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.



  1. Kara, how do you do it? I just finished writing in my journal about how I lied to my doctor today when he asked if one of my new symptoms was new or not. “No, not new. It’s been going on a while. I think I just notice it more.” I had such an elaborate scheme going to produce this lie and ensure he wouldn’t think I was crazy or faking. His response was “Well, I would think there was something wrong if you didn’t have that symptom.” And we were on our merry way. I was too embarrassed to admit to him I had lied, and we ended the appointment with me having a hysterical laughing fit over absolutely nothing…once again. Well, first time he’s seen that. Hint, hint: part of the new symptom.

    Thank you for writing and reminding us to consider stopping the lies. That’s my goal, considering it. One day I will stop, but for now I have to think realistically and make my goal the consideration of a great idea. After all, I’ve had a stomach ache for months now and am still in the consideration phase of buying fizzy water and ginger ale for that one.

    You make the warmest, coziest seat on the bus for the rest of us.


    Comment by Cheryl — January 26, 2011 @ 11:16 pm | Reply

    • Why do we lie, after all? I’m guessing because we fear rejection and humiliation. That our symptoms make us lesser people in the eyes of those we consider showing ourselves to. My guess is that, with brain injury, most of our loved ones have already seen our symptoms and they are just waiting for us to admit them and acknowledge them and don’t know how to address that. I just say, “Brain injury” when I do something or say something that is messed up by my injury. I say it with no shame or apology, just a fact. The fact is you have an injury which causes symptoms and those symptoms do not make you less loveable or respectable. They are symptoms of a lousy injury and I’ve found that, as soon as I was willing to name them, I was also able to put some distance between myself and them and not keep them in embarrassment and shame. Maybe that would work for you, too?

      Comment by karaswanson — January 27, 2011 @ 12:44 am | Reply

  2. I loved reading this Kara…

    For me I think I had to figure things out for myself a bit before I could ever admit what was going on… even now I prefer to have some idea of what, where, when how why before I share. I still find sometimes I hold things back (from those closest to me) because I don’t know how to handle any potential fallout if I put them out there…but that is more to do with things that rise up on those odd dark days when realisation dawns and takes my breath away.

    I no longer try to hide the effects of my injury from people. I found pretending was just way too exhausting and used up valuable brain bucks that I could ill afford to squander. I am still trying to strike the balance between secrecy and too much information.

    At one point my only contact outside of my immediate family (husband and mother who were as bewildered as I was at what was occurring) was with medical staff and rehab teams. This expanded to other TBI survivors….gradually I have expanded on this further to include a few other people…but it is with other survivors that I gain the most and purest understanding. Together, round a table we can share the secrets, test them out, roll the words around in our mouths and see how they taste before we share them with others. We may not all share the same experiences and feelings but we ‘know things’ and can appreciate other people’s secrets.

    The relationships I had before the injury are all changed. Some are no more and others are, by necessity, different. Those that survived and flourished did so because we found a way to share the fear and confusion and take a step towards understanding. It’s not perfect by any means but we keep trying to make it better…one tiny step at a time.

    Comment by Christa — January 27, 2011 @ 9:04 am | Reply

    • Christa, brain injury or not, you sound very healthy to me. Very sane. Very bright. Very aware. Don’t ever let that old brain injury steal your confidence. You have the goods!

      Comment by karaswanson — January 27, 2011 @ 12:17 pm | Reply

      • Thanks Kara. I am lucky enough to have a husband who tells me I am bright and smart every single day…even on the days when I am a bit of a mess.

        Comment by Christa — January 27, 2011 @ 6:03 pm

    • Oh my goodness Christa so true Thanks for sharing!!!!!

      Comment by Darcy Bowlin — February 4, 2011 @ 11:24 am | Reply

  3. Beautifully said Kara, and I love your sense of humor. Somehow this brain injury has made it ok for me to be public about my imperfections. What a relief and a gift that is. I agree, it’s so freeing to just be human.

    Comment by Nathalie — January 29, 2011 @ 4:42 am | Reply

  4. KAREN,
    Oh my crap, I am so glad, you have posted your blog up. I was brain injured 7 years ago and the reality is continuosly hitting me in the daunting reality of where and how I fit in this world and the feeling lately is AAAAAAAAAAAAHHHHHHHHHHHHHHH that woud be NOT.
    I know its, me and its another hard day…but its hard not to issolate or to get up and to get dressed so I can look and feel pretty…cuz all there is for sometimes is to walk my dog with a footdrop???? Thank you tahnkyou I dont feel as alone. write back to me @ http://www.mybrainfreeze.com
    Glad to know we can chat from time to time that applies to anyoneelse as well….
    Thanks for listening and being there on this journey of crazy

    Comment by Darcy Bowlin — February 4, 2011 @ 11:18 am | Reply

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