No Boundaries!

A friend just asked me today what I would do, if I had no issues and no challenges...if I could do anything in the world, what would it be?  I really had to think hard about that one.  If I could do anything?  Absolutely anything, with nothing to physically stop me??  It's so hard to choose!  My brain is hard wired to say 'No' to things...Oh, I can't because there's too much walking...I could never be outside for that long, with my allergies...I'll pass--there's just no where to sit.  It gets tiring, and yet it's a part of me.  I know I have to respect my physical needs, because I've learned the hard way what can happen if I don't.  But...to all of a sudden have that wiped away, to no longer answer to any physical obstacles?  I realized something in that moment--the possibilities would be endless.  Though when the world is at your fingertips, where do you even start?

My answer was fairly simple, really.  I am still drawn to the woods and nature, though with my new found freedom I would be able to enjoy it like never before!  I would probably become a hiker/photographer of some sort, able to explore any and all trails, outcroppings and cliffs...snapping as many pictures as I could possibly take.  The world would become a lot larger than my beloved Schroon Lake...and what's to stop me from staying in this state, or even in this country?  I think Arizona would be next...I've always wanted to explore the pueblo houses built into the side of cliffs, by the ancient Pueblo people.  I'd be climbing up those tiny ladders and stepping inside those dwellings, able to catch a glimpse of what their lives may have been like....how did they live day to day?  Where did they sleep?  When they gazed up at the stars, what was their view of the sky??

Ireland would be next, of course.  What would stop me from walking those green hills, and setting my eyes on the breathtaking views of my ancestors?  Nothing!  No worries about uncomfortable plane seats or length of flight (okay...I would still have that whole fear of flying thing, but wait...is that gone, too?) and nothing to stop me from exploring once I got there!  From the city streets of Belfast, to the cliffs of Moher...I would shop till I dropped and walk every cobblestone path.  And again, I would aim that camera in every direction until my batteries finally gave out.
 

I can almost see these places now, as if I'm holding the photos in my hands.  Every one of them beautiful, each one a lasting memory.  And then I started thinking...if I hadn't lived with these obstacles for so long, and never had anything to stop me from enjoying every inch of the beauty around me, would I still go exploring?  Would I still appreciate the opportunities that came my way?  I certainly hope I would, though our paths in life definitely help to shape our personalities and how we view the world around us.  Perhaps if I had no physical issues and could take off at the drop of a hat, going anywhere and doing anything I wanted, I wouldn't be in such a hurry to put forth the effort.  Perhaps I would convince myself that those cliff dwellings would be there tomorrow...Ireland's not going anywhere...I can hike that trail next week.  Though what I have also learned from my past experiences is that things can CHANGE.  And sometimes things change so quickly and in such monumental ways, you barely have time to blink.

I think all of my physical issues have definitely helped to shape my appreciation for the simple pleasures in life, making me grateful for those tasks I can accomplish, and allowing me to see the beauty in what lies around me.  I also know I have a tendency to say 'No' to things too quickly, wary of the 'what ifs' that might happen...and I am working to find that balance, so that I am respecting my own needs while still allowing for that beauty to find its way in.  As I thought about writing this post today, it didn't escape my notice what holiday we are celebrating...Memorial Day.  A holiday that sometimes gets misconstrued, as we indulge in sales prices and weekend plans--and race up North with our families in cars that are packed to the brim.  It is important to enjoy those chances when they come along, spending time in the sun with friends and family...though it is also important to remember those of us who have served our country through all its many years, so that we may have those freedoms.  And most of all, to remember those of us who have fallen.  I can only imagine that having your lives changed so abruptly...coming from a country with freedoms often taken for granted, to another where people fight just to stay alive, must dramatically change your perspective.  It is my hope that we may all find this appreciation for our freedom, and for the beauty that surrounds us...so that in the future we will never let those opportunities pass us by! 

       

Just Like You!

