Kara Swanson's Brain Injury Blog

August 28, 2010

“Here. Make Yourself Useful”

Today was my Mom’s birthday.  She would have been 82.  August 27th…

Always on these anniversaries, thoughts float by like leaves on the top of  an ever-moving river.  I am always reminded of how much time continues to pass, even when we cannot account for it. 

Today I heard her voice many times.  When I was a kid, I would come home and she would be there cleaning the windows or something.  She’d toss me a rag and say, “Here.  Make yourself useful.”  Seemed anytime I was just standing there or sitting there, doing nothing, she would put me to good use.  Toss me a rag, hand me a bag of groceries, a pile of corn needing to be shucked.  “Here….”

I was thinking about how many brain injury survivors write to me believing that they are no longer useful.  Caught in neutral.  Stuck.  No longer moving.  Seems we lose what we were able to do and, suddenly, we measure ourselves as having lost our worth, our usefulness, our good measure.

When I was thinking about my Mom’s words today, suddenly it occurred to me: 

I think we’ve been looking at things all wrong.

We’ve been looking at what we can no longer do and judging ourselves now worthless and useless.  I think the secret is, instead, to look around us at the people who cannot do things any longer and then get busy.

I don’t know about you but people in my life are way busy.  Rushing.  Overworked.  Overwhelmed.  Oh, how they are busy.  They have their multiple jobs and multiple kids and multiple obligations…No time, no time, no time…

They sure don’t need me to be a hotel catering manager.  Funny how that works…

One of them works long days and so I do his laundry.  One works long days and so I go check on and feed her cat.   I watch dogs when people go on vacation or take people to eye appointments when they know they’ll be dilated.   I’ll pick up and drop off lunch for someone too busy to leave work or take packages up to the post office for someone who can’t make it there before they close.

Because the people in my life all know I spend way too much time on the Internet, they’ll ask me to look something up for them, to check facts, figure out new meds they’re taking or do a little research on whatever because I have more time.

Because they all know I love to edit and write, they’ll have me check their resumes and business correspondence.  I’ll write speeches for them and admissions letters.  I’ve done proposals and eulogies and whatever people have trouble writing.

And more.

A friend of mine has very sore hands from arthritis so I’ll turn knobs and open jars.  Another gets a sore neck and forearm from work so I’ll massage it.  Another gets terrible sinus headaches so I’ll massage her head and neck as well.  There’s a bugger of a sciatica on one that acts up and a knotted shoulder blade on another.

None of these have anything to do with the catering career I lost to my injury.  But I’ll tell you that, while doing any of them, I feel a lot of things and none of them are useless.  None of them are worthless or unimportant or no longer valid.

I’m helping and it feels fabulous.

When someone needs me to help relieve a horrible headache or back pain or get a letter edited that needs to be in the mail in the morning or a package that needs to get to the post office, they sure don’t care that I can no longer work a twenty hour day choreographing someone’s wedding.

And the best part is-neither do I.

There was one survivor who used to write to me and tell me that he’d spend all his days yelling at God and watching his wife carry on the family chores he used to do.  He’d offer up commentary on how she would drag in the groceries and she’d often bring home lettuce when they already had lettuce.   He said that she was overwhelmed doing so much and would often make mistakes.  He was good at reporting how she failed in the jobs he used to do so well.

I asked him if he ever helped her make the grocery list, helped her do the shopping, maybe surprise her when she returned home to a clean house and a drawn bath.  Did he ever do the laundry for her or rub her shoulders after her long day or make something for dinner or pour her a glass of wine…

Nope.

My Mom was a tough bugger.  I’ll never forget the time she accidentally dumped a huge pot of boiling water on her belly and never even told us.  A few days later I happened to see her reach up to hang sheets on the line and her blouse blew open to reveal monstrous, angry burn blisters literally the size of water balloons.  She never said a word.  Never complained.

So, when someone like that tosses a rag your way and tells you, “Here.  Make yourself useful,”  you get busy.

You didn’t want her asking twice.

Ha.

What I’m thinking that, for all of us so stuck in neutral because of the things we can do no longer, maybe it’s time someone tosses us a rag.  Maybe it’s time we stop looking at ourselves and consuming ourselves with just ourselves.

Time moves us forward.  Propels us so.  New things demand our time, our energies, our commitments.   We can’t carry them all.  If we are going to participate in our lives and in the lives of others, then we have to set those old things down so we can take up the new ones. 

Nobody needs us falling back on the hike.  We need to keep up.  And, in order to keep up, we need to get up.  To “make ourselves useful.” 

Time to grab a rag and get busy.

I honestly don’t think that the people in our lives cast us off and strike us from the list of useful because we can no longer do all that we once did.  We’re the only ones that do that to ourselves.

If we choose to help others, we reclaim our place amongst the doing.   We are helping, we are contributing, we are making things easier on the people we love.   There is nothing useless about that, any way you look at it.

If you do a load of laundry for someone who’s working long hours or you clean up their place so they can come home from their second job to a tidy house, do you think they consider you useless?   If you’re the one who has time to let out their dogs or feed their cat or pick up their drycleaning or run some packages up to the post office for them, do you think they imagine you worthless?

Not for a second.

Helping out and making ourselves vital members of any team doesn’t take any extraordinary set of training or skill.  Only simple desire and some time that so many of us find ourselves with.  All we have to do is look and listen.   It doesn’t take much to please someone who is busy and overloaded in their day.  Do their ironing for them.  Give them a night off from making dinner.  Run up to the store for something they forgot.  Give them a nice long foot massage…

We won’t find participation and investment and keeping up and being a part anywhere we look if we are using only our own inabilities as measure.  But if we focus on the inabilities of those we love instead and try to make things easier on them, however small an act may seem, we will feel anything but useless.  

If my Mom were here, I’ll bet she’d toss you a rag and tell you the same thing.  🙂

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July 13, 2010

Cast It On Out There!

I watched in sadness, like fists of millions, as those blinded, oil-sodden birds struggled to survive the spill in the Gulf.   My initial irritation at the breaking news turned to anger and then to grief as the breadth of the catastrophe unfolded with time.  As the stories of waste and debacle spread like the oil itself, the realization was quieting and breath-taking.  Sickening to the soul. 

I had the news on in the background one day while I was on the Internet.  They were interviewing Gulf  fishermen and, one by one, they lamented their new situation. 

All of a sudden I realized I was finishing their sentences. 

Everything we’ve known is gone now.  It’ll never be the same.  We’ve done this our whole lives.  How will we survive this?  What will we do now when this is all we’ve every done?

I thought, Whoa!  How creepy is that?  I was literally giving their side of the interview, answering the questions exactly as they did.

I thought, heck, I don’t even like crab legs!  I gave up fishing twenty years ago when I couldn’t bear to hurt the worms or the fish any longer.  I won’t even cook fish indoors in the winter and I’ve never understood putting anchovies on a perfectly good pizza.

What the heck is going on here????

And then I realized how very similar their tragedy is to the millions like me who suffer brain injury.  Though most of us didn’t get our injuries because of crude oil or near  fish or on the shores or in the Gulf, we may as well have for all that it changed. 

In an instant it’s all different.  Your day started out like a thousand before it and, by nightfall, nothing about tomorrow will every look the same.  Just like that.

As the months pass by, you watch your own caps fail while your life keeps leaking.  Most of us didn’t have a Plan B, either.  We scramble to pull together solutions while the  remnants of our lives wash on to shore in endless waves of who we were.

You don’t know what you’re going to do when, all of a sudden, the capabilities and tools you enjoyed all your life no longer greet you in the morning like a gull’s returning song soaring over an open, calm sea.

Some people have already killed themselves over this oil spill, as have some brain injury survivors.  Some simply can no longer carry the loss.  They cannot sit with  the fear of the unknown any longer.   Every footprint in that sand is a story.  It’s heart-breaking.

But I felt a warm swell of pride for all my fellow survivors who suffered their tragedy without hundreds of thousands beside them suffering the same.  Without the support of real understanding by everyone around them.  Without thousands of volunteers racing to their aid to walk the remnants of their lives, clearing off the globs.

