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Friday, April 22, 2016

Life, unedited

I was just going through old notes on my iPad, of which, there are over 100.  Some are things I wanted to research, to do lists, and many unfinished blog posts/writing ideas.  I easily have just as many draft posts on my blogger app.  My problem isn't that I'm not writing, I am, though, they've gotten darker than I ever intended.  Once I go to that darker place in my mind, my writing doesn't recover, to spin it favorably.  There are so many awful thing in life, it's all about balance.  Learning how to deal with, and accept my life now, has not been easy.  Neither is admitting that.  Frankly, I've written this blog to remind myself of all the wonderful things I do have in life.  Although, I find that as more time passes, I'm no longer satisfied with pursuing adaptive recreation, as a chief source of activity.  I'm closing in on 9 years post injury, and find myself facing this ever growing fear that I'll never find my way back.

The crazy thing is, the more time passes, the more understanding I gather of the impact of my injury.  In the early years, I was very much like a young child, being that I wasn't able to understand the gravity or impact this injury would have on my young life.  In the rehab hospital, Sean once asked me I wanted to drive. I did, but I was about 90% blind at that point, which I now realize is something I rarely talk about.  No one could understand me then, and I was never alone, but I still remember the first thing I recognized visually.  My knees, in the bathtub.  My mom was there, but I'm not sure she even understood why I was so ecstatic, in that moment.  Very slowly my world began to piece back in.  I recently had an MRI, on looking. At it with my neurologist, he said, 'See where it's dark?  That's your visual cortex, I'm amazed you see at all, let alone as well as you seem to.'  I've always understood that I'm now visually impaired, but hearing that was really tough to swallow.  I'd gotten so used to steady improvement, in nearly every area, in the first 5 years, that finally having a doctor say something that definitive about my injury, was like a kick in the gut.  The past 8 years, has been, 'I don't know' or 'It's possible...'  Early on, it was miraculous that I survived, but now, this is my life, and I feel as if I'm barely on the edge of understanding it.  More frequently, I have had bizzare realizations, like mow impaired my perception of emotions had been, which, frankly was great.  Or every day things, like how much easier keeping my apartment clean is, if I keep up with it daily, or little social things, like responding to messages in a timely fashion, so I don't forget about them.  That's the  other thing about my vision, my visual memory is now terrible.  I'm usually okay withe things I see, and hear, but just seeing, like faces, pictures, directions, posters, it's all lost on me, as soon as think about something else. It might resurface, but I can't count on it.  Hence all the notes, I then forget to read...

Now that I'm finally beginning to understand my life may look like this, from here on out, maintaining my positive energy, and enthusiasm, has been more of a struggle.  On the upside, I always knew the day would come, where I'd have to learn to understand, and accept my differences.  Now that I've been struggling with that, it's way too easy to give in to the dark, soul wrenching disappointment.

I know life still has its beauty, strength, and motivation, but feeling like Humpty Dumpty, who fell off the wall and shattered into a million pieces, isn't a thought I can shake, now.  Slowly, way too slowly, I'm getting put back together, but the emothion is catching up to me now.  Time to get back on the bike more, keep running, and attempting to stay busy.  Being outside, has always been my way out.

Last year, I applied for accommodations, on the GREs, the entrance exam for most graduate programs.  My ultimate goal is to study public health, work towards changing our countries demented public health care programs.  I wanted to get my graduate degree in public health, as soon as I managed to pay off my undergraduate loans.  Unfortunately my cardiac arrest, and resulting brain injury postponed that goal.  Then, I had hoped to work internationally, and learn about healthcare from a more worldly perspective.  Although now, exploring third world countries, and their healthcare management systems, just seems out of reach, in terms of remaining safe.  Back to the GREs, my accommodations were denied because I didn't have current medical evaluation, outside of 2 doctors letters documenting the scope of my needs.  They wanted definitive testing, which I had get a doctor to prescribe, and later evaluate the testing.  In January, I did that.  The evaluation indicated that accommodations are necessary for me to have a chance of scoring remotely well, but I'm still pretty angry about the expense, and frustration of the whole experience.  I submitted the results a few weeks ago, and have to wait 6-8 weeks to find out if I have fork over another $150 to actually schedule a test date.  When I think about hpthe fact I'll also have to create a way to pay for school, without the help,of federal aid, it almost seems too daunting.  My undergraduate loans were forgiven, due to the severity of my I disability.  Although, there is a clause where one cannot borrow again, without reaqquiring the original debt.  Oh well, one step, at a time.  I can't seem to find employment worthy of a high school grad, let alone a college grad.  I have worked unbelievably hard to be where I am today, though lately, it's been more, and more difficulty of stay positive,  because each time I succeed at one thing, something else kicks me back a few steps.  I want to look at the world, and see all the opportunities again.  I was pretty good at it for quite a while, and then I hit this wall, and my goals began to seem less, and less possible.

