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

Saturday, July 2, 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 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 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 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 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 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 they are what make this country great!  Happy 4th of July, everyone!