Kara Swanson's Brain Injury Blog

November 27, 2014

Thanksgiving, In All Her Glory

Filed under: Uncategorized — karaswanson @ 2:08 am

Thanksgiving had always been my favorite holiday.  All my life.  I have always loved Autumn in Michigan.  Crisp, colorful leaves and cider mills and favorite, soft sweatshirts…All those years when my Michigan Wolverines were lining up against the Ohio State Buckeyes late in November with a Rose Bowl berth on the line.  Christmas was still ahead and Thanksgiving marked the beginning of a wonderful, magical season full of great foods and great people coming.

I loved my Mom’s chocolate turkey cookies and her stuffing and a house full of friends and relatives eating a turkey that was, literally, too big to fit in the oven.  My Mom baked pumpkin muffins in the morning and she and I watched the parade from downtown Detroit.  There were pies cooling and a fire crackling and I formed a lot of my versions of ideal all those years.

And then my Dad died on Thanksgiving Day seven years ago and it has really never been the same.

We rushed out of the house that afternoon, turning off the oven and leaving the turkey to fend for herself.  Potatoes on the stove top.  Sweet potatoes on the counter.  Rolls left to dry in a basket on the table.  Butter wilting.  The sound of the Detroit Lions left on the TV.

And I guess we have never been the same, either.  Even unspoken, that day screams in each of us..

But tonight, as I was beginning to arrange the kitchen…While I was putting the Thanksgiving china in the dishwasher and gathering the serving utensils…

I felt that old familiar tug.  That same giggled thrill of a time long-past.

Thanksgiving, I knew, was here again.   Still.  Thanksgiving, i realize, is bigger than me.

There are thousands of cancelled flights tonight on the East Coast, stranding and straying and fraying millions of people.  There are fires burning around the country in protest of a court case in Ferguson, MO.  There are still politicians playing games and terrorists killing families and people doing all sorts of horrific things to each other.

And Thanksgiving’s coming, anyway.

That should tell us something.

What I realize tonight is that Thanksgiving is not a reward.  It’s not what we give, like a tip after a meal.  It’s not simply a measure of what we have and how fortunate we have been.

Thanksgiving is way bigger than that.

We all can say, “I am thankful because….” and tick off all the ways we are well off or better off.  All the nice things we have.  Good health and beautiful children and a job we enjoy.  All the beautiful homes and cars and things….

But what if Thanksgiving is more than that?  More than a list of things that are right?  More than a day?  More than a prayer on a Sunday?  More than a meal once a year on a Thursday?

What if Thanksgiving was who we are…

What if all we had to do was to open up, to rise up, to wise up.

What if we felt and lived and gave Thanksgiving, not because of things that go well but in spite of things that don’t?

I know we’re not perfect in this.  I’m certainly not.  I’ve got things going on.  We all do.  I’ve been bleeding since June and still since my surgery in October.  My checking account doesn’t even have five dollars in it.  I spent twelve hundred dollars fixing my car and it still makes the same flippin’ noise.  I’ve got aching hands and growing chins and stuff to do that I don’t have the time or the money to take care of.   We’ve been plunged into winter a month early and, even since my surgery three weeks ago, I’ve known four people who have been rushed to the hospital for surgeries and emergencies of their own.

And still Thanksgiving bubbles up and spills out of me and I realize that it’s not because of the day.  It’s because it’s A DAY.

Another one.

And maybe that is the whole ballgame, right there.

It is telling that Thanksgiving changes dates every year.  Maybe she hints that she cannot be contained by one.  Thanksgiving is in the dark, frozen mornings of February.  In the soft, warm, breezy evenings of June.  Thanksgiving is a Wednesday in September.  A Monday’s drive home in May.

Thanksgiving is every day.  It is not because of something particular that happened.  Something that pleased us.  A raise.  A casino win.  A good test grade.

It is because anything happened at all.

We can distract ourselves with reasons why a day is lousy.  Canceled flights and nights slept on airport floors.  Flat tires or hard days at work.  Fussy babies or screaming kids.   Apathetic spouses or rising bills.  Growing wrinkles or loud neighbors.  Whatever.  Any of it.  We all get bogged down in the muck.

But to wake up again…

To be given another day of….

Choices.

We may think we are victims of fate, slaves of the system, whatever we come up with.

We may lament how the government steals and the bosses take and this person and that doesn’t appreciate, doesn’t recognize, doesn’t give…

But we wake up each morning with choices that are ours alone.  And that makes every morning one of Thanksgiving.

Let’s make no mistake…t’s our choice to stay at a job, stay in a relationship, stay in a certain body…It’s our choice to stay or go, end or start, jump in or avoid.

Although we are good at them and maybe, even, people will buy them, our arguments and reasoning and excuses and justifications really don’t fool anyone.

In the end, we can spend our whole lives finding ways to be angry and bitter and miserable and slighted and disrespected and wronged.  If we look hard enough and with the right bias, with the right angle, with the right sneer….we will find something to reinforce what we choose to believe.

It’s up to us if we choose to believe in Thanksgiving.  If we choose to wear it and speak it and live it and breathe it.

Thanksgiving is an optimism and a faith that is stronger than any lesser evidence.  Any smaller distractions.  Any tired tendencies.  Any aged beliefs.

Let’s choose to make Thanksgiving not a moment of turkey in the afternoon.  But, rather, a morning that is full of choices.  Choices gifted to us by another day.  Any day.  Every day.

Every day of Thanksgiving.

October 12, 2014

Let’s Put Our Heads Together

Filed under: Uncategorized — karaswanson @ 10:46 am

Most of you are familiar with the common problem of sleep dysfunction after TBI. When our brains slow down and begin to trudge through the muck, we are forced to shut them down and recharge. Often they don’t have an entire day’s worth of energy and efficiency in them so many of us take naps and a lot of us find ourselves up and about during the quiet hours of the night. Many times howling at the moon or, at the very least, playing games on Facebook. ;)

On many occasions around the country when I have keynoted a speech on brain injury, I have found fellow survivors in the lobby the night before at all hours. It is a delicious secret (not any more!) that we have enjoyed story-telling and camaraderie and even the rare sing-a-long at those hotels with lobby pianos in them.

