Kara Swanson's Brain Injury Blog

July 24, 2009

Writers, All Of Us

Over the years people have asked me what it’s like to be a writer.  They tell me they “could never do that” when I believe that we are all writers.  All storytellers.

We rewrite our personal histories to quiet regrets, to prove any number of favorable traits, to impress bosses and employees, new lovers, family and friends.  We decorate the oft-harsh realities of our pasts to color our present.  To entertain.  To comfort.  And, especially, when our present isn’t what we had hoped it would be, our gussied-up pasts remind us that yes, we have been something special in this lifetime. 

I often noodle this question, when is enough enough?  What job or career is the one that cannot be recovered from if you lose it?  Which is the one we cannot move on from?  The one that nothing can follow?

If you are a professional baseball player, is that it?  Your family, your hometown, your friends…They’re all so proud of you.  Surely that must be the one career you can’t recover from losing.  But even if you are the best on your team or the best in the league, is that enough?  Is it enough when there have been thousands who have become professional baseball players before you?  And, even if you are the best baseball player that has ever laced up spikes and taken the field, what does that mean?

What about becoming a doctor or a lawyer, going to Yale or Harvard?  Is that enough?  How about if you become a millionaire?  Surely that must be enough then.

But there are 8.7 million millionaires in this world.

People in my community struggle so much with the life they lost.  The careers left behind.  What they cannot do any longer.  Often, as it becomes more apparent that we will not return to those abilities, we paint them and retell them and romanticize them until nothing we are and nothing in our present or our foggy futures could possibly be as good as before we were hurt.

I’m sure that, if I live long enough, I will be the best caterer that ever choreographed a seven course dinner.  Just you wait.  Laughing here.

So I’m wondering exactly what particular job or position is enough.  That one title, that one achievement…that so stands alone that we cannot recover its loss?

Michael Jackson was one of the greatest and wealthiest entertainers in the history of entertainment. Was that enough?  Rumor has it he was obsessed with recovering his record-breaking status of the early 80’s and couldn’t accept that he had lost so much of his perceived relevance.  That he never overcame it.

Why is it that so many of us feel that all there is is what was back there?  That all that matters is we can’t get back that career and status we enjoyed before our lives changed? 

People do it in all areas of life.  How many times after a rocky relationship and breakup does that former partner become idolized and thrust upon a pedestal and emerges this glorified one that got away

We storytellers and re-writers of our histories conveniently forget that it wasn’t all perfect then.  Not our jobs and, often, not our relationships.  We didn’t bring home paychecks of gold (unless we were hedgefund managers) and, if we got divorced, obviously the actual relationship we shared (not the edited version) with our spouse was not all smoothe chocolate kisses, diamond sunsets, sultry tangos and soaring rainbows.

How long does ideal have to last?  How long is good enough, good enough?  Why, when so much can go wrong, are we so surprised when it does?

Could it have been enough for Michael Jackson simply to enjoy that he once did it better than anyone else on the planet? 

For 13 years I was a catering manager and a darned good one.  I enjoy rehashing the “glory days” with former colleagues and friends.   They are cherished memories.

But I am good with the fact that I did it once and I did it well.  I don’t have to do it again.  I don’t have to go back.  I don’t suffer one moment when I believe that that was all that defined me.  All that I was meant to do in my entire lifetime.  All that I could succeed in.  Or that my catering success was supposed to take me from A to Z instead of from C to F. 

Is any job?  Would it be different if I had been a critically acclaimed opera singer or a professional tennis player or a Congresswoman?

Our lifetimes are stories we write.  Our injuries demand, this economy demands, life itself demands that we  are able to close chapters and start new ones.  The only one thing we are throughout our lives, after all, is alive.

A dear friend of mine was a therapist and a social worker before she acquired breast cancer.  Now she’s a photographer, an art gallery owner, a breast cancer advocate and a painter.

I was a catering manager before my injury and now I’m a high school sports announcer, a dog sitter, an author, a blogger and a public speaker.

No book is one chapter. 

No life is, either.

I was walking tonight and listening to one of my favorite songs, “I’m Movin’ On” by Rascal Flatts.  I love the lyrics:

I’m movin’ on
At last I can see life has been patiently waiting for me
And I know there’s no guarantees, but I’m not alone
There comes a time in everyone’s life
When all you can see are the years passing by
And I have made up my mind that those days are gone                

Nobody has to be one thing all their lives.  There isn’t one job that is the be-all and end-all in this world.  Happiness is found in constants and commitments that aren’t dressed up as titles.  Success and reward can be found in a thousand different places.

How do you explain the man who works as a sewer parts distributor making 23-5 a year and is happy as a clam?  Completely delighted with his life.  Or the woman who absolutely loves her life while scrubbing morgue floors on the midnight shift in nowheresville?

