Saturday, April 9, 2011

Future Goals

I am sitting on my porch in the is so nice out today (finally!) that I have opened the sliding glass doors and the screen door is in place.  Scout, my oldest, is curled upon her blanket in front of the screen, listening to the birds.  I mean, it just doesn't get any better than this...don't you agree?  Days like this make me feel a little calmer, and breathe a little easier.  All at once I shed my heavy winter skin, and it's like shedding an attitude...warmer weather and the sound of birds singing makes things feel less claustrophobic, and I just want to stretch my limbs and enjoy the sun on my face!

This past week, I've been shedding a lot more than my winter skin.  I have also taken the first steps toward facing some heavily worn fears...and working toward some goals in the process.  I have mentioned in past posts that September 19th-26th, 2010, was designated as CMT Awareness week across the country.  During that week, much money was raised for research toward finding a cure for Charcot Marie Tooth disease.  Though best of all, awareness of this condition was also raised...I know my own struggle to find a diagnosis for my symptoms was a lengthy one, and the thought that just one person in the same situation might be reached, was all the reason in the world to participate!  Though as much as I would have liked to sit at a booth for 9 hours, passing out information on CMT, I don't have the physical capabilities to do so.  So I did what I could...I hung a 'CMT Awareness Week' poster in my office, and passed out fliers to patients as I checked them out and rescheduled them for future appointments.  Some of them had little to no woman in particular was pretty belligerent, just from reading the poster..."Augh!!  I have to learn about some OTHER disease now??  It never ends!!" (I didn't give her a flier...I didn't think she deserved one!)  Many people asked about the poster and were interested in what I had to I focused on them, and didn't let the other attitudes deter me.  A week might not seem like a big deal--hardly any time at all, in fact...but it was the first time CMT was being recognized across the country, and given any sort of national attention.  EVER.  That week seemed as powerful as a year, and I was willing to do anything I could to help it succeed.

So what now?  Well, as I mentioned in my post Changes Are Coming  I have become part of a letter writing get the entire month of September designated as 'CMT Awareness Month'.  My first letter (featured in that post,) was written to Governor Andrew M. Cuomo.   There I made my first request, that he sign a proclamation to have the month designated nationally.  Now, that simple letter may not seem like much in the grand scheme of things...and writing comes easy to me, so a task like that one isn't daunting.  Even though some topics are harder for me to write about, I can sit here in the comfort of my own home--even in my pajamas, and write about anything.  No one sees me (except the cats,) and I need not worry about how I look or sound.  On Tuesday, that all changed!  I agreed to take that next step, and meet with Congressman Paul Tonko about signing his own proclamation...that took me out of my comfort zone a little.  All right, A LOT.  With my computer, I can write something and edit it until it sounds exactly like I want it to sound.  When asked a question by someone I've just met, let alone a figure in politics...well, that's a different story.  That's where the fear comes in--that whatever I say will end up sounding incompetent, and the person I'm trying to convince of my background and knowledge on any given topic will wonder why I even wasted their time.  I don't know when or where this fear began, but it's been one I've lived with for as long as I can remember.  I've done many things throughout my life to work through it, though the fear is still there, buried deep inside.

No matter what, I have to continue to fight against the discomfort, and take those risks...CMT awareness is just too important.  So I swallowed my fear and did what any good teacher would do...I PREPARED.  I knew when the meeting would be and my reason for going, so I created a portfolio on CMT with sections on the history of the disease, progress in research, and goals for the future.  At least I could give off the impression that I knew something about CMT...after all, I created this great portfolio, right??  Next I went shopping to make sure I at least looked the part of a professional woman, used to meeting with various political figures at any given time.  I would have been more comfortable in my well loved monkey pajamas, but somehow didn't think head-to-toe flannels with monkey heads and bananas all over them screamed Professional!   I studied that portfolio back and forth, and even had my friend M pretend to interview me...the first question she asked was "What is CMT?"  Should be an easy one, right?  Well, everything suddenly went blank in my head, and I got that 'deer in headlights' look on my face.  Eventually I pulled myself together and was able to answer all of M's questions...and beyond that preparation, there really wasn't anything else I could do except pray.  And so that's what I did.

The good news is I managed to keep my composure during the meeting, and luckily didn't have to answer as many questions as I expected...there was also no problem with my request for a proclamation.  The even BETTER news concerns that portfolio I created--it will be going to Washington with Congressman Paul Tonko, and the request will be made for a congressional resolution...designating September, 2011 nationally as CMT Awareness Month.  Only time will tell on that one!  As for the fear?  Well, I haven't completely shed it along with my winter attitude and attire, but it has gotten a little thinner...I'm not sure I will ever shed it completely.  But I will keep trying!  I don't have much choice, as future meetings are being set as we speak...and I will go through the same process for every one, in the hopes that each meeting gets a little easier.  The future goals of the CMTA are to raise money for continued research while raising awareness and understanding of this disease.  Those goals are also my own...and I will do whatever I can to make sure they happen!


  1. Wow - that is so great!! I am so glad that you got to meet with him. You go girl, you have a mission!!!

  2. Great post! Each and every one of yours is always good!

  3. I can't believe that lady at your office complaining about "having to learn about another disease"! What is wrong with people??
    I'm pretty disappointed that you didn't go to the meeting in your monkey pajamas. I'm just saying....
    Anyway, I am so impressed by you, that is a scary thing, having to go meet with a big important senator! I would have been scared out of my mind! That one thing I think about, especially if I'm speaking to people who aren't in the field I'm in, is that they automatically know less than me on the subject, so they're not there to tell me I'm wrong about stuff, they're just there to listen! That is so cool that your portfolio is going to Washington! What if that portfolio is the breaking point which makes CMT awareness month??? That would be amazing. Way to do your part to change the world!

  4. Nothing to be scared of Christine. He puts his monkey pj's on the same way you do, one leg at a time. Think of them like that and may that help make your fear a little skinnier. Love you!

  5. You should be very proud of yourself Christine . You have accomplished a great deal . Ever since you began this blog , you've opened up yourself to all of us , telling us many secrets and fears , and also speaking of your joys and family .
    You've choosen to become a Warrior , a champion for your cause. You've come a very long way this week , and have shown some very influentual people , that you have a passion for what you are doing , and are well prepared and willing to fight ! So your worrying was for naught ! You've proved you have what it takes to be the Warrior needed to carry this cause through to what ever limits it may put upon you . Knowing you , I know you'll do this .
    But even Warriors at times need help , or reassuring, and if that time should arise , try to think of the "Parable " spoken by Matthew - Mark - and Luke , as they spoke to the multitudes and reminded them , that even the Mustard seed , the smallest seed there is , grows to be a huge , stronge , and mighty thing indeed . So press on Warrior , press on with full knowledge that what you've planted so far , will grow ... and grow ...and grow !

  6. Great job Christine! I knew you could do it. I'm glad you didn't have to answer too many questions, but next time you won't have to worry about that again.

    That's awesome that your portfolio is on it's way to Washington. Together with the CMTA, we're making great strides towards CMT awareness.