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.

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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.

March 20, 2009

Maybe The Miracle…

I was in an airport one day and a man came up to me and asked me why I used a cane.  I told him about the balance problems I have since my injury.  He says to me, sure as sure can be, “The reason you aren’t cured and you didn’t get a miracle is because you don’t have enough faith in God.”

Now, this was a total stranger and our conversation, up to that point, had consisted of about three fairly brief sentences.  But he was sure.  Confident. I said to him, “Sir, you don’t know anything about me or my relationship with God.  Perhaps it never occurred to you that my standing here, given the circumstances of my car crash, is exactly the miracle God intended?”

Wherever I go to speak and whenever I come across survivors and their family members and friends online, I’m often asked if I will pray for their loved one who has been traumatically brain injured.  At one particular event, a woman came up and pulled me aside and told me how important it was that I meet her son who was severely injured, almost dead, in  a vehicular crash.  As I was walking to meet the kid, she told me how they pray daily for him to be healed and asked me several times if I’d pray for him to be healed.  She described how awful and serious the car crash was and how her son had been through this and been through that.

I met the kid.  Nice, handsome young man.  I spoke with him for several minutes.  He didn’t have any obvious problems speaking or processing.   He wasn’t using a chair or a cane or crutches.   I asked him what his biggest challenges are and he said his only real problem was that, when he was tired at the end of the day, his arm hung a little at his side.   But he joked that he played soccer so it didn’t really matter because you can’t use your arms anyway.  His mother confirmed the hanging arm and said, “Yes, we are praying for a miracle that his arm returns and doesn’t hang at the end of the day.  Kara, please pray for him too.” 

I looked at her and quietly said, “I think your miracle has already come,” and I walked away.  Incredulous. 

Natasha Richardson, by all accounts, barely bumped her head and was talking and joking after it.  And now she’s dead.   They call it the “Talk and Die”.   Brain bleed, coma, no brain stem activity, death.

That’s it.  Here’s a young woman with a loving husband and teenagers, in the prime of her life.  Close-knit family.  Talented, well thought of, attractive, personable.  Gone.

If you’re a TBI survivor and you’re reading this right now, maybe your miracle has already come.  So many of us spend so much time hating this and cursing it and praying for miