Kara Swanson's Brain Injury Blog

March 20, 2009

Maybe The Miracle…

I was in an airport one day and a man came up to me and asked me why I used a cane.  I told him about the balance problems I have since my injury.  He says to me, sure as sure can be, “The reason you aren’t cured and you didn’t get a miracle is because you don’t have enough faith in God.”

Now, this was a total stranger and our conversation, up to that point, had consisted of about three fairly brief sentences.  But he was sure.  Confident. I said to him, “Sir, you don’t know anything about me or my relationship with God.  Perhaps it never occurred to you that my standing here, given the circumstances of my car crash, is exactly the miracle God intended?”

Wherever I go to speak and whenever I come across survivors and their family members and friends online, I’m often asked if I will pray for their loved one who has been traumatically brain injured.  At one particular event, a woman came up and pulled me aside and told me how important it was that I meet her son who was severely injured, almost dead, in  a vehicular crash.  As I was walking to meet the kid, she told me how they pray daily for him to be healed and asked me several times if I’d pray for him to be healed.  She described how awful and serious the car crash was and how her son had been through this and been through that.

I met the kid.  Nice, handsome young man.  I spoke with him for several minutes.  He didn’t have any obvious problems speaking or processing.   He wasn’t using a chair or a cane or crutches.   I asked him what his biggest challenges are and he said his only real problem was that, when he was tired at the end of the day, his arm hung a little at his side.   But he joked that he played soccer so it didn’t really matter because you can’t use your arms anyway.  His mother confirmed the hanging arm and said, “Yes, we are praying for a miracle that his arm returns and doesn’t hang at the end of the day.  Kara, please pray for him too.” 

I looked at her and quietly said, “I think your miracle has already come,” and I walked away.  Incredulous. 

Natasha Richardson, by all accounts, barely bumped her head and was talking and joking after it.  And now she’s dead.   They call it the “Talk and Die”.   Brain bleed, coma, no brain stem activity, death.

That’s it.  Here’s a young woman with a loving husband and teenagers, in the prime of her life.  Close-knit family.  Talented, well thought of, attractive, personable.  Gone.

If you’re a TBI survivor and you’re reading this right now, maybe your miracle has already come.  So many of us spend so much time hating this and cursing it and praying for miracles to cure symptoms which, in the big picture, shouldn’t be measured when qualifying successful recovery.  When you have come inches from death and when others are dying every day after seemingly innocent and less severe incidents, do you really need to have that slight hanging arm at the end of a long day healed and cured by God????

Natasha Richardson is one of the latest who doesn’t get to curse this injury and hate this injury.  That is left for her grieving family, friends and fans.

Maybe the miracle has already come.  Maybe instead of waiting and hoping and praying for residual symptoms to disappear and spending time cursing their stay, perhaps it’s time to acknowledge and be grateful for the miracle that is this.  Right here.

I never believed  that God needed to provide me any more of a gift than I already enjoy.  When someone gives you a rainbow, you don’t go looking to see if they brought roses too.  I could have been so easily dead that day…Seems ridiculous, and worse, to ask for  more.

Maybe we need to take a look at what it is we’re praying for.  Instead of asking that my legs would start working right or that my speech wouldn’t get messed up when I’m tired, I ask that I don’t ever waste the opportunity to hug like I mean it, to forgive, to be kind, to show love, to do the right thing.

Instead of asking that I remember better or deal with crowds better, I ask that I don’t waste another day failing to appreciate the people, pets, abilities and opportunities I am so blessed to enjoy.

More than most, we survivors of TBI and other death-defying events and conditions and diseases, must remind ourselves every day that we are, in fact, the lucky ones.  Make no mistake about it.   We still get to choose every morning what kind of day ours is going to be when so many are gone by nightfall.

There’s nothing to be bitter and angry about when you realize that the miracle has already come.

March 19, 2009

Sticks And Stones

I was interested in a writing job today and checked out the website of the company advertising for it.  On the home page of the site, they had a statement that read, and I’m paraphrasing here, that “we will NOT use words like disabled and handicapped.”  That stuck with me.  It bothered me and I had to sit with it and noodle it a bit.

