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How It Feels to Fall Frequently Because of a Progressive Disease

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Not again, I think to myself. Not in any hurry to face anyone, I stay on the ground, my head resting on my forearms.

“Oh my gosh, are you OK? Do you need ice?”

I reply politely that I am fine, and I do not need any ice. I tell them jokingly that it happens all the time, although they do not seem to pick up on my humor.

For me, the threat of falling is ever-present and looming. At any time and in any place, I know in the back of my head that I could be on the ground in a matter of two seconds thanks to my diagnosis of Charcot-Marie-Tooth disease, a peripheral neuropathy that has caused my nerves to degenerate and my muscles to become remarkably weak.

Although it has led me to meet many amazing doctors and physical and occupational therapists who have undoubtedly changed my life for the better, my CMT has affected my mental health as well as my physical health in a myriad of ways as I have battled through my teenage years. Each time I fell, my self-esteem would hit the ground with just as much force as my body. Every fall would send me into a depression as I began to question my capability to maintain the normalcy with which I was trying desperately to live. I perceived my physical shortcomings to be statements of my worth as a person, which could not have been further from the truth.

Now, at 19 years old, I am just beginning to understand that CMT is not my defining feature, nor is it a determining factor of my value in any way. Now, I realize that CMT is a trait I happen to have, just like I happen to have dark brown eyes and a profound love for Taylor Swift. Although it may seem as though it is consuming me and stripping me of all the things I used to value, CMT is a large part of the reason I am me, and for that, I am grateful.

As I sit on the ground and recover from my fall, the familiar feeling of embarrassment and dread washes over me. Taking a deep breath, I look for a chair to pick myself up, and I stand up again. Before I continue on, I close my eyes and tell myself what it has taken me quite a while to realize: My worth is not determined by how close I am to the ground or by how capable my body may be.

Getty image by Madrolly.

Originally published: January 16, 2020
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