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Monday, May 26, 2014

Marathon madness

Vermont City Marathon, what can I say?

The organizers an volunteers put so much into pulling off this fantastic event.  I'd signed up to do the final leg again this year. My dad came out to participate, and be my safety net, if need be.  On Saturday, we attended the race expo.  The highlight for me was attending a talk by Colleen Kelly Alexaner.  She was hit by an 18 wheeler, while cycling, and is still out there pushing her limits.  Se also survived cardiac arrest, though hers were due to dramatic blood loss, whereas mine was due to enzyme imbalance.  By no means do I envy her story of survival, though I'd love to be able to say I got a brain injury from being hit by a Mack truck, no, 't I have a brain injury because I didn't put enough consideration into the contraceptive l took (Yaz), and it caused my heart to stop, and deprived my brain of oxygen.  People stare blanly for a reson, it doesn't make sense.   I have the least cool or badass sounding reason for a brain injury. 

 The next morning, my dad and I convened at the gym where I do PT, to get our bibs, and make a plan with the other teammates.  After almost an hour passed, we bailed to grab a 'super healthy' pre-race breakfast at the Skinny Pancake.  If I ever get to the point where I'm able to push myself aerobicaly while running, I could never go out for breakfast pre-race, though a 4.5 mile jog, I could handle my egg and cheese crepe, and feel alright.  However, there was a door handle incident, I did not handle well.  I was returning from the bathroom, and as I opened the back door to go  into the restaurant, the guy behind me rips the door out of my hand, I assume in an effort to helpful.  However the way my wrist was aligned with the door, it became jammed in the handle, and was dragged forward unexpectedly.  Serious pain.  I instantly had to resist the urge to start blindly cursing, as the pain hit, accompanied by a bizarre tingling.  The guy apoligized but I was already crying, and hoping I could still push the jogger with it.  Thankfully, the initial pain dissipated as we got ice on it.  As we left, my dad wrapped the wrist in a towel.  As I'd forgotten sunscreen, I received a pretty special tan, resembling a gauntlett.  Good stuff, I'd forgotten how much sunburns suck, I can't remember having a burn that aggressive.  Oh well, lesson learned, always have sunscreen on hand.

We waited at the hand-off area for nearly an hour.  Just as I decided to visit the bathroom again, they came in.  I was pretty mad at myself for not going earlier, not a great mindset to start off in.  Most of the runners who passed were toast, and unable to respond to encouragement, or questions.  Though a fair number encouraged me, in passing.  Much of the final leg is on the bike path, next to Lake Champlain, which offers a slightly cooler breeze.  I imagine we finished earlier than last year, as there was still pizza, loads of food, as well as free massages.  I felt sheepish approaching the massage tent for running 5 miles, but they weren't busy, and willingly accepted us.

The glory of doing the last leg, was realized by me for the first time this year.  I'm not great at dealing with crowds, though I did see several local college friends, which made it super exciting to catch up with them.

As things started to look like they were wrapping up, we took my friend Ann's offer, to come over, and visit.  I had to resist the urge to mock the 19th century hand powered mower she was using.  It's actually brilliant as there are no emissions, and you, the user, is the only power it requires.  I love that it's her choice of mowers, but I still want to mock it.  So badly.

In my true form, I neglected to lift my foot high enough to compsate for the door jam, and fell down.  Thankfully, Ann has known me a long time, and is used to my clumsiness.  She and my dad pulled me back up, and we continued inside.  I listened to shop talk about home renovations.  It was somewhat amusing, as they are each so humble about their accomplishments.  I suppose we were all well matched in the clumsiness department.  I often forget how easy it is to hurt yourself, for anyone.  Probably because I happen to do it so requently.  I generally wear clothes that cover my arrays of scrapes and contusions, so people don't have the opportunity to realize how often I fall, or walk into things, or anything else. My least favorite part of summer, is the number of concerned comments, or questions I get, regarding my minor injuries.  Although I appreciate that people are concerned, because it reminds me of my own idiocy. I don't generally respond to the concern, as well as I should.  I'm relearning or attempting to receive these questions more gracefully.  In 2011 I managed to acquire 11 black eyes, many fom falling, and not having the reaction to put out my hands.  That's a learned physical reaction we acquire to protect our faces/heads.  Trust me, that was not a fun reaction to learn to reacquire.  Although, everytime I fall now, and my hands go out, I'm beyond thankful for the brains plasticity.  

In conclusion, it was a fantastic race weekend, I got to see my family, and old friend.  I got to be part of  a great race, and meet some incredible people along the way.

