Happy Halloween!

I'll admit it...Halloween is NOT my favorite holiday.  I lean toward those special days that give me the opportunity to buy presents for the people I care about the most...such as Christmas, and of course, birthdays.  (Yes, I know birthdays aren't technically holidays...except for mine, of course!  I'm working on getting it Nationally recognized--didn't you know??)  Ahem.  Anyway, back to the topic at hand...Halloween.  The costume idea is kind of interesting...I suppose getting the chance to be someone or something else for a few hours can be appealing.  And I do enjoy seeing little kids dressed in their costumes...and grown-ups who are big fans of this holiday, such as my friend L and her husband--who really put a lot of time and effort into their costumes each year, and decorate their home as a haunted house for family and friends.  That's the way to do it!   Where Halloween tends to fall short for me is when I see 18 year olds (or even older) wearing ripped t-shirts and dabs of fake blood dripping from their mouths as they shove candy bags under my nose.  There's no "Trick-or-Treats" or expressions of thanks to accompany their intrusions...and it just doesn't impress me.  I say if you're going to enjoy Halloween the proper way, then put some effort into it! Red dye # 4 oozing from your lip and an old Hanes undershirt does not a costume make...and if you get paid more than I do, well...then you can buy your own candy!

What I do like about Halloween are all the scary movies, especially the classics, that pop up on the TV around this time of year...such as the 1978 film Halloween with Jamie Lee Curtis.  Back then we shared her fear as she was terrorized by the masked murderer, Micheal Myers.  And I will always watch the scary Alfred Hitchcock classics, such as 1960's Psycho...I dare you to watch that movie and jump in the shower afterward, without shaking and keeping a close eye on the shower curtain!  Another favorite of mine is 1954's Rear Window...what a movie!  When Jimmy Stewart's character L.B. Jeffries realizes his neighbor (the murderer) sees him watching through the window of his apartment, where Jeffries sits helpless with a broken leg...I'm on the edge of my seat!  The fact that those Hitchcock movies are in black and white, makes them even more suspenseful...I think sometimes all that blood and gore can get in the way.

And I have seen the bloodier, gorier movies too...many of them.  And they are frightening--usually I can't sit through movies like that without company!  But I think the more realistic and sometimes simpler movies frighten me more with their suspense alone; they are much scarier in my opinion.  It's more frightening to watch a movie I can actually envision myself in, and share the character's experiences as I bite my nails...and every so often, I'll throw a casual look over my shoulder to make sure I'm still alone.  My favorite type of Halloween is the kind where I can spend it huddled indoors under a blanket--with a scary movie to watch, or a suspenseful book to read.  And since I can't load a movie on here (wait...can I?  I'll have to look into that...) I started searching the great wide web for scary stories.  My father actually found this interesting website which he shared with me, and it's filled with ghost stories (some more frightening than others,) fables, and frightening tales from all over America...they even have videos to watch!  There's also a section of children's ghost stories that are more appropriate for the little ones, and tales to share around the campfire.  If you'd like to check it out as you are stuck indoors on this wintry Halloween weekend, go to: http://americanfolklore.net/.  It might just scare you!

As I explored the different sections of American Folklore, I found an interesting short story from local areas I'm very familiar with...don't worry--it's not too frightening!  I decided to share it with you...see if any of these places sound familiar! 

Fifty-Cent Piece

A New York Ghost Story
retold by
S. E. Schlosser
There is a story told in Troy and Albany about a couple returning home from a trip to New England. They were driving home in a carriage, and were somewhere near Spiegletown when the light failed and they knew they would have to seek shelter for the night.
The husband spied a light through the trees and turned their horse into a small lane leading up a hill. A pleasant little house stood at the crest, and an old man and his wife met the couple at the door. They were in nightclothes and were obviously about to turn in, but they welcomed the travelers and offered them a room. The old woman bustled about making tea and offering freshly-baked cakes. Then the travelers were shown to their room. The husband wanted to pay the old couple for their lodgings, but the old lady shook her head and the old man refused any payment for such a small service to their fellow New Yorkers.
The travelers awoke early and tiptoed out of the house, leaving a shiny fifty-cent coin in the center of the kitchen table where the old couple could not miss it. The husband hitched up the horse and they went a few miles before they broke their fast at a little restaurant in Spiegletown.
The husband mention the nice old couple to the owner of the restaurant and the man turned pale.
"Where did you say that house was?" he asked. The husband described the location in detail.
"You must be mistaken," said the restaurant owner. "That house was destroyed three years ago by a fire that killed the Brown family."
"I don't believe it," the husband said flatly. "Mr. and Mrs. Brown were alive and well last night."
After debating for a few more minutes, the couple and the restaurant owner drove the carriage back out of town towards the old Brown place. They turned into the lane, which was overgrown with weeds, and climbed the hill to the crest. There they found a burned out shell of a house that had obviously not sheltered anyone for a long time.
"I must have missed the track," said the husband. And then his wife gave a terrified scream and fainted into his arms. As he caught her, the husband looked into the ruin and saw a burnt table with a shiny fifty-cent piece lying in the center.

