Thursday, December 22, 2011

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'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!

Wednesday, December 7, 2011

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 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?

Thursday, November 24, 2011

Happy Thanksgiving!

Wow, have I been in a funk.  A big puddle of funk, covered in tar and topped off with a level of heavy-duty duct tape.  Can't get any stickier or more depressing than that!  Since writing my last post on how I understood the reasons for my seven year 'review' for Social Security Disability, the ante was was no longer just the mere annoyance of having to fill out page after page of invasive questions.  As tedious as that was, I could get through it.  It was having to physically prove, through a set of painful examinations, that yes...I have CMT. name's Christine, and I have a peripheral neurological disorder.  (Insert friendly greetings and clapping HERE.)

It wasn't just the pain the exams caused me, which was pretty intense.  I think it was the compilation of everything...the pain, the embarrassing questionnaires, and the results that were reached by completing the exams.  Even though I live this life everyday with a disability, which can often become so routine and, well...mundane in the many little ways I need to function, for the most part I remain positive.  I have learned to laugh at my circumstances and at myself, because if you can't laugh at the absurdity of life, it can be a long and miserable adventure.  Though this past week it was all kind of shoved in my face...the routine, the daily struggles, and the physical changes I have gone through in the past few years.  Some of these changes I knew about, though many were surprising...and having to face up to all of that was difficult.  I was left feeling degraded, and no one should ever have to feel that way.

But now all of that has passed, and Thanksgiving is here.  I am working hard to find my positive energy again!  This holiday is about being thankful, after all, and realizing what gifts you have in life.  And though I may have a lot of challenges to deal with, I also have a lot to be thankful for.  Wonderful friends and family whom I can trust and count on, adorable furry kitties that keep me entertained (and busy,) just to name a few.  I also have the opportunity to use my artistic talents in a new way, to raise money for the CMTA...and that money will help find a cure for CMT.  And that's just awesome!

Though all of those things are big...what about the little things?  When you are evaluating your life and thinking about what you have to be thankful for, the big things easily come to mind.  Maybe that's why it's so easy to forget to appreciate what we have all year round...all of those little things we have come to expect as a part of life, and don't even think about until they're gone.  Food in the fridge, electricity and plumbing, clean water flowing from the tap.  I am thankful to have all of those things, and if any one of them were missing, it would be a shock!  Though for many, their struggle IS living without those daily conveniences that blend into the background for a lot of us.  They may not have food to eat, or clean water, or even a roof over their head.  This is the time of year where most of us try to remember those who are less fortunate, and give thanks for the gifts we do have have, no matter how small...though why limit those thoughts to one day a year? 

Now don't get me wrong--by knowing there are others out there who have struggles, that does not make our own problems any less important...they are still real.  When I was stuck under the duct tape, a good friend helped me realize this, and I was able to get myself unstuck a little quicker!  Knowing what others may face doesn't diminish our own just helps us recognize what we do have in life so we can be thankful, and not take these gifts for granted.  As Thanksgiving day draws to a close, I am keeping all of my friends and family close to my heart.  You are all a big part of my life, and it would be a lot harder to live it without you!  I hope everyone had a wonderful Thanksgiving with their family and friends like I had...and that you all found something in your lives to be thankful for!  


Tuesday, November 15, 2011

Let's Talk About Monotony

That is a complicated word!  There are stressful times we all experience when it seems like the world is spinning out of control, and we pray for boredom...and the chance to breathe.  A little monotony goes a long way, when life is throwing you curve balls and you forget how to duck!

There are other times when life is calm, which can be wonderful.  Until you realize that each day looks like the day before, and the day before that...finding that perfect balance between lack of control and too much control can be hard to achieve.  I'm not sure if it's possible to reach that state all the time, but striving for that balance is definitely a good goal to have!  Why has this topic even come to mind?  I guess there's a variety of reasons I'm thinking about this today...I have been working hard on paintings for the CPO Starry Night gallery, which has provided me with new tasks and goals to occupy my mind and time.  Which has been great--because I've learned over the years that having Charcot Marie Tooth disease, with all of it's limits and adaptations, can sometimes cause you to get stuck in your routines.