I have been preoccupied with life this week, and all the 'fun' that often comes with it...every so often it would flit across my mind that I had a deadline, and still needed to get this week's post done!  (Truth be told, there is no deadline--though I do try to write once a week, and stay on a schedule!)  And as I lay on ice packs last night because of the back pain I was having (did I mention fun??) I was bound and determined to push on and finish this post TODAY...back pain be damned!

So I decided to share a poem I wrote, for a creative writing contest hosted by the Capital District Center for Independence, Inc. which will be held on June 16th...at the '14th Annual Celebration of Independence Luncheon'.  Submissions are to be related to living life with a disability...winners are given a ticket to the event, and their submissions will be printed and distributed to the guests.  Is there a cash prize?  Well, no...unless you count what I would pay for the lunch, which will be held at the Wolf Road Marriot.  And that's okay--I'm submitting the entry for the recognition, not for a monetary gain!  At first I wanted to enter a story where I could explain what it was like to live life with CMT, as I continue to help raise awareness of this disability.  The only problem is the piece has to be 250 words or LESS.  Do you know how hard it is for me to write a story that short??  My first post, Let's Talk About Grace would have been a perfect submission...it describes how it physically feels to have CMT, and what it's like to live with a disability that no one's ever heard of, right down to the funny name.  And then I checked the length...unfortunately it was 850 words (SHOOT!!) so I tried to figure out how I could shorten it, but it just didn't work.  I guess I love words too much, and 250 of them is just not enough!

I figured the only way this would work was to write a poem, although I'm not as strong at writing poetry as I am at creating stories.  Should it rhyme?  Do I write a Haiku??  And what aspect of being disabled to I discuss?  It's a complex topic...I could try to describe CMT, or make it broader and more universal so that any disabled person could relate.  I made a few attempts: CMT...easy as 1, 2, 3!  (okay...THAT won't work!)  Charcot Marie Tooth...do you find it uncouth?  (seriously...what would YOU rhyme with it??)  And in the end I decided to go the more universal route, and discuss a topic that any person who faces life with a disability would understand...discrimination.  Not the dark, dirty dregs of discrimination such as name calling and bullying (though I've experienced those too...) but the simple stares, raised eyebrows and people just passing me by because I'm different.  I think anyone, even people who aren't disabled, knows what that's like.  So, many hours (and ice packs) later, this is what I came up with.  I hope you can relate in some way to the feeling of being and looking 'different', and wanting others to know not to pass you by...cause there is always more inside!

Just Like You

If we pass on the street, do I look the same?

Or does my walk stand out, like an open flame?

Do I turn your head, as my beauty shines,

Or do you stare at me, as you see the signs?

What you don’t know…what you can’t see,

Is the fact that there is more to me.

The funny walk, the way I stand,

Even the difference in my hands.

All of that is just the shell.

And it doesn’t always work too well!

Though what truly matters lies within…

To ignore that part would be a sin.

I laugh and love, from deep inside…

My emotions are hard for me to hide!

I wish, and dream, and set my goals…

I don’t always reach them, truth be told!

Sometimes I hurt, and even cry…

I face defeat with a mighty sigh.

Though it isn’t long before I bend,

And pick myself back up again.

Our differences are small, you see.

We want the same things, you and me.

To love and live, have dreams come true…

Clear out the old, bring in the new!

My shell, it may not win the game…

But I’ll get where I’m going, just the same.

So don’t just stare…please see what’s true.

That in the end, I’m just like you!

   

There's No Place Like Home!

Okay...that title's a little deceiving!  This post is not about home, really--it's more about dreams.  And.....shoes.  And dreams that involve...well, sparkly red can't-wear-them-but-REALLY-WANT-THEM shoes!  That's where the title comes in...stay with me and you shall see!