On one such night many years ago, I went to the front desk to get some change first before I joined my tribe. The survivors were all huddled and sharing something fun and funny and I was smiling, watching them from afar. A hotel employee, not realizing I was one of THEM, said, “Yeah, they put their heads together and not a whole lot happens….”

Insert curse words here.

For those of you who have followed my blogs and heard my speeches or downloadable Fork Bytes, you, no doubt, have heard me talk about my uber-strong belief that the best way to not feel disabled any longer is to do for others. The best way to not slip under the waves of having people always helping you is to help someone else. The best way to stop feeling sorry for ourselves is to go out and find others who need our help.

It’s time to put our heads together.

Over the years I’ve seen TV ads for charities which boast that, if you pledge $29.99 a month to help this group or that, they will send you a beautiful sweatshirt. A hat. A gorgeous tote bag. A lovely calendar….

I have always bristled at that. Why don’t they save the money from the flippin’ tote bags and use all the money given to actually help the cause these generous people are donating to?

Lately in the news I’ve seen a few reports where charities have been uncovered and discovered as having misused donations. Some in mind-boggling, criminal fashion. There was one that was actually putting just three cents of every dollar donated toward the cause while the foundation’s leaders lived lavish lives and laughed all the way to the bank.

When you find out how many of your dollars actually DON’T house the homeless or comfort the sick animals or shoe the children or clean the water or warm the disaster victims, you become hesitant to drop that change in the container or write that check and understandably so.

It’s time we put our heads together.

Breast Cancer Month has become, strangely and incredibly, fun. It is fun for so many because pink is fun. Pink is fun on coffee cups and ribbons on sweatshirts. Pink is fun when baseball players use pink bats and football players come out in pink shoes and pink wristbands and there are pink charity walks and charity runs and we all feel good about ourselves.

Breast Cancer Month gets a lot of play and it should. Breast cancer affects everyone because everyone knows some precious “gals.” Their own, their mom’s, their wife’s, their sister’s…

We gotta save the boobs. Gotta save the gals and all the glorious women who sport them.

But, make no mistake, breast cancer is not fun. There’s a whole reality beyond the pretty pink ribbons…

The other night was like a perfect evening with glorious food and friends watching a God-given sunset by the sparkling water. Everything came together and it was magic. It felt right. And I knew entirely that this was a great opportunity for all of us survivors and everyone who supports us to make a real difference. To step out from underneath the label of the disabled by helping someone else. To feel empowered and strong and helpful and valid and active.

It was a great opportunity to put our heads together and soar.

I’ve known Christine Benjamin for more than 25 years. She is a breast cancer survivor who has watched many of her family and friends battle, survive and, too, succumb to this terrible bastard of a disease.

Although she has dedicated a good part of her life to helping those with breast cancer, she’s got a lion’s heart. From the time I was injured and all through these twenty years now, she has shown up in countless ways and on countless days, helping and giving and encouraging and taking care of me.

She’s a plum and I respect and love her dearly.

Here’s where we come in…

We, the ones who many think no longer count. We, the ones who are mocked and giggled at from aside a hotel lobby in the middle of the night. We, the ones who have to be helped and often provided for. We, the ones with the damaged pumpkins, the soft pears…

It’s time to put our heads together and ROCK THIS LIFE!!!!!

Let’s shed that coat of the disabled and feel how wonderful it is to help others. Let’s stop fearing where our donations might end up and make them go to a responsible group that actually digs in and helps people. Let’s show solidarity to the women battling breast cancer by saying, “Hey, we’re here to help. We salute you and we support you and we want you to be here tomorrow!!!!!”

Christine is the Director of a group in New York which actually helps people. They work out of a modest space. They don’t funnel donations to lavish vacations. They don’t take your dollars and drive them away in Jaguars you help to buy.

No.

They put their heads together too.

With seventeen employees, only six working full time, they dig in and they help real people with real problems. All of their supportive services are provided by people who have faced breast and ovarian cancers and who have been specially trained to offer counsel, compassion and direction. They bring in physicians and researchers and practitioners to offer webinars for people all over the country. People who need to feel empowered by information and options during a crucial time when, so often, they lose hope. People who have had their lives turned upside down like a snow globe after some dreadful and scary-as-hell diagnosis.

People whose plights we can appreciate.

You can donate to this group and know your money is actually making a real difference. All of it. A dollar. Ten dollars. Whatever.

You aren’t going to get a tote bag. You’re not going to get a calendar. Nobody’s going to start calling you every week to give them more money.

This is one moment. One moment when the marriage of two powerful groups of people can do extraordinary things together. We have the opportunity to step outside ourselves. To be the ones helping for a change. To target a disease that affects all of us.

Better than a tote bag any day.

I know you guys. I’ve known you for twenty years now. Let’s knock this out of the park. Let’s show the women fighting breast and ovarian cancers that we over here in the pumpkin patch have fabulous powers! That we stand beside them and cheer them because we understand what it’s like to survive something that knocks our worlds sideways.

That hotel employee who thought that, when we put our heads together nothing happens????

Let’s show them what we’re capable of. Send a dollar. Send a few. Know it means something. Know it wields a power so intimate that it will actually help someone who needs your help. Our help. Together. What could be more important than that?

Christine is going to make sure that all of our donations go to something special and specific and I’ll report back in a month and tell you exactly how your donation helped. Actually helped someone real.

This is exciting for me and I hope you’ll join in. Put a note in it to Christine that says, “Kara’s friends are putting their heads together” and send it in care of:

Christine Benjamin LMSW
Breast Cancer Program Director

SHARE
1501 Broadway, Suite 704A
New York, NY 10036

http://www.sharecancersupport.org

Thank you for joining me in this. This blog reaches around the world and I know that the hearts and hands of the wounded can move mountains. Let’s move mountains. I love you guys!

