Monday, April 25, 2011

Know Thy Limits

Three little words that seem so easy...yet are so DIFFICULT!  You would think living with CMT or any other disability would be enough to teach a person what they can, and can't do at any given time.  Hmmm...maybe it IS enough for most people, and I just continue to be stubborn!  I still end up with those pesky back pains, because once again I did something I shouldn't have...which is one reason this post hasn't been written until now!

I struggle with having to say no to gets tiring having to think about all those tiny details, such as how much standing will be involved, how much sitting, how much walking.  What are the chairs like?  Will there be a chair??  Do I need a pillow to sit on???   AUGH!!!  Those nagging questions get old, real fast!  And in most cases I do say no, because there are just too many issues and I know from experience what the consequences will be...but sometimes my stubborn Irish sensibilities rear their ugly head and I just have to say yes--because I really want to go out and enjoy life with friends and family!  If I didn't say yes from time to time, I would have missed seeing my beautiful nieces on Easter Sunday...and that's an occasion I just didn't want to pass up!  And then there are other moments that can cause me to be stuck in bed for a few days, such as new exercises in the pool that I think I should be able to do...and actually can't.  (Note to self: if your butt keeps bobbing up to the surface while you're trying to spin your legs in circles, chances are it's not the right exercise for you!!)  After all this time I've been going to pool therapy, I think I've gotten cocky...I've made such great progress with it, and it certainly keeps me going!  So I tend to forget that I'm there for a REASON, and sometimes I just expect too much from myself...I need to know my limits, but sometimes the limits get blurred.  Or my bobbing butt gets in the way!!

So despite the back pain, I went to my CMT support group meeting on Saturday--which I was not going to miss, even if I had to stretch out on one of the tables to be there!  We had the Capital District Center for Independence, Inc. come to talk to us about the different programs available in NYS.  I must admit, I'm a bit wary when it comes to assistive programs...because it has been my experience in the past that I don't tend to qualify for things.  You would think that being disabled gives you a one way ticket to qualification, but it doesn't.  I collect SSD, but I still am able to work 20 hrs per week...that takes me off a lot of lists.  I have no children...that takes me off even more.  Having two Master's degrees wipes me off the last few, and gets me some pretty strange looks...if and when I actually try to apply for some assistance I don't currently have.  So when the presenters from CFI started to talk about programs such as ACCES-VR (adult career and continuing education services-vocational rehabilitation) I was sceptical.  There are so many 'limits' I have to follow when I do work, and it seems pretty improbable that I could find another job that would allow for them.  I've searched for work that I could do from home, but all I am able to find is telecommunications (which isn't appealing.)  And quite frankly, those words 'continuing education' make me a little sick to my stomach...I don't want to have to go BACK to school in order to be trained in something else.  I have plenty of training already!

And so, with my unsettled future looming overhead and the desire to be prepared for any circumstance, I started thinking that maybe one of these presenters (with all his infinite wisdom of vocational rehab) might have an answer for me.  And with a little prompting from another group member, I decided to corner him on the break!  I explained my background, and attempts to find work that I could do from home...and my utter failure in finding any that didn't involve something unpleasant.  After all, my brain works just fine (on most days!) unlike my body--which leaves too many questions unanswered.  "What happens if I get to a point where I can't even work part-time anymore?" I asked him.  "Isn't there anything I can do with my brain if my body fails me??"  And after he got over the shock of me swooping down out of nowhere while he was just sitting there, innocently sipping his coffee...we started to talk.  I'm not sure I walked away with any definitive answers, though I have some avenues to explore.  I remain a little sceptical until proven otherwise, but I'm willing to go down those paths and see what I can see.  Who knows?  Maybe I'll find something I can do that's more related to the training I already have, that actually PAYS...or a way to make this blog (which I love to write,) a lucrative activity.  Anything is possible!

For any of my NYS readers out there who may be in need of some vocational rehab, because your physical abilities have changed, it may be worth your while to contact the Center for Independence, Inc.  They have many other programs as well, from Advocacy within the community to home care...which allows the disabled and the elderly to remain in their homes (rather than live in nursing facilities,) when they can no longer handle daily activities on their own.  And thankfully, new programs have recently been put into place which allow people with Medicare to access these programs (unlike in the past, when you had to qualify for Medicade in order to be eligible.)  It's nice to know what your options are, if and when you may need some extra help!   So check it out: their website is  Good luck, and happy hunting!

