Kara Swanson's Brain Injury Blog

April 23, 2009

Ten Toes Up

For many of the thirteen years since I was injured, I have slept in 3 and 4 hour shifts, often 7 pm to 10pm and 6am to 9am.  I can’t tell you how many times people have suggested to me, exasperated, “Just don’t take that nap!” 

I wish it were that simple.

When I worked in catering, there was one stretch of just shy of 8 months when I had one day off and averaged more than 90 hours a week.  Not one day off a week.  One day off in almost nine months.

Now I get to four o’clock in the afternoon and I’m talking nonsense.

Ten toes up.

It’s hard for people who are not brain injured to understand how we can possibly be so tired when, for many of us, we don’t keep up nearly the pace we did before our injuries.  Late day cogntive fatigue is so commonplace for so many of us.  “Normal” people are working two jobs and raising kids and running here and racing there. They look at us about dumbfounded.

I think I’m typical as a brain injury survivor in that I have a hard time now processing multiple “chunks” of information.  Think of your computer and how bogged down and slow it gets when you’re running too many applications and trying to open too many windows at one time.  It grinds down.  It gets stuck.  It stops “thinking.” 

So do we.

Because of our unique challenges, most of us are juggling cognitive processes that, for the well, are executed without a conscious thought.  At the same time, our ability to accomplish just that has been diminished, making our “candles burn at both ends.”   The light goes out too soon most days.

In my case, because of my balance problems, I’m constantly measuring and judging the landscape.  I’m calculating how to balance myself and how to move and how to react in order to keep myself safe and upright.  “Normal” people aren’t even thinking about how they’re walking or if they’re walking from carpet to tile or on the edge of grass or up a stair or down a hill.  They just do it.

At the same time, maybe I’m having a conversation.  Because I don’t process information as quickly, I’m focusing harder.  I’m repeating information in my head as it’s received in order to recall it later.  I’m trying to remember what the heck the first part of the conversation was about because, often by the end of it, I’ve lost the beginning of it.

Additionally, one of my problems is that I have a tendency to interrupt and change the subject.  So I’m also focusing on the conversation and reminding myself to stay in the moment and don’t interrupt and to wait my turn to insert a thought that is screaming to be shared.

It doesn’t take long before I, we, use up our quota of cogntive reserve and soon we have no choice.  Ten toes up.

Our afternoon naps are not so much a failure to structure our days more beneficially.  But rather, they become strategic compensatory techniques for us to utilize in order to make better use of the time we’re awake.  We’re simply recharging our batteries.

My friends and family know, by now, the symptoms I display when I am running low on cognitive fuel.  They know, too, that if I am engaged in activities which drain my stores more quickly, it’s not going to be long before I’m going to need them to take over the decision making and keep me safe.

A concert, a ball game, a party, a crowded dancefloor with strobe lights…all these and more cram chunks of information into a processor that, by the end of the day, is working more like a pocket calculator than a streamlined computer.  If there’s too much stimuli, too much noise, too many conversations, too many choices, too many steps I have to calculate, there simply isn’t much left.  I won’t have the ability to execute functions as simple as trying to calculate a tip at the end of a meal or as serious as being able to operate a vehicle safely.

Ten toes up.

TBI survivors have, over the years, lamented how embarrassed they are at having to take naps.  They have been admonished and ridiculed for this, like it’s some kind of character flaw. 

I look at sleep differently.  I consider it medicine.  A cane.  A wheelchair.  A dayplanner.  A post it note.  A whiteboard.

Taking a nap in order to recharge cogntive batteries is a necessary tool.  A compensatory technique that enables us to be the efficient, successful people we can be when we’re firing on all cylinders.  Implementing these strategic rest periods is a huge part of successful recovery and part of redesigning new lives that fit the unique features of our injuries.  Naps aren’t something to be cured.  They are something to be cheered.  They are a smart, safe, inexpensive remedy to a common problem.  And there are few side effects besides missing some favorite TV shows.

We don’t chastise babies or the elderly for having to take naps.  But, for some strange reason, we, as a society, have come to equate the need for more sleep with laziness or weakness.

How many times have you heard people proudly boast, “I only need four hours of sleep each night?”  We look at these people like they are stronger or more determined than those other lazy sots sleeping six hours a night.

My sleep patterns were damaged in my injury.  Not only do I often sleep in two sets of naps, my brain kicks me out whenever I reach a level of deep sleep.  This means that I do not benefit like most from the kind of essential sleep which restores, heals and revives.

