Living with CMT – Charcot Marie Tooth Type 1A

After hitting a fair share of rain in Maryland my bike chain was beginning to build up some serious rust. I bought a chain last week from the K&G online shop and when they called yesterday that it was in I decided I would go ahead and grab another chain for Tracy’s bike as well. We just got her a used 2005 Trek 520 from eBay in decent shape. I also bought a chain tool.

I watched the Youtube folks pop the pins, set the lengths, and hook the master link together with grace on their part and mine. I felt confident that I at least knew what was supposed to happen and in what order. I dug in, created a well lit work space, and got busy.

The chain tool seriously hurt my hands while trying to drive the first pin out. I know I bought the smaller chain tool and not the shop quality version, but dang. I finally gave up and tried another link. This one was better but still very stiff. I got out a pair of pliers that I could hold the V shaped body of the tool with and struggled my sweaty hands into a pair of X-large work gloves. It’s getting harder and harder to put on any type of glove. I have to get it started and then hold the edge with my teeth while I smash my fingers flat and wriggle them into the appropriate holes.

Finally, going back and forth with the tool, first pushing and then twisting, I got the pin out. The tappet and bounce of that first achievement hitting the cardboard on the floor was glorious and I rejoiced.

Next, I lined up the chains side by side and marked the pin that would allow the extra links to come off the new chain. Removing this pin was tough but much easier than the old rusty beast previously battled. My confidence grew as I shortened the new chain and then threaded it over the crank, around the cassette, and through the derailers. Then I placed the split master link, one on each end. All I needed to do was slip them together and use the pedals to create enough torque to pop the pins into place and waalah, a new chain!

All I had to do was slip them together, with my hands, using my fingertips, slip them together. I had made it this far. I tried all the tricks I’d seen online to hold the chain in place while I wove the metal tips. All of them, the tricks and the tips – to no avail. I tried being patient and really slowing down. I tried everything I could to match them up, to marry the two ends, to mate what was manufactured specifically to come together as one. I tried for an hour and a half. I screamed and pleaded. I begged and threatened. I ate lunch with greasy hands and a worried mind. My fingers curled ever tighter around the chain ends. The numbness in my hands burrowed into my consciousness, repeatedly crashing upon my hopes. Frustration. I couldn’t do this. I was beginning to realize that I couldn’t do this, not alone. The feeling washed over me until I understood what was next. I need help.

In the end my neighbor came to the rescue. He had the two ends linked up in about 20 seconds. I thanked him and smiled. I locked the break and pushed the pedal until I heard the click of success. I smiled and thanked him again.
I want to do everything I want. When I want. How I want. I want to be independent and strong. I wish it was always easy. I know who I am. I know, but I’m sometimes reminded anyways. I am, but I am also not alone. I am stronger, more independent, more willing to try simply because I know when I fall others will pick me up. Thank you for being there.

I did all the work on Tracy’s chain next and after dinner she put the links together easily. I popped the pins into place. I am the universe watching itself. I am my hands fumbling in tight spaces. We are one.

Jeffrey McElfresh
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