Names Do Hurt

I missed something important on March 7th that I wanted to mention before the month is over; an observance day that is so important, I don't believe it should be limited to just one day.  It involves a campaign designed to make people more aware of certain words they use when addressing others...now that things have calmed down on my end, I can focus on this topic and give it the attention it deserves.

The campaign I am speaking of is called the 'Not Acceptable R-Word' and you can also see the clip posted above on youtube at:http://www.youtube.com/watch?v=T549VoLca_Q  The 'R' word this campaign is referring to is the word 'Retard' which is often used as a bad name, and has been spoken with negative connotations for years.  Now I admit; words in general tend to impress me as a writer...just a slight change of phrase or an omission of one simple word can change the entire meaning of a sentence in many ways.  Though what continues to amaze me is how our society often ignores the true meaning of words by using them in derogatory ways, in order to insult each other and hurt one another's feelings.  In fact, SO much time is spent trying to invent new ways to insult each other, it often makes me want to crawl under the covers and stay there!  My point is if you actually looked up the definition of the word retard in the dictionary, you would find the following definitions:  To cause to move or proceed slowly; delay or impede...A slowing down or hindering of progress.  It is a word originally created to describe a mental and/or cognitive delay...it was not created to imply that someone is dumb, or worthless, or less of a person.  However, this is how many people in our society use this word, which does NOT impress me...not in the slightest.  Using this word as an insult to others is a HUGE insult to people who live with these types of delays, because it implies that they are somehow worthless, and dumb.  When quite frankly, I think it's the opposite.  Because these people know better than to use the R-word against others...they know how much it hurts. 

I'm disturbed these days by what passes for news in this country, when headlines are wasted on one actress's latest stint in rehab, the verbal arguments of another's divorce or the "Proof" of a famous star's plastic surgery.  Does it all really matter??  We are wasting so much of our time concerning ourselves with the UNimportant...and in the process many of us have become callous and self absorbed.  In turn, words are being used inappropriately, with the useless purpose of insulting a group of people who's daily struggles ARE important.  If everyone had to live a week in someone else's shoes, they might just learn what it's like to face that person's struggles...and I think this holds true for everything.  If more people understood what it was like to live with a drug addiction, they might not be so quick to absorb the gossip of someone else's struggle with one--it just wouldn't be as exciting.  If more people attempted to heal from extensive plastic surgery, they might not be in such a hurry to discuss the surgery of others.  And if more of us could understand what it was like to face life with mental and cognitive delays, perhaps the derogatory insult of 'Retard' would no longer hold any weight.

If you've read my blog in the past, you'll know that I live with delays of my own...which was one of the reasons I started this blog in the first place.  I wanted to raise awareness of what it's like to live with such physical delays--the frustrations you face, the things you do to adapt, even the goals you set for yourself.  I am no stranger to name calling...I've been called names that would make your nose hairs curl; I still face such discrimination and hurtfulness to this day, and assume it will continue as long as I dwell on this earth.  Because one thing you can count on is when someone happens to be different, there will be someone else who sees this as a negative.  I'm not sure if this is because they cannot understand the differences and are therefore afraid of them, and they choose to face this fear with anger and hate...or if it represents their own self esteem issues which they deal with by verbally knocking others down.  It's probably a little of both...all I know is that understanding the reasons behind someone else's negative behavior might explain things to a point, but it doesn't necessarily make the names hurt any less.  If you are one of the lucky ones and persevere, you learn to hold your head up even higher when you hear them.

And if you do hear the R-word directed towards another, don't laugh...it's just not funny.  Lead by example, please, and rise above this immaturity...instead, try to think of whose feelings are being hurt in the process.  And if you have spoken this word as an insult, then take a moment...and think about what the word truly means, and what it means to you.  Most of all, think about what it might mean to others who hear you speak it.  I think the best way our society can eradicate all the insults, the negativity and the hate, is to take a second look at the force behind the words we use...and to make a point of speaking kindly whenever possible.  Maybe when the kindness grows larger, there just won't be anymore room for the rest of it.  And that would be amazing!

