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.

Oct13homebout

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.

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

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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.

fragmentedkim

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.

 

 

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25 Responses to I’m Turning 2

  1. Lori formerly Jam Reaper says:

    So sorry. What a powerful image of piecing things back together. Thanks for sharing and shining a light on concussions in the derby community

    Like

  2. TMB says:

    It took me over two years to ride a bike again. I still have some issues with movement and I’m guessing I can never go on a roller coaster again. I have similar med bills. I rushed going back but don’t remember working/home life/etc for months after. I cried so much. I felt fine some times. For a minute. I went to so many doctors! I love roller derby more than anything I have ever done. And I am sorry. This was very near and dear to me. I would play again, if I could and I wish I never did. But I’m glad I did. It’s still painful…

    The Mom Bomb #20, alwway

    Like

    • kwittorff says:

      I’m still steering clear of the bike! I want to ride sometimes, but there aren’t any good areas where I can ride near my home that doesn’t put me near cars… and my balance isn’t quite at that level yet.

      It is heartbreaking to lose derby. Nothing will make that different. Losing parts of yourself to do it – like you say, not remembering chunks of your life – means its not worth it. I figure there are plenty of people out there who want to skate but can’t anymore for other reasons, and they’ve adjusted. I figure I will too, eventually.

      Like

  3. TropiKill Storm Trina says:

    I followed a link posted in Derby Over 40. Thank you for sharing your story. I see that we skaters are starting to take concussions more seriously. I had no idea that they could rock your world so completely so fast.

    Like

  4. Maja says:

    I see the change in your eyes, too. – And i love the fact that you are more empathetic, now, i think this also shows in your pictures. ❤

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    • kwittorff says:

      Thanks for reading and commenting Maja. You’re the first one who’s been willing to acknowledge the change in my eyes – appreciated! Sometimes I look in the mirror and don’t recognize myself because my eyes don’t seem right. Ah well.

      Like

  5. Dreadly weapon says:

    Much love to you dykot/Kim! I’m so sorry you are still healing but thank you for confusing to share your story. Love and light your way!

    Like

  6. Leah formerly SWEET & ASSAULTY says:

    Thank you soooo much for sharing! I am turning 2 this summer myself and could not believe how accurately you described life as I know it. My head injury took place off the derby track- but ended my derby dreams and some others. I am a mirror of your experiences, the fatigue, the aging, the ongoing symptoms, dr upon dr upon dr- even the unfocused eyes.
    I thank you for sharing, sometimes it’s comforting to know that someone out there understands.
    Thoughout this journey I have learned it’s all about perspective, and here is my conclusion….
    I can never go back and be who I once was, but then again maybe I never was who I should be.

    Like

    • kwittorff says:

      Hi Leah. I hadn’t thought of it, but of course similar accidents outside of derby could end one’s derby dreams. I’m sorry that happened. I appreciate your comment, as it makes me feel less alone. Feel free to email me at thefoggyshore@yahoo.com or on fb if you’d like to talk more… I’d love to hear your story.

      Like

  7. Daryne Rockett says:

    I had my second birthday following a derby TBI on January 5th. You have captured so many of the things I would write in my own blog about the experience if I weren’t too tired to write it. Thanks for that. It makes me feel less isolated with this knocked noggin. I’d like to connect with you and compare notes, if you’re up for it. If not, I totally get it. Best wishes as you keep on healing. HarpPoon

    Like

  8. Geni Taylor says:

    Your article has so completely hit home with me. In 2010 I got 2 concussions within the same year. (One derby related, the other not). I didn’t think much of it at first, but then I noticed my short term memory wasn’t quite right, my focus was off, I had trouble holding a pencil…. Luckily, my area has a group that works on cognitive rehabilitation for people with head injuries. After a year of training, I felt like I could at least function on my own. I no longer got lost in the parking lot, I learned to write things down, and to put important things in the same place so I can find them again. I never played roller derby again, but I became a skating official and just got my level 1 certification. I still take medication for tremors but I do feel a lot better. I hope that you too continue to heal, and a love and appreciate your acceptance of your situation. Good luck!

    Like

    • kwittorff says:

      Thanks Geni. Yay you for going back to ref, and getting your certification too! I hope to go that route eventually, once I have tolerance/energy for such an effort. I’m so glad you were able to get quality rehab too. I’d love to hear more of your story, if you want to share – feel free to email me at thefoggyshore@yahoo.com or find me on fb. Blessings.

      Like

  9. NoMad says:

    I have dealt with similar issues since returning from Iraq in 2006 and learned to live at what I now consider my new normal. I too am told I am still smart and driven, but I remember what it was like to never forget a tech spec, a phone number, or really any data after the first time I learned it. Others have trouble understanding why I get upset with myself for not being perfect at something or not remembering a detail but in all of the fog the only clear constant is knowing what I used to be capable of. I am so sorry that Derby was the cause of your lose since it brought you such joy. Thank you for writing and sharing your experiences, truly only you can know what the differences are regardless of how many tell you they understand. Thank you.

    Liked by 1 person

  10. Joi says:

    I thought I had written this. You sound exactly like me. It gets better with time. I am 5 years post concussed. I am starting a support group for folks like us. Would love your input. My name is Joi.

    Like

  11. Dr. Rick says:

    I would highly recommend seeing an OD who can test for inner ear concussion/Labrynth concussion aka vestibulocochlear concussion (google) any time there is a whiplash, you can tear fibers in the inner ear that mimic brain concussion’s. The eye doctor will run a series of tests to see if the vertical and horizontal visual fields line up appropriately and may recommend a yoked prism in a lens that will correct your symptoms.

    Like

  12. Susanne Whiting says:

    thank you Lori for such deep, raw, honest accounting of your situation. It has helped me so much…I was rear ended (actually smashed) by a semi in rush hour traffic 4.5 years ago. Along with my TBI and many orthopedic issues….my optic nerve remains paralyzed…which means I have double/rotating vision all of the time. This is the only obvious lingering issue from the accident. But my mind still is majorly effected and everything you have mentioned rings true for me too. It’s just nice to have someone really get it…I find comfort in the connection….sending you healing vibes and loving energy. Thanks!

    Susanne

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  13. Pingback: Two Year Blogiversary | The Foggy Shore

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