Kara Swanson's Brain Injury Blog

June 14, 2019

Things That Have, Never Before, Happened

Filed under: Uncategorized — karaswanson @ 1:53 pm

When I fall back a little…when I stop from anticipating outstanding, even for a day….I look for evidence to re-inspire me to keep overachieving.  To keep anticipating extraordinary.

This week the Toronto Raptors won the NBA Championship for the first time in their franchise’s 24-year history.   The St. Louis Blues won the Stanley Cup Championship for the first time in their 52-year history.

Things can be done that have never been done before.  Things can be done that nobody thought possible.  Things can be done when people keep anticipating extraordinary.

Rock this life!!!

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June 12, 2019

Mistaken Angst

Filed under: Uncategorized — karaswanson @ 2:56 pm

I think, for so many of us, there is such great fear and dread and anger for our futures because we fear that now Fate has tipped the scales against us.  That we will now and forever be measured from behind the eight ball.   That we will always be counted pennies short on the dollar.  That we will live unfair lives from here on out.

The truth is that, for those of us who did not suffer greatly-altering frontal lobe injuries that might prevent us from choosing our behaviors, we have been angst-ridden mistakenly.

Thank God.

In the end and until the end, we won’t be measured for brain injury or not.   We won’t be measured by how we fail to duplicate those lives we lived before.

That’s only in our heads.

We will be measured by things that are available to most all of us, still.

We will be measured like the one who can still work 80 hours a week and coach his kids on weekends.  We will be measured like the professional athletes, the school teachers, the President of the United States…

We will be measured like your spouse, like your kids, like your friends and neighbors.

We will be measured by whether we gave good or bad.  Whether we chose dark or light.

We will be measured by how we impacted each day and each person we encountered.  Selfish or selfless.  Honest or devious.  Helpful or unobliging.

That is the truth.  Our truth.  One to embrace.  One to cherish.  One to celebrate and to be grateful for.

That is the truth.  🙂

June 1, 2019

Everyday Status

Filed under: Uncategorized — karaswanson @ 12:11 pm

If you take a bit to actually look at the time line on your Facebook page, you’ll notice how, no matter what you post, everything makes its way down.  The greatest of achievements…the saddest of news…the cutest of goose videos….

All get bumped by newer things.

Unfortunately, for so many of us stuck in stalled recoveries, it’s like we wake up every day and go post on Facebook:

I sustained a brain injury!

We just keep re-setting each day and then, even if we DO post other new things, they are still never very far away from the last or the next post that we have a brain injury.

It anchors us to that bottom line.

If we posted that first day on Facebook that we had sustained a brain injury, chances are we would have received comments and emojis from virtually all of our family and friends.  Lots of sad and shocked emojis.  Lots of comments and cheers for a speedy recovery.

And then we’d post again.

And again.

You can imagine that, after several posts, there would be fewer comments.  Fewer responses.  Fewer emojis.  You might even start getting comments like, are you OK?  I’m worried about you….

People would tire of the same old post.  They might even unfriend you because the topic is a bummer and they would probably consider you to be a bummer, by then, too.

As it is on Facebook, we have to get out of our stuck place.  We have to stop starting each day with that one detail about us and start showcasing all the other facets in our shining diamond.  We have to allow our news to fall lower in our time line.  We must encourage it so by replacing it with newer things.  Fresh things to report.  Activities and accomplishments and special time spent with loved ones.  Every day.

Things that make us laugh.  Things that are new in our lives.  Things that are important to and about our loved ones.  Cute videos of goosie gooses, absolutely.

Life.

And living.

 

May 15, 2019

They Got Us To Here

Filed under: Uncategorized — karaswanson @ 12:21 pm

From those of us who grew up in the 70s and before, there is a deep, deep well of fond and funny stories of the cars we drove when we were young.  Before the sleek and long-lasting materials of today, most of us cut our teeth driving vehicles that generated stories we never tire of telling.

Everything rusted.   For those of us who suffered northern winters, we were usually pulling out the Bondo in Spring to try and patch the rusting ridges around wheel wells and fenders.  Heavy muffler exhaust pipes rusted and the holes would make our cars too loud to sneak home after curfew.