Kind words can be short and easy to speak, but their echoes are endless.
                                                                                          Mother Theresa

After Accomplishment Comes Rest

The past few weeks have been a blur of activity, as I attempted to finish six paintings, line up artists and volunteers for our new ADC gallery installation at the CPO (149 S. Lake Ave, Albany) and achieve world peace.  Okay...I'm only kidding on that last one, but wouldn't that have been awesome??  I would have fit world peace on my list had I known how to accomplish it, but I'm still working on that!  Oh, and in that time St. Patrick's Day came, along with our most recent CMT support group meeting, which was extremely informative.  So, needless to say there has been A LOT going on!

I've felt neglectful of this blog as the weeks went by, and I did attempt to write a post here or there...but unfortunately I just didn't have the resources left within me.  One thing I've learned in having CMT, is that your energy only stretches so far before something snaps...so I had to set some priorities for myself, and put certain activities on hold.  But now that the paintings are done, the gallery is installed and my head didn't explode in the process, I figured it was time to fill you in on what has kept me so busy!

First of all, let me tell you more about the CPO gallery, which raises money for CMT research...a very worthy cause!  Yesterday we installed our new gallery called 'Pieces of Me', which meant weeks of contacting artists to be in the new show, a lot of paperwork to sign in new pieces of art, and disassembling last year's gallery 'Starry Night' in order to hang new artwork in its place.  As you can imagine, I'm exhausted.  I'm actually typing this post from bed as sitting up in a chair right now is not an option (thank goodness for laptops...isn't technology great?)  And as I have always liked a challenge, I decided to paint butterflies in both my paintings to represent all of the change I have been experiencing.  Wonderfully symbolic, I'm sure you'll agree,  yet something a little less detailed might have made the past few weeks easier!  Ah, well...like I said, I like a challenge.  And since my first painting Breaking Free from Life's Chrysalis came out so well (seen above in its finished state,) I decided to paint my second and much LARGER painting with seven butterflies.  Yes, I said seven.  And as I struggled to finish that one on time, I started wondering if I didn't need therapy...but I digress!  I did like the end result despite how long it took to finish, and I titled it The Gathering. 

Though nothing could have been accomplished in the end without the help of my wonderful friends and volunteers (you know who you are!) who stuck it out all day, and helped 'Pieces of Me' become a reality...it went better than I could have ever expected!  We have some new and wonderful artwork to enjoy, and even more wonderful is that we already sold our first piece of art.  That means we have started the ball rolling once again, and raised our first amount of money for the CMTA!  If that doesn't tell me that all of these changes I have gone through were meant to be, I don't know what does.  To all of you who helped yesterday and to all of the artists who joined our gallery, thank you again!

And after all my butterflies were painted, I wanted to complete four small paintings for the Broadway Art Center's new gallery, which was installed today (corner of Broadway and Maiden.)  That meant on top of all the last minute details to prepare for the CPO installation, I still had to concentrate on painting...but I'm glad I did!  The BAC is such a great space...many talented local artists show their work there, and I am very proud to be a part of all that.  And so I painted some more...and as this gallery is called 'Honoring our Heritage' I let my Irish roots lead the way.  The two paintings shown on the left are titled Love and Friendship Reign Forever, and Eternity.  The paintings at the end of this post are titled  Forever One, and A Reason to Dance.  I think it's fitting that I began my first Irish painting on St. Patrick's Day.

Which brings me back to the other important happening, which was the CMT support group meeting.  I have to say, it was one of the best ones we've had!  Group leader M outdid herself this time, and lined up some great guest speakers:  Laurie Lasky, District Manager from Allard USA (a bracing company,) and Orthotists David Misener from CPO and Ken Cornell from Cornell Prosthetics/Orthotics.  Ken gave a great presentation involving different types of CMT and their symptoms, and the bracing options that exist today to help people with CMT succeed.  Not only that, but group members were given opportunities to try on new types of braces, ask questions and share experiences.  Ken gave me things to look for in the future, when I take the next steps to finding out what type of CMT I actually have.  Now I feel a little more confident in moving forward!

