One of the first things I did after being diagnosed with Cervical Dystonia was find a support group on Facebook. I wanted to know how to live with this condition; what to expect and how to function in it. I found a wonderful group of people who share resources and information, and listen when a little venting is needed. What I did not find was step-by-step directions which is how I roll. Drawing me a picture is even better or actually seeing someone live their day out with this condition would be ideal. Funny thing though, I don’t know a single person with Cervical Dystonia except those I’ve met on the Facebook page. I have never even seen anyone who seemed like they might have it in my comings and goings out in the world. Where are they all?
That question was asked on the support page once and someone answered, “We’re hiding in our homes.” That would be one way of dealing with it I suppose. I spend a lot of time at home anyway and some days it is definitely the more comfortable thing to do, but comfortable gets boring after awhile. I don’t want it to be said of me after I’m gone, “She lived a comfortable life.” I want to be remembered for having done something with my life, for having triumphed over adversity, for being brave and bold – not comfortable. I’m not quite there yet though.
I think I’m still coming to grips with my new reality and still mourning a little for what I’ve lost. I’m still trying to figure out new ways to continue doing the things I enjoy. I’m still searching for my step-by-step directions. And that’s the thing. I’ve been trying for months to figure out how other people live day-to-day wth CD. What I really need to figure out is how I am going to live day-to-day with CD. How other people live their lives is not as important as how I live MY life.
I’m not saying it’s not helpful to seek suggestions from my fellow afflicted. I believe that is absolutely valuable. The problem was that I was looking for someone who could tell me exactly how and I don’t think that’s realistic. We are all different. We do different things in different ways and in different environments. I need to figure out how to cut vegetables, for example, in my kitchen with my knife while my head is moving without cutting off my fingers. I need to work out how to sit and support my head so that I can at least semi-focus on whatever crochet project or book is in my hands. Thank God I can type without looking at the screen or the keyboard. 😂
Most importantly, I think, I need to let myself cry when frustration overtakes me and I want to throw whatever I’m trying to do against the wall (I don’t think I should do the throwing though. Crying is less destructive.) I need to be okay with being broken and cut myself some slack. I need to stay as positive as possible, let the tears come, rest when I need to rest, then get up and get back at it. Life is a gift and I want to enjoy as much of it as I possibly can. I think one way to do that is to accept the fact that there is no EXACTLY how and just find MY how.