Monday, December 31, 2012

Hopes for 2013

This year has been one hell of a roller coaster ride, I must say!  A lot of things that I was unprepared for happened, making me take stock of things.  It seems silly to even say that I was not ready for so many changes, at least the ones that had to do with my CMT...such as having to permanently retire because of its progression.  You would think I had become an expert, ready for all the twists and turns this disease leads you through.  But I'm not an expert, as much as I'd like to think I am.  In a lot of ways, I'm like a person who finally passed the 'height requirement' for this ride, only to find out that drinking a 16oz grape-flavored Big Gulp before I got on, was a REALLY BAD IDEA.

But those unexpected changes have led to others, and in an effort to find myself again I have found the keys to doors I thought were locked...or at least, the doors were too heavy to open.  I was able to tap into the creative side of myself that had become dampened over the last few years, focusing on artwork and writing in a way I had never done before...in the past, it was always too easy to put those things aside, because of other priorities.  Now all of sudden I had all the time in the world to pursue these creative new paths.  Sounds great, right?  Almost novel-worthy...I just wish it had happened that smoothly.

I pride myself on my honesty, however, especially on this blog...and it didn't happen smoothly.  The new path is rocky and a lot of it is still dark, so I'm doing my best to navigate...and part of me still wishes for the old me who seemed more independent, if only because that 'me' could collect a weekly paycheck.  That roller coaster I mentioned?  It's a doozy!  There were a lot of tears and emotions I had in the beginning; mostly fear.  The tears have pretty much subsided (for the most part,) though the fear is still there...it kind of lives in the back of my brain, lurking there in my subconscious.  Every so often it makes itself heard and makes me hold my breath while it whispers to me...what does my future hold?  What will happen if my health...really, you get my point.  But I will never get complete answers to those questions, so the best I can do is have faith that everything happens for a reason.  And then I grip my paint brushes tighter, and turn the whispers off.

Along with my own roller coaster experience, there have been things happening in the world around me that are also out of my control.  Some of these things have been bitter sweet, such as my oldest niece making the decision to become a Marine...she left for boot camp before Christmas, and my worries for her safety mix with my tremendous pride in her bravery.  I have no doubt that she will succeed and go far in her future endeavors, and as much as I'd like to tie her to a chair until she decides to become an accountant, I can't do that...again, I just have to have faith.  Outside of my own family and my own worries however, are the tragedies going on in our own country...the turns and loops on this ride growing ever more dangerous, the tears flowing harder than before.  Again I know I need to have faith that everything happens for a reason...want that faith desperately, in fact.  Though I find myself having to reach further for it now...I have been shaken on this ride.  And so I have painted...and painted...and painted some more, because the ride is not stopping anytime soon.  It is life after all, though there are many days I just wish it would slow down and smooth out.  I haven't known what else to do but paint, hoping it would help me find that faith again...find the answers I'm searching for.  The painting below is the first one that came about because of my searching, though I can't say I have any more answers now than I did when I started creating it.  It is called When Angels Weep.

My hopes for 2013?  There are many, of course.  I hope I find answers about my future that are more concrete than wisps of cotton candy.  I hope I find healing for this disease that is surprising and unexpected, and manage to raise CMT to a new level of awareness than ever before, in the meantime.  Those hopes are a given and will always be there, and I would be lying if I said that the recent troubles in the world have made them disappear altogether...though they have dulled as of late, and have joined the fears that whisper in my ear when I least expect it.  My hopes for America seem somehow more out of my reach than the hopes for myself...that things start to make some sense again.  That the answers which are needed for our country to find healing are found, and the decisions for peace are made.  I hope...I hope...I hope.

My latest painting was born out of that hope, I suppose, in an effort to create life in a world that remains so tenuous.  It's a 'tree of life' painting, called Life Grows On.  I created it because I wanted to put something peaceful out into the world; something growing.  I am also hoping that doing this will help to remind me of the positive experiences of 2012, and that my faith is soon caught tight in my grasp once again.  I wish you all the same...and a Happy, healthy New Year full of laughter, life and love.  May 2013 be a wonderful year for all of us!


Happy New Year!

Thursday, December 27, 2012

Memories That Make You Smile

This has been a very strange year, I have to say.  Lots of changes, some good and some bad...and the recent tragedies that put everything into perspective.  It reminded me of what is most important, and taught me what to never take for granted.  Most of all, it has given me an almost uncontrollable urge to find laughter and happiness wherever I can, because those moments will help me get through all the rest...or so I continue to hope.

This isn't really a Holiday post.  I haven't actually celebrated Christmas yet with my family, due to some family illnesses...nothing major, though enough to postpone the holiday celebrations.  Normally that would be driving me CRAZY, not because I am desperate for presents, but because I truly love to give presents to other people, and see if I can make them smile.  But after the way this year has gone, especially recently, I'm not really worrying about it...the celebrations will happen eventually.  And the snow finally hit last night, giving us another reason to postpone things.  Though today's snow is nothing compared to storms of the past, and the ones that are still to come.  I live in Upstate NY...bad weather is a given in this part of the country, unfortunately.  If I were more adventurous, I'd learn how to ski or snowboard, if only to get some enjoyment out of it...though because of the CMT and balance issues, somehow strapping sticks of wood to my feet and hurtling myself down a mountain, doesn't seem like a very good idea.  Go figure!  So instead I stay inside as much as I can during winter, only venturing out to clean off my car when needed.  I've already done that today, and may have to do it again before the day is over.  In the meantime I was reminded of a funny story...and since I'm searching for ways to make myself laugh and hoping I can provide that for others, I'm going to share it.  I may have already posted this story before, so if I have please bear with me.

As it's something I live with daily, I often talk about ways to help myself adapt to life.  I've shared tools that I use to complete everyday tasks, because of limited function in my hands...which is often a reality when you have CMT.  As I have lost more hand function over the years (and I live in an area where snow, ice and cold is also a reality,) I've learned what activities are the hardest.  Using keys successfully is at the top of my list...and even though I once bought an adaptive tool to help me turn keys, a lot of them didn't fit, so the tool ended up in a drawer.   Getting into my home is hard enough, but the most difficult is opening my car.  My Honda is 11 years old, and the key doesn't turn as smoothly as it should...add 10 inches of snow, ice and freezing cold to that list, and opening my car is like trying to break into the Pentagon with a Q-Tip.  MacGyver could probably do it, though I'm no MacGyver!  And when my hands are frozen solid, what little function I have left is useless to me.  So a couple of years ago I asked my parents...no, BEGGED is more accurate...for a remote car starter/door unlock-er, eliminating my need to open it with a key.  That was my birthday present, and it's probably the most useful gift I've ever received. 

The funny story I mentioned is what led me to beg for that item.  A winter or two ago the weather was especially heinous, making key usage all the more difficult.  On one particularly cold day, I stood at the driver's side door, desperately trying to get my car unlocked using both hands to turn the key...but the lock just wasn't budging.  I had already spent the morning dropping things and getting frustrated, because once my hands reach a certain level of cold, nothing but a hot bath will warm them up...but I had an appointment, and no time for baths.  After about five minutes of trying to get my car open (or five lifetimes, I'm not sure which,) I just snapped!  I started screaming at my car as if it were a living thing, right in the middle of the parking lot...yelling obscenities only a drunken sailor would use (I'll spare you the actual words.)  My rant continued, and I even punched the car a few times.  I couldn't help it--I was PISSED.  As I drew breath to continue my raving, I heard a pleasant voice say "Hi Christine," which stopped me dead in my tracks.  Oh, crap...I thought, and slowly turned my head.  Standing there was the office manager of the complex I live in...a very nice woman, who surprisingly still likes me.  Next to her stood a prospective new tenant who had come to check out the apartment directly across from mine, unfortunately for him.  With a look of pure horror etched upon his face and his mouth hanging open, he stared at me with fear...somehow I doubt he had any desire to move in!  The level of embarrassment and blushing that burned my face at that point, could probably have melted my car into a giant puddle...making the need to unlock it nonexistent.  Needless to say I finally got the car open and managed to drive away, all the while trying to blend into the background and pretend I didn't exist.