And I'm not even sure if routine is the proper word for it...usually if you engage in a specific behavior, it's by choice.  What time you get up in the morning, where you stop for coffee on your way to work...the types of foods you buy at the grocery store.  Some of our behaviors are dictated by circumstances; for instance, you might not buy milk at the store if you are lactose intolerant.  But a lot of our routines are chosen because they work well for us, and make us happy and comfortable.  I have made many personal choices in my own life too--don't get me wrong!  I try my best to eat healthy because I figure I have enough physical problems to deal with...I don't want or need to add diseases such as Diabetes to my list.  And then there are times when nothing tastes better than marshmallows, and if I don't get my hands on some soon, I can't be responsible for my actions!  Though it's my choice to buy a bag, and many times I make the right choice and leave it on the shelf.  I have control over that particular situation. (Well, mostly.)

But having CMT can take a lot of your control in life away.  I am sure it is the same for any disability, though the specific situations and levels of degree may vary.  And although finding routines that make you happy may be a good thing, it can be difficult to accept them when you have no other choice.  I've had to think a lot about my routines lately, because I'm going through my seven year review of my Social Security Disability case.  This is a normal thing to face, though it can be a daunting task to complete a 16 page questionnaire filled with personal questions.  And I do mean personal!  Understandably, SSD wants to know if I am able to dress myself, cook my own meals, and clean my own apartment.  And this does make sense--there are many daily tasks which are very difficult for me due to hand control and muscle loss, and I've spent a lifetime adapting how I accomplish them...and there may come a time when I can no longer do so without personal assistance.  Where it gets hard is when I have to explain (in detail,) how I function in a typical day...from the moment I wake up in the morning, to the moment I go to sleep at night.  Now, just take a second and think about that one...think about how many minute little tasks you do in the bathroom alone.  Frustrated yet?  A little embarrassed??  And I have to be as detailed as I possibly can...from my difficulties in taking a shower, to my ability to use the toilet.  Need another second?  I sure do!

Beyond sharing embarrassing personal details not suitable for parties, it brings the focus on just how routine my actions have complete such simple everyday tasks that most people might not even think about.  From the way I have to hold my toothbrush so I don't drop it, to having chairs and stools around the house that I can sit on to do things such as change the litter boxes.  And it's a reminder of the usual clumsiness I deal with, because I'm tired...the amount of things I manage to drop in a day is astronomical!  All of it is a lesson; from learning when to stop and rest, to changing how I fill the coffee maker so I don't end up with a giant puddle on the kitchen floor.  But sometimes, DAMMIT...I just want to brush my teeth in the normal way!  Sometimes I just want to carry the water for the coffee with my right hand while I grab breakfast with the other.  I'm a rebel!  And I have my moments of recklessness when I attempt the impossible, because every so often I just need a break from the monotony...a change in my routine.  And in most cases...the results just aren't pretty!

C. S. Lewis once said:  Experience: that most brutal of teachers.  But you learn, my God do you learn.   I've certainly had a lot of experience in routine, and how to adapt my behaviors when I need to...sometimes it feels like the lessons are coming out of my ears.  And I keep on facing these lessons, because what choice do I have?  When I don't accept what I've been taught, I end up sitting on a stool in my kitchen, cleaning up spilt oatmeal and wet tea leaves...muttering words that are ALSO not suitable for parties!  I tried my best to convey this frustration when filling out my questionnaire...and I did manage to keep the swear words to myself.  And now that I am done, I choose to focus on my painting.  When I start at the beginning there is a vision, though sometimes my art takes a different path...and until I reach the end, the result remains a mystery.  Because a little mystery goes a long way in breaking up the monotony, don't you think?

Friday, November 4, 2011

A Great Day!

Age is strictly a case of mind over matter.  If you don't mind, it doesn't matter.
Jack Benny

And it doesn't matter to fact, I'm glad!  I turned 40 today, and I couldn't be happier!  It's funny the different reactions I've been getting the past few weeks, when people found out the big "4-0" was coming up.  I heard some "Congratulations!"...a few scattered "Wow--you don't look 40!" but mostly I heard "Oh..." accompanied by looks of pity.  Pity?  Why would anyone feel sorry for me??  I do understand that turning certain ages can be...unsettling, and for many is perceived as the end of something.  Though I don't see it that way.  There have been many times throughout my life when things have ended for me, or at least changed of yet they've never fallen on my birthday.  And I haven't exactly experienced the normal milestones that most people experience.  For instance, in a lot of cases turning 21 is a big means that FINALLY you are old enough for everything, except maybe AARP.  You can drink, in PUBLIC, and not be faulted for it.  Yippee--WHOO-HOO!!  My 21st year, however, passed in a whisper...I'm severely allergic to alcohol, so to celebrate I took my art school friends out to a local bar and bought them drinks...then I drove them home.  I admit--not very exciting in the traditional way!  I still had fun...enjoyed some laughs.  And drank a Shirley Temple!

