Kara Swanson's Brain Injury Blog

January 26, 2009

A different look is often 20/20

Filed under: Traumatic Brain Injury — karaswanson @ 7:32 am

My brother is an eye doctor.  In all his years, he has successfully corrected the vision of thousands of patients.  Some with reading glasses, some with bifocals, some with medicated drops or complex surgery.  

I’m so often amazed at how many times I’ve corrected my own vision simply by looking at something differently.

I know well a mother whose teenage son is a high-functioning autistic.  Great kid.  Very bright.  Very personable. 

Because so many of his challenges are ones I recognize in my own from TBI  (intolerance for quick-changed plans, chaos, noise), I have felt a keen interest in his journey.  I’ve long assumed it must be very difficult for his mother because of one particular challenge that her son faces.

Like many people who live with autistic symptoms, he doesn’t naturally learn appropriate social behavior.  It doesn’t come to him like it did and does to many of us.  He doesn’t easily apply or connect that which is inferred or which isn’t entirely, exhaustively covered by laid-out rules he can depend upon. 

Because of this, his mom has long known that she must be very specific in teaching him what Society expects and considers within the lines of acceptable, lawful, and attractive behavior.  She doesn’t assume he will know or pick up on a hundred different “rules” she teaches him over and over again. 

She makes lists and provides him “cheat sheets” of positive steps, guidelines and options that will help him navigate through life’s situations.   No detail is too small or overlooked because they know his success and safety depend upon their meticulous attention.  While parents of “normal” children tell their kids, “Don’t be mean!”, she’s telling her son, “Do not make fun of someone because they look, sound or dress differently from you.  Do not say something to someone that will make them feel hurt or embarrassed, like you think they are dumb or ugly.  Do not join in when someone is being bullied, mocked or ridiculed…….”

I’ve long imagined that awful and difficult for her.  Just the sheer number of possibilities to cover.  I’ve imagined this something to suffer.  And now I believe that, perhaps, I was wrong.

Because recently I read of several eye-popping stories that skewed my view of parents with “normal” children.  The supposed “lucky ones”.  The fortunate.  The blessed, if you will.

One young man was angry at his girlfriend so he took a bat to her bunny and bludgeoned it to death.  Another was angry at his parents for taking away his video game so he shot them both in the head.   Still another shot a teen in the face because the kid wouldn’t give up his shoes and his sunglasses.  You hear stories like these so many times that, incredibly, we barely are surprised anymore.

Perhaps no parents can assume anything.  Autistic or not.

My parents told me to be nice.  They never sat me down and told me specifically that I shouldn’t beat the hell out of a rabbit if I got angry.  They didn’t tell me that, if I got angry at them, I wasn’t allowed to shoot them both in the head.   I doubt many parents get this specific.  I am not a parent but I probably wouldn’t either. 

But it sure makes you wonder…How specific must our teachings be?

I dare to wonder how many rapes, assaults, cases of child sexual abuse, physical spousal abuse, animal cruelty and acts of hatred and intolerance could have been avoided if parents didn’t simply assume that there was “no way my child would ever do something like that.”

I’m not accusing all  parents.  I’d probably be one who assumed the same thing.   No one thinks they have to specifically spell out to their kid that, no, you cannot, under any circumstances, shoot a person in the face after trying to steal their shoes.

What can we afford to assume?

Maybe my friend, who has spent her son’s lifetime telling him, item by item, will avert a heart-wrenching disaster she cannot even fathom.   Perhaps her long years of tedious attention to detail will afford her a peace that the parents of these recent news-makers will, sadly,  never know again.

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January 14, 2009

Both My Birthdays

Tomorrow I’ll turn 44.  In a couple of weeks, I’ll turn 13.

I received my renewed license today and I checked it out.  I  was surprised they didn’t put my weight on there, especially given that I had, incredibly, lost 25 pounds the day I filled out the paperwork. 

I asked around and  found that none of my female friends’ licenses have their weight listed on them.  I’m guessing that’s  because a woman couldn’t stand to lose six pounds and have that six pounds of evil still shouting from her license.  Even for a day.  It would bog down the system with every woman getting a new license every time she lost three pounds or seven pounds.

While I appreciate each and every one of my forty-four years, I am especially fond of the last thirteen.   On January 31st it will have been 13 years since I sustained my injury.

I don’t mark it like I once did but I mark it.  It is a searing, singing, soaring reminder of how many years I almost didn’t have.   How many moments of love and laughter.  How many sunsets I might have missed.  How many meals, coffees and beers I almost didn’t get to meet friends over.  How many great songs, great shows, great stories, great games…

There are people I’ve met, family I’ve adored, places I’ve visited, moments I’ve shared, things I’ve learned…A niece and a nephew I would never have known.

How precious is life.

These last days I’ve been bothered again and again with the report of the gazillionaire who threw himself in front of a train after losing his fortune in the Madoff scandal.   It’s not so much that he threw himself in front of a train, although that’s awful enough.  It’s not even that the article said he’s NOT EVEN THE FIRST to throw himself in front of a train after recent financial devastation.  Positively horrific.

It was that the article said he did it because “he had lost everything” AND that he leaves behind a wife and four children.

That’s the kicker, right there.

For a man I’m going to assume was good with numbers, I have no idea how he tallied that he had lost everything when he had a wife and four kids waiting at home.  How did he add everything and come up with nothing?

I asked myself just what I live for and what makes life worthwhile every day.  I counted until tears came to my eyes at the amount of blessings I enjoy.   When I lost virtually everything after my injury, the list didn’t get shorter.  It got longer.

