Who's scared now?

I am!  I currently survive on public funding.  Yes, it's problems are rampant, and the rules binding me are ridiculous.  Much of the time, I wonder if our public funding system creates much of the oppression in our country.  There's a certain stigma attached.  I'm ashamed to say that admitting my funding resources, and how I get by in my day to day life, is through funding provided by section 8 (housing), social security, disability, and food stamps.  I wish I had gotten my degree in social work, at this point.  I have a major problem with how these funds are allocated among recipients.  Freedom is nonexistent within these boundaries.  Public programs were created as a foundation to ensure the well-being of its constituents.  Somehow, our foundation has become cracked, and now these programs serve the financially desperate, and/or the morally corrupt.

As we consistently  fight to maintain my programming and benefits, there are many days, I consider leaving.  Getting on the next outbound flight, and leaving this oppression behind.  I admire the structure of public programming, however the actual implementation, and individuals running the show, are a different story.  Corruption, embezzlement, lies, mostly over money it seems.  I never imagined I might feel sad about proclaiming my nationality, though, today, if feel deflated, empty, and beaten.  Here, no one cares about your work ethic, your honesty stabsvyou in the back, or denies you claims, and finally, your money just appears like magic every month, for NOT contributing to the greater good.  God Bless America....  Somebody has to...

This article originally inspired me to write about the benefits of public programs, in their defense.  Clearly I view them as flawed, however anarchy seems imminent, if we agree to allow money and ignorance to govern our great nation...

http://m.huffpost.com/us/entry/5165995

Social experiment

Here's how I feel, I lookThis spring, I'm enrolled in a public speaking course at UVM.  I took a similar course in my undergrad, although, I'd clearly lost any skill, or confidence I may have gained from that course.  I really enjoy telling my story, , as it's many things, from shocking, to horrifying, to hilarious, to moving.  The path I walk today, is anything, but expected, and I enjoy raising awareness, but, let's face it, I speak in a relatively unique way now.  My voice is profoundly more clear now, than it was, even a year year ago.

I still have to actively think about the volume of my voice, remembering to breathe deeply while speaking, and take into consideration, how to move my lips and mouth, to form each word.  It's a lot to remember, and on top of that, I have to retain  what I'd planned to say, and try to remain organized. Enough to convince my group, and class why beauty pageants are a positive influence within society.  Frankly, I could not care less about pageants, I remember appreciating 'miss Congeniality' for its raw humor,  and demonstrating that not all women, are poised, and move fluidly, with coordination.  'Little Miss Sunshine'  was another fantastic pageantry comedy, that made fun of the trivial absurdities, and unique personality traits, so well.

Realistically, if pageants make some people happy, then those people should appreciate them.  I had to tell my group why I appreciate beauty pageants, and name positive aspects of them.  Apparantly there's a fair amount of scholarship money in them, for winners.  I also decided I should look the part, so I put on some make up, and fussed over my appearance, before I went to class.  Call me crazy, but it seems if I have to care about beauty pageants, then I should appear to care about my own appearance.  I hope that I do, anyways, but makeup has never been part of who I am, or want go be, at least on a daily basis.  I felt like a kid, playing dress up, but it put me in the right frame of mind, and it didn't hurt that some kid literally tripped himself, running around me, to open the door for me. People are generally very kind, with holding the door for me, but the enthusiasm, and lack of coordination, combined, struck me as hilarious, in that moment.  He did make it, but I was a bit dumbfounded, watching it take place.

The many faces of me

Here's how I usually look

Here's how I feel like I appear (that's me on the far left)

This is what I wore to present my beauty pageant advocacy speech.

I 

still feel like I little kid playing dress up.  This lifestyle is so bizarre, although,I'm clearly not the only person out there with image confusion issues.  Yesterday, I was walking to the corner market, and walked around a person wearing a banana costume.  As I was told, dress for success.  Not sure what dressing like a piece of fruit gets you, maybe some funny comments, and possibly a free banana?  Hard to say with that one.

The mountains are calling! Much adieu with Crested Butte

AMAZING!  I enjoy these trips so much!  Everyday is a brand new experience.  I love everything about traveling, from the Invariability of arriving on time, to wandering around different airports in my wait, for my next flight.  I also landed early, which never happens.  Only about ten minutes,but still, nice! Getting off the plane in Gunnison, I'd begun talking to an older gentleman, inquiring about which mountain I was headed to.  It seemed that we were both headed to Crested Butte.  The conversation then turned to Saturdays Madis Yahu concert.  Apparantely, his son was in, or managed the band.  I said I was planning to go with my friend, although did not have my ticket yet.  He offered to allow my friend and I VIP access, so I gave him my email, and promptly forgot about the interaction, as I located Maggie.  I was slightly thrown off by her Crested Butte Fire Department attire, but she had just finished a shift, on duty as a paramedic.  As soon as we got in the car, she informed me of my rigorous schedule, for the next 5 days, and I could not have been happier to hear, that I didn't have a free moment, the whole week.  My idea of a vacation, is to have a jam packed schedule full of adrenaline laden activities, and lots of social activities, as that's nearly the opposite of my day to day life.  I knew going into it, I needed to be mindful of the amount of sleep I got.  I was super excited to see Maggie's new place, which still featured a stairway I needed supervision on, though was bright, open, and spacious.  And, to boot, a spectacular view of the mountains, and direct sunlight.

We arrived to her condo around 8:30,  and chatted a bit, before I crashed.  My alarm, went off at 7, and was particularly unwelcome, but as I opened my eyes to blazing sunshine, I remembered where I was, and what my day held in store.  I was slow moving that morning, and the coffee stop was necessary, I've suddenly become a coffee drinker, I'm not too pleased with myself for that, although, it made the morning, all the more glorious.  Going back to the adaptive sports center is always a treat.  It's teeming with energy, and I'm beginning to remember more faces, and names, finally.  and Each trip, I get meet many new faces too.  I was working with Marc squared, which soon becacame Marky, Marc, and the funky bunch.  Guess who I became, in this equation?  'The funky bunch'.  It took me a few days to embrace it, but we all had fun with it.  I worked with Marc D. last year, and was pretty excited or the continuity, and somebody who already had a grasp of my abilities, and difficulties.  It still pisses me off, the first few runs, as I remember I have to wear a seizure belt, on the lift, because I suffer seizures.  There are so many seizure disorders, I understand the precaution,  I just don't agree with it, in my case, as I know when I'm in danger of seizing, and couldn't be moving, let alone getting on my snowboard, in that state.  Oh well, I get it,  it just evokes terrible memories, and takes me back to a time where I needed constant monitoring, and supervision to ensure that I didn't acquire more injuries.  It often seems surreal, to be out having these incredible experiences, considering how incapitatated I was 6 years ago.  I just have to deal with the safety precautions.  As soon as I became distracted on the lift, taking in the view, and bantering about the answer to the trivia question, it was nearly forgotten.

That first morning, the conditions were atrocious.  Hard ice, with a millimeter of snow covering.  Just like the mountains in Maine, where I learned to ski, growing up.  I wondered if I was trying to ride a glacier.  I had a hard time, as I couldn't stop, and we all know falling on ice HURTS.  I was not feeling brave, or ready to make my own turns.  I was overly cautious, which also makes me fall, so, I'd had it after trying once, to make my own turns.  Not, the best start, for my morale, but taking in everything else, it was a great day, we grabbed dinner at the resort, and must've met 4 new people in the course of eating.  It's a small community, so it seems Like Maggie knows everybody.  It's always fun, but I do not like meeting people while I'm eating.    Oh well. It happens everywhere,I should be used to it.