August 9, 2014

Just What We Got

Filed under: Uncategorized — karaswanson @ 10:03 am

When I was first brain injured, it felt so extraordinary because I had just turned 31. It seemed awfully young to have your whole life turned upside down and it was devastating. Nobody around me had a brain injury, that I knew of. Nobody really knew much about such things.

I think a lot of us feel that way. Singled out, maybe. Cast into some sick spotlight. Sentenced cruelly.

While time certainly does NOT heal all wounds, it does gift us perspective, if we are open to the offering.

Eighteen years and some spare change later, what I realize is that age is a wise old friend with deep pockets….

I look around me and, oh my, everyone got something. Geez. People tackle their days with so many things. Lugging them. Bearing them. Incorporating them. Defeating them. Accepting them. Battling them.

I realize now that this isn’t so extraordinary, after all.

It’s just what we got.

Some people got dead children and some people got sexually-molesting fathers. Some people got screaming arthritis and others got Lupus.

Some got pinched nerves in their necks while others got bad backs. Some got fierce depression and then there are the ones with cancer.

I look over there and he’s in a wheelchair. She’s got a worker dog helping. He’s got home nursing care. She has canes for every outfit.

This guy has splintered fractures in his spine. That woman needs oxygen to get up the stairs. This one here has failing kidneys and that one is waiting for a heart transplant. The one over there has painful MS so she rarely leaves the house and that one has knees the size of football helmets.

This is just what we got.

There is maybe the argument that there are people walking around with nothing (those lucky rotten bastards!!!! LOL)

But that is not the case. Everyone has something. Coming or going.

This is just what we got.

Those seemingly perfect people with all the good looks and all the full pockets and all the fancy houses and all the gorgeous bodies…

Some are hiding early symptoms of Alzheimer’s while some have hidden depression or eating disorders or drinking struggles for years.

Some are about to get into their cars and drive into crashes and off roads and back into their small children on the driveway.

Some will board planes that crash and others will hide bruises from abusive spouses. Some will spend short lives waging wars and others will live sixty years incarcerated for a murder they didn’t commit.

This is just what we got.

Let’s see the world and all her beauty, for those whose eyes have gone dim. Let’s hear the world and her music, for those whose ears no longer receive sound. Let’s walk for those whose legs are paralyzed, dance for those whose balance and dizziness cannot tolerate movement. Let’s look forward for those who can only manage to go back. Let’s shine warm, wonderful light for those screaming silently in darkness.

This is what we got. And, like everyone on the planet before us and still to come, it will kick up its heels and it will make some things more challenging and it will change our lives in ways we didn’t invite.

But….

Like those who run on prosthetic legs and those who dance from wheelchairs….Like those who emerge from abusive childhoods to foster loving families…Like those who are homeless but still manage to get college degrees…Like those who, despite WHAT THEY GOT, get up, get out and refuse to be conquered..

Let’s take what we got and go enjoy the day. Let’s make bright the world around us. Let’s, with our lousy memories, give our loved ones someone so warm and generous that they won’t soon forget.

Let’s take what we got and go and rock this world. Our world.

The one we got.

July 14, 2014

Let’s Fix Forward

Filed under: Uncategorized — karaswanson @ 8:04 pm

So many discussions on brain injury are centered around what has already happened. Well, that makes sense. We talk about and write about and blog about and even bitch about the damage we’ve endured from injuries suffered to our brains.

When I go out to speak, in many of my blogs, and in my Fork Bytes audio downloads, my focus is increasingly about moving on and heading forward.

A lot of that is just the natural commentary of my life. It’s been 18 years now since I was brain injured and a lot has happened since then.

I have moved on and thank God for that. I’m in a super place now. I’ve created a second life after injury that accommodates the symptoms that never healed and I’ve found ways to be successful in many jobs and activities. I am in a great relationship, I have great friends and family. I’m truly in a terrific place.

One of the inspirations for any of us to emerge from a brain-injury-consumed life was highlighted today in the news and I couldn’t wait to share it.

My brother is an eye doctor and I’m so proud as punch of him. Over the years, he has developed a keen expertise in disease detection. Not just in the eye but using the eye as, literally, a window to our well-being.

Today, all over the news, reports came out that there is exciting confidence in an eye doctor’s ability to perform routine eye exams which can detect brain plaques, an early marker of Alzheimer’s disease.

This is exciting news because this early detection could come YEARS before any symptoms show up, allowing a patient to get further testing and enjoy earlier medications which could prolong their cognitive health.

In recent years there’s been a lot of impressive research linking brain injury to a higher incidence of Alzheimer’s and dementia.

Now, I happen to think that sucks.

For those of us with brain injuries, we should automatically be disqualified from any future damage or disease to our poor peanuts. I mean, geez, really? That’s a bit of piling on, don’t ya think?

One of my dearest friends (Happy Birthday, Kim!) turned 50 the other day and her birthday always makes mine six months away. I’ll be turning fifty six months from now and I’m already acutely aware of the changes that aging is taunting me with.

I feel an increasing urgency in the belief that we really need to get our engines all firing as hot and high as we can and soon. If there is a higher incidence of cognitive problems for those who have suffered previous head trauma, then we all have to realize that the battle is not yet over.

It might simply be the calm eye of the storm.

There is an exciting new research result out of Finland that finally proves right all the blah blah blah our doctors have been droning on and on about for years.

Ha.

Two groups of aging people were watched for several years. The one group followed a healthy nutrition plan, increased their physical activity, improved their cardiovascular health, regularly socialized and engaged in brain games.

The results were encouraging and exciting. They proved that, indeed, we CAN DO SOMETHING to protect our brains and keep more of our futures bright.