What is supposed to be the goal?  Surely recent headlines must prove that nothing secures the perfect life.  No amount of career touchdowns.  Not money.  Not titles.  Not millions of adoring fans.  Not corner offices or lifetime batting averages of over .300 or an armful of Oscars.

My goal and, too, my challenge to those like me…is to believe that we can write a fabulous next chapter.  That every old chapter can end and every new chapter can begin and that we are the ones who fill it.  We write it.  We choose what goes into it.

Everyone is a writer.  And, make no mistake about it, the book will end one day.  But the book doesn’t have to end after the third chapter because of injury or difficult childhoods or terrible parents or lost jobs or lousy marriages.  The rest of it doesn’t have to be blank pages. We have more power than that.

As authors of our books, of our lives, we write in the successes.  As much as we want and in whatever area we choose it.  We aren’t chained to anything.  It’s OUR book!  We put in the love.  We insert the laughter.  Wherever we want it!  We create the characters who triumph over adversity.  We choose the supporting characters who can turn the story this way or that.  We start and end the chapters when we want to and on what note. 

Nobody else writes our story and thank God for that.  There’s not just one way to write our story.  There’s not just one way to be happy.  No one job to feel successful.  No one path to find that equals right.

The greatest stories of all time all contain drama, sadness, heartbreak and struggle.  It’s what makes them worth reading. 

 It’s our great fabulous wonderful exciting opportunity to turn the page.  The screen is blank.  The cursor blinking.  I can’t wait to see what you come up with…

July 9, 2009

Till Death Us Do Part

This is admitedly a hard one to write.  One I’ve put off because the issue is so painful to so many.  It has so many edges and pointy elbows.  So many prickers.  I’ve seen it torture so many people and dismantle so many couples.  It hurts my heart.

What do you do when your spouse or partner, boyfriend or girlfriend, acquires a traumatic brain injury that significantly changes the dynamics of that person’s personality?  Their very essence… 

What happens when the injury takes the person you loved and chose, even married, and replaces him/her with someone you don’t want to be with any longer?  Someone you never would have chosen?  Someone you don’t even recognize beyond a familiar face?

Traumatic brain injury is a mean bugger, make no mistake.  It’s no surprise that the incidence of divorce after TBI is astronomical.  There are very few other conditions which similarly steal so quickly and dramatically the very characteristics which make a person that particular person.  The one you chose.

If you are blessed enough in this life to find someone who is your ideal…Someone with your version of great character, complementary goals, compatible habits and mutual interests, it is hard as hell to have that snapped away in an instant.  Cruel.

What do you do?  The love of your life who was once kind and warm, funny and selfless, helpful and romantic, even-keeled and emotionally balanced, all of a sudden is mean and hurtful, unpredictable and depressed, self-centered and bitter, rageful or even dangerous.

What do you do?

There is pressure to stay.  We take vows of “till death us do part” and “in sickness and in health”  Most of us take them seriously and should.  

There is guilt.  Fear.  The pressure of “what will people think?” if you leave someone who has been disabled and his/her whole life has been turned upside down.  How can you leave?  What does that say about you?

There is pressure from families and friends who, to be honest, want you to keep the brain injured person and not return him/her to their family to have to deal with.  What will become of the person if you leave?  How do you make that right in your mind?

It’s a lot.

I watched my father take care of my mother after massive strokes left her significantly damaged and unable to speak coherently or take care of herself.  I had the utmost respect and admiration for him but I could not have judged him had he decided to admit her to a care facility.  Nobody can judge something so personal and so intimate.

I have heard of far too many couples who have suffered a traumatic brain injury to their marriage.  Some on their honeymoon, of all things.  Some, even, just weeks before their marriage.  Or a month after their first child was born.  What an awful place to be.

It affects everything.  People are suddenly faced with a partner who isn’t what they counted on.  Depended on.  Maybe he or she cannot be trusted with the children, is no longer contributing to the finances of the household and can no longer be an equal partner in decision making.  Or the caregiving relationship becomes more parent/child than equal adult.  Because their personalities have changed and often for the worse, maybe they are no longer pleasant and there is no desire for intimacy.  You don’t even LIKE them any more.  You sure don’t want to have sex…

People have approached me so many times asking what should they do.  How can they stay and how can they leave?  How and when will they know?  When is enough, enough?

I believe that the decision to stay or leave must be one that you can live with either way.  One without regret.  You have to be able to feel you did everything you could to improve your situation and to make your relationship work, even if it is markedly different from the one you enjoyed before the injury.  Different doesn’t always mean worse, after all.