Saturday, May 24, 2014

Freaky Friday

What a crazy, random day.  I puttered around all morning, retrieving items my mom left behind, cleaning the cat box, finding inventive ways to use my busted blender, until my friend, and meditation guide, arrived to lead us in an hour long practice.  She also confirmed the possibility of center for mindful learnings potential move.  Could be as close as Hardwick VT, or as far as California.  Neither  of which I can access easily, so we discussed our concerns, surrounding the issue.  I couldn't help feeling-like the world to which I'm currently accustomed, is falling apart around me.  I've already beenthrough looking for a new psychologist, now I'm facing a transition of physical therapists, and losing mindfulness practice. I know I'll survive, it's just upsetting yo loseactivities, and people who've improved my lifestyle profoundly, at the same time.  I have to think, if Anna can approach her unknown transition positively, so can I.  We parted ways, and Marc brought me to the  brain injury support group I facilitate downtown.  I was ill prepared, not having thought of any potential topics,mand was so relieved only 1 person attended.  An hour or so passed vrybquickly, and as I returned to the tiny city I live in, I went into a hysterical fit of excitement, as I received a message from one of my favorite people.  I gave him my address, and happened to catch sight of him outside.  I hadn't seen Ian since 2006.  Way too long!  Time flies, because despite our ridiculous tales, of life's bizarreness, and being relatively out of touch for nearly 8 years, our friendship hasn't changed.  It's really hard to make that statement about anyone, especially when you've acquired my ridiculous brain injury.  I got to live vicariously, in hearing all of Ian's ridiculous, testing, yet exciting adventures serving peace corps, and working for the forestry service.  I talked  about some successes, and pitfalls of my recovery.  Mostly my adaptive trips, absurd caregiver dramas, and tried to update him on the history of mutual friends.  He'd been trying to catch up with other local friends, so we soon headed downtown, on the city bus.  He admitted to never riding then in college, although, I never did either, and immediately felt a pinge of frustration, and resentment of my injury.  My visual processing still prevents me from even thinking about driving, an ability I once took for granted.

We got off, and walked the block over to The Farmhouse, to meet Meredith,, and her adorable 18 month old, who was unbelievably well behaved.  I asked the server to put a rush on the fastest burger they could push out.  I got a quinoa burger, and classily munched away, while shaking my head to answer certain questions.  I ventured out of my realm of comfortable beer choices, to try my standard half pint, of chocolate coconut stout.  Didn't know if I could handle the harshness of a stout, but apparently chocolate and coconut flavoring, make it tolerable.  I felt like a jerk leaving early, but I'd committed a small gathering, where I do PT, for a going away party for the therapist I've worked with for the last year and a half.  I went to be supportive, even though I expect this to be a difficult transition.  I can't be upset, I'm used to finding people that I make incredible strides with, until they leave.  I've lost 3 in the last year, although, the first was the most difficult, as she, my occupational therapist, passed away from complications of cancer.  The next was my last psychologist.he transitioned to a different job.  It's easy to get attached to the consistency, of people you have a good connection with.  Everybody makes their own progress in life, so while it's a bummer for me, I'm surprisingly happy for him.  I had totally forgotten how awkward I used to feel walking a party alone, even though I knew most everyone there.  I think going helped me gain closure, or made it seem more real.  It seemed odd to see everyone I normally see in gym clothes, all in normal street clothes.  Out of normal context...

 I was really surprised to feel so bitter, as it's not usually my MO.  Then again, it had been a lot of things for me to proces in one day.  My mind was still in shock from the day before, where I'd learned what happened, when my parents were divorced  25 years ago.  I guess it's mind blowing information, to revisit events from 24 years ago (damn I feel old writing that sentence).My mind was more than I could handle, so when one woman was slightly rude, and I started to feel uncomfortable, I decided to rejoin my friends from dinner.  We all sat around their place, and listened to Ian and Phillip swap personal slaughter stories.  Phillip is a local chef, and restaurant entrepreneur, and Ian served in the peace corps, so they each had valid interests, and needs for the experience, however disturbing it was to hear about.  Time passed without notice until my phone rang.  I answered, and my dad says, 'uhh, where Are you?'  I totally felt like a senseless kid, in that moment.  He was brilliantly understanding, and came over to collect me.  What a full, crazy day, complete with old friends, and family.