I went to sleep, as soon, as I could, upon returning.  I love being so busy, I'm exhausted, by the end of the day, it's so gratifying.  The next morning, I awoke with sunrise again, peering out the window, to see a dull glow behind the mountain tops.  Maggie blended us these power smoothies.  I had no idea what exactly was in them, but they were an awesome start to the day, on top of the granola I also had. I felt as though I was always eating, and it was all great food.  We stopped for the morning coffee ritual again, while Maggie detailed my insane schedule to me.  She was off to Denver for a  hockey game, between Boston, and Denver.  I'd been invited, but preferred to spend my precious time in the mountains.  It sounded like they had a great time, which made me happy.  I love hockey, just not nearly as much as snowboarding.

I rode with Marc squared again, and while it was a tougher day, for me physically, we made the best of it.  The first run was a hand held asisst, where I hang on for balance, and to prove to myself, I can make it down.  The second run, I opted for hand held asisst again, instead of working on my own turns.  We were making a turn that felt slightly choppy, when I suddenly collided with Marc, and literally saumersaulted over myself.  Talk about dad zed, and confused.  In that moment, I was so thankful for my helmet.  We both fell pretty hard, as we'd caught an edge, and had gone flying. Tthe lunch break was perfectly timed, so gathered ourselves,headed in.  Friday was the first day of ladies camp,  so we all got to catch up a bit, over lunch, get reconnected, and swap stories.  Lunch passed very quickly, and soon enough, we were back on the slopes.  I saw very little of the ladies out skiing, but I also have difficulty visually processing more than one event at a time.  I have a hard time directing my efforts into the physical act of speaking, while doing another physical task.  I'm sharp, but I have a hard time completing 2 physical tasks at the same time.  That afternoon, I opted to try the sit ski.  It was very different.  I couldn't liken it  to anything I'd previously done.  I fell only once, even though I had a very difficult time trusting my left side.  I had keep my focus on using my left and right equally, and my left side has to work twice as hard.  I'm the sit-ski newbie, being the only snowboarder, I can't ever relate to their experiences, or stories.  Also I got to see a lot more of the mountain.  I was really happy to have tried it, but for now, I'm pleased with trying to regain my snowboard abilities.

Dinner that night was hosted by an adaptive volunteer, who goes out of her way to welcome us, and share her life with us.  Her generosity is overwhelming, as she had 10 of us over for dinner, and prepared 3 fantastic quiches, salad, and to die for brownie sundaes.  Over dinner I found myself talking about my writing aspirations, and Sandy told me about a conference at the local University, Western State.  I'm still looking into it, but what could be better, than writing in a inspirational setting, surrounded by so many brilliant writers?

That night, an adaptive intern, Hanna,  had kindly volunteered to help me out, at Maggie's. At first I was nervous about it, only because I didn't know her, though many of the adaptive staff only had great things to say, and she was in fact, a warm, friendly gal, with a kind heart.  It just can be nerve racking to find yourself in the care of a new person.  Given some of my poor past experiences, it's not the easiest thing for me to go into a situation like this with an open mind.  Although, I was able to recognize that his was a very different situation from what I'm used to, and tried to see the best in the circumstances.  And, of course the moment I met Hanna, my uneasiness dissipated.  She was easy to talk to, and great company, just as I'd been told.  The next morning we got ready to go, and zipped out the door, in record time.  I had breakfast plans with Elaine and Julie,from our ladies camp group.  They were staying at the Grand Llodge, which had a fantastic brunch selection.  Brunch, is without question, my favorite meal.  A staff member kindly helped me carry my plate, and acquire way too much food.  I enjoyed my oatmeal, French toast, bacon, fruit cup, and home fries.  Slightly ashamed of myself, I ate it all without hesitation, and attempted to participate in conversation, although eating is still a task that requires a bit more focus, as I have to actively think about it, to ensure that I don't a) choke, b) accidentally inhale food, or c) try to talk, and accidentally spit food out.  Admitting the mental focus, and stamina this injury requires of me, is not the easiest thing, it's just that I find it so frustrating not to participate in the social activities surrounding a meal with friends.

Elaine's sense of humor is fantastic, she loves to have a great time, and make things fun for others.  As she and Julie were staying at the lodge, every morning, staff from adaptive came over to accompany all of us, on the short walk/roll to adaptive.  That was probably my first morning getting on the mountain around 9:30. Even though, I chose last minute to change everything around, and try the ski-bike again.  Physically, it wasn't a great morning, my muscles were tense, and I felt slightly unsteady.  Not the best combination for snowboarding.  I was also slightly sore from yesterday's fall, and was not looking for another opportunity to repeat it.  The  vast beauty the mountain has to offer.  My first year at CBMR (crested butte mountain resort), I did one run, peach-tree, almost every run I took.  The following year, I got to experience more trails, although I still rarely got yo see any of the rest of our group.  I love snowboarding, and am willing to do whatever it takes to get my indepence back, with doing it.  I probably will always need adaptive asisstance, though,I will never lose the drive to keep pushing myself to reacquire whatever abilities I'm able.  I was happy to have the experience, but I knew it wasn't how I wanted to enjoy the mountain.  I don't trust my left side at all, so making left turns was quite awkward.  The mental fears I have in relation to using my left side, it's I never learned to trust in its abilities, due to weakness, and spascity. I usually ask people not to walk on my right, because I find the movement distracting, and feel I'm more likely to lose my balance.  Although, it only happens on my left side.  As always, some days are difficult, others not so much.  I used to get really excited everytime I'd have a recor-breaking good day, because I assumed it meant I was making this grand improvement towards a more mobile lifestyle.  Turns out, there are good days, and bad days with a brain injury.  On my great days, my brain fires on all cylinders, and I feel nearly unphased by limitations.  Then, on a bad day, I need help in the kitchen, or paring food, serving it, cleaning up, getting dressed takes 45 minutes to an hour, because I get so shaky.  I will not ever askfor help dressing, unless it's a difficult zipper, buttons, or tying my shoes.  This is how my body functions, invariably, and spastically.  I've never found the words I felt, summed up my difficulties, until now.  One of the million reasonsI'm so thankful for adaptive programs like this one.

Trying out the sit ski, I got some breathtaking views, and felt all the more driven to improve my snowboarding, and coordination, so that one day I'll be more adept at riding more difficult terrain. That is a dream to shoot for.  I was a feeble snowboarder prior to my injury, never had taken a proper lesson, but it fell in love with riding the snow that way, my first time out.  I grew up skiing, but from the moment I tried boarding, I knew I wanted it to be my preferred choice of mountain sports.  Learning a sport I was barely adept at before my injury, seemed far fetched originally, but thankfully, where the there's a will, there's a way.  This week, Maggie, Marc squared, and the entire adaptive community helped me realize this opportunity.