I've learned the hard way that you've got to laugh at the ridiculous moments, because life will certainly throw you a lot of them.  Laughter helps you deal with the crazy times of life, and with all the other times that aren't so funny...and if you can't bring yourself to chuckle over the insane moments of your own life, watching a comedy about someone else's can certainly be helpful.  I hope at least I've made someone out there smile and laugh today...if so, my work here is done.  And I say this with complete certainty; any of you readers who have hand issues, whether they come from CMT or not--consider getting a car remote if you don't already have one...especially if you live in NY.  Trust me...you'll never regret it!

Saturday, December 15, 2012

Hold Your Loved Ones Close

Time speeds by, sometimes in a flash.  Before you know it the years have passed; the children you've held in your arms are cradling you now, in theirs...roles are reversed, and there is never enough time.  Never, EVER enough time.

This was going to be a post about hate.  This was going to be words about people who so clearly needed help but didn't receive it in time; and the backlash of confusion and destruction that was the outcome.  Though how can I put my feelings into the right words and have them matter...can I ever say enough to make that happen?  My blog is mostly about living with the types of struggles I face on a daily basis, because that is what I know.  That is my reality, no matter how often I wish it weren't.  I can't face this unknown reality...it makes no sense to me; like mismatched puzzle pieces that build nothing in the end.  When I say I cannot imagine the torment the families of the recent victims in Newtown, Connecticut are experiencing, I really mean that...I CAN'T IMAGINE IT.  I'm sure the families felt the same way just a short time ago, when their loved ones were still safe and they could hold them in their arms.  I know that is a reality they would gladly embrace again, if only given the chance.

Stories like this one bring tears to my eyes, and a pain to my heart.  I believe it is important to remain positive, pay it forward and put as much love out into the world as you can...it is the only way we can ever hope to counteract such violence and hate!  And then something so tremendous, so DEVASTATING happens, and the path grows dark again.  We shake our heads, we shed our tears and pray...and hopefully hold our loved ones closer and give thanks that they are still here.  We appreciate who we have in our lives all the more, realizing how precious and how short life can truly be.  And tomorrow a new day starts, and we do our best to move forward.

I don't know if there is something I am missing...if there is something I should be doing that I am not, to make the negativity in the world grow smaller.  I know I feel inadequate right now, and always do during such times.  As I said before...this was going to be a post about hate.  Though in all honesty, I can't go down that path.  It is just too dark to navigate, with huge potholes I can't even begin to crawl out of, or hope to avoid.  The most I can pray for is that the light will grow brighter...for the shadows to recede, the monsters to fall back, and for things to make sense again.  I can hope that when the light of day is at its brightest, we remember what happened...and we take measures to keep the light shining, so that this type of negativity no longer holds power.  And I can love.  With abandon, with honesty, and with my whole heart...so that everyone who is important in my life is held just a little closer, and loved just a little more.  Each and every day.

A lot of my Facebook friends have been posting prayers and words of sympathy, to keep the light shining...to help those dark shadows recede.  I am sharing this one in particular, because it resonated with me the most.  My prayers go out to all the families in Newtown who have suffered and lost during this most recent tragedy...may they make their way through this darkness, and find some peace.  And may we all see that time grows ever shorter, and hold our loved ones close while we can. 



Sunday, December 9, 2012

Amazing Results!!

The math is done, the tally is in...the Starry Night event is over!  It was a huge success, more so than I ever expected.  As stressful as this whole process has been, things have also been falling into place--volunteers agreed to help and joined our committee, food and items were donated, friends and family came out to support us...each little step leading up to one wonderful, successful night!

The result?  It's staggering!  Before the main event happened we were given a grant by CMTA's board member Elizabeth Ouellette, as part of her 'Birthday Wish'...whatever funds we raised would be doubled for the CMTA.  We had high hopes, and weren't disappointed!  We had eight sales of artwork and lots of sales of beautiful donations, and at the end of the night we raised $11,064.00!  Can you believe it?

And so for the past couple of days I've been tying up loose ends, matching receipts and adding the final total...and decompressing at the same time!  I am thankful to have been a part of such a great cause, and I am very thankful it is finally over...for now I feel I can get some much needed rest.  Three of the paintings sold were pieces I had created, which is a great feeling!  My piece, Star Light, Star Bright, is shown below.  Though what is even greater was witnessing all the volunteers, Art de Cure members, CPO office staff, and event guests showing their support and helping us to reach our goal.  Again I say a big THANK YOU to everyone who helped us raise so much money for the CMTA!



So with that final Adieu, I'm signing off for now...with a big yawn, and a happy heart.  I wish everyone a starry, starry night!

ADDENDUM:  Late donation of $25...brings us up to $11,089.  Every dollar counts; every ounce of support matters!  The time is now to END CMT...and we're well on our way!

  

Tuesday, November 20, 2012

Starry Night Update: What I am Thankful For!

As Thanksgiving is soon upon us, I thought it required a post about what I am thankful for...and there is a lot!  However, there is something else on the train tracks which is bearing down on me, and taking a lot of my focus...our upcoming December 7th Starry Night event, at the CPO gallery (Clinical Prosthetics & Orthotics building--149 South Lake Avenue, Albany NY.)   I have been busy collecting donations, meeting with volunteers, finishing last minute paperwork...and basically trying hard not to lose my mind!

So today I took a moment to breathe, and the thought popped into my mind: What am I thankful for?  Well, what I am always most thankful for are the friends and family in my life.  I have been blessed with people who truly care about me, and they show me everyday.  I have so many people who have been willing to help a cause that is near and dear to my heart; raising awareness of CMT, and funds for the CMTA's STAR Research Program.  And as I prepare for Starry Night, I can truly see just how much my friends and family care...through their generosity, and their actions.  I have been collecting items for months, and still have others coming that I couldn't photograph in time for this post.  Not only that, but other friends and family members have donated their time and efforts to install the CPO gallery and make it a success...and still others will be donating food and refreshments for the Starry Night event, not to mention their time in helping it run smoothly!

Baby Bundles (Blanket and Bib) by Carol Hook
I wanted to share some of the beautiful items I have collected, that will be part of our event...I did my best with the photographs, though believe me--these items are more spectacular in person!  And as I gathered everything together to take these pictures, I started thinking about why these donations are so special to me.  You see, I live with CMT everyday...and it is often difficult to see beyond the disability, and focus on other things in my life.  And during those difficult moments I feel like I live, eat and breathe CMT.  That's not the way I want it, believe me...though at times it's hard not to feel like I'm stuck in something that is unfortunately a big part of my life.  And part of me worries that when I am stuck, I may become annoying to those around me...that they may think Oh, no...she's TALKING about it again!

Batik Quilt by Kelli Clemens
 And if some of my friends and family thought those things, I actually would understand.  Sometimes I get annoyed at myself when it seems like I can't have a thought run through my head, without having 'CMT' attached to it.  That's a struggle I'm currently dealing with, as I attempt to find other things outside of myself, and this disease.  And I will get there.  In the meantime, no matter what people in my life may think when I start discussing my CMT, all of these beautiful items proved something to me; they love me and care about me, and want me to be happy and healthy...those thoughts trump all the other ones.  And when I asked for donations, they didn't even hesitate to share their time and their talents with me...they know this cause is near and dear to my heart, and that's all that matters.  Now, how could anyone look at such generosity and not be thankful?      

100% Cotton Baby Sweaters/Hats by Christine Fontaine 

Now keep in mind as you are looking at these photos...this is only a small highlight of what will be featured at the Starry Night event.  I am not the only person who has been collecting donations!  There are many other items for sale, not to mention all of the wonderful artwork by local artists.  There will be a silent auction and also a raffle, for the chance to win four Disney "hopper" tickets for a day (which means you can "hop" from park to park and are not just limited to one.)  And all money raised at Starry Night will benefit the CMTA, and will help to find a medical treatment/cure for CMT.  What could be better than that?


