I’m Turning 2

I died two years ago today.  Yup.  Really.  My body didn’t die, but my life as I knew it, my personality, my goals and dreams, my daily ability to function and work all ended on January 25, 2014.  It just took me a long loooong time to realize it.  I kept thinking I’d wake up one day and be a person I recognized again.  As of this two year anniversary, I can state with certainty that that isn’t going to happen.

I love roller derby, loved roller derby.  I skated for five years, with all the usually injuries – sprained knees and ankles (each at a separate time), partially torn supraspinatus, broken thumb, nose that doesn’t seem quite as straight as it use to.  And, really, I didn’t mind the injuries.  It is such a rush to skate and hit and play the obsession that is roller derby.  I loved my life. And then, one morning, I was jamming during a scrimmage against the local men’s league, took a hit, landed on my shoulder and hit the back of my head.  Starting crying (!?!@#?) uncontrollably.  Then started laughing uncontrollably.  And the world didn’t seem quite steady.

I loved being Dykotomous Free

Went to urgent care, waited for three hours or so just to be told I had a concussion.  Go home, avoid screens, don’t take ibuprophen.  You’ll be better in a few weeks.

Right.

Well, turns out not.  Turns out I am one of the 5% or so who get a concussion and the symptoms don’t go away.  Correction – I am still waiting for them to go away.  Most of them have gotten better, avoidable or tolerable.   Fatigue is the worst.  I can’t yet work full time, go out and socialize after work, take on new projects, or travel because of fatigue.  Something more difficult to pin down is loss of executive functioning.  That means a decrease in the ability to make complex decisions, manage one’s life, and generally function as an adult.  Other things that I can usually manage enough to ignore are sensitivity to light and noise, dizziness, poor balance.  There’s other crap, but that’s the highlights.

I look to photos to see if the changes are reflected in my face.

Here’s me in 2012 at the height of my roller derby prowess.

Here’s me last month.

The smile is pretty much the same.  The face shape is the same.  I’ve always worn glasses but never use to take pictures with them on.  The eyes, to me, are the difference.  From something focused and powerful to something soft and a little vacant.  Maybe that’s just my bias, I don’t know.

I have aged. Oh, how I have aged during the last two years of pain and frustration and loneliness and isolation.

I am also softer.  Yes, rounder of course – my muscle mass turned to body fat.  When I say softer, though, I mean emotionally.  Softer towards other people, more empathetic.  Now I know what it is like to not be able to speak clearly, to lose my train of thought at any interruption, to be an invalid.  I know what it is to be weak and incompetent, and that has made me much more accepting of other people’s weaknesses and incompetence.

Everything is less rigid, less black and white.  Changing my interpretation of an event is a regular activity.  My perception changes every day, depending entirely on my fatigue level of the moment and what time of day it is (as it relates to my fatigue level).  It also depends on what I happen to recall at that moment – what set of memories are available for me to base my decisions on.  There is no solid, there is no steady perception in my life.

I smile as I write this because Mary pointed out to me that although I am a lot less rigid than I once was, I am still extremely stable and reliable when compared to the general population.  I go to work every day, pay my bills, go food shopping in a consistent and routine manner.  When I make a commitment, I honor it.  If I can remember what I said, I will follow through.  If you remind me, I will probably follow through then, too.

So, on my one year anniversary, I crunched the numbers.  I did it again for my two year anniversary.  For whatever reason, I feel less compelled to share the concrete losses and inconveniences of my injury versus telling stories or sharing what I’m feeling and experiencing.  Here are some numbers, anyway:

• Total lost wages from injury = $39,155
• Total not set aside for retirement = $16,800
• Total medical appointments while I have been healing = 186
• Loss of 17% of my retirement credit for the year from 2 forced months of unpaid leave.  I’m a little bitter about that.
• Two years of “satisfactory” rating at work, instead of my usual “exceptional”.  All because the big boss says I can’t get an exceptional rating while I’m working part time at my full time job.  Regardless of how damn well I do my job.  Regardless of the fact they agree I am disabled as specified in the American with Disabilities Act.  It doesn’t make any difference on raises or anything like that.  It just is one of a thousand little insults that pop up in the life of one less able.

The amusing thing is I no longer mind being called disabled.  I prefer it in some ways.  It acknowledges the daily challenges I face just trying to live my life with a head injury.  As I have let go of this idea of what I should be able to do, or where I should be at, I have found a level of acceptance about my current life that makes living more graceful, pleasing, less fraught with emotional drama.  And one of the descriptors of me living this life is that I am currently disabled.  Not able.  Not able to live without being reminded over and over again how a head injury limits my dreams and desires.

This captures my experience piecing myself together after a brain injury. Things mostly line up, but there are gap and changes and things aren’t ever going to be the same. Image courtesy of Mary Zompetti.

I am disabled – right now, anyway.  Still possible that I might heal completely… whatever that means.  I’m not even sure anymore what that would look like.  Likely, I won’t have these problems forever.  Or, I won’t have all of these problems forever.  Or, I’ll find ways to cope with these limitations so I won’t notice them forever.  Choose one or more.  Honestly, it doesn’t matter what happens in the long term.  I still have this body, this mind, this life to live.  One day at a time.