That evening Madis Yahu was playing a show at the resort.  I would describe them as a Jewish reggae band, if you've never heard of them.  When Maggie originally asked me if I wanted to go see them, I had to check them out on Youtube. I was immediately struck by their unusual appearance, and sound, so I wanted to see them.  I'm so glad Maggie suggested it, otherwise, I would've continued on in my oblivion, having missed a great show.  The show was outside, at night, and somewhat disorganized.   None of the employees had a clue of how  to help people with questions other than directions, and once we were under the dome where the show was, it was chaos.  No seating anywhere, and an open bar, in the back.  At first we were at the very back, on the edge of the dancing/swaying crowd, watching the opening band.  Maggie ran around looking for something I could sit on.  I felt okay on my feet, thankfully, but 3 hours is a long time to stand in place.  Around the time she returned with a milk crate, I sat down, just as Madis Yahu was coming on, and now was sitting so low that I had a glamorous view of 1,000 backsides, and a cool light show.  Just as I was getting aggravated with sitting, I heard my name, and rose to turn around.  It was the man I'd met in the airport, and he was talking to Maggie about getting us VIP access.  I want to remember his name as John, so that's what I'll call him in this story. I had seen him at the resort twice, and both times had difficulty recognizing him, or remembering our interaction at the airport.  However, in that moment I've never been so thankful for a random act of kindness, like that.  My concert experience was instantly transformed from a slight bummer, to an incredible, crazy, hilarious musical experience.  There was a place to sit, as well as space to stand, stage side.  At one point, the guitarist strolled over to bum a light off someone nearby.  Instantly 3 hand with an open flame in each went up, totally thrilled to have the opportunity to give Madis Yahu a light.  Once hey came on the stage, the time flew by, and the show was over way too fast.

It was so hard to get up, that next morning, and I hadn't even been drinking. The sun was out, and I hold myself, when in Rome, you have yo get out and play, so I got up, hating myself for going out to play, the night before.  As soon as I ate, I felt slightly more human, and the icing on the cake, was the coffee stop I'd begged for.  By the time Iwe got to adaptive, I was using full sentences.  And after our first run or two, I'd entirely forgotten how tired I'd been, waking up.  If only I had amazing adventures to wake up to, more often.  Marc had me rtiding on tethers, that day.  I really wanted to be able to work hard, and have a great day, that Sunday, as it was the last day of ladies camp.  We had a great morning, but I was pooped by the time we came in for lunch.  That afternoon, I decided yo try ski biking again.  I loved it, last year.  However, once I was out there,  it seemed as if  I'd conveniently forgotten how much work it was, and found typically underused muscles whining. 

 This trip, I had my first ever, 'ugh, I'm getting old breakdown'.  I am turning 30 this year, but it's just a number.  I am stressed that I'll hit 8 years post injury, and that I'm still living on government resources.  I finally finished my rehab program, but pushing my way out into nothing,  was obviously not a genius move on my part.  I've been in such a rush to move on, I figured things would fall into place, once I finished rehab.  Instead, I just feel like I fell apart, empty, bored, and full of self doubt.  I remember these feelings, I felt like this the summer I graduated from UVM.  I threw myself into a new relationship, and training for my first triathlon, while going for countless interviews for jobs I was less than passionate about.  Sean was my lifeline, in more ways than one, that summer.  I did eventually find the elusive job I'd been looking for, I I just 'died' before I could take it.  Yes, died is my choice word.  Clearly I'm not dead, and I'm ever so thankful for that, though I did lose any semblance of my independent, active, social, and rewarding lifestyle, to start all over.  I'm so fortunate to be the same mentally (for the most part), and I'm lucky to have the oppotunity to grow, and redevelop, my athletic passions, even if its unbelievably frustrating, and difficult, this is an opportunity that many wish for, but very few have the circumstances, or drive to endure. The harder I work to establish my physical abilities to whatever they may, or not be, it's all success in one way, or another.  This is yet another reason why I look forward to these trips so much, as I gain a new vantage point, from which to measure my growth.  Crested Butte Adaptive Sports  Center   is a magical spot, full of adventure, growth, and a vision for change.  Thank you to all who were involved, or took part.

Heavy things

(Heavy Things is the only Phish song I like, random, but true)

I just watched this awesome clip of an interview, with Lady Gaga.  Not even sure why, really.  I'm not a big fan of pop.  When I realized how long the interview was, I thought, 'I'll just check it out, and carry on.'  The title was about maintaining her independence, which was what grabbed my interest.  It just made me think about following your passions, and doing what makes you happy in life, over selling out, to do what the masses tell you to do.  These are all things I remember being hold, as a child, to follow my heart, and do what makes me happy.  I hear that a lot now too, and genuinely try to follow it. I'm much harder on myself, than most others are on me.  But, I also think that's true of many people.  Life with a disability is my life now.  It's been 6.5 years, I've learned a lot, about people, myself, and many other things.

Yesterday, I went snowboarding, at Smugglers Notch.  I've really enjoyed their adaptive program, over the years, but I was rather unsettled, walking in, in a rain storm.  I was psyched to be there, but not pleased about the conditions.  Rain, makes the snow sticky, and slushy.  You get wet, when you go down, so I was trying to mentally prepare myself for that.  I have to face the fact, I always have at least one fall.

I was working with a new instructor, to me, anyways.  Adaptive is a truly unique world, and I have so much respect, and admiration for most of the people I've worked with over the years.  It is a job, but they help me, and so many other people get out, and enjoy the activities I/we love.  Pretty damn noble, if I think about it like that. Yesterday was not a difficult, unresponsive day, but sometime I'll be stuck in my head, without the ability to talk, and ride, or run, walk whatever.  My mind is always running but the physical aspect of forming my words, and doing another task, is often beyond me.  I can only process the movements, I have to will my body into making, or try making.  I felt fortunate, as yesterday, I could talk, and ride, or ride, and translate my instructions into the mostly correct movements.  I was also working with an instructor who was really easy to talk to.  It's funny how were all different like that, obviously we all can't get along with everyone, but I I can't get over the fact that sometimes you instantly know you like, or really dont like another person you encounter.  I think it's part of our animal ancestry.  I've just lived in a world where I've had 1 mode, apathy.  I had memories of things I used to recognize on an entire range of levels, from good to bad, to indifferent, so that's what I used, to make comparisons, and decide how to judge a situation, or if I liked, or didn't like someone.  My experiences relearning life, are completely unique, I'm not always sure how to relate my experiences, with people I'm just meeting.  But, my day on the mountain helped me realize, I'm still Courney, Cblaze, sloth, Courtee, and the many other charming names you've all devised for me, in my earlier life.  I don't know how my neurons are re-awakening, I /we thought they were dead, but it is possible to create new synapses.  However, against all odds, I'm still the same, in many respects.  The best feeling in the world, is to be yourself, and be proud of it.  I might move, react, and speak differently, but I'm getting there.  I wouldn't wish this journey on anyone, but as they say, 'you don't know how strong you are, until it's tested.'

So, here's to a miraculous ongoing recovery, and all of the unconditional, love, support, coaxing, and will, it has taken to get this far.  Thank you everyone, for helping me get from mute, blind, and 

Bedridden, to a place where I am back to pushing myself to doing bigger, and better things, around each new turn.  Your faith has helped me get here, and I am truly grateful.

Not for the faint of heart... Trust me!

Seriously if you are squeamish at all,read no farther!

So there I was, oh shit!

This is one of those stories.   About a month ago, I was having a terrible mobility day, but there I was at PT, forcing my brain to make my body go through my exercises. A bad mobility day includes what my doctors refer to as myoclonic jerks, where my whole left side will randomly toss me on the ground.  (yes, it's about as fun as it sounds). I move much more cautiously, and even more slowly, then my normal sloth-like pace.  It's as if I can feel my brain trying to find new pathways to get these muscles to move.  Now that I'm thinking about it, I imagine it's  the reason my days can be so variable.  There is  a lot of work being done, to form these new neural pathways.

  Anyways, I diverge from my original story, and there I was,fighting with my body to move, I'd gotten through many of my exercises, and had just finished my 'lazy man' sit-ups, where I sit on a big excercise ball, lean back maybe 45 degrees, and twist my torso, as well as a 15 lb. weighted ball, left, and right.  I don't doubt it helps me in some way.  I refer to it's a lazy man sit up, because I do that 45 times, and rarely feel I've exerted myself in any way.  My PT says I'm doing the movement correctly, but I'm not convinced.  My belly resembles the Pillsbury doughboys, and I do 45 sit-ups 3-4 days a week.  I guess that means I should do more...It's just one of those things, that obviously bothers me.

