An Open Letter
This is an open letter to friends, family, community, and colleagues. Initially, I wrote this and shared it with all my colleagues at the library. But I wanted to post it here as well, because by sharing it here everyone can be on the same page.
Hi AWPL Friends and Colleagues,
I wanted to share something personal about myself. I have a neurological condition called Charcot-Marie-Tooth (CMT) disease. I've had it my whole life (it's part of my DNA), but I've only started to experience noticeable symptoms from it in the past few years.
CMT primarily affects my hearing, hands and feet:
My hearing is affected in my auditory nerves, which makes sound confusing and distorted at times. I also experience profound tinnitus and hearing loss from CMT.
My hands and feet are progressively losing their connections from my peripheral nerves inward (over years' time).
Due to my hands and feet being affected, I'll sometimes lose my balance, run into things, or tilt randomly.
What this means for you:
You may try talking to me and I simply don't respond... or I look at you like you have two heads! Please don't take offense; either I truly did not hear you and missed it completely or I'm using as much brain power as I can muster to try and figure out what you've just said! My auditory nerves couldn't send the signal all the way where it needed to go, so I'm trying to fill in the blanks that my auditory nerves couldn't deliver.
I may ask you repeat something you've said. Please work with me in this, and share again! If I still struggle, you can try and switch some words. It means a lot to people with hearing loss to be included in whatever you're trying to share. š
You may see me have a spontaneous coughing fit and need to excuse myself for a few minutes. This happens from time to time; it's a nerve spasm that takes effort to recover from using breathing exercises.
You may see me wearing hand braces when shelving books or doing other clerical type tasks.
You may see me suddenly tip askew or run into things... my coordination gets pop quizzes throughout the day.
While I'm doing pretty good in my feet these days(!), you may see my rocking some rad AFO braces someday.
If you're curious to learn more about CMT, you can find more here: https://cmtrf.org/what-is-cmt-disease/
Iām happy to chat more in-person (or via email if you're more comortable with that) if you're further curious, but mostly I just want to keep you all in the loop and on the same page since we all work together in community and collaboration. Thanks for your support and understanding!
I'll leave you with my personal mantra: ~ Wiggle with the wobble - Go with the flow ~
Best,
Kate Algera