One of the most exciting aspects of owning a car those decades ago was the installing of a car stereo.  Back then cars arrived with factory-installed AM radios and, as kids, we couldn’t wait to buy that awesome 8-track and, later, cassette-playing stereo.  It was a great badge of honor to proudly wear for those of us who became savvy enough to install our own stereo.

My one brother had a car from the 70s whose color was a pale peach.  We called her the Peach Bomb and it took two people to start her (one to stick a pencil in the choke).  My other brother drove a late-sixties rag-top, Electra 225, that poured rain onto the passenger whenever he turned a corner.

One of my earliest cars was gifted to me when it was already 17 years old but had only 11 thousand miles on her.  Because she was barely driven all those years, the bottom had all but rusted away and, on the passenger’s side, all that stood between my passenger and the pavement was a floor mat.  When I’d drive in the winter with someone in the passenger’s seat, the snow and ice would fling up and fly up and spray them in the face.   It would swirl in the car like it was a blizzard-inside.  LOL.

One of my most-favorite car stories is of a handsome gentleman car that I drove for 8 years.  I took such great care of that car.  His name was Hank.  But, every time I would take him in to get an oil change, the mechanic would ask me why I didn’t take better care of my car.  I couldn’t understand that.  I was diligent and invested in all his upkeep and care.  I kept him clean and up-to-date on all his engine needs and maintenance schedules.

When I finally turned him in, the man at the car dealership told me that, unbeknownst to me, Hank had been totaled long before I ever met him.  Ten years before, Hank had been stolen, driven across the nation and totaled.  He was returned to the owners and, somehow, he was rebuilt and re-painted and sold under false pretense.

I guess the point I’m trying to make is that…those cars got us here.  Got us through.  Protected us.  Escorted us to our favorite people, favorite events, jobs and life journeys.

They got us here.

The people of my generation who tell and retell their early car stories do so with a fondness and an appreciation.  Those cars, with all their funny stories and quirky traits and dear names were our companions during some of our most treasured life adventures.

And that’s where we come in.

Let’s promise ourselves that, when we are turned in for the last time, that those around us are amazed that we once had been totaled.  Let’s help get our favorite people to fabulous places.  Let’s be dear parts of their life stories, fondly told and re-told in the future.

All of us, after lingering injuries, will have our issues.  Sure.  We might need a pencil jammed in the choke to help us get started in the morning.  There might be parts of us that need a little Bondo and we may have some loose nuts or screws or rusted pipes that make our whole sashaying a little clumpy, a little loud, a little sputtering…

But let’s get ’em there.  All our people.  All our pets.  All our everything that matters.  Let’s get ’em there.   Let’s be willing.  Let’s be undaunted.  Let’s add what we can to sweeten the music we hear.

Let’s get ’em there.

April 30, 2019

Fig Lips

Filed under: Uncategorized — karaswanson @ 10:29 am

Here in Michigan, per usual, the Springtime comes in fits and starts.  We have enjoyed glorious days of breezy sunshine and blue skies in the seventies.  And then, with rare fail, we shiver and bump along, grumbling at the forecasts for late-April snow.

We wait and we wait, so many of us putting off our plans, our anticipations, our….happiness.

Yesterday the forecast said we would have chilly showers and struggle to reach the high 40s.  Through the early hours it poured a steady blanket of damp, November-like rain.  My headache stormed.  My arthritis bucked and cussed.

I was tired of waiting and so I made my own fresh start.  My own….Spring.

I went to the store and, at first, I began to fill my shopping cart with all my typical normals.  And then I thought, nope.  It’s Spring.  It may not look and feel like Spring and I may be tempted to wait again and longer.

But nope.  Not this time.

I cleared my basket and I started again.  I bought different versions of every staple.  New flavors and scents and versions of every hair product, shampoo, soap and body-fixer-upper I use.

I now have some kind of black coal face towelettes simply because I love the packaging and I am such a sucker for packaging.  I have sugar scrubs and lime mousse made for curls, even though I have poker-straight hair.

I am trying to inspire my hair to over-achieve.

