Wednesday, September 5, 2012

CMT Awareness month

So September is CMT awareness month. I dont really know what that means for me. My blogging gal friends are dedicating posts and submissions to spreading awareness. My CMT Facebook groups are full of pictures and posts regarding the awareness spread. And I am doing zilch. Remember I grew up not even really knowing I had anything. We barely talk about this as a family which has its good and bad sides. I'm not into standing on the rooftops and shouting 'I have a neurological disease WORLD, Just wanted to LET YOU ALL KNOW!'. Although I do have admiration for folks that can and do do that. But to be honest, its just not what September is for me.

For me September is (deep breath) Finishing summer stuff - Getting ready for fall - heading back to work - figuring out day care for kids til they start school - orientation and school beginnings for each of my children and my own students - adjusting to a new routine at work - packing away summer clothing - pulling out fall stuff - buying school supplies, clothing, and other needed items for the school year - Oh and BTW for those of you who arent Jewish and may not be in the know, September is generally 'holiday season' for us. There are three-four (depending on how you count it) big holidays including Rosh Hashana (our 2-day new year), Yom Kippur (big fast) and Sukkot / Shmini atzeret (8-9 day 'harvest' holiday). This year The first two happen in September, Sukkot starts the last night of September and goes into October. But the point is, there is a lot that needs to get done before, during and after the holiday in terms of shopping, cooking, planning, packing, driving, childcare arranagements for days the kids are off but i'm at work, etc etc etc.

So to make a long story short, this is whats been keeping me busy now. I'm somewhat overwhelmed at all the beginning stuff and I have developed some lovely corns on my feet and oh, right, my belly is expanding and i'm as tired as ever. So my contribution is opening this blog today and writing even though I'd rather just be sitting and watching a show or something.

I'm grateful to those who are raising awareness. I do think its good for the world to know and understnad what we have. I was sitting at a training where we had to raise our arms repeatedly for an exercise and just kept thinking 'I wish people would get that this is hard for me'. I'd love to believe that a cure will be found but I'm not placing major hopes on it. With all the modern day discoveries and all, dont you sometimes feel that science and medicine is way way behind on finding cures to awful illnesses? And I'm not even talking CMT, I'm talking CF, Tay Sachs, Cancer, ALS, etc. Why the heck dont wen know what do with those diseases? Why are most of them essentially just death sentances? :( It makes me so sad and sick and to be honest if there was a choice given to me if a cure could be found for CF, ALS or CMT I'd definitely pick one of the first to.

But happy CMT awareness month to all my pals. I'm so grateful I've found people who can understand me and a platform that I can share my feelings without worrying about being judged or misunderstood. Keep up all the good work for those who are spreading awareness and going on interviews and getting into newspapers and all. I hope you'll be OK that my contribution is just trying to live my normal life despite these physical challenges and sharing the little I do share when I have the time, energy and frame of mind to do so.


  1. Your post is similar to the first draft of my post. The struggle between wanting to vocalize CMT but not "step on the toes" of the more sinister diseases out there.

  2. I understand what you two mean, but I don't feel like that at all. I think awareness month is really important for us because people just have no clue what CMT is. It would be nice just not to get the blank stares when we mention it...LOL

  3. I hear both sides....but again I dont really go around telling people 'I have CMT'. So I dont get blank stares. Maybe I should, especially when I have to wait on lines or whatnot but its just not something I generally share with others.

    Thanks for the comments guys.

  4. I have been on both sides of this conversation. For years, it was a non-story in my life- background noise, so to speak. Definitely not a big deal in my world. I didn't talk to anyone.

    Then I had my crash with worsening symptoms and it feels like a much bigger deal. I tell people, like I said in my Back to School Night post, so that I don't get the curious stares when I lean on tables in the classroom or sit on tables out at recess. It also opens conversations with families who have health challenges. I have also met two people with CMT this way :)

    I think we need to do what feels right to us along the journey. I understand wanting cures for lots of diseases. I avoid comparing one journey to another. This CMT path can be really tough.

    I am making an effort on my blog, too, to show that life with any challenge is not overshadowed by that challenge. We plan family events and cook dinner and raise children. Life is much much bigger. And I hope our blogs can show that. Sending happy autumn energy your way!