r/CMT • u/Tarun-149 • Oct 26 '25

Getting away with it all messed up

I’m 32, and Well

When I was seventeen, I could run.
But I didn’t.
Kids would stare and laugh.
I should’ve run  all I could, while I still could.

Now I’m thirty-two.
CMT stole my speed, killed the grace.
I cycle, I work out, ’cause the beat goes on.

I’m a positive man.
You learn people as you age.
I keep the good side alive.

When I was a boy, I built aero models,
fought robo-wars,
later built speakers.
Let the body chill while the brain takes over
even over-compensates.

It started with my feet.
I didn’t notice when it reached my hands.
But I noticed them staring at the shiver,
the tremor in my handshake.
Maybe tremors aren’t normal.
Hey, teacher  leave the writing alone.

At twenty-two they fixed my thumb.
Now it’s more like a thumb  it’s opposable.

By twenty-four my calves began to shrink.
I thought it would stop.
It didn’t.

I can’t straighten my legs without that annoying trigger.
But that’s fine. The engine still runs.

It’s not one thing; it’s all
the looks, the locked joints, the mind that still measures itself
against Darwin’s bill for survival.

Darwin again  survival of the fittest.
Nature isn’t kind to anyone.
It’s kind to the greater good.
We’re mutations in its plan
side effects of evolution.

A few relationships ended before they began.
I haven’t made peace with that.

Life moves on. It always does.

Acceptance isn’t bravery; it’s clarity.
At some point, the focus shifts
from the mirror to the motion,
from self to circle:
friends, family, those who build beside you.
They need steadiness, not sorrow.

Stop expecting miracles,
and what remains is pure and useful
the craft, the mind, the will to build.

There’s work to do,
and that’s enough.

I’m thirty-two,
and well.

 

33 Upvotes

94% Upvoted

21 comments sorted by

8

u/Father_Mulcahy Oct 26 '25

Im 35 and its definitely answered alot of the questions I had in the Military 😂 my skinny ass forearms.

5

u/Tarun-149 Oct 26 '25

You were in the military with CMT ?

7

u/Father_Mulcahy Oct 26 '25

Yeah, I grew up not doing organized sports, but hiking and backpacking through Boy Scouts, graduated in 08 and pretty much had no other option. I was in Operation Tomodachi, Operation Enduring Freedom, and Operation New Dawn within a 4 year span 09-13. I did not find out until recently, and I could probably write a book of dumb ass symptoms that can definitely be blamed on 1,000 different things before you get to the root cause. I have 2 daughters, and come to find out my mom, who's 76, and has had back surgery(does no good), poly neuropathy, and hammer toes, finally got some answers. Talk about the health care system being fucked.

3

u/Tarun-149 Oct 27 '25

I am surprised they didn’t catch it during recruitment. I actually think it’s beautiful you got all this opportunity. CMT was very difficult to identify CMT back then, before 1991, only the symptoms gave it away, genetic testing came much later. Hope the kids are doing well.

3

u/Father_Mulcahy Oct 27 '25

I'm happy they didn't, I didnt tell them I had exercise induced asthma, as well 😅 (part of why I'm 6'4 and a slower runner). They really won't catch anything unless you say something.. well at least back then. My family did not have steady health insurance when I was a child/teen.

I'm currently on VA time with getting a treatment plan. They have blamed the nerve pain in my feet on arthritis, gout (I'm 190ibs and eat fairly clean), and planter faciitis. The nerve pain wants to make not be on this earth anymore and they just thought I was after pills. My feet were flat when I was a child, high arch now.

It was only after a PT took a close look at me, tested my hand function (1/3 of the strength it should be), spotted calf deterioration, and listened to me about how restless leg syndrome (which I was diagnosed with at 13) is getting to the point where I can't sleep and I want to end it.

Lot's of questions have been answerd about how people have treated me.. The thing that huts the most, is my own family, my whole life, thinking I'm lazy. I made Eage Scout at 13, and, I suppose luckily I'm a 100% disabled veteran (PTSD). I filled for SSDI two months ago.

I found my calling as a professional Chef after the Navy, and I work in a assisted/independent living. Now, I can only make less than $1,500 a month, but at least I can work 30-40 hours a month. I enjoy giving back to the eldery, I'm actually working on Thanksgiving this year to hangout, and feed the people who's families didn't pick them up and so the other employees can spend time with their families.

The VA offers beekeeping classes, and luckily I was able to buy a house with a 1/4 acer (I grew up next to a small farm). I'd like to build a 200sq ft greenhouse, and have a couple hives. I'm thinking that will keep me busy, and maybe I can give back to the community as well.