But for now I am resting, because rest is what's needed.  Though as tired and sore as I am, I wouldn't have changed the past few weeks for anything...as they involved all important milestones along my new path, leading the way toward new and exciting goals.  It's always good to work toward our goals, even if we need to lay down from time to time...for that is what gives us the strength and the courage to accomplish each one!

The Struggle of Change

There are days when I am thankful for the struggles I've been given, because I know they have helped to shape me into the person I am today.  And there are other days when I would like to do nothing more than rip this CMT right out of me, stomp it flat and chuck it out the window...and then fly to an island and hide so it can never find me again! 

Now, I know that's a silly thought to even waste my time having, but sometimes I just can't help it.  Another dream I often have is that Johnny Depp will walk into my apartment one day and say "Put down that scrub brush, Christine...let ME do your dishes.  I'm here to take care of you!"  Don't worry...I'm under no illusions that Johnny will give up acting anytime soon in order to do my chores, nor do I expect to be living in an island paradise tomorrow, free and clear of struggle.  But it's nice and sometimes necessary to let the mind wander...if nothing else, it lightens the mood!  And who knows what the future brings??  Within the next few years there may be a medication that stops CMT in its tracks...someday there may even be a CURE.  And Johnny may soon get the uncontrollable urge to vacuum my carpets.  C'mon...it could happen!!

Why am I even having these silly thoughts?  Well, I am still in the process of trying to qualify for extra assistance now that I can no longer work...still caught up in the long, drawn out--jumping through hoops of fire--tightrope walking--wrestling alligators to the ground, process.  It's extremely frustrating, and I know from experience that it's far from over.  I've been told in the past that it's complicated and frustrating on purpose, in the hopes that I (or others like me) will give up...though possibly the 'Powers That Be' should have gotten to know me better, before making that assumption.  I may be tired and my energy may be limited, but I've never been one to give up without a fight.  I have to keep fighting, and breathing, and moving forward.  When I explore the alternatives, what choice do I have?

As you know, I've been concentrating on my painting and trying to find my way on this new path that has opened up to me...and as I came home, angry and tired from everything, I looked at my easel.  You see, I had started my latest painting last night--the vision of the final product already finished in my head.  And even before I saw the painting, I heard the title.  That's always how my ideas come to me; I get a title in my head, and when I ask myself how I would paint such a thing, the vision comes...and even though some are foggier than others, this one was clear as day.  It involves a butterfly, which represents the achievement of positive change through struggle...and it's called Breaking Free from Life's Chrysalis.  I think I needed to come home and see it, and be reminded of what is possible. 

Will I keep getting frustrated?  I'm almost positive...there are some feelings you just can't stop.  And I'll work through them, gripping my paint brushes a little tighter to my chest...and when that doesn't work, I'll take a breath, pop in a DVD and watch Edward Scissorhands.  When you're faced with struggle and fighting to make changes, you do whatever you have to do to find your way.  So as I take stock of things and breathe a little easier, I share with you this work in progress.  May it show you what is possible in your own life, and remind you to never give up...especially in times of struggle.

Retired but Busy

Many people have asked me to describe my life since I officially retired a couple of weeks ago, and I think I'm still developing an accurate response.  Most of my first week was spent staring at the inside of my eyelids, as I caught up on lost sleep and attempted to recover some of my energy.  During my waking moments, I've struggled with remembering what day it is as I try to get used to my new schedule, or lack thereof.  On the positive side I have managed to gain some energy back, and what I've gathered has been spent on painting...which I must admit, is awesome!  It is amazing to have the opportunity to create something solely for the joy of it, without an underlying purpose of teaching a lesson to a classroom of students...or finishing a Christmas present for a friend or family member.  Don't get me wrong; both of those outlets of creativity can be important and satisfying.  Though the chance to be creative just for myself is very refreshing!  And the opportunity to hang my pieces in art galleries has given me a whole new experience to enjoy, and a reason to get up in the morning.