Hope you enjoyed reading that little tale...to read more, check out the site and do some exploring.  As for me, I think it's time for hot chocolate, and some Alfred Hitchcock. Happy Halloween, everybody!

Moving Forward

My recent post entitled 'We Are The 99 Percent' was very difficult for me to write.  It was hard to log onto the '99' website and read story after heart wrenching story about the struggles we are facing in America...it was even harder to realize just how many of these stories could be mine, if just one situation changed.  If I lost my family support...if I lost my job...if I lost the ability to work the part-time hours I currently work.  So many people in this country, including myself, face that stress everyday...the stress of what could happen.  One part of my brain tells me just how lucky I am--for I am warm, with clothes on my back and food in my fridge, and I have the support of family and friends.  And the other part of my brain reminds me of the 'maybees' that could happen at any time.  These opposing sides like to debate every so often, when things are too quiet or I am trying desperately to drop off into sleep.

So why am I bringing this up again?  Because this can't be the end of it--there has to be MORE.  It can't stop with one post, or one visit to a disturbing website...it's not something to be shared once and forgotten about.  It can't be the only thing to focus on either, as it is important to have balance.  I know this, and continue to work on other projects such as raising CMT awareness, and helping to prepare for the Art De Cure gallery opening (to benefit the CMTA) on December 2nd.  And I have also been trying to BREATHE once in a while, and do something just for the sake of doing it--such as travelling to Schroon Lake and taking pictures of the leaves.  No one really benefits from that activity except for me, but that's okay...sometimes you need to do things just to make yourself happy.

But it is unavoidable...my brain likes to travel just as much as the rest of me, and soon enough I find myself immersed within the stress again.  Thinking about everything I've learned, and thinking about the 'maybees'.  It kind of explains my addiction to television, right?  It does help to distract me!  Though when I can no longer be distracted, I start thinking about what else I could be doing.  Sometimes I get nowhere...and once in a while, if I'm lucky, I come up with an idea.  And so I started thinking the other day about all of those stories I read, and I realized the ones that really struck me were written by people who have become homeless because of their struggles in this failing economy.  This is a growing issue along with hunger, and one I cannot even imagine...I hope I never learn first hand what living with homelessness is like.  So in thinking of this problem, I asked myself the question "What more can I do?"  I wish I had the financial resources to eradicate both issues, or at least to make a significant dent...but I don't.  Often around the Thanksgiving holidays I'll see a notice in the mail, about an upcoming 'perishable food collection' to help the hungry and homeless, and I always manage to pull something from my cabinets to donate.  But once again, I am left with the feeling that it isn't enough.

And so I started thinking about these issues, and logged onto the Internet to search for something else I could do.  What I noticed at first kind of struck me as odd.  I went to Google (which is the normal search engine I use,) typed in "What can I do about homelessness" and when I typed the 'h' in the word 'homelessness' two possible ideas came up...hot flashes, and hair loss!  Luckily I had no need to pause on either concern, and continued to type in the rest of the word...and that's when the ideas ran out.  It is obvious that more people have logged onto Google to find ways to control their night sweats and keep what little hair they have left, and I certainly hope they were successful!  But I wonder...if the issues of homelessness and hunger in this country are so huge (and I know they are,) why haven't more people looked further into finding an answer? 

Thankfully Google did provide me with a few ideas once I hit the 'enter' key, and led me in a few directions.  The first site I found which is listed below, is the National Homeless Organization.  There are many ways to help the homeless in this country, whether it be through donations or through volunteer work.  And for someone like me, who doesn't have the financial resources and may not be physically able to volunteer in places such as soup kitchens and shelters, there are other ideas as well.  The first thing the NHO prompts you to do is figure out what you do best, and how you can utilize your talents to help the problem.  And through further searching, I found ways I could use my ability to write to aid this issue...the NHO provides legislative alerts and a directory of National Housing and Homeless Organizations, to which you can write letters to your congressmen asking them to make the changes that need to be made.  And that is something I can do!  One of these organizations on their list may be one you are familiar with...Habitat for Humanity.  This is a wonderful group, which not only builds houses for needy families, it does so through the hard work of volunteers working side by side with each receiving family.  In reading the background information on how HFH started, I read their mission statement...and realized I couldn't have said it better myself.  So I copied the following statement from Habitat's website:

The Fund for Humanity’s mission statement:What the poor need is not charity but capital, not caseworkers but co-workers. And what the rich need is a wise, honorable and just way of divesting themselves of their overabundance. The Fund for Humanity will meet both of these needs. Money for the fund will come from shared gifts by those who feel they have more than they need and from non-interest bearing loans from those who cannot afford to make a gift but who do want to provide working capital for the disinherited . . . The fund will give away no money. It is not a handout.