A few days ago I was fortunate to meet a new friend on Facebook who is in the process of getting a pair of helios braces (like the ones I wear.)  I explained how that process went for me in a previous post entitled Miracles Do Happen, as I consider these braces (and how I came to get them,) to be a miracle!  This new friend had a lot of questions about fit, function, whether or not the expense of the helios was worth it...and was curious about shoes that would work well with these types of braces.  And I was glad to pass on any information I had, because when I went through the experience I had the same concerns...but didn't know anyone else who wore helios.  I had to be content with finding things out as I went along, because I didn't have much of a choice.  The doctor who made my braces answered questions as best he could, even the ones I had about shoes...though it wasn't quite the same as speaking to someone with first hand experience.  As you can imagine, shoe shopping is NOT very fun when you wear braces...and it was helpful for the doctor to point me toward what brand(s) would work well, which cut down on the amount of shoes I needed to try.  This was good, because trying on shoes is NEVER fun for me.  And let's be honest...shoe shopping is a girl thing!  I've never overheard a couple of guys talking about getting together for a shoe shopping trip (and actually being excited about it.)  Most men I know wear their shoes completely out...until they are forced to buy a new pair, or break out the duct tape.  (Sometimes it's easy to spot the single guys if you look at their feet, ladies...no self respecting woman would EVER allow their man out of doors with dirty, holey, duct tape-covered shoes!)  And even though I AM a girl and have that 'shopping gene' that most girls tend to have, for me the thought of shopping for shoes is pretty close to a nightmare.  Though I must admit that nightmare has calmed down over the years since I got the helios...but it's still a process! 

For those readers who don't wear braces, I thought a little background might be in order...so you could understand why I might view shoe shopping as a scary thing.  I actually thought a few pictures might help, and surprisingly enough I have kept my old braces.  Why??  I really have no idea!  I certainly could never walk in them again, if for some reason my helios were destroyed in a fiery explosion, or stolen by bandits in the night.  Trying to walk in the old braces after all these years of adapting to the new ones would be like trying to walk through tar...I'd be unbalanced and uncoordinated, and most likely would end up flat on my face.  So maybe I've kept them for sentimental reasons; for those moments that pop up where I'm frustrated with my CMT, and angry at having to wear braces at all.  I can open my closet and take a peek at my past, and remember how far I really have come!  Don't get me wrong...I am very grateful for my initial braces, even if I didn't like them very much.  They got me through a lot of years, and opened doors for me that initially had been closed.  But they also created new struggles and frustrations, such as shopping for appropriate footwear...which leads me back to my shoe shopping nightmare.  First of all, it's just plain embarrassing to sit down and try on shoes in the middle of a crowded store, when your legs are covered in plastic, bolts and straps.  My old braces were thicker and had more parts, making me feel like Frankenstein's monster as I strapped them on and attempted to shove my feet into a pair of size 8 1/2-9 sneakers before anyone saw me.  Which is virtually impossible to do--quite frankly, it's HARD to shove your feet into sneakers in a hurry when they're covered in heavy plastic with bolts on each side.  Eventually someone will notice!  I have long since gotten over the embarrassment of trying on shoes (well, mostly...) and don't try so hard to hide myself in order to accomplish it.  It is what it is.  Though things have improved with the new helios...they have helped me face those fears, and I hold my head a little higher as I enter a shoe store and sit amongst the racks.  

For one thing, my helios have no straps, or bolts...except for one strap that goes behind my knee.  They are thinner, and do not cover the entire backs of my legs like my old pair--which is a lot nicer in the summertime.  My balance is improved by the bar that sits in front of my knee, and essentially allows me to lean into them as I walk, which stabilizes me.  As for shoes?  They give me a few more choices...I am not bound solely to sneakers, and the majority of the time I wear sandals, like the ones seen in this photo.  I also get to wear shoes closer to my actual foot size, which is 5.  This also improves my gait, as increasing someone's shoe size 3x's tends to throw off their balance a little!

