It is always nice to have goals in life, no matter what your abilities may be...goals keep us moving forward, and make us stand outside the box...they make us take chances that we otherwise might not take. Sometimes when changes beyond our control happen, such as the physical changes that are often part of living life with a disability, it is easy to get caught in the ruts of everyday life...and often those goals we once had fall to the side.
I struggle with this issue on a regular basis, as often pain--and even the fear of pain causes me to say "No" to activities. Though I know there are also times I speak that fateful word when it isn't necessary for me to do so, and that becomes my struggle...recognizing the things that will force me out of my box without hurting me in the process. That may seem like a small goal, but actually in my world it looms pretty large...and I'm determined to reach it! In the meantime, I have established some activities that allow me to move forward in life, such as continuing this blog...and I think it's always important to glance back on occasion as you work to move forward, in order to remember where you started. Because of this I decided to go back to when I started this adventure, and read my first few postings. And it's a good thing I did, because I discovered something funny...my second entry, entitled So What Now? was no longer posted. Luckily it was still saved, but for some reason it disappeared from view...and as one of my goals has always been to raise awareness of Charcot Marie Tooth Disease (CMT) I felt it needed to be viewable once again. It's surprising to me how many readers from foreign countries I actually have, though I guess I shouldn't be surprised...a lot of the information on CMT I have found over the years has been accessible on the Internet, and I guess the same goes for people in far away places who have this disease, or those who just want to know more about the many symptoms and details.
So to continue my goal of raising CMT awareness and providing an outlet to others who live with a disability, I am re posting So What Now?...though it kind of ties into my very first posting, Let's Talk About Grace! So in order to make the most sense, I've put the link to that entry first. If you are a new reader I hope you come away with something meaningful after reading them, and maybe you'll visit my blog again. If you are a current reader I'm sure you'll recognize that there have been many changes since I first started this blog...and hopefully you'll enjoy my visit to the past. If nothing else, there is always the chance I will raise someone else's awareness of CMT...and take one more step towards achieving my goal!
So What Now?
Written on 10/7/10
So before I talk about all the other silly, crazy and often funny things I deal with in my life (and not all of them involve having a disability,) I figured I should give you even more background on CMT. It is after all a big part of my life, and likes to rear it's ugly head at the most inopportune moments, so I need to give credit where credit is due! I mentioned in my last posting that CMT often goes undiagnosed, which can be very frustrating. When you are experiencing multiple physical symptoms such as trouble walking, tripping and falling down--not to mention difficulty with the function of your hands, it can be disheartening to see doctors and neurologists and suffer through test after test, yet never get a name for your problems. And it happens quite often to people with CMT. I didn't know for many years what was actually wrong with me, only that something WAS wrong. Once it was discovered that I had CMT it was like a weight had been lifted! I have to admit, there was about 30 seconds of shock when I first heard the name (Charcot-Marie-Tooth syndrome?? What the heck is THAT???) followed by a sense of...well, peace. That probably sounds silly...Peace? Really?? But I swear to you, that's how it felt. It isn't that I found out I had this thingy with the weird name, and low and behold there's a CURE...as of right now, there is no cure. It was just finally knowing what it was and having a name I could reference when I needed it, that felt so peaceful.
Though there are other frustrations. Okay...I have CMT. So, what now? Where are all the other people with this thing? I guess part of me expected that now it would all change...that I would walk into a room, and suddenly there would be all these people there who also had CMT and dealt with the same daily struggles I dealt with, and we could become a group. And I wouldn't be alone. But it didn't happen like that...mainly what happened is I kept living life as I had before; adjusting how I did things to improve how I functioned and dealing with things as they came. I had some changes, such as getting leg braces so there was no more tripping and falling. That was certainly an improvement! I continued to learn how to do things differently with my hands so that I would be more functional, and I found a great hand therapist who helped me to succeed. But part of me would keep looking around the next corner...where IS EVERYBODY??? I can't possibly be the only one who has this! I was finally diagnosed in 1997, though I didn't actually meet anyone else who had been diagnosed with CMT until June, 2010. So you can imagine how many years I have been feeling like I was a stranded alien who had been dumped on this planet.
I was very fortunate that a local CMT support group began in April of this year...finally I would meet someone else with the same issues! And it's been a wonderful thing--I've met so many new people that know what I've experienced, and when I say 'CMT' I don't have confused faces staring back at me...(CMT? What the heck is she TALKING about???) I highly recommend finding a support group to anyone who feels lost with a situation...whether you are living with a disability or some other form of stress. And if you cannot find one, consider starting one...and don't give up. I promise you...there is other life on this barren planet you've been living on, and they do speak your language!
So what happens next? Well, I am helping to raise awareness about CMT not only by starting this blog, but by going to meetings and sharing my experiences. September 19th--26th was recently designated as CMT awareness week across the country, and many things have been happening to raise money for research toward finding a cure. The wonderful woman who started our support group was able to get a local restaurant (TGIFriday's) to agree to host a fundraiser and donate money toward this research during awareness week, and we raised $885! The CMT association started the STAR program which is in charge of conducting this research, and the outlook is very good...we are getting closer and closer to finding that cure! If you would like to read more information on the CMTA website, log onto http://www.charcot-marie-tooth.org/. As for me? I'm still the same person I always was, though I have finally found my group...and life has gotten a little bit easier!