I don't enjoy being open, and honest about the crap I face in life.  But, then I remember we each have our own struggles, no matter what our circumstances, and that I really have to thankful for where I am today, because, as slow as rehab is, fate brought me back.  Not exactly how I would've liked. Then again learning about, and participating in adaptive recreation programs, has been a true gift.  Ive had to learn to accept that I can't participate in most our door activities, with out the help, of an able bodied person.  That's been hard to accept, at first, but if it's the difference between participating in something I love, or not.   Because I'm too stubborn to accept help, I had to force myself to accept that my vision will likely be a limiting factor for many of the things I love.  What I see, isn't the problem, it's the delay I have in processing those images.  Sitting writing, is fairly normal, because there's no movement.  Out in the word everything is moving, and the extra second, or two, I need could bedisasterous, and has been if I don't slow down, and be mindful of my environment. On the upside, my hearing has attempted to compensate.  Which is amazing, consideringmy younger selfs enjoyment of hard rock, and some heavy  metal concerts.  So fun:)

In conclusion, I'm still fighting my way towards my goals, despite consistent frustrations.  Although, if it was all easy, reaching our goals wouldn't be such achievements.  And that's my wisdom for today...



Sunday, February 28, 2016

Head-Space

Today was my average ho-hum day.  I made veggie soup in the crock pot.  It turned out well, though I can't ever seem to get the cous-cous I add to soften, and take on liquid.  I thought if I put it in first, it would have no choice but to soak up the broth.  Sadly, no, and there are now weird couscous flecks in every other bite.  This is clearly why I am not a chef.  I like to cook, but I often just throw random stuff in a pot because it seems like it would be good.  Over the years, I have learned that recipes are important, because different floods mix, and cook differently. In any case my bean, beet, carrot, couscous soup did eventually become edible.

Yesterday I downloaded the NPR One app, mainly because I'd heard good things, but also because the name of it reminded me of Britains radio one, whose music I generally appreciated when I lived in Sothwest England, working for a professional equestrian.  Music becomes so close to you, when you spend all day interacting with, and caring for horses. At least, speaking for myself, I looked forward go the music, the news segments, and all the other rubbish.  It paced the whole day.

Honestly, there's not a ton of music, unless you configure it to play music based podcasts, but, so far I am appreciating listening to it, more so than the actual radio, even.  Although my lock radio from the90s,mrecently quit, so I no longer poses a functional radio.  I used to only listen to the radio in the car, but losing the ability to drive, from this brain injuries impairment of my visual processing, also curtailed my radio exposure.  

Moving on, I acquired a ride to the Sunday evening meditation group I take part in.  My friend Anna brought me to it three years ago, and the organization that puts it on, Center for Mindful Learning has expanded greatly in that time, however the community sits are still brilliantly informative.  There is no choice but to focus on myself, thoughts, feelings, and emotions.  As someone who intentionally ignored my emotions, in my pre-injury life, learning how to deal with everything I'm now afflicted with in a more positiive, nurturing format has been very helpful.  So has keeping regular appointments with a psychologist, though, in any case, it does take a lot if work to maintain and redevelop a positive headspace. Running, and playing outside is also crucial, but that's more because it was engrained in my being, already.