Habitat for Humanity allows people to put their own sweat and hard work into building the home they so desperately need...giving them pride in their accomplishments, and allowing them to make the home their own.  And those of you who (like me) are unable to wield a hammer without crushing something important, can also find several other ways to help.  By clicking on [Advocate] and choosing to Send a message to congress now you can find several ways through letter writing campaigns, to tell Obama, Congress and State Leaders how you feel.  For instance, you can write a letter to Congress and ask them to support the SLUM Act, which assures that American aid is used for the greater good, and spent wisely to support those in need...and that just supports the people in this country.  At this time there are about 2 billion people around the world who live in slums, and approximately 100 million people are homeless.  My father who also writes a blog (his link is posted below as well,) talked about the issue of hunger...and at this time in the US alone, there are 3.8 million people who experience hunger on a daily basis.  These are NOT small issues, people!  They are growing everyday, and with so many in our country who are struggling just to survive, they must be addressed!    

Do I believe that writing one letter is enough to eradicate homelessness and hunger?  Of course not.  Though I also believe that by standing together we can move mountains...and our voices will finally be heard!  I have to believe that, for instead of feeling helpless, it places my feet upon a path and gives me something to do to bring positive change.  And having this to believe in makes it a little easier to breathe, and helps me sleep a little better.  So check out the websites below if you are also looking for more ways to move forward, and help where you can!  You may find a wise, honorable and just way to make a difference...now, who could argue with that?

http://www.nationalhomeless.org/factsheets/you.html
http://www.habitat.org/gov/default.aspx
http://www.capitaldistricthabitat.org/restore/
http://www.schenectadyhabitat.org/restore
http://deaconjnh.blogspot.com/2011/08/plenty-and-hunger.html

Just Days Away!!

Another birthday is on the horizon...and no, it's not mine!  But it's just as wonderful, and just as momentous...so I am writing this post today, to wish my funny and talented brother a HAPPY BIRTHDAY!!

Just five years older than me, you can imagine that we didn't always get along.  Which is often the case with siblings, I'm sure!  Though now we get along great, and are actually a lot alike.  Both artistic and musical, with similar senses of humor...I can always count on P to make me laugh!  His daily posts on Facebook are the main reason I keep my account open...and even when I'm having a horrible day, I can log on and see something he has written, and my day changes for the better.  So thank you, brother, for giving me something to look forward to each day, and for always making me smile! 

And in the spirit of great birthdays, I am posting this special birthday message because I know he will appreciate it, as the show 'Family Guy' always makes him laugh.  P, may you forever find the humor in life, and a reason to laugh!  And when you do finally get your cake, make sure to save me a piece...okay?  I hope you have a spectacular birthday on Friday, and for many years to come!

We Are The 99 Percent

If you have read my posts in the past, you are aware of the fact that I avoid the news like the plague.  There seems to be nothing more than story after story, which seem filled with negativity, ignorance and hate.  If you're lucky you get a two minute positive story at the very end, telling you about a child who raised money for a local cause...or a therapy dog that brings joy to the lives of the elderly.  These stories are wonderful, and they restore my faith in humans and animals alike!  Sometimes though, I am not able to avoid the negativity that is occurring around me, and some of it sneaks into my bubble...and I have to address it.  Sometimes I hear a story that makes me want to cover my ears while I sing "I CAN'T HEAR YOU...LA LA LA LA!!!" but I cannot make enough noise to block it out.  And today I heard one of those stories.  It seems that there has been a silent uprising and quiet protest to what is happening in this country with our economy, that has been occurring in many cities such as NY and Chicago.  People have been joining together for 'sit-ins' outside places such as Wall Street.  It is called 'Occupy Wall Street,' and despite the fact that there has been little-to-no news coverage on these protests, they have actually been occurring for about two weeks.  The people joining in are not violent protesters by any means...they are normal average people, who are tired of the constant daily struggle to survive.  People like you and me, who struggle to pay for mediocre health care, struggle to put food on the table, struggle to pay for rent/mortgage, gas, electricity...the list is endless.

I don't pretend to be an expert when it comes to politics.  The back and forth insults between parties; the mudslinging and the blame games that seem to accompany any political debate distract me and frustrate me.  So when I first heard about Occupy Wall Street, I asked some questions and did some digging.  What is obvious to the majority of the people in this country is that our economy is NOT WORKING.  Whether or not the numbers I found are completely accurate, is something I'm not sure of.  But I think I'm close...and I think the numbers are appalling!  As it is now, I have heard that about 90% of the money in this country is controlled by about 1% of the population.  That leaves 10%...and THAT money is distributed to the 99% of the population who are left.  Now if you are like me you may need to reread that statement, because it involves numbers (which also frustrate me,) and because it is completely unbelievable...though it is also very real!  What it comes down to is this: there are some very deep pockets stuffed with the majority of the money in America, while the rest of the people have pockets that are empty...and they are struggling...and starving...and homeless.  And the thought that this is occurring ANYWHERE, is innately, incredibly WRONG!

