Kara Swanson's Brain Injury Blog

September 30, 2010

Blitz The Snitz

It matters little, really, that I’m a reasonably intelligent and rational woman with a fair take on most things.   It barely counts that I’ve undergone years of comprehensive therapy in order to engage the smarter, savvier parts of my abilities during challenging situations.   And it fails to register that snitting is often a normal facet of brain injury that can be controlled by anticipation and strategy.

I’ve beaten the bloody hell out of wedding dresses in a bridal boutique with my cane.  But we’ll get to that later.  Laughing here.

One of the most frustrating and embarrassing symptoms and effects of brain injury is the rapid onset of this crazy-feeling inappropriateness.  Or is that impropriety?  

To escape, to release, to implode, to explode. 

It is mortifying.

From very early on, I termed it, “having a snit.”  I would soon find out that there is both good and bad news about snitting.  The good news is that there are ways to recognize and avoid them.   The bad news is that it usually takes  some practice and a few horribly embarrassing and frustrating instances before you start conquering the bugger.

I’ve found that the gap between being physically and emotionally finished and snitting is akin to taking a brand new Camaro onto the expressway.  I’m at 60 mph before I’m halfway down the ramp.

When brain injury survivors are tired, overwhelmed, have endured too much stimuli or are thrust into a confusing, changing environment, we are prone to experiencing an emotional meltdown that is hard to stop once it gains momentum.

Remember the feeling of being 21, 22…  You’d had way too much to drink and you’d want the night to be over.  You’d lay down and the room immediately began spinning and you knew the night was going to end laying on the cold bathroom tile floor?

You knew what was coming.

Or how about when you were a kid and your mom would beckon you using your first AND middle names and you immediately knew whatever was coming wasn’t going to be good.  That feeling of dread…

Avoiding snits is all about recognizing the feeling of snits.  Recognizing that the situation is ripe for a snit, like when a cold front clashes against a warm front and the sky turns still and green and you know a tornado is coming.

My snits come if I allow myself to go for too long.  Way past my quota for any day of chaos, plans changing, too many people, too much activity…

I was helping a friend shop for wedding dresses that day and we had been to so many bridal shops and had seen so many dresses that, abruptly I was “done” and had nowhere to escape to.  There were too many people in the tiny shop and it was hot and there were literally thousands of dresses all puffing out into the aisles and I just started chopping at them.   Oh, I’m giggling here with embarrassment.

There was another time when I had been at the hospital for my dad’s surgery since 5am and I was tired by 3pm.  I was waiting for the update so I could head home to bed.   The doctor came out and, instead,  told me that they didn’t have anyone to watch my dad, he was freaking out, and I’d have to stay and watch him until my brothers could make it there by 6:30 or 7.   I had sooo needed to be done and home and I couldn’t handle the change in plans.  So I went into the waiting room down the hall and beat the hell out of the couches and chairs with my cane like it was a baseball bat.

I had a snit one time when I couldn’t take one more dirty dish and I literally threw every plate and utensil angrily into the dishwasher from about three feet out.  Cups like fastballs, clanging and banging and bouncing off onto the kitchen floor.  Butter knives like harpoons….

Not one bit of pretty.

In every instance, and there have been more, it is easy to dissect the factors which contributed to my snit.  In hindsight, I recognize how I allowed myself to invite the different ingredients into a dangerous, volatile concoction.

I needed  to change things.

I have long-held the notion that healing from brain injury is about learning to successfully navigate it’s twists and turns.   Some of the symptoms don’t go away as much as we learn to jump over them, sidestep and avoid them.  

You learn about the injury and its effect on you and you create ways to avoid the outcomes that don’t serve you.  It’s like, if you can’t change the fact that it’s going to rain, you either stay inside or you put on your galoshes, your rain coat and grab an umbrella.

I know a survivor who, early on, would just cover herself up with a blanket when she became overwhelmed.  I can’t help but still smile at the visual.  A room full of people talking and too much stimuli and there she is in the middle of it all with a blanket over her head.   God bless her, I love that. 

I remember being at a brain injury conference one time.  I had spoken in the morning and spent the rest of the day speaking with survivors, family members and professionals who lined up to welcome me and tell me their stories.  All of a sudden, I was done and I knew it.  I told my cousin, who was helping me that day, and she said, “Oh, there’s so many more people in line, Kara.  Can you hold on a little longer?”

