Follow by Email

Pageviews last month

Friday, January 31, 2014

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!

Tuesday, January 28, 2014

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!

Wednesday, January 15, 2014

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!

Tuesday, January 14, 2014

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.

Monday, January 13, 2014

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.

Tuesday, January 7, 2014

Over the hills, and far away... (What the lawyer said)

Yesterday, I busied myself with packing up my things, and was ready to go, except for breakfast.  I'd been upstairs, sorting, and packing.  I didn't want to get distracted by going down stairs, but I also didn't realize how much time I was taking.  I figured it would take over an hour, but my clothes were in 3 diffent  bags, from laundry, and visits, and gifts, yikes.  It was a bigger task, than I'd assumed.  I hoped to leave with less bags, than I'd arrived with.  No such luck.  My dad arrived, and willingly schlepped everything down to his truck.  The truck is a classic Maine rig.  It's a 1988 Chevy with intermittent heating capabilities.  It's never warmer than 50 degrees, even less on sub zero temp.  I found myself putting on another pair of  wooly scks, partway into the drive.  It was trying,but my feet couldn't stay warm.  It wasn't the usual 45,minute drive to Belfast, it was a grand 3 hour  jaunt to Bangor.  Bangor is relatively foreign territory for me.  I never went up there as a kid, although, I've made several trips since acquiring this injury, it still seems unfamiliar, and strange.  I also think of Sean, now, since he brought me up there once.  My lawyer is based up there.  Last summer, I got a letter informing me the lawyer I'd been working with, had passed away from cancer, and a new lawyer had taken over my case.  If you're curious, we are suing Bayer, the drug company that manufactured Yaz.  I was taking Yaz, when I suffered the cardiac arrest, and it was later determined to have been the cause of my impromptu cardiac arrest.  The fact that I survived, and have regained as many connections in my brain, as I have is un fathomable to me.  6 years later, I'm quite happy to be alive. Feel like my perspective on life is invariably unique, however, still similar to myself,  prior to losing the life. To which I was accustomed.  You know, stuff like independence, mobility, and oh yes, the ability to see.  I see well now, but I had a trying couple of years, where my brain could not process what my eyes said, they saw.  That may seem like an odd analogy, but sight is a sense.  Your eyes tell you what's going on around you.  The synapses that relay the message ny eyes give my brain, disappeared.  I still don't see as well as a normally sighted person, but I'll happily take what I can regain.

I've never been so mentally together, as I am today, I'm still not where I was, but I'm happy I can recognize those differences now.  It's taken my brain a long time to realize the differences, outside of my physical difficulties.  I'm okay, that I will never again be who I was at 23.  Although I'm livid, that I did everything I could to maintain a healthy, safe (relatively) lifestyle.  I was very active, had trained for, and completed my first sprint triathlon, and  had gone on a week long backpacking expedition in the Adirondacks, weeks before my heart stopped.   I was stressed about figuring out my next step, until, an amazing. Opportunity fell in my lap.  My dad had contact with a woman who ran a nonprofit, bearing her name.  I met her, discussed what she was looking for, and accepted the position, or an offer to test the waters.  The major caveat? I'd need to move to Texas.  I even had family there, and wasn't happy about moving to a red state, on my own.  But, I knew that job could be a very helpful stepping stone.  I left September 12th, to get the lay of the land, decide if I'd be the right fit.  Of course stress is a factor not to be discounted, in mcardiac arrest.  Although, if I look at the stress I've endured since my heart stopped, sep. 11th, 2007, I should've suffered at least 3 more cardiac arrests.  Losing Sean was the most difficult experience, I could've imagined, he'd been my lifeline, and my reason to stay afloat.  When he left,  I drowned in my own misery for longer than I'd like to admit.  Just as I'd begun to develop my self assurance, and willingness to push myself, my mom was diagnosed with breast cancer.  I knew I couldn't help, directly, so I tried to push through, by mentally distracting myself with school.  The busier I stayed, the less the idea of losing my mom, was on my mind.  It's hard for most anyone t see a loved family member so very ill, with an uncertain outcome.  Of course, she did make it, and still struggles with lasting symptoms, and ill effects.  I could draw some comparisons, of which there are plenty, but she was able to recover her presiding life, within a year.  Living independently, got her horse back, and her physical mobility back.  Her life is different, but still has her passions.  In that sense, I can't relate, I lost everything, physically, and mentally, and I still haven't reached any kind of self dependence.  Nor do I have the ability to get up, and go do the things I love, right when the inclination strikes.  We all lean on oneanther, to clear the major hurdles, but when the dust settles, you have to rely on yourself to pick up the pieces, and put things back together.  