Monday, May 19, 2014

The rule of 3's

Each day always holds some awkward seeming situation for.  Arrarantly that's how I roll, and I can't even blame that on my TBI.  Wif Theresa way to appear more foolish, I can always count on my ability to do exactly that.  May as well find humor in it, as there's no better alternative.
Firstly, I'm at voice appointment, working with a voice coach, to help me focus on forming each syllable as I speak.  It's as if I'm learning to speak, physically.  I have all the words in my head, but my physical ability to spit them out clearly, in a way that others understand, was extremely compromised.  It's like any other motor skill I have to rewire.  It's frustrating, forcing my body remaster the simplest of tasks, like speaking clearly, walking, running, tying shoes (I still avoid that), even cutting, and preparing food.  I have always been a klutz, so it's no so different in that respect, it's just worse, and now I have to train my brain to control my motor skills in ways I learned to at 4 or 5, when I had much less to worry about, or even realize I had to control.

Bill Reed, the voice coach I work with, has helped me tremendously in the last 2 years.  His background is training actors and singers to use their voices more effectively.  It seemed like an expensive reach, when  first I heard about him.  Though, after meeting him, and beginning to work with him, I even noticed myself focusing on clarity, and volume more consistently.  He often provokes his students in a good natured manner, which makes it a bit more fun.  So he gives me a voice excercise today, where he says 'poopoopoopoopoopoopo', and I'm supposed to repeat the excercise.  Instead, I collapsed in a fit of hysterics.  Apparantely I couldn't handle the 5 year old potty humor, and was unable to control my laughter.  He's a good sport, but in a professional setting, I felt like such an oaf for losing my cool, because somebody said poopoo.  Off to a great start...

In my next appointment, PT, I had a sleeveless shirt on, and had already completed a couple exercises, when my therapist walks over, and says, 'uh, what's going on with your shirt?'  Automatic response is to look down, and verify nothing is exposed, even though the mirror had done that for me, not 20 minutes before.  Plus, a sleeveless T, seems difficult to put on incorrectly without noticing.  Although, if anyone can do it, and not realize, apparantely, I can. Seems pretty straight forward too.  Oh well.  Not even noon, and I'd managed to  embarrass myself twice.  Excellent, however, par for the course.

The last shaming moment of the day was primarily self inflicted.  I was out for a jaunt on the bike path, which was unpleasantly busy that day, as it was about 75 and sunny for the first time in months.  I'm trying to make myself jog on the causeway, which is  a 2 bar fence between a ledge, and water (the lake).  I'm always more nervous on this part of the bike path, as it's rather narrow, and I don't move fast enough to avoid cyclists.  Also, I lost the coordination to swim, so being a foot from a ledge, and water, isn't all that relaxing.  I'm picking my legs up as if I'm jogging, though my speed seems to be around -2.5 mph.  I reach halfway, when a cyclist flys by, inches from me, and yells, 'HI COURTNEY!' While passing.  I have the worst fear response, I freeze, and become totally stoic.  I often fall over because I freeze in some totally awkward position, though, I DID NOT this time!!:). I tried to commend myself for not falling, but the flash freeze response to fright, just pisses me off.  I don't understand why my body has evolved to basically do nothing, in the face of danger.  Ridiculous, and trust me, a great way to get road rash.  However, not today!

Yet another ridulous day in my bizarre world...

Friday, May 16, 2014

What is mindfulness?

This morning I met with a long time friend, and fellow brain injury survivor.  She went into a residential mindfulness and meditation program, about a year ago. I still see her often, when I go to meditation practices.  Her parents are incredibly committed, and attend nearly all of the community sits (guided meditations) offered.  Whenever they go, I usually have an opportunity to go with them.  The practice of personal meditation does not come so easily for me.  Though, I've found the guided practices extremely beneficial.

  Anna has offered to meet with me once a week, so we can do a more individualized practice.  Today, we were outside, by the river, and two commonly used meditation phrases came, 'hear in,' and 'feel in.'  I've always appreciated hear in, because it requires me to take notice of my physical surroundings.  I appreciate the reminder that we are of animal ancestry, and have keen senses, that are so often diminished by the technology we are using all the time.  For me personally, I also appreciate it, as it gives me time to reflect on any changes in my body.  Feel in, I'm not a fan of because I'm supposed to process my feelings, of the moment, of the past, whatever arises.  Personally, I don't like dealing with my feelings, I don't know if I ever have.  I'd rather pretend they are not there.  Good, or bad, it doesn't matter.  Being so active has always helped me with that.  

After our first session we were reflecting on things that came up.  I said I felt frustrated with where I wa/am in life, and not knowing how to move on.  But, eventually I said I was angry at myself for allowing the gynocologist to coerce me into not only taking Yaz, but to continue using it, after I was unhappy with the side effect of nausea.  I didn't want to feel in, because I feel like crap on the inside.  I try not to reflect that, but I want my independence back, at least financially, and physically. I hate not having an 'intellectual'purpose'.  I need tangible goals, I'm so tbored with only focusing on my rehabilitation, at this point.  See, feel in brings out the demons, but at least I was talking about them.  Word is, admitting your troubles is first step to quelling them.  We shall see.  Meditation can be so difficult sometimes, but it has helped me pick myself back up, and keep going, time, and time again.  