Out of the dozen or more choices of Burt’s Bees tinted lip balms, I chose Fig.  FIG!  LOLOLOL.  I now am going to have soft, luscious fig lips.

And I am delighted to the point of giggling at myself.

We can’t just wait for Spring to come.  Not outside our doors and not inside the windows to our hearts and our souls.

We have to make Spring in any way and in every way we can.

I wish you all Spring, inside and out.  Go treat yourself to lips of watermelon, raisin or hot mocha.   I double-dog dare you to be as sassy as me.   Kiss your winter good-bye, both outside and in, with your sultry fig lips.  :)))))

Rock on, warriors!!!!!!

April 14, 2019

Where Is The Best Of You?

Filed under: Uncategorized — karaswanson @ 10:55 am

Most of us in the brain-injured community think that, without quibble, the best of us can be found pre-injury.  Back in the day….

We speak with sad fondness and some with sharp anger, still, of better days and better ways we enjoyed before these injuries plucked us from our fabulous and deposited us here, where find ourselves.

I recognize this “yesteryear longing” in my friends and loved ones who, only now, are old enough to recognize the fading and sagging and softening and blurring of aging bodies and minds.

Not to be a fly in the butter here but I think everyone’s wrong.

You were never more important than you are today.  Never more powerful and capable to affect the world around you.  Never more gifted the opportunity to imprint and impart good upon this world and to and through the loved ones in your life.

To be honest, no one much cares who we were back then, anymore than they care to hear yellowed stories from the so many who wish to replay their glory days of high school or college fame on stages and fields and courts and in classrooms.

Anyone who has glory days to recall are fortunate and good for them.  Those memories and stories and faded news clippings will feed egos for a lifetime.

But for us, any of us, brain injury or not, who we used to be isn’t going to help around the house today.  It’s not going to help our kids with their math homework or their confusion about sex or their golf swing or jump shot.  Who we were back then isn’t going to teach a proud son how to tie a tie or how to fill a tire with air.  It’s not going to help a daughter with her Spelling Bee words or her curveball or the confusing ways that boys are acting now.

All that good and better we used to be isn’t going to rub the tired shoulders or draw the warm bath for that partner who is so stressed and weary because he or she is carrying an extra load now.  It’s not going to clean the house or do the laundry or lighten the load in any way.

That’s for the us of today.

The people around us, the ones we love most, don’t care so much anymore of any long-fading glories.  When life is racing by in chaotic, noisy, changing households, the glory we have to give…need to give….is the glory of the day.

The glory of today.

Our loved ones don’t care that we can’t do what we did twenty years ago or ten years ago or two.  They want to know that we are joining today.  That we are battling with them. That we are sharing and reducing their loads, their stresses, their demands.

Our kids, our parents, our partners, our friends….they already know what we must learn as quickly as we can:

The person we left back there can’t help today.

But we can.

We can help today.

Can you spend a little time outside yourself?  Outside of this.  The loss and the anger.  Can you spend some time with them and for them, being NOT the person you loved before.  But, instead, being the person they might want to love again tomorrow?

For most of us, the bar is not set as high as we fear it.  The demands are not as great as we imagine them to be.

It’s simply about asking, “How can I help?”  “What do you need?”  “Is there something I can do?”

Makes all the difference.

If you can choose that…If you can choose now…

Then the best of you is right here.  Today and tomorrow and, God help us, the day after that.

That’s the truth.  That’s our truth.

March 22, 2019

“You’re Crippled…Get Used To It!”

Filed under: Uncategorized — karaswanson @ 8:00 am

“You’re crippled.  Get used to it!”  With all the uncountable things I’ve forgotten, that comment, said to me by a balance specialist more than twenty years ago, stays.

I wept in his office that day.  He abruptly left after proclaiming what he did.  His nurse came in and held me while I cried.  She apologized for him.

I have never forgotten.

Over the years I have realized the truth in it.  Yes, his delivery was disgusting.  His utter lack of compassion was appalling.   But, by definition, crippled means “unable to walk or move properly” and that is true.

What I also took from that moment was significant in my successful recovery.