Seeing a lawyer to discuss the possibility of financial compensation for what happened to me, seems preposterous, in the harsh light of day.  I chose to take a prescription to avoid becoming pregnant.  The drug made me relatively ill each day, but, I didn't get pregnant.  If I could've known I was choosing between poor timing to have a baby, and the strange, ridiculous manner of living I've needed to become accustomed to, I'd much rather be a single mom, over the anomaly, my life is today.

My previous lawyer Sam, passed away from cancer.  He'd been quite impressive, very on top of things, in the know, with regard to my case.  Lobbying the Senate to support lawsuits involving the manufacturers of prescription drugs.  In my case, I need to go after Bayer, who manufactured Yaz. The contraceptive which stopped my heart.  Really, death was not my ideal form of contraceptive.  Sure, it's effective in preventing pregnancy, but let's face it, it prevents everything else too.  Really, not what I had in mind.  Thanks to the quick action of Sean, and imaginably my roommates, I made it to the hospital, and perplexed countless doctors.  I was young, in good shape, mo addictions, there was no clear reason as to why my heart stopped.  Eventually, a possible link was established, between Yaz, and my cardiac arrest.  Labs also indicated that I'd had a lower than normal level of the essential acid, creatinine.  According to my doctor friend, low is normal, and no real cause for alarm.  My lawyer also said a similar thing, when I asked what the indication could be.  I will be livid, if my case in gets dismissed, on such a trivial detail.  Suing, in my opinion, isn't fair restitution, for the damages my life sustained.  Yes, money can be helpful, but it also comes with more regulation, concern, research, etc.  it could make life easier, in some respects, but I would need to learn to manage it appropriately.  Although, given that I am 1 of 23,000, or some ridiculously high number of women, seeking retribution for damages, in a mass claim, I very much doubt I'll see much of anything.  It's absurdly maddening to think about.  Also horrifies me that Yaz, is still on the market, under a different name, Ocella, now.  Money really does rule the world, and apparantely, indidual lives are a minor cost, in the face of a billion/trillion? dollar corporation.not so proud to be American,bright now.

What the Dr. Says...

Today, I had my annual neurology exam, and question and answer time with my original neurologist, since day one.  The first couple years, it was bi annual, then it became annually.  Brain injury rehabilitation is so painfully sloooow.  I remember breaking my finger at age 12,  and being so bummed I couldn't ride my bike, for a whole month.  It was devastating.  Then in college I dislocated my elbow, which was frustrating because of the sling.  The worst was breaking my right hand when I crashed my bicycle in a race.  I'm right handed, and I had a job, where is used a computer, but couldn't use my right hand.  My typing speed decreased ten fold that year, but I still had no idea what I was in for 2 years down the road.

My questions for today were largely focused on my overall progression over the past 6 years.  I've already learned they cannot predict what's in store.  Otherwise I wouldn't be writing my life lessons, as learned from my brain injury.  I'd hoped to see my original brain scans, to get a better idea of which places had seen the greatest damage.  I also, was hoping for a then, and now type scan analysis.  My friend, Anna,who suffered a frontal lobe injury, has images done relativly often.  Apparently my images are inconclusive, meaning they could not  see profound damage, in any one spot.  Just tiny flecks all over.  No wonder they don't push to aid, or save the lives of people who lose Oxygen to their brains.  Their  wonderful imaging machine is unreliable, so it must not be possible for anyone to survive.  It feels very strange to be the only known survivor, of a severe anoxic injury.  There's no one else to relate to. When I'm explaining this to different people I meet, I've asked, "have you heard of Anoxia?"  When two different peole said yes, and started talking about music, I was lthinking, "well, that's a weird diversion, but, I'll head off now."  Eventually, I discovered , 'Anoxia' is the name of grunge looking band, thanks to the google machine.  At least it seems like a more reasonable segway to music, but I now share an unknown medical condition, with a somewhat unpleasant looking band.  Awesome.

