Sunday, September 25, 2011

The Power of Friendship

One of the most important things I have learned in my life is how crucial it is to form lasting friendships and strong bonds with people whom you can trust, and count on during the difficult times.  What I mean is, the people you can call on when the world grows cold...when it seems that there is nowhere to turn.  If you can also relax and laugh with these friends, and share the funny times as well, then you are doubly blessed!  Because when it comes down to the moment you leave this world it will not matter what your possessions were or how many things you won't matter how much money was listed in your bankbook.  You can't take any of that with you!  What will matter is what you meant to people while you were here, and knowing you were able to be a friend to them as they were a friend to you.  I'm sure you've heard such statements before...but have you really sat down and thought about it?  Do you have such friends you know you can call on, and count on when it matters most?

Now, when it comes right down to it I am pretty shy.  When I meet someone new it takes a while for me to open up...and because of this I don't have a list of acquaintances who's names fill numerous address books.  I have the same old address book I've had for years, and it mostly contains the names of my closest friends...written in pencil.  And when someone moves I change their location...the book is so old it's falling apart!  But these are the people who mean the most to me, and so other than the addresses, not much will change.  The ones I see the most are those I work with, joke with--sometimes cry with.  And there are the ones from my years in art school, whom I still talk to on the phone and through e-mails on a weekly basis (though unfortunately don't get to see nearly as often as I would like.)  These people have become my extended family!  And my book is of course filled with my actual family, their names also written in pencil...old erase marks scarring the pages.  Though today I am thinking about one friend in particular; the person I've known the longest, other than the family I'm related to through blood.  My best friend K, from middle school.

I grew up in the country, in a little town called Pittstown, NY.  It's still beautiful there, and still so small, if you blink as you drive through town you could miss it.  That was the only world I ever knew during most of my childhood, and to me it seemed huge!  Our house was across from a cornfield, and my closest friend lived more than a mile away.   That's how my world remained, until the year I was in 8th grade.  Mid-year, my family moved to Guilderland NY, so that my parents could be closer to Albany where they both worked.  Guilderland loomed large in my eyes, and there were no cornfields across the road...only lots of houses.  The school was even larger, making my old school seem like a closet in can imagine how scary it was to walk through those doors on the first day.  I was petrified!  I didn't think I'd get through it, or meet anyone I could talk to or become friends with.  I was wrong on all counts!  I think it was in the cafeteria of all places, where I found a sea of kids I didn't know, who all seemed to be staring my way.  I don't remember if I approached her and asked to sit down--or if she took pity on me, and offered a seat at her table.  All I know is ever since that moment, we've been thick as thieves...and even if we haven't seen each other for years, as soon as we're together again we start talking as if we just saw each other the day before.

Now I've mentioned in the past that my CMT symptoms really started to show at age 13...precisely the age I was when I walked into that cafeteria.  And even though I was a tiny knock-kneed nerd with my nose buried in a book, and an Afro (yes, I had an AFRO...but that's a whole other story, requiring a BIG box of tissues...) and even though there was obviously something different about me (physically,) K did not care one hoot about any of that.  She thought I was funny and nice, and I thought the same about her...and it's been kismet ever since!  We were soon inseparable.  She became my protector in a way, as she took NO crap from anyone, and I was often picked on by other kids.  And K taught me how to laugh at any situation, and myself whenever I could...because she let me know it was okay to be just who I was.  I'm very thankful to have known her for all of these years, and that I met her when I needed a friend the most!

K's name remains written in my address book (in pencil) and the location has been changed a few times over the years, though I am happy to say that in less than one week I get to erase it once again--because the friend I've known for 27 years is moving...and she and her family will live just a few doors away from me!  I can't WAIT to write that address!  Finally we will get to fulfill that childhood dream of living right next door to each other, with our husbands and children, where we will get together for weekly barbecues and family fun!  Of course, I am not married...and my children have fur...aaaand, I don't own a barbecue.  But you get the picture!  It will be great to see K more than a few times a year, and to have her right next door.  Maybe someday we'll have the other dream qualifications checked off our list...who knows?  Hmmm...maybe I should at least buy a barbecue!