You Rock, Survivors!  You Rock!

I cheer those tiny bands of families and friends who help us clear the horror off of our wings.  Those wings that used to soar with normality.  Those wings which once sent us racing toward a sky full of dreams and hopes and potential.

Too often we feel so small and lonely as much of our extended family and friends, co-workers and communities return to their lives.  I’m sure, six months later, the people of ravaged Haiti are wondering where the hell all the news crews and singing rock stars went.

But you head on.  Head forward.  You soar again and fall once more.  You make progress.  You suffer setbacks.  But you keep inching farther and farther away from the spill.  Away from a life that can no longer be as it was.  And you find, if you can, the answer to, “What else can I be?”

There are countless shops, boat companies, fishing crews and workers down in the Gulf who will be forced to box up their lives and move to new ones.  Even if they never leave their homes.  They will tell of “the one that got away” just as we do.  The career, that first home, the spouse who couldn’t handle it, the best friend who was too embarrassed, the favorite hobby…

But just as we have learned, they will too.  Like the boy in Haiti who works clearing debris in the bucket line for five dollars a day because there is nothing else he can do right now, they will find new ways to measure grateful.  New ideas of what success and progress mean.  They will find out how strong they can be when they don’t have an easier choice.

I pray for those affected in the Gulf.  I pray that they might meet some of the thousands I’ve had the honor of meeting.   There are countless brain injury survivors that the world will never see on Nightly News.  But many, many are standing ramrod straight.  Even some in wheelchairs.  They capped their own oil spills with all the strength they could muster in order to calm and clear their seas.

 I hope you’ll give yourselves a pat on the back, brain injury mates.   You continue to write to me and relay to me how you navigate some of the most challenging and stressful circumstances of life for “normal” people without, often, the full cognitive capacity to manage them.  I cheer all of you changing jobs, losing jobs, filling boxes and moving, surviving divorces, raising teenagers, helping aging parents and trying to open CD packaging.  😉

I continue to believe that the challenges we face allow us the opportunity to be more compassionate to those around us.  It is a gift that is ours to open, if we choose.  And I know that my fellow tbi survivors out there can feel a familiar, bittersweet tug in their hearts when they watch coverage of the Gulf spill.   I hope, as the people of the Gulf  sadly and somberly move away from their broken nets and broken hearts, they happen to run into one of you somewhere along the way.  Maybe you can share a hug and a cup of coffee.

John Dryden said, “Fight on, my merry men all, I’m a little wounded, but I am not slain; I will lay me down for to bleed a while, Then I’ll rise and fight with you again.”
Keep on fighting the fight!  I love you guys!

May 6, 2010

Mother’s Day 2010

I must admit that, when you’ve lost your Mom and your “kids” are only capable of bringing you headless mice as presents, Mother’s Day pretty much sucks.  It’s probably a little like Valentine’s Day to the achingly single and the newly-divorced.  A day not quite made for you…Like everyone else got an invitation to the party except you.

You don’t want to see one more flower shop advertising Mother’s Day roses and tulips and hanging baskets and bouquets.  The commercials on TV leading up to the day are, at times, everything from saddening to maddening.  The actual day feels a little like getting the chicken pox on the day when all your classmates are going on the class trip.  You feel left out.  Lonely. 

My Mom’s lilac bush blooms every year just in time for Mother’s Day.  Those early years after her death, I would solemnly head to the cemetery on Mother’s Day with my bunch of lilacs to lay on her grave.  Driving past seemingly countless and relentlessly happy people buying hanging baskets and bunches of flowers for their LIVE moms.  Cars full of dolled-up women heading out to lovely laughing festive dinners with their children.   La La La La La…

 There I was, without my tail,  stuck in line at the cemetery behind all the other cars full of people waiting to drive in and find their dead moms.  Like the Dead Mom Parade.   It was awful.

I had to change things.  That day was so hard that I had to set down a little of the weight of it.  Too much to carry.  Empty out the bucket of too many tears.  I knew I couldn’t change the fundamentals of it but I could surely figure out something to make it a little less miserable.

I mean, beer is only going to take you  so far…

I knew that people find other ways all the time.  Like couples who cannot, themselves, give birth to children.  They adopt, they foster, they rescue pets…Mother’s Day is literally spilling over with wonderful people who didn’t just stop and quit with their disappointment.  Like any other facet of brain injury recovery, you have to find a way that works better and feels better.

So I went to the cemetery today.  I brought my Mom her lilacs and cleaned off the headstone.  Trimmed the grass around it.  This weekend, no doubt, I’ll think of her often and I’ll surely shed some tears.  But I’ve created ways to find some joy in a day that is otherwise so much about loss for me. 

I “steal a little mom” from some of the women in my life (you know who you are).  From time to time over the years, each has stepped in and filled my need for a Mom.  Standing in at awards presentations and being there for me to “bring my crayon drawings to”.   Being willing to “kiss the boo boos away” when life has kicked up its heels and deposited me onto my bottom.  Doing the things moms do and saying the things moms say.  I can’t thank them enough.  They are utterly treasured. 

So now I take more time on Mother’s Day to celebrate them.  I celebrate my friends in their wonderful role as great moms.  I celebrate my sister-in-law who is a terrific mom to my niece and nephew.  I celebrate my friends who are loving and caring moms to fur children.  We’ll get one of my Mom’s favorite foods and tell funny stories of her that push aside the tears and welcome the warmth of true laughter and fond memories.

I will find the good.  And there is always good to be found somewhere when you decide it’s important to look.

When life takes from you those things you counted on staying “forever”, you feel cheated and it’s just plain rotten.  It hurts.  I know, not only a lot of people who no longer have their moms, but also several moms who have lost children. 

These Hallmark Card Holidays aren’t always like the commercials.

And neither is life.

It’s hard to learn the lesson that life isn’t kidding.  That often we counted on a lot of things to be here that aren’t here anymore. 

We have to find other things to celebrate, to recognize, to invest in, to enjoy.  For those of us with brain injury, too often we confuse losing at all with losing it all.   The losses appear so complete that we can’t see anything beyond them.   We mistake losing A life with losing our lives.  Mistake losing a lifestyle with losing a lifetime.

There is a big difference. 

A few weeks ago the simplest of truths suddenly came to me and I laughed my fool head off.   I said to myself, “Kara, if you want to lose weight, at some point you have to start eating less.”   I can’t tell you how funny that was to me.  Even now I’m laughing.   A friend of mine who wants to be a published author was struggling with her inability to find her muse, unsnarl her writer’s block, create her perfect environment for writing, etc.  I said to her, “If you want to be a published author, at some point you have to just write the damned book.”   Oh did we laugh.

I can spend ten hours “getting ready” to go for a half hour walk.  Talking to myself.  Telling people on the phone that I’m going to go walking.   Thinking and anticipating and dreading and getting motivated.  Planning when I’m going to go.  At some point, if I’m going to go walking, I need to get up and start walking.

Laughing here.

People ask me all the time how to restart their lives, how to get going after their old lives are gone, how to begin again without the slightest inkling of which way to turn.   When we’re tempted to think it’s so hard and sticky and tangled, what comes to me is this:

If we’re going to start living a new life, at some point we have to start living a new life.  If we’re going to start living a new life, at some point we have to stop living our old one. 

Yikes, did I ever get sidetracked.   This is supposed to be about Mother’s Day.   OK.  Sorry about that.  I’m like a little kid with my attention span sometimes.   Angry Angry Tears Angry Tears Oh Popsicles….

Speaking of which, last week I went to see my 5-year-old nephew play in his first tee ball game ever.  My 3-year-old niece was a cheerleader.  It was one of those days that reach right in and wrap around your heart and paint a picture on it that you will return to many times to enjoy.  Life just bursting at the seams…

At one point Charlie got upset and ran right to his mom.  She wrapped him warmly in “it’ll get better” and “I’m sorry you’re hurting” hugs and soon he was off smiling and laughing and playing again.   I thought to myself, ah…mothers…all you mothers…

The countless comforting holds and hugs that, as adults, we no longer recall but wear somewhere quiet in our hearts.   The so many times we cried on your shoulders and heard your soothing voices in our ears-moments that planted the seeds of peaceful loving adults watered by the tiny tears of children. 

