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: http://artdecure.org/ 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!

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! 

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 me...like 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.

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 prune...by 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 yourself...you 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 that...an 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!

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:  http://cmtnyus.wordpress.com/.   

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 grief...you 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 time...to just keep MOVING!

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 disabled...by 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 earth...so 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

Show Your Support!

My favorite store in Schroon Lake is the Town Store.  No matter how long I am at camp, I always manage to stop there before traveling back home.  It's not a chain, and it's not huge.  You can't get every item there, and every visit is unique...as you walk through the different sections you can see the work of local artists and crafters.  Some items are not your style, and some make you dig down deep in your pockets to see if you have enough money for purchase.  The prices are not too high, and I never leave there without buying something...even if it's a simple piece of fudge.  Though most of all, the Town Store and other 'mom and pop' stores like it are not physically overwhelming.  I can wander through the merchandise on my own time without feeling exhausted by the size of the place or the amount of people in it, and my ears are not ringing from the noise.  The larger chain stores (although the cheapest prices may be offered,) can seem like the size of two football fields, making me tired before I even start walking.  And because of all the people running through the store who are desperate to grab the best deals in record time, I constantly need to be aware of my surroundings.  It is quite easy for a person who has CMT and limited balance to get knocked to the ground, in someone's frantic attempt to get $2 off a large tube of hemorrhoidal ointment.  I have learned the hard way to move to the side on occasions like this...for when someone is that desperate, it's best to just stay out of their way!

So let me tell you about my most recent experience to one of the large chain stores.  I went there specifically because I needed a new airbed for guests, and this store offered the best deal.  I had a few more items on my list, though luckily these were also on the same side as the bed...so I was confident that my trip would be a short one, with limited walking time.  Oh, ignorance is bliss...isn't it??  And so my story begins...as I park at one end, putting myself close to that entrance but away from the mayhem of speeding cars and crowds of people.  I make my way to the store only to find orange cones blocking my access, and a tiny sign stating that the entrance I chose 'will be closed till July 11th due to renovations'...sigh.  So I start making my way toward the other set of doors, approximately two football fields away.  Finally I'm there, though my relief is short lived as I enter and grab my cart...for now I'm at the opposite end of where I need to be.  Even bigger SIGH...and I start making my way back toward the 'bed and bedding' section on the other side to find my airbed and eventually gain my freedom.  Attempting to maneuver my way around the crowds of people, I can see the airbeds ahead of me...oh, thank GOD!    I'm so close, I can almost see myself back in my car and driving away!  And then once again my access is blocked...by a woman with her four screaming children, who (instead of watching her kids) is busy making a phone call to her BFF to share the latest news and gossip in her life.   **SIGH!!**  I carefully make my way around them, trying not to get knocked over by the kids who are now chasing each other, and grab my item as quickly as possible.  Working my way toward the 25 registers that line the front of the store, I grab the small items that remain on my list and get ready to stand in line.  But...wait a minute.   I stand near register 25, looking for one that's open...and things start to get a little blurry.   The only registers that are open are ALL the way at the other end, each with long lines stretching into the store.  Right about now, I realize I need to lay down...and consider for a moment doing just that, right on the floor.  I don't even care if I get trampled at this point, that's how tired I am!  But instead I straighten my shoulders, and start the long walk toward registers 1 and 2.  I choose what I hope will be the quickest line, and settle in for what will be a very long wait.  I think that's when the cell-phone talking woman with her running, screaming children get in line behind me...making me cringe as she continues her personal conversation and her kids start grabbing candy bars off the shelves.  Don't they sell GUNS here, in the hunting section? I think to myself...I should have grabbed one of those.

Finally, blessedly, I am at the front of the line.  I quickly pay for my purchases, and head for the door...freedom is so close I can taste it!  I try to wait patiently next to the cones that are also blocking half of the exit (remember the renovations?) and search for an open spot in the crowds of people streaming into the store.  Two young men are part of this crowd, the waists of their pants hanging precariously around their knees...displaying their fashionable choices in underwear.  Bleach...I should have bought BLEACH for my eyes.  One of these men is carrying a box, lightly held together with duct tape.  Just as I think I see an opening, a store clerk stops them and asks what is in the box.  Mumbling an answer they continue into the store, causing the clerk to stop them again and repeat her question.  As I skirt around them and run for the door one of the underwear-clad men starts yelling and swearing at the clerk.  Proving once again that a store like this one is just too big for me, and if I ever need another airbed it will be worth the extra $10 to get it from a small, quiet store...and possibly crucial to my very survival!

I shared this story because it's funny, and I love funny...especially if it's true.  That is the best type of humor--the true humor of life!  Though I also shared this story for another reason, as we head toward the July 4th holiday.  Many of us will be getting together with friends and family, and will be running out for those last minute items...hot dogs and buns, party favors, even barbecues.  Together we celebrate America and our freedom...with parties, fun and fireworks!  So when you are hurrying to grab those last few items to make your celebration a great one, consider stopping by that mom and pop store around the corner instead of driving on past.  During this time of economic crisis, the small stores need your support more than ever...their personal service is always welcome, and their prices may even surprise you!  So on this Independence Day, show your support for the small businesses of America...as they are what make this country great!  Happy 4th of July, everyone!