As we shared our experiences, Anna's  response to my feelings, put me on edge.  She said, 'I'm sensing a lot of rage in you.'  I had to brush it off then, but that was like a trigger word for me.  I just shut down until we were done.  We all view thing differently, but I personally view rage as a physical manifestation of anger, like violence, hitting, or breaking things.  I know it's more common than anyone realizes, because we don't talk about it.  I should look up the definition of rage, maybe I'll have a better perspective of what she meant.  Obviously, I have some pretty intense feelings regarding the how, and why I acquired this injury. and some of the experiences I've had as a result.  Anoxia is not typically an event, people survive.  The cell damage is random, so it doesn't appear on scans.  Initially, I may as well have been dead, the machines ran my body for me.  Ironically, the defribilator shocked my heart back into rhythm, but all else was lost, and I will always have a myriad of scars to remind me of my vitality, as well as 7 years of a rehab. program.  No one signs up to have their life altered forever, by losing once trusted, and dependable, actions, physical, and/or mental.  Initially, I had severe memory difficulties, the first couple months I couldn't remember from one day to the next.  Everyday, I woke up confused, and afraid because I didn't remember where I was, or what had pappened.  The kicker was that my tracheotomy kept me from being able to speak, until it was removed, and I couldn't see, so I was unable to react to anything visual.  One of my first, (and favorite memories,is of my mom remarking on my feelings, and folding my fingers, until only the middle one was extended.  It worked, she got me to laugh.  Nothing like a little juvenile humor to appeal to an otherwise unresponsive human.  It's been a long road, and likely always will be.  The key is who you have around you, and to help you keep moving along, towards whatever your chosen path.

 One of the most difficult aspects of this injury, is being alone in it.  There's no yardstick by which to measure myself with others, there's no one who understands how to deal with it, however, there are tons of people who are encouraging,  and others who just want to tell me their opinion of how I can move forward. (Most annoying personality type out there), but my favorite are the people who put the extra time, and put energy into hearing me, and are okay with my will to do things for myself.   Yes, there's a lot of things that  are awful in life, for me, for you, for I everybody.  But it it's not about who got me where, or how somebody else made me feel.  At the end of the day, this life is what I have, and I'm grateful for it, despite all of the absolute rubbish I've endured as a result.  I don't actually feel enraged, not now anyway.  It's been 7 years, I've had plenty of time to realize some peace, and I will always be grateful that I still have the opportunities to rebuild, and rewire.  The ability to acquire new skills, and knowledge is gift to each of us, and not having lost that, I'm contended enough.  With all other injuries, if you lose motor function because of a severed nerve,  tendon, anything, the impairment can be lifelong.  The only beauty of a brain injury is that neurons, and synapses can regenerate.  It's difficult, and pure hell some/most days, because the act of trusting myself, and my abilities is lost.  However, there will always be magic in my, well, 2nd firsts.  And, the continued growth from there.  For example, as my vision has ever so slowly pieced back in, or running again, albeit with a baby jogger, and certainly horseback riding again.  There will always be more to push through, work on, and overcome, whomever you are.  This world is only lonely, if I put that label on it, so I'm not going to.  There will always be positives, and negatives in life.  It's all in how we decide approach our challenges. Mine is a totally unique brain injury, where I have to continue to push on, test everything, and stand up for myself, and the unique injury I acquired.  As they say, 'You don't know what you can do, until you try.'


 

Thursday, May 8, 2014

The road less traveled

I lost an intangible amout when I acquired my brain injury.  At this point I feel like an imposter in the brain injury world, simply because I am the exception.  My heart stopped, and somehow that translates to 'severe cerebral anoxia'.  Basically synapses (connections), and neurrons cells) died from the lack of oxygen.  The damage is not quantifiable, as it doesn't appear on scans.  My records indicate a lack of oxygen for over 10 minutes.  I love that it has taken me, oh, seven years of unimaginable triumph, and conversely devastation to get to where I am today.  Ironically, I don't even know where I'm left standing. All I know is that the physical independence vision, and speech, I've fought so hard to regain, is an blessing, however many bumps in the road.

  Lately, I've been going through old memories trying to piece together who I was, and what lessons got me there.  I did my fair share of  stupid stuff, that I was constantly bailing myself out of.  Though, because I learned what not to do, and could reflect on other choices, I learned to get  to get to where I wanted.

