I have been trying to think of another aspect of Charcot Marie Tooth disease that I could talk about, while awareness month still exists and I am prompted to get the information out there. I confess I have gotten distracted as of late, and one thing that took my attention away from another post (and gave me a huge SHOCK) was that I won the National CMTA's "I am a STAR" award. My parents nominated me for this award, for everything I have attempted to do to raise awareness and funds for research, and I am very thankful to them for doing so. I am also deeply honored that the CMTA chose me! And did I mention shocked??
I guess the shock comes from being such a private person...I'm not used to the attention being on me in any way, and though I'm very forth coming with information when people ask me for it, I prefer outlets like this blog to share my story. Here in the quiet of my home, I can spell check...take my time...edit my thoughts...and delete complete sentences about virtually anything that seeps out of my brain. CMT related or not! No one will see these thoughts unless I want them to, and this gives me some comfort. In person I may trip over my words, not be able to come up with the answers right away, and the more people looking at me and waiting for my responses the more nervous I get. Even running the CPO gallery (to raise money for research) is a huge step for me. Not only is some of my artwork hanging on the walls to be looked at--there are also event nights that provide more opportunity to raise awareness of CMT...and when eyes are looking my way, the nerves kick in!
But now I'm here, fingers on my laptop keys and the delete button within reach. So what to discuss? I always worry that I'm repeating myself, though since this is awareness month and someone new may find their way to this post, I'm giving myself a little leeway. In November our local CMT support group is meeting to discuss ways in which to deal with loss, as that can be a big part of having this disease...so I've decided to talk about what that means in my life. I've mentioned in past posts about having to retire from teaching in 2004, and most recently having to retire permanently from working part time as a receptionist. If there's a paying job out there that will not hurt me, or exhaust me beyond the point of cognitive thought, I haven't found it. And these types of losses can be devastating; including a loss of financial security which is frightening...paired with a loss of identity. I admit that maybe I could have been better prepared...but I wasn't. This is a degenerative disease, though despite that, I never expected I'd be where I am today. If I'm not a special education teacher, what am I? And once that hurdle had been sufficiently crossed, another one came my way...if I'm not a receptionist, what AM I?? Each occasion included my doctor(s) saying "You just can't do it anymore, Christine," and involved a lot of crying on my part, and a lot of nose blowing (also on my part.) But I got through it...and I'm trying to maneuver on this new path, exploring the opportunities that are coming my way with my writing, and my painting. There is still a part of me that wishes for a knock at my door, with an offer to PAY me for all of this writing and painting I am doing...but I'm not going to stop moving forward until that knock comes. I'm just going to keep moving!
And why do I think I should have been better prepared for all of this? I'm not sure, really. It's not like there's a CMT for Dummies instruction manual, or anything. There's no guidebook to tell you all the obstacles you'll face, or what losses you'll suffer...because all CMT-ers are not the same. There are so many types and variations--even two people with the same type of CMT won't deal with the changes of this disease at the same time, or to the same degree. And the losses you may face include the physical ones, such as loss of muscle and function. Mine started at age 13, and progressed from there. And years sometimes passed in between one loss and the next, with no indication of when another big change might come. How are you supposed to prepare for something like that? You aren't...you just deal with each loss as it comes, adjust how you do things and adapt as best you can. It's what happens in life, whether or not you even have a disease...you just keep moving, because that's what you need to do.
I called this post 'Losses and Gains' for a reason, though...because there are gains to having a disease like this one. And though it may sometimes be hard to see them, they do exist. It gives you empathy for others and their suffering...it makes you look beyond your own difficulties to the people around you, to see they have hardships of their own. It forces you to slow down, and in doing so you get to experience the world in a whole new way...you gain an awareness of life you may not have had before. It makes you thankful of what you do have, of friend and family support, and of small gains and accomplishments. And most of all, it makes you strong. I don't mean a physical strength, but an inner strength that gets you through the difficult times, and shows you the way. As tired as I get and as frustrated as I often feel from things I can't control, I'll be forever thankful for what I have gained from this life of mine. For those things are now a part of me.
And so I'll keep sharing, writing and painting, as long as I am able...and when opportunities to step outside my comfort zone come my way, I'll do my best to put the nerves aside and share some more. I have to do this for myself, and for others who live with CMT...and I do this with my fellow CMT bloggers, for which I am thankful daily: Melinda, Melissa, Lenka, Nic, Michele...and even more--I discover new ones every day! Together, we'll be shining some light on this misunderstood disease, so that a little awareness can grow!