  I completed my sets, and carried the weighted ball over to the shelf it lived on.  In doing so, that pushed a 15lb chunk of iron (kettle bell) off the the shelf I was standing under.  It lit me square on my big toe.  My whole body became tense , and I grabbed a nearby machine for support.  I couldn't speak, the pain was so intense.  It's like my primal response, I can't really use my words,until I can realize I'm not actually dying.  That's probably an exaggeration, but that is still how my brain operates, one pathway, at a time.  I'm sure most people never have the opportunity to make these comparisons, but I think about it all the time, like when I'm walking with someone, and trying to focus on where to put my feet, maintain my balance, and thinking about the movement patterns for my mouth, and lips to formulate each word I want to say.  It's the same going out to dinner, too. I'm thinking about the physical process of chewing my food, swallowing it, and listening to whomever's talking, while deciding if I want to contribute to the conversation.  I love to eat out, for the food, but the social aspect of it, is generally on the overwhelming side.  I am happy going out in situations where I don't feel pressured to talk, because I can't always get my words out, at the normal rate of conversation.  And, I have to take a break from my meal.  I never used to think about the intricacies of daily life tasks, and now, this is part of everything I do, wherever I go.

In the moment, the toe didn't appear broken, just way painful.  I got a ride home, and put assorted frozen items on it, to reduce the swelling.  Around 6pm, I decided the ibuprofen wasn't cutting it, and I couldn't tolerate the pain.  My roommate/aide brought me to the walk in clinic, where a doctor affirmed a frracture.  He then, drilled a hole in the toenail, to dlieve the pressure, and the pain immediately subsided.  I'd hoped to not lose the nail, but, a couple weeks back I noticed it had begun to detach from the back.  I just left it alone, assuming it would detach when it was ready.  Although, last week, I became suspicios, of infection, when the foot began yo smell like, what I'd  to refer to as death.  I set about inquiring for doctors appointments this week.  The podiatry office I called, offered me an appointment in May, and my general practitioners office, said Monday.  This where I lose my better judgement, and removed the dead portion of the nail, with scissors, and used tweezers to pluck out the obviously foreign body, that was the infection.  I put a bunch of rubbing alcohol on the wound, and headed to find the neosporin.   As I sat back down, and peeled the bandages out, I peered more closely into my open wound.  My stomach clenched a bit, as I realized, I was seeing, an open cavern, and my my big toe bone.  I can only assume the alcohol burned away the necrotic (dead) tissue, but what an unpleasant sight.  I filled the open space with neosporin, and called it good.  I bandaged the toe up, and thought I'd be good to go.  Apparantly, my bandaging skills are shotty, because it came off, in my sleep, and I got up, to repeat the same process.  Upside, as of today, the toe is still alive, and appears infection free.  Downside, I may have unwittingly unleashed trauma upon whoever takes it upon themselves to read this entry.  (Cackles) My deepest apologies...

Side note, please do not lecture me on my home medical practices.  I am fully aware, my unsanitary methods, may, or may not harm me.  I'm not recommending others try my lunatic adventures in 'home surgery'.  This is just how I work, and I'm aware there are risks, so here's to not getting gang-grene!

Filthy/gorgeous

I've been a bit of a homebody the past couple days.  My only outing yesterday, was PT, and today it was for a brain injury support group.  Somehow, I've found found myself facilitating the Burlington day-time support group, and I find it helpful to attend other groups for ways to inspire the group I 'lead'.  There are some hard-core regulars, and even past therapists from my outpatient days.  Attendance of the daytime group was so unbelievably high, last week, I wanted to check out attendance of this group, which is usually large.  .Brain injuries are all SO unique, we can often relate one another's acquired  difficulties, but every combination is so vastly different.

A vision therapist was speaking at this group, which I was also interested in learning more about, oven my own questionable set of visual difficulties.  2 years ago I did a visual field test, and the improvement from 2 years before that, was unbelievable.  Between those 2 scans, from 2009, and 2011, it registered a 50% increase in my visual field! Tthat is, which parts of my eyes, are actually registering the information they're receiving.  I'll try to scan those images in, to demonstrate this miracle of my recovered eyesight.  I remember how fortunate I felt to learn I was a candidate for LASIK, in 2011.  Walking away from contacts, and glasses, changed my life.  Hands down, the best investment I've made, for myself.  The neuropathy in my fingertips, made putting in contacts impossible.  And yes, blue eyes are pretty, but they also refract the most light, so the sunlight can get pretty frustrating.  I literally get the urge to either puch the person nearby commenting on the sunlight, or to curl up in a ball, and hide my face from the sun, if I don't have sunglasses with me, and the sun magically appears.  Burlington is supposedly the 2nd most overcast city , in the US, and given how rarely we see the sun, I don't usually have them on me.  Well, on the bright side, my visual abilities are profoundly miraculous, and there's not a day that goes by, where I'm not thankful for that.  I'm undecided about vision therapy.  Normally, I'll sign up for anything that can potentially help me improve, but eye issues, with regard to the brain, but vision therapy is ambiguous,mand my case is do unique, I more used to being pushed aside, until, I can find a way to explain my difficulties.this transformation has been miraculous, albeit grueling day-in-day-out, I am so thankful for my own progression, and nowto have the opportunity to gibe hope to others in similar ,situations.

I've been so fortunate to have so many amazing souls touch my life, I hope that one day I'll be able to do the same for others.  Am I thankful for this injury, absolutely NOT!  But I am so thankful for theincredible  supportive help received along the way, and for many of the amazing, inspirational folks it has brought into my life.  I may have just found the upside, to the mostfrustrating, and challenging 6.5 years of my life. SCORE!

BTW, today's title is the name of my favorite Scissor Sisters track.  They're an English band, I was crazy about in 04/05, but I seem to recall them making noise here, soon after that.  I was looking for that cd, the other day, and trying to remember my favorite tracks.  So random.  But, a great song!

What is happiness?

Firstoff, today was splendid, by all accounts.  I went running with an intriguing, motivating group of people, enjoyed a super delicious post-run meal, got some amazing deals (70% off) of new running clothes.  One thing I love, is a great deal.  The morning was fantastic, I'm so thankful for all of the incredible people I get meet, through being active.  I know a couple folks from a spin class at the Y, and they volunteered to help me run with them, in a local running group, Team in Training.  I still have a hard time maintaining conversation while I'm out jogging, but the mire opportunity I have to do it, and work on it, the easier it becomes. They're teeming with positivity, I feel so excited to go out and drag myself through the frigid air, before 8 am.  This is not usually favorite time of day.  Although, I'm realizing, it all depends on what my day looks like.  I'm happy to get up at anytime, if I'm looking forward to the days events.  Imagine that.  Although, seriously, it's been really helpful for me to realize that again. Funny how all this works.  I go around having completely obvious realizations all the time, and my readers find it interesting.  Okay...  Once I returned to my place, I sat down to find a favorite, old carryall bag, I've had since college.  It is, in my opinion, the best design for a bag, out there.  I've been looking everywhere for that bag, for months, and today it's there, in a place I've looked through, at least 4 times.  I was so happy to find it, but, frankly confused, and worried too.

