Sunday, April 29, 2012

Stepping Outside the Box

Is there one thing you've always wished you had the courage to do but have yet to accomplish?  A dream you take out and dust off every so often, only to put it back in storage for another day?  I have a few...some I know I'll actually manage to check off my list someday.  Others...bring me so far out of my comfort zone, it might as well be a different planet!  These dreams don't have to be outrageous to be scary.  One of my dreams is actually not that big of a deal, or at least might not seem that way to sing solo on stage.  I know there is no real risk in doing so, unless the stage is on fire!  Though all I've managed in this arena is to hide within choirs, where I can sing my little heart out without really being noticed.  I've watched my father and brother sing solo many times, for they are the ones with all the bravery...or perhaps the least amount of inhibitions.  My enormous stage fright has caused me to stay within my comfort zone for years, where I know it's safe.  Yet I just can't let go of the pops into my head every so often for me to contemplate, until I safely tuck it away again.

I was fortunate to recently meet a young man from Sweden, named Andreas, who is following his dreams...and he is truly amazing!  Andreas also has CMT, and years ago he began to search for a way to succeed in athletics despite his physical challenges.  That search led him to find the Challenged Athletes Foundation (CAF) and a newly designed bike called an ElliptiGo, which provides a low impact workout...perfect for someone with CMT.  With this bike, Andreas is stepping outside his box every day, doing things I can't even imagine...things that make my simple dream of singing seem attainable.  And thanks to my friend M (CMT support group leader,) a bunch of us had the opportunity to meet Andreas in Albany a few weeks ago, and hear his story.  Along with travelling around the world, Andreas has recently begun a bike tour across America on his ElliptiGo...with the goals of raising awareness of CMT, and trekking 6000 miles across the country.  6000 MILES...can you even imagine that??  He will be visiting areas I've only read about, making the impossible seem possible!  It was amazing to meet Andreas, who proved to me that even with CMT you can reach beyond your limits.  You can push against the sides of that box, until it collapses...and explore what lies outside.

Andreas on his ElliptiGo bike

So have I signed up for a 6 month's no longer a MYSTERY singing tour, or even gone to Karaoke night at a local bar?  Not yet...although I must admit--I kind of like that title!  Mostly, meeting Andreas made me take a look at myself and my life; it made me question those 'in the box decisions' I've been making for so long.  My future suddenly seems a little larger...filled with a lot more possibilities!  In the meantime, I'm following Andreas' blog as he treks across America...please take this opportunity and check it out at the link below, and learn more about his story.  It is well worth it!

Sunday, April 22, 2012

Regrets, I've had a Few...

Do you ever have those moments when the words roll off your tongue, and later you wish you had laryngitis?  I had one of those moments yesterday.  Truly, it was just a blip on the radar...but sometimes a blip is all you need to make you sit up and take notice!

The moment started when my father and I ran into one of my cousins, which of course is not the regret.  I would never pass up the chance to see any of my relatives...and though there are many, I often don't see them for years at a time.  Today's cousin was one of those long lost relatives, and it was a pleasure to see her!  And as conversations go, it was a normal one..."How are you?...Are you still teaching?" she asked me.  And I proceeded to explain that it has been a long time since I taught...that I recently had to retire because of my CMT...blah, blah, blah, yadda, yadda, yadda.  In other words, open mouth, insert foot HERE.  Don't get me wrong--I have no problem with anyone knowing these details.  They are true after all.  I've never had any problem with people knowing I have CMT, or what it is, or what changes I have gone through.  It's the people who DON'T ask me any questions that bother me...if what they choose to do instead is stare, or point, or laugh.

Though honestly, it wasn't always this way.  I struggled with years of embarrassment about the way I looked and walked, knowing the differences were growing more obvious everyday.  It caused me to become very anxious in a lot of situations...the more people around me who would see these differences, the more nervous I would become.  Walking through wide open spaces such as the mall (a normal teenage hangout to this day,) would seem as detrimental to my health as falling into a pit of sharp and pointy things!  I knew I would barely have any wall space to hang onto, as I made my way from store to store...and hundreds of eyes would be there to watch my slow progress.  It has been a long road, and I have left a lot of these anxieties behind.  Well...some.  Okay...I guess I should say I've learned how to deal with these anxious moments, and one thing that has helped me is having people ask me questions.  That might seem strange to some, but that's the way it is for me.  And so yesterday, after these numerous explanations flew out of my mouth, it wasn't my cousin knowing these things that I regretted.  It was the fact that I didn't say ANYTHING about my paintings that are hanging in numerous galleries...and that I happen to coordinate an Art de Cure gallery, which benefits CMT.  And I'm proud of those things.  I've worked HARD to make those things happen.  So I need to pull the woolly sock out of my mouth every so often, and get a GRIP!