As adults, we often take all the credit for the boasting best of our character.   But I believe with all my heart that our bests had their beginnings when Mom sat us on the bathroom counter and kissed our scraped knees.  When she took us out for ice cream after losing the championship game or the spelling bee.  When she told us she loved what we made her when she had no idea what it was.  When she gathered us crying to her chest and told us we were important, loved and special.  

And yes, even when she made us pull weeds, do dishes and wash windows…

Sometimes we don’t have to remember the moments to believe with all our hearts how they touched us, shaped us and filled us.

We don’t get to have our moms forever.   But, at the same time, we do.  At some point we stop blaming them for how they failed us or left us or wronged us and we start recognizing how truly truly living and lasting their gifts to us remain.  We don’t have to go find them in some cemetery when they’re right here singing sweet lullabyes in our wistful hearts.

Happy Mother’s Day!

March 11, 2010

I Can’t Think Of A Good Title

I love the Olympics.  Aside from the fact that my favorite shows are all reruns for two weeks, I really look forward to The Games.   Two weeks of different sports and different stars, memorable and touching stories of the athletes and what propelled them to this often once-in-a-lifetime moment. 

I get all misty-eyed and patriotic watching the American flag being raised and our anthem played.  I love watching the Detroit Red Wings who are playing for my Mother and Fatherland, Sweden. 

The Olympics are a delicious escape.  A chance to marvel over jaw-dropping snowboard flips and elegant male skaters tossing spinning-top sequined women through the night only to land impossibly on whisper-thin blades.  Ski jumpers literally flying through the air like super heroes in children’s fantasies.  Adrenaline-charged blurs racing down icy slopes on skis and boards clocking mind-boggling miles per hour.

It’s breathless.  Exhilarating.  Like watching magic.  It’s two weeks of escaping some of the doldrums of February in Michigan when the Pistons are awful and the Wings are struggling to make the playoffs and the snow is black, plowed high in supermarket parking lots…

And then the equipment on the torch at the Opening Ceremony didn’t work.   The coach of a Dutch speedskater committed an awful gaffe which cost his athlete the gold medal.  The mother of a Canadian figure skater died of a massive heart attack three nights before her daughter was set to chase her lifelong dream.  And a hopeful kid from the country of Georgia flew smack-dab into a concrete pillar at 90 mph and died of a traumatic brain injury. 

The livers of  lives cannot escape the living of lives.

Crap.

I was thinking of those athletes tonight.  All of them.  Won and lost.  Known and unknown.  Celebrated and chastised.  The smiling men and women on Wheaties boxes and the never-acclaimed obscure athlete from whoknowswhereville carrying the flag as his nation’s only representative.  Two weeks later, a month…

What happens when the TV cameras leave and the venues are dismantled and the torch moves on to the next host city? What happens when the lights go out on what they probably consider the most defining moment of their lives?

Life, that’s what.  Life happens.  Life wakes up and scratches its head and puts both feet on the floor once again. 

More often than not, we are remembered for and we remember most those events in our lives and other people’s that were never planned or dreamed of.   Both good and bad, our paths, our journeys, take wayward turns and crazy hops right through the wickets.

That Dutch skater thought he was heading to the Olympics to accept the gift of gold.  Instead he is being asked to give the gift of gold-forgiveness.  That Canadian skater thought she was going to the Olympics to measure her best effort in a bright, shiny medal amidst screaming cheers of countrymen.  Instead she was going to measure her personal mettle in whispered hues of grace.  That young luger from Georgia likely dreamed of being carried on his countrymen’s shoulders in victory.  Instead they carried him on their shoulders in a modest pine box.

I love Tonya Harding.  You may laugh at that and part of me can’t believe I just typed it but bear with me here for a moment.  And no, I haven’t been drinking…

Tonya, you’ll recall, was embroiled in that huge Olympic scandal when her bodyguard/boyfriend took out rival Nancy Kerrigan before the 1994 games with a steel pipe to the knee.  Tonya was immediately branded, “Evil’s Rot In Hell You Dark Villain Mistress” and Nancy became, “All American Toothy Smile We Love You Win The Gold Nancy You Sweetheart”.

Tonya Harding is like all the rest of us, really.  We all have no one else to blame for most of the deepest holes we find ourselves in during a lifetime.   He lost his wife and his reputation because he got caught cheating.  She lost her husband, her house and her reputation because she couldn’t step away from the blackjack table.  He decided to drive drunk and got arrested.  She took a bribe and is headed for federal prison.  He ran up 80 grand worth of credit card bills and  lost his house.   They didn’t communicate for ten years and ended up in divorce court. 

What happens when a smoker gets lung cancer?  When a morbidly obese person who doesn’t manage his/her diabetes has a stroke?   When a lifelong alcoholic needs a liver transplant?  When someone acquires a brain injury because s/he was driving drunk or speeding or not paying attention or taking too many drugs or not wearing safety equipment?

What do we do when the toughest moments in our lives are inescapably our own fault?

I’ve seen regret puff up as anger and steal as depression.  I’ve seen self loathing brittle the very vibrancy of life.  Shame strip the every color from eyes. 

If I only had or hadn’t.  If I had only done this or that. 

Although not in any manuals I’ve ever read, drinking, drugs, and becoming a blaming, bitter betty have all been tried and tested as salves for guilt and regret.  Although I am fortunate that I didn’t cause my injury, I have a handful of regrets just like everyone else.  Even Frank Sinatra had a few, although too few to mention.

Regret is harder to live with than any symptom my injury ever caused.  By far.

Why do I love Tonya Harding?  Because she became a professional boxer and a country singer and, who knows, half a dozen other things after she blew her skating career. 

She took the hit.  She accepted her truth.  She realized the path she preferred and the one she had loved was no longer accessible.  She changed direction.  She reinvented.  She emerged.

Marion Jones, too.  You remember Marion.  She of the Olympic scandal which cost her her medals for doping.  She of the prison sentence for passing bad checks.

Today Marion Jones signed a contract to play for the WNBA Shock.   She took the hit.  She accepted her truth.  She realized the path she preferred and the one she had loved was no longer accessible.  She changed direction.  She reinvented.  She emerged.

My personal philosophy about regret is that, when you have a page that will forever stain your life’s accounting, hurry up and start writing.  Make the rest of the story so fabulous and wonderful that, by the end of the book, that one page counts mercifully little.  Make that dark moment the catalyst to something so much brighter that you might even, eventually, be grateful for it. 

For Heaven’s sake, don’t stop after it.  Don’t allow that to be the final word, the final page, the final memory of you.  When you make your whole life about one moment, that dark moment, nothing better can replace it.  Nothing better can become of you.  When you keep an umbrella up all the time, you can’t even see when it’s no longer raining. 

Thankfully, most of us don’t have to admit and accept our shortcomings in front of billions of people.  Just ask Tiger Woods what that is like.  Most of us don’t get but one chance every four years to better an underachievement, to best a disappointment.

Most of us get another chance every day.

For those of us fumbling and bumbling and stumbling thankfully out of the glare of public opinion, there is but a handful of people even keeping score and no one is harder to gain a pass from than that bugger in the mirror.

When people ask me at my appearances or online, how can they forgive themselves for causing their injury?  How can they move on from it, get past it, when it’s their fault?   When they “deserve” what they got?

I tell them no speeder ever meant to kill that family.  No kid playing with matches ever meant to burn the house down.  No parent who looked away for just a minute ever meant for her child to drown in the bathtub.  And no one ever got through an entire lifetime without something they wish to Hell or Heaven they could take back and do over again.   Intent is the difference between parole and a life sentence without it.

We have all failed.  We have all screwed up.  We all have things that we must accept as our own doing.   We all suffer our imperfection.  Our bad decisions.  Poor choices.  If our lives were all perfect and this world was all perfect, we’d already be in Heaven.