Technically, I believe the definition of crazy, is something like, the act of repeating the same process, but expecting a different outcome.  Well today, I took off my hardcore ice cleats for running, and as I bent down to put them under the futon, I saw the bag, in a corner I've checked a few times, in plain sight.  I used to do this kind of stuff from time to time in college, where I'd misplace things, and find them in a rather obvious spot, the next day, after I'd turned my living space inside out.  But now it takes 4 months, and 3-4 intense cleaning frenzies, before I randomly see it, in plain view?  So ridiculous, but, inside, was a bonus.  My favorite sunglasses.  Completely unexpected.  Although, surprising.  I'm, let's face it, rather anal about keeping glasses, in cases.  I'm wearing glasses to cut the glare, and see better, not wonder why my world looks scratched.  I felt confused, and a bit angry with myself, when I wanted to just appreciate the fact I'd located 2 missing items.  So weird.  I had a grilled cheese sandwich, and wondered about solutions to loosing, or thinking I've lost my stuff.  Immediately, after finding the bag, I went to look for my favorite wine glass, and then this sweet mountain hard wear hoodie, that went missing last fall.  They both had sentimental value, so I went nuts looking for them, because I'd just found 2 other favorite things.  I guess I've settled the question, 'am I crazy?  Yes, folks I am.  I went looking for things I knew were missing, and expected to find them, that's a different outcome.  Therefore, by association, I am crazy.  Glad I've settled that one.  I imagine anyone reading this, has now concluded, that I am a fool, as well, because they already knew this to be true.  But let's face it, it's easy to go around pointing the finger at others, but, stepping back to look at yourself, that's just scary.  Really, I did not need to realize I truly fit the definition of crazy.  Sure it's funny, I suppose, but that information doesn't help me in any way.

And then, it was time for community meditation.  There's a potluck dinner before hand.  We all sit down, and share wholesome delicious foods.  I love pot lucks, as they're a great opportunity to try new foods, or things you're not accustomed to eating, and you haven't wasted money, on buying meal you don't appreciate.  That's a win, in my book.

The monk who generally leads this meditation has a great sense of humor.  I'm by no means an authority on this subject, but I did not become I tested in meditation, because I foresaw amusement potential.  When he's trying to be comedi, it's usually dry/sarcastic, and other times' it's clearly not his intention to be funny, but there's a beautiful opportunity for a light hearted jab, and  I can't help myself. Fortunately, he's very good natured about the harrament.  There's always a personal reflection towards the end of the meeting, and tonight's discussion related to happiness, and a mathematical formula.  Math is not a forte I easily relate to, howevever this equation was relatively simple.  In effect it represented the solution that desire does not equal happiness.  Stated so simply, I don't know how anyone could disagree with that.  We see examples of this everyday.  Say you want your morning coffee.  You get it, and theoretically, in that moment, you should be happy.  But, as you take your first sip, you burn your mouth so badly, and now your day seems ruined, and the list goes on and on.  In the end I took away 3 steps, or main principles.

1.  That we all need to slow down and appreciate things, individualally.  

2. Desires can be in good context, or bad, but happiness is commonly viewed as pure good, thus arises a need to be mindful with regard to your desires.

3.  Finding the key to happiness is relatively easy, unlocking it, is the hard part.

How do you like them apples?  It was a really enlightening group discussion, and very intesting to realize that each of us has independent views on the meaning of happiness.  I needed clarification, on the difference between goals, and desires, in this context.  The answer is to break things down into a smaller picture.  I understand that, it makes sense, but I don't look at all the small stuff, I look at the big picture, that's how I see the world, so I didn't find the response as helpful as I'd hoped the answer would be more concrete, like the original equation.  In conclusion, I'm not any closer to achieving true happiness, than I was 4 hours ago, before I listed to this talk.  Although, on the bright side, I have now concluded ethereal questions are, indeed, a waste of time.

An average day

Woke up before my alarm went off.  This only happens when I don't have a pressing schedule.  Being that I'm makiingva real effort to clean out my stockpiles of food I've never cooked, I spent the morning devising a simple meal.  I also spent a lot of time in Facebook, trying to put myself out there, and do some fundraising for my annual 'snowcation' in Crested Butte.  This time of year is always pretty exciting as I get geared up to spend se time with Maggie, the Adaptive Sports Center!  It all happens so fast.  Every year, I find the travel bug more voracious than ever!

If only I could  find my dream job, that lalowed me to travel,  Be adventurous, and write/publicize adaptive ventures.  

If I've learned anything from acquiring g an unheard of disabity, it's the importance of finding my own path.  And keeping on track with it.

These days I'm beginning to remember who I used to be.  My dreams from another lifetime, the goals, accomplishments, and drive.  The abilities I learned from my early years, life was looking up, as I got ready to take that next step.  I was surrounded by such amazing people, in those years, around the clock.  Of course there were minor pitfalls, injuries, and heartbreaks.  But everything moved so quickly there was no time to stand back, and learn from it.

I was a smart kid, but also very headstrong.  I did things my own way, to learn the process for my own peace of mind.  I still need that, and it still upsets others, imagine that!?

I am not someone who appreciates the process of preparing a meal, however, I love the finished product.  I found some whole wheat noodles, a stock pile of pasta sauce, and rescued some chicken sausage from freezer burn.  I'm not often willing to brave the art of handling 2 burners at once, but it all came together today, and reveled in the the form of a new, and seemingly tasty dinner.

Once I'd restored the kitchen to its original state of grime, I tried to hurry up, and get out the door before my cardiology appointment.  I saw the nurse practitioner.  An aide came in first, and announced she needed to do a EKG.  I bit my tongue, in orer to not start bitching about what an impractical use of taxpayers dollar were being spent, on a test that couldn't give them any new information.  I later made that comment to the NP, as she explained my relatively normal current heart function.  I understand medicine is a regime here, and you have to follow protocol, to avoid mistakes, and, err lawsuits.  I just get riled up because we spend billions more for healthcare in this country, and, of all the developed countries, our outcomes, and expenditures come in last place, among the developed nations, in the world.  I can rant about this endlessly, so, I'll cut myself off here.  But, yes, we have the WORST healthcare access system the world.  Go USA...

Normally, I'm the person who holds all their thoughts, and feeling in.  Although, whenever I find myself in a situation with an unfamiliar professional, I begin to espouse the problemsoif the medical care system in this country.  I didn't intend to directly blame her.  This woman was all in all nice to me, and I went ballistic and called her a muppet of a failing system, which frankly was terribly rude of me.  It's not her fault healthcare is so dreadfully administered here, she probably became a health care professional to help people, not to engage in policy, and regulation battles with clients.  My conclusion, the system is rubbish, and sometimes I'm a bigger ass than I I tented to be.  There we have it.

Once upon a time..

Everyday is different for me, not only in regard to how my head is dealing with life, but also with how how very little structure I have.throughout my experiences with my brain injury, I've been forced to accept many different new realities.  Although, recently, I had to come to terms with my personality type.  Much of my young life I thought A type personalities were among the most annoying, and pushy humans I'd met.  Actually, I still often think that, but that's irrelevant.  Recently, I put it together that I also have that personality type.  There are several other, more positive attributes to this personality.  Fiercely motivated, strong willed, or driven.  This personality type can be super annoying to others when we brag constantly about accomplishments.  I guess I say this, because sometimes it seems as if this blog is dedicated to my daily accomplishments grand, or mundane.  I hope it doesn't read that way.  This is a long and twisted path I walk now,, but I hoope the hardest bit, is behind me now.

Not a whole lot is diffent now that my proper  rehab program is over, except that there are far fewer people in my life, on a day to day basis.  I will always be seeking to impove, not just because of my injury, but also because that's who I am.  Life is, actually  short. 2nd chances don't come around everyday, so I feel I'd like to make the most of mine.