It’s conflicting news for the brain injured who, by necessity, often rely on routine and dependable activities to help create ability. What I’m suggesting now is that we need to do more. Our of our norm. Out of our element. Out of the box.

We need to create safe environments which encourage and nurture new activities and talents. We need to learn again and still and constantly. We need to challenge ourselves, to surprise ourselves, to walk down the halls of our minds and blow open those doors and flip on those light switches.

All of us.

Yes, we may be war-weary warriors but I find it hard to imagine a fight more important to stand up for. Many of us have spent years cursing our brains for what they forget, for what they mess up, for what they fail to do.

I submit it’s time to raise up those precious peanuts of ours. To celebrate them and cherish them and feed them. Arm them.

It’s time to get busy learning new things. Learn a new language and music is a language itself so pick up that tarnished trombone in the basement, go buy a harmonica, find an old banjo at a garage sale.

And let’s rock!

We can do something positive for our brains. Something that can help us, not only rise out of the past that often shackles us, but something that propels us into a positive future that we can actually affect.

Let’s learn how to polka. Let’s watch movies with subtitles. Let’s eat brain foods and improve our cardiovascular health. Let’s put ourselves through brain happy boot camp and come out the other side ready to wage war on Alzheimer’s and dementia.

I want to be writing this blog when I’m six months from turning eighty. Will you be able to read it?

June 14, 2014

Damaged Brains: In The End, It All Ties In With Fathers’ Day

Filed under: Uncategorized — karaswanson @ 1:06 pm

We tend to think of Traumatic Brain Injury as my injury…as so many others…

The insult, assault and damage left behind after a car crash, a beating, a shaken baby, and any of the thousands of ways people’s lives have been so catastrophically changed when their mighty, precious, spectacular brains are hurt.

But I’ve been thinking about more subtle brain damage…

In the wake of statistics this past week revealing that, since the Sandy Hook school shooting, the United States has averaged roughly one school shooting a week.  A week?????  Could this be possibly true?

Stops you in your tracks.

The other night I went to watch my nephew play ball.  He’s at an age now where the kids pitch and there are more walks than hits and probably more runs due to errant throws.  But you can see, each summer when they return, that they stand a little taller.  Their throws are a little stronger.  Their swings are more purposeful.  They are getting it.  They are ball players. 

As I watched the game, my niece was off with her friends.  She returned from time to time, perfect in her tie-dyed shirt and dirt-covered shorts. They threw baseballs and kicked soccer balls and giggled and ran.

The night was as perfect as can be.  What we knew and what they still know.  And should.

Innocence.

Safe innocence.

As I’m sure many of you have, I’ve wondered often how, in recent years, gun violence has infiltrated our society with alarming results.  It feels very real, very scary and very close.

This topic makes its way into a blog about brain damage because brain damage makes us not think the same.  Not think as we did.  Not think as intended.

I believe that brains working well and in a healthy way do not conjure up shooting as an answer to any of the problems we are seeing on the news each night:  a failed love affair, a lost job, a lousy school experience, an item wanted… 

There’s a lot of people out there not thinking right and I wonder why their brains are damaged.

It’s too easy to blame.  We blame a different society.  We blame computer games and violence on TV.  We blame gun rights’ activists.  We blame little leagues where every kid gets a trophy.  We blame social media.

We do a lot of blaming.

They do a lot of aiming.

I watched television and movie characters shoot guns as a kid.  I was made fun of though, thankfully, not often.  I was molested for years and the most of the cutest boys never looked my way…

But it never occurred to me to shoot any of them and, if you put fifty guns in my house right now, I would simply ask you to remove them.  I don’t want any part of them.  They scare the bejesus out of me.

The frequency of gun violence is so alarming and so disturbing because, it seems, there isn’t a code anymore.  Nobody plays by logical rules.  There used to be certain places for guns and none of them were in schools, on the playground, in students’ backpacks, in fights between supposedly loving people…

Parents usually make their way to me and seek me out after something has changed.  Something often dramatic that has left symptoms and new tendencies.

I submit that maybe it’s time we all start thinking that something has changed in all of our lives.  In all of their brains.

You would look for symptoms if your child struck their head after a fall or in a game or after a car accident.  Maybe it’s time now to take one step further and see if their brains have been damaged by desperation, misguided thinking, hopelessness, naivite, or impulsivity.

After all of these mass shootings, people go back and find clues and hints and changed behaviors that now make sense.  Moments they didn’t realize were symptoms.  Subtle actions they didn’t realize were screaming red flags.

We all know someone trying to remake their own childhood through their kids.  They dress like their teenage daughter.  They hang out with teenagers or turn their affections towards them.  They get way too involved in their kids’ little league game to the point where it’s no longer the kid’s experience-it’s the parent’s.  There’s a lot of examples…

I think we need to stop living our childhoods and start living theirs.

Our childhoods don’t look much like that of the kids of today and it’s up to us to stop just lamenting, stop simply blaming, and get busy saving these kids.

Saving them from brain damage.

There’s no helmet against desperation.  It’s time we stop teaching them simply how it used to be and start learning from them how it really is.  Their symptoms are there.  They are.  A kid who loads a weapon and takes it to a public place and starts murdering innocent people didn’t just arrive at that point the second they started pulling the trigger.

It’s Fathers’ Day weekend and we are safe in the simple, comfortable traditions of neckties and barbeques.

But there are a lot of people out there who aren’t going to celebrate being a dad or having a dad when some damaged person went and shot their loved one to death in a mind-boggling surprise.

Let’s get small.  Let’s stop blaming all these big things and get really small around us.  There’s no use in teaching them how to live in a world that no longer exists. Let’s use this great big Internet to research behavioral changes and desperation and hopelessness.  Let’s learn from these young people about guns.  Not our understanding.  Not our interpretation.  Theirs!!!  Let’s talk with them a thousand times and more about real life and how it is different than what they see in games and on TV.  Not once.  Not assuming they know. 