When I began my retirement I admit...it felt awkward.  There was this overwhelming sense of being on vacation (one where I slept a lot) that would soon end...and when the alarm went off, my working life would once again start anew.  It took a while to get past that feeling, and there are still moments where I grab my alarm clock to set it for work.  My biggest fear when this began was that I would do nothing more than sit in my apartment, bored and lonely, with nothing to fill my time.  Luckily I have not encountered those feelings yet, and have kept myself busy with painting...and attending the many art events that have come up; some which include my work--and some that don't.  I've made it a point to go to all of them, even for a short while.  In the meantime, I still get the opportunity to see the people I worked with these past five years, when I go to the office for weekly chiropractic adjustments.  That is a blessing, because those people mean a lot to me!

Most of all, my friend M (CMT group support leader,) has helped me through this adjustment.  She went through the whole process of having to retire for health reasons, and knows the frustrations that can come with it...she, along with all my other friends and family, have helped me see the bright side of this experience and the good to come.  For that, I am very grateful!  There are still moments where the worries about my future rear their ugly heads, and I am still searching to find what other financial assistance I may qualify for (there's been no luck so far in that department.)  But I am determined to continue moving forward, and to see this through; I owe it to myself to do so.  I may not be able to change the world but I can work on making my own little part of it as beautiful as possible, and that starts with my own healing.  When the big financial picture gets too overwhelming and the fears start to creep in again, I just have to take a step back and focus on the little things I can handle.  I recently painted this piece called 'Through the Forest, To the Trees' to remind myself of those little details...and after I stop to look at them I can continue moving forward, one detail at a time.  

Discovering Truth

All truths are easy to understand once they are discovered; the point is to discover them.  Galileo

                                                                                                                      

I talk a lot about positive energy, keeping a good outlook and attitude...smiling in the face of stress.  And I really do try my best to live this way--I'm not just blowing smoke up someone's skirts.  I work hard to remember what is truly important, for I believe that when you take these blessings for granted, they tend to be taken away.

Though I admit there are days when it is HARD.  I was taught to stand on my own two feet, and to remain strong when things get tougher.  I have that ingrained in me, as any true Irishman (or Irishwoman) does.  But circumstances beyond my control force me all too often to change when I don't want to.  I am forced to adapt, and to accept.  My body didn't get the Irish memo, obviously!  The truth of the matter is that part of me would love nothing better than to make every change needed, to make things physically easier for myself, and to improve my health as much as possible.  For I know what needs to be done...even when my instinct is to stand and fight against the changes.  Though often the part of me that wishes for change is too quiet...and my loud, stubborn side takes over.

I have recently been faced with a difficult decision; one I had been fighting against tooth and nail.  The decision to stop working part time, and go on 'permanent disability'.  Wait...aren't you permanently disabled? some might ask.  Well, yes...and no.  I have a neurological disorder (CMT) that is a permanent fixture in my life, but because I have chosen to work part time, in the eyes of the law I'm only considered temporarily disabled...go figure!  Don't forget--many (many) years ago, I worked full time as a special education teacher...and ended up suffering a pretty severe back injury.  I don't know if it's the same for all CMTers, but I don't bounce back very well from those types of things...there was no bouncing at all really--more like a SPLAT.  And so it took me two years to recover, after which my doctor gave me the go ahead to work a light duty, part time job.  I could have gone on permanent disability at that point, but instead I snatched up that opportunity to work in any capacity, quicker than Dr V could blink...and before she could change her mind.  Since then I have been working as a part time receptionist in medical offices; the last few years for my chiropractor.  It wasn't what I was trained for, though it was what I needed...I needed to be busy.  I don't regret my decision (well, not totally.)  Had I thought of pursuing my artwork at that time, I might be in a different place physically, but that's okay.  I didn't, because I had spent so many years in the mindset of 'teacher' that my job had become my identity...it had become my truth.  So when that ended, I think I was suffering from a lot more than back pain.  I was suffering an identity crisis, and I needed time to find my way.