I made it maybe another half hour and then I said, again, “I’m done.”  This time I just disappeared under the table and refused to greet even one more well-wisher (my poor cousin, explaining that!).   Then I promptly said, “I’m leaving” and took off without her, heading out of the hotel with no notion as to how I was getting to the airport.  All I knew is I had to get out of there and NOW.

Over the years, as I’ve come to know this “passenger”, I know that being tired breaks down my walls.  When I am at the end of a busy, challenging, changing day, I will cry more easily.  I will swear more. I’m more apt to say something inappropriate.   I lose my inhibitions like the night of the group skinny dip.  But that’s a story for another time.  😉

It’s important that brain injury survivors and their support people learn to recognize the elements that contribute to their meltdowns.  Physical, emotional and everything in between.   Crossing that line and suffering a snit is not only embarrassing; it can be downright dangerous.

I fear the young survivor who loses her inhibitions at a high school prom or a college frat party and ends up allowing or initiating sexual behavior that she will regret or that might land her in real danger.  I fear the soldier who is concealing or unaware of his/her brain injury, needing to endure lengthy dangerous days with a rifle in hand.   I worry about any survivor driving a car too late, using machinery or handling tools or the professional writing scripts or making financial decisions that affect a corporation.

We gotta blitz these snits!

Plan the day.  Be smart and realistic about what you can handle.  Schedule a nap.  Quiet time.  Minimize those instances when you are besieged by too many people (concerts, ball games, carnivals).  Take along trusted support people.  Get help in identifying warning signs and setting up boundaries.  Share the concerns.  Trust your support people when they tell you you need to call it a day.  Have a backup plan.  Have an escape route.  Get a good night’s rest before a crazy day.  

Thankfully, it is rare that I have a snit anymore.  I’ve learned to anticipate them.   To feel them coming on.   To implement smart strategies which keep me, for the most part, out of danger and out of embarrassing situations.   I haven’t beaten up a wedding dress now in six years.  And I kept the coffee mugs with the chips in them as reminders of how smart I have to be now in order to maintain control of the situations I face every day.

I’ve learned to blitz the snitz and there are brides all over Michigan breathing a heavy sigh of relief.

Advertisements

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.  🙂

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!

June 16, 2010

Don’t Assume Forever

Pepsi Cola hits the spot.  Twelve full ounces, that’s a lot.  Twice as much for a nickel too.  Pepsi Cola is the drink for you!

My cousin would argue the world is ending.  When more than a million frogs carpeted Greece at the end of last month, many went running for their Bibles to see if it really had to be locusts or if that was a technicality and mere frogs could warn us the end of days.

If you live in Michigan, there are a lot of things that just don’t seem right lately.   Strange happenings.   The University of Michigan is no longer a perennial football power.   Half of Detroit’s government has gone from hailed to jailed.  Longtime Tigers’ broadcaster Ernie Harwell has passed away.  The Great Lakes are threatened by predatory fish.  Red Wings’ Captain Steve Yzerman is no longer a Red Wing, officially.  Motown remains Slowtown in its recovery from financial disaster.

On a larger scale, Tiger Woods goes from hero to zero in a short span of sickening headline-filled months.  USC’s storied football program lands  just short of a death sentence while the landscape of college football will forever be changed by super conferences and realignments.  Many celebrities we watched and were entertained by for decades have passed into history.  The BP oil spill in the Gulf has damaged, changed and ruined countless lives, life styles, and habitats.

It’s a strange time.  It feels vulnerable to many.  Foreign and fearful.   So many of the things and people we’ve long counted upon have changed.  It’s not just the brown pelicans in the Gulf who are confused about where to land, where to return.

Without our prodding, in most cases.   Without our consent.  Life has a way of hijacking the bus, so to speak.  Making its own way…

Last Saturday was my nephew’s last tee ball game of his first season playing.  My brother coached.  My sister-in-law, my other brother, my niece and I all enjoyed a nice family day. 

My niece is three and a half.  She asked me if I have a father.  Simple sweetness…

If I’ve learned anything in watching my comfort blankets fray and fade over the years, it is that we can’t count on much to remain.  No matter how unlikely it was that that oil rig would blow…No matter how unlikely it was that Tiger Woods was stealing adult moments in the backs of car seats in church parking lots….