The milestones I remember the most usually have to do with other things...the day I graduated from graduate school, my first teaching job and students, holding my younger niece in my arms on the day she was born.  I have other milestones as well...the age I was when I was finally diagnosed with CMT(25), the age I was when I was hurt and had to give up teaching altogether (32)...the age I was when Scout passed away (39.)  Not all milestones are happy ones to cross.  But they all lead you down your path in life...some spots are just a little rockier!  Well, this year on my birthday I created another memory to file away with the others, and it's a good was our Art de Cure gallery installation to raise money for CMT.  I must say--the gallery is impressive!  And as of today, the art pieces displayed throughout the space are for if you are interested in some original artwork created by regional artists, stop in at the CPO (Clinical Prosthetics & Orthotics) building: 149 South Lake Avenue in Albany NY, and take a look!  I am proud to have my art pieces hanging along side the work of many talented people...and I am excited to see just how much money we will raise for the CMTA.  We hope to see all of you at our upcoming event on December 2nd, from should be a great time!

And last but not least, let me thank each and every one who has donated an item for the event...and I know there are still more coming, so let me thank you in advance!  So far I have managed to collect 14 different donations such as quilts, hand painted items and jewelry...and one donation was actually sold today, starting the ball rolling to reach our $15,000 goal.  That was donated by my very own mother, who made several infant blankets and hats. Thanks again, mom!  And if you are a regular reader of my blog you probably have noticed that I don't use names when talking about the people in my life...I use abbreviations.  To do so now in order to thank everyone (including my mother) for their generosity, would make me sound like I forgot my alphabet!  So I will dispense with the K's and C's, and just send out a big THANKS to all of know who you are!  It's for a great cause which is very close to my heart, and your help is very much appreciated!

So overall it was a GREAT day as I turned 40...and I have some good memories to think upon in times to come.  Life is truly a gift, no matter what age you may be...and even though some birthdays can be about as pleasant as getting a box of irregular tube socks,  other birthdays are as shiny as diamonds.  I try to see the 'diamonds in the rough' each and every year, and will attempt to do so as long as I am able.  And when I can't find the shine?  Well, I'll just yank my tube socks a little higher, and keep on searching! 

Saturday, October 29, 2011

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:  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 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!

Thursday, October 20, 2011

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 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'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 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 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 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, who could argue with that?

Tuesday, October 11, 2011

Just Days Away!!

Another birthday is on the horizon...and no, it's not mine!  But it's just as wonderful, and just as 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!

Sunday, October 2, 2011

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 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 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 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 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 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.

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!

Tuesday, August 23, 2011

Coming Soon to a Computer Near You!

In case any of you out there are wondering where I disappeared to, I just wanted to write a quick note to let everyone know that I have been experiencing MAJOR computer problems!  My personal laptop took a vacation full of obstacles and danger...and picked up some viruses along the way.  Kind of like when you fly to Tahiti, a fellow passenger is sneezing and coughing from the row behind you, and the next day your head is so filled with phlegm you can't think straight.  Then the airlines lose your luggage, and you spend a week on the beaches of Tahiti blowing your nose, and wearing the same outfit you flew in with...including the underwear.  Yeah--kind of like THAT.

Luckily my laptop is being fixed as we speak, the viruses are getting erased, and hopefully I will be up and running at my full potential within another week.  I have much to tell you, though will faithfully wait for the return of my computer before I share.  Right now I am typing this in my parent's office...and although they allow me plenty of access, it's just not the same!  My laptop is much more comfortable on my hands, and I can put on my favorite pair of monkey pajamas and type away.  (I'm not too sure my parents would appreciate the outfit!)

So I hope you will have patience with me, dear readers.  I promise to be back soon with more excitement...guaranteed to knock your socks off!  Well, okay--maybe you'll still have your socks on by the end of it, though I think at least it will make you smile! 

Thursday, August 11, 2011

Welcome to the Family!

Introductions are now in order...we have a new addition to our family!  Yes, the fur continues to accumulate in my apartment, and despite my allergies I couldn't resist adding some more.  A little over a week ago I brought home a handsome, sweet one-year-old cat named Chili.  (As in chili pepper...and Mexican food...and margaritas!)  The name I have since learned, fits him to a tee...he is a beautiful deep orange and white cat, shy but playful, and loving once he gets to know you.  Five minutes in his presence and you can't help but think of happy things, like kicking back with a big margarita in hand!

