Kara Swanson's Brain Injury Blog

May 19, 2009

Before It Even Happens

When I was injured and it quickly became apparent that there were too few rehab appointments approved by my insurance and too many weeks and months between those approvals, I devised many of my own “home remedies” to stoke my recovery.

I tried everything from massage to Reiki to needles in my head and warm rice on my feet.  I sang and I did word puzzles.  I read books and did exercises.  I imagined and meditated and prayed and painted by numbers and colored and tried every kind of food, herbal tea and homeopathic scent ever even rumored at being helpful in restoring cognitive ability.

What I’ve come to believe since is that, as much as we need to continue the conversation about what to do for the survivors of traumatic brain injury AFTER they are injured, perhaps we need to broaden the dialogue of how to help improve recovery way way way before the injury even occurs.

I’m not talking about prevention.  I’m all for seatbelts and helmets and deciding not to drive after you’ve drunk yourself blotto or while texting your “BFF”, sure.  But I’m thinking before that even.  Way before that.

I’m talking about the innocent acceptance that children display before they are taught to hate, to scoff, to mock, and to heap unflattering, unfair and even dangerous connotations onto different

Whenever I see young people being cruel-hating for hate’s sake. .. Anything and everything that is different from them…I get so irritated at my generation.  These are OUR kids.  I can’t believe that, in this day and age, people my age have taught their kids to hate.  Still.  When I imagine we should know so much better by now, too many have chosen to pass it down and to continue the ugly cycle of people who cannot tolerate those who are simply different from themselves.  Their skin color, their politics, their social status, their physical or cognitive ability, their looks, their beliefs, their God, their definitions of family.

I know I’ve mentioned before how blessed I am to have kids in my life who have been raised to respect and welcome the whole bucket of bolts they know as their aunt.  I am so warmed by the hope and belief that they will live their lives accepting of their own potential struggles and the struggles of people they meet.

So much of successful recovery from traumatic brain injury has to do with the undoing of lifelong lessons that cause significant damage to our recovery efforts.  Somewhere along the way, much of Society failed to make room and acknowledge the very real and growing class of the different. 

When we are facing recovery from TBI, we are imprisoned in a body that no longer takes commands as it once did.  We are no longer the kings and queens of our castles when all of the once-dutiful servants of our commands are now running willy nilly all over the kingdom, maniacally making their own decisions.

That’s hard enough.

But more than that and equally as challenging becomes the need to quiet voices too long championed in feverish pitches.  Choruses of tallies from faceless votes-

You’re different now.  No longer a part of the group.  No longer as good.  No longer as valuable.  No longer as welcome.

And that we can do something about. 

I hear too often now, after injury, so many people unwilling to try new things because they fear they won’t do them well.  They fear they won’t be as good as they used to be at them.  They fear they will fail.  And, often, they just won’t try them because they aren’t the kinds of things they’re used to. 

Where did they learn all these things?

Brain injury demands that we are willing to be different, to accept differing versions of our selves and our lives.  To discover happiness in new places, new passions, new ideas and new jobs.  To again seize the opportunity to fill an empty slate.

I started playing the piano about six months ago and I have not once been accused of being any good at it.  But I’m having a ball!  Now granted, I may not be able to learn in traditional ways and I may not be able to completely memorize all the notes and keys like most.  But I am often reminded at how sad it would be and how poorer my life if I was unwilling to try.  Unwilling to be lousy for the sake of wonderful and rejuvenating and fun. 

If we have not learned to be malleable…If we have not learned that often the reward is in the doing and not just in the doing great…If we have not learned that we must seek happiness within ourselves instead of in the approval of others, then how can we heal?  How can we successfully and happily be different if we’re chided and scorned and ridiculed for it?

For as many of the cognitive symptoms that simply will not retreat no matter how many rounds of therapies and rehab stints are waged,  there is a whole side of recovery that can be installed and implemented right now, before anyone else gets hurt.

We can teach our kids how to welcome different.  In themselves and in those around them.  We can cheer their innocent acceptance of those who are not like them.  We can teach them that there are a lot more places than first.  We can remove the pressures that are heaped onto young people imploring them to be only first.  To be only best.  To be only the keepers of what is cool and trendy and approved by magazine covers and movie stars.