To ALL of my close friends and family including K: you mean the world to me!  You will forever be so much more than mere names in an address book.  And to all my other readers: if you think hard about that earlier question, yet no one special comes to mind...maybe you just haven't met the right people with whom you can forge long lasting friendships.  Maybe you need to open yourself up a little more, and be willing to trust someone.  And maybe, just maybe, you can find that certain someone in the sea of your acquaintances...that someone you can laugh with and cry with, and count on when it truly matters.  And if you are lucky like me, you'll find more than one.  When you do, hold onto those friendships--as they are the ones that make this life worth living!

Monday, September 19, 2011

Set Backs and Strides Forward

Well, life goes on.  There are some days when the coffee comes out perfect, the hairdo looks good and all the lights on the way to work are green.  And there are other days when you are thrown for a loop, and it makes you take a few steps back to reassess the situation...or, let's be honest--it makes you scream and cry, and pound your fists!  And THEN you step back and pull yourself together as best you can...and reevaluate the path that lies ahead of you.  

We recently had our CMT support group meeting, where we discussed the things that have helped us, and issues we still struggle with.  You can never have one without the other when you have this disease; it's just the nature of the CMT beast.  Luckily I did have positive things to share, such as a supplement I found a few months ago called 'NeuroRecovery' that boasts its abilities to support nerve tissue renewal and remyelination for people with neurological disorders.  I have seen a lot of positive changes since starting to take this daily supplement: my balance is better, I have less numbness in my legs and hands, and I don't feel like I'm trying to stand in the middle of an ice-skating rink in heels when I take a shower.  All good things!  In the near future I'm going to try another treatment called Russian Stimulation (it's sounds more fun than it is, I think...) which is a form of electric stimulation that is supposed to help improve your muscles.  Quite frankly it makes me a little nervous, and brings back scary memories of childhood visits to 'The Neurologist' which were never about anything pleasant...and involved painful nerve conduction tests that still make me cringe!  The difference is that now I am an adult, and if something REALLY hurts, I have no qualms about aiming a well-placed kick to where it will do the most damage.  (Just kidding, Dr. T!)  Of course, like other opportunities that come my way, I will try it...hopefully it will involve minimal pain and also bring on some improvement!

The recent setback I mentioned was a little upsetting, and I admit...I DID scream out of pure frustration.  Sometimes you just have to let it out!  You see, years ago when I actually found out that CMT existed, I was sent for a blood test to confirm that this was what I had.  I think the actual test took about 10 minutes, and I was told that I did have CMT and there were 16 different types (I think they have discovered more since then)...and some point after that statement was uttered, is when my memory gets a little fuzzy.  I think I was in shock!  I learned that I had this disease with no cure; a disorder 'The Neurologist' had never mentioned...that NO ONE had ever mentioned before.  I'm pretty sure they told me what type of CMT I actually had, though to tell you the truth I don't remember.  At the time it didn't seem to matter fact, for the next 14 years it still didn't seem to matter.  I had CMT, my symptoms were what they were, and most people within the medical community (and beyond) still had never heard of my disease.  Until I learned about a local CMT support group that was starting in Albany, I pretty much went on with my life as before, learning how to adapt the way I did things as my body would change and tasks became harder.  I never dreamed that I would one day meet others with the same disease, or that there would be a group of scientists from many different countries working to find a medication to finally stop the progression of CMT.  But those things have now happened!  And that brings us to my dilemma.

I figured for all these years that the type of CMT I had was Type 1A, which is the most common.  I seemed to fit the criteria for 1A, whenever I had the opportunity to read about its symptoms.  And once I found out that the CMTA scientists were hopeful they would find a medication to stop this type within 3-5 years, I was even more excited!  Until I found out last week that I don't, in fact, have Type 1A.  Is this the end of the world?  Hardly.  These wonderful scientists are also working to find a medication to stop CMT Type 2, which will take longer than 3-5 years most likely, but I believe it will happen...and I continue to have hope.  Of course, I am still waiting to find out exactly what type of CMT I do may be type 2, and it may not.  My medical records are lengthy, and it takes a little searching to find the answer.  If I don't have type 2, well...I'll cross that bridge when I come to it.  In the meantime I'll continue with the supplements that are working, and hopefully find some more.  Which leads us to my other insurance (Medicare) pays absolutely NOTHING toward the cost of alternative medications, so you may soon see me on the side of the road with a sign saying "Will Work For Supplements"...if you do, wave hello and honk your horn!

