Sunday, July 24, 2011

One Step at a Time

I think my brain took a vacation, without my consent.  That is, I'd realized (since Scout's passing) that it wasn't working like usual...and I guess that's normal, though incredibly frustrating!  I even attempted to start my weekly post a few times, and after sitting in front of a blank screen for 20 minutes or so, finally gave up...the words just weren't there.  Usually stories are running through my head just waiting for my hands to touch the computer keys so they can come out, but alas...the past couple of weeks, there has only been white noise.

Things are slowly getting better, though I still have my moments...I've had to adapt to my new found confusion by leaving myself notes such as LUNCH! taped to my front door handle, to remind myself to bring a lunch to work.  Quite often I've been at a complete loss after wandering into my bedroom, because for the life of me I couldn't remember why I was there.  The worst happened just a few days ago as I was getting myself breakfast, and grabbed a bowl for my cereal.  At this point I had already fed Shay his morning meal, and he was lounging in the sun.  Before I knew it, instead of cereal I had scooped a big dollop of his cat food into the bowl instead.  (Luckily I realized what I had done before I ate any...that certainly would have been a rude awakening!)  And so it continues, one step at a time.  Shay and I are helping each other get through this change and cuddling as much as possible...and as long as I remember to open the cat food cans when it's time to eat, he's fairly happy!  

As I attempted once again to write a post for this week, I realized I did have a story to share...though with everything else going on it had taken a back seat.  More progress has been made on the CMT front, I am happy to report!  A few weeks ago I met with Beth Wright--Community Liaison for Senator Roy McDonald, to discuss this disease and ask for a resolution from the NYS Senate to have September designated as CMT Awareness month.  Though the meeting is somewhat hazy for me (most of my mind was at home with Scout,) I believe it went well...and I discovered that when you have something else you're worried about, normal fears and anxieties tend to go out the window!  Thankfully my friend and CMT group leader M was able to attend, which was very helpful...along with my father, who set up the meeting.  Together we were able to provide insight on this disease and bring to light our struggle to raise awareness.  Ms. Wright asked many questions which were wonderful, and she truly seemed interested in hearing what we had to say about CMT.  I must admit I don't remember much about what occurred, other than the fact that I was able to answer the questions asked of me...and I didn't make a fool of myself, which is always a good thing.  And M was able to share our attempts in the past to raise funds for CMT research, and the difficulties in this undertaking...after all, it can be quite a struggle to raise awareness and money for a disease that many people have never even heard of!  Charcot Marie Tooth disease is not yet recognized at the same level as other neurological diseases...and we still have a long way to go.  I'm sure anyone reading this has heard of Multiple Sclerosis, Muscular Dystrophy and Parkinson's disease, and yet many of you may not have heard the term 'CMT' before reading this and other blogs that discuss it.  One statement that M made at the meeting as she explained how difficult it can be to raise money for research, is something I will never forget.  She said "We shouldn't have to sell baked goods to raise money and awareness for CMT."  And she's right.  Thank you, M, for coming to the meeting and for saying that--it really hit home with me.  If any of my readers would like to check out another great CMT blog and learn even more about this disease, go to:   

I can imagine the many steps we will have to take to achieve the recognition we so desperately need (especially within the medical community,) so that people with CMT can be properly diagnosed and care/treatment can begin.  Sometimes that journey seems very long!  Though as the saying goes, "A journey of a thousand miles begins with a single step" Lao Tzu.  And it will never be completed without placing one foot in front of the other and taking that first step.  I guess that is true with any path you follow in life whether it involves a personal cause, a dramatic life change, and even just have to keep taking that next step, and continuing on your way.  So that is what I will keep doing, even if I have to leave myself a note from time to just keep MOVING!


  1. Christine, I am happy things are getting easier.

    You did a wonderful job answering Beth Wrights questions about CMT. She seemed very interested, and will make a great ally in our quest for CMT awareness & research funds!

    Thanks for the link to my blog. Now maybe someone else besides my mom might actually read it! Jeesh now I have to write something new.

    Melinda AKA M

  2. Your own triumps , combined with the loving help and support from your trusted friend , and family , have allowed you to see the simple ....yet understated solution to most all trials we encounter in life . No matter how down , grief stricken , or defeated we feel , God gives us that strength to take that first step , and no matter how slowly , the rest will follow !It is the faith , and strength ,to allow ourself that first step that leads us to a much higher level of acceptence , and understanding .