For one, a doctor gives you his diagnosis, his prognosis, his best guess, his opinion based on your facts and his experience.   Some will prove true and some won’t.  Some diagnoses will beat us and some we will overcome.

But it is simply a capturing of a moment.  One that can change in a million ways.  It is up to us to respond.  To apply.  To investigate.  To try and prove false.  To continue to create a better outcome than we are sentenced with.  To get other opinions.  To try more than we’ve tried.  To try differently.  To change, as we have to.

In my mind, I am not crippled at all.

The other significant thing that that moment, crying in his office, taught me….was that we can avoid many many hurt feelings when we choose wisely the sources from which and from whom we seek compassion and understanding.

Survivors have told me for more than twenty years how they are so devastated that their spouses or their kids or their parents or doctors don’t understand what they are going through.

How could they?

We cannot keep hitting our heads against the wall, so to speak.  We cannot expect that a person without a brain injury would understand what it’s like to have a brain injury.

Yes, they can love us.  Yes, they can support us.  Yes, they can comfort us.  Yes, they can show compassion for our struggles.  But it’s not fair to them and it’s not fair to us to expect them to understand what this is like.   They simply cannot meet that need.

We go to a restaurant when we are hungry.  We go to a gym when we need to work out.  We go to a salon when we need a haircut.

You wouldn’t go to a priest for understanding of a troubled marriage.  You wouldn’t go to a middle schooler for understanding after you got a divorce or lost a child.  You wouldn’t go to a civilian for understanding of the nightmares of fighting war.

While they might have comfort, compassion, even sound counsel or guidance…they will not have understanding.

The people in our lives cannot be expected to give us what they don’t have and it’s not right for us to ask.

There are, sadly, countless people in our community in whom to seek understanding.  Support groups on Facebook.  Meeting groups in the community.  TBI Conferences…

Blogs by sexy gals eating cupcakes :)))))

Just please do not seek understanding from people who cannot gift it.  You can’t get your hair cut at a restaurant….Nobody needs the additional frustration or hardship or hurt feelings.

No, I won’t ever forget that time in that doctor’s office.   I wish I could remember where my keys are, instead.  But, for as much of a cad as he was and how cold he proved to be, I have sifted through it to find the good.  To make it mine.

What do they say?  Forget the pain;  Remember the lesson.

We will always welcome you here.   We will always meet you and greet you at the door with warm armfuls of understanding.

Happy Spring, everyone!!!

 

March 7, 2019

Up To Us

Filed under: Uncategorized — karaswanson @ 3:50 pm

Our stories will be written, with or without us.  By those we’ve impacted.  By those left behind.

Some will measure us in a simple timeline.  This is where we started.  We did this then.  We did this then.  We did this then…

Some will measure, instead, using deduction from evidence of how we spent our time, where we spent our money and with whom we chose to be with the most.

Some will measure us through a narrow lens of their personal experiences with us.  Who we were to them, what role we played and during what decade or time period we were in their lives.  They will sum us up through their own perceptions and with their particular biases and slants.

Many will decide they don’t care what anyone thinks or that, hell, they’ll be dead when all those judgements are passed.  True enough, that.

But for those of us who wish to write the stories of our lives….for those of us who wish to make clear the intentions and choices, high points and struggles…for those of us who wish to leave no doubt in those we feel most strongly about…

Then that’s a great starting point for brain injury recovery.   For any recovery.

I’ve heard so many people tell me how they fear being remembered just for their brain injury, just for their nasty divorce, just for their felony conviction, just for their cancer diagnosis, just for their dead child, just for their horrible weight gain, just for their addiction…

Just for their failure, just for their loss, just for their bad luck, just for cruel fate.

For each of us then, before we go and before we leave the end of the story to others, let’s ensure that there is no murky confusion.   Let’s clear up and clarify and decide and own.

We can say someday, someday….and they will report that, too.  We can dig heels in after disappointment, after being cheated, after being damaged.  We can sit with our anger, our indignance, our stubbornness, our pride.  We can build walls around us that keep out fear and danger and the chance of being hurt.

They will report that, too.