I looked up the words, just to be sure: 

Handicapped:  Limited by an impediment of some kind.
1 the condition of being disabled; inability to pursue an occupation because of a physical or mental impairment; also a program providing financial support to one affected by disability
2 lack of legal qualification to do something
disqualification, restriction, or disadvantage
Now, to be honest, I prefer the term “differently-abled” but I had to admit those definitions are accurate for myself and for millions.  It is a disadvantage sometimes when I am restricted or limited by the residual symptoms of my TBI.  It’s not like it’s some big hairy thing.  I just do certain things differently in order to get around my challenges. 
But what I realized is that the words and their definitions are not the problem.  The perceptions we’ve hung on the words are. 
I use the terms disabled and handicapped freely.  I use them without shame or apology.  They are accurate, given the actual definitions.
What I hope is that people will see this disabled, handicapped person as the successful, capable, independent, smart, talented, skinny person I am.  Well, OK, not so skinny just yet…
I remember I was speaking at a conference and a woman stood up during the Q and A and pretty much blasted me for using the term “victim” in my book.   The victim of a traumatic brain injury.   I didn’t even recall the term was in the book at that time and I apologized because it didn’t sound like me.  I don’t use the term either.  It wasn’t until later that I realized it wasn’t even me who put the term in there.  An editor at the time had.
But the woman was indignant and quite proud of herself to “put me in my place” because the perception of “victim” is weak and unattractive. 
It bothered me and I looked up the word when I got home.  I was surprised to find that the term is derived from the Latin word meaning “to sacrifice.”   Simply to sacrifice.  And yet, we have turned it into such a horrible meaning.  A changed meaning from the intended one. 
I’ve been called a lot worse than handicapped and disabled, I’m sure.  So I’m not going to shy away from terms that accurately describe facets of me.  Disabled doesn’t mean anything bad, less valuable, less intelligent, less capable, less lovable, less anything.  It means I’m limited by an impediment of some kind and that’s true.  There’s nothing weak, shameful, or embarrassing about it.  Or me.
So I didn’t pursue the writing job.  Didn’t feel right to me.  I’ve got four jobs already and I probably need to be working more on the “skinny” adjective anyway.  
Hopefully those of us who are disabled and handicapped are working every day to change the perception of the word by living lives that show how incredibly far we can go and how remarkably high we can soar and how ridiculously successful we can become,  given that we’re limited by an impediment of some kind. 
Rock this life!!

March 17, 2009

Realistic Expectations of Life

I was thinking tonight about life in all its ironic, incredulous, ridiculous, humorous, head-turning, jaw-dropping glory.

Side effects of certain asthma medicines can render sudden respiratory death.  Side effects of certain heart medications can increase the risk of stroke.  Medicines meant to treat Parkinson’s have reportedly caused gambling addiction.  Women drink alcohol because it benefits their hearts, only to find it raises their risk of getting cancer.

A soldier survives two tours of duty in the war and comes home, only to die in a drive-by in front of his house the next day.  A marathon runner gets bone cancer in his femur.  A kid gets pregnant or HIV the first time s/he has sex.  A gifted surgeon acquires crippling arthritis.  A couple saves every penny all their lives for retirement and then they die in a plane crash on their first vacation in twenty years.  Or their only child dies and they are left raising their three grandchildren in their 60’s or 70’s.

We decide that life is short and that we deserve to drink Dom Perignon just about the time we realize we don’t really need to drink the really expensive stuff, after all.  Or we decide that life is short and we deserve to drink Dom Perignon just about the time the Stock Market crashes and we are scraping nickels together for a quart of Bud.

We’ve seen enough kids die to know that life can feel unfair.  Nonsensical.  Inexplicable.  We’ve seen enough of our friends and family members get cancer, MS, and Alzheimer’s to realize that nothing’s promised.  Non-smokers get lung cancer and slim, fit people have heart attacks.  Athletes get paralyzed.  Smart people get dementia and kind, generous people get their houses robbed.  The only thing for certain is that nothing in life is.