Saturday, April 16, 2011

Mayhem and Memories

I'm not sure what to write about this week...usually a story presents itself, either through a serious topic that needs to be addressed, or because I'm stuck behind some dingleberry who's texting on his phone while driving.  Either way, a topic almost always appears!  Though not this I really had to ponder this one.  Finally, I decided to talk about a funny memory, from a trip to camp.  So grab yourself some hot chocolate, get comfy, and let me tell you a story!

I've mentioned before that Schroon Lake (where my family's camp resides,) is my favorite place on earth.  You just can't find a place more peaceful than that!  Up there I have no distractions, no problems, no stress...I can just BE.  I can sit on the porch with a book and the sunlight streaming through the screen, and I feel no need to fill the silence with noise.  If you can believe it, I don't even need the television.  No, really!  At camp, the silence doesn't bother's calming, and my mind finally relaxes.  It's also a favorite place of my two cats, though transporting them in the car for an hour-plus isn't always enjoyable.  I set Scout up in the back seat, which is covered in pee pads and towels...and I hope for the best.  Surprisingly enough, she's the easy one!  Once I manage to pry her claws off my arm and put her back there, she doesn't move...and the protective layers are mostly a precaution (mostly).  Shay, however, makes me want to pull my hair out by the roots.  I put him in a carrier (because the alternative is a frightening prospect!) and he proceeds to hook his claws into the side, and just HANGS there...crying the whole way, incessantly--and for the ENTIRE trip.  It's very stressful for both of us...Scout is the only one who successfully tunes the crying out, as she curls up and takes a nap.  Though once we've gotten there and entered the house, the smells and the quiet and the memories make us all decompress.  Shay stops being so jumpy, and Scout chooses her spot to continue her nap...falling back to sleep with a little purr.  They know it's a quiet, safe haven, where all creatures are welcome!

Okay...I'm making this place sound pretty magical, right?  Well, maybe it's time to tone down the magic a little bit and be a tad more honest.  When I say ALL creatures, that's not quite true...I guess I should say all humans and felines are welcome.  That's where my funny story comes in!  Years ago, I was at camp with my parents and Scout (Shay was not in the picture yet,) and we had been out all day...when we returned it was already dark out, and we settled in to watch a movie.  That night we chose Cast Away with Tom Hanks, which had recently come out on DVD...and though Hanks is one of my favorite actors, I was a little frightened by the plane crash scene (as I have a tremendous fear of flying.)  Okay...I was scared silly!  Cowering on one end of the couch under a blanket, I cringed as the Fed Ex plane started to go down.  Scout was on the other end, completely oblivious to her mother's anxieties, curled into a tight ball and fast asleep.  If you've seen that movie, you understand that this was the most intense part, causing you to sit on the edge of your seat (or cower under a blanket!)   There isn't much that could drag your attention away from the screen during this scene...other than the addition of a giant, gray flying MONSTER into the room.  Which is exactly what came in to visit us in our house at that particular, intense moment.

So you can imagine the screams!  As this flying monster started circling the room above our heads at the speed of light, I began screaming at the top of my lungs and so did my father managed to hold it together, and for that I give him credit!  My mother and I were so loud, Scout dove off the couch and hid under the heater...I fell to the floor and tried to burrow into it--while still screaming like a banshee.  My mother, to HER credit, did the motherly thing by diving onto the floor next to me and covering me with the blanket.  The monster was flying so fast it was impossible to tell what it was, though we were all thinking it was a bat...something I like only slightly more than airplanes!  My father ran to get a broom, to try and shoo the new addition into the back porch...and we soon discovered our visitor was a bird, not a bat.  WHEW!!!  (Don't think that made me leave the floor, however.)  My father and mother eventually managed to coax the frightened bird into the porch, and shut the door.  They watched while he flew in crazy circles, until flying out altogether...through the screen door which unfortunately had been stuck open.  I think when ALL the doors were finally shut and locked against any other intruders, was about the moment I stopped screaming and climbed back onto the couch!