Scarf and Earrings by Susan Rivers
There are other things I am thankful for, as I prepare for this event.  For one, the opportunity to do a fundraiser for an important cause such as this...if it weren't for the people at CPO opening their doors to the Art de Cure organization, I wouldn't have the chance to help the CMTA in the first place.  Now as we move closer to finding that cure, I can feel like I had a part in that!  Most of all, I am thankful for my co-coordinator, Melinda Lang.  She shares my stress in making this event a success, and all the work that is involved in making it happen.




Jewelry by Al Davis
All of this has shown me something...I am very fortunate to have a lot of support in my life.  That is important for anyone to have, though I think it is even more important for someone who lives with a disability, and/or a chronic illness.  When you do, you can reach very low points in your life...sometimes it can seem as if no one else shares your struggles, or understands your pain.  Over the past few years I have found great support through the CMT support group and on-line community...I wasn't always aware, though, that I already had a great support system within my own family, and among my own friends.  Preparing for Starry Night has helped to remind me of that, which is always a good thing!


Jewelry by Kate Tumbleson
If you are looking through these photos and know that you can't join us on December 7th, don't despair!  Raffle tickets for the Disney prize have already gone on sale ($25 each,) and if you are the winner, we will contact you after the event.  And you can always leave me a comment if one of these items catches your eye and you are interested in purchasing it, but can't join us for Starry Night.  Want to help more?  We also have a link you can click on to donate to the STAR program...before and after the event.  There are many ways to show your support!  That link is: 




Gift Certificates for Massage, Acupuncture
and Facial Acupuncture:
Christine Zido, LMT
Lorinda Hilmar-Kimball, LMT
Cassandra Dugan, LAc
Debra Singer, LAc
www.cmtausa.org/index.php?option=com_jdonation&view=donation&Itemid=132

For Disney tickets:
https://www.cmtausa.org/index.php?option=com_jdonation&view=donation&Itemid=152

Fuzzy Scarves by Nancy Clarkson











Finally, let me say thank you to Dave and Elizabeth Misener, for opening your office to us, and allowing us in...as stressful as it can be at times, together we are truly making a difference!   Thank you, M&T bank, for sponsoring us and supporting our cause.  And last but certainly not least, let me thank all of the volunteers who will be helping to make our Starry Night event a huge success: Jackie Watsky from Art de Cure, Joanne Van Genderen, Donna and Rich Piche, Nicole Alonzo, Jessica Cameron, and Miranda Rand.  Without all of you, we wouldn't be able to pull this off!   And if you are still planning on donating an item, don't worry...I'm still collecting.  Even if I couldn't post a photo of your item, your generosity and support is much appreciated!  This year has certainly involved a lot of changes for me, and they were not always welcome ones. ..though the harder changes have often lead me down better paths I never expected to travel.  And in the end I have managed to learn something very important...I truly have a lot to be thankful for!  Have a wonderful holiday, everyone!





   


Thursday, November 15, 2012

The Need to Laugh!

I have something to confess...I am a planner and a list maker, sometimes to the point of madness!  I make lists of what I need at a store like most people, though I go beyond that and map out where those items are...and then I go even further, and re-do my list so that my errand running is broken up into sections, starting from one end of the store and finishing at the other.  Then and only then, my shopping trip can become as quick and painless as possible.  This is only attainable, of course, when a store is familiar to me--if I've never been there before, my first shopping trip is often very tiring...luckily I can quickly memorize a store's layout, so any future visits there will be much easier!  Obviously if I work this hard to make shopping a 'painless' activity, I'm not a "window shopper"...and even if I had all the money in the world, I doubt shopping would ever be all that fun for me.  Okay...it might be a little more fun if I could just shop for things I wanted, rather than necessities, though I'd probably still map out my list before I left the house!

Maybe you're reading this and thinking I do that too...no big deal.  (One can only hope!)  Or maybe you're thinking Ooohh, this girl's stranger than I thought! and really, I can understand that response.  I actually do think it's a little strange to go through all this trouble just to run an errand, but it's the reality I live in.  There are always other factors in my life I have to consider; like the amount of time spent walking around, what I can and cannot lift--whether or not I have help when I need the heavy items (like cat litter,) if there are places I can sit down if I need to...they are all just a part of my existence, and when I do push them aside for the sake of being spontaneous, it usually involves some sort of payment on my part.  And payment can involve pain...which to me is very expensive!  So in an attempt to keep my payments low, I plan...and plan...and PLAN.  And I become too much of a control freak over the activities of my life, unfortunately.

The planning is understandable, even if it's not something you are used to.  And I am thankful for the fact that I can be this organized...I think this ability has helped me a lot throughout my life; when I was a teacher and now as a writer.  But in the same respect there are things about it that bother me.  That word I used a moment ago--Spontaneous--springs to mind.  I want spontaneity in my life...there are times when I am so bored with the lists and the planning, I even crave it!  But I think in an attempt to control as much of my life as possible (when there is SO much that is out of my control,) I have moved far away from spontaneity, and I can't even see it anymore.  I wonder how I can get that back, without somehow hurting myself in the process?  I wonder if my brain will even allow it in my life anymore?   It seems when any new activity presents itself, before I can just "run with it" something pushes the 'planning' button in my brain, and off I go.  I have lists of what to do and what NOT to do, where to go and where NOT to go, and how to accomplish this "spontaneous" activity with as minimal discomfort and trouble as possible...and these lists are created in my head before I can even grab some paper.  Being able to paint and be creative has definitely helped me get some spontaneity back, though sometimes it feels like when I set the brushes down I am back in list mode, whether or not I want to be there.

I think it also makes the things which crop up that I can't change, more difficult to deal with.  And having a degenerative disability like CMT means that things are going to crop up, sooner or later...cause that's the name of the game!  And no list, no matter how organized, is going to change that.  I do my best with these situations, adapt where I can and try to accept it when I can't...and I continue to search for healing wherever I can find it.  And sometimes I do find healing...and sometimes I don't, and my search continues.  Yesterday I was fortunate to have lunch with my good friend (and fellow blogger) Melinda, and one of the things we talked about is sometimes feeling like we just live in our CMT...it's there when we wake up in the morning, and there when we go to sleep.  This disability has robbed us of many things, and I realized yesterday that our spontaneity is one of the things we've lost.  Maybe not completely, but in a thousand tiny little ways that often add up to a rigidness we don't really want.  Seriously...it's like an unwanted, crabby house guest that won't go away!

That being said, I also experienced something else yesterday...I got to relax and 'let loose', and just LAUGH!  That's probably one of the most spontaneous activities you can do, I think...that deep, come-from-the-belly kind of laughter that bursts from your lips before you can stop it.  It's not only spontaneous, it's very healing!  And Melinda really got me laughing hard yesterday, which is something I needed...and I truly thank her for that.  The good thing is, I haven't lost my ability to laugh...and there are never any lists involved!  So I will continue to face my CMT demon, and hold on strong to that ability...for I am determined never to lose it.  Ultimately, laughter will continue to heal me, and keep me standing strong!

Friday, November 2, 2012

Reflections On the Year

Another birthday is on the rise...YAY!!  Yes, on Sunday I will be 41 and fabulous, and able to celebrate!  As I started looking forward to this occasion, I also turned back to reflect on this past year...which has been full of changes, some good and some not-so-good.  I was dealt the blow of early retirement due to my CMT, and forced to find a new path.  In my search I rediscovered my artistic side, and have been able to use my talents to raise money for the CMTA, which has been awesome!  That, along with this blog, earned me the CMTA's 'I Am A Star' award, which was a tremendous honor...and even though my recent blow of negative blood test results (to determine what type of CMT I have) were upsetting to me, I have worked hard to continue moving forward. That is often how life happens, full of ups and downs...and yet I am determined not to focus solely on the bad things, which tend to scream longer and louder in order to grab my attention.  The good things that happen to us in life often lie quietly until they are remembered at random moments, and sometimes we manage to forget about them altogether.  They deserve the spotlight...and they deserve recognition.  Remembering the good memories is what keeps the smile on my face, after all!