Now, some people may think it's way too soon to bring a new cat into my life, so shortly after losing my darling Scout.  I struggled with that myself...and then my friend K pointed out to me that I'm not replacing her.  NOTHING could ever replace her...Scout was one of a kind.  I'm choosing to open my heart to another cat who needs a home, and allowing myself to love again.  And K was absolutely right!  Is there a risk?  Always.  Though as they say...a life without love is no life at all.  Do I feel any less sad about Scout's passing?  Not really, though I'm managing my emotions a little better.  I still run into those moments, however, that sneak up on earlier today when I was washing out Shay and Chili's dishes.  As they are both boys, they tend to be messy and not 'clean their plates' all the way, so there are always scraps to wash out.  I was doing just that, and thought to myself how different they are from how Scout used to be--she would just about lick the flower pattern off the ceramic, she was so thorough!  And then I spent the next 10 minutes crying.  You see??  Even something as simple as cat food and messy dishes can bring on the tears!  And that's okay...tears are normal.  And I'd rather risk having a life full of them, if it lets these sweet, funny and furry little beings into my heart!

The other big reason I adopted Chili was as a friend for Shay.  He has been very lonely since Scout passed away, and really is such a nice, friendly boy...he needed a companion.  And though there were a few hisses and some tail-poofing at first, they have both acclimated well to the situation...and are now spending a good deal of their day doing what cats do best--ignoring each other!  And then all of a sudden they will have bursts of feline energy, and run pell-mell throughout the apartment chasing foam balls and batting them around.  Once in a while a paw comes up and it's a cat that gets batted...they are boys, after all.  Though I can safely say that there is no blood or fur flying, which makes me breathe a little easier.   Chili has definitely fit into our home nicely, though to be honest I haven't slept much since he joined us...his most productive playing/talking hours are from 2:30-3:00 a.m., again at 4:30 till whenever, and often around 6a.m.  And Chili is a TALKER!  His meow sounds a lot like "Hello?" and he says that word a lot.    Never fear dear readers...I have ordered some special ear plugs, and hope to be sleeping through the night--oh, sometime around next Tuesday.

Tuesday, August 2, 2011

Growth and Change

I have to share a progress report of how my squash and pepper plants are doing, as I have managed to keep them alive and have become quite the proud gardener!  The pepper plant continues to flourish, and there are so many peppers on it the number is hard to count...right now, I'm just waiting for them to turn yellow so that I can pick them.  My yellow squash plant is flourishing as well, and I was actually able to pick my first squash.  As any proud parent of a bright yellow squash, I of course took photos before completely devouring it.  As you will see, it's about the size of a pencil.  Isn't it lovely?

Tasted good, too!  My thumb is turning greener by the minute, the old black mold has been washed away...and I have become a gardening Goddess!!!  Plants grow before me--larger and riper with sunlight and water...and the gentle loving touch of my gardening, Goddess--like fingertips!!  HAHAHAHAHAHAHAHA A-HAHAHAHA!!!!!  haha...ahem...sorry.  Got a little excited there, for a minute!

As with plants, there is constant growth and change throughout life...some for the worse, and some for the better.  When it comes to my plants I have learned the signs that show me it's time to cutting off the dead leaves that take up space, or the huge green ones that suck up all the nutrients so that the smaller, weaker leaves can't get any.  Living with daily challenges also teaches you how to recognize these signs when it comes to learn which activities are easy, which ones are hard but adaptable, and which activities you need to give up doing all together.  In other words, you learn how to prune your life (just as you prune your plants.)  That can really be hard!  No one enjoys giving up activities they like, and even the daily chores you may despise aren't always easy to give up (when you're being forced to because of inability to complete them.)  And if you aren't paying attention to these signs, often the little changes that can add up to so much get overlooked until one day the differences slap you in the face.  Having CMT can sometimes be like that, as tiny little changes can cause little 'problems' throughout the body that sometimes add up to HUGE changes in the future...that are even harder to deal with.

