My Footprints Are Reminders of My Weakness
I leave strange footprints. Luckily, I usually walk on solid ground and don’t need to think about them.
Most days, I only encounter paved streets and driveways, carpeted floors, and grassy fields. And I like that. After all, anything that can assist with stability is appreciated when you have Charcot-Marie-Tooth (CMT).
But my adventures the past few weeks had me stepping on too much gravel. A courtyard of pea-sized gravel surrounds the West Building at the North Carolina Museum of Art that I visited two weeks ago. And last month, the N.C. State Fair came to town — 10 days of crowds, gluttony, neon lights, and makeshift parking lots covered with coarse gravel.
I’ve had many opportunities to reflect on my gait and the tracks I leave behind.
Because CMT is a nerve disease that results in muscle weakness due to certain muscles never getting stimulated, CMT-ers have different ways of walking than able-bodied people. I’m no different; I, too, have an odd gait.
But I don’t know what to call the way I walk. At the last CMT Patient/Family Conference hosted by the Charcot-Marie-Tooth Association, I learned a few terms related to gait: marching, heel strike, equine, and steppage. But none of those seemed to apply to me.
Steppage is a style of walking that seems to be popular for CMT-ers. I feel like I adopted the style when I was much younger, but never called it “steppage.” I thought of it as a “Kaiju walk,” like I was Godzilla or some other giant monster trying to clear skyscrapers in order to best smash them.
But the way I walk has changed over the years. And I don’t think it’s a steppage gait that creates the footprints I leave.
I think my left footprint is fairly normal — at least the full length of my foot is visible. My awkward gait is most noticeable in my right footprint.
My right footprint looks like a webbed foot or a slice of pizza. Or like my foot wanted to make snow angels instead of helping to propel me forward.
It’s a twist of my ankle that makes this mark. And I seem to do it with every step. I can’t help but push off from the side of my right foot instead of the ball of my foot. It’s an inefficient and often uncomfortable way of walking that seems to strain the area along my peroneal tendons. And it is a gait that is tough on the skin, as evidenced by the calluses that line the lateral side of my right foot.
It’s not always pleasant to be reminded of your own weakness. For me, it was in the form of my footprints and calluses these past few weeks. And although I’m tempted to write platitudes about how footprints represent a journey and how far we can go despite adversity, the idea doesn’t feel that real to me right now.
Reminders of your limitations can be frustrating, especially when it feels like your body can’t keep up with where you want to take it. And it can be an everyday struggle to come to terms with that.
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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.
Nicky
Dear Young Lee,
Thank you for your article which title is speaking.
"Reminders of your limitations can be frustrating, especially when it feels like your body can’t keep up with where you want to take it. And it can be an everyday struggle to come to terms with that".
This is so true.
We need a lot of courage. Every day, at every step.
Thanks for your writing (I read your other articles as well, and it feels good to recognise the same struggles and helpful thoughts)
and thanks for sharing it.
Take care,
Nicky
Alan Ivkovic
Hello Everyone,
I have been an athlete my entire life
I have played every sport, had a football scholarship at St Johns ,and have competed in physique shows, I still train 5 days a week.
I tore ligaments in my left ankle 4 years ago. Major injury was needed , I never went for it , The swelling finalliy went away after a few months , then 6 months later I realized my ankle / foot was changing for the worst .. I had no clue what was going on.
I went to my sports Chiro and he Refered me to the best orthopedic surgeon in the business. This doctor did surgeries on torn / ripped up joints / ankles for Proffesional athletes. I thought this would be a surgery fix / recovery.
I went to meet the doctor, he never even looked at my MRI. He said take of your sock , move your foot this way and back , etc.
He said you can put your sock back on , I know what you have , it’s a genetic condition . CMT
I looked at him and laughed
I said what are you talking about , this was a sports injury, I need surgery... he said no , no surgery will help you ... it’s genetic and it will only get worse .
I left frustrated and ripped up the diagnosis papers... fast forward 2 years later , my left foot is smaller than my right and different shape ...
I’m having trouble walking ... I don’t know what to do ...
I’ve accepted that I have a form of CMT
But I don’t know what to do
I’m losing a lot of ability in my left foot...
I know that experimental peptides may slow the process but what’s the point , it’s already deformed looking to me with little function , I am thinking about amputation but lost with no one to discuss this with
My call will be , if my foot is turning into an unusable body part then I’ll have it cut off ... rather have something fake bionic functional than a claw foot that doesn’t work and throws off the rest of my walking ....
Not sure where to reach out to
This is my first message to anyone about what I have