Though even a woman like me, who can't wear fancy heels and hasn't had many positive shoe shopping experiences, dreams about slipping on a pair of sparkly, high heeled shoes once in a while just to see how they would look.  I've never actually had the courage to do that before now, as I feel a little silly...I'll never be able to wear heels, unless someone creates braces formed like Barbie's feet so I can slip on those 5 inchers, and be on my way!  But still...it's fun to dream, and I've always wanted to see my tiny feet in sexy red heels.  And so I finally did it!  Walking through Macy's with my friend and coworker K, we hit the shoe department...and I found a seat.  I wasn't intending to try anything on, as their prices were well out of my reach.  I was sitting and resting while K looked through the racks, being quite practical about the whole thing...when I looked up and saw a pair of 5 inch, sparkly red heels balanced in her hands.  "OOOHHHH!"  I exclaimed, and all my practicality went rushing out of me.  They were Dorothy's shoes from the Wizard of Oz, with a kick!  Immediately I could see myself wearing them, clicking my heels together and saying there's no place like home!  K soon shook me out of my fantasy, by making it a reality.  "C'mon, Christine!" she said to me, "take off those braces.  You're trying these on!"  And so I obeyed...I just couldn't resist!  And you know what??  It was FUN.  I've never had a fun experience in a shoe store before, and I guess it was about time!  You might think I would find a pair of heels depressing; another reminder of what I CAN'T do, but you'd be wrong.  I'm not upset that I can't walk out of the store in those heels--I'm under no illusions of that ever happening, and that's okay.  The practical side of me still exists...but these weren't practical shoes--they were DREAM shoes.  And now that dream has been fulfilled!

For those readers out there who do wear braces, I've narrowed the field a little...and found a few brands that seem to work the best.  New Balance sneakers fit well, as they come in wider sizes which allows for the orthotics, and you can easily remove the padded inserts since they are not glued down.  Another shoe that works well is Teva, though they are harder to find in stores.  I found one pair of Teva sandals in a store (the ones in the picture,) and went to their website: http://www.teva.com/ and bought another pair in a different color.  They also sell other shoe choices on that site, and I'm hoping to get a different style sometime soon.  Till then?  I'll keep being practical of course...though once in a while, I'll let the dreams slip in, and take those fun opportunities when they present themselves.  And since I listened to K (instead of my fears) I'll forever have that memory of my feet in pretty, red heels...and that will always make me smile!

Mother, May I?

There is one job on earth that has no retirement, no pension plan, or 401K.  There is no guarantee of any health benefits, which isn't much of a problem...because there is no such thing as a 'sick day' or 'worker's compensation' for getting hurt on the job.  This occupation is 24/7; those who wish for 9-5 work hours need not apply!  No manual exists with specific guidelines to follow,  letting you know if you are doing the right things.  On top of it all, there is no PAY.   Now, I ask you...who in their right MIND would ever take a job like that??  Women all over the world, that's who!  I'm talking about the hardest job on earth, of course.  MOTHERHOOD.

As we grow up, the days seem to be filled with that oh-so-important question..."Mother, may I?"  "May I play on the swings?"  "May I have a sleepover??"  And that one question that puts a little fear into every mother's heart, "May I borrow the CAR??"   Mothers are the ones we turn to in order to learn our limits, boost our confidence, and find the courage to face our obstacles.  Eventually, it is every mother's job to let go of the children they focused on for so long, to let them make their own ways in the world...and make their own mistakes.  If they did their jobs well, those children will learn lessons from their mistakes, move on in life and be all the stronger for it.  And even after the children are grown, if and when one of them needs a helping hand, a true mother is there to extend her own.  I know that all mothers in the world are not like this, and there are some who aren't meant to be 'Moms'...because being a Mom takes a special kind of person.  I can only give you insight about one of these special people, so without further delay, let me tell you about my Mom.