Moving on, I was nervous about PT today, as I had 2 massive myoclonic jerks this morning, in the kitchen.  Basically my left side convulses, and I find myself 3 ft away from where I'd been.  I used to just end up in a heap, whenever this occurred.  But, today I saved myself once, and the refrigerator handle saved me the other time.  Those big twitches are usually an indication I haven't taken my seizure meds, but, I already had, so it remains a mystery to me.  Thankfully, I only had those 2, and didn't have any others.  So, the balance/obstacle course part of PT flew by, but is always somewhat draining, because it still requires ALL of my mental focus, and concentration.  I've been working on it for a little over a year now, and while I'm miles ahead of where I started with it, I  still have miles to go. 

I finished my afternoon, with a meal at city market, and headed over to the YMCA, to get some aqua jogging done.  Chipping bone off my big toe, hasn't been great for my running, so I've returned to the pool, to pretend jog through the water.  It's just as ridiculous as it sounds, but it's really helpful with sustaining your aerobic abilities, so I'm trying to be better about it.

In the locker room, I ran into an friend/acquaintance from our UVM days.  That is always really exciting for me!  We were both Alternative Spring Break site leaders.  We never led a trip together, but I knew her from training.  Oddly enough, I'd thought my coleader, Erika, from my first trip, when 'Stuck in the Middle with you' began go play, at the gym.  My brain has started making connections again!  Random and insignificant as it may seem, I've lived like an empty shell, slowly collecting matter, but not enough to even see all that was amiss.   Trust me, it's strange.  My point being that making connections to things in my pre injury life, is a huge step for me.  I hope I can only look forward to more of it, as I put myself back together.

Forward Momentum?

Mondays are routinely, my only full day, of the week. As in scheduled events, I feel like I'm running from meeting to PT, to appointment, to grocery shopping, to Monday night Kirtan, every Monday.  The busier, more active, and more productive I am, the happier I am.  Everyday, I make more and more connections to who I was before this happened.  It's absolutely surreal, as MY previous thoughts, conceptions, and idea patterns return.  Sometimes I wonder about creators of this strange 1980's era Mel Gibson movie, my mom watched from time when I was young.  Mel gibbons body returned to life, after much time had passed.  It was a really strange sci-fi seeming concept, in those days.  I suppose my point is how I oddly tried to relate to that concept, but really couldn't.  I'm sure a lot of my inability to relate was linked to the lack of life experience I'd amassed by 9, or 10, or however old I was, but the uniqueness of that story has certainly stuck with me.

It's as if I maintained pieces, but, without the other pieces I cannot see the whole picture.  This injury feels truly bizarre these days.  Obviously, I'll never be the girl I was, and moving forward, ever sooo slowly, has enabled me to keep picking back up, and trying to move towards a better tommorrow.  In many ways I feel lucky, my brain was hurt so profoundly, over my heart.  My heart has faced rather aggressive abuse, both physically, and emotionally, in all this time, but it still presses forward strongly, allowing my mind to sauder itself back together.  I never, actually imagined the possibility of that, mostly as I could not recall, ecactly which traits were missing.  Somedays the good, the bad, and the ugly, appear so briefly, and I barely catch it.  Perfect doesn't exist for me, because I've realized every single person, has a different concept of their own perfect, so I dismissed the idea a long time ago.  So, I'll need to describe today, as great.  I made plenty of my usual mistakes, I tripped, and fell, walking on campus, but it didn't hurt, so I didn't care.  Then later, when I was repeatedly offered help, I gratefully accepted, instead of my usual,' no thanks, I can do it'. I'd really rather not have to fall to gain a brighter perspective, on others helping me, but today, it did the trick.

I decided to try another course this spring, at UVM.  It's been a solid 2 years since my last attempts, when I lost focus and the ability to visualize my objective goals, and started running again.  I'm sure I'll always be a space case, but I found the routine of school was so familiar, although, my former practices no longer worked, and the more trouble I began having, the less interested I became.

This winter/spring I'm challenging myself in a somewhat unique way.  Instead of health care policy, I decided to go back to basics, and participate in a public speaking course.  I'm hoping it may compliment my voice therapy well, and help me be less weird adressing larger groups of people.  Tommorrow, is our first go, at presenting to the class.  I'm talking about the culture, of running, and runners, as a sport I ve enjoyed thought the majority of my life.  It seems intimidating, the idea of talking to new people, especially, as I sound so different now.  Although, life is what we make of it, so I hope that taking this course will enable me to overcome my fears, and intimidation, in front of large groups.  Yay school!

Gimpy...breaking the big toe

Looks like my unofficial rights to injuring myself in truly unimpressive ways, will forever be a lingering quality, I posess.  2010 was a banner year for me, and my face.  I made double digits with the number of black eyes I got that year.  My vision still wasn't as great,, as I liked to think it was, so most often, I'd end up hitting my face, on something, I hadn't seen.  Although, here were at least 2 falls where I did face plants.  I used a lot of concealer that year, and usually the only people who realized were my roommates, or who ever saw me hit my face.  It was a banner year, for me, and my lack of coordination.  This year isn't off to a promising start.  No black eyes (yet), though, last week, I managed to cause a 15lb ball of iron, to fall on my foot.  I was putting a different weight back, and managed to push the kettle-bell off the shelf, that I was standing under, in the process.  It fell on my left, big toe.  In that moment, I realized 1) how forgetful I am, and 2) that I don't react to pain the same way, I used to.  I've actually done the exact same thing before.  Although, the last time it didn't really hurt so much, and I easily completed my exercises.  This time, I wasn't so lucky.  It hit me, and I thought, "Really, again!?"  and then the pain hit me, and I couldn't communicate, the tears just welled up in my eyes, and I used one hand to stabilize my self, and the the other, just shook.  People kept asking me questions, but I was having a hard time finding my words, besides yes, and no.  I'm probably like that, whoever I cause myself a lot of pain, but this time, I felt acutely aware of it.  It quickly passed, but I had a hard time dealing with,the onslaught of questions, and pain discussions.  Obviously, we all do dumb, painful things from time to time, but this was a repeat of something I'd done 3 weeks earlier, and it was worse this time.

Upon returning home, I put my foot up, and canceled my evening plans to attend movement meditation.  By the time 5pm rolled around, and the fierce pain continued to persist, even despite aspirin, I decided to go to the walk in clinic.  It didn't look broken, but it felt, as if it was, so I decided to aire on the side of caution.  I learned about a new kind fracture.  Apparently, I received a fragment fracture,where a tiny piece of bone, flaked off my toe.  They can't do anything for it, other than tell me the importance of wearing hard soled shoes, and give me a hard soled sandal to support, and protect the toe.  Obviously sandals are not ideal, this time of year, so I wear it at home, and tape other weird, crooked, overlapping toes out of way.  The doctor explained the fracture, but told me, it was likely the pressure, from the amount of blood under my toenail, was likely causing a great amount of the pain.  He explained his plan, to drill a hole in my toenail, to release the pressure.  I greed to it, but I could not watch him place the drill, and make the hole.  It wasn't really painful, but the idea of a drill, anywhere on my body, while I'm awake, and mentally aware, seemed disgusting.  Thankfully, he was right, it didn't really hurt, and the force pressure dissipated quickly.  It had been really strange to feel my pulse in my big toe.  Forget weird, it seemed disgusting, actually.  By the time I got home, and had eaten,mi checked out my foot again, and the swelling had drastically gone down.  It made me so happy, I had decided to seek treatment.