I tell them, just love.  Simply love.  Love something.  Something about yourself.  About someone.  Anything so that there is love in your life.  In your heart.  Something warm within you that calls to the better parts of you.  Wakes the good rest of you.  Reminds you of what it looks like so you don’t cast it off forever as a stranger.

Speak of the future.  Say the word “tomorrow.”  Say it out loud.  Every day.  Make a list of goals.  Even one goal.  Any goal, even the smallest.  Dream, even a modest dream.  Plan.  Something.  Anything so that you have a foot in tomorrow, in the future,  and not everything about you is locked in yesterday. 

The worst thing we can do with yesterday’s regret is to allow it to become tomorrow’s regret.  Or next year’s.  Or the one after that.  We quiet regret when we put laughter and good and better between ourselves and it.   We make it smaller when we put it in the rearview mirror and dare drive away from it.  Head for something we believe can be better.

Nobody knows how the next run is going to go.  We might miss a flag, hit a rut, wipe out, veer out of bounds, lose a ski…But just having the guts to climb that mountain again and again and to get in that starter’s gate….Knowing how badly it could go and how badly, perhaps, it has already gone…

Getting in that starter’s gate invites a future.  It closes the book on that last run and invites the next one to be better.  It affords the possibility that you won’t be remembered solely for that one lousy mark, low score, awful time.

On your mark.  Get set….

January 30, 2010

Happy Anniversary To Me :)

Those early ones were really something.  There was the one when I finally threw out the clothes they had cut off me in the ambulance after they broke my door and seats and extracted me from my car.  Then there was the one, after I started driving 18 months post-injury, when I stopped by the side of the road near the intersection of my crash and wept.  Oh yeah, that one anniversary when I wrote all the dreams and abilities lost to my injury on pieces of paper and tossed them in a fire…

The date.  The anniversary.  Some call it their bitter end.  Some call it their second birthday; their beginning.  Some call it the ultimate curse.  Others, the ultimate blessing.

On January 31st, 2010, it will be 14 years since my life was turned upside down in a car crash that stole my every version of normal.  Fourteen years since that beautiful, sunny, blue-skyed January morning darkened so horribly to crumpled metal and broken glass, chainsaws, backboards, oxygen masks  and rescue workers all around me.   

Fourteen years.

Friends have been asking me this week if I have any thoughts heading into this anniversary.   Those who know me well know how big I am with anniversaries.  Throughout any given year, I will note how long it’s been since my cousin’s cat died, since my first kiss, since my brother started his current job or my other brother and his wife left for Russia to adopt their children.  Maybe a little quirky, I know. 

So, when it comes to my anniversary, the one which changed so so much, there is little doubt that I would fail to mark it.  What a joy and a blessing it is to do so.

I told one of my friends that I am surprised how much my anniversary isn’t about my injury anymore.  That my life isn’t just part of the injury now;  that the injury is simply part of my life.

She asked me if I need to keep in mind that this is a blog about brain injury and wondered whether or not I should I write about more than just brain injury.  I told her that that is the whole point of all of this.  The whole goal.  That life HAS to become more than just the brain injury.  That is the whole thing, right there.

I have healed.  It doesn’t matter that I have such stupid balance that I still stumble and fall and need help, from time to time, with my walking.  It doesn’t matter that I still can’t process well late in the day or that my words get stuck and I can’t say what I’m thinking.  It doesn’t matter that I still have so many headaches, my memory isn’t great and I don’t have nearly enough cognitive stamina to navigate lengthy days or too much stimuli.

It doesn’t matter.  I have healed.  As I have often said, your recovery from a brain injury begins with the broken heart. 

I realized that I had healed when it no longer was about me all the time.  In the beginning, it was soooo all about me and understandably so.  And, for too long, even after everyone went back to their lives, it was all about me.  It was about what I had lost and what I couldn’t do and how I felt cheated and how I had symptoms that wouldn’t go away.  It was about my frustration and my anger and my disappointment and my heartbreak.  It was everything to me and everything about me. 

But I healed because I decided it was time to heal.  To get on with it.  To stop measuring recovery by only the symptoms.  To recognize there were other people who suffered because of my injury too.  Other people who were suffering with their own tragedies and losses.  Other people who needed me to start looking beyond myself.  And certainly other people who had it a helluva lot worse than I did.

My life had been patiently waiting and it was time to rejoin it.  Reclaim it.  Time to make the decision to get up and get moving again in some kind of direction, even if I didn’t know what direction that would be.  Surprisingly simple as that.

So it is with great pleasure that on MY day, when it is MY anniversary and MY blog and all about MY injury, I want to share something that is absolutely not about me.  In honor of healing, in honor of taking back my life and choosing to re-sculpt it, I’d like it to not be about me.  I’d like it to be about you.  🙂

All around me are people who still have their parents.  While the loss of mine is something that I will always suffer in some measure, I am so very grateful that I don’t have to lose them again.  Or lose any more than the incredible two I was blessed with.

I would like to share some of the things my brothers and I learned while taking care of our parents after their strokes and after the onset of our dad’s dementia.   So many of you will, one day, care for your own that I thought it might help.

My first thought would be that, if you are a caregiver, realize that it is as challenging as it is is rewarding.  It is as mentally and physically draining as it is soul and heart-enriching.  The people we care for need our patience and our respect, our warmth and our compassion without exception.  We need to be honest about our motives and our willingness and capabilities.  We need to realize that every change in them requires a change in us.

It helped me to spend 10, 15 minutes each day before waking my dad to get my head on straight.  I prayed.  I repeated positive affirmations.  I made sure I was mentally prepared to give him what he very richly deserved:  dignity, safety, the knowledge that he was loved,  peace of mind and physical comfort. 

If you are near my age, I’m 45 now, you know there are aches and pains and stiff joints that weren’t there in your mid-twenties.   Older people requiring help with transfers need you to slow down and ease up.  Many elderly people with cognitive damage will not convey pain accurately.  But they hurt or get dizzy if you yank them out of bed.  They hurt when you pull up an arm too fast or too high to get their shirt off.  Their now-thin skin can literally tear if you pull too hard on an arm or a leg.  They hurt when you rush them up and down and here and there.   They aren’t performing at our speed anymore and, especially if they become bed or chair-ridden, special attention must be given to the safety and comfort of their simple transfers.

Take it upon yourself to ensure that your loved one is receiving the kind of respect he or she deserves from doctors and healthcare workers.  I can’t tell you how many doctors didn’t even address my parents or the homecare nurses who spoke to them in sing-song silly stupid voices like they were children.  It is up to you to ensure that your loved one is addressed with the respect and dignity any adult deserves.

We didn’t realize our dad was wandering at night until the neighbor found him lying near his car in the street in the wee hours one morning.  Besides having one of us up for him around the clock, we installed hidden locks on the doors and kill switches for the appliances.  We put signs on each door saying, “Dad, don’t use this door.”  We set motion detectors to go off if he left his bed.  We hid the scissors when he cut the cat’s whiskers off, we hid the razors when he put shaving cream all over my dog and was going to shave her coat off, we hid the coffee when he was standing there in the middle of the night with a mouth full of coffee grounds…

You have to pick your battles, so to speak.  To figure out the difference between what is comfortable for you and what is best for your loved one.  While it may be suitable to repeat and re-teach a younger brain injury survivor the day and the date and the year and who the President is, some of those things no longer apply to the elderly parent who suffers dementia. 

Our dad would revisit different decades all throughout any given day.  While we first tried to force him back into the present, we found that he was often happier in the 1940s and that, in the end, it really didn’t matter what day it was or if he knew what year it was.  All that mattered was his happiness.  We sure couldn’t blame him for returning to a time when he was young and able and dancing and dating and enjoying the time of his life.  We ended up enjoying his many stories about his youth and finding out what he was like as a kid and a young man and a Navy corpsman in WW2.