It is surprising how much talent and generosity lies behind those quiet eyes.  My mother is small in stature only...what is underneath is tremendous!  I mentioned before about the gifts I have inherited from my parents, and my artistic abilities definitely come from her, though that is where the creative similarities end.  What I can accomplish with a paintbrush and canvas, she can create with her sewing machine.  I know as she reads this post she will say sewing is no big deal...but it is.  When I was about 14 years of age I decided I wanted to learn how to sew, so that I could make my own clothes, quilted blankets and beautiful baby toys...I was going to be known for my amazing talent and unique fashion sense (though in a good way!)  Really...I had it all planned out.  I even had sewing patterns I was eyeing, and a dress that would be my first official handmade 'outfit'.  My mother quickly put that idea out of my head, and informed me that she would teach me, but I would learn to make a simple skirt first...and go from there.  I must say I was disappointed, but figured as soon as she saw how much talent I had for the task, we would soon move onto more difficult items.  And so we went shopping.  She let me pick out my own fabric, and like any 14 year old with big ideas and lofty dreams I chose two stretchy, cotton, bright colored fabrics with which I would make two beautiful skirts (and be the envy of all my friends.)  And as soon as those skirts were washed they would shrink down to the size of potholders, and the only way I would be allowed out the door was if I wore them as hand warmers.  This did not sway me, however...and soon we were driving home, with folds of this beautiful fabric sitting on my lap!

Now, what makes a skirt easy to sew is very simple.  Basically, you need to hem the bottom (sewing in a straight line,) and if you use elastic for the top, you can eliminate those pesky zippers, snaps and buttons.  Though none of it scared me!  I was brave as I cut the pattern out of my gaudy...ahem...GORGEOUS fabric like my mother showed me, and pinned the entire hem to get ready for the exciting part (pinning I found to be quite tedious, and frankly I didn't see the point...I mean, this whole sewing thing was gonna be easy, right?  I could sew in a straight line--who needed PINS??)  Finally I was seated in my mother's chair...in front of her coveted sewing machine.  I couldn't wait!!  I set the fabric and bobbin into place like she showed me, and lightly pressed my foot onto the foot control...and that's when all hell broke loose.  The lovingly-cut fabric shot off in one direction, my hands shot off in another, thread flew all over the place...it was madness!  Now, one might say that a person who has CMT and limited function/control in their legs and feet, might not be very good at a project that involves using a foot control.  And I'm sure my mother could have saved herself a lot of time and trouble by pointing this out to me...she chose, however, to encourage me to try.  Like any good mother, she guided me through the process without completely taking over, and assumed I would figure out the rest.  And so I did.  Let me assure you--I do NOT make my own clothes, blankets or baby toys...and if I'm admired for my great fashion sense, it comes from shopping at Target (a store that does not have a fabric section!)

And let me also assure you--my mother does not sew her own clothes all day.  In fact, I can't remember the last time she made something for herself...that's where the generosity comes in.  My mom has been making blankets and baby clothes, and tote bags for the homeless (which she fills with necessities) for as long as I can remember.  Along with sewing up a storm, she knits hats and mittens, sweaters and such...and delivers these items to people in need.  A lot of her creations are mailed to Mississippi, to a church that aids the poor.  She even made my adopted soldier a travel blanket/pillow that rolled up into an easy-to-carry pack.  Most of the fabrics she has are donated from friends and family, and she finds a use for all of it.  (The really heinous ones are used as lining for blankets.)  And when any one of us needs a pair of pants hemmed or a shirt shortened, we take it to her...my mother has also made curtains for my apartments, comforters for my bed, and crocheted me a blanket or two.  And her generosity is not limited to sewing and knitting...she is also there to lend a helping hand during the really difficult times of my life; such as moving in with me and nursing me back to health when my back goes out, and I am unable to walk until I have completely recovered.

And all of this is just a sample of what my mom is all about...I could write more, but what would I talk about on our next Mother's Day??  So for now, I will leave you with this Irish blessing for Mothers...in honor of all those wonderful Moms out there--including my own.

