my life with Charcot Marie tooth disorder

I am a 14-year-old living with CMT. Charcot-Marie-Tooth disorder is a genetically inherited neuromuscular disease that typically affects the nerves in your hands, feet, and legs. As a result of CMT, my hands tremor, my legs spasm, and my feet hurt a lot due to my extremely high arches. There are six types of CMT Disorder, but I’m only going to talk about one, CMT1A. It’s the most common form and the one I happened to be diagnosed with. My mother inherited it from my grandmother and my grandmother inherited it from her mother, and so the cycle continued with me.

Emily Kidd & Her CMT Syndrome Journey

I remember as a little kid that I used to walk on my toes. There was never any pain; it was just something I did. But I always wondered why I didn’t walk like the other kids. In my young mind, there had to be something wrong with me, some reason why I wasn’t “normal.” As I grew, so did the symptoms. The ballerina-type walking stopped around second grade, and for a while, my abnormal tendencies vanished; I was just like the rest of the kids. So, you would think this is where I found my place. I’m just like everyone else now, what could be wrong? But once again, a child’s perception of the world only goes as far as they are taught.

With startling speed, fourth grade slipped upon us and we had P.E. Our fun time of running around the whole hour was over. Now we had specific exercises. It should not have been hard; we had to run, or in my case walk, around a big field. Four laps equaled a mile. Once you completed your four laps, you could go play, unless it was what we all referred to as “Run Day.” It was a day in which our teachers would time the class and we would run until we hit a certain number of laps. I was always the last to complete the exercise. My lungs would scream at me for even running a few feet, and my abdomen felt as if tiny knives were buried deep inside, twisting with every new step.

The jokes and petty insults flew around me as I walked off the field those days. Even as young as we all were, we knew how to fight with words. Cruel words that hurt, yet left no physical mark, would taunt us for years to come.

More time passed, and I had graduated into sixth grade. We had just gotten a new P.E. teacher, but I assumed the class would be similar to earlier years with lots of running. Oh how life surprises you; his style was different, more military-like. So, for thirty minutes a day, we did sit-ups, curls, push-ups, and more. As time continued, my body rejected it. As others were developing slight muscles, my arms remained the same. It pushed me to the limit-the pain searing through my small limbs. And just like my former years, I was ridiculed. I could not perform as everyone else could; I was the weak one. Sometimes there is a time in your life when you just simply cannot take it anymore-when your mind and your body, is done.

We had just started our very last exercise. It was an easy day however and the teacher only required seven push-ups and we could be finished for the day. As the shouts rose with every completion, I pushed myself to forget the excruciating pain and just focus on finishing with my classmates. As soon as I finished, a boy called out to me, his voice taunting me, the corner of his mouth upturned in a smirk. He asked why I was not doing them correctly; this is where and when I admittedly lost it. I screamed, my shouts of fury directed only at him, my vision blurring as tears mixed with the heavy moisture that lay on my skin. I told him that I was trying, that it was hard. I did not have the strength or stamina as they did and that it took a huge toll on me! At this point, his face morphed from disgust to shame, and the anger I felt disappeared. I had said what I wanted! I walked out of P.E that day with my arms aching and my legs like jelly, but happier.

Life with CMT Syndrome

You see, living with CMT is hard. It will make you yell some days and cry others. It will require you to push yourself when you think you can’t walk another step. Your body will reject help, and some days it seems to mess with the progress you have made. But there are also times when you will be screaming for joy because you climbed a tall rock face, ran a mile, or jumped higher than you ever have before to catch a flying ball. It won’t all be wonderful, but when you reach your goals, the triumphs you accomplish will far outreach the failures.

I am a 14-year-old who is fighting CMT.

12 Comments

  1. What a story..GO Emily you are amazing and beautiful inside and out. The early teens are such a hard time figuring out who you are and how you fit in. I see my 14 year old granddaughter going thru the same thing but she too is a fighter and is developing an amazing mind. Not to say it doesn’t hurt but so many positives out there …keep your faith!!

    • Your story is wonderful in ways we see ourselves, questions answered, fears faced, and finally an answer to who we are. There are so many stories in my head and at age 65 were finally answered. Now I know the “why” I couldn’t run fast enough, why my ankles and feet always hurt, and why others always laughed at me in exercise class.
      Thank you Emily for sharing your story! Hugs to you, Lois

  2. Boy what a familiar story. So well written… i felt like it was about my life from early tip-toe walking, to walking around a field while others ran, feeling angry and ashamed… all of it. I wish 14 year old me had a friend like Emily!

    • I’m turning 69 and relate completely to the years as a young girl and teenager. Emily your story shows you are a strong young woman and I believe you will be amazing .
      I have physical scars from surgeries I had in my feet , but the emotional scars were much worse and have lasted to this day.
      CMT is a tough disease but thankfully I am tougher and keep fighting.

  3. This is Dee Dee, Emily’s mom. I have CMT too as she said. I wish I had the courage she has when I was 14. She is an inspiration to us all!!! I love you Em!!! I have been wearing AFO’s to work now for a couple years but I don’t wear them outside of work. Lainie has given me the courage to wear them more often, which my family has been happy about. So thx Lainie for your awesome website!

  4. Emily, you’re awesome. I too had the same PE humiliations and I could not figure out why I was so bad at all of it. It was a rough time. Your confidence is so healing. It will sustain you.
    Julie

  5. You are an articulate and strong young woman. I am so glad that you are learning to advocate for yourself, a skill that I only honed as an adult. Keep pushing forward! Brava!

  6. Awe you gave me goosebumps 😁 I love your courage and your spirit. You are a gorgeous girl and I love your style. I also have CMT and totally understand how each day can be totally different from the next. Some days I know as soon as I’ve stepped out of bed if it’s going to be a “ cmt “ day as I’d call it. I’ve learned through the years and through my personal experiences to be open and honest about my disability and to express if I’m not having a great day ( energy or pain wise…or both). People then become more compassionate and understanding if I’m not able to keep up. Don’t get me wrong….this isn’t an easy task! I’m stubborn, hate admitting this , want to do what everyone else does BUT it’s just not worth hiding it causing unnecessary pain and fatigue. Doing things in moderation and with modifications is KEY and is OKAY! You’ve got this Emily! 👍🏻😁💗

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