7 years ago my heart stopped dead.  I was a healthy, fit, active young woman with boundless energy.  I had lititle free time, and where I found it, I was outside.  This is me, obviously, not everyone appreciates  this lifestyle, but for me, this is how I go.  Were all different.  In 2011-12, I had my plan laid out for my recovery, and for going back to work/reclaiming financial independence.  Yep, the moment I was released from the hospital, I've been surviving on public funds.  The regiments, practices, and design of the system is archaic.  The people who oversee these programs have either worked their way through the programs, and gotten educated, or not, and there are others who are just so used to being treated like a mildly tolerable fool, that they turn around, and do ithe same tonwhomever comes to see them, or apply for assistance.   I think the world of a lot of people who've helped me on this path.  Others I wish the undue injustice of an anoxic brain injury on, but that's just me.

In my junior and senior years at UVM, I worked 3 different jobs, and attended classes, taught a wilderness instructor course, edited a 'safe at college' hand out with the Red Cross, was on the student council, led alternative spring break trips, outing club trips, and helped with fundraising.  I made all my classes, despite  overcommitting myself.  I wish I'd had a more structured system for over committing myself.  My friends never understood how I did it all.  The ONLY reason I fit it all in, was because of my job.  I had to sit for 8 hours, and intermittently enter data, order things, and do busy work.  Although, I soon found a way to manage the work in bundles.  The doctors rounded at certain times.  I'd have a pile of orders to fo input, and fill, and then, nothing to do.  I learned to be prepared, and always have my school work on hand.  I did all of my reading, and worksheets for school, at work.  I could never write papers because writing has always required my undivided attention.  That is why I adored that job, because I could easily multitask, and get my school work done, as well as my actual work duties done.  My other jobs were child are, and horse care.  I fed these kids breakfast, walked their dog, brought them to school, and went to the barn, to help with turnout, and stall cleaning.  Not glamorous, but the routine, and the horses saved me from getting too self involved.  I have always needed to be occupied at all times.  Actually, I think most of us need that, it's just so easy these days, to stare blankly at a screen, we've lost a lot of the once normal face to face interaction.  Sad, but true.

The life I lead now is the exact opposite.  I live in my head.  I lost all of the hard-won lessons I'd spent 23 years accruing, with regard to physical, and social skills.  My book skills, that stuck, but I walk, and fall like I did at the age of 4.  It's too bad I'm so tall, because falling at 5'8", hurts a lot more than it did when I was 3 feet tall.  Additionally, as we age our bones get harder, and we get heavier, so it hurts a lot more to fall.  I fall around once per week, presently.  I fell today, on my run, actually.  But no one saw:). It was like a very fast, uncoordinated, and awkward stop, drop, and roll.  No harm done, this time!  The way I 'run' now is so absurd, the word run, barely seems barely applicable.  I'm either pushing a 30lb old school baby(less) jogger, or out jautntily running at a pace walkers eclipse.  Right now, the fact that I can do it at all,, is all I can enable myself to care about.  It's funny to be out, and have random people tell me what a great job I'm doing, or how amazing I am.  Of course the kind encouraging words are a blessing, but my first thought is always,'oh please, I'm barely moving, and I must look like lsome dying animal, the way my legs move, how can you be serious?'  Somehow, I can bite my tongue to say thank you, and wish them a good day,, even though my mind is like, 'AHH devil!' 

I've seen so much, dealt with everyone, and everything that has been in the way, yet, now I feel as if I've been left in the lurch.  My degree is irrelevant, and I'm no longer eligible for federal aid, because my debt was forgiven.  Unless I'm able to assume $90,000 in debt, plus interest, on top of new education costs, I can't manage the cost of school.  Guess I should get into tech companies, or oil.  This countries revenue infrastructure is miserable.  It enables the people with the most money to keep all of it, and creates a system of indentured servitude for individuals without  the necessary means to live.  I fell in this hole, now, I have to climb out.  Easier said than done, apparently.  This is probably the most difficult situation, I've personally found myself in. There must be other people who have gotten above it, without setting their pride, beliefs' and values aside.   Clearly dying, in 2007 was pretty crappy, but the incredible support system I've amassed along the way, has carried me through.  There's incredible beauty in the worst of tragedies, that interpersonal support is crucial.  It is the reason I haveve made it this far, and one of many reasons why I keep fighting for the life I want back.  It's truely bizarre to feel so aimless, and not be able to realize a new path.  I have no idea what is next, but I'm determined to stop wallowing in my personal pit of despair.  Just because I can't find my way out now, doesn't mean I won't.  That is key.





Tuesday, May 6, 2014

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...