, mobility is an issue, and certain surfaces are harder to walk on than others. Loose gravel really tests my balance, and even with my cane and my ankle-foot orthotics, I still find it difficult. Cobblestone and uneven pavement often test my abilities. But I do not let it stop me. I have learned to seek help, either from someone I am with or a stranger, if needed. It is better to ask than fall and hurt myself. More often than not, people are more than willing to lend a hand. I am learning to give people a chance.

I still do not see this as a struggle, but more of an awareness in the sense that I need to be aware of my limitations and needs. This is not always easy because no one wants to admit they have limitations. Yet, it is so important to know and keep yourself safe. I am not saying I do not try things or find ways to do things to accommodate my needs — I do both. I do, however, know that I need to build in rest time and take things at a slower pace. I may not be able to walk the entire distance without taking a break, but I will get there, slowly and surely.

I try to remember, “Slow and steady wins the race.” And that this really is not a race, anyway. I may struggle with some things, but I do not see CMT as a struggle.

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