For the cognitively challenged, you can do many things to provide them information without making them feel dumb for not knowing it.  I used to design my conversations to include information.  “Good morning, Dad.  It’s a lovely Tuesday in June.  Your eldest son, Neil, will be home from work in five hours.  Your middle son, Craig, will be coming to visit you on Friday.   That’s three days from now.  The temperatures here in Warren are warming up.  The Detroit Tigers will play the Indians tonight in baseball…..”

As the years passed, my dad spoke less and less.  He clapped all the time for a while.  He pounded on everything for a while (tables, counters, even us!).  Then there was the growling like a bear stage and, after that, the cawing like a bird.  We learned to learn.  We stopped forcing him into our version of right and normal and chose to embrace his.  To learn his new languages.   To step outside of the box and get creative.  We introduced music to him and found that, while he would not speak or engage in conversation, he would sing decades-old songs without missing a word or a beat.  A friend of mine made him CDs of all the classic Big Band tunes and we would sit at the kitchen table every afternoon and sing together, holding hands.

It helps to keep multiple copies of up-to-date emergency information handy.  My parents were rushed to the emergency room dozens of times over the years.  Often, the different departments didn’t share information.   I’ve had hospitals tell me to go back home and get his medication and administer it to him when he needed it.   There were doctors who told us we had to stay and watch him because he was in danger and they couldn’t keep him safe.   The one doctor told us that, if he stayed one more night, they’d have to give him so much “happy juice” that he would die so we’d need to take him home, despite the fact that he was fresh out of surgery and still bleeding internally.  Once I was called in the middle of the night to come back to the hospital and calm him and they asked me what med they should give him and in what dose.  

Whenever my dad was admitted to the hospital, I would pass out his information to each department.  I would put up a sign above his head describing his special needs and challenges.  He didn’t always chew and swallow and so my brothers and I had to be present at each meal because we couldn’t trust that someone would help him eat.   One time I was late and I came in to find him tied down with mittens on his hands, a plate of green beans, whole meat and brownies on the table (he was supposed to get pureed and soft foods), his mouth full of brownies with brownies and beans all over his mittens and shirt and bedclothes.

One of my biggest fears was that his cognitive deficits would create situations where he would end up being scared because he couldn’t understand or remember where he was or what was going on.  Every time he would be admitted to a hospital, I would type up a huge sign to tape on the table in front of him telling him where he was and that we would be by soon and that we loved him so he could be reminded whenever he woke up or wondered.  

Perhaps most important of all is something that applies to any caregiver, regardless of whether their loved one is a teenager with a brain injury or a parent with dementia:  Preserve yourself.  Take care of yourself.  Exist.  Get help.  Take breaks.  Make time to get out and connect with your life, your friends, your own interests. Caregivers disappear mentally and physically.  They get run down and burned out.  Their health suffers.   You can’t provide adequate, compassionate care if you become resentful or mentally fried or hopeless.  When your health or your mental state or your motives come into question, you can no longer be the answer.  Both you and the loved one you are trying to help deserve more and better than that.

And if one of your parents or siblings is the caregiver and they are taking care of your other parent, please watch them as well.  Get them to a doctor.   Make sure they are getting rest and vitamins and eating well. 

Oh hell, my word count is really up there.  Forgive me.  I’ve rambled.   But I’ve been on both sides of the fence of wellness.  I’ve received care and I’ve provided care.  Both good and bad.  I know, too well, that  its quality is so often a determining factor in the measure of recovery and sustainability. 

Perhaps it was the growing needs of my parents which helped me to heal.  Helped me to recognize how capable I was, even after my injury, to do something important.  Worthwhile.  To contribute.  To step outside myself and recreate a life that wasn’t, any longer, consumed with my injury. 

Too often brain injury is like one of those puzzles with all one color.  At first it seems so daunting…

But every hard puzzle begins with finding a corner.  And, once you find that corner, all you have to do is choose to turn it.  🙂

January 5, 2010

Becoming

I’ve heard so many times in the last few years, people shaking their heads and exclaiming, “What’s become of this world/this nation/this economy/ this old neighborhood?”

We sum up the people we know, have run into, or are gossiping about.  Well, she’s really become a fatty, a bitter betty, a crazy cat lady, a neat freak, a strumpet, an old maid.   Geez, he’s really become a workaholic, an absent father, a lousy drunk, a rotten bastard, a jealous asshole

What have we become?

The New Year seems the ideal  time to take a look at what and who we’ve become.  Some reflections are pleasant rewards for our efforts and blessings.  Others, grim and prickly reminders of lives that have fallen a little off the course we’d set.

Many of us don’t like the shape of things:  our bodies, our finances, our homes, our relationships.  Perhaps we’ve become lazy or disconnected, depressed or too busy.  Stuck on things that we lug into the new year like we did the year before and the one before that.

Many of us have become the victims of our lives.  Of our misfortunes.  Of our mistakes, misdeeds, misgivings.  Many become the keepers of anger and bitterness because we “could have become” so much more if this or that hadn’t happened or he or she hadn’t screwed everything up.

I was thinking about myself on New Year’s and all that I’ve become.  Some of it good;  other parts,  not so much.  Taking stock.  Comparing returns.  Looking in the mirror both literally and figuratively. 

 And then I received word that a high school classmate of mine had died on New Year’s Eve, not long before midnight.   And something clicked in me.

What has become of him?  Now nothing more will become of him?

And I decided that we are not simply what we’ve become.  It’s too final.  Like a destination.  Like we’ve arrived at a finality. 

And, as long as we are living, we have not become. 

We are becoming.

I wrote down what I am becoming.  I am becoming way too heavy.  Way too out of shape and inflexible.  Perhaps complacent and comfortable.  Maybe too opinionated. 

But I am also becoming a woman with experience, perspective and peace of mind.  Perhaps, even, a smattering of grace.

I love that I am becoming because it reminds me that I am living.  Becoming conveys movement.  It denotes life and change.  Participating.  Engaging.  Improving.

I continue to move forward, sometimes by my own choosing and other times when the feverish current of life propels me.  But I am becoming.

And so are you.

I have not become for I am not nearly finished.  I have set roots yes, some of which require nurturing and some of which could stand to be ripped out before they anchor deep. 

But the delicious truth is that, as long as we have not become, we continue becoming.  We still have the opportunity to become what we dream about, aim for, dare to be.

My high school classmate became many things:  a good husband, a doting father, a loving son, a police officer…But, sadly,  he is no longer becoming.

Are you?

My hope for this New Year is that none of us speak and live  in terms of the still, the final, the unchanged, the unchangeable.  That we recognize that becoming is about movement.   And a choice to direct that movement forward.

I celebrate in this New Year the subtle, tiny difference between become and becoming.  With one trip to the gym I am becoming more healthy.  With once decision to pass up those taunting chocolates, I am becoming slimmer.

We all are “this close” to becoming.  One smile to a stranger and we are becoming kinder.  One drunken night we hand over the keys and we are becoming smarter and safer.  One decision not to judge and we are becoming compassionate.   One good look in the mirror and we are becoming self-aware.   

Just a moment.  A quiet decision to change or to welcome.  A tiny step.  “This close” to becoming.  Becoming something we want.  Something we dreamed of.  Something better than what we believed we had become.

Happy New Year, all.  🙂

November 24, 2009

Succotash

When I was little, on Thanksgiving Day, my Mom used to make us put a couple of kernels of succotash next to our plates to remind us of how little the Pilgrims had and how grateful they were for it.  It was also to remind us how the Pilgrims and Indians helped each other and, also, to represent what we were personally thankful for.

Thanksgiving has always been a favorite of mine.  Moreso back when Michigan used to win more of those clashes with Ohio State…And moreso when I used to awaken to the smell of fresh pumpkin muffins hot out of the oven.  We’d eat them while watching the parade from Detroit and then my Mom would warn us all, “OK, now out of the kitchen until dinner.”

Thanksgivings at the Swansons… There was the one when all of the relatives got so blotto that they forgot to serve dinner.  They opened the oven door and stood around the roasting pan of dried up turkey, laughing and pulling off pieces to eat.