I recently attended our latest CMT support group meeting, which was a very informative one.  Dr. Micheal Shy, a Neurologist from Detroit and an expert on CMT came to speak with us.  Yes, I said expert on CMT.  Can you believe it??  Thank you Lord...they do exist!!   Dr. Shy gave a very in depth presentation on the many types of CMT (I won't go into all of them right now as it can be confusing,) symptoms of each type, therapy that is helpful--and he also spoke of the current research that is being conducted by the CMTA STAR program.  We were able to watch videos of patients Dr. shy has worked with who display different types of CMT...many of the symptoms these videos presented were familiar.  I found myself nodding my head during some of these and thinking Oh, yeah...I have that.  Though other videos demonstrated the types of CMT that aren't so common, where the patient might walk normally and not display any outward symptoms...but then suffer sudden problems such as numbness throughout their entire arm for many days, because they changed a light bulb and held their hand up in the air for too long.  If I thought my life was difficult having to adapt to the way I do daily things, and live with the changes in my physical being that stick around...well, I can't even imagine having to adapt to sudden and severe symptoms that could show up at any time!  I'm sure you'd learn certain things you could and couldn't do...but there would always be those new issues that would suddenly arise.  It shocked me to see that, yet also taught me how lucky I have been.  I am not a person who is good with surprises...I'm a planner.  And if I couldn't have some plan on how to adapt to the changes in my life...well, that's just too scary to contemplate.  When those moments come up in my future causing me to give up another task I enjoy (and I'm sure there will be more of them,) I will be upset...I'm not going to pretend otherwise.  Though I hope after learning what else is out there that I WON'T have to deal with, those moments will run a little smoother.

At the end of our meeting I went up to shake hands with Dr. Shy, and told him he was the first neurologist I actually liked.  He laughed, and although he may have left there thinking I was strange, it had to be said.  I haven't had the best luck when it comes to dealing with people in that field of the medical community, so it was nice to have a different experience!  It gave me some new things to think about, and new information on CMT.  Having this disease doesn't give you the green light on CMT knowledge, even though you may rate high in personal experience.  It is good to have my eyes opened a little wider about what I'm facing, and possible changes for the better that may be in my future...and I'm waiting with my pruning sheers for whatever comes my way!

Sunday, July 24, 2011

One Step at a Time

I think my brain took a vacation, without my consent.  That is, I'd realized (since Scout's passing) that it wasn't working like usual...and I guess that's normal, though incredibly frustrating!  I even attempted to start my weekly post a few times, and after sitting in front of a blank screen for 20 minutes or so, finally gave up...the words just weren't there.  Usually stories are running through my head just waiting for my hands to touch the computer keys so they can come out, but alas...the past couple of weeks, there has only been white noise.

Things are slowly getting better, though I still have my moments...I've had to adapt to my new found confusion by leaving myself notes such as LUNCH! taped to my front door handle, to remind myself to bring a lunch to work.  Quite often I've been at a complete loss after wandering into my bedroom, because for the life of me I couldn't remember why I was there.  The worst happened just a few days ago as I was getting myself breakfast, and grabbed a bowl for my cereal.  At this point I had already fed Shay his morning meal, and he was lounging in the sun.  Before I knew it, instead of cereal I had scooped a big dollop of his cat food into the bowl instead.  (Luckily I realized what I had done before I ate any...that certainly would have been a rude awakening!)  And so it continues, one step at a time.  Shay and I are helping each other get through this change and cuddling as much as possible...and as long as I remember to open the cat food cans when it's time to eat, he's fairly happy!  

As I attempted once again to write a post for this week, I realized I did have a story to share...though with everything else going on it had taken a back seat.  More progress has been made on the CMT front, I am happy to report!  A few weeks ago I met with Beth Wright--Community Liaison for Senator Roy McDonald, to discuss this disease and ask for a resolution from the NYS Senate to have September designated as CMT Awareness month.  Though the meeting is somewhat hazy for me (most of my mind was at home with Scout,) I believe it went well...and I discovered that when you have something else you're worried about, normal fears and anxieties tend to go out the window!  Thankfully my friend and CMT group leader M was able to attend, which was very helpful...along with my father, who set up the meeting.  Together we were able to provide insight on this disease and bring to light our struggle to raise awareness.  Ms. Wright asked many questions which were wonderful, and she truly seemed interested in hearing what we had to say about CMT.  I must admit I don't remember much about what occurred, other than the fact that I was able to answer the questions asked of me...and I didn't make a fool of myself, which is always a good thing.  And M was able to share our attempts in the past to raise funds for CMT research, and the difficulties in this undertaking...after all, it can be quite a struggle to raise awareness and money for a disease that many people have never even heard of!  Charcot Marie Tooth disease is not yet recognized at the same level as other neurological diseases...and we still have a long way to go.  I'm sure anyone reading this has heard of Multiple Sclerosis, Muscular Dystrophy and Parkinson's disease, and yet many of you may not have heard the term 'CMT' before reading this and other blogs that discuss it.  One statement that M made at the meeting as she explained how difficult it can be to raise money for research, is something I will never forget.  She said "We shouldn't have to sell baked goods to raise money and awareness for CMT."  And she's right.  Thank you, M, for coming to the meeting and for saying that--it really hit home with me.  If any of my readers would like to check out another great CMT blog and learn even more about this disease, go to:   