Surely, surely we must know by now that the blueprints we make for our lives are, more often than not, laughed at by life.  Taunting and giggling.  Go ahead, make your plans!  Choose your path.  Write down the goals.  I’ll bump you off that path before the ink is dry…

If nothing else, the myriad examples of life’s ability to toss us and flip us and scatter our plans to the wind invites us to grab the good when it comes.  To work on becoming more flexible, more adaptable, more willing to change. 

Seemingly gone are the days you married young, stayed in the same house all your life and retired from one job to a gold watch, a buffet dinner and a nice pension. 

So much around us now invites, asks, dares and demands that we accept more possibilities.  And not just accept them.  Welcome and invite them. 

If a hundred bad things can happen to us every day, every year, every lifetime, then our challenge must be  to ensure that we create a thousand more that can happen every day, every year, every lifetime that balance us out, add light to the dark, add day to the night, add love to the hate, add wellness to the diagnosis, add humor to the heartbreak, add faith to the doubt, add peace of mind to the worry, add music to the silence…

No good thing is a bad thing.  No small kindness is small.  No good friend, no warm hug, no fit of laughter, new love, family dinner, call from an old friend, great movie, night of romance, exciting ballgame, giggle of a child, or tail-wagging welcome of a fur kid….None of it is too small and insignifant to rush by.  Rushing to what?  Where in the hell more important are we rushing to?

Nothing good can be disregarded, overlooked, passed by, skipped over or unmeasured.

We don’t know what tomorrow will bring. If it’s a glorious sunrise, let’s keep it and feel it and tuck it in our hearts, allowing it to warm every bit of us.  And if the day after it’s life that comes up over the horizon, we’ll have the memory of that sweet sunrise to keep us warm and give us hope for whatever lies ahead.

March 10, 2009

Only The Injury Is Invisible

Although many TBI symptoms are invisible. those who sport them are not.  It’s OK to ask.

When I do a book signing, people of all measures of differing ability come through the line and I get to spend a little time with them.  Never enough but it is a joy I relish at every event I attend.

I will never forget this one young woman many years ago now.  She was in a wheelchair and she suffered significant coordination and muscle dysfunction.  Her mouth would not close after each word.  Imagine that.  You say a word and your mouth slags open.   You have to push it closed with your fingers after each word.  What a pain in the &%# that would be! 

Bless her heart, she carried a towel to catch what sometimes escaped and her speaking was all but unintelligible.  But I could immediately tell her mind was sharp and her thoughts and words were there.  They were just getting lost in the delivery.  It bothered me so much that I couldn’t understand what she was saying.  We were both frustrated.

I spent time with her off and on that whole day.  Alone, away, where I could focus and learn what her language sounded like.   By the end of the day, I had caught on enough to really appreciate how bright she was and how keen her sense of humor.

I don’t use a wheelchair often but I’ve used one enough to feel, not only the sideways stares but, worse, the fear and almost panic from people seemingly at a loss for how to deal with their awkwardness.

I don’t know about you but I ask everyone in a wheelchair what landed them there.  I ask why they have a patch on their eye or why their arm falls lifelessly to their side.  

I’m sure some people reading that are aghast.  Ha.  But I’ve yet to meet one person unwilling to tell me.  Even eager to tell me their story.  Relief.  Perhaps appreciation.   Maybe just two old goats sharing war stories about canes and chairs.  Who knows.  But it’s an instant connection.  The genuine curiosity to know what makes people uniquely them.

I am disabled.  Officially and certifiably.  You can see the paperwork or the wheelchair on my license plate or the “special instructions” that accompany my driver’s license.  I can pull out my disability statements.  Good God, I’m one of them!  Laughing here.