As writing is my way of thinking things through and exploring new avenues, I decided to try a writing exercise I read about on a 'Neurolmuscular Diseases' site called Bella Online.  This site provides all sorts of information about living with ND's, though I never expected to find an exercise that would get my creative juices flowing!  This certainly isn't limited to one type of writing, and is just another tool that opens your mind and expands your imagination.  The exercise prompts you to choose a word and circle it, and from that word write any other words you can think of, drawing a connecting line to each one...without stopping to think about why.  One word leads to the next and some branch off on their own, leaving you with the makings of a short story, or even a poem.  Pretty straight forward, though where it leads you may be surprising.  And so I grabbed a little piece of paper and wrote my first word, 'Birthday'...a word I actually didn't use in my final piece, because it didn't seem to fit.   This is what my word graph looked like at the beginning:
 
 And from these words, I created this poem about growth and change, and the passing of milestones.  The poem came out a lot more serious than I was intending, though like I said; where this exercise leads you may be surprising!
 
Moving Forward 
With every year, every milestone passes.
Moving forward, ever forward...
I see each new day as a gift.
 
I embrace each new year as it comes;
Embrace it completely...
With abandon, with hope, and with faith.
 
For as the clock of age ticks by,
Wisdom also grows...the wisdom of life,
The wisdom of experience.
 
Lessons learned, and lessons earned.
I wear each lesson as a badge...
Badges of honor adorn my chest.
 
I'm proud of these badges!
And proud of the scars I got for earning them.
They have molded me; they have shaped me. 
 
As I grow older my scars grow...
The physical ones stretch and change;
The emotional ones become more flexible.
 
I do not hold tightly to my younger self...
I embrace my future, and welcome change.
For change brings opportunity.
 
Opportunity brings new life,
New life brings healing...
And healing brings wholeness!
 
With every year, every milestone passes.
Moving forward, ever forward.
 
And I see each new day as a gift!
 
 
 
As always, in writing this I was reminded why my birthday is so important to me...it's a way of marking time, reviewing my experiences, and remembering the obstacles I've conquered! So as that milestone comes I will remember the good times during this past year, such as the many artistic opportunities that have come to me...I will remember how I've become a part of the CMT community, and have been able to give back in so many ways.  The other memories are still there, of course...though I will try and remember what I've gained because of them, as my way of dealing with the changes.  And I will celebrate in style, while I eat gluten free pizza...YUMMY!  Have a great weekend, everybody! 


Saturday, October 20, 2012

It's Hip to be Square

No, I'm not going to entertain you with the 'Huey Lewis And The News' song, although I always did like their music...that title just came to me as I was driving home today.  This has been an up and down month as far as feelings go.  Good things accompanied by the not-so-good.  I've been busy preparing for our 'Starry Night' event on December 7th, to raise money for the CMTA's STAR research program, and collecting donations from friends and family...which is wonderful!  I have a great support system, and it's times like this where it really shows!  Though the event preparations also create stress, which tends to rear its ugly head in the form of back pain and headaches...you know, fun stuff like that!

And right after I had written my post I Vote for the Ups about all of the great things that happened in September, I received some bad news...the very next day.  The Neurologist called and told me the results of my blood test--that no, I do NOT have type 2A.  Which means I'm back at square one, trying to find out what type I do have while figuring out how to pay for future blood tests that I can't afford...and knowing that in the next few years when the CMTA finally comes up with a medication that will stop the progression of type 1A and 2A, it won't help me.  I will continue to be as patient as possible while my search progresses, and one of my CMT-blogger friends gave me some ideas on how to proceed from here, which was a big help.  But I'll admit...I am very disappointed!  I really wanted a 'Yes' on this one...not to mention the fact that in a life where I often feel like everything is out of my control, I just wanted to have the mystery solved on this ONE THING.  So that I no longer felt like I was sitting in the dark and couldn't find a light switch.

On top of all of that I've been trying to finish all of my Christmas Presents, because I'm anal retentive about such things...and I like to be finished well before the holidays actually begin.  So armed with a 60% off coupon that was only good for today, I travelled to Jo-Ann Fabric and Craft Store to get the next item on my list.  As I finally reached my destination, I saw the crowds of people and tons of cars searching for parking spots...uh-oh, I thought to myself, wondering if this was such a good idea.  I'm not good in crowds, mostly because of my balance issues...people in general move too fast for me, and the more people there are the more chance of getting A. Knocked over, or B. Stepped on, or C. BOTH.  But I had come this far and had a pretty decent coupon, so I decided to grin and bear it.  I made my way into the store, and then my worries grew...the check out line was not building up my confidence about this whole adventure, as it stretched almost to the doors.  Did I mention why I'm not good in crowds??  Better add another reason to that list: D. Long lines.  I can't stand still for very long, even if I have something to lean on...everything tenses up, especially my back, in order to keep myself steady and balanced, and on my feet.  And when you place tension on an already taxed muscle, the end results aren't very pretty.  But that 60% off coupon forced me to keep going, in the hopes that maybe...just maybe, the line to check out might soon be shorter.

All I really needed was one type of fabric, which I found in a matter of seconds...and then I turned the corner and saw the numerous lines to get material cut, and it was like Armageddon!  Snakes of people wound in different directions from the fabric counter, numbers clutched in their sweaty hands, waiting their turn.  For me at that moment, it was pretty much over...there was no way I could ever manage to wait that long on my feet, like everyone else.  Disappointed, I put my fabric away and left the store.  Driving home I began to think about today's occurrence, and the number of similar moments that came before it.  I realized that there's never been a time in my life where I didn't feel like a square peg, trying to fit into a round hole.  When I was a child, it was as if people were attempting to pound me into this round hole, and I just wouldn't quite fit to their standards...though I didn't know why.  It wasn't for lack of trying on my part...I just didn't fit.  Now I know why, and even though it's not really important to me that I don't match up to other people's expectations, sometimes at the end of the day I'm still left feeling...bruised.  And sometimes I just want to join everyone else without repercussions, but I don't...because I know what the bruises feel like.

I don't mean for this post to sound depressing...as always, there are upsides to everything.  Being 'Square' has made me creative and artistic, sensitive and understanding...I've become the individual I am today because I don't fit into normal standards.  When you view the world from a different angle, it changes your perspectives, often for the better.   If I'm being perfectly honest, sometimes I get very tired of the bruises life can cause...and even though I know there's an upside to it all, sometimes I just want to be round.  But I am grateful for the perspective I've gained from over here, and the life lessons it has taught me.  It pays to be different, sometimes in the smallest of ways.  In other words, it's 'Hip to be Square'!  

 
 

 

Thursday, October 4, 2012

CMT Interview on Blog: Living Well with CMT

I've truly enjoyed this past awareness month for a lot of reasons.  I've met even more people from around the country who also live with CMT, found some new blogs to enjoy...and now I have been interviewed on Melinda's blog: Living Well with CMT (Charcot Marie Tooth) Disorder.   Check it out...you're only one little click away from a great blog, and a great interview!

Thanks for having me as your guest, Melinda :-)

Living Well with CMT

Sunday, September 30, 2012

I Vote for the Ups...

This is our last day of CMT Awareness Month.  Does that mean the last day for awareness of this disease?  I certainly hope not!  It needs to continue to grow, and grow, and GROW.  The light needs to shine on its existence.  So in the future, people with CMT will be diagnosed in a timely fashion, rather than searching for answers for many years.  So in the future, when I see a new medical professional and tell them I have CMT, I don't have to hear "What's that?" or "Is that a problem with your teeth?"  So in the future, everyone will just KNOW.  That is one of many dreams I have...I hope I'm around to see it happen.

In the meantime, I'm focusing on the Ups.  What are they?  The Ups are those moments that make you smile, make you blush sometimes...the moments that make you happy.  Those other moments are still there, intertwined with the Ups like tangled string...and sometimes you can't get the knots out.  Those are the Downs...and they happen, sometimes bringing you to your knees.  With CMT, I've seen many Downs, some of them the knee rocking kind.  I hate those moments. There's no blushing involved...just frustration, tears and sometimes pure anger!  I'm sure everyone has experienced their own Downs at some point in time, whether they have CMT or not...though I've learned that when you do have it, you appreciate the Ups all the more.

This month I'm happy to say has involved many Ups...and not a lot of Downs, at least not the major ones.  I won the 'I'm a STAR' award (YAY!) and just found out that I also won awards for my paintings that were featured in Artist's World Magazine...Best Use of Color, Best Abstract, and Best in Mixed Media.  Triple YAY!  This is one of those happy, blushing moments.  And I got to share it with my fellow CMT artists, Melinda (Best Photo--Surrealism) and Lenka (Best Photo--Realism.)  Congratulations, girls!  I hope we all have more of these happy experiences in our futures!

Cause quite frankly, I like it here.  I like the Ups...I want to have more of them.  I know those other moments will appear in my future, though when I couldn't say...like I mentioned in my last post, there's no guidebook.  And that's life I guess...the most complicated, difficult and wonderful journey, with no map.  Even though you have some control over the paths you follow, mostly you just have to wing it.  Though if I get a choice, I vote for the Ups...cause they make those other moments easier to bear.  With them, you get through the tangled forest, and see the trees...and each positive, tiny little detail shines through!

Saturday, September 22, 2012

Losses and Gains

I have been trying to think of another aspect of Charcot Marie Tooth disease that I could talk about, while awareness month still exists and I am prompted to get the information out there.  I confess I have gotten distracted as of late, and one thing that took my attention away from another post (and gave me a huge SHOCK) was that I won the National CMTA's "I am a STAR" award.  My parents nominated me for this award, for everything I have attempted to do to raise awareness and funds for research, and I am very thankful to them for doing so.  I am also deeply honored that the CMTA chose me!  And did I mention shocked??

I guess the shock comes from being such a private person...I'm not used to the attention being on me in any way, and though I'm very forth coming with information when people ask me for it, I prefer outlets like this blog to share my story.  Here in the quiet of my home, I can spell check...take my time...edit my thoughts...and delete complete sentences about virtually anything that seeps out of my brain.  CMT related or not!  No one will see these thoughts unless I want them to, and this gives me some comfort.  In person I may trip over my words, not be able to come up with the answers right away, and the more people looking at me and waiting for my responses the more nervous I get.  Even running the CPO gallery (to raise money for research) is a huge step for me.  Not only is some of my artwork hanging on the walls to be looked at--there are also event nights that provide more opportunity to raise awareness of CMT...and when eyes are looking my way, the nerves kick in! 

But now I'm here, fingers on my laptop keys and the delete button within reach.  So what to discuss?  I always worry that I'm repeating myself, though since this is awareness month and someone new may find their way to this post, I'm giving myself a little leeway.  In November our local CMT support group is meeting to discuss ways in which to deal with loss, as that can be a big part of having this disease...so I've decided to talk about what that means in my life.  I've mentioned in past posts about having to retire from teaching in 2004, and most recently having to retire permanently from working part time as a receptionist.  If there's a paying job out there that will not hurt me, or exhaust me beyond the point of cognitive thought, I haven't found it.  And these types of losses can be devastating; including a loss of financial security which is frightening...paired with a loss of identity.  I admit that maybe I could have been better prepared...but I wasn't.  This is a degenerative disease, though despite that, I never expected I'd be where I am today.  If I'm not a special education teacher, what am I?  And once that hurdle had been sufficiently crossed, another one came my way...if I'm not a receptionist, what AM I??  Each occasion included my doctor(s) saying "You just can't do it anymore, Christine," and involved a lot of crying on my part, and a lot of nose blowing (also on my part.)  But I got through it...and I'm trying to maneuver on this new path, exploring the opportunities that are coming my way with my writing, and my painting.  There is still a part of me that wishes for a knock at my door, with an offer to PAY me for all of this writing and painting I am doing...but I'm not going to stop moving forward until that knock comes.  I'm just going to keep moving!

And why do I think I should have been better prepared for all of this?  I'm not sure, really.  It's not like there's a CMT for Dummies instruction manual, or anything.  There's no guidebook to tell you all the obstacles you'll face, or what losses you'll suffer...because all CMT-ers are not the same.  There are so many types and variations--even two people with the same type of CMT won't deal with the changes of this disease at the same time, or to the same degree.  And the losses you may face include the physical ones, such as loss of muscle and function.  Mine started at age 13, and progressed from there.  And years sometimes passed in between one loss and the next, with no indication of when another big change might come.  How are you supposed to prepare for something like that?  You aren't...you just deal with each loss as it comes, adjust how you do things and adapt as best you can.  It's what happens in life, whether or not you even have a disease...you just keep moving, because that's what you need to do.

I called this post 'Losses and Gains' for a reason, though...because there are gains to having a disease like this one.  And though it may sometimes be hard to see them, they do exist.  It gives you empathy for others and their suffering...it makes you look beyond your own difficulties to the people around you, to see they have hardships of their own.  It forces you to slow down, and in doing so you get to experience the world in a whole new way...you gain an awareness of life you may not have had before. It makes you thankful of what you do have, of friend and family support, and of small gains and accomplishments. And most of all, it makes you strong.  I don't mean a physical strength, but an inner strength that gets you through the difficult times, and shows you the way.  As tired as I get and as frustrated as I often feel from things I can't control, I'll be forever thankful for what I have gained from this life of mine.  For those things are now a part of me.

And so I'll keep sharing, writing and painting, as long as I am able...and when opportunities to step outside my comfort zone come my way, I'll do my best to put the nerves aside and share some more.  I have to do this for myself, and for others who live with CMT...and I do this with my fellow CMT bloggers, for which I am thankful daily:  MelindaMelissa, Lenka, NicMichele...and even more--I discover new ones every day!  Together, we'll be shining some light on this misunderstood disease, so that a little awareness can grow!

Friday, September 14, 2012

Can You Do Tricks?

I have been keeping up with my new-found CMT-bloggers, and recently two of them posted about 'tricks' they have created, from having to live life with CMT.  That doesn't mean pulling rabbits out of hats, or sawing someone in half...it means all the little adaptations they have developed over the years to complete tasks, get through the day, and survive with this disease.  Their posts have inspired me to take a good long look at my own daily routines and tricks so I could best explain them to others, and raise more awareness for this disease.

So what are mine?  It was easiest for me to look at these tricks in groups, related to the body parts they've been developed to assist.  Because of my CMT my legs/feet and arms/hands have been compromised, so there are tools I have acquired over the years to help me be successful...but actually the first 'body part' I thought of was my back.  I am not sure if I would say my back has been the most compromised by CMT, though it seems to dictate my life with the firmest of hands and unyielding opinions on how I should live.  Because of weakness in my trunk, my muscles are not strong enough to hold my bones in place, which have a habit of turning and twisting in the most uncomfortable and disgusting ways...it's probably what frustrates me more than anything else I deal with on a daily basis.  I rarely have 'pain free' days, though some are certainly better than others!  And any injury I have suffered in the past has been back related...I went through year after year of re-occurrences of a severe injury I suffered in 2003, causing me to live in bed for 2-3 weeks at a time in order to recover.  Thanks to continued pool therapy and regularly scheduled Chiropractic treatments, I have managed to get to a point of stability...though it often seems as if this point is delicately balanced on the edge of a cliff.  As long as I do the following things, I don't fall off the cliff, and I can keep going: 1. Always have a seat cushion with you wherever you go, no matter what, even if you look silly carrying it around.  You'll be happy in the end, and your back-end will be happier!  2. Spread errands out, so you have breaks in between to sit down, or lay down (I didn't listen to that one today...I've already had to take one muscle relaxer, and lay on ice packs because of it.)  3. Always know what the seating arrangements will be for restaurants, friend's houses, libraries (etc.) that you may want to go to--are there chairs available with flat, straight seats and backs?  Will the place be too crowded, and all the chairs taken?  Will there be nothing but benches and lawn chairs?  (I don't go to those places.  No outdoor concerts or bonfires for this girl!!)  4.  Leave enough time in each day to lay down.  A lot.  (That's the one I probably dislike the most.)  There are days where it seems like all I do is stay at home, taking turns sitting down and laying in bed...anyone else who is forced to do this on a regular basis, knows that it gets old, FAST.  Here's a picture of my lovely royal blue seat cushion, which despite it's bright color, I've managed to leave in numerous restaurants.  Luckily I've always gotten it back!