Currently I am working on a children's book about CMT.  There isn't much available in this venue to teach kids about this disease and raise awareness within the classrooms.  Because children can have this disease or have friends who have it, and need to know that it doesn't have to define them.  CMT is only one part--it does not make up the whole person.  I was a child with this disease once upon a time...seems like I would have benefited from a book about this very thing, don't you think?  So my next goal for the future is to answer those "How are you and what do you do" questions with "I am an artist, and I coordinate a gallery to raise money for CMT."  And the other information can follow...because knowledge raises awareness.  And with awareness comes power...and with power comes change.  I hope to someday be part of that cycle of change for children with this disease, if for no other reason than to teach them that many things lie beyond the CMT...they only have to reach out and touch them.

Wednesday, April 18, 2012

Revisiting the Past

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 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 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  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!

Thursday, April 5, 2012

A Chili Update

And I'm not talking about Winter!  I thought I'd do an update on the youngest furry member of our household, Chili.  As in Chili Pepper, Chili Con Carne, Silly Chili...and My GOD, do you ever stop TALKING Chili.  He has a lot of nicknames!

I looked back at my original post about Chili, written after introducing him to our home.  Most of it still holds true...he is a very sweet boy, and very friendly once he gets to know you.  And once he gets past his shyness, Chili literally shakes with joy while you scratch his neck, usually followed by a 'head butt' of thanks!  And as I mentioned before, Chili does talk A LOT.  Often he says "Hello?" over and over again, while he makes his way through the apartment.  Though his most favorite thing to do is go into my bathroom once I'm in bed, yelling "No?  NO???" to the point of madness...I think he likes the echo!  What is even stranger, is I usually answer him...even though his question never ends, nor does it change.  So I ask you...which one of us needs therapy?

The one thing that did change, however, is the relationship between Chili and his older brother Shay.  I had posted that there were hisses and poofy tails at first (very normal for cats,) but that they had gotten to the point where they were ignoring each other.  Soon after I posted that (about 5 minutes after, I believe,) their relationship dramatically changed...the ignoring turned to LOVE, and blossomed into one of the deepest and sweetest relationships I've ever witnessed!  It is as if they were separated at birth, and have rediscovered each other after all this time...they spend each day grooming each other, sleeping in one another's arms, and chasing each other throughout the apartment.  Now I'M the one being ignored, until it's time to open another can!  Though really, I couldn't be happier.  It is so good to see Shay acting himself again, like a little boy with his new best friend by his side.  Here's a picture of the love I'm talking about!

Aren't they sweet?  I have hundreds any proud mom!  And as I relish any opportunity to share my photos with anyone who will spare me the time, I'll share a few with you...though I promise it will just be the highlights!  Like this next one of Shay and Chili sleeping together on the living room rug, back to back.

Or taking a moment to watch for birds...a favorite pastime of both boys!

And one of my most favorites...Shay and Chili forming a furry heart on the couch.  Don't worry...the snapping of my camera never wakes them up!

You would think I would be seething with jealousy, amidst a love like this...but I keep myself plenty busy, taking pictures of all of it.  And there's always the holidays to provide me with extra activities, such as finding special 'hats' to commemorate each one with style! (Did I mention I might need therapy??)  Anyway, I recently took the opportunity to celebrate one of my favorite holidays, St. Patrick's day...with the purchase of a special shamrock hat for the boys!  This time I wasn't successful in getting a picture of he's figured out that when mommy has a tiny hat in her hands, it's time to RUN!!  Though never fear, dear readers...I managed to get a photo of Chili, celebrating the joy of being Irish!  Okay...the truth is both boys had their backs to me and weren't paying any attention at all, so I saw my chance and TOOK IT.  As any proud and slightly insane cat mommy tends to do!  So I end this latest cat post with a photo of Chili wearing his shamrock, Irish, and in style!  That says it all, don't you think?