The messages that go from my brain to my legs and feet don’t get there correctly.  In my right foot, I’ve lost 94% of the safety sense that enables you to pull your hand away when you touch a hot stove so I have to drive with my left foot.  When I fall into deep sleep, my brain inexplicably kicks me right back out again.  When I get tired, I can’t say all the words I want to clearly or even find the ones I want to say.  I can’t tolerate crowds or too much stimuli for too long because it drains my cognitive abilities and slows down my ability to process, anticipate, prioritize, remember and multi-task.

And you know what else?  I love baby bunnies and chocolate ice cream and seeing the polar bears and the tigers at the zoo.   I love sleeping during a rain storm and watching a snow storm when I don’t have to get up and go out the next morning.  I hate political ads on TV for six months straight before an election.  I love an icy cold beer on a warm summer evening and a hot dog in a steamed bun in foil at a baseball game.  I hate when someone speeds up and rides on my tail instead of passing me on the highway.  I love slow dancing to, “Unchained Melody” and watching University of Michigan  football on cloudy crisp afternoons in November.  I get sentimental when I hear our National Anthem and I can’t stand it when I hear that somebody has hurt an elderly person or an animal.  I wish that Mexican food and pizza were diet foods and it’s hard for me to eat salads and fruit in the winter.  I’m scared of spiders and heights and deep water.  I’m not sure what I think about cremation and reincarnation.  I had a crush on Shaun Cassidy when I was a kid.  I miss my parents who are both deceased and I wish I could tell them I love them one more time and hear them sing me, “Happy Birthday”.  I love the smell of freshly cut grass in the spring and I shamelessly sing, “Dancing Queen” at the top of my lungs when it comes on the radio.  I don’t understand, for the life of me,  why young men wear their pants hanging down off their bums.  I don’t think they’ll ever beat McDonald’s french fries and I hope that we can find some reasonable ways to get our soldiers home and turn our economy around. 

We’re not that different.  We’re just people.  Often your people.  The ones you knew, the ones you loved, the ones you raised, even.  We have parts on us that are broken now and things that are missing, that’s all.   But we still have often huge, generous hearts and sharp, fabulous minds, reasonable opinions and feelings that get hurt.  We love and laugh and regret and dream and giggle and struggle and fail and succeed.  All of it.

Only the injury is invisible. 

I love it when I see little kids, like my nephew who’s four and my niece who’s two.  They don’t judge.  They don’t fear.  They run up and grab my cane!  Some twirl it like a baton.  Others use it as a sword or a hockey stick.  They love it and it delights me.  No one has taught them yet that they should feel awkward around us or that we should be avoided if at all possible.   They restore my hope.

It’s OK to ask.  Just as you’d ask a person how they broke their arm or why they have a cast on their leg.   It’s OK.  We welcome the conversation.  Only the injury is invisible.  We’re standing right here in the light, waiting.

March 3, 2009

Surviving Financial Ruin

You wouldn’t think brain injury or a blog about it would have that much in common with the current state of economic woe in this country and all over the globe.   It does.

It is not uncommon for those of us who have suffered traumatic brain injury to also suffer financial ruin as a result of it.  Brain injuries are not only catastrophic in their ability to render wide-scope damage, they are largely invisible, leading disbelieving insurance companies and employers to refuse disability and workman’s comp benefits.  Bills keep coming and money abruptly stops coming.  It doesn’t take long to find yourself in a pretty big hole.  Too often the survivors of tbi cannot return to the level of ability and income they based home, car and furniture purchases on and are faced with surviving on an income totalling, sometimes, a tenth of what they were used to.

I’ve learned a lot in the 13 years since my injury and subsequent financial downfall.  I was thinking that, perhaps, I could help those of you struggling in this wicked economy since it doesn’t appear its going to rebound anytime soon.

My first rule is, never kill yourself over money.   There’s no sense to it.  Silly, really.  Especially in today’s economy, there’s no shame in losing your house, having your car repossessed, or having bad credit.  It’s commonplace and everyone gets it.  There’s no longer a stigma attached to what we once considered eyebrow-raising happenstance.  Stay and fight.  Usually it’s mostly ego and pride that lead people to kill themselves over fortune turned misfortune.   Today you recover from bankruptcy in two years and nobody blinks at foreclosure.  Please don’t teach your kids that money is ever important enough to kill yourself over.