I suppose my legs/feet would be next...what I have to help them function are my Helios.  I can't wear anything heavier than socks without having those on, because I am unable to lift my feet to walk--this is because of the foot drop I have, due to the CMT.  Without the braces, my feet are very heavy, as if they are encased in cement.  I actually walk around a lot at home without the braces to give my feet a break from them, and hold onto the walls and furniture when I need to.  But in order to wear shoes, my Helios are my faithful friend, and very necessary!  I also need to follow rules when it comes to my legs: 1. When walking long distances...oh, wait.  You CAN'T walk long distances.  If there IS a lot of walking, make sure there are places to sit down along the way to rest (see rule #3 in 'back' section, as it applies to these random seats.)  Let's just say I don't go to the mall very often!  2. Make sure you time your errands to coincide with small check out lines, so there is limited standing...as standing still is hard.  Noon till about 1:30 is a pretty bad time to go to places such as the bank, because people are on their lunch break, and lines are a definite! 



That leaves my arms/hands.  There are a lot of tools I've acquired to assist me, my scissors being at the top of my list.  I have them all over the house, and they are made for people who don't have good use of their thumbs.  You see, the first noticeable symptom of my CMT was losing my thumb muscles...making my hands very weak!  Because of this weakness I've overused the muscles in my arms and upper back to compensate...and unfortunately when you overuse muscles which are atrophied to begin with, you tend to lose them even quicker.  I've adapted the way I do most things because of my lack of muscle and mobility, from locking/unlocking my front door with both hands because I can't grip or turn keys, to how I brush my teeth (also two handed.)  I have pencil grips I put on pens and pencils and art brushes to make them wider, special rocker knives and meat scissors to cut meat, but my everyday scissors are what I use most.  The way everything is packaged these days is ridiculously hard for me to open, so I cut EVERYTHING.  And if it's something I can't cut, I tend to open it with my teeth...those are very strong!  It's funny when someone asks me if Charcot Marie Tooth disease means I have something wrong with my teeth, and then I proceed to open a box in front of them by chewing it apart. :-)



I guess those are my tricks...some of them, anyway.  I really don't think about them much as I go through life, to tell you the truth.  They are just part of my day.  I don't even think about CMT when I put my braces on--I just put them on and go.  I think as we move through September, trying our hardest to raise more awareness and teach more people about this disease with the funny name, these tricks and differences become more apparent...but you'd be surprised how little us CMT-ers actually think about all the things we do to make our lives livable.  We just do them, because...well, you do what you have to do.  And I will keep doing my tricks, as long as I am able!

 

Friday, September 7, 2012

CMT Bloggers, Unite!!!

I realize my title sounds a little like a superhero cartoon (Wonder-Twin powers, ACTIVATE!) and maybe there's a reason for that...I feel a little like a superhero this week.  It's a nice feeling, especially for a person who often feels very un-superhero-ish.  Yes, I know that isn't really a word, and I am sure spell check will be quick to point that out to me.  Though anyone who faces daily physical challenges will probably understand what I mean...sometimes it's hard to feel like a superhero when you have difficulty opening simple things, lose your balance just crossing the room, and gracefully do things like walk into walls (rather than through them!) 

But I digress...mostly because I don't want to dwell on what makes me feel clumsy right now.  Instead, let me tell you why those things have managed to fade into the background.  As you will know if you read my last post CMT Awareness Month, 2012  we are pushing extra hard to raise awareness about CMT across the country...this includes helping awareness to grow within the medical community, so in the future people who have this disease can enjoy (well, maybe not enjoy...) visits with medical professionals that DON'T include having to teach them the meaning of CMT.  As you can imagine, that takes up a lot of extra time, and doesn't really leave you with a feeling of confidence in their skills.  One of the things I have been involved in recently is a contest for Artist's World Magazine, called 'Expressions Art Challenge for CMT Awareness'.  Artists with CMT, or artists who have friends with CMT were asked to submit their work for the 'Expressions' contest, for AWM's September edition...and three of my paintings were chosen.  YAY!  And even more exciting is that Artist's World will be in galleries and museums across the country, helping to further raise awareness of CMT.  Bigger YAY!!

Though even bigger than having my paintings printed in a magazine is something that has happened within the past few days.  After writing my last post, I received some comments from other CMT bloggers around the country, and was actually able to chat with one of them.  And it is always exciting to meet other people who deal with the same issues I deal with everyday, and who have taken the initiative to blog about their stories as well!  This disease has many different components to it, which can include lovely things like pain, and loss...though one of the biggest components is often this feeling of alone-ness where you feel like no one else in the world exists with CMT.  And even though you know in your heart that isn't true, when you move through your life explaining over and over again what CMT stands for (NOT just country music, people!) that feeling of being alone can grow.  I was 38 before I even met anyone else who had it...and now I feel like I am part of a community of CMT-ers, and CMT bloggers.  Maybe in this growing technological world, we can reach enough people to raise the awareness of this disease to an acceptable level...and maybe CMT-ers world wide will finally have a voice, and be heard!

 
  
So take a moment and check out the links below...I guarantee, it will be well worth the extra clicks!  You will see some exceptional CMT bloggers, and learn their stories.  And if you check out the last link to AWM, you may even notice that one of the other artists is none other than Lenka from 'Lenkaland', who is also an amazing photographer.  Maybe someday I'll actually get to meet these wonderful people in person at a CMT-blogger conference...who knows what the future holds?  In the meantime, keep reading and sharing these various blogs and help us in our 'superhero' fight to raise awareness for CMT!

My Life With CMT
Lenkaland
Clicks for CMT: Bloggers Raising Awareness
Artist's World Magazine

Tuesday, August 28, 2012

CMT Awareness Month, 2012

As September soon approaches, another CMT Awareness Month begins!  That may not mean very much to some, though in the world of a person who has Charcot Marie Tooth disease and deals with the daily struggles, it means a great deal.  These struggles can be varied, and can include muscle loss in extremities, nerve pain, numbness and tingling, loss of function of hands and feet, foot drop and difficulty walking (requiring the use of assistive devices such as leg braces,) poor circulation, trouble discerning hot and cold in extremities, difficulty keeping hands and feet warm...really, I could go on and on.  Sometimes I'm afraid I sound like a broken record, though it's hard not to mention these difficulties...as they are things I live with everyday.

Despite the length of that list, I think one of the hardest struggles to deal with when you have CMT is the lack of awareness you face within your community...though even more difficult is facing the same lack within the medical community...because that is where you expect the most awareness, where you "lay all your cards on the table" and put your trust in an individual who is supposed to know more than you do, in order to provide you with some guidance in dealing with your disease.  Though I welcome people's questions out in the world when they see that something is different about me, or notice that I wear braces, when those questions pop out of the mouth of someone with a medical background, it frustrates me.  Maybe that is unfair.  I try to tell myself it's unfair, and I still answer whatever questions I am asked, because deep down I know it is a moment to 'Raise Someone's Awareness of CMT'...and then I deal with my frustrations later. 

I am sure every disease has dealt with the 'awareness' issue at one point in time, because first it must be discovered...then that discovery needs recognition, and further research needs to be conducted so that therapies, medications and hopefully cures may be found.  It's a process of steps that need to be climbed, and it takes time.  I started thinking about other major neurological disorders out there, knowing that each one has had to climb these stairs, and wondering how high and far they had gotten.  So I started Google-ing these different diseases to find some answers.  First I looked at Multiple Sclerosis, as the symptoms can be very similar to CMT.  MS, like CMT, was first discovered in the late 19th century...and in the 1960s the disease's processes were better understood,  clinical research began, including the testing of new therapies.  In the 1980s, the MRI started being used as a way to show damage to nerve fibers, revolutionizing the diagnosis of the disease.  As of now, there are several FDA approved drug therapies that are available to assist with MS symptoms, and slow its progression.  Approximately 400,000 people in the US have MS, and more are diagnosed everyday...and probably the most important thing to remember is that most people, including those within the medical community, have heard of MS and may even know someone who has been diagnosed.  See??  A lot of steps...and a lot of time.  Then I looked at Parkinson's...another disease that most people have heard of, especially within the medical community.  No one is sure when Parkinson's was first discovered, though there is evidence that it has been treated for thousands of years around the world.  It was first formally recognized in 1817 and finally distinguished as a separate disease called 'Parkinson's' in 1861.  In the 40s and 50s surgery started to be used on the brain that was risky, though if successful, could improve symptoms...further research in the 60s led to the development of medication, and today there are several medications to improve symptoms and slow the progression of Parkinson's.  At this time, approximately 500,000 people in the US have this disease.  Again, there were many steps to be taken, and sometimes the gap in between was big, and hard to cross.  Another well known disease (by name, at least,) is Alzheimer's, which unlike the others wasn't discovered until 1906...and the gap between this discovery and when recognition began was quite large, as it was not considered a major disease until the 1970s...instead it was just considered a natural process of aging.  Since then (mostly in the 90s,) important discoveries were made and several drugs were approved to treat symptoms of Alzheimer's, and slow the progression of the disease...and there are approximately 2.4 million people in the US who suffer from Alzheimer's today.