I miss the activity of my normal days, but, on the bright side, it's forcing me to work on my writing, and research of a plan for where, and how to move on, after the end of my 6 year rehabilitation program.  I won't have that figured out for a while, but need to find a fulfilling way to support myself, and leave the weight of public funding behind me.  I've appreciated the security it's given me, through rehab, and also the cogniscence of my dad, with regard yo orchestrating the programs, with the help of all the medical professionals, and rehab. specialists.  I feel as if I've lost the prime of my life, to this injury, but, I also feel there's a lot of my life, to reclaim, and build upon.  I decided 3 weeks ago, to go for a marathon, this year.  I became sick, the week after that.  I'd actually forgotten how terrible it feels to lose all of your energy, and will.  Misery.  I finally, felt like myself again, last week, and was 3 days into a perfect running week, when an iron ball hit my foot.  So, that's a set-back, but hopefully the pain, in my left foot disappears soon.  It's already, no longer resembling a sausage, although, it's a terrific purple color. I'm going back to PT Monday, and can't wait to get back to being more active!

These are the days...

I getting back to my old pace, at least in terms of cramming as much as possible, into my productive day.  Everyday, is of course, is diferent, but starting this week, with 2 productive days, has been amazing.

Last fall, I was nominated to serve on a state mandated committe, commisioned by the governors office, as the voting representative for traumatic brain injury services.  I came into the group well after it had begun meeting, but have learned much about health care policies, collective bargaining practices, even how inclusive the government system can be, if your willing to dig for what you need.  Today we met to vote on passing the recommendations.  For our group, it means we agree to submit the revised recommendations to the governors office.  Everything passed unanimously, and we went off. Into the world, after being hatsily removed from the meeting room, after an hour had passed.  My roommate/live in aid dropped me off for my next appointment, with my psychologist.  I feel like psychological help can be frowned upon, I know I was not all that open minded about it, for a long time.  Turns out, it's all in finding the appropriate personality to talk with.  Soon I'll need to begin the process of finding a new rehab. Psychologist, but now that I've had a good experience with it, I'm happy to continue on, with regular sessions.  I'm slow to talk about all of the strangeness I see in my injury.  Sometimes, like today, it's easy, things flow well, and I can easily remember things I want get some feedback on, like getting on track to how back to school!  All along that's been a huge goal of mine, although my interests have diversified a wee bit, by now.  At least it's still early in the year, and I won't have mak the excruciating decisions, until further down the road.

As soon as I returned to my apartment, I grabbed a lunch of assorted pieces, from the refrigerator, and donned a very fashionable running costume, of spandex, polyester, and down.  I was pretty excited to took my new ice bug sneakers on their first tun.  They have a carbon compound stud formation, like your snow tires.  At first it felt very different, and I didn't know if my muscles would relax into the motion of jogging, but after a mile, they did.  It was some nippy today, but having that hour in the sun, made my day.

After a bit of fresh air, it was time to go to class.  I'm taking a public speaking course at UVM, to challenge my own fears, about the quality of my voice, post injury.  It's enormously more clear, than it was 5 years ago, and I didn't even realize how indistinguishable my words were, for so long.  Talking clearly, and consistently, is still,, an enormous work in progress, but, like with everything, the more I do, the more I can do.  I suppose that means, there's always something to reach for.

The classes I've taken since my injury, have all Ben graduate level, health care policy based courses.  It almost feels as if I'm going backward, taking a speaking class.  But this is definitely, a major group of skills I lost, so I am moving forward, it just requires me to maintain a posive mindset.  Well, it's gotten me this far!

When my formal rehab program ended, I'd nievely thought it was time to turn the page, and move on.  Turns out, there's still so much I need to remaster, and the hardest part is that I'm not aware of what's missing, until I find myself I a new situation, with no idea, what yo do.  Thank goodness  for all of the people who're willing to help, every step, of the way!

The winds of change

I read the entire blog start go finish, last night.  There's a first time for everything right?  I never felt strong enough to, because I knew it meant un-burying my feelings about Sean.  I met someone last week, who'd read the blog beforehand, and said, "I have one question, I hope it's ok to ask?"  I nievely replied, "yeah, go for it!  The question detonated an emotional bomb, I had deeply buried.  It was, "what happened to Sean?" It caught me off gauard, and I kind of blankly stared off, before mumbling that he'd left in '09 to return to school.  The year after he left, I shut down, emotionally, and really couldn't afford to, as my own family was also going through drastic change.  Both of my parents, ended their long-term relationships, in a similar time frame, so, I needed to deal with amended families, and find a way to forge relationships with the step parents I'd loved for the last decade, or more.  That was '09 and '10.  I threw myself I to my therapies, to attempt to focus on something else, than that that the world, I knew and loved, had truly disappeared,all in the same time frame.  As I was learning to come to terms with the new family situations, my mom was diagnosed with breast cancer.  At first it seemed like, no big deal, she'd had it before, and no deeply serious repercussions.  This time, it hit her hard, she had a mastectomy, and underwent chemo.  I now feel like I understand what it was like for her to see me, helpless, with a squad of doctors, nurses,and therapists around all the time.  She had to give up a lot of things up, but she did manage to re-claim her lifestyle, and go back to work.  We all face setbacks, but these 2, back to back, were ruthless.  First me, then my mom.  When Sean was leaving, his dad had been diagnosed with cancer, also.  He ended up losing his dad, who was an amazing man, and I hope is remembered as such.  That occured after he'd left, but I rember getting an emaill from him, that struck me as though they were parting words.  I responded, but never heard back, and later heard of his passing.  We all had some extraordinarily difficult years in that time frame, and I never had to face my questions of what happened to us, because everything else became so blurry.  Now it's so hard to go back, and look at it, I can't bring myself to.

Sadly, today, Sean and I have little to no contact.  He responds to my requests for all the legal business my lawyer needs to cross off, with regard to the Yaz lawsuit, but I hadn't opened that door, until last weekend, and now, I can't close it,again.  Life is funny that way.  When things are calm, I find myself wondering if I'm standing in the eye of the storm, or if the winds of change, are actually coming to rest.  My dad was the rock, in the storm, after he split from Martha, he moved into the town they'd lived in.   He has 3 other young adult kids, and still managed to visit me regularly, and deal with much of my  state officiated rehab. Program.  Marty also remains a constant support, which has been enormously helpful.  Growing up, I was used to change, but losing all of my basic family entities in one foul swoop, looking back, seems just as bad, as losing my physical, and emotional  abilities.  Now, I've learned that I can't trust things will be the same, for any period of time, and that while family, and friends make the world a beautiful place, it can all I'll disappear, just like *THAT.*

My injury has taught me to look for the good in people immediately, because you can't take your time with them for granted.  If you love someone, say it loud, and proud!  If you appreciate something others have done for you, show your appreciation.  Life is subject to change, live in the moment, and be happy!

Guess I should get out there, and take my own advice! 

A huge thank you yo everyone of those  amazing souls who have  helped me along this path!   No matter how big, or small, your actions are greatly appreciated!  Love to all!

The Mondays!

Mondays are usually days I look forward to, as my schedule is often tight.  Pretty much only happens on Mondays, at least consistently.  My day starts at 9:15.  I see a professional voice coach, for help with clarity and volumes.  He's been in the business of traing singers, vocalists, and thespians the majority of his career.  Forme, speaking clearly doesn't come cheap, but I've been from speech therapist to speech therapist, over the last 5 years, and had reached a point where I was willing to look outside of the healthcare system.  My previous home care provider, Kathy, mentioned this guy in reference to her daughter, but wondered aloud, if I could benefit from working with him.  Growing up, I couldn't sing on key, to save my life.  I was immediately labeled tone deaf, and never thought twice, about it.  Turns out, I'm not tone deaf, more tone retarded.  I was never taught to listen to the pitch, and equalize my own voice to that tone, so I basically just sang out whatever, however it struck me.  Trust me, that approach isn't easy on the ears.  Therefore, the only time I sang was alone, in my car.  I will always miss the ability to drive, but even more so, I miss jamming out, to whatever I wanted, with no complaints.