After rereading that last paragraph I realize how ridiculous it sounds...though believe me, it's true!  It took Scout about five hours to find the courage to come out from under the heater, after all the mayhem.  And I still can't watch that movie without thinking about this Hanks develops a relationship with Wilson the volleyball, his only companion on that deserted island, I can't help it...I'm thinking about birds.  Which I love to watch outside my windows--but can't really handle when they're flying right above my head.  Though I have learned, if nothing else, to laugh at crazy situations from my scared as I was in the moment, it now brings a smile to my face and a laugh bubbles out!  Bats still scare the hell out of me, and when I get on a plane I still panic...but the memories that make me laugh at myself the most, make those things seem a little more doable.  I conquered no fears with this post today, nor did I reach any personal goals by changing troubling issues for the better...which is just fine; it's not necessary to do that every time.  Instead, I just smiled and enjoyed a memory...let's hope after my story you did the same!

Saturday, April 9, 2011

Future Goals

I am sitting on my porch in the is so nice out today (finally!) that I have opened the sliding glass doors and the screen door is in place.  Scout, my oldest, is curled upon her blanket in front of the screen, listening to the birds.  I mean, it just doesn't get any better than this...don't you agree?  Days like this make me feel a little calmer, and breathe a little easier.  All at once I shed my heavy winter skin, and it's like shedding an attitude...warmer weather and the sound of birds singing makes things feel less claustrophobic, and I just want to stretch my limbs and enjoy the sun on my face!

This past week, I've been shedding a lot more than my winter skin.  I have also taken the first steps toward facing some heavily worn fears...and working toward some goals in the process.  I have mentioned in past posts that September 19th-26th, 2010, was designated as CMT Awareness week across the country.  During that week, much money was raised for research toward finding a cure for Charcot Marie Tooth disease.  Though best of all, awareness of this condition was also raised...I know my own struggle to find a diagnosis for my symptoms was a lengthy one, and the thought that just one person in the same situation might be reached, was all the reason in the world to participate!  Though as much as I would have liked to sit at a booth for 9 hours, passing out information on CMT, I don't have the physical capabilities to do so.  So I did what I could...I hung a 'CMT Awareness Week' poster in my office, and passed out fliers to patients as I checked them out and rescheduled them for future appointments.  Some of them had little to no woman in particular was pretty belligerent, just from reading the poster..."Augh!!  I have to learn about some OTHER disease now??  It never ends!!" (I didn't give her a flier...I didn't think she deserved one!)  Many people asked about the poster and were interested in what I had to I focused on them, and didn't let the other attitudes deter me.  A week might not seem like a big deal--hardly any time at all, in fact...but it was the first time CMT was being recognized across the country, and given any sort of national attention.  EVER.  That week seemed as powerful as a year, and I was willing to do anything I could to help it succeed.

So what now?  Well, as I mentioned in my post Changes Are Coming  I have become part of a letter writing get the entire month of September designated as 'CMT Awareness Month'.  My first letter (featured in that post,) was written to Governor Andrew M. Cuomo.   There I made my first request, that he sign a proclamation to have the month designated nationally.  Now, that simple letter may not seem like much in the grand scheme of things...and writing comes easy to me, so a task like that one isn't daunting.  Even though some topics are harder for me to write about, I can sit here in the comfort of my own home--even in my pajamas, and write about anything.  No one sees me (except the cats,) and I need not worry about how I look or sound.  On Tuesday, that all changed!  I agreed to take that next step, and meet with Congressman Paul Tonko about signing his own proclamation...that took me out of my comfort zone a little.  All right, A LOT.  With my computer, I can write something and edit it until it sounds exactly like I want it to sound.  When asked a question by someone I've just met, let alone a figure in politics...well, that's a different story.  That's where the fear comes in--that whatever I say will end up sounding incompetent, and the person I'm trying to convince of my background and knowledge on any given topic will wonder why I even wasted their time.  I don't know when or where this fear began, but it's been one I've lived with for as long as I can remember.  I've done many things throughout my life to work through it, though the fear is still there, buried deep inside.

