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. 

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. 

Merry Christmas

I’ve been listening more closely to the myriad Christmas carols on the radio the last couple of weeks (I refused to listen to the ones already playing by Halloween).  I thought something might ignite a theme for a Christmas blog, as music so often inspires me to write.

John Lennon’s lyrics, “And so this is Christmas and what have you done?” keep poking at me.  I know recently of several people who didn’t make it to this Christmas and I wonder for how many of us this upcoming Christmas will prove to be our last?  What then?  What have we done?  Maybe more importantly, what haven’t we done yet?

Are we making the same old resolutions this New Year?  Holding the same grudges?  Complaining the same complaints?

Tangled in the same issues.  Fighting with the same people over the same stupid things…Stuck, stuck, stuck on yesterday, in neutral, under rote…What have we done?  Or, better yet, what have we changed?  What have we dared to change?

Although not Christmas-related, I’m also reminded of that saying, “In order to get something you’ve never had, you may have to do something you’ve never done.”  I love that.  I know that, for so many, me included, there remain reruns of even years of drudgery.  So many brain injury survivors struggle with what is lost and what is gone and what is ruined that every day too many tend an altar for “the life before” while the life today and the life tomorrow waits and waits, disappearing in shrinking windows.

And brain injury survivors certainly don’t own the patent on redundancy.  Even as our limbs may not move, we aren’t the only ones paralyzed.  Seems most of us quickly return to familiar, cling to unchanged, immerse ourselves in tired routine-even when we already know and don’t like the outcome.  Whether it’s because of a sense of obligation, a feeling of disregard, fear, laziness, lack of awareness…we just keep on trudging and slogging through each day and each year as if there is an endless supply of them.

There isn’t.

I discarded most of the Christmas carols for one reason or another.  I couldn’t think of a blog to write that might have something to do with Grandma getting run over by a reindeer (they never reported head trauma).  I decided upon, “For yonder breaks a new and glorious morn.”

Ahhhh….

Picture your child, your niece, nephew, or grandkids on Christmas morning.  Remember, even yourself, that wonderful feeling…

Anticipation.  Glee.  Excitement.  Bring on the morning; there’s gifts waiting!!!!

Too often we forget that that hasn’t changed one bit, Chia Pets notwithstanding.

Sure, most of us aren’t in footie pajamas anymore.  And, for many, there aren’t parents to shake and wake at 4:30 in the morning because presents need to be unwrapped NOW.

But, make no mistake about it, the presents are waiting.  And not just on Christmas morning.

Another day.  Another chance.  Another possibility.  A new and glorious morn!

To change.  To forgive.  To seek forgiveness.  To finally start or to finally stop.  To genuinely be glad for people.  To do the right thing.  To summon the courage.  To leave or to decide to stay.  To pick up the phone.  To pick up a pen.  To stand up.  To voice a long-quiet opinion.  To sing.  To dance.  To stop being cruel.  To stop being angry.  To stop being jealous.  To actually participate in our lives, in our families, with our friends.  To find love, seek it out, acknowledge it, respect it, express it, make it, appreciate it, celebrate it….

For yonder breaks a new and glorious morn!  What better gift?

Too often we waste our mornings.  The birds in quiet hollows wake singing outside the window but we’re hammering our alarm clocks for five more minutes of sleep.  The precious sun, full of promise and warmth, slowly climbs the wall once again while we’re running around screaming at the kids and frantically searching for car keys.  The new snow glistens like perfect diamonds but we’re too busy cursing the shoveling and the window scraping…

A new and glorious morn.

Let’s not rush.  There’s only so many of them left.  For any of us. Heck, we take a gazillion pictures now on our digital cameras and we barely even look at them.  We text and we email so quickly and without thought that sometimes we’re sending things to the wrong people and other times we can’t remember what we’ve sent at all.  Our kids run out the door and we can’t remember what they were wearing because we didn’t even stop to tell them good morning, I love you.  Our parents call and we rush them off the phone because we’re already ten minutes late for six different obligations…

A new and glorious morn.  The gift of choice.  Of opportunity.  Of more time.  More precious time.