Then there was the year my Great Aunt’s dog, Cinder Lou, jumped up on the table and started mowing down the turkey right off the platter.  And the time we went to my aunt and uncle’s and it wasn’t until 5pm that we realized she had cooked the turkey all day without turning on the oven.  Or that one year my Mom cried because my brothers were out of state, eating Arby’s roast beef sandwiches.  That broke her heart… 

One of my favorites was that first year I was injured when, despite the burned rolls and limited menu and screaming headache, I realized that I COULD do the things I wanted to do, even with a brain injury.

And, of course, there was that Thanksgiving Day two years ago when my Dad died…

Holidays are a lot like life, I think.  Snapshots of life all crunched and schmushed into one day.  We fantasize about holidays like we do our lives.  We imagine and hope that the Lions will win, that everyone will get along, that our homes will be filled with lovely decorations, great food, loving people, family and friends all singing around the piano, lots of warmth and laughter…

Perhaps, too, we imagine that maybe the spouse won’t drink too much this year.  Maybe that special someone will finally forgive and call.  Maybe the child won’t be so angry, so lost, so distant, so indifferent.  Maybe the Mother-in-law won’t be so critical and maybe the Uncle won’t be trying to touch the niece.

We dream and we hope.  Some of us pray.  And we scurry and we hurry and we exhaust ourselves shopping and cleaning and hiding all the piles of unpaid bills and hoping that you-know-who doesn’t look behind the shower curtain or peek in the bedrooms…

Like with life, perhaps we page through glossy magazines, fawning over Martha Stewart creations of  ideal.  Wine glasses perfectly lined up and shined up and spotless silver so clean you could check your lipstick in it.  Meticulously-folded linen napkins as elegant swans decorating each place setting.  Serving golden-brown turkeys in high heels and painted nails.

But too often holidays, and life, don’t live up to the magazine covers.  Martha Stewart goes to jail.  Biscuits get burned.  The turkey, for some reason, ends up dry.  The potatoes turn out like goopy paper mache.  The kids argue and your back is killing you before the company even gets there from all the cleaning you did…

Too often we end up wishing them away.  Wishing them over.  Happy when all of them finally leave or you can grab your coat and head for the door.  Lamenting the mess.  Lamenting the cost.  Disgusted by whatever whoever and whomever did or didn’t do.  Again.

Like life.

Too often after childhood, we don’t put as many kernels next to our place setting.  There are loved ones we miss, dreams long abandoned, relationships ruined.  Jobs, abilities, confidence, looks and retirements lost.  We gaze around the table and, too often, sadly realize that, were it not for our name, we would not even hang out with some of these people.  Everyone so different.  Strangers in familiar faces.  

I read a story today of a man who, 23 years ago, was severely injured in a vehicle accident and mistakenly diagnosed as being in a vegetative state.  In reality he was simply paralyzed, unable to express that he was alive in his mind and in his brain.

For 23 years he stayed mute in his prison.  He thought and he talked and he dreamed and he  pleaded and he listened and he screamed.  All in his head.  I cannot even begin to imagine…

All he wanted to do is what so many of us fail to or choose not to or refuse to.  He wanted to express.  To communicate.  To be heard.  To share what was on his mind, on his tongue, in his heart.

My hope this Thanksgiving is that maybe this holiday we’ll all take a little extra time.  To actually look each other in the eye.  Maybe we’ll actually FEEL grateful for the ability to smell that first waft of turkey, that first taste of stuffing, that first sight of pumpkin pie.  Maybe we’ll slow down just long enough to actually hug.  To kiss. To touch an arm.  Take a hand.  To look around the table, look around our homes and our lives and SEE ALL THERE IS to be grateful for.

I know that I am blessed with abilities and options and choices.  I know love and I love deeply.  I carry so many generous, humorous, selfless, amazing people in my heart whom I am so thankful for. 

I’m not going to take the chance to lose the chance…I’m not even going to wait for Thanksgiving to be grateful.  I’m going to be grateful right now, here, tonight.  For all of me.  For all of you.  For the roof over my head, the clothes on my back and the food in my belly.  For the music in my days and the dreams in my nights.  For the options every morning to choose what kind of day I’m going to have and what kind of person I’m going to be. 

I’m going to be grateful for every moment of love, of warmth, of laughter we’ve shared.  All the gifts, all the love, all the shoulders, all the support, all the giggles you’ve given me. 

I wish for you, all of you, a great big mound of succotash this Thanksgiving.  Piled high aside your place setting.  Piled high inside your hearts.  May we all recognize our incredible bounties and fall asleep in warm beds while trying to count them… 

Happy, Happy Thanksgiving to you all.  Please, pass the succotash…

 

September 25, 2009

The Unforgettable Tests

What grade did you receive on your first quiz that fall in Algebra?  How many did you get wrong on your Zoology final?  What was that red-inked letter at the top of your third paper in Freshman English in college? 

Do you recall?

There are so many tests we sign up for.  To get your driver’s license.  To determine whether you are a nutball before landing a job.  ACTs and SATs and MCats and LCats and kitty kats…

OK, not kitty kats.

Your first debate.  First oral book report.  First interview.  First piano recital.  First 5K… 

Preparation.  Cramming.  Fear.  Conquering fear or succumbing to it.  The immediate response:  applause, satisfaction, shame, a lettered grade, a pass or fail, a parent’s disappointment or pride.

You blow away the Bar Exam or get blown away at the bar after you fail it.

How many mattered?  You can count the ones that did.  The ones that stuck.  The ones that hurt, wounded, fed or filled you.

I’ve come to believe that we choose the tests that will ultimately define us-determine the grades of our lives.  Maybe unknowingly, unwittingly.  Perhaps.  But we choose them.

We choose.

What are yours?

I’m not sure when the tests I chose became clear to me but they revealed themselves and I drew them close.  Close to my heart.  My success or failure in them would be a telling measure of my life’s accomplishments.  Major ingredients in the stew I call life.

Somewhere along the way I decided that there is no greater responsibility than to the children, pets and people in our lives who need help they cannot provide themselves.  What could loom higher?  Greater?  To me these felt paramount.

I helped take care of my parents for fifteen years, always aware of the inevitable ending.  The final test.  My job was, I imagined, to help deliver them to God, to Heaven, to death…with as much safety, peace of mind, comfort and dignity as I could muster.  I spent many days researching their conditions.   I spent many nights praying for the strength to do the right thing, whatever corner we turned next.  To stand up at the end and be there for them no matter how painful I suspected that moment would prove to be.

I practiced.  Studied.  There were pop quizzes along the way.  I did the Heimlich Maneuver when my dad was choking on Jell-O.  I carried him over my shoulder when he snuck halfway down the stairs in the middle of the night and couldn’t go up or down any more.  I dove between him and the ground when he lost his balance and his head was heading for the corner of the side table.  I cleared his airway with my fingers when he was choking on vomit.  I changed the dressings on bed sores those last days every two hours and moved all of his pressure points every 30 minutes round the clock.  I recognized subtle changes in behavior which indicated dangerous elevations in blood pressure.  I gave him aspirin and cold packs and averted strokes more times than I can count.

Getting ready to pass the test, I thought.  I felt ready.  Prepared. 

And then he died ten minutes after I left the hospital on that Thanksgiving night and I felt that I had failed.  Failed him.

Loved ones tell me that’s how he must have wanted it.  Chose it.  That it often happens exactly that way.  Certainly there are days I choose to believe that instead of the ridiculously-painful alternative.  After all, my mom died within an hour of us leaving her at the hospital on her last day.  Surely I couldn’t have failed them both.  Not after fifteen flippin’ years of preparing for those moments…

Other days I tell myself it really is about the journey and not the destination…Sometimes that helps.  But I can never quite escape the feeling that I didn’t show up for the final exam.  I feel like I climbed Mt. Everest and turned around a hundred yards from the Summit and started walking back down again.  That I ran 24 miles of a marathon and then simply stopped running.

How many moments are lost forever…

I don’t get to retake them.  There are no makeup exams.  I only had two parents.  Some days I’m like, Thank God we only get two because I couldn’t bear to bury another one.  