No matter what, I have to continue to fight against the discomfort, and take those risks...CMT awareness is just too important.  So I swallowed my fear and did what any good teacher would do...I PREPARED.  I knew when the meeting would be and my reason for going, so I created a portfolio on CMT with sections on the history of the disease, progress in research, and goals for the future.  At least I could give off the impression that I knew something about CMT...after all, I created this great portfolio, right??  Next I went shopping to make sure I at least looked the part of a professional woman, used to meeting with various political figures at any given time.  I would have been more comfortable in my well loved monkey pajamas, but somehow didn't think head-to-toe flannels with monkey heads and bananas all over them screamed Professional!   I studied that portfolio back and forth, and even had my friend M pretend to interview me...the first question she asked was "What is CMT?"  Should be an easy one, right?  Well, everything suddenly went blank in my head, and I got that 'deer in headlights' look on my face.  Eventually I pulled myself together and was able to answer all of M's questions...and beyond that preparation, there really wasn't anything else I could do except pray.  And so that's what I did.

The good news is I managed to keep my composure during the meeting, and luckily didn't have to answer as many questions as I expected...there was also no problem with my request for a proclamation.  The even BETTER news concerns that portfolio I created--it will be going to Washington with Congressman Paul Tonko, and the request will be made for a congressional resolution...designating September, 2011 nationally as CMT Awareness Month.  Only time will tell on that one!  As for the fear?  Well, I haven't completely shed it along with my winter attitude and attire, but it has gotten a little thinner...I'm not sure I will ever shed it completely.  But I will keep trying!  I don't have much choice, as future meetings are being set as we speak...and I will go through the same process for every one, in the hopes that each meeting gets a little easier.  The future goals of the CMTA are to raise money for continued research while raising awareness and understanding of this disease.  Those goals are also my own...and I will do whatever I can to make sure they happen!

Monday, April 4, 2011

What is Your Truth?

Okay...I said I would be dealing with a topic that was a little more serious, and I've been struggling with how to approach it.  Essentially it comes down to truth and honesty, those two little words that mean so much...and are often crossed.  How far they are crossed depends on the situation...I mean, let's be honest with ourselves.  We've all told our share of little white lies; we've all had those moments where we have tried to excuse our actions and our behavior, or attempted to explain the actions of others--it's human nature.  I've had those moments as well--I'm no saint.  To recognize these moments and try to admit to your failings rather than excuse them doesn't make you a saint...though it means that you are taking more responsibility for yourself, and growing as a person.

But what about the more serious issues that stretch beyond the little white lies?  As truth and honesty are personal things to each individual, so is the distance you are willing to cross when you start to move away from them.  This was one of the thoughts that was running through my head as I sat in the Social Security Disability office with my father a few weeks ago.  The reason we went was to pick up a form that SSD had not mailed to me, so I could complete my 2010 taxes.  It's never a fun experience to go there, and something I try to avoid if at all often requires a lot of sitting, a lot of waiting, and a lot of patience.  Though I had exhausted all my other options, such as attempting to get the form on-line...which wouldn't work.  I spent quite a bit of time using their automated phone system to have the form mailed to me, and that just wasn't happening that meant a trip to downtown Troy!  Luckily it was a quick trip, and we didn't have to sit and wait for very long.  And my father went with me, which was very generous of him...I would have gotten lost otherwise!

So there we were, long enough for me to notice something quite we were waiting to be called, our number clutched in my hand, I glanced around at the other people in the room.  And it struck me at that moment--I was the only person there who had a disability you could actually SEE.  Not one other person in that room had braces, or a cane, or a prosthetic limbs, no adaptive equipment that I could find.  This WAS the Social Security Disability office we were sitting in, right?  Now, I am not claiming to know the story of every other person in that room...and it wouldn't be fair of me to say that I did.  There are disabilities that can be quite debilitating such as mental issues or heart conditions...and those are the issues you can't always see.  Some of those people might have had such issues going on in their lives, which qualified them for SSD and/or SSI (Social Security Income.)  I can believe that...though ALL of them?  There were about 20 other people there of all ages, waiting their turn.  It just strikes me as funny that an office dedicated to running government programs such as these, would have at least a FEW people with more visible physical struggles, sitting in the waiting room...this is by no means the first time this experience has happened; in fact, I can't remember a trip to this office that was any different.  And I find that very odd.  Something about it sits a little funny in my stomach...and as I maneuver my way through this life, it often feels like the disabled population is not fairly represented.  I guess I expected things to be different in the Social Security DISABILITY office.