Like the thousands of brain injury survivors who have come my way and told their story, let’s stop thinking it can’t happen to me.  To us.  In our neighborhood.  In our schools.  It’s not enough just to ban our kids from anything.   It doesn’t matter if you refuse to have weapons in your house if you don’t realize your kid’s best friend has access to a case full of rifles.

We weren’t told once as little kids that we need to look first before crossing the street.  It was pounded into our heads.  Over and over.

Let’s not cheat any of these kids by continuing to think, “My kid wouldn’t do that.”  They need more from us.  They need us to step up our game and get them to adulthood.

Let’s save them.  Let’s save them for all these dads out there who want a bad tie and a hamburger on the grill this weekend.

Let’s identify symptoms of brain damage that doesn’t come only after a header in a soccer game.  Let’s treat this changing world, this changing society, the same way we’d look at a blow to the head.

People thinking clearly, in a loving, hopeful, healthy way, do NOT load guns and blow people away.  Let’s treat the brain damage spreading silently before it’s too late.

My brother deserves a great Father’s Day every year of his life.  So do all of the fabulous dads out there.  A chance, too, to honor and remember those, like mine, who passed down great tools to successfully live by before they had to go.

Let’s do more than blame.  Let’s do more than just hope it doesn’t happen or pray it doesn’t happen.  Let’s do more than just curse the Internet and lifelike games.

Let’s not look back after it’s already too late.  Let’s look forward before it is.

 

 

 

May 26, 2014

I Guess There’s a Little More To It Than That…

Filed under: Uncategorized — karaswanson @ 10:28 am

Those who have read my blog or maybe heard me speak have likely heard me say (and probably more than once-ha!) that, if you don’t want to live a brain injury-consumed life, then you cannot live a life that is consumed with brain injury.

Though I still love my mantra and I still stick to it, I might have to tweak it just a little.

I believe in getting on with things.  Getting up again.  Getting going.  I know that there are some losses that will forever leave chunks of our hearts and souls missing but I have accepted that these enormous and painful losses are the payments we make for investing in a long life.  Life was never supposed to be without tears and loss and pain.  That is the truth.

I believe that traumatic brain injury is a rotten bastard whose “left behinds” can be as glaring as a coma and as subtle as simply the inability to figure out if someone is kidding or not.   Everything in between.

And so, when I’ve said so many times that in order NOT to live a brain injury-consumed life, you simply have to live a life not consumed with brain injury, it has always been with the understanding that we still have the brain injury.

Shitty, I know.

What is important here is that successful recovery from TBI is not the same as successful hiding of it or denying it. 

Someone once said (and I love this quote though I might butcher it), “The facts don’t change, even if we refuse to accept the facts.”

There are steps to take and they will wait, thank you very much.  They are patient and they have all the time in the world.  At least all the time in our lives.  They will bide their time and wait until we choose to deal with them.

It’s like baking a cake.  You can’t just throw all the ingredients into the pan and toss it into the oven. 

They have to be mixed together.  You have to take the wrapper off the butter.  You have to measure the water.

Steps….

Before we fashion a fabulous shining “will be,” we have to deal with the “what was” and “what is.”  No way around it.

In order to live a life that is NOT consumed with TBI, we have to do something better than to simply deny it or hide it, even from ourselves.  We have to measure its power, stop feeding it and find a place for it to be integrated into the lives we want.

I’ve often said that brain injury is a distinct event.  When you are hurt, you are hurt.  The damage is done and, in most cases, it doesn’t keep on damaging.  Not by itself.

I’m a huge believer in giving the injury its due.  Respecting it and getting a real handle on the damage.  Learning every nuance.  Learning ourselves after its tornado.

But the secret to success is NOT going forward without the injury.   It’s going forward with it.  Tucked in a place that we create.  Comfortable in a place that we construct.  That WE construct.

And then we get on with our lives.

The danger in proceeding with denial and hiding is that we end up suffering results and judgements for those results that we don’t need to and shouldn’t have to endure.

Most of the people I hear from are frustrated and depressed because they are still trying to keep up the way they used to.  They haven’t folded that injury into their lives; they have refused it and still it comes.

Imbalance, in any facet of any life, has symptoms.  You fall in love and you drop your friends and you only want to be with your new love for all those months and then, if it doesn’t work out, you have lost that support system.  You have dropped those people who might have been able to assist in keeping things from getting too consumed, too one-sided, too tangled.

Too much of most things leaves symptoms.  You work too much and the symptoms are distant, disconnected or absent relationships with a partner, friends or kids. Too much drinking and the symptoms end up being maybe you find yourself calling in sick for work or suffering a hangover too many mornings, even during the week.

Too much bad eating and you end up with symptoms of a big belly and maybe high cholesterol or blood pressure numbers.

Too much gambling and maybe you can’t make your bills anymore or you lose your house.

The symptoms of neglecting our TBIs are often similar for most of us:  we can’t process any more, we can’t make decisions, we fog out, we become unstable, we can’t control our emotions, our words get lost or stuck…

Many of us look at these and curse this stupid rotten lousy &^%$#@! injury.  

I see them as clues.  As reminders.  As friends.

Friends????!!!!!!

Symptoms of TBI, as we restart our lives, are simply reminders when we get a little off-track.  They are helpful red flags that tell us we are too tired or have stayed too long in a crowd or we need to get to a quiet place and rest.

We don’t have to live a life consumed with brain injury if we create a life that doesn’t require it to hammer us with reminders.

If we carefully craft our lives after injury, we can live very happy, fulfilling years that don’t allow the injury so much power that it can keep us from the things we desire. 

The beginning few months of this year, I worked three jobs while helping to get my parents’ house ready to sell.  That doesn’t mean I’m all better.  That doesn’t mean I’m cured. 

It means I’ve become damned-good at meticulously integrating my injury into my life so I can be successful.