Life is like Michigan weather.  If you don’t like what it looks like, just wait a  few minutes…

Which brings me back to last Saturday and watching my brother coaching his son.   Even with my lousy memory, I can still toddle back in my mind to recall my brothers themselves in impossibly-small tee shirts knocking the bloody hell out of that rubber tee.   Grass stains and painful raspberries from slides on the rock-hard ball diamonds that filled our childhoods with the innocent cheers of Americana.  The faint jingle jingle of the ice cream truck on a warm June evening.  Parents in lawn chairs and kids running through the sprinklers.  Sharpening popsicle sticks on the sidewalk (kids nowadays can sharpen popsicle sticks on their Game Boys or run through Wii sprinklers).  😉

How quickly the pictures change.   From black and white and boxes of slides to digital cameras and full color and sound videos.  Our fathers move along in them.  From looking like our brothers and our sons to a little wider, maybe.  A little less hair, perhaps.  A few wrinkles around the edges.  Sprinkles of gray near the temples.   And yes, in some cases, an utter loss of fashion sense.  Laughing here.

Seems too quickly we are digging deep into our heart full of memories to just once more hear the sound of their voice.  Their laughter. 

What I’d give to hear my Dad ask me once more if I’ve checked the oil in my car lately.

It’s Father’s Day this Sunday and I will wear like light summer blankets the memories of sitting on my Dad’s lap wearing my, “Daddy’s little girl” pajamas.  Of him holding me up above the huge counter to watch the pizza man make pizza and singing  the Pepsi Cola theme song from the Sixties (I can’t remember how to get home sometimes from my own subdivision but I could sing you the Pepsi Cola theme song from the Sixties).

My hope this weekend is that we all just simply take a look around at all the long-constants that have changed lately.  Everything we counted on and imagined would stay the same.  Maybe even took for granted and stopped appreciating.

Our now entices, pokes and implores us not to dare believe we hold an endless number of Father’s Days with our Dads.   I envy the sweet opportunity for you to hold the big warm hands now weathered with more life piled behind than in front.  Oh, to get to shop for a card!   To get to pick out yet another tie or golf shirt.  To wrap up another box of golf balls…

I so envy you all. 

Happy Father’s Day to my brother, especially.  Seeing you, Craig, in a role that delivers me back so sweetly, absolutely warms my heart.  I’m sure Dad is smiling on you…

And to all of you fathers who find what it takes to express your love, to voice your care, to share your knowing, to make the time, to prioritize positive examples,  to stand up, to show up, to embrace the responsibilities, to roll around in the grass, to carve the pumpkins, to teach your sons and daughters how to throw curveballs, to read them to sleep, to comfort them during thunderstorms, to show them how to bait a hook, to make them feel like your special little girls even when they are grown women, to teach them how to parallel park and take them to their first ball game…

And yes, for those of you who hold them up so they can watch the man in the apron behind the counter toss the pizza dough…

Thank God for you. 

There will always be fathers but there won’t always be Dads.  For those who understand that, I sit with you at the end of the bench, knowing my name won’t be called again.  But for those of you still in the game-PLAY!  Play hard!  Play the heck out of the time you have. 

Have a great weekend, everyone.

Happy Father’s Day.

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!

April 13, 2010

Keep The Gems

When my Mom died in 1998, I quickly tossed out all the clothes that she had worn after her stroke.  Her medicines and all the other reminders of the part of her life she did not choose.  Did not want.  Did not like.

It took me a lot longer to get around to sorting through her belongings from the part of her life she DID choose.   Every evening bag reminded me of my parents getting all dolled up and going out dancing.  Every earring, every pin, every necklace…brought back a memory from elementary school or a flash of a picture of her at a family wedding or a holiday.  Her aprons.  Her sky blue eye shadow from the 70s.  Her wedding ring.  

The sound of her.  The feel of her.  The smell of her.

Sorry, Mom.  The rubber swim cap with the big rubber flower on it didn’t make the cut.

So when my Dad died 2  1/2 years ago, same thing.  The next day I threw out his “stroke clothes”.  The easy-close sneakers.  The medicine bottles.  The sheets from the hospital bed.  The medical equipment.

But, like I did with my Mom, I left most of his things alone for a long time.  While I grieved.  While it hurt. 

When I finally could walk into his bedroom without crying,  I went through his room.  I kept some of the things he had chosen.  The things he had filled his life with.  A drawer full of him.

We all have been or will be faced at some point with choosing what is left after someone dies.  We are charged with clearing out closets and drawers and even refrigerators.  Emptying out and selling cars and houses.  Sorting through their choices, deciding what is important, what is valuable, what is worth keeping.  To us now.  Moving forward.