I can imagine the many steps we will have to take to achieve the recognition we so desperately need (especially within the medical community,) so that people with CMT can be properly diagnosed and care/treatment can begin.  Sometimes that journey seems very long!  Though as the saying goes, "A journey of a thousand miles begins with a single step" Lao Tzu.  And it will never be completed without placing one foot in front of the other and taking that first step.  I guess that is true with any path you follow in life whether it involves a personal cause, a dramatic life change, and even just have to keep taking that next step, and continuing on your way.  So that is what I will keep doing, even if I have to leave myself a note from time to just keep MOVING!

Monday, July 11, 2011

In Memoriam

This post is dedicated to my beloved cat, Scout, who passed away on July 7, 2011.  She was and always will be one of the brightest spots in my life, and I miss her dearly!  Writing for me as always, is a source of healing...and although it is very hard to write this and think about the great loss I am feeling, it is also necessary.  Above all, Scout deserves my tribute...she has been a big part of my life for so long, and has certainly earned a place in my heart.  So as a last memorial to her, let me share a few things about my sweet little girl!

As I've mentioned before, Scout was a bad reaction to anesthesia when she was four years old.  I first got her when she was only four weeks old, so I was able to watch her grow and change for 13 beautiful years...before her disability, and after.  Scout taught me quite a few things throughout her life.  One of these things was to never stop fighting, no matter how scared you are; no matter what changes may come.  She was definitely a fighter, and as her little body changed and daily tasks became more difficult, Scout continued to rail against the changes.  She taught me that giving up is not an option...when life throws more at you, you adapt and keep moving.  I've had to do quite a lot of that in life as my own physical changes have continued to arise, and I always looked to Scout as an example of what was possible.  She never gave in...even when it became impossible for her to walk like a normal cat.  Scout was never a normal cat...and so instead of giving up when walking got harder, she learned to hop like a rabbit.  When hopping got too tiring to do for very long Scout learned to rest in between, and take breaks...and sometimes would drag herself along to get where she needed to be.  I realize how this sounds; very upsetting and disheartening...and yet, Scout was happy.   She had no time for depression.  She was the first one to greet me in the morning with a meow that spoke volumes..."Good morning Mommy!!  WHY aren't you up yet, putting food in my dish??" and the last one to meow a "Goodnight, Mommy...I love you!"  And no matter where I was in the house Scout would make her way there to be with me, talking to me and keeping me company.  Probably the biggest lesson Scout taught me was this: that love can truly be unconditional, if only you allow it to be.  She always looked past my physical being, and didn't care that my body didn't work like it should...or that I might not always look or feel my best.  Scout's tiny body and big meows spoke volumes to me, and she continued to show her love for me in a hundred little ways.  I in turn saw the changes in her physical self, though I also saw that tiny little face with those bright eyes looking back at me.  Despite the many changes, she couldn't have been more beautiful to me, and I loved and adored her!

Those last moments with Scout are ones I will never forget, and I pray that my mind proves solid up until my own last moments on this that I may hold onto my memories forever.  As I sat with her I tried to convey all the years of laughter and joy she bestowed upon me, so she would realize what a gift she was...I spoke to Scout about the first moment I saw her, when she was so tiny she barely fit into my hand.  I told her how much laughter she brought into my life with all the crazy things she would do as a young kitten, such as eating the carbon heads off the matchsticks I used, to light candles at night...after which she would stuff the sticks under my area rug.  There were about 50 headless sticks under there before I realized what was going on!  Story after story I shared, letting Scout know how much she was loved, and how much I would miss her.  Most important of all I let her know, tearfully, that it was okay to leave...and finally, silently, she was gone.

I always thought that the most precious moment in my life was the one where Scout walked into it, but I was wrong...what was even more precious was being able to hold her one more time, at the moment she stepped out of it.  I will always cherish that last chance with her, and be forever grateful for what was truly a gift.  God bless you, sweet baby...for you are now free from all your challenges.  I know you are running and jumping now, happy and finally at peace.  Thank you so much, Scout, for being part of my life...I love you, and forever hold you in my heart!

September 1, 1997 ~ July 7, 2011