And if you are a reader who has CMT, check out this website if you'd like to learn more about 'NeuroRecovery' and possibly order your own...even if you don't have this disease, but you do have another neurological disorder (such as Multiple Sclerosis) you may find it beneficial:  Any further treatments I come across I will be sure to share, including my results from the Russian Stim (hopefully I will have NO pain or bruises to report, and neither will the doctor!)  In the meantime I intend to keep fighting...if and when I come across any further hurdles, I will do my best to cross them and continue on my way!

Monday, September 12, 2011

In Remembrance

Sometimes my words are not enough. What I hear, and see and feel remains so overwhelming, I can only attempt at getting it right...I can only play at putting my thoughts into concrete words without letting my emotions get away from me. Yesterday, September 11th, is a date that will never again stand for anything else in my mind, nor the minds of many others. Will I ever forget? It is highly unlikely. And I am fortunate enough that the memories of that day do not involve any friends or loved ones...I did not personally know anyone who died in that tragedy. Though despite this fact I will always remember where I was and what I was doing, when the planes crashed into New York City's Twin Towers on 9/11/01.

The reason I cannot forget is not only because of the numbers of people we lost on that terrible day, or even because of the way in which we lost them. In my head it isn't the knowledge of who was President during that time or the nature of his response to the event, which makes me remember. The reason I will never forget that day is due to one small, yet very powerful word...HATE. There have been so many instances of pure hatred that stick in my mind, though before 2001 I had only read about them in history books and learned about them through documentaries on TV. All of these events, including 9/11, still bring me to tears...each and every last one of them.  For though I know hatred exists, to see it and be reminded of its sick presence tightens my chest and makes it hard to breathe...I find it confusing that any one person or group of people could hold onto such strong negativity and darkness, and aim it at another--under the guise of religious beliefs or the color of someone's skin. For I truly think it is a disguise, to cover hatred with the flimsy blankets of race, color or creed. Evil is what it is, and sadly I think it will always remain in the world if we continue to feed it and nurture it...and the ways we justify our actions and our hate, to ourselves and others, are just excuses.

When I think about all of those people, almost 3000 Americans who lost their lives that day, I struggle with the realization that we have so far to go in this world to achieve peace...and peace for everyone, without exclusion! I don't know if we will ever reach that level of peace, where we will gauge our time on this earth by the positive events that occur...not the negative ones that only serve to harm. I fear that we are only able to see a world like this as existing on another plane...such as in Heaven, if that is your belief, or a Utopia which we hope to one day reach. I worry that if we can't see such peace as possible in this world, we will continue to allow hate into our hearts against others...our differences will remain a source of tension instead of being accepted and celebrated. I still strive to understand the people and groups who have been responsible for the tragedies we have endured in the past, and I mostly fall short. I struggle to forgive the people who have been taught this kind of hate, and seem to embrace it...for I believe that we will only reach the peace we hope for through love and forgiveness. I try to learn from our mistakes, as a whole...and hope that in the end I have managed to do the best with the time I've been given.

There are many well known figures in history who stand out for the good works they have done, and their ability to live their lives with grace, pride and dignity.  As I remember those who have fallen in the tragedy of September 11, 2001, I will remember the many who displayed those qualities, and gave their lives in the attempt to save others.  The selflessness and strength of these people will never be forgotten, and we should try our best to learn from their example.   I am reminded of another person who lived in such a way, preaching love and forgiveness throughout her life; Mother Theresa.  As you honor those whom you have lost and struggle to understand why, may her words be a source of comfort...and may we all strive to one day live up to them.

May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.
Mother Theresa

Friday, September 2, 2011

A Starry Night Evening!

