Kara Swanson's Brain Injury Blog

January 26, 2011


Filed under: Uncategorized — karaswanson @ 1:27 pm

If we knew each other’s secrets, what comfort we would find.” — John Churton Collins.

My mom was one of fifteen kids.  Huge extended family.  Aunts and uncles and cousins everywhere. 

My friends and I oftened joked that my family was the CIA because we never really divulged anything, not even to each other.  A bunch of stoic Swedes, everything was assumed or shared in hushed, secret codes that, as a child, scared the bejesus out of me.

Growing up, I was confused and basically terrified.  Women died of “female problems.”  Female problems?????  Like what, exactly?  Women died from too much laundry to do?  From pinching panty hose?  From make-up or high heels or what EXACTLY should I be looking out for here?

And then there were the people who suffered the terrifying fate of, “The sugar got her.” 

The sugar GOT her????!!!!!  I’m ten, thirteen, sixteen years old, looking at the bowl of white stuff on the kitchen table.  Eyes as big as saucers.  How exactly did the fu*king sugar GET her???

Nobody died of anything because nobody really had anything.  People simply were no longer with us or they had passed on.   They had gone back home and surely they were in a better place.  Some had even gone to be with Jesus and I often wondered if that was on the farm where all my pets had gone to live.

I never knew anyone actually died of medical conditions.  I always thought the laundry did her in or the condiments got him.

And growing up, people never suffered depression, had epileptic seizures  or passed out from alcohol abuse.    They had spells and they were tired.  Spells?  They had spells??!!!

Kids never had ADD or any of the other conditions they are diagnosed with today.  They were busy, precocious, “a little hyper, that one….”  When kids were described as “having troubles at home,” I assumed they would soon succumb to the sugar, the laundry or the panty hose. 

Seems that, from a young age, we learn that it is better to present a positive front.  We go from wanting to be just like everyone else in middle and high school (so we lie and hide) to wanting to beat out everyone else in our twenties and maybe even thirties (so we continue to lie and hide).  No one wants to admit they don’t measure up, they are weird, they are different, they are struggling, they are addicted or inflicted or conflicted.   No one wants anyone to know that their family is all messed up or that, even though they are now a lawyer or a doctor or they married one, that they still can’t afford all the props they’ve maxed out their credit cards with to keep up the facade.

I can picture each person I consider nearest and dearest to me and I can recall when we finally confided, finally shared, finally stopped faking and finally took off our masks.   With each, it was the moment when we forged a bond unshakeable to this day.  

We finally told the truth and we were relieved.  We were comforted to know that we didn’t have to be perfect any longer.  We could be the bumbling, stumbling, mumbling knuckleheads we all are anyway.

I was completely taken aback in 1992 when my mom suffered her first major stroke.  I was naive and ill-prepared.  I had no perspective, no savvy, no nothing.  And, consequently, I have regrets.

I made a conscious decision then to never be so ill-prepared, so misinformed, so caught off-guard.

Since then I have sought everything.  Shared everything.  Investigated everything.  I have asked questions about every condition I hear people are diagnosed with.  I have told people probably more than they care to know about every condition and diagnosis I’ve experienced or “my people” have experienced.  I am a medical investigative reporter.   Heck, by the time my dad had had his second stroke, the doctor would ask me what I thought he should give him….

I truly believe that we are all in this together.  That the issues of class and race and all the other walls we construct are made of paper.    White people and black people and Midwesterners and Southerners and Arabs and Jews and Mexicans and Australians and poor people and rich people and fat people and thin people all get brain injuries and cancer and MS and ALS.   Their children die from accidental overdoses and driving mistakes and Internet suicide pacts and choking games and lymphoma.   Their parents get Alzheimer’s and Dementia and heart failure and liver failure.

At the end of the day, it doesn’t matter what color you are or how big a house you own when you are walking into a room to pick out  a casket for your mother.   And it doesn’t matter how much schooling you had or what kind of car you drive when you are sleeping in the hospital on a cot next to your 8 year old.  The tears of the Jewish daughter saying goodbye to her father for the last time don’t look any different than the tears of the Arab daughter. 

I know people who won’t share their brain injuries because, perhaps, they are embarrassed or ashamed of them.  They hide the symptoms.  They make up excuses.  They want so much to present a polished front. 

And it is exhausting.

One of my nieces is a beautiful young woman.  Talented ball player.  And she got elbowed in the head and suffered concussion symptoms.  I talked with her mother and with her and I was so happy to have the experience I do.  To be able to share what I know.  To offer what I have.  To give them what I’ve learned.

Please share your stories.  Please share your secrets.  Be honest.  Inform.  Be willing.  Everyone has or will suffer some type of condition in their own lives or in their families that will knock them sideways.   You can’t know how comforting it is to hear, “Yes, this is normal.” 