Or we can work to ensure that, no matter the measure and no matter the measurer, we will certain the outcome.  We will trust the stamp.  Because we chose good people around us who read more than the headlines.  Because we tried at good and, even when we failed, we tried at good.  That we made sure and certain that the ones most important to us knew, undeniably, how we cared for them and cheered for them, supported and loved them.

If it matters to you then don’t let bad be the last thing they see, the last they know, the last that they measure.  Not brain injury, not dark intentions, not unkind words, not cruel actions.

They WILL remember.  In some measure, in some way.  It’s up to us how important it is to have a hand in what’s written, to color the timelines, to warm the memories.  To put good, positive, memorable, fun, loving distance between the darkest of our hours and the brightest of our days.

 

 

 

 

 

 

 

 

March 6, 2019

Let Me Share a Secret….

Filed under: Uncategorized — karaswanson @ 1:39 pm

If any of you play computer games on Facebook or from some other gaming app, you know how addictive they can be.  I’ve been playing two specific games for years now and I’m almost embarrassed by how high my levels are.  LOL.

The one game is particularly enticing.  It invites me in with its bright colors and fun characters.  When I pass a level, it sings to me and sends me gifts and colors dance and rockets shoot off.   It’s fun.  It makes me feel good.

Sometimes I come across a real hard level.  A bugger.  I’ll try and try and it seems like, for the first couple dozen tries, I run out of lives or moves and I am not even halfway to the goal.  It is frustrating and I’ll roll my eyes and throw up my hands.  Sometimes I will “punish” the game by taking a few days off from it.  I’ll try to make it jealous by enjoying the bings and sings and flings and things from another game.

And then I return.

Little by little, I get better at those bugger levels.  Each new morning I am given  game tools to use for that level.  After a few days off, I return to many tools and, often then, I am able to whoop that level and move on.

Some of the levels are easy breezy.  I fly through four or five of them before I bump up against a new bugger level and I’m back to the frustration of it.

There have been times I have enlisted the help of my friend, Linda, because she and I are wired so differently.   She is a musician and a tech guru.  I am not blessed with prowess in either of those fields.  Sometimes, on a level that I have struggled with for a month, she can just click click click and it’s done.

Hmmmmm.

Sometimes, yes, there are swear words.

Through the several years now I’ve played it, the message repeats and is always the same.  Some levels will be easy.  Some levels will stop me for days, weeks and longer.  Some levels will need a differently-wired brain to go at it from a different viewpoint.  Some levels will require that I wait and seek out additional tools to help me meet that particular challenge.

And always, always, the feeling of progress and achievement and fun make me feel terrific and I return again.

Oh….and that secret I was going to share from the title of this blog entry?

The secret is:  That’s how successful recovery works after brain injury.  We keep at it.  We return again.  We take some time off when we need a break.  We return.  We enlist the tools available to meet the demands of harder levels.  We get help from people who think differently than us.  We celebrate our victories.  We enjoy the colors and the sounds and the gifts.

And we go at it again.

February 20, 2019

Installing Success

Filed under: Uncategorized — karaswanson @ 8:35 am

One of the reasons so many of us fail at New Year’s resolutions to lose weight is because, at that time of the year, most of our homes are still cluttered with leftover Christmas candy and New Year’s Day football bowl fun food.  For those of us in wintry states, New Year’s often arrives with blistering temps and unforgiving winds pushing perky salads aside in favor of more carb-heavy, comfort foods.  Soft, warm sweats and horror-covering parkas allow us a denial and avoidance that often hinder our weight loss efforts.

Most of us realize that, if we wanted to lose weight, we wouldn’t fill our fridges and our cupboards with Hostess Cupcakes, cookies, candies, donuts and cakes.  Similarly, if we planned to bring home a new puppy or kitten or tiny person, we would need to safe-proof the house to ensure that curious new baby didn’t get into trouble around stairwells, electrical sockets or adult ingestibles.

The same thinking is great for us after brain injury.

How are we setting up our homes and our schedules to bring out the best in our brain injury recovery?

I find that, often times, people who write to me with problems in the home for themselves or with a survivor often have not re-created their lives for success after brain injury.  By identifying good and bad triggers and installing appropriate activities, many of us enjoy marked progress in our every-day battles.