I wish you all a Christmas morning of simple peace.  A hot cup of perfect coffee, perfect tea.  A moment’s reflection.  A quiet new dream.  A feeling of child’s wonderment.  An appreciation for all that you’ve accomplished.  A slight nod to what silently waits.

I wish you all tomorrow.  And the one after that.  Moment after single, blessed moment.  Like drops of water that create the oceans of our lives.  Each a piece of the puzzle.  An ingredient.  And yes, a gift.

For yonder breaks a new and glorious morn.

　

　

　

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…

 

Paying By The Inch

It’s fourth and goal from inside the one.  The safe field goal will tie the game and send it into overtime.  But you’re on the road and the crowd is rocking.  Your quarterback’s pleading during the timeout.  Your offensive line wants you to believe in them.  Begs and demands that you believe they can push forward and gain a few blades of grass and a shocking upset.

You throw off your headphones.  Shake off your coordinators all yelling in your ear.  You take the chance.  You send in the play.  You go for it.

They stuff your quarterback.  They stop you short and you lose the game by inches.  The papers blast you.  The bloggers scream for your head.  The alumni clap-close their checkbooks.  The day after your season ends the Athletic Director announces they won’t be signing you to a new contract.

Inches.

We pay by the inch.  All of us.  Too many around the waist increases our chances of acquiring this disease and that condition.  Inches dictate whether or not the new couch is going to fit through the door or whether your car is going to fit into the tiny garage at the condo you’re looking to buy.   They reveal whether you are in style or hopelessly out of date.  On target or wide right.

So much of our looks and how self conscious or confident we become depends upon inches.  How long our noses or chins or feet.  By how many inches we boast in strategic places, by how many we suffer in all the wrong places and by how many are missing in places we’d hoped for better…

How much does an inch cost?  Ask any carpet salesman.  He’ll tell you.  Or ask a plastic surgeon.  A butcher.  Ask any freshman boy undressing for the first time before swim class.  Or any girl who hits six feet tall by the time she’s in the eighth grade.  Ask the long jumper or the pole vaulter wearing the silver medal. 

How much do we pay for an inch?

Time and time again we’ll hear stories of injuries, accidents, crashes, tumors, bullets…Doctors saying, “She was lucky.  One inch to the left and she would have been paralyzed.”  Or, “An inch higher and it would have pierced his heart.” 

It’s not just football that’s a game of inches.  Life is.

I’m not sure how many inches it would have taken that day, in the middle of that intersection, to kill me.  Or to spare me completely.  A few to the left; a couple to the right?  How many inches between a close call and a closed casket?

Life continues on or life changes or life ends.  Inches.

But it doesn’t take a ruler to determine what “this close” means.  I consider my stubborn headaches and haphazard balance, the shoddy memory and the occasional ridiculous butchering of the English language simply payment for the inches.  The inches that saved me.  The inches I measure between dying in a crumpled vehicle crash and living a gift every day I’m still here.

And I’m more than happy to pay.

How many inches have changed your life?  Dictated your future?  Did he swing his fist and miss so you stayed?  Did the oncologist tell you that the size of your tumor was still small enough to treat and beat?  Did you turn back to say, “I’m sorry” before they walked out the door for good?  Did you open your eyes after the roadside bomb exploded to find the buddy beside you dead?

How much should the inches cost?

If the chance at a happy life is what we’re buying, what then are those inches worth?  How much are we willing to pay?

As survivors, we can get all tangled up in how life was supposed to be and how much better it was before it was changed and screwed up and turned upside down by some breath-taking, choking, just-plain-stupid diagnosis.  We can cling to before and cast a defiant ear at those screaming to us that it doesn’t change anything.

It’s easy, or maybe easier, to comfort with before.  To elevate and deify before.  To cling desperately to before.  To refuse now.  Or to throw anger at it.  Pills, booze.  Anything.

Something to quiet the hecklers in the mirror taunting, Why me?  Why did my house get leveled by the tornado and nobody else’s?  Why did I get the parents who were absent addicts?  Why did my husband run off with my sister?  Why did I get the uncle with the groping hands?  Why did I get the *%^#ing brain injury, tumor, bad heart, curved spine, brittle bones, missing legs, failing eyes or the million other possibilities in life?