We can teach them to be real.

I struggled with my self esteem after my injury.  Everything that had told me I was successful was lost.  Every definition that I had learned of what it meant to be “valuable” in Society was gone.  The ability to make money, to keep my house, to pay my bills, to drive a car, to buy nice clothes, to behave “normally”…

I was ridiculed for how I walked and how I talked.  I am ridiculed still.   And, while I’m thankful that I am incredibly strong now in my unshakable belief of what it means to be valuable, there are too many in my community, and in like subsets of different, who are struggling to survive the judgements.  And they are found every single day at the end of ropes, at the bottom of bottles and on the bathroom floors of too many homes.

This part we can change.

Traumatic brain injury is never going to end.  Babies will still be shaken by sleep deprived parents who “lose it”.  Kids will still fall off bikes and get tackled by bigger linebackers.  People will still drive too fast and blow through red lights and slip on the ice and suffer clots and bleeds and blows and a hundred different disasters that strip the sense from life.

We have to teach our kids that there is room for them no matter what becomes of them.  If we teach them that they are only acceptable when they are making straight A’s, when they are heading off to law school and medical school, when they are winning and beautiful and smart and successful and making gobs of money, what do we tell them after they are in a wheelchair and unable to speak and incapable of any of the things we told them meant special and valuable and worthy?

Let’s cure a million brain injuries twenty years before they happen.  Let’s hand these kids the tools before anything needs fixing.  Make a warm and safe place for them to land before they fall. 

Different is stared at.  Laughed at.  Whispered behind.  Run from.  Sent away.  Gossiped about.  Passed by.  Pushed aside.  And it’s costing us more lives than we can afford to lose. 

This, thankfully, we CAN cure.

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16 Comments »

  1. What wonderfully inspiring writing, and so very true.

    It will take me a few reads to be able to take it all in, but I will derive enjoyment from that process.

    Am sending the link to my colleagues at the local branch of Headway in the hope that it may inspire them too.

    Thank you.

    Tom

    Comment by honorarynewfie — May 20, 2009 @ 4:01 am | Reply

    • You have just made my day, Tom. Thanks so very much for your kind comments. Smiling here. 🙂

      Comment by karaswanson — May 20, 2009 @ 4:01 am | Reply

      • You’re very welcome.

        This made my day too because it touches on the area that I, myself, am having the greatest trouble with… re-adjusting my own expectations of myself. I think I will be able to understand it more the way you have put it, as a more general theme rather than concentrating on specifics (which is what I have been doing).

        It’s always the way that many, many people can say something to you but it takes just “the right phrasing” to get the message across.

        🙂

        Comment by honorarynewfie — May 20, 2009 @ 4:14 am

  2. Dear Tom:
    Can you give me a specific example of something you are struggling with? If you want, write to me more privately at K24Fork@aol.com

    I try to think of it in baseball terms. You’re a Hall of Fame hitter if you are getting yourself out 6 or 7 times for every plate appearance.

    I think we all tend to think we’ve fallen behind once we are injured. Like we’ve fallen behind the pack. Not fast enough any more, not efficient enough, just plain not good enough…

    I choose to think of it as we are now LEADING the pack. We must remember that everyone will one day follow. Due to illness or age…they will all know one day what great parts of this are like.

    We have a great opportunity to pave the way and let them know how happiness is found and success is had despite anything that is thrown in our path. There’s no one perfect ice cream flavor. Anyone’s and everyone’s favorites are good enough. It’s just like happiness and love and success. It doesn’t have just one version of right. We just have to find the version that works for each one of us and wrap our arms tightly and enjoy the ride. 🙂

    Comment by karaswanson — May 20, 2009 @ 4:33 am | Reply

    • Haha… You’re talking to Brit here ! “getting yourself out 6 or 7 times for every plate appearance” means absolutely zilch to me 😉

      But give me a chance to take all of this in and I’ll get back to you privately later in the week.

