My CMT Symptoms Can Get in the Way of Fun

My CMT Symptoms Can Get in the Way of Fun

Do I want to go hiking with you? Yes. But the bigger question is, “Can I?” Will the path be steep? Is it narrow? Is it rocky? You see, these things scare me and make it difficult for me to attempt to hike, even if I truly want to join you (and I usually do).

I know, looking at me, you might not even realize there is a problem. Then I get up and walk. That’s when you see the awkward, unbalanced gait, the slight limp, and the foot drop.

Now you realize that something is not exactly right.

  • You might even what to ask. But you don’t.
  • You might feel sorry for me. Please don’t.
  • You might want to help. I am getting better at accepting that.
  • You might wonder what happened to cause me to have such a funny gait. Nothing “happened.” I was born this way.

Growing up with Charcot-Marie-Tooth disease (CMT), my parents tried to never let it hold me back. I was even in dance until I had back surgery to correct my scoliosis. According to a study in the The Journal of Bone and Joint Surgery, scoliosis is present in one-third of CMT patients. I have a stainless steel rod from the base of my neck to the base of my spine to remedy this. Because of that, certain things are more difficult, but my parents taught me to do the best I can.

Try to understand my feelings

Thankfully, I have friends who understand my limitations. They know that it’s not that I don’t want to go to the ball game, it is just the thought of those steep, scary steps that keep me away. They also understand that I need to use my cane when walking great distances or on uneven surfaces.

What they don’t understand is how CMT makes me feel. I don’t tell them that it makes me feel helpless when I can’t walk up the steep staircase without assistance, or when I can’t get into the pool without a railing to hold. They do not need to know how it saddens me that I cannot run and play with my son. (He understands, but it still makes me sad.)

My friends might not know how much CMT impacts my life, and that’s because I do not think they need to know. They are supportive and helpful and know that when I cannot do something, I truly can’t. I don’t use my disability as an excuse. I just live life to the best of my ability while dealing with limitations. So instead of taking the 3-mile hiking trail, I opt for the 1-mile trail. Instead of going nonstop all day, I set aside rest time that I know I will need.

So, when you ask if I want to go somewhere and I hesitate, please know it is not that I do not want to go. It is just that I need to weigh the pros and cons of the suggested activity. I do not want to hold you up or slow you down. I know in my heart that my friends probably won’t mind, but convincing my brain of that is not always easy. I ask for your understanding and support as I navigate the progression of this crazy disorder and its unknown aspects. Most of all, I want you to know how much I treasure your love and support.

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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.

2 comments

  1. Linda Jo Nelson says:

    I understand these sentiments as well. Being surrounded with both able bodied and disabled friends is so helpful. People learn that when I say cannot, I do mean cannot. That is so different from “choose not to”. Enjoying life while staying safe and not exhausting yourself is the key. Keep on living your life the way you do everyday Jill, to the very best of your abilities. I’d join you on a very flat hike, of maybe 1/2 a mile! Nice article.

    • Jill Price says:

      Thank you for your support always!! I am so glad we meet that day on the beach!! You are amazing and I am honored to call you my friend.

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