Defusing the Memories That Weigh Me Down

Young Lee avatar

by Young Lee |

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wedding with CMT / Main graphic for column titled

I’m a pretty happy person living a very relaxed life. Nevertheless, some of my memories make me cringe, cause me grief, and prod me with regret at inopportune times.

When I think about my archive of memories, many of the not-so-lovely moments are colored by Charcot-Marie-Tooth disease (CMT). Sometimes I’m still surprised I haven’t gotten over them.

For a long time, whenever I encountered CMT moments that challenged me or made me question myself, I’d say, “Hey, in 10 years, I’ll probably forget about all this stuff. And if not, I’ll at least be able to laugh about it.”

However, I still dwell on many things, and I haven’t been able to let some of them go. I still fail to see the humor in them.

While it’s healthy to feel sad, angry, or frustrated sometimes, I don’t want cringey or painful aspects of my history to get in the way of living in the present. So, I’m actively learning to confront some aspects of my past. And in the process, I’m learning more about myself — what I’m afraid of, what I feel ashamed of, and what I find difficult to forgive.

I wonder if this is just part of what it means to grow up and learn to live with a history that wasn’t always sunshine and rainbows. I wonder if other CMTers have similar regrets and childhood shame that prod them whenever they’re sulking.

For example, I remember in elementary school when kids would yell, “Run, Forrest, run!” In middle school band class, classmates would tease me for my “low hops.”

Amid the waves of memories from attending church during my formative years, I remember church aunties who would dote on me but also worry over my hunched back, playing armchair physician. There was also the angry kid in high school who once referred to me as the “class hunchback.”

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In my college years, I remember hanging out with kids from the hip-hop dance crews who seemed confused by how stiff my ankles were, and how some of the most basic dance moves seemed out of reach for me.

“No, I don’t think I can six-step as fast as you guys.”

“I can’t toprock like that.”

“No, I don’t think I can jump higher than my knees.”

I once thought all these memories would eventually disappear, and I’d be able to put them to rest. However, I’m learning that sometimes regret and shame don’t simply fade away.

I need to learn to defuse the memories that continue to trouble me. I’m learning to do that by confronting my pride, learning to forgive myself, and sometimes apologizing and asking others for forgiveness.

I have work to do on myself. I think many of us do. However, I’m doing my best, and I’m learning to reconcile some of my regrets and shame, give myself a bit of grace, and live in the present.

This is an important aspect of learning to live with CMT, and it’s worth thinking about.

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

Comments

Mark avatar

Mark

Hello Young I can so relate to this article. .. As I to have suffered with CMT1A myself yes its extremely challenging to say the least..I love walking daily and I do so however like you I find it extremely hard. I had to take the current orthotic out of my shoe as it was ripping very bad, I now walk with no orthotic in my left shoe, both mu feet sre weak I stumble and fall scuff my feet daily, ect...I am in my mid 50's ,,,,i am in the process of getting custom made orthotis for both feet however its geared to be stronger for my left as its alot weaker..

I also know the feeling of feeling shameful i use a walker daily and in some cases its quite embarrassing, however i try not to let it get to me, i am also due to other health challenges am skinny and my legs look like chicken legs, i have had a few people call me chicken legs, i don't wear shorts becsuse of this...hence the CMT ...

I am proud at times yet feel shameful at times as i am limited like you..

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Jennifer Halford avatar

Jennifer Halford

I too as a child was bullied because of the way that I walked and things that I couldn't physically do because of my CMT. This continued throughout my high school years. I was called cripple and every other name that you could think of. No boys would ask me out on dates. Through the years I've learned to handle my CMT with a sense of humor but those memories still haunt me sometimes.

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Caryn Wise avatar

Caryn Wise

Thank you for sharing. I was always afraid for people to see my CMT and pretended (unsuccessfully) it didn't exist. Those moments of teasing or cruelty by other kids are still so clearly etched into my memory. Thank you for the reminder to live in the present and not the past.

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