Next rule…If you are crafty enough to turn five dollar bills into hundred dollar bills and pass them off by buying a small-ticket item and keeping the huge amount of change (teenager is doing that right now in Michigan)…If you are savvy and slick enough to slide your sorry ass into people’s homes dressed as employees of the water company in order to steal their money….If you are smart enough to conjure up financial schemes that dupe millions out of millions…

Then cure cancer!  I always shake my head when I hear of people who are brilliant mastermind criminals who create mind-blowing computer viruses and intricate banking scams and complex insurance fraud.

People!!!!  If you’re THAT  smart, why don’t you focus your obvious talent on something that will win you and award you more recognition, admiration and money than you could imagine.  Stop with the bush league antics and aim higher.  We need all the thinkers and creators on our side if we’re going to improve our economy and our health and our lives and our country.   Step into the light.  Healthy brains are too important.   We can’t afford to waste even one of them.

Big rule here.  This one is unwavering.   When things get tough and people get desperate, they do desperate things.   We’ve all read recently how people are starting to act in desperate, ridiculous ways in order to get money.

But the rule is, you don’t hurt old people, kids or animals.   No ifs, ands or buts.   Nope.  You don’t break into an elderly woman’s house and scare the bejesus out of her while you ransack her drawers for her Social Security check.   You don’t host illegal and cruel dog fighting matches in your basement for extra cash.   And you don’t (this one’s gaining in popularity) pimp out your teenage daughter during sex parties in your home in order to come up with next month’s mortgage.

During the Great Depression, they said former CEOs of wealthy corporations were standing on street corners selling apples.  It might get a lot worse than what we have now and people are already acting like knuckleheads.

My advice to those who are starting to feel the pinch of this new and battered economy is to take some time.  Stop panicking.  Take a deep breath.  Many are waiting for some big tsunami to wash away everything when, in reality, it’s all about the trickles.

Little things.  If you’re still using all brand-name products, start there.   Read labels.  Start buying items that are Made In America.  Start shopping at stores whose owners live in your home town/state.  Save money first on items that don’t depend on taste like bleach, detergent, dryer sheets, and garbage bags.  Then try new food products.  One report on the local news swapped out comparable food items and saved sixty dollars in one grocery trip.  Sixty!

Start a conversation with friends and family members about how you might all consolidate rides and products and dwellings.  Panic starts when you don’t have a plan and you have no options.  Start with the worst option.  For most it would be losing their home.  Figure out who you might live with and have that conversation.  If you know you will always have a roof over your head, you’re going to be fine.

Start to barter.   Share your skills and abilities.  I’ll give your kid math tutoring if you fix my roof.   I’ll fill your cavity if you fix my brakes.  I’ll teach you the piano if you clean my carpeting.   You get the idea.

I lost a home.  I lost my credit.  I lost more than forty thousand dollars a year.  I moved in with my brother and my dad and I live in the basement I grew up in.  Any new clothes are gifts.  Any extra money is a mistake in my adding.

And I’ve survived this for thirteen years.  The truth of the matter is that you don’t have to be rich to lead a rich life.  You don’t have to own a fortune to feel fortunate.    This is a new day. 

There’s no more, “keeping up with the Joneses” when the Joneses have a note on their door and their house is empty.   When all the wealthy people were tossed into the ocean from the sinking Titanic, I guarantee you no one was comparing dress labels.

People survived the Great Depression.  They survived the Dust Bowl and the Dirty Thirties.  We made it through the 70s and tough times in the 80s when more was wrong than our huge hair styles.

It’s going to be OK.  So what if you end up sharing an old 1997 Chevy instead of your 2 new coupes with the thousand dollars in payments?  So what if you have to move in with friends or family for five years until you can recover?  At the end of long lives, nobody’s going to be counting your credit rating.

Nobody cares.  And if they do, hopefully they will be the first of your losses.  

P.S.  Don’t give up chocolate.   Never give up chocolate.  That’s just inviting madness.

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