I chose jobs that I could do in small shifts.  I had one job that I could do from the quiet of my home in my pajamas.  I arranged my schedule so that I could come home between shifts and enjoy some recharging in the quiet of my home.  I chose jobs that either didn’t require a lot of thinking and on-spot changes or where I could so carefully prepare and install fallback plans that fatigue rarely kicked up its heels.

I didn’t deny the injury.  I invited it.  But I invited it on my terms.  At certain times and places.  Safe ones.  I gave it its due without giving it too much power.  I installed down times and naps and quiet places and boundaries so that I could succeed in spite of it.

You can do this.

As we drove out of our childhood home for the last time a few weeks ago, I sobbed uncontrollably.  It was like a death to me.  I still grieve.

They are already changing the doors and ripping out the kitchen.  In my old neighborhood they are tearing down a local hospital.  Favorite characters on long-loved TV shows are leaving and getting written out.  Favorite ball players are retiring.

Things are changing and, as is in every facet of life, some of those changes are not welcome and are not celebrated because we didn’t choose them.

But we go on.  We go on anyway.  We go on without whatever was taken.  We go on with less ability, with less money, without the spouse, without the security, without the familiarity.

We go on.  We heal some.  We replace what we can.

It’s up to us whether or not we go on successfully.  Happily.  With something to cheer.  Something to appreciate.  Something to giggle over.  Something to achieve.

The injury doesn’t decide that.  We do.

April 22, 2014

Dare to Imagine

Filed under: Uncategorized — karaswanson @ 7:50 am

I see video replay of the families and loved ones of the missing Malaysian triple-seven, screaming in anguish and frustration after more than a month with no debris field and no tangible return on the tireless efforts to find that plane. 

I have watched coverage of the sunken South Korean Ferry and the seemingly endless parade of the dead, carried on stretchers from the grave of hundreds.  Information there is posted on a white board about each victim for the families to identify:  braces, nail polish, birth marks, clothing…

I think of the families in Washington State who suffered that massive mudslide a month ago.  My thoughts turn to the loved ones of the lost souls on Mt. Everest this week….

And I don’t know how there is so much hatred in this world of ours.  So many lines drawn in the sand.  So many borders.  So many fences….

If you dare to imagine the plight of these people, all around the globe, it is another invitation to bring us closer. To bond over inarguable circumstance. It doesn’t matter what color they are.  What language they speak.  What political party they belong to.

When I imagine a dead child who was swept away by a mudslide….a young Sherpa climber buried by a sheet of ice five stories high…a South Korean high school student slowly descending into the dark and cold sea, any person in the frantic last moments of a plane crash…

It makes me weep to imagine.

We needed the Boston Marathon yesterday.  A year after that horrific bombing which sent shockwaves felt across an entire planet, we needed that marathon to run and run they did. 

A million people showed up to defy darkness.  To cheer and clap and prod on, not only the runners, but the very spirit of light.  Of recovery.  Of good.

There’s not a one of the million-plus gathered in Boston who didn’t take a few moments to fear and wonder and look around and take a deep breath and consider and pray.

But they came anyway.  They beat back their fears and they demanded the light and the light came.

It gives me chills to imagine. 

Last week a student was found possessing a firearm and six bullets at the high school where I work and where I went to school.  My school.  My friends.  My co-workers.  My community. 

That incident stole a little of the innocence I have always enjoyed there.  That young man took a bit of the carefree fun I enjoy when I announce sporting events.  He brought fear to school.  He brought reality to my school which, before this, had enjoyed the naïve denial of the untouched. The fortunate others.
What I’ve realized is that we don’t have to move unchanged from one horrific headline to the next and the new. To move on unchanged is to turn away the opportunity to bridge distance and make smaller a world that is so gloomy with division.
When we dare to imagine what anyone feels, even that poor soul on the side of the road with the flat tire in 19 degree weather, we plant the seeds of a compassion that emerges from the rocky soil of contempt. Of hatred and prejudice and bullying and meanness. In a world so desperate for the blooming of new hope and warmth, we need only look at each day’s headlines to see how urgent this need.
Let’s take a few moments from our crazy, busy days to feel that dark cold water in our minds. To imagine how enormous a sheet of ice five stories high is. Let’s reserve just a bit of our time to appreciate a mudslide that rushes into a home and fills it five feet high. Let’s sit with the visual of that teenager last week, sitting in a classroom with kids like your own. A gun and bullets in his backpack…
If that isn’t a bell toll begging for change then I am at a loss for what could be. Time and again we have watched with distanced amazement at what goes on in the chaotic world around us. Let’s bring it home in our minds, before it comes home and shows up on our doorstep. Let’s imagine what has been so that we might change what will be.
Our lives right now, our time here…Our period…This is ours. This is our place, together. Whatever and whomever, the good and the bad, we will, together, move into the history books. One at a time, our contributions, whatever they were, will go silent.
Let’s give ‘em light. Let’s rattle the cages of the good. Let’s imagine the cold darkness so that we are inspired and compelled to the warm and the right.
Let’s outnumber the ones who make this world such a scary place that a teenager is sitting in third hour with a gun and bullets in his backpack.
No one else can do it. We are all we have.

March 16, 2014

Harder Going Out

Filed under: Uncategorized — karaswanson @ 9:15 am

For over a year now, my brothers and I have been slowly clearing our childhood homestead, readying it for sale.  I had spent my time there largely carrying out the myriad “loose” items that had collected over the years.  Easy to bag and box and carry and drag.  My Mom’s scrapbooks from when she was a little girl.  My Dad’s artwork.  Eight thousand rubber bands and plastic margarine containers my Mom kept.  Every holiday card they ever received.  A thousand odds and ends of dishes and glasses and silverware and pots and pans…

There were the file cabinet drawers filled with taxes and cancelled checks from the 70s.  Stocks of china and books and things people left when they went to college, moved out, moved back in, left for different states, different lives.  Left for….Heaven.

Now that we are down to near-empty rooms, there are items that, when moved in, had no intention of ever leaving.  An entertainment center that even the movers told me that first day, “Tell us where you want it because it’s never moving.”