There is but one and only one,

whose love will fail you never.

One who lives from sun to sun,

with constant fond endeavor.

There is but one and only one,

on earth there is no other.

In Heaven a noble work was done,

when God gave man a mother.

HAPPY MOTHER'S DAY!!

              

My Wake Up Call

I've been feeling sorry for myself today.  Since I woke up I've been surrounded by a funk, full of boredom and loneliness with a little 'lack of motivation' thrown in.  I didn't even feel the urge for my trusty television to fill the silence; a big indication that something is not right!  Even this blog, which has become a wonderful outlet for me and provided me with an opportunity to be creative on a weekly basis, could not draw me out of my own depression...in fact, when I tried to come up with a topic to write about nothing came to mind.  Which is unusual, to say the least!  So in an attempt to drag myself out of my own way, I got out of my pajamas (around 6pm...sad, I know,) and went to my parent's house...to try and distract myself with trivia games and Yatzee.  Needless to say I failed miserably at trivia, but I did manage to win a game of Yatzee...it's all in the wrist, I guess!

Why am I sharing this with all of you?  For the simple reason that it is a very human trait to fall into these funks every so often, and it's something I'm sure everyone has experienced for themselves...sometimes you just have to feel the emotions and let them happen.  Not that knowing this makes the feelings any easier!  I don't fall into these moods very often, thank God, but when I do it usually takes something to 'snap me out of it' and get me looking at the bright side of things again.  Luckily that something was a carefully written letter, from a child's hand, lying on my parent's dining room table.  Now, I am not in the habit of reading other people's mail, but I recognized this letter for what it was--the most recent correspondence from one of their sponsored children.  For about 10 years now, my parents have sponsored two children through the Christian Foundation for Children & Aging organization; Susan from Kenya, and Olga from Guatemala.  Susan, now 15 years old, wrote the letter that caught my eye.

The line that truly snapped me out of my own sad mood was written after an explanation on how she continues to work hard at her studies...as Susan so elegantly put it, "The sky is not the limit."  It is her dream to become an accountant, and she lets nothing stop her from reaching for that goal...despite the hardships she faces daily, along with her family.  An impressive dream, especially for a young person who has not had things easy throughout her life; I'd be hard pressed to find someone of the same age in our country, pushing daily toward such a goal.  As I was getting ready to leave I asked my mother if I could see more letters from Susan, and she gave me an entire file with letters and updates on both children to take home.  The rest of her letters (and Olga's) were enough to change my mood for the better, and realize how silly I was being...I was feeling sorry for myself because I didn't have ENOUGH to keep me busy.  These letters my parents have received, are from two young women who are VERY busy planting gardens and harvesting crops with their families, in order to survive.  And while doing all of that, they are getting an education as well, and working toward goals such as becoming an accountant; it has been Olga's dream to become a teacher, so that she can help support her family (she is now 21 years old, and has 7 brothers.)  It was amazing to read through all of their letters, and see them grow up through those pages...and you know what struck me the most?  How thankful Susan and Olga have continued to be over the past 10 years; not only for my parents who sponsor them, but for things that many of us take for granted--food to eat and running water, good health, and the love of their families.

Does this mean that I will boldly go throughout life, never again feeling down and sorry for myself??  Of course not; I am human, after all...and I will have my good moments, and bad ones.  Hopefully in the future when I find myself in one of the bad moments, I can shake out of it a little quicker by thinking of people such as Susan and Olga, and be thankful that I was given the opportunity to learn about their lives...and maybe I'll be a little more appreciative for the gifts I have been given in my own.  If you would like to learn more about the Christian Foundtation for Children & Aging organization, go to http://www.cfcausa.org/.  There, you can learn about the many people being helped through sponsorship, and read some of their stories.  And after doing so, you may wish to become a sponsor as well...it's a great opportunity to help someone in need, a goal for which you can be truly thankful!