Someone has to get out of denial.  Whether it is the survivor or the people who care for him/her, there has to be a time when it is realized that the medical course of treatment has its limitations after brain injury.   For there to be continued progress, there has to be continued steps toward it.

How much is in the tank?  For most of us with brain injury, we suffer a significant loss of cognitive function on a daily basis when we have extended beyond our limits.  For me, I can be as sharp and as capable as anyone I know and then, once I hit my limit, I’m a stone.  That’s it.  All done.

Because I have been at this for more than twenty years, I know my triggers and my limits.  I know what zaps my cognitive energies and I can feel it when I’m slowing and when it’s time to get myself to a safe and quiet place.   Identifying limits and triggers is key when designing your successful life with brain injury.

Invest in the nest.   It’s key for the survivor and/or the caregiver/s to really look at the home situation and to assess how damaging it is to recovery success.   The survivor needs to be efficient with his/her competent time each day and then be able to rely on a quiet, safe space to recharge and recover.

Are there busy kids and excited dogs and lots of rooms blasting TVs and music?  Is the family routine chaotic and ever-changing?  Are there people dropping in and out all the time?  Is there a place for the survivor to retreat to?  A quiet, safe space?

A smart schedule is one of the best brain injury tools.   Most of us have smart, sharp cognitive time available to us.  Most of us have stone time when we have reached our limits and when we need to close it down and recharge.

Most of us don’t get it right all the time and that can invite stress in the home, friction in relationships and even dangerous situations.

I know I’m excellent early in the day.  I know that, if I have to announce two basketball games in the evening, I can’t do a lot of stimuli-laden activities during the day.  I know that, after a long holiday or visit or party, I will probably be a slog the next day.

The things we know and the way we use them to our advantage can help us design a plan and a place that works for us.   If the survivor is a student with early cognitive sharpness, then you choose college courses or the most difficult high school courses for early in the day.  Maybe you opt out of loud, busy gym courses or take care to schedule them at the end of the day.  You schedule in down time for a nap or rest right after the worst of any day to re-charge.

Don’t waste precious cognitive fuel on unimportant things:  For example…you waste cognitive fuel if you ask the survivor what they want for dinner.  For most of us, there are a million things to choose from and places to eat and we struggle to try and choose one.  Instead…conserve the cognitive fuel by asking the survivor, “How does chicken sound for dinner at six p.m.?”

Uncountable choices waste cognitive fuel.   Don’t ask the survivor, “What do you want to do today?” or “What are you in the mood for?”    These are little things but, by shaving off the waste, you can enjoy more cognitive sharpness each day.

Don’t waste cognitive fuel by subjecting the survivor to tons of stimuli, changing plans, unreliable schedules or pop-up activities.  Although some cannot be avoided, it can’t be a way of life for someone trying to improve their recovery.

Many of us get frustrated when the medical side of recovery stops.   It is frustrating and, often, scary.   We have to start looking at that time (if we haven’t before then) and realize it’s our time to step up and step in and keep the recovery moving.

Successful brain injury recovery invites us to think outside the box and to choose what works over what, maybe, everyone else thinks is normal or what we have done before.  Maybe the college student needs to get out of the dorm and into a studio apartment.  Maybe the adult survivor can “create more fuel” by working at home or going to the gym during off hours or shopping from home on-line.

I save cognitive fuel by living alone and keeping a quiet nest.  I do my swim laps late at night to avoid noisy gyms.  I shop on line instead of fighting crowds at malls.  I take myself to parties and events so that I can leave when I need to.  I get up early and do my important work and plan my schedules when I am rested, quiet and thinking clearly.  Sometimes I cook big batches of food to last for many meals so I don’t have to waste cognitive fuel three times a day trying to figure out what to eat.

Trim the waste and gather the fuel.

Shaking off denial, getting to know the survivor’s “fuel tank” and when cognitive efficiency is at a high, designing the home, removing the fuel waste and structuring the schedule to make use of high cognitive time with rest and recovery periods to follow will all help the survivor thrive.

Medical treatment ends.  It does.  But recovery success does not have to.  That’s up to us.  We can continue to make things better.  We can do this!!!!!!!

 

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