And then I turned to CMT...because after viewing the steps and progression of these other diseases, I was eager to compare.  Like MS, it was discovered in the late 19th century--1886 to be exact, by three physicians: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth...which is where it gets it's funny name.  Over the years different therapies have been found to be helpful, such as occupational and physical therapy, and aqua therapy.  In 2008 the STAR research program was started with the goals of finding a drug treatment/cure for CMT, and we are getting very close (within a few years' time) to finding a medication that slows and/or stops the progression of this disease.  Approximately 150,000 people in the US have CMT, though that number is believed to be much higher as at this time people with this disease are often misdiagnosed.

Does anyone else see the HUGE gap there? That huge crevasse that lies between 1886 and 2008? Whereas the other neurological diseases seemed to have big pushes of interest and research going on somewhere between the 40s and 90s, our big push began in 2008...three years ago.  Am I bitter??  I really don't mean to be...I know that other people who stare their own diseases and disorders in the mirror everyday have struggled, and I know for many years they searched for a diagnosis and a name, just like I have had to do.  I am sure once the diagnoses came, many of them dealt with years of similar experiences with medical professionals...sharing their diseases only to hear questions like "What's that?"  I am also sure they were just as frustrated during those moments, as I have been in mine.  This is just my turn to be patient, to be frustrated, and to be angry all at the same time...and it's also my turn to be proactive, answer the many questions (even the frustrating ones) that come my way, and raise as much awareness as I can.  Hopefully by doing so, people who have Charcot Marie Tooth disease in the many years to come can Google 'History of CMT' and see that even more steps were surmounted.  If nothing else, information on the disease will appear right away, instead of numerous pages on the history of Country Music Television.  I'm keeping my fingers crossed on that one!

Meanwhile, I wait.  And when I tell the next person within the medical community that I have CMT (such as the nurse who drew my blood to test for type 2A) and they ask me the question "What's that...shark teeth?" I will try my best not to sigh too loudly, and answer them in a calm and pleasant manner.  I'm still crossing my fingers on that one, too.  And yes, the nurse did ask me that question...I'm not making that up.  Believe me, I'm not the only one to hear such things...my friend M wrote about similar experiences in her blog recently.  Check it out at: http://cmtnyus.wordpress.com/2012/08/23/guest-post-for-medical-mystery-funny-name-serious-disorder/.  And if you get an opportunity to pass on awareness of this disease to someone else, please do so!  And when they seem confused about the name, feel free to tell them there are no sharks, teeth or country music involved.  With your help, awareness of CMT will finally be raised to a whole new level, one little step at a time. 

Saturday, August 4, 2012

Laughter is the Best Medicine

I will soon be taking the next step in my long journey, to determine what type of CMT I have.  As I've mentioned in past posts, there are two types of this disease that are being focused on by the team of CMTA scientists, as they strive to find a treatment and cure: type 1A and 2A.  Everyday we step closer and closer to finding a medication that will stop those types of CMT from progressing.  Why are those two the main focus?  Because they are the most common types of CMT...and there are about 50 different types.  Yikes!  What a daunting thought...although just a few years ago, the scientists weren't even looking for any sort of medication.  They hadn't even become a group yet.  And even though every problem has a solution, sometimes it takes a while to find it...and your patience is tested in the meantime.

So each step needs to be taken one after the other, and often there's a lot of time that passes in between.  On Monday I'm taking the next one, and having my blood test for type 2A...I already know I don't have 1A.  One down, only one to go...hopefully!  According to my insurance company, the test will be covered...all $900 of it.  I'm hoping they stick to their word, as that seems to be a skill a lot of insurances are severely lacking these days!  And I'm praying the test shows that I have type 2A, and finally the mystery will be solved...and within a couple of years there will be a medication that stops me from getting any worse.  There is a good chance I have this type, but if it turns out that I don't it kind of puts me back at square one...each type is tested individually, with a $900 price tag attached.  And the waiting game will begin once again, as I wait as patiently as possible for the medication to be discovered for 1A and 2A, so the focus can turn in a new direction.  I have found that I can be very patient in a lot of different circumstances...though I'm not sure if this will count as one of them!

So as I sit here waiting for Monday to come (while trying desperately not to gnaw all my nails off,) I realize I need a distraction.  I have my painting to turn to, though when I take a break from creating I need to have something to fill the gap.  So I started thinking about funny stories from my past to change my focus, as laughter always does that quite nicely!  There's a lot of memories that come to mind.  One in particular occurred during a big change in my life, when I was 13 years old.  I grew up in the country across from a cornfield, with willow trees and a little creek in my back yard...people seemed few and far between in those days, my best friend at the time living a mile away.  Now my best friend (a different person,) lives about 30 seconds away!  My current world is much different than my sheltered country childhood, and when my parents decided to move the family to Guilderland, NY, we might as well have been moving to China.  Uprooting our lives was a scary prospect, though essential to shorten my parent's commute to their jobs in Albany.  I was quite shy at that age, and as I didn't drive I couldn't see the sense in our move...all I knew was the school I would be transferring to was HUGE, no one would like me, and I was positive I would never see another tree as long as I lived.

Most of that turned out to be false...the school was huge, but I met my best friend K on my very first day (the one who is now 30 seconds away.)  And we had trees in our yard--front and back, and although there were other houses across the street instead of corn, there was still enough foliage to make me happy!  Though on my last day at my old school I didn't know things would work out, and the fear of change was larger than the change itself, as it often tends to be.  I don't remember much from that day...I'm sure I barely said a word to anyone, and probably didn't learn a thing.  All I do know is how scared I was, not only of where I was going but that I was going in the middle of the school year...friends would already be paired up at the new school, and teachers would already have their routine.  I would be an interruption...and my brain just couldn't get past that.  So on that last day my morning classes came and went, and soon it was lunch time.  I stood in line with my plastic yellow tray, not paying much attention to the food that was placed on top.  Finally I was in front of the lunch lady running the cash register..."That'll be $1.17," she said to me, and I reached into my pocket.  Ooops!  I thought, as I realized my pocket was empty!

To this day I don't know where I got the courage to say it--normally a problem like that would send me into a panic!  But for some reason I didn't panic at all...maybe that was because not having the money to pay for lunch was small potatoes, compared to the changes I was facing?  I'm not really sure.  All I know was I looked her straight in the eyes and replied, "Well, this is my last day, cause my family's moving...and I have no money.  So consider it a gift!" and I grabbed my plastic tray and left the line.

Really, if I could go back in time and ask that 13 year old Christine where she found the chutzpah to say those words, I would...if I could bottle that calmness, I'd do that too.  Maybe the trick is to remember that no matter how scary things seem, the obstacles placed in front of us are usually surmountable...or maybe I just need to remember that laughter is always the best medicine, and to laugh as much as possible.   If nothing else, I probably made that lady smile, and got a free lunch in the process.  And in the end I'm left with a funny memory, to last me a lifetime!

Tuesday, July 24, 2012

New Art, New Opportunities!