I’ve been advised that my body is aging more quickly and fixes itself more slowly.  I am not able to lose weight as easily (even if I wasn’t addicted to chocolate).  It’s like never shutting your computer down.  Eventually it simply doesn’t work as well.

We need to promote sleep.  Cheer it.  Value it.  In a society where we are struggling to make ends meet and working two jobs or staying up stressing because we’ve lost them, we need to change our thinking about what sleep means.  It no longer means that, to deprive ourselves of sleep means we are smarter, more driven and more accomplished.  It’s time we learn that, it’s only IF we sleep that we can continue to be smart, to keep driving and to remain accomplished. 

Ten toes up.  Sweet dreams.

April 16, 2009

“One Damned Day”

When it comes to traumatic brain injury, I have wept shamelessly for all of us who know intimately this great scrambler of sense.   The ones thumping down to the ground on the teeter tauter of life when normal jumped off laughing….

Perhaps, if it even can, it hurts more to me when I see teenagers and soldiers suffer TBI.   Teenagers, I think, because it is during those years when everyone looks like each other.  You walk into any high school and you see every teen girl with the same haircut wearing the same outfits with the same brand label.   They talk the same and sound the same and it’s hard as hell to be different at that age.   Especially when kids can be so cruel.  Too many don’t yet own maturity and compassion.  Breaks my heart.

And then there are the soldiers who, maybe more than any, at least more than many, are forged and designed to believe themselves unbreakable.  Spit shined and polished, at the peak of their physical potential and mental sharpness, they march into our wars with the tools to break what they have to and rebuild what they need to.  But perhaps not the tools to return to a world when they can no longer tie their shoes.

We’re hurrying now to clear the kitchen table before company comes.  TBI resulting mostly from blast events have become the signature injury of this war.  So many, too many, are returning to flood the system with injuries that are often hard to diagnose, lengthy to treat and stubborn to heal.

They’re killing themselves.

I just read a story this morning about some of the soldiers who have returned from duty to deal with, not only an economy where jobs are thin, but also to a place where their loving family and friends cannot completely help them quiet the demons of their memories nor the every day shouting of new challenges brought by TBI.   They are searching and struggling and trying to hang on, desperately clinging to some morsel of hope.

One story, in particular, poked and jabbed at my heart.  A young man had struggled long and mightily after returning from duty.  He needed more treatment and couldn’t hang on to see if that next treatment could help him.  He killed himself and, the next day, his mother received a call from a treatment center saying that a bed had opened and he could check in.  “One damned day,” she lamented, in tears.  

One damned day.

I’d like to tell every teenager who feels so isolated by their TBI…every soldier who is struggling to find something that sings of sense…

I’d like to tell them that one day it does get better.   One damned day.

That the transition from “everything was so much better then” to “I think maybe today is better than yesterday” is uncomfortable and awkward and painful and confusing and frustrating and flat-out sad.

That some of the people you thought would be the answers or have the answers are going to let you down.  That some of the dreams you so painstakingly dreamed, often for years,  are going to have to be disgarded.  And that, for a while, one damned day is going to look like the one before it and you’re going to wonder why the hell everything went so wrong.

And then I’d tell them that one damned day, something is going to quietly turn.  One maybe quiet, unsuspecting day…you’re going to find what you need, even if you aren’t really sure what that is just yet. 

That around a hundred curious, crazy corners and down a thousand dusty roads you never heard of, you’ll find what feels like home. 

You’ll find you.

But you gotta stay.   You gotta stay and fight.   It’s your new tour of duty.  A new enemy.  A new battle.  And, though you have laid down your weapons and stowed your uniform, you remain armed.  

You are armed with today.  And, God willing, tomorrow.  And the day after that.  And with every day you put between you and the moment you were injured, you move closer to the day when you integrate your injury into a you that is whole again.  

Doesn’t matter that some of it doesn’t heal.  And, likely, some of it won’t.   But you can learn to stand again, even if you no longer have legs.  You can find again your voice, even as it sputters yet in hoarse whispers.

I wish you all one day.  One damned day.  One glorious moment when you realize that you just planned for something good to happen.   That you’re looking forward to something.  That you just learned something extraordinary in this new life.  That you just felt your heart love again or heard the sound of your own laughter again.  That day when you feel, like the first pitch on Opening Day, hope.

Keep walking toward that day.   Even when each day might feel like a thousand, keep moving forward.   Keep fighting.   Keep staying.  Please, keep staying.  There are more than you can possibly imagine, cheering your every step.

April 4, 2009

Anger’s Place

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We can do this!!!!

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