My Introduction

[Guest guest]

Hello Everyone-

My name is Palmer, I am a senior at Wesleyan University in Connecticut and

was diagnosed with CMT five years ago, at age eighteen. I would describe myself

as moderately symptomatic - I have a hand tremor, trip often, and tend to

execute tasks

involving dexterity much more slowly than my peers. I love to ride my road

bike, make yarn on my spinning wheel, and work on farms, and I've found that

perhaps my biggest challenge with CMT is finding patience and forgiveness in the

face of my limitations, being

grateful for the incredible gifts I do have.

I have been seeing a doctor yearly at Mass General who is incredibly

businesslike and pessimistic in his assessments and prognosis - I always leave

the hospital in tears. This experience has caused me to largely deny the

presence of CMT in my life, and my acknowledgement of the disease has thus far

been for the most part private and limited.

As I continue to grow, however, I feel myself coming to the realization that

this is my body, and if I don't take resposibility for self-care I am doing

myself a great and unneccessary disservice. Clearly it is in my best interest

to honor and nurture and attempt to understand the function that I have. I am

inspired by the ownership and optimism displayed by the members of this

community and I hope to learn from your example.

A large part of what has catalyzed this exploration on my part is a class I am

taking called the Sociology of Health and Illness. We are required to complete

a substantial research project on the topic of our choosing, and I would use

this opportunity to learn more about CMT. The focus of the class is social

rather than scientific, so the research must concern the more personal aspects

of the disease. Questions I am considering include - What does

it mean to have an invisible disability? How do people nurture and empower

themselves in the face of a disease that is not yet fully understood or treated

by the medical establishment?

I am not entirely sure of the specific direction the project will take, and

would welcome any and all input from members of this community. What questions

do you think are worth asking? What areas of the experience are particularly

rich or complicated? What

sources have helped you come to terms with CMT in your life?

If you have made it to the end of this post, thank you kindly for your time.

best,