We can deny it, avoid it, run from it, drown it, disguise it.

Or we can pay for our inches. 

We can remind ourselves with each payment that this is for the inch that saved me.  This is for the inch between Stage Two and Stage Four.  This is for the inch between chronic back problems and paralysis.  This is for the inch between brain surgery and brain death.  This is for the extra day, extra week, extra year, extra chance to spend one more moment with the people and pets I love.

Is it worth it then?

It is to me.  I’ll suffer every stupid headache for every moment I can think and speak and write and express.  I’ll walk like an absolute goofball and suffer every stumble and every fall for each step I can take towards a hug, towards someone I love or something I enjoy, or while holding hands walking next to my niece and my nephew.  I’ll lose words and get stuck on words for every chance I still get to say, “I love you” or “I’m sorry” or “Good morning.”

How many inches are you willing to pay for?  How are you planning to pay?  No credit cards accepted here. 

Payment’s due.

Every inch that saved us.  Every inch that kept, spared and protected us.  Every inch that measures another day on the calendar.  Every inch between us and the moment we stop measuring.

It takes 72 inches to bury us.  It takes one to move forward. 

One inch to more than yesterday.  To away from rock bottom.  To better.  To OK, maybe. 

One inch to living.  To living again.

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…

Life’s Resume

From the time, it seems, we are barely in high school, we are coached, advised and prodded to start putting together our resumes.  We are taught to acquire “smart” victories and garner certain strategic awards, rack up hours of community service and put together a comprehensive picture of our best selves in order to make us marketable and fine choices for what we hope will be satisfying and well-paid careers.

In today’s economy, with so many jobs lost and so many people needing to reinvent themselves, the scrambling unemployed and under-employed are retooling their resumes and hurrying to add more attractive fonts and eye-catching phrases that “pop”.  A lifetime’s worth of work needing to fit onto a single page. 

While I was watching coverage of Senator Kennedy’s funeral today, it struck me how full his life’s resume.  Story after story this week and into today of instances and events, gestures and words which so many consider selfless, humorous, generous, thoughtful.  Unforgettable.

I don’t think all of his fit on one page.

Made me wonder how hard we work to pad our life’s resume.  Made me wonder how much we impress upon our young people the importance of filling a life’s resume that will highlight a history of selflessness, humor, generosity, and thoughtfulness.

Senator Kennedy had a huge family.  He was charged with filling the paternal role for fatherless nieces and nephews.  He was a Senator.  A public figure.

A busy guy.

And yet so many have told how he personally called all 171 families of those who died in 9/11.  During the week his nephew JFK, Jr. was missing and then found dead, he called every day to check on one of his staffers who had lost his mom.  Story after story.

He made the time, took the time, prioritized the time to pad his life’s resume.

These are the things that I remember.  These are the things that “pop”.

Is it important to ask, from time to time, what will they say about me when I’m gone?  What am I doing to fill my life’s resume?

Some will laugh and cast aside the notion, stating that they don’t care because they won’t be there to worry about it.  But I think the questions are critical in inspiring us to build a volume of work and deed which is notable for its compassion, valuable to the people we raise and influence, and memorable for it’s grander humanity.

Our time is so fleeting here.  What can we do in this short period of time that will last beyond it?

Is it simply our children?  What, then, are we actually teaching our children?  What are they going to take of our lives, our words, our examples?  What, today, would they write in their eulogies of us?

Maybe most important is to keep close the truth that we do not possess, every one of us, the gift of long life.  Perhaps it is worthwhile to not keep our life’s resumes for that time in the future when we believe there will be fewer crisis, fewer demands on our time, fewer challenges…

Today may be the last day for us to add to our life’s resume.  What is going to pop?

What will our spouses, partners, children, friends, neighbors, colleagues-say about us?  Is it all that we intend?  Is it all that we hope?  Is it already enough?  Right now, are we enough?

Or are you like me, humbly realizing today how much work lies still before me, praying for time.

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. 

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…

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.