Should this bother me so much?  Maybe's possible I'm getting more upset than I need to be.  Though I can't help how I DOES bother me to think that some of the people in that waiting room might not have had a valid reason for being there.  I know it shouldn't even concern me that there are people out there who abuse the system, and collect disability payments and other forms of assistance when they don't truly need them.  It's dishonest, and it's wrong, but as long as I know what my own truth is and I'm responsible for my own actions, it shouldn't matter what other people do, right?  Do I know that any of those people waiting in that cramped little room fit into that category?  Of course not...but I know people like that exist.  I learned that the hard way, when I fought to win my own SSD...and it was and still is a hard pill for me to swallow.  My lawyer was very blunt about the process when I began that battle, that I was in for a long fight...and no matter how valid my claim, I would most likely be denied and have to wait for an appeal.  And he was right.  It was an embarrassing and humiliating experience, as I sat in a room in front of a microphone, facing four people I had never met...and having to talk to these strangers about all the physical things I could no longer do (and even the things I could NEVER do).  I had to admit that even though I had worked my BUTT off for seven years within the school system, for the next two years (at least,) I couldn't physically work at all...per doctor's orders.  I felt like a schmuck!  And I knew the probability of getting that denial was a big one, and I was petrified...I had lost the occupation I had put 15 years into (college and teaching,) in the short span of about 30 seconds, just long enough for my back injury to occur.  And my future was very frightening!  I was determined to be the person who walked out of that hearing with these strangers' acceptance...surely they would see that I wasn't faking?  I wore braces to walk, for goodness sake!  At one point I even offered to take them off and try to walk around the room without them...I was THAT desperate.  And they were not impressed.

It took me a lot of years to accept that my SSD hearing really had nothing to do with me.  These four people had made their decision before I ever walked into the room...what I said or did really didn't matter.  I remember asking my lawyer that often unanswered question, "Why??" when I ultimately received that denial in the mail...and I almost wish he didn't give me an answer--because sometimes there are just things I wish I didn't know.  What I was told was this: the process is such a difficult one because of all of the people who take advantage of it...people who truly aren't disabled, physically or otherwise, yet walk away with money in their pockets they shouldn't have been given.  How are they able to do this?  I have no best guess is that for them, that line of truth and honesty is blurred.  And I can only imagine if the line is blurry, maybe it becomes easier to cross...and convince others of your right to cross it.  The sad result is that people who truly need and qualify for these programs, who have come to that scary point of desperation I found myself in so many years ago, have to fight even harder to get them.  My own battle to win SSD, as I have mentioned before, took 2 1/2 years.  I know other people have faced longer, more difficult fights...I also know that many people in that situation give up before the battle is won, because they just don't have the energy to fight anymore.  That is another point of fact my lawyer explained to me...and that I think was the most upsetting of all.

If the actions of others are not my concern; if everyone can only be responsible for themselves and make their own decisions about where the lines are drawn, and when and where it's okay to cross them, then how does the problem get fixed?  If this is a noticeable issue to myself and others I have discussed this with, then the problem is obviously not being dealt with the way it needs to be.  I continue to hold onto hope...hope that someday the system will work properly; that people who qualify for assistive government programs will get the help they need.  And not only will they qualify, but will not have to suffer through exhausting, lengthy battles in order to receive the help.  This hope stretches to all people, whether they are disabled (physically and/or mentally), dealing with financial stress, educationally challenged...the list goes on.  For we all face struggles in our lives, and in one time or another we may need a helping hand.  For now, for me at least, it's a problem I can no longer ignore...I have to continue to question such things when I see them, and talk to others about these issues through word of mouth, and writing this blog.  Because that is part of my truth...and I can only hope that it's enough.