So, what is anoxia?  It's a lack,of oxygen, simply.   I suffered an anoxic brain injury, brcausemy heart   stopped, and no Oygen traveled to my brain.  This occurrence apparently is  regarded as the end, for people, as no one has ever been sustained to a place, where they could have the opportunity to create the new connections.  I would love to say that I feel what happened to me, had to have been the most frustrating acquired disability, in that realm.  But, EVERY disability, must be the most frustrating concept to overcome, as you learn to face it.  There's an amazing book called, 'The adversity Advantage' by Erik Weinmeyer, whose unbelievable feat of summiting Mt. Everest, blind, is one of his many climbs to fame.  The book details what it was like, seeing his vision gradually disappear, as an adolescent.  My point being that while my vision is a strange, beautiful anomaly, because it returned, but also that you have take what life hands you, and put it into a positive perspective.  Life gives us lots of hurdles, some bigger than others, but we all need yo make the best of what we have, since the one thing we have not figured out how to replicate, or sustain to no end, is life.

In conclusion, seeing Dr. Gorman for my annual visit, was not as fulfilling as I'd hoped. Always pleasant, but Id wanted a visual scale, by which to measure my improvements.  Bummer for me, it's not possible.  I just have to keep self evaluating my progress, got something new and different...  The only positive thing about the lack of medical knowledge with regard, is that no one can define my limitations.  The brain is the only organ we posess, with the ability to rewrite itself.  Whatever I cannot do today, I can hope to do tomorrow.   As they say, hope springs eternal.

What is this?

With the onset of a new year, I  am looking forward to getting my life back on track.  Adaptive recreation has clearly become a passion, but I'm finding it difficult to forge a bridge back to meaningful employment, and getting away from public funding.  Of course they've been immensely helpful, and have allowed me to sustain myself throughout my rehabilitation process, and for that I'm extremely thankful.  However, being appreciative for the asisstance I've received through this enduring journey, does not mean it has been easy.  As a country, we should not be proud, nor impressed by the sullen, cross, power tripped out people, that are some of the faces of government asisstance.  I've become cross myself, with talking, and intereacting with certain groups, in this regard.  It would be great if I was a better person, but if somebody intentionally tries to put me in a box, or has a complete disregard for the situation, I get upset, and once I get control over that, I've had to  learn to put away my feelings, in this situation, because they're unwanted, and make the situation more difficult.  I suppose much of life can be like that, but the lessons I have to repeat, I always think, 'well, duh, I used to know that, why is this so hard now.'  I guess it's a similar feeling of being a timid kid, left to your own devices, at your parents work.  I was happy doing my own thing, drawing, reading, whatever, until, someone approached me.  Of course they were kind, but I'd be totally intimidated.  I was the little kid that hid behind my mom, when she took me to cocial events.  Eventually, I grew out that, as I learned that people weren't so scary, as they sometimes seemed.  Now, I'm 29, 6 years after losing all those early social lessons, and it's been a very trying go of it, in that perspective, mostly because I don't have family to lean on, here.  I definitely have people I'm close with, but it's helpful to be around the people your brain is wired like.

Social situations are still the hardest, and they may always be.  Though, the more I put myself out there, the more comfortable others become, with regard to being comfortable around someone with unique challenges.  This is something I feel is somewhat common for people of different abilities, of course I know I'm very different from others now, my visual abilities, aren't what they were, I can't impulsively move, and not fall, I have a really hard time recognizing people, and I have to use all of my focus, and concentration to be understood, the first time I try to speak to someone.  There are fun medical terms for many of my difficulties, and while I know what they are, writing them out like that, seems like an unforgiving laundry list, of all the things i still have difficulty with.  However, in a choice between not living, and the hardships I've faced, it's life, and relearning everything, all the way.

I will never be the girl I was, at the onset of my injury, again.  I came to terms with that, a ways back,and, have to focus on moving forward.  Whether my high point of the day is the fact that I got my cookie sheet of the oven, and did not burn myself, or that I ran 13.1 miles, and then went in the ocean.  On order to ditsy afloat, I can no longer pick myself apart over the things I can't do.  Instead, it's about taking a moment to realize how far my brain has brought me, especially, from where it was, 6 years back.