It's amazing how attached you get to something without even knowing it, until suddenly it has been taken away!  I never realized just how much I rely on my laptop (and the Internet) on a daily basis...which is funny, because I don't consider myself to be very knowledgeable when it comes to computers.  No, really!  To me the Internet is a monstrous world that scares me a little, and amazes me all at the same time.  I can order something, look at cat pictures, check in with friends and do my banking all within the span of a few minutes...and I never have to leave the house.  And yet, if you asked me how it all works I wouldn't have the faintest idea.  So of course, like anyone else who greatly lacks in computer skills, I became an online blogger.  Makes total sense, right?

What is really scary (even more so than the giant Internet,) is how easy it is to put off other activities so that I can do something like check my mail just ONE MORE TIME...before I realized it, I became hooked.  And that is not a good thing.  Having a disability has already put obstacles in my way when it comes to living my life...a whole host of reasons that put kinks in the armor, and cause me to say "No" when faced with opportunities.  Some of these reasons are perfectly valid, like pain and tiredness...and then there's fear.  Often I let the fear take over; fear of the unknown, and fear of what may be difficult.  It's easy to do--especially when things have happened to me in the past such as being knocked down in a place that is too crowded, or having nowhere to sit and throwing my back out from standing too long.  It may seem silly, but I actually try to AVOID pain whenever I can.  Call me crazy! 

Though I began to realize (even before my computer caught a virus,) that I was also avoiding life.  I was happy here in my little home with the cats and my computer, inside my little fur-filled bubble.  And then the boredom started to creep in...a little at a time, until I realized my bubble had gotten very small.  Oh, I had my social moments...I still had work three days a week where at least I got to see other people.  And there was my pool therapy, which got me out the door a couple more times.  You may realize that both of these activities may be more work than fun, however, and you'd be right...and as soon as I returned home from one of them, the boredom bubble would greet me with the question "Where have you BEEN?"   Of course, I had my CMT support group meetings...and I still thank God that my friend M started that group!  It is a very bright spot in my life.  And I started this blog which allowed me to reach out to others, laugh and vent, and explore my creativity while raising awareness for CMT. But despite those things, I found myself craving more.  And then my main outlet to the outside world (and to my blog) was so rudely taken AWAY.  Not only was I stuck in this bubble, but now the oxygen was slowly leaking out!

I realized I needed to make some changes, and at least find some activities I could do at home for myself.  Something beyond the computer, so that the Internet...and even my writing, did not become the only thing I had to increase the size of my world.  Luckily an opportunity found its way into my path, and for once I did not say "NO!"  A few months ago, M contacted an organization called Art de Cure, that does something very innovative...they place galleries within medical offices so that patients and other visitors have something besides magazines to enjoy.   Certainly sounds better than the outdated copies of PEOPLE you usually find at your doctor's offices, right?  And it gets better...not only can you walk around and view the art and work of many different regional artists, you can purchase the work, and 40% of the proceeds goes toward a charity.  Art de Cure's first gallery was housed in a medical office called The Endocrine Group, which specializes in the care of people with diabetes.  Last year, because of the sales of artwork sold at that gallery, over $12,000 was raised for the American Diabetes Association.  This year, a new Art de Cure gallery will be opening in the CPO (Clinical Prosthetics & Orthotics) building at 149 South Lake Avenue in Albany, NY, and proceeds will go to the Charcot Marie Tooth Association for research toward finding a cure for CMT.  Who knows what we can accomplish, and what goals we can reach?  And best of all, I found my opportunity to shut down the computer once in a while and focus my attention on something new...for I am one of the artists who will be showcasing her work in the CPO's gallery!  So on 12/2/2011 from 5-9pm, come join us for our 'Starry Night' evening (named for the CMTA's STAR research program and the famous painting by Vincent Van Gogh,) to view some great artwork, listen to music, and have some fun!  We will be having a silent art auction as well, including quilts, jewelry and more.  Hope you can join us! 

If you would like more information about Art de Cure, visit their website at: and learn more about their wonderful organization!  And save the date for the next Art de Cure opening on December 2nd...I know I will.  Now, if you'll excuse me, I need to shut this computer down and start my next painting!