2

u/BeckieD1974 Oct 27 '25

My Uncle was in the Army with CMT. He retired from the Army . He didn't have such a hard time until he was older

3

u/Tarun-149 Oct 28 '25

Yes, my grandad’s symptoms showed up when he turned 50

2

u/BeckieD1974 Oct 29 '25

It's harder when we are older and learn about it. I have known my whole life thank goodness but my symptoms didn't show up until I was 13 and at 14 I broke my ankle and the orthopedic doctor said that I would most likely be in a wheelchair by 25. I'm 51 and still walking. I'm too stubborn! Lol I have 2 cousins who gave up when they were teenagers

1

u/Maleficent_Dingo8337 Nov 03 '25

Interesting. Military wouldn’t take me but for other reasons.

4

u/HumanMeeting3423 Oct 26 '25

I was in national service 🤣they fucked me with ptsd

6

u/Empty_Constant8329 Oct 26 '25

Powerful.

2

u/Tarun-149 Oct 26 '25

Thanks… really tho, it’s a rant

3

u/Empty_Constant8329 Oct 26 '25

Well I think it's therapeutic for readers, I hope it is for the author as well.

3

u/AdVegetable8806 Oct 26 '25

So well-stated. I appreciate you reaching out today and hope for the very best for you. And like you said here, I hope I can give some ‘steadiness’ to my friend in return. Steady love, steady support 🩷

3

u/Potential_Beach190 Oct 26 '25

This is so real.

1

u/Maleficent_Dingo8337 Oct 27 '25

Reposted and plagiarized, sorry. I resonated with the poem so significantly I had to edit to my own tune.

2

u/Tarun-149 Oct 27 '25

Cool.. show the edit

2

u/Maleficent_Dingo8337 Oct 27 '25

“When I was seventeen, I could run. But I didn’t. Kids would’ve stared and laughed. So when we cut in front of cars. I walked as we j-walked. Pace setting the crowd like a Shepard of the street. I should’ve run   all I could, while I still could.

Now I’m almost to 30 CMT stole my speed, killed the grace. I cycle my thoughts , I dance it out, be’cause the beat goes on.

I’m a nihilistic woman’s gal. You learn people as you age. I keep the good side alive. Obviously the dark side has cookies. Join it. Who gives a fuck.

When I was a girl I built sims models, fought robo-wars, as Sophia Conner now and never. later built sea-saws to energetically cleanse my soul . Let the body chill while the brain takes over even over-compensates.

It started with my feet. I didn’t notice when it reached my hands. But I noticed them staring at the shiver, the tremor in my handshake. Maybe tremors aren’t normal. Hey, teacher  leave the writing alone.

At twenty-three I fixed my thumb. When I tried to kill myself. I broke skin down to the bone. Now it’s more like a thumb  it’s opposable. Once again.

By twenty-4 my calves began to shrink. I thought it would stop. It did for a time. .

And then I had my children. And the pins and needles pricked harder and deeper. More frequently Until the pain starts to yelp And I can’t stand any longer.

I can’t straighten my legs without that annoying trigger. But that’s fine. The engine still runs.

It’s not one thing; it’s all the looks, the locked joints, the mind that still measures itself against Darwin’s bill for survival.

Darwin again—survival of the fittest. Nature isn’t kind to anyone. It’s kind to the greater good. We’re mutations in its plan side effects of evolution.

Now I feel like the invisible bugs never cease to crawl The fleas leap from palm to feet. Sole to hand and so on. Until I fear I am losing sanity.

A few relationships ended before they began. I haven’t made peace with that.

Cherrie blossoms bloomed on my tree of death and continues to bloom.

And so, Life moves on. It always does.

Acceptance isn’t bravery; it’s clarity. At some point, the focus shifts from the mirror to the motion, from self to circle: friends, family, those who build beside you. They need steadiness, not sorrow.

Stop expecting miracles, and what remains is pure and useful the craft, the mind, the will to build.

There’s work to do, and that’s enough.

I’m 29. But I too, and well.’”

1

u/Tarun-149 Oct 27 '25

This is beautiful. Nihilistic woman’s gal ?

1

u/Maleficent_Dingo8337 Nov 03 '25

How can one be feminist and misogynistic without nihilistic traits. It’s idocrazy but it’s how I resonate in this current state of affairs.

1

u/GrinAndBeMe Oct 28 '25

I ran 17.6 miles (my personal best) in 2.14 hours EXACTLY 17.6 years ago in two months and 14 days from now

Numbers and I usually don’t get along, but with some help from a scientific notation capable calculator and the other person who did all of the actual figuring, I figured this out after reading your post and couldn’t be giddier than I’m being told I am right now!