So recently, because of further changes in my health, I was faced with the decision to stop working completely.  And in a way, I was faced with a whole new identity crisis.  Not that I feel the same kind of attachment to my receptionist persona, because I don't...I think it was the identity of 'the working woman' I was afraid of losing.  And it still petrifies me, though I finally came to the decision that I had to make the change.  My doctor has suggested it, my chiropractor has suggested it--my friends and family have all agreed.  And so do I, deep down...though it is not a choice that has come lightly.  I think the turning point was having the opportunity to work with Art de Cure, and opportunities to paint and create again...it gave me a path to explore, when it felt like all other paths were being closed off.

Most importantly, I discovered my real truth.  My identity was never any job; my identity is the type of person I am inside...and my creativity is a big part of that.  I have the opportunity to focus on that part of me now and explore all it has to offer, and I also have the opportunity to do what is right for my health, before another SPLAT happens.  I can choose to look at this negatively, as something I am being forced to do, or look at this as a positive change that I am choosing to make for myself.  I know the path in front of me is not guaranteed, nor is it set in stone.  If my past experiences have taught me nothing else, they have taught me that.  And though this path will take me to the unknown, it is one I need to follow, to see where it may lead.  It has taken a lot of time, and there is still much fear involved, though I am choosing to be positive...and that makes the pill of change a little easier to swallow.

Happy Holidays!

Ahhh, it's that time of year again!  Family and friends, presents wrapped in paper and topped with bows...crazy drivers, checkout lines stretching to the door, and stressed out last minute shoppers.  As with anything, it all depends on how you look at it!  I do my best each year to avoid the crazy drivers and packed stores by starting my Christmas shopping in June...yes, JUNE.  That may be neurotic, but it allows me to calmly welcome the holidays with a smile on my face.  Well, I try anyway!  I actually bought my last gift two days ago, so I couldn't avoid the stress completely.  Hmmm...maybe I should start in March.

Though however it happens, all of the stress is worth it when a present I have chosen (or made,) makes someone I love smile.  It's worth it to watch my youngest niece rip apart that snowman paper with abandon, and pull a giant teddy bear into a big hug!  Or to see my older niece model a brand new sweater or a piece of jewelry, which reminds me once again how beautiful she is.  Both of my nieces are beautiful, inside and out--and seeing them on my favorite holiday and watching how they've grown year after year, is worth the long shopping lines!

Now, I realize in my heart that this holiday is not about the presents...it's about the smiles.  It's about those opportunities to see how my nieces have grown, and to hear my family laugh when we discuss past holiday memories.  Like my father's Christmas outfit when I was a child; a green turtleneck and red bell bottom pants (sorry, dad--at least I didn't post it!)  Or the shiny silver tree with the multi-colored light box that rotated, so the color of our tree was forever changing...Hey, cool!  Our tree is red--oh, wait.  It's gree...hold on a minute.  Is that a BLUE tree??   Ah yes, the 70s!  Those were weird times full of strange fashion and lots of shininess!  And now I'll forever have those memories to enjoy with my family.  The stories of past times are truly the most important, and I know if I weren't able to come to Christmas celebrations with any presents, I would still be wanted...I also know that this year has been more difficult for me due to financial issues.  I can only imagine what many others out there face, when attempting to get their loved ones presents in this failing economy.  Can I change that?  Not really.  All I can do is stay calm and keep that smile on my face...and hopefully if someone else is dealing with their own holiday stresses and money struggles, I'm the one who holds the door for them, and sends them through with a smile.  Maybe, if I'm lucky, my small gesture helps them just a little!