I rarely reach a moment,me here I experience an epiphany, or any type of lesson, thataligns   directly to my self, in present state of being.  Tonight Soryu, our meditation guide, was talking about a mythological tale from mans very early days.  He repeated the phrase 'hear, see, feel' several times in context.  Some cave woman piece of my brain grabbed that, and began finding the words to a song I'd listened to so often, in college.  I immediately had this hilarious image of my closest friend from college, and her boyfriend rocking out to one his favorite heavy metal band.  He would so often raise his pointer, and pinky fingers, thrust his hand above his head, and shout, 'Heavy Fucking Metal!' as if his gods were speaking through him.  And the lyrics to the song I was thinking of, came to me.  'Hear no, speak no, feel no evil.'  Tonight's meditation was so helpful for me, in that I found another missing fragment of my former self, in the rubble.  My brain is always developing, and creating new connections.  In the first few years, I found random pieces of my former identity, quite often, though clearly there are still outstanding holes, whereas these memories are usually triggered by the people in them, or when someone is taking about it.  These days,I look back on college, as a different lifetime.  I may still live in the same city, and have retained many friends from those days, but life has changed so much.  Clearly, acquiring a brain injury  was not in my life plan, but learning to live with a disability is something we never plan to have to do.  Life happens, and you either learn to pick up, and take it on, or you get crushed in any number of ways.

And this is my headspace, after tonight's practice.  It's not always productive, or direct for me, but who knew my former heavy metal rock appreciation, would still serve me, and in my meditation practice?

Monday, January 18, 2016

Happy Martin Luther King Day!

Happy Martin Luther King Day!  This is one my favourite federal holidays.  Feeling slightly ashamed, because I had completely forgotten today's the day to celebrate diversity, and was in my kitchen making a big mess, also cookies, and a casserole. The mess was rather catastrophic though.  Some days my mobility is terrible, today was one of those days, where I'm unsure of my motions, and because I don't mentally trust myself to have any physical competency, some days, my muscle spasticity is all the more debilitating. Idecided to make cookies first, and while foraging for the necessary ingredients, in realized I had the casserole ingredients as well.  So exciting...

My roommate helped me use the oven,as I was so shaky.   Although when the casserole was done, I pulled it out, and promptly dropped it.  Earlier, I had spilled coconut oil on the floor, and now green bean casserole. It was. A bad day for the kitchen floor.  At the end of the day, I feel more like I was bitch-slapped by my diversity, than able to celebrate it, but that's okay, because tomorrow is another day.  I hope that others were able to have more fulfilling holidays than mine was.  I also wish that the symbolism behind this holiday was more widespread.  A couple years ago, I went to a community event where people came together on a variety of volunteer projects for the local community.  Seeing people come together for the United good of their community, was so moving, and have this holiday  true meaning for me.  Until then, I had never really understood the symbolism of the holiday before.  Bringing people together to contribute to greater good of a community should be a WAY more central idea.  Go Vermont.


Happy Martin Luther King day, all!

Monday, January 4, 2016

Testing! 1, 2, 3

Neurological psychology testing!  What is that, what does it mean?  It's a standardized method of testing, designed to measure changes in the cognitive brain.  Its also an indicator for areas where I may be in need of assistance.  I went to Dartmouth-Hitchcock medical Center, 6 years ago, for the same testing.  Today, it was not a necessity, though it does offer a method to track my progression over thee years.  I had requested this testing last November, after being charged $100 for a rejection of academic accommodations to give myself a fair shot at the GRE,ma standardized test required by 90% of graduate programs in the country.  I always had wanted to return to school, to study public health, and policy.  Over my years in rehabilitation I've made an effort to take assorted classes, and take board seats within orgazations that picqued my interest, and could help me try to stay current.  Being denied accommodations last year, threw me into a tail spin.  Getting it all together to submit, had been a trying effort, and it never occurred to me,my request for extra time and a touch screen keyboard would be denied.  Apparently the clinicians letters were too vague, and I needed supporting evidence to validate my my injury.  This was when my psychologist suggested a means of current testing, among the suggestion of finding a program at UVM, so I wouldn't have to deal with it.  I asked my neurologist for a referral, and found myself in 'The memory clinic' today, for 6 solid hours of trivial testing.

I walked in, stack of paper work in hand, and found myself in a nearly empty waiting room.  I took enjoyment from the variety of unique phone calls, the receptionists took.  I counted 3 different calls for cancellations in the ten minutes I waited.  Only then did it occur to me how difficult it is to admit to a mental difficulty.  I'm forced to wear it like a badge, all I have to do, is speak to anyone, or walk around.  The only time it's less apparent is in my writing.  Although, the fact that my blog pertains to my experiences adapting life with an anoxic brain injury, is a dead give-away.  For others, whose families, or medical practitioners have set up an evaluation at a place called 'The Memory Center' I suppose I can envision why voluntarily coming in could be frightening.  Any kind of memory related diagnosis is unbelievably frightening as it requires one to deal with it, and accept that life has forever changed.  They really should rename the office, was my final conclusion.