Well, it’s moving.

My brothers dismantled it and dragged it up the stairs.  That heavy-as-hell workbench and that storage bin that I never could of imagined where we got it or how it even fit downstairs for fifty years….

It’s all harder going out.

Like entertainment centers and steel file cabinets and seemingly unmovable work benches, we move thoughts into our minds at an earlier time.  When we are younger, when we are excited and hopeful, perhaps when we are naïve.

We take in “stuff” over the years….Things we’ve heard and things we’ve learned and things we’ve rationalized and stories we’ve told ourselves.  We pile in the rumors and the family stories and the beliefs and attitudes.  Most of the time we don’t research them to find out whether they are true or valid or need to change.  We pile them in and soon we just vacuum around them.

It’s harder going out.

Collectively, as a Society, as a human race, we are so slow to change our beliefs on so many things.  What skin color means and what a woman deserves to make and what a family should look like and what a government should do….

More close to home, we set in stone what we mean, ourselves.  What roles we play and where we shine and puff out our chests.  We find comfort in the piles and bags and boxes filled with stuff we will never again use because they reflect a comfort time.  They validate a life’s work, they prove we were loved or able or popular or important or successful.

It’s harder going out.

Each month I sit down at my kitchen table and I write out bills and I log how much they were on a sheet I brilliantly titled the Bill Log.  Genius.

I was looking at the amount totals for gas, electricity and water and I was amazed to find they are virtually the same.  Every month.

Within a dollar, within pennies, I am such a ridiculous creature of habit that there is virtually no change in my utility usage over an entire year.

As simple as it sounds, if I want to change my utility bills, I have to change how I live.   I have to take a shorter shower, wash clothes a couple of times fewer each month, use paper plates or cups….Whatever.   In order to change those numbers, I have to change the behavior driving them.

One of the hardest parts of recovering from brain injury is the realization that, by and large, once that brain is struck and damaged, things are immediately changed.

We might not know it yet.  We might be preoccupied with hospital stays and therapies and surrounded by medical bills and overturned realities….

But we have already changed.

The reason my brothers are dismantling that entertainment center and dragging out my parents’ bedroom set and carrying up that old work bench is because we are different now.  Not everything fits anymore.  We don’t need some of those things.

I moved to a condo because I have just spent more than half my life cutting the lawn on a double lot that has fifteen trees to trim and leaves to rake and lines to edge and bushes to shape.

I’m not a young kid anymore and I’m not heading in that direction.

I have changed.

And so have you.

There are beliefs and traditions and practices and roles and comforts and routines and yes, furniture, that no longer fit any more.  Somewhere along the way we came to think of that as a bad thing.  As a failure or a problem or a shame. 

In reality, we are meant to change and evolve and clean out and give away and drag up from the basement.

Perhaps we were duped by growing up in a time when everyone worked at the same job for forty years and left with a gold watch, a pension and a chicken buffet dinner.  We slapped bondo on our cars and drove them for twenty years.  We saved plastic containers and wire bread ties and we actually sewed the holes in our socks.

Sometimes it’s more effort to stay the same.  To keep dusting and vacuuming around that work bench or that entertainment center or that treadmill that no longer fits.

I made a Time Capsule for each of my parent’s things.  Stuff that was sooo them.  Special things.

I threw out my Mom’s garter belts and her bathing cap from 1962.

Suffering a brain injury or any major life change is like moving out of a house.  If you haven’t been clearing it and maintaining it over the years, it’s harder going out.  There’s just so much clutter.

I’m in a beautiful condo now.  It is clean and well-repaired and it reflects the styles and personality and place that I’m at now.  I don’t need that entertainment center any longer.

Beyond the obvious setbacks and devastating realities of significant head injury or life change lies the whisper that beckons.

It sneaks in and makes the curtains dance.  It smells of freshly-cut lawn after a long winter.

It is a fresh start.  It is change.  It is Spring. 

Nobody can take or belittle or make frivolous the remarkable changes that a brain injury brings.  You have suffered a personal winter for the ages.

But it’s unnatural to wear our parkas and our boots when the storm breaks.  When the skies clear.  When the sun warms.

You deserve Spring.  You deserve to start anew without all the thoughts and roles and practices and routines and work benches of a life before.

Now I sit in my new condo in the quiet mornings when the sun streaks through my front window.  I smile as it reflects through the beautiful green glass on a copper lantern that was my parents’.  I smile at how wonderful the few pieces of furniture I kept compliment my paint and carpeting choices.

And I laugh.  And I hope.  And I dream.

Again.

 

February 9, 2014

Measuring Cups, Moguls, Apples and Oranges

Filed under: Uncategorized — karaswanson @ 11:56 am

I can remember sitting in class in high school, seemingly a lifetime ago, and hearing my teacher talk about how we needed to learn the Metric System because our country was planning on switching over and naming the Metric System our designated, official system of measure.  It was a big deal back then, I recall, with many in an uproar that we would change, so significantly, the way we measure.

I watched the Olympics last night and saw American Hannah Kearney take the bronze in what was, for her, a cutting disappointment after her gold medal four years ago.

I saw that little flub they spoke of.  I saw her knees come apart as the hills gauged her and stole her dream finish in that split-second.

To the world, we marveled at her ability.  Wow!  To tackle those moguls and to flip and flip backwards, to land, to maneuver.

But, for her, it was a performance that disappointed, didn’t measure up, brought her to tears.

It’s funny what we remember about things…

I can vividly recall being in 9th grade swim class, standing there self-consciously with my arms crossed, trying to cover my belly.

I weighed 119 pounds at the time.  I could run a mile in under 7 minutes and I could bench-press 150 pounds.  I had teardrop muscles for thighs and I was all taught and hard and the strongest I had ever been.

There wasn’t a belly to be ashamed of.

Too often we grab measuring spoons and cups that simply no longer serve us.  No longer are valid.  No longer matter.