There’s no confusion when someone dies because they are no longer here.  We go to the visitation, we attend the funeral.  Sometimes we even watch them being lowered into the ground or we see the urn which holds their remains.  They are gone and, while there might be great anguish and grief, there is rarely confusion about the actual fact that they are no longer physically living and alive with us.

We move on without them because it is painfully clear we are without them.  They are no longer walking, talking, breathing.  And life continues even when our pain is so deep and screams so great that we believe the whole world should stop for it.  Tomorrow comes. And the one after that comes too.

Maybe that’s why it’s so hard to move on after brain injury.  For as much as those lives of ours have died, we remain alive.   When we are confronted with the belongings of  lives that no longer live as we lived them, we aren’t just throwing out someone’s old shoes.

We’re throwing out our dreams- the items which proved we were able and successful and accomplished in a life that got taken away.

It’s hard to convince someone that their life is in the past when, in fact, they are standing right there living it. 

Damn.

So, what do we do?  I chose not to keep all of my parents’ stuff because so much of it reflected the worst times of their lives.  I didn’t need to keep the reminders.  I have those in my heart.  In my memories.

I kept the gems.  Those items which brought them pleasure and proved they were able and capable and accomplished.  Those reminders that they loved and danced and hosted and laughed and were talented.   Those items which connected me to dinners with them and holidays with them and moments with them that I will, forever, cherish.

Last week I came across my old softball glove and, when I held it, my heart winced.  It tugged like it tugged when I was going through boxes and found all the stuff from my desk that my employers had cleared out for me after my injury.  My nametag and the marble name plate that sat on the desk of able.  Of capable.  Of accomplished.

Too often, after injury, we don’t just keep the reminders, we keep reminding.  Because we haven’t died, we are physically and emotionally attached to the items which, in reality, belong to a life that is gone.  Like my parents things, those boxes of work stuff and athletic equipment are from a life that doesn’t exist as it did.  It has died.  

And I had to let it.

We donated my Dad’s hospital bed to a woman who was suffering with MS and who had slept in a broken bed for years because she couldn’t afford a new one. 

But, in order to give her that bed, I had to strip it of my Dad’s linens.  Throw them out.  Wash it down.  Bleach it.  Shine it up.  My brother’s using my ball glove as he helps coach my five-year old nephew in his first season of tee ball.

We can’t make things better and move on if we can’t let what’s already gone, go.

Keep the gems.  The lives we chose before our injuries surely held many.  And, like my Mom’s silver owl necklace from the 70s or my Dad’s favorite camera, we can feel comfort in the memories they trigger.  We can celebrate and continue to adore how they enriched our lives.

But we have to make room for this new life.  Just as I had to clear out that hospital bed so that we could move in a couch, so do all of us need to make room in our new lives…

For new life.

It’s Springtime in Michigan.   Ahhhh….The grass has greened.  The robins are hopping along.  The apple blossoms, cherry blossoms and lilacs are racing to explode.  The Tigers are playing.  The Stanley Cup Playoffs have arrived.

It’s time for Spring Cleaning.  Well, after I finish fall cleaning from last year.

But…you get what I’m saying.

It’s time to make room.  Time to gently box up yesterday and make room for today.  Set a place for tomorrow at the table of possibility. 

We all have to face, not only the deaths of our loved ones, but the deaths of things we loved.  Of situations.  Of relationships.  Of comfort zones.  Of family structures.  Of job securities.  Of financial freedoms.  Of physical abilities. 

We all have to sift through the rubber swim caps and the silver owl pendants and the softball gloves and the marble nameplates of our lives.  

And while it’s not easy, the absolutely delicious kick is that we get to do it.  We get to choose what is worth keeping, what is worth storing, what is worth passing on and what is worth throwing out.

We get to open up the windows of possibility.  Let in the fresh air of maybe now.   We get to dust off the long-neglected potential that once burst through our hearts with anticipation.  That feeling of Spring.  When everyone wants to run around without a coat on.  Drive with the windows down and the radio up high, singing our favorite songs. 

It’s time to bag up the disappointments, the heartaches and the what might have beens….Drag ’em out to curb and get excited about how we’re going to fill the space we’ve created.

Keep the gems.  🙂

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.  🙂

December 20, 2009

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.

 

 

 

Next Page »

Create a free website or blog at WordPress.com.