When we ask questions, offer what we know and what we’ve witnessed, actually share the experience with those we love and those we cross paths with….then we provide comfort and we arm each other with one more bit of savvy and information and color that might help all of us as we turn that next corner.

Masks are for Halloween.  Taking them off helps to take the scary out of life.

January 24, 2011

How Are We Doing So Far?

Filed under: Uncategorized — karaswanson @ 6:07 pm

We’re three weeks into January.  How many of us are back to bad eating, back to cheating, back to gambling, back to abusing, back to envying, back to back-biting, back to no exercising, back to smoking, back to drinking, back to complaining, back to couching, back to grouching…

January is a great jumping off point for me, personally.  There is New Year’s Day at the beginning of the month, there is my birthday smack-dab in the middle of the month, and my brain injury anniversary at the very end.  I couldn’t ask for more screaming cornerstones on which to build a new me each year.

The trouble is, sometimes we’re so damned good at the old lives, they’re just easier to keep tolerating than fighting for the new ones.  I look around and I see I am not alone in my struggle to change. 

People who have no problems with their eyes continue to be blind.  People who have no problems with their vocal chords, continue to remain silent.  People who have no problems with their ears continue to hear nothing.  People blessed so richly continue to imagine themselves poor.  People blessed with warmth, so surprisingly cold. 

And people who are given life, gifted life, continue to take it and kill it.

I’m surprised God hasn’t just sent the locusts already and be done with it…

When I read through the brain injury letters I receive, seems the common thread has to do with everyday problems which return the focus on the brain injury that survivors wish to leave behind.

They so so want to not be held hostage by brain injury and yet their everyday is consumed by its ravages.  They resolve in the New Year to “not be injured,” and yet they can’t help but to focus on challenges which throw their efforts into the soup every day. 

One of the ways I have continued to recover from my own injury (it’ll be fifteen years on January 31st!) is to remind myself that, if I want to live in the “normal world” and not entirely in the brain injury one, then I must not live entirely in the brain injury one. 

I had two  New Year’s resolutions and  I’ve already broken them but neither one of them had to do with brain injury.   I may have already stumbled at them but they are “normal world” resolutions.   I am living in the “normal world”. 

And so maybe I ate cake at my niece’s birthday that first weekend.  And OK, I probably had some cake at my brother’s birthday the second weekend.  And alright already, I did eat a little on my birthday too….

But resolving to eat better and exercise more is a “normal life” resolution that helps me, as a brain injury survivor, resist the temptation to return to my brain injury life, a life that gave me all kinds of rationalizations and excuses for gaining weight and not moving. 

Maybe it’s not so much about fighting to stop living an old life but, instead, just choosing to start living one that’s better.  One that looks more like the one you have been dreaming to reach.  Instead of wrestling with trying to fix my balance in my brain injury life, I instead start walking every day to be healthier and slimmer in my new “normal” life.  Does that make any sense?

I hate being cold.  I live in a basement and, when the windchill is minus 20, there’s no way around it.  It’s flippin’, frickin’ cold down here.  But, because I am uncomfortable, I do something about it.   Because I am uncomfortable, I go get another fleece blanket and toss it in the dryer to warm it up.  Or I go put on another sweatshirt.  The point being that, we don’t do anything when we are all warm and cozy and comfortable.  We don’t change anything then.

Maybe that’s why we stay in relationships, marriages and jobs that we hate for so long.  Maybe it’s why we allow him or her to berate us, take advantage of us, cheat on us and ignore us.  It may not be great but it’s not freezing.  We can still get by with a sweater.

Maybe we all need to be cold.  To feel the frigid smack of our realities right there on the kisser.  To be so cold that we have to get up and do something to change what we no longer want, can’t stand and have tolerated for too long.  To ask ourselves, if not now and if not last year and if not the ten before that, then when?

Is this really a new year?  Or is it the thirteenth month of last year still?  Or the 25th month of 2010? 

Are the lives we want actually out there to reach or are they simply air-brushed mirages that taunt and tickle?

Why don’t we all resolve that, a year from now, we will not resolve to change the same things we wanted to change this year and probably every year for the last ten.   Why don’t we all promise to make new pledges next year because we either conquered these or made peace with them or changed our direction and let them go.

Anything is better than continuing to fail.   Anything is better than continuing to be shamed by the unchanged.   The feeling of impotence.   Powerlessness.

It’s time to throw open the windows in January.  Yep.  In the dead of winter.  Throw them open and get cold.  Cold enough where the sweater no longer is enough.   Cold enough where we have to get up and change something.  Anything. 

Let’s live this year as if.  Live it as if we already are the people we have so long aimed to be.  Let’s live it as if we don’t get to make the same resolutions next year.  Let’s live it as if there might not be a next year.

Let’s ROCK THIS YEAR!  This year!

Good luck, everyone.   Let me know how you do!  🙂

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