Upon Bering called in, I sat down with a friendly doctor who asked me all about my life, the people in it, how satisfied I am, if I have enough emotional support, all fun conversation topics to discuss with a new doctor.  Eventually we got into the first portion of the testing.  Much of it related to listening to paragraphs, and responding to questions within the stories offered.  I if remember that I'd found the test somewhat demeaning in 2009.  After stating that, I'd told that this was a standardized test, meant for me greatest marorority of the population.  I still have unpleasant remarks about this, but I'll keep,them to myself.  I even said that to the woman interviewing me, which I immediately regretted.  Sometimes I'll hear myself being rude, and wonder if I've developed a problem filtering rude comments.  Then again, I also wonder if it's a horrifying norm, I'm adapting to, without notice.

I was sincerely grateful for the lunch break.  I could hear my stomach growling in the quiet office, and took out my meager snack lunch.  I felt very underprepared for my day, though I had believed I would have enough time to walk to the othe building, and buy food.  In 20 minutes, I'd barely have time to walk there, let alone eat the food I got, and walk back.  So, that did not work out well for me, but at least I had some food with me.

The second battery of tests focused more on recalling lists, mathematical  word problems,  and a visual  memory test of various deigns.  I know I have a visual memory problem, so that felt very confusing.  The idea of the math problems concerned me, but they were quite simple.  I also had to organize tiles to match a paper diagram.  That felt difficult and tense in the moment, but wasn't as problematic as I'd anticipated.

At the end, there was more paperwork to do, concerning my mood, anxiety, and depression.  It seemed like a horrible questionnaire to send people home on.  In my opinion, it should be given first, so that if you are experiencing depression, you don't have to go home and stew over it.  
When I finally left, I needed groceries.  I don't like to grocery shop when I'm hungry.  This never works out well for my budget.  Before I checked out, I want through my cart, and easily put back 1/3 of the cart.  This is why I don't like buy food on an empty stomach.  Although, I'm sure the grocers encourage this.

Super Sunday

It never ceases to amaze me, how my productivity varies day to day.  At first, my day had seemed throughly wasted, probably because I never made an effort leave my apartment.  I'd planned to go to the gym,and take myself to see the new Star Wars movie.  Instead I unpacked, and organized my living space.  I am always stupefied by the amount time this takes me.  No wonder I detest organization, it's inconceivably time consuming. Oh well, such is life.

Today, I'd actively searched for a ride to Shelburne to a place called All Souls Intwefaith Gathering, for a New Years service, and Kirtan gathering.  I rarely write about faith, because we all subscribe to different beliefs.  I often reserve Sunday evenings for guided meditation, which serves as my path for a belief system.  I love the stories that are offered within different faiths, although, the idea of subscribing to one omnipotent being has never been in my personal realm of plausibility.  We're all different, and for me, having the opportunity to understand and develop a system of beliefs that I want. To subscribe to, has been instrumental in allowing me to work towards my goals in the presence of people who have faith, but are not compelled to tell me how, or why I was saved.  My feelings are lets keep,our Faith's to ourselves, unless sharing a designated space for practice.  It's taken much of my lifetime to approach the topic of fath, but finding spaces where kindness, morality, benevolence, sand reason can intersect, has been an amazing piece of my journey.

I had never been to this location before, but had adopted Kirtan into my spectrum.  A buddy from college brought me to a different group 3-4 years back.  I'd found a generous neighbor willing to bring me, regularly..  Over the years, the group has transformed and been rebuilt several times over, although the community aligns common faces I've gotten to know over the years.  I

 had posted my request for a ride, and was losing hope that the community would come through for me until my friend Matthew called to offer a ride.  We had recently talking about his yoga therapy practice, so I was not expecting him to offer me a ride.  I love it when people surprise me with commonalities I hadn't expected.

In showing up I got to chant, which I've learned to love over the years, because can raise my voice, and not be stared at with a blank look of, 'I have no idea what you just said.'  Everyone chants, and there is no judgement over anyone, or anything.  Except where concepts of poor moral conduct are concerned, then it's like any other group of people.  If you misconduct yourself, you'll be banned, and if you consort with the banned party, you're likely to be ostracized, until they get over it.  It never ceases to amaze how terrible anyone can be, if they think they're doing something for the greater good. My previous inability to understand the intricacies within this group, made me give up on them for a short period, although once I was able to understand varying points of view, I returned, albeit somewhat gaurded.  As the group hanged hands, and brought an influx of new faces, I relaxed, and came to appreciate the collective group again.