But it hurts.  Guts me.  Still.  It holds close where tears stay. 

The unforgettable tests.

Kids grow up.  Parents grow older.  Pets begin to slow.  Friendships drift.  Marriages hit rocky patches.  Years fly.

Which are your tests?

To raise children who will, one day, become decent members of society?  To show your kids how to handle adversity, bankruptcy, infidelity, cancer?   To repair a damaged friendship?  To rise to the top of your company or make the most money in your family?  To be the best sprinter, shooter, passer, kicker on your team?  In your league?  In the world?  To be skinnier than her or wealthier than him or more popular than all of them put together?

To survive whatever is your personal diagnosis?  To get the nerve to leave your marriage or get the nerve to try fixing it?  To make it to retirement?  To hold onto your job?  To have the best lawn in the neighborhood?   The loudest voice at church (we know who you are)…

Are the tests you choose as broad as wanting to green the planet and save the polar bears or as intimate as wanting to lose forty pounds or overcome your not-so-secret dependency on pain killers?

Do you know?

There are a lot of things that are difficult to live with.  Bad hair, of course.  U of M losing nine games last season, certainly.  No chocolate in the house when you’re PMSing, most definitely.

Traumatic brain injury?  You betcha.

But, for me, one of my remaining tests doesn’t feel like simply living with brain injury.  The test, in my mind, is to, every day, force my damaged peanut and faulty memory to recall what I’ve deemed more important.

I have friends and loved ones living with cancer, daily chronic pain, crippling MS, debilitating arthritis, slow-stealing dementia…

One of my tests is to remember even when I struggle to remember-that life is not to be wished away.  The end of a hard day, the end of the work week, the end of a seemingly endless sermon, the end of humid August. 

How dare I wish one moment of my life away when I know, too well, how frighteningly close I came to losing it?  Shame on me. 

My test, too, is to find balance when I have no balance.  To tally joy and laughter for every tragic, sad moment life reveals.  To find firm footing in the choices I make and the people I love when my legs are rocking and rolling like they have no bones.  To walk tall and confidently in the better parts of my convictions even when I must use a wheelchair. 

To seek out calm, quiet happiness, pure simple happiness, in my head when it is so often filled with loud pounding pain. 

To know that, of all the things that we can live with or end up having to live with, the worst of these, by far, is regret.

What is your test?

Your unforgettable test?

I love the saying that, “If you’re not coaching it, you’re letting it happen.”  I’m an athlete and a coach still in my head, despite what that snickering bastard of a scale says.

I believe that everyone has tests.  Unforgettable tests.  Tests which will define their lives.  We choose the subject.  We choose the class.  Sometimes even, we choose the teacher.

It’s September.  Football weather.  I raked today.  Nights are cool now.   Summer’s over.  I hear the bell sound.

Class is in session…

August 17, 2009

What Is It We Are Really Fearing?

In this current economic mess, even as there are modest signs of recovery, there is evidence that the patient is getting sicker.  There lingers a widespread palpable fear that is scaring the bejesus and sucking the life out of countless- more than a 94 degree afternoon with high humidity and bad hair.

Will I lose my job?  Will my spouse/partner lose his/her job?  Will I miss my mortgage payments?  Will I lose my credit rating?  Will I lose my house?  Will we have to move in with the in-laws?  Will I have to uproot my kids from all their friends and move somewhere else?  Will I have to pull my kid out of college?  Can I find another job?  Am I too old to change careers?  How can I lose my health insurance?

A thousand fears.  A thousand sleepless nights.  A thousand unanswered questions.

Maybe I’ve had too many cognitive martinis but it seems I’ve coasted through this recession from a curiously buffered and hazy distance.  A strange objectivity.  Watching it all happen around me.  Hearing the tormented worries of so many people I love and, yet, not feeling that same fear. 

Oh yeah, that’s right.  I already lost everything…

I feel bad when I hear the real fear in people’s voices.  They can’t hear me when I tell them they will make it.  They can’t hear me when I tell them it’ll be OK.  That maybe new opportunities are knocking.  That maybe their real life’s work is about to begin.  That maybe they are meant to emerge on a wonderful new path.

It’s too big right now, screaming in their ears.   Raging in their darkest, prickliest doubts.  Whispering even as they try to sleep, “It’s coming.  It’s coming…”

Ruin.

I was thinking today that perhaps it is so scary simply because they’ve never experienced it before.  We fear what we don’t know.   Sometimes it renders change and sometimes prejudice and often it isn’t as hard or awful as we’d feared.  We just feared it because we didn’t know.  Hadn’t been through it before.

So what does all this financial ruin mean?  What is this scary monster hiding under so many of our beds during this recession?  Would it help to know?

I can tell you I lost 80% of my wealth after my injury and subsequent inability to return to my career.  You can do the math on your own incomes and imagine your own lot but what it looks like from my front window is this:

When none of my insurances would accept responsibility for my situation 13 years ago when I got hurt, I didn’t receive any income for seven months.  Seven.  That would take us to next March right now if you stopped receiving any income today. 

In those seven months, I used credit cards, in large measure, to survive.  Thirteen years later, I’m still paying for a can of coffee I bought on my Target card in 1996…

After not getting money for seven months, I resumed receiving an income of 85% of my former wages.  I could no longer afford my new house so I downsized to a smaller house and, two months after I bought it, my former employer found a loophole that immediately terminated the disability insurance I was receiving from them.  Yikes, now I was in trouble.  But I hung onto that house for five years and that’s longer than this recession is going to last. 

You can do this!

Financial ruin means I don’t even look through the catalogs they continue to send me a dozen years later.  They sit in a pile in my corner for friends and relatives to page through when they visit.  

It means I continue to wear two pairs of sweats that don’t even have any elastic anymore (when they fall down, I tell myself I must be losing weight).  My t-shirts have holes in them.  I buy everything I can at the Dollar Store (except coffee-don’t ever buy coffee at the Dollar Store).  I have had exactly two sets of sheets for thirteen years.  I reuse vacuum cleaner bags.  Sometimes I use paper towel for coffee filters.  I ask for coffee and cream for Christmas.   Any new clothes are gifts. 

I color my own hair and even have cut it myself a time or two.  OK, maybe ten.  There aren’t maintenance actions any more.  No upkeep.  Not for hair highlights or dental checkups or rotating tires.  You go when there is an emergency.  You go when you sell your favorite mementos on eBay or in a garage sale.  Whenever you have an emergency, it takes months and months to recover even a hundred dollars.

You don’t have credit so, if you don’t have cash, you don’t get it.  You lose your house and you move back home into a basement.  Creditors call and they really don’t believe you when you tell them you don’t have any money.  They imagine that you are hoarding all your money and are simply enjoying hearing from them every day.

You meet friends for a meal out maybe a couple times a year.  You eat well one week a month when you can afford to buy fruit and a decent cut of meat or fish.  The rest of the month you gain weight on cheaper meats and fattening fillers of rice and pasta.  You go from sirloin to chuck, Folger’s to Kroger’s,  and from Jiffy to no brand…

You make presents for loved ones when you used to enjoy shopping for expensive gifts.  Walking the malls during the holidays used to feel exciting and giddy with a wallet full of cash and plastic.  Now there’s really no sense to it at all except for the exercise.

You wash your laundry more times than you’d care to admit in hand soap.  You hang clothes out to dry when you can’t afford to fix the dryer.  You simply sigh when the gutter finally falls off and you can’t afford to replace it.   You drive in the middle of August with your heater on because you can’t afford to replace the radiator.

Is this the fear?  Is this everyone’s fear?  That they will end up like me?

Imagine that.  To be the poster child for everything that everyone you know doesn’t want to end up like.  

Laughing here.

I’m laughing and not crying because I know that, when you’ve lost everything, you haven’t lost anything.  And when you’ve lost everything, you have no idea how much more you could lose. Or how much more you can gain.

When it all gets down to brass tacks, then you actually take a look at what the hell brass tacks even mean.  And, if you’re as fortunate as I’ve been, you realize that you didn’t lose anything that meant anything at all.