Now, I’m not saying money isn’t important.  Unfortunately, it is.  We have to have some and we have to make some.  Most of us have had to struggle over it at some point and a good many have fought with significant others over it.   It’s one of the greatest stresses anyone has (especially in this economy) and, too often, it doesn’t seem like there’s enough of it left at the end of the month.

I don’t wish that man standing on the deck of that train station would have had more money on that fateful day.  I wish he would have had time.  I wish he would have gifted himself more time.

I’ve known people who killed themselves, or tried to.  I try to imagine where they would have been now two, three, four years past the circumstances that led them to take their lives.   Makes me sad.  Though time doesn’t heal all wounds, it heals most.    Five, ten, fifteen years from now when one of his kids is walking down the aisle or having a baby of their own, he likely would  have been so grateful he stayed…

I wonder how he learned, or who taught him, that losing your life should be part of losing your way of life.  That man didn’t become poor when he lost his fortune.  He became poor when he failed to realize how rich he continued to be.

January 7, 2009

Amazed We’re Still Amazed

One of the challenges most TBI survivors commonly face is the nagging, taunting question of, “Why Me?”  The seemingly unfair “targeting” of bad fortune renders many of us paralyzed with anger and bitterness.   Why me?  Why me?  Why the *&%$ ME????

At some point, maybe each of us needs to ask, “Why not me?”

If we consider that 1,228,600 people get cancer every year, 1.4 million will suffer traumatic brain injury, 1.1 million will have a heart attack, 20 million worldwide will have a stroke, then we have to admit our chances of running into a life-altering event are pretty good.

And that’s not even counting the 2.5 million who have MS or the more than 2 million with Alzheimer’s.  That’s not factoring in deaths by car accident, drowning, homicide and the hundred and one other perfectly awful things that can happen to any and all of us.

I’m amazed we’re still amazed that this seems so unfair.  I mean, thank God it’s not Stage Four, can’t-do-anything-more-for-you cancer!  It’s not hard to find worse off when you decide it’s important to look.

The point is, there aren’t too many who make it to a hundred smoking cigars, having sex, drinking martinis and doing the Salsa.   People suffer.  There are losses. 

 Living with life is the price of living a life.  

I’ve been thinking so much recently  about how fortunate I am to be living here in Michigan.   Even when the snow keeps coming and the jobs keep going and my Lions keep losing…

I’m not naked (everyone else is thankful for that too), starving in some African desert (although I could stand to suffer a little bit of starving), hiding from raping rebels.  I’m not crouching in a bomb shelter five times a day in Gaza.   I’m not warming myself on some steam grate in the middle of a winter’s night in Detroit. 

I’m not amazed I got singled out by misfortune and bad luck and curses and whatever else we spit as nails.  I’m amazed I got to live!  I’m amazed at how fortunate and blessed and lucky and gifted I truly am.  Every single day I’m here.   And, even with my memory problems, I know I’ll never forget that.

January 5, 2009

A Slice of Compassion

I was in line today behind an older woman who was having trouble getting her lottery tickets, change and car keys in and out of her purse.   Not the kind of trouble that would make you think she was in danger or a danger.  Nothing alarming.  Her hair wasn’t screaming purple or anything.  Just an older woman slowing down and struggling a bit with the fumbling demands of every day.

I was behind her in the parking lot when she pulled out left and I heard the sound of a loud horn, honking over and over.   Probably a good half-dozen times.  It was a truck that was glaring and blaring at her, having decided she pulled out too slowly in front of him.   She didn’t cause him to swerve or even to slow down.  I felt he over-reacted and it pulled hard at my heart to imagine how shaken she must have been.   I’ve thought of her several times tonight.   I wish I could have told her I didn’t think she made any mistake. 

Of all the gifts my brain injury has given, perhaps it is compassion that I cherish the most.  I know too achingly well how it feels to try and count change with a line behind you late in the day when your mind just won’t count correctly…I’ve felt the hot impatience of people racing by me when I can’t move as quickly as their schedules demand.  I’ve had mothers admonish their children, telling them, “You don’t stare at cripples!”  I’ve been called disabled on a good day and  “retard” on days I’d rather forget.

It’s scary and embarrassing and panicky for people  to feel they are no longer sharp enough, smart enough or fast enough for everyone’s liking.  When they realize physical abilities that betray them and memories that fail them…

You feel vulnerable and it courses through you like panic and fear and dread and grief.  

My brothers and I took care of our  parents for fifteen years, through six strokes, before their deaths.  I used to pray for help in keeping them safe, first off.  But also for help in preserving their dignity.  In keeping them from getting scared.  Oh, how I didn’t want them to feel scared…

One day everyone who lives long enough will know what it’s like to no longer be hailed the young and strong and healthy and able.   I was so fortunate to learn at 31.   To imagine that the person in front of me driving a little slower might be someone elderly or a person who just found out their son died or who has lost a job or a house or a beloved family dog.   How I wish people would imagine that before they go blaring the horn and flipping them off as they race by.  Slamming their fist on the steering wheel or mocking them…

If I could, I’d serve up compassion like pie.  Whatever I know of it.  Make it, bake it, lavish it, share it, pass out it’s recipe.  Because, as soon as you know what it’s like to feel shoved aside and rushed by…As soon as someone rolls their eyes at you or taps their foot or emits a heavy sigh because you’re too slow for their liking…

Then you’ve been given the gift of compassion.  To embrace it and welcome it and gift it to yourself.  To demonstrate it at every turn to those whose feelings and struggles you recognize in your own.   And to lavish it, share it and pass it around as pie.

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