Do I begrudge anyone the wealth they may have acquired over the years?  Not really.  What I do have problems with are the tax breaks and incentives that were handed out many years ago to those with wealth, in the hopes that the people accepting these incentives would be putting money back into our country...by creating programs that benefited the greater good, and jobs that would be available for those willing to work.  That did not happen.  And despite the fact that our economy has ended up in the toilet, and hunger and homelessness continue to rise, the people who have the capability to make a difference are choosing greed instead.  A couple of years ago, Congress attempted to take those tax breaks back from those who had received them, such as the oil companies.    And our current financial situation is a strong indication of the results.  Would taking back those earlier incentives cause the former receivers financial ruin?  Hardly.  But greed is a powerful sin...one that can make you turn your back on your fellow men and women, and ignore the obvious suffering that goes on around you.  It breaks my heart to know that anyone would choose greed and wealth over ending the suffering of others, but it is happening as we speak.

Now, I am not attempting to use this blog as my podium to stand up and point fingers.  This is not my forum to persuade you to vote Democrat or Republican, or to convince you to side with Obama or speak against him.  I have heard the comments against him and the blame that many have placed on his shoulders, due mainly to the fact that he did not wipe away our financial struggle upon entering the Presidential office.  And quite frankly I do not agree...do I think he has done everything the way it should have been done?  No...I'd be shocked if a President like that even existed.  But I do believe that he took on one HELL of a job, and has been expected by many to fix issues that have been brewing, long before he took over.  Obama was not the one to create this giant ball of financial downturn, or the one who sent it rolling down the hill.  This ball has been gaining speed and velocity for years, making it very difficult to stop.  To give you an idea of just how large this issue is, and how fast that ball is rolling, here is a chart that shows just how much our National debt has increased over the years...and where it started.

So before we point fingers; before we place blame, let's be realistic about where this issue started.  It does not all lie with our current President, who has barely dipped his toes in the water.  The situation in America has been ongoing for a very long time, and maybe it would be more beneficial to stop worrying about where to place the blame and start being realistic about how to fix it...TOGETHER.

But first we have to stop and listen.  ALL of us need to stop and take a good, long look around, and open our eyes to see who stands beside us.  No matter what walk of life you may come from, or social class you may belong to...no matter how much or how little education you may have had, it no longer matters.  PEOPLE matter, and the people are suffering!  And we are the 99 percent of the population who are tired of suffering, and just want to be heard.  The stories may break your heart, but these are the stories of your loved ones...these are the stories of America.  Greed must NO LONGER take precedence...happiness of the few should no longer be put above the suffering of the many!

If you want to listen, and if you would like to share your own story, then check out this site:
log onto http://wearethe99percent.tumblr.com/ to read the many entries of people just like you and me.  They are powerful, and heart wrenching, and you may want to have tissues nearby.  But like any serious issue it is well worth the read.  My own story posted below, will also be posted on this site...and I hope that one day soon we will all be heard!

I am 39 years old, and I receive disability because I was born with a Peripheral Neurological disorder called Charcot Marie Tooth Syndrome.  I didn't always receive SSD...I went to college and earned a dual Masters in Special Education and Literacy, because I wanted to help children with disabilities succeed. 

After college I worked my butt off for seven years as a teacher, until I suffered an injury, and my body could no longer keep up.  I had to declare bankruptcy, and give up an occupation I put 15 years into, all because of a back injury that took 30 seconds to occur. 

I thought college and a career was what I was supposed to do...for the past few years I have questioned that decision.  Now I work 20 hours a week as a secretary because that is all my body can handle, and there are many days it can't even handle that.

I have no retirement or pension, and have no idea what my future holds.  SSD doesn't cover my rent and other expenses, though I know I am lucky to have it at all.  The small income I make doesn't even come close to covering my medical costs, though I know how fortunate I am to even have a job.

I am one of the lucky ones.  I have parents who love me, and if it wasn't for them I don't know where I would be.

It used to be my dream to help disabled children face the obstacles I have faced.

My current dream is to be self sufficient, so my parents don't have to worry anymore.

I am the 99 percent.

http://occupywallst.org

http://occupytogether.org

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 accumulated...it 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 comparison...you 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 K...in 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!

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 much...in 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 have...it 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 dilemma...my 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: http://wwwherbalhealer.com.  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!

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