We turn a deaf ear to the overwhelming roar of the else, the everyone else.  We are so determined to find where we don’t measure up.  Where we disappoint.

Our ears are too big, our boobs are too small, our bellies too big, our penises too small, our chins too big, our bank accounts too small, our this and our that.  Always seemingly too….something.

It seems to me that we needn’t worry so much about what we measure with, which system we choose, but, rather, the things we measure them against. 

And maybe the everyone else should have a voice, a listen…

I hope one day that Hanna Kearney realizes what an outstanding, top-tier Olympic athlete she has been.  Wow, what an accomplishment.  To toe the podium in two consecutive Olympics.  That is truly a remarkable feat.

And the rest of us?

Do you think I should feel shame that my body is no longer as trim and muscled as it was when I was 15?  Do you think that we should waste one more moment lamenting how we no longer are as good as we once were?

It’s time to re-assess what we are comparing.

Too many of us after brain injury spend months, years, even the rest of our lives, comparing our abilities to those without brain injury,  even (and most nonsensically) ourselves before we were hurt.

We all do it.  We’ve all done it. 

And we’re all simply mistaken.

We have to allow ourselves to be right here, today.  To be who we are and make something great of that.  To know that we aren’t supposed to be younger or older or this or that.  That we are supposed to live today.  With all of the abilities, opportunities and choices available to us right now.  Right here.  This moment.

It doesn’t matter what we were twenty years ago, in as much as we compare today.  It doesn’t matter what we made, what we weighed, how we had this or did that.  All that matters is what we have now and how we bend that to sculpt a tomorrow we want.

Let’s not compare our skiing to a two-time medal winner in the Olympics.  Let’s not compare things that are not fair, not logical.

They are apples and oranges and apples and oranges are for eating, for treating, for painting of and for nourishing us.

Let’s nourish us.

Let’s take every day and see how light it travels without all of yesterday’s expectations and disappointments.  Let’s just take this day and see what we make of it.  Maybe we will get thinner today.  Maybe we will get stronger today. Maybe we will be sober again today.

But maybe we will get fatter today.  And maybe our health will deteriorate today.  And maybe we will fall off the wagon.

And then let’s try again tomorrow.

We don’t have to carry everything with us.  We don’t have to shoulder everything, a lifetime of how we failed to measure up.

Why don’t we just take today and enjoy the heck out of it.  No hurries, no worries. See if we can’t take the opportunities and abilities at our disposal and do something that makes us feel good.  Feel valid.  Feel happy.  Feel loved.  Feel accomplished.

We aren’t supposed to be what we were back then.  Not in high school.  Not in college.  Not before our injuries. 

We are what we are supposed to be right now.  The trick is to make something delicious when maybe we don’t have all the ingredients we thought we had or forgot to pick up or finished the rest of last time we cooked.

Let’s make something wonderful, anyhow.  Just today.  The best of today.  Let’s not worry about how it was before or how it might have been.  Let’s not even fuss about how it might be the next time.  Let’s just enjoy how we make it today.  Let’s feel light in the knowing that we are exactly where we are supposed to be and we are just plain flippin’ fabulous here.

In the now.  In today.  In this glorious moment.

 

 

January 11, 2014

If the Whooping Crane Can….

Filed under: Uncategorized — karaswanson @ 8:52 pm

 

Not even a decade ago, the Whooping Crane’s numbers had dwindled to around fifty.  They were on the verge of extinction and in very real danger.

Some fabulous people got together.  They brought a compassion and a determination and a willingness to think outside the box that we can all applaud.

They designed and created a fake “Mama Crane” that would guide and direct orphaned young cranes out of Wisconsin before the punishing winter and get them safely to Florida before they died.  From the time they were in the egg, they were treated to the sound of the engine from Fake Mama Crane and were literally taught to fly by following these awesome people dressed all in white, running down a runway, showing them how.

When they were ready, Fake Mama Crane flew and so did the young cranes.  Fake Mama guided them all the way safely to Florida, just as a real Mama Crane would have.  Instinct would show them the way back to Wisconsin’s wet lands after winter.

I marvel at the dedication and pure determination to save these beautiful birds.  I giggle at the thought of them dressing as cranes and running, themselves, down a runway and leaping into the air, teaching these little crane babies to fly.  Imagine the sight!!!!  :)  Big smiles here.

When it comes to any of us learning to fly again after devastation in our lives, I don’t know if I’m more inspired by the fake cranes imagining a new way to lead these orphans to safety or the young cranes themselves, running, running, running and finally trusting those sweet wings.

After traumatic brain injury demolishes what we had created as our normal, our chosen…we have to find a way….

Find a way and make our way to that runway again.  We have to trust people determined to assist us in staving off our extinction.  There are people out there, many cleverly disguised, who have that one simple word, that unexpected hug, that chance given, that door opened…who will help us change our lives and steady those wings.

If we let them.

Make no mistake, the enormity of TBI in a life threatens to extinguish a beautiful flame and it’s up to us to keep feeding it, to keep it burning.  

Nobody could take that last step for those young orphaned cranes.  Nobody could force them or do it for them. 

They had to lift off.

And so do we.

Today the Whooping Crane’s numbers have grown over four hundred.  Slowly but surely these magnificent birds and the people determined to love and to save them have created a miracle of hope.  A beautiful story of inching so dangerously close to history and then soaring again.

Choose to soar.  Run down that runway.  Ten times.  A hundred times.  A thousand….

Keep leaping into the air.  Towards the sky.  Towards the sun.  Keep trusting that the next dream, the next step, the next attempt, the next path, the next morning….will be YOURS!!!!

Happy New Year, all of you.  Can’t wait to see you soar!!!!

Have you checked out my new site yet?  Stop by, take a look and grab a BYTE!    http://karaswansonsforkbytes.com/

Next Page »

The Rubric Theme. Create a free website or blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.

Join 101 other followers