I don’t fear losing anything in this recession because they already came and cleared out the cupboard 13 years ago.  I don’t fear losing everything because I’ve long ago filled those cupboards with the things I found that were actually important to me in this life and actually irreplaceable.  And they weren’t anything I could order out of catalogs.

But what I do fear is losing the people I love because of the stress they are experiencing during this awful time in their lives.

Stress kills.  Make no mistake about it.  I’ve read that stress affects a body more than aging, obesity and smoking.  Think about that.   Although it’s easier said than done, worrying really doesn’t help anything.  Worrying is simply asking for things we don’t want.

You’d be amazed at how much satisfaction, happiness, reward and love you can experience and enjoy while living in your parents’ basement with an awful hairdo and eating plain rice twice a day.   You’d be amazed at how far you can go with a 12 year old car and three dollars in your purse.  It would blow you away how inexpensive it is to decide that different isn’t always worse and that making lifelong dreams come to life is extraordinarily cool at any stage and at any age.

I once had a fancy office next to an indoor waterfall, an assistant, expensive suits and fresh flowers on my nightstand every payday.  Now I’m an author and a public speaker.  I’m watching curled up Basset balls and calling high school football games and enjoying the time of my life.

The recession cannot take the only thing that really matters.  Not unless we allow it to.  It cannot take those people and pets we love from us unless we allow the stress to chip away at our mental and physical health, leaving us…

Dead.

Just for the fact that it’s almost 4 in the morning and I’m enjoying cognitive martinis after watching four Basset Hounds all weekend….Let’s pretend….

Say we all died today.  All of us.  Gone.  We all get to the other side of the lawn, waking from our dirt nap,  and we find out that THOUGHTS REALLY ARE THINGS!!!

That all we needed in our lives was to imagine, to voice, to believe, to determine, to strive, to dream….That all we had to do was to stop walking around saying we are fat cows or that we have huge butts.  That we simply needed to stop saying we would never get another job making X amount of money.  That we only had to stop saying no one will hire me, no one will love me, no one will understand me, no one will see that I’m good enough, pretty enough,  interesting enough, smart enough, capable enough or lovable enough…

What if we found out that all we needed to do was to become aware of how often we tell ourselves detrimental things that end up being drawn in and becoming self-fulfilling prophecies?  That all we needed to do was to realize that we are capable of anything?

Wouldn’t we all be red faced then?

Change is shocking.  You are humming along and feeling pretty good about yourself and tomorrow you lose your job.  Or you acquire a brain injury.  Or your spouse drops the divorce bomb.  Or the doctor’s office calls and asks you to come in to hear your test results.  Whatever.  A thousand possibilities.

Your life gets turned upside down.

If you realize what you truly need and you can look around each night and count it, you’re going to be OK.  If you’re fortunate enough to wake up tomorrow morning then you still have the chance to change and better what you don’t like about your life, regardless of how many arrows are coming your way.

We don’t have to waste time fearing the unknown because there’s already enough of the known to keep us busy.  We don’t have to fear what’s going to happen in ten years because we don’t know if we even have ten days.  A million things can happen to change every moment.  And if we’re alive and if we’re reading this right now and understanding it, we’re already armed with enough ammunition to make it better.  To make this life something we really want to live and enjoy, not simply to survive and endure. 

Happiness can be found beyond our greatest fears.  Dreams can be realized no matter the bank account or the stage in life.

Just ask the poster child of ruin.  🙂

April 4, 2009

Anger’s Place

In my speeches, my blog, and my online work with survivors, I talk so much about the good that has come out of my injury and the joy I find in so many things, sometimes I get the impression that I alienate people who are tempted to tell me to take my baby bunnies and all my sunshine and go…

When you’re angry, hurt, and immeasurably disappointed about how something in your life has turned or turned out, the last thing you’re searching for is Little Miss Sunshine telling you it’s all good.  I get that.  I do.

It’s important, I think, to recognize how important anger, frustration, sadness and grief are.  They are real.  They are healthy.  And they are essential.  When you are moving from catastrophe to a new life you never imagined, they certainly deserve their say. 

And that can be any new life.  Not just brain injury.  Loss is loss.  Change can be hard.  Your significant other has an affair or terminates the relationship you felt perfectly happy in.  You lose your job in this still-crumbling economy.  You lose your home or find out you have a very serious disease.  Everything changes when you didn’t ask for it.

I’ve listened to people all across the country who  have shared their feelings of guilt for not always remembering how lucky they are to have survived.  Whether it is their brain injury or any significant life loss, they are scolding themselves for returning to feelings they don’t wish to have any longer.

If you’ve lost a parent, a child  or someone extremely close to you, it doesn’t matter how many years it’s been.  Grief returns.  And there’s nothing to apologize for.  Life can be incredibly sad.  Incredibly painful.  No two ways around that.

What I try to convey is that there is a difference between the death of a life or lifestyle you once chose and an actual death of a person you loved.  There is a time when anger over TBI has reached a point where it becomes as debilitating as the injury itself.  And, when it is spewed out at the people around you who don’t deserve it, then it’s a problem you need to get help with.

I never red-flag periodic anger in the first two years after injury.  Knowing how difficult it is to understand the intricacies of brain injury and the challenges that recovery poses, I think it’s totally normal.  As the injury continues to injure by slowly chipping away at jobs and marriages and hopes for recovery, there are new waves of disappointment and painful loss.  Anger in itself can be a symptom of the injury, when the ability to regulate emotions gets damaged.

No, I’m talking more about the too many people I meet who are four, five, six years post who tell me they spend their every day yelling at God, their families and whatever friends are left because they are still so enraged they got hurt.  That’s a problem.

I would imagine there are instances in life when it would be awfully hard to set down the anger.  Sometimes I look at news coverage of the families of victims of homicide and I wonder if I could forgive the senseless taking of a life I so love.  I honestly don’t know.

I think the difference in the case of brain injury recovery is the very fact that we didn’t die.  I can be all the angry in the world  at the woman who ran those red lights and smashed into my car.  But, in truth, I’m just so grateful she didn’t kill me.  The story didn’t end that day.

And that’s why I do seek the gifts and feel the joy.  That is why the anger and the frustration and the grief were so short-lived in my case.  Simply because she didn’t take everything. 

There are people in today’s economy who are choosing not to recover from the loss of their fortunes.  They have chosen not to see how it all plays out.  How it could be.  How it might feel better one day.  How they might turn it around.  They have ended their lives.  Similarly,  the ones who kill their kids and then themselves after a devastating divorce. 

It’s not my right to judge someone’s loss or how that feels for them.   But I really feel like death is different.  I’m not a parent and I cannot imagine how the loss of a child would be.  Can’t imagine.  I still grieve over my mom and she’s been gone for ten years now.  My dad’s been gone a year and a half.  I imagine, like waves, the pain of their loss will return to me now and again for the rest of my life.

But for those recovering from brain injury, I’m only trying to point out that, after five years, when you continue to spend your every day yelling at your spouse or your kids or your friends, it’s time to consider getting some professional counseling to address this.   They’re still here and they still love you and it’s time to get some help before they’re gone forever and the loss is permanent.  Before the chapter claps closed for good.

To wake up every morning means we have been given the opportunity to make things better.  To decide that anger only empowers an injury that has already taken so much.  I don’t believe that any person lives the perfect life.  I also don’t believe that, had we not been injured, our lives would have danced merrily on without some event just as horrific, or worse, at some point.

So I believe instead that, because we’re still here, we have the opportunity to create and design a life just as good as the one we lost to injury, even if it doesn’t look much like that first one did.  It’s not “all better” without brain injury.  It’s not.  And once you realize that it was not all perfect then and that it’s not all perfect for those without TBI, then you realize that anger doesn’t need to be quite as all-consuming. 

That life you had before will always look better until you start filling this second one with new and better things.  You can’t live that first life anymore.  It’s gone.  It’s time to live THIS life.  Love THIS life.  Rock THIS life. 

We can do this!!!!

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