Well, as I still have presents to wrap and kitties to pull off the tree (they're trying to climb it again...) I must dash!  Though before I go, I wish all of my readers a happy and healthy holiday whatever you may celebrate...and when our new year comes, may you all look back and remember the laughter and smiles on the faces of your family and friends.  May you surpass all of your stress and financial burdens, and start some holiday memories of your own to enjoy for years to come!

Starry Night Success!

This has been an interesting couple of weeks...mixed with ups and downs, and a fair amount of stress!  But I am happy to report that our Starry Night/Art de Cure event to raise funds for the Charcot Marie Tooth Association was a huge success!  I am still awaiting the final total, though I know we raised at least $8000 for the CMTA's STAR Research program.  And it was wonderful to see all the familiar faces of family and friends who came out on Friday to support our cause, including my niece who was generous enough with her time to help serve hors d'oeuvres (along with many other wonderful volunteers.)  Thank you, everyone! I'd especially like to thank our CMT group leader M, for all her hard work to make this event successful!

Another boost to my positive energy was the fact that I sold both of my paintings during our event...one of them purchased by a good friend of mine!  Not only does a portion of that money help a cause near and dear to my heart, but it also gives me the prompting I need to KEEP PAINTING!  I feel (and hope) that this represents a new path that has opened up for me, and it couldn't come at a better time.  This life of mine has suffered its bumps and bruises, and my path has hit its share of potholes.  After coming down from the Starry Night high, I tripped and fell into one of those holes.  The kind that teaches you it's time to make some changes, in order to get to the other side.  I'm still working on climbing out of it (I'll let you know when I get there.)

The change?  Well, let's just say I decided to be proactive this time around, and I asked the question I was too afraid to voice when I was a teacher..."Is doing this job hurting me?"  When I taught special education, I knew deep down that I couldn't physically do my job anymore.  It was becoming more and more difficult, and I didn't work with the type of people I do now...despite repeated requests for more assistance, I was denied the basic necessities I needed to do my job.  It was hurting me, and instead of giving me more help within the classroom, all I was given was more students.  Could I have left?  Yes, though it would mean quitting and giving up my income...and it would mean leaving my students as well.  I chose to stay mostly for them, though deep down I knew what I was risking...and I did pay for it.  It took me two years to physically recover from that, enough to work part time.  And that pothole was a BIG ONE!

So where am I now?  Well, I'm in a similar place...I know I need to make changes, which includes cutting my part time hours even more.  I know I'm struggling.  The difference?  I'm attempting to make those changes, before that moment comes.  You know that moment; when you fall in the pothole and attempt to climb out the other side, only to get squashed back down by a Greyhound bus.  If you're lucky you only end up with road rash on your face and tire tracks on your backside...if you're unlucky, the bus is followed by a tractor trailer.  I am trying to do what I need to do now before I get squashed, and the reasonable side of my brain knows it's the right thing to do.  The other side is discouraged, and frustrated with the fact that I have reached another plateau I have to cross...even though I don't particularly want to cross it and the other side seems so far away.  But this is where my path is leading me.  And I am lucky to work with people now who understand that, accept me for it, and are willing to help me get to the other side.  Despite the changes, for that I am fortunate.

And who knows?  Maybe I can stop along the way, take in the view, and paint.  And once I reach the other side there may be a pile of canvases and an endless supply of acrylics waiting for me...and a new source of income I never imagined.  Nothing is impossible...I never would have gotten this far, otherwise!  And now that my first two paintings have sold in the Art de Cure gallery, there are two more for sale hanging in their place.  If you were unable to join us on Friday, December 2nd, stop by the CPO building (149 South Lake Ave, Albany) and take a look!  The gallery remains open until February, and there's still an opportunity to help the CMTA...and the chance to view some beautiful artwork by many regional artists.  Meanwhile, I think this looks like a good spot to sit.  I wonder what I will create next?