Back to my story, with the Voice Coach, Bill Reed.  He doesn't have the medical background, SLPs do, but that may have been part of my previous difficulty.  Medically, my voice is healthy.  But my brain is not.  The brain powers everything, and it had lost the knowledge of how to move my lips and toungue to be clearly understood.  I made progress with my therapists, but nothing like what I've heard in the last year.  I still have a long way to go, but at least my basic toolbox, is better equipped.  The session usually begins with an informal conversation, where he asesses my ability to speak clearly, and then it launches into tonge twisters, and the auditory mechanics of forming different sounds.  I've gotten to place where I understand how to form the sounds well, and do so repeatedly, but when I'm speaking to someone, thinking about the conversation, and the fact that I need to get my toungue to the roof of my mouth, to form the S sound I need, and remebering to breathe while speaking, and pause appropriately, it gets to be a mess sometimes.  But, that is why I have to work on it.  Immediately after, I had a PT appointment downtown.  Marc, the live in aid who helps me get everywhere I go, which is a lot of random places, dropped me off, there.  If I don't clearly give a time, I need to leave by, I can be there for 3 hours.  I'm not sitting around, any of that time, either.  I often start off doing everything I can, indendently.  I need assistance setting some things up, but usually, I'm amazed by how smoothly things proceed.  Ray, the PT I work will often jump between multiple clients, at the same time.  In the beginning I did need someone to be around me, at all times, because I couldn't rely on my physical abilities, period.  Now, I need supervision, and assistance, getting myself through random obstacle courses.  Between the way I move, and the boxy things, I need to maneuver through, sometimes I feel like a character on Mario Bros, because I move so slowly, and I'm stepping onto platforms, and it's very boxy, like graphics in the 80's.  Chances are, you will not understand my comparisons, though that's just what I think of, when I'm nervously edging my way  on this rectangular platform, and cannot will my feet to safely move along it.  It might as well be a tight rope, somedays.

After, I competed all the exercises, I wanted to get on the anti gravity treadmill, and get my blood moving.  It didn't go well, and I gave up, at 2.5 miles.  Not my best workout, but, it all helps.

Leaving On Track, I managed to talk Marc (live in aid) into taking me to Burton, to replace one of my favorite hats. I had it around Thanksgiving, but I hadn't seen it since, so I wanted to try to replace it.  Major bummer,they no longer carry that hat.  So I got a different one, to have a winter hat, since I've lost all my favorite hats, I've had forever, in the past few months.  So bizarre, I'm normally on top of my game, with holding onto my favorite gear, I double check my pockets, and designated places for my stuff, but I've totally fallen off the wagon, recently.  Earrings, hats, slippers, all this extra gear is making me crazy.

After that, we headed back, I ate my lunch/dinner, of salmon rolls, and yummy banana cookies, my dear friend gave me the recipe for.  When I made them, I couldn't find the recipe, so I just tried to pretend I have a good memory.  Low, and behold, they had come out well.

At 6:30, a friend picked me up, to go to Monday night Kirtan.  Kirtan is basically yogic chanting.  The songs are in Sanskrit, but mainly contain the names of ancient divinities.  Like I said before singing is not a skill set imposes, but an old college friend introduced me to the group, and I was able to find kindly folks, willing to help me come along.  At first, I looked at as an opportunity to stretch, and exercise my vocal cords excercise my voice.  Over the past couple years, I've met so many, incredible people.  All approach life with a majorly plositive mindset, are open minded.  Sometimes there are disagreements, that seem oddly petty, for such aw ell rounded group, but, overall, it brings me joy to take part in this activity.  Monday night Kirtan is where I like to be, Monday evenings.  Tonight there much more discussion, and explanation, than usual, though it's always welcome knowledge.

Meditate on this! (Sunday Sits)

My common Sunday evening activity, for the last year and a half, is to attend a meditation group.  My friend, Anna got me into it.  She's a fellow brain injury survivor too, so it's wonderful to have a more positive, open minded friend to relate to, in ways most people can't.  We each have very different difficulties, but that's the brain for you.  She, and her dad attended each week,  and it interested me, listening to them talk about their experiences, so I tagged along.  Soon, I was hooked, and looking forward to regularly going each Sunday.  Each visit can be so different from the last.  Sometimes, I'm consistently attentive, other times, I'm off in la-la land.  At least I'm learning to study my thoughts, and sometimes pass on an opportunity to go, if my mind isn't cooperating.  That can be hard to explain, but if I can't focus on one task, start to finish, I know I will not get much out of practice. Today, I did my laundry, baked cookies, and made tuna casserole, at the same time, and surprisingly did not screw anything up.  Miracle.  I knew I would gave a posive meditation experience, because I'd been able to maintain my focus, and compete my tasks.  If I have day, where I can't compete a single task, then meditation us a waste of time, for me, and leave feeling devalued.  Though, thankfully, tonight was great.

 It's a great social opportunity, I meet new people each week, from there.  Tonight, they began with a new activity over dinner.  Each table had a card reading, 'What is the importance of mindfulness in ---?

My tables blank was environmental pollution.  It was a really great way to dispell social cliques, and we all had to discuss options, and decide on one key point to share with the group, as well as a relative question.  In the beginning, I thought it seemed a bit trivial, but as our group coalesced, it was quite interesting to try to integrate the different viewpoints.  When I'm there, I need to be more mindful of how loudly I speak.  I'm a rather quiet talker, and carrying on a conversation, with about 40 other people, also having discussions about various world awareness issues, isn't quite conducive to my intelligibility.  One thing I still can't seem to grasp, is why some people pick up on my speech, as if I didn't have an issue, while others need me to repeat myself twice.  The gal sitting directly acrossfrom me, had a pretty hard time understanding me, on the first try.  Oddly, the peole on my sides, responded to my statements or questions immediately.  Meditation is all about training your mind to focus, which is a key benefit, I appreciate, but either I wasn't focusing on my clarity, or she wasn't focusing on listening.  It just struck me, as unusual, as is, most always, everybody does or doesn't understand my way of speaking.  I know I still have a long way go go, but I was trying, and focusing on my ability to make myself heard.  Usually, I forget, but I was actively on top of raising my volume, remembering to speak more slowly, and moving my mouth to form different sounds.  Believe me, it feels overwhelming, trying to remember my statement, and each of my vocal maneuvers, to form the right sounds.  All I can do, is keep practicing.

Meditation practice begins at 6:30, and our meditation teacher leads us through a guided meditation. I would not have a snowballs chance, in hell, at sitting still, focusing on my thoughts for 2 hours, if the practice was not guided.  Even with the guiding, I occasionally veer off, and think about something completely unrelated, and lose focus, on the story, and group discussion.  Out teacher, is quick witted, and is often presenting us with deep, philosophical questions.  He also makes it common practice to share a personal story, or antecdote, and occasionally poses a random question.  This is usually, when I can't help myself, and good-humored-ly jab the discussion.  I just can't resist, sometimes.  Thankfully, he laughs, and quickly responds, which gets everyone going.  I feel so fortunate to have found such a positive,open-minded group of people, within this practice.  And learning to control my thought patterns, has become such a helpful asset.  Check it out, and look for a group in your area.