Finding faith is precious to all.  For much of my life, I swept the concept aside, because I'd always encountered bad people, who used their religion as a sheld to protect their own interests. In the years since acquiring a new identity, with different abilities, I have been blessed by countries strangers, with  their kindness, generosity, and gratitude, as well as by their own faith(s).  

I was just so,overjoyed to return to a sacred space, among so many friends, who were present for the spiritual chanting ceremony, and blessing of the new year.  After the hour long ceremony of call and response singing, the larger group adjourned, and a smaller group remained.  At this point, chants I'd grown familiar with, were offered, and the energy shifted from what felt like tentative, to joyous.  At the end of the day, I really am unsure where I personally stand among these souls, and the variety of beliefs that have acquiesced there, it just doesn't seem important.  

Saturday, January 2, 2016

Bumps in the road

I think a big piece of why I stopped writing was insecurity, and well, just lack of ambition.  Finding fulfillment has been a relentless effort.  I  know of a lot of people, friends, family, acquaintances, colleagues, et cetera, all have needs from their relationships with others.  At 23, when my heart stopped, and I acquired this brain injury from lack of oxygen. I had to start over, on my end, with virtually everyone I'd known.  Every day in the hospital, it seemed people were compelled  to ask if I could remember them.  Usually, the only people I couldn't remember were the hospital staff, and friends I'd made in the past year,who were all new to my life.  To be fair, I needed  clues for a lot of people who were new to my life.  I also wasn't able to recall recent events, or where I was, or what had happened, early on.

It has taken me a long time to identify with 'trauma' in traumatic brain injury.  To me, trauma implies physical injury, or blood, and guts.  My injury was devastating, but also quite passive, on the scale of being particularly gruesome.  I've had no viable way to gauge my injury, or really my progress over the years.  Clearly I've made tremendous strides, but, as they say, EVERY brain injury is different, as is every brain.  Needles to say, the time and energy to relearn your life, physically, and emotionally is overwhelming.  At first, it was relatively simple, and genuinely didn't seem to be that massive a task.  Life had generally taught me that if you work hard enough at something, you will realize your goal, within reason, of course.  So, it made sense to me that the same should hold true for a brain injury.  I could retrain my neuronal pathways to overcome my 'disability'.  Learning to accept a new identity as a handicapped, or disabled person is not the easiest task.  To be honest, I still don't look at myself with those words.  I'll say differently abled, special needs,,accessible, and/or unique needs.  I find the term disability somewhat alienating, most because people who don't identify with the label are afraid of it, in my experience, anyway.  Afraid in the sense that they cant relate, and are unwilling to try.  Obviously, all people are different, though I allow myself one rash over-generalization per week.  So, it's like feeling as if everything is nearby, but just out of reach.  To be clear, I have continued to grow, learn, improvise, and Chang in the years since.  Just not always in the ways I'd envisioned, or hoped.  To be alive is to be in motion, whether physically, mentally, or both.  We are all working towards things, whether it be the Nobel peace prize in astrophysics, or obtaining our next meal, is all about the perspectives each of us take. My point is, everyday is vastly different from the one previous.  Some days I am inspired to share the vivid details of the unique life I've acquired, and created, with your help, whist other days it feels there is very little reason for life.  I was always a logical thinker, I liked science, and non-fiction literature. It's just the space I occupy, and appreciate.

Having an acquired disability will always be a curious lot in life, although learning to appreciate the differences in those around us, seems like the first of many steps in the right direction.

Friday, January 1, 2016

One-a-day~ Bringing it back!

I have let myself fall off the wagon, with respect to writing.  When I left the TBI rehabilitation program a ways back, I stopped making myself write.  This life is so full I now feel not documenting the details was a mistake.  So, here it is 1/1/16, a new year, brimming with possibilities, and new experiences.

Cheers, love, and gratitude to all of you who've stood by, to not only for the big events, or strange traumas, but also for the little everyday stuf, and of course, the big adventuresf.  No doubt about it, life is a long, strange journey, full of ups  and downs.  Though, through all of it, we have each other, our perseverance, and our beliefs to hold onto.  I am looking forward to the continued rebuilding of this life, and all it has to offer.  I hope we all can make light of the opportunities life brings this year!