      I like that concept of “leading the pack” because I can see the truth in it from experience, but the problem in passing that on to the “unafflicted” is that it is already hard enough trying to convince people that my particular problems are nothing to do with the aging process.

      Anyway, more anon.

      Thanks again. 🙂

      Comment by honorarynewfie — May 20, 2009 @ 5:34 am | Reply

      • Oh, laughing here. Didn’t know you were visiting my blog from over the pond. Nice of you to come all this way. In American baseball, you receive a batting average of how many times you get hits. Someone hitting .300 is a star making gobs of money yet that means he still is unsuccessful 7 of the 10 times he tries. Go figure, eh?

        Comment by karaswanson — May 20, 2009 @ 1:25 pm

  3. Having received this from Tom and I have glanced through the above I am keen to read it more slowly as Secretary of this group I can see how we can perhaps share with more of our members. So will be sharing this with more and hope it will help members see another way to cope.
    Barbara

    Comment by Barbara Linton — May 20, 2009 @ 6:10 am | Reply

    • Hi Barbara: Nice of you and Tom to visit from across the pond. Welcome to my blog. 🙂 I’m so glad you think it might help the people you work with. That absolutely delights me. Please let me know if I can ever be of some help. Best wishes, Kara

      Comment by karaswanson — May 20, 2009 @ 1:27 pm | Reply

  4. Kara,
    Very inspiring words. Do you mind if I post a link to this post on my Web site about fatherhood? Thanks.
    John Hetzler – john.hetzler@gmail.com

    Comment by John Hetzler — May 20, 2009 @ 10:31 pm | Reply

  5. I’d be absolutely delighted, John. Thanks so much. Hey, G sent me a link to a great blog of yours and I was unable to open it. Could you send it to me? I’d love to read it. 🙂

    Comment by karaswanson — May 20, 2009 @ 10:40 pm | Reply

    • Kara,
      Sorry I took so long to reply back. Here’s a link to my Web site: http://oldwahoo.blogspot.com/
      Let me know if you have any problems opening it.
      Thanks.

      Comment by John Hetzler — May 24, 2009 @ 12:40 am | Reply

  6. Very inspiring article, and very true. We as parents need to take every available chance to talk to, and show our children, young and grown, about accepting everyone, no matter what! Hopefully something will sink in eventually, we can’t give up. Parents are the best examples! Thanks Kara!

    Comment by Linda — May 21, 2009 @ 2:37 am | Reply

  7. Thanks for your kind works, Linda. You’re a great example of one who never gives up trying and reminding and teaching. 🙂

    Comment by karaswanson — May 21, 2009 @ 3:07 am | Reply

  8. thank you for your writings
    You are able to put into words so much of what I feel
    I am a new normal but a misfit in this world of rapid production
    And working in health care where even there most doctors don’t
    Understand TBI!!!!!!
    They too want to say that we are all getting older and more tired
    Physicians don’t understand cognitive fatigue
    So if you need a break for cognitive recharge they do not understand
    It is enough after awhile to make you feel like you are going crazy
    The world is moving at warp speed and I am crawling
    Thanks for sharing your experiences

    Comment by nancy jones — August 16, 2009 @ 8:30 am | Reply

    • Yes, yes. Warp speed…You said it! It’s a shame that even the doctors don’t understand your need to cognitively recharge. You’re NOT going crazy. Remind yourself that it’s the exact opposite. You’re keeping yourself FROM going crazy and hats off to you for it. 🙂

      Comment by karaswanson — August 17, 2009 @ 12:55 am | Reply

  9. Nancy, that is so true…
    You know that effect they do in the movies sometimes where they focus on the main character in real time and have everything around them racing along super-fast ? The number of times I feel like that…. especially at work, when all of a sudden everything around me is happening in a blur and nothing makes any sense.
    And it’s not as if I work in a big office… there are only five of us in the whole company !
    Just two people talking to me at the same time can create that effect.
    Makes you want to reach out for that large brake lever on the wall and pull it tight so that everything will just STOP!
    … and so true… physicians definitely don’t understand cognitive fatigue.
    Keep safe.
    Tom

    Comment by honorarynewfie — August 17, 2009 @ 6:23 pm | Reply


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