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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May 6, 2009

Mother’s Day Is Always Christmas

It was always around this time.  Some years maybe a little earlier; some years, perhaps, a little later.  But around now our Mom would pop out of her bedroom smiling and hand one of us a K Mart bag, proclaiming that she had found that Christmas present she had lost in December.  Fond memory. Smiling here.

In July she’ll have been gone for eleven years and that date always hurts.  No way around that.  But it is always around this time when I think of her so much.

I long imagined  it was because of Mother’s Day week and how much I miss her being gone.  Often I feel so lonely on Mother’s Day when mine is gone and I have no children.  Today, when I was tearing up about her being gone,  something made me realize how much she is still here.

It’s Springtime in Michigan.  Today was one of the most glorious days.  Those flat-out, God it’s great to be alive! days.  Wonderful sunshine.  66 degrees.  Soft breeze boasting of backyard grills fired up and freshly-cut lawns.  And the flowers…

My Mom’s backyard is positively dancing!  Soft sweet petals swirling and twirling in the sunshine!  Without any help from me (I have absolutely no talent in gardening), her apple and cherry blossom trees are singing with color, decorated with robins and cardinals and blue jays.  Her yellow tulips have returned again, just as they have every year since she planted them almost fifty years ago.  Her favorite lilac bush, now stretched taller than the house, literally glows in the dark.  And for a few beautiful mornings this time each year, its lovely fragrance invites neighbors to open kitchen windows, basking.

We’ve all gotten our mothers flowers for Mother’s Day.  Today I realized that my Mom sends them to us every year at this time, reminding us of how much life and love remains after death.  How much beauty and joy come to gently touch our shoulders after heartbreak and loss.  A parent’s love is so strong that not even Death itself can break it.

I never had children that didn’t have fur.  As I’ve gotten older and welcomed my friends’ kids and my brother and sister-in-law’s son and daughter, I have realized and witnessed the kind of absolute love, devotion and sacrifice that maybe I didn’t have the perspective to appreciate enough in my own Mom when I was younger.   And still she sends me flowers…

That’s a Mom.  You can vomit in their hair, carve in the new kitchen table, break a window with a fastball, get caught drinking at the high school dance, cut Valentines out of the lace curtains and a thousand other transgressions and still they are willing to gift you their entire lives.   And even after they’re gone.

We take so much from our mothers.  The best of their recipes, advice, sayings and traditions.  And even in what we bump up against, we take from them what not to take from them.  There is no other relationship like it.

It’s awfully hard when they go…

I wept for my Mom today.  Went right into the ugly cry sitting there in the Kroger’s parking lot.  This weekend I’ll bring her a bunch of her favorite lilacs, clean her headstone and lay them just below her name.  Where I’ve imagined her heart is.  And then I’ll come home and look at that backyard, like a beautiful bowl of delicious fruit, all gloriously colored and intoxicating, and I’ll remind myself that here is where her heart is.  Here.  In all the best that I am.  In all the beauty she has left for me.   And gifts me still.

And I’ll pray that all of you who are mothers and fathers will know how deep and lasting your imprint.  Even when those kids of yours might line your face, empty your pockets, steal your sleep and gray your hair…

Just as you breathed life into them, you will live in them long after you go.  They’ll see your expressions in the mirror.  Feel your voice in their hearts.  Hear your advice when they give it to their own kids.  Cherish and pass down your traditions.

All that you offer them, hope for and give them…won’t be lost.  Won’t be for naught.  They’ll learn, one sweet day, that parents make Christmas in May.   That parents make Christmas every day. 

Happy Mother’s Day.

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