A lot of new things are coming about, that I needed to share!  As my current artistic path shows itself, things continue to move along...and even if the path isn't always smooth, I am sticking to it.  This Friday we install our Starry Night gallery at the Clinical Prosthetics & Orthotics Building (CPO) at 149 South Lake Avenue in Albany NY.  We have received some very interesting and eclectic pieces of art, from Graphic Images, to Color Photomicrographs (close-up photos of dividing cells.)  Starry Night will hang from July 27--December 28, 2012, and our big winter event will be on December 7th from 5-9pm..  This event will feature a silent auction, great food and wine, live entertainment, not to mention some fantastic art by local artists...including my own two pieces called Experiencing the New (posted below,) and a new piece I recently finished called Star Light, Star Bright (posted at bottom of this entry.)  So mark your calendars, and come join us on the 7th...it should be a lot of fun, and proceeds will benefit the CMTA!



Though the next gallery installation isn't all that is happening...soon my artwork will be featured in a magazine!  Isn't that awesome?  It is true--when one door closes, another one opens...you only have to step on through it.  Experiencing the New will be one of many artworks featured in this September's issue of Artist's World Magazine, as part of their 'Expressions Art Challenge' to raise awareness for Charcot Marie Tooth disease.  The magazine will feature artists who have CMT, or have friends with CMT, as part of awareness month.  All of the pieces featured are eligible for 'The People's Choice' award, and you can vote from now until August 15th for your favorite!  Voting is as easy as commenting on someone's status on Facebook--after clicking on the AWM link below, you can view the 17 artworks that will be featured...first LIKE the page, then click on your favorite artwork and choose LIKE again for that piece.  It's that simple!  Show your support for all of the artists featured by checking out Artist's World Magazine, and passing on their link to friends and family...by doing so, you can help raise more awareness for CMT!

 https://www.facebook.com/media/set/?set=a.257953630986979.60375.128038497311827&type=3&fb_source=message

Thursday, July 5, 2012

The Courage is in my Crow's-Feet

Well, another vacation is over...and I'm kind of glad!  I figured out a few things...chiropractic care is a necessity, cats and car trips DO NOT MIX, and when you're an adult and you get picked on, it still hurts.  Though the pinprick isn't as sharp, and it doesn't bleed as much.  I guess that comes from experience...the more lessons you learn in your own life, the easier it is to deal with the ignorance of others.  Or maybe it's just the crow's-feet...the more wrinkled your skin gets, the harder it is for the insults to penetrate!

So what happened?  Well, it was nothing I haven't dealt with before...in fact, I'm kind of getting tired of waiting for the bullies to get some new material.  You see, there is a current campaign of sorts making its way through the CMT community, prompting people to show off their braces...in other words, be proud and show them off by wearing shorts.  It kind of reminded me of what I was trying to do last year, by going out in Capri's in the summer time, rather than always covering up in long pants...I admit, I didn't get very far with that personal quest.  When this recent campaign started, my faith in myself and my desperate hope for decency in others was renewed, and I decided to break out the Capri's once again.  I packed them in my suitcase and brought them with me to camp, knowing it would be hot outside, and hoping I wouldn't chicken out by putting on my usual jeans.  And I didn't!  It was close to 90 degrees for several days in a row, and I bravely donned my tan Capri's and went shopping in town.  After all, it's 2012, right?  We've come a long way, right??

Well, not so right.  Okay...maybe that's not totally true; I think it went better than it would have 25 or 30 years ago.  My mother and I went to town to get some groceries, and being the weekend before a major holiday, there were plenty of people around.  Flashbacks of High school hallways came back to me...the name calling from others, the constant staring, even getting tripped or pushed down on purpose.  I've been through all of it before, and didn't actually expect anything that dramatic...but still I was nervous.  Despite that, I was determined not to turn around and go sit in the car.  I had every right to be there, braces or no braces!  Though surprisingly, people didn't even seem to look at me--I kept waiting for the eyes to turn my way, doing that slow sweep down to my legs, and that slooooooww sweep back up.  Some people would have looks of "Freak!" on their faces, some would have looks of pity...some would just have looks of confusion.  Gripping the grocery cart tighter, I prepared myself for all of it...but the further we went into the store, the more I realized people weren't even looking my way.  As our cart piled higher with items, I began to forget what I was even wearing, or that people might "SEE" something they didn't like...I began not to even care anymore!  What a relief, right?  I've never been able to feel this calm in public before--we really have come a long way, I thought.

And then it happened...the smack in the face came, waking me up to reality a little bit.  Not everyone is as evolved as you've been led to believe, Christine!  And with nothing more than a whisper, it all came rushing back.  "Psssstt!  You gotta see this one!"  Somehow I knew, deep in my heart, that I was the "This One" this person had to see.  I looked toward the voice, and locked eyes with a check out girl who somehow thought it was her duty to point me out to her grocery-bagger friend.  I literally stared straight at her, willing myself not to look away...but did that stop her?  Was there any shame on her face whatsoever??  Not a speck of it!  I've got to give her credit for sticking to her beliefs, I guess, no matter how ignorant and misdirected they may be...she didn't even look away!  Staring straight at me as I stared back, she started directing her friend..."Look to your left...one more.  Nope--one more.  See that?"   That??  I am a PERSON, no matter how flawed my body may be...I'm not a 'THAT'.  And any delusions I might have had that the checker was pointing out the 'brave person showing off her braces to the world' were dashed, as checker and bagger alike began to stare, eyes sweeping down to my legs...the sloooww sweep upwards followed by snickers and laughter.  The word 'Freak' was quite apparent, and no code book or secret decoder ring was needed to decipher what they were thinking.  And then I started to feel it--that slow shame, that embarrassment I lived with all through childhood, as if somehow I needed to feel bad for being different...as if I should be ashamed of things that were beyond my control.  And then something else happened, waking me up even more.  A woman walking into the store passed by the checkout lines, and waved to the checker, saying "Hi!  You came back!"   The girl answered with a big, bright smile on her face, "Yep...for the summer!  Nice to see you!"   And as soon as the woman turned the corner, the girl turned to her friend and made the universal signal for 'crazy' next to her head, mouthing the word at the same time.  Both started snickering and laughing all over again, thrilled to have yet another innocent victim to insult...totally forgetting about the "Freak" with the braces, standing just a few feet away.

I'd like to report that I walked over to both girls and gave them a piece of my mind, but I didn't...in fact, I didn't even look their way as I walked out of the store.  Maybe I should have taken that step, letting them know that their behavior wasn't right...but to tell you the truth, at that point, none of it seemed worth my energy.  Seeing those girls picking on that woman told me something--this had been going on long before I walked into the picture, and would continue long after I walked away.  Somewhere along the line, that girl learned how to get attention by putting others down.  Whatever events happened (or didn't happen) in her life to make her think this was okay, did the damage...even if I complained and said my peace, I doubt it would have made a dent in her psyche.  It would only have provided her with more ammunition, and I wasn't about to give her the satisfaction.  I realized in those few moments that this has never been about me, or my physical issues, or my braces.  If I walked into that store looking like a runway model, with perfectly functioning limbs and a butt like granite, those girls would have found something to laugh at.  People like that always do.  I decided to focus on all the other people in the store who didn't even care about my braces or my clothes, or the way I walked...for there were a lot of them around, more than I've ever seen before.

None of this is over for me...it will still be a process I have to go through, digging up the courage to put myself out there, braces and all.  I am under no illusions that my moment of clarity in that store will be all that I need from now on.  Although it was only a moment, it is a tiny seed,  and it's all that is needed to make new thoughts and new bravery grow.  As for the idiots out there I'm forced to deal with?  Well, they will still be there, unfortunately...though I'm a firm believer in Karma.  I truly believe that what you put out into the universe comes back to you, and that includes negativity.  Although I would love the opportunity to be there when Karma comes knocking at that young girl's door, I know I won't be.  But like a tree falling in the woods, Karma's knock will make a noise.  It's up to her how loud it will be.

In the meantime, I will continue to put myself out there more often, because I think it's important for my own psyche and well being.  To remind myself that I am special and that I shouldn't give up, despite the actions of others, I bought myself something at the Schroon Lake Town Store.  It made me smile, and the meaning struck a chord with me, so I had to take it home.  It reminded me that I am what I am, and that is a DIVA, who just happens to wear braces.  So deal with it, world!  Cause this Diva is here to stay!