The first issue is always safety.  If you or your children are not safe because the survivor has created an unsafe environment, there is no waiting.  There is no question.  No hemming and no hawing.  If you are threatened either because of something they are doing or incapable of doing and your very life and well-being is in peril, you get out immediately.

If you are not in any physical danger and the situation is simply no longer desireable or bearable,  there is a series of steps I feel is a good guideline for making it or determining it unmakeable. 

You let the healing take place and you let the doctors do their thing.  You exhaust every possible rehabilitation that will afford you a pretty clear picture of what the problems are and what’s likely to remain.  I went through physical, occupational, speech, specialized balance, alternative vocational, driver’s and psychological  therapies before I had a clear understanding of what was unlikely to heal any further and what I needed to do for each particular problem.

It’s important to learn.  You learn about the injury and you learn about the myriad ripple effects of it.  You learn what specific and unique challenges your loved one now faces.  You learn how they feel about what has happened to them and how that affects their behavior and attitude and potential.  You learn about your own feelings and how they are affecting your behavior and attitude and potential.  You share the information with family and friends and keep them involved in the process.

It’s so important to begin to separate the problems that are actual symptoms of the injury from those that are symptoms of the emotional aftermath of it.  For example, is he rageful because that part of the brain was damaged or because he is angry that this awful thing happened?  Is he acting recklessly because his brain can no longer keep him safe or because he’s depressed and simply doesn’t care any more?  Is she sitting on the couch doing nothing all day because of damage to her ability to initiate or is she feeling sorry for herself because she no longer has her former capabilities?

Each problem will dictate each solution.  Medication, relearning, compensatory techniques, adaptive equipment, emotional processing…There is help!  Problems can be resolved!  But it takes time and a lot of effort.  Problems need to be recognized and untangled and set apart and given appropriate treatment.  If the person’s brain has been damaged to the point where they cannot tie their shoes any longer, you don’t yell at them for not caring enough to tie their shoes.  You find out if they can relearn that skill or begin wearing slip-ons or velcro shoes.

One of the biggest steps in the series is getting both of you competent therapy.  The injury has happened to both of you, affects you differently, and you both likely need help in accepting it and adjusting to the screaming change that has been thrust upon you.  A good therapist can help the survivor accept the injury, let go of the life that has been forever altered, regain self esteem, and find a way to welcome this new life and head forward.  A good therapist can also help the “well” partner accept the injury, work through the grief of losing dreams and plans, the mourning of their lost loved one and how they used to be and the resentment that often comes from being partnered with someone who has so dramatically changed the relationship.  I cannot speak highly enough of how helpful a good therapist can be.

A lot CAN improve.  A lot CAN be figured out and fixed.  A lot CAN even be better than it was.  I’ve  heard several people tell me their marriages were “better than they’ve ever been” after injury.  Many times the injured person emerges a better person because of their injury experience and the perspective it gifts.  It may take some time to regain their footing and put the puzzle back together but I can’t count the people I know who are better for it and able to move beyond it.

But the injury does exist and it demands.  The “well” person has to nurture him or herself.  You need help.  You need to preserve and not disappear.  If you choose to stay, you need to enlist the help of your support circle to keep you from getting burned out. 

And, often times, your old support circle suddenly isn’t what it used to be.  You and your spouse used to go camping with other couples or to the casino or to each other’s homes to play cards.  When a couple changes, often times the people around you can’t or won’t accept that.  They want the old roles you played in their lives and they don’t want to change how you interact. 

If brain injury forever changes who you are, then likely it also changes who you are with.  At least in part.  People bond because of shared interest and common experience.  It may help you enormously to get involved with other people in the brain injury community who will understand what you’re going through.

There is no time limit for knowing.  Each survivor faces unique challenges and responds to them differently.  No course of treatment meets all the needs of each family.  Hopefully you will take the steps and afford yourself enough information and time and rest in order to make the decision you feel good about.

If you stay or go, it’s not going to be easy.  There is sadness and grief over a life you had thought was waiting for you.  Nobody wanted this.  Nobody asked for this.  Nobody prepared us for it.

And, although people are commended for staying and sticking and honoring their vows, sometimes determining the need to go is the best decision you can make for a relationship.  If you cannot accept the injury and forgive it…If you find that you cannot release the resentment and you are simply punishing the survivor day to day with your own bitterness and anger, then staying for staying’s sake isn’t helping anyone.  Survivors need to be surrounded with genuine support and positive, accepting people. 

Take your time.  Sleep on it.  Gather all the information.  Let as many professionals, medications, therapists and support people help as you can muster.  Even if you don’t stay, none of the steps will be in vain.  Both of you will be better for all the efforts.

I wish you all the very best in your decision.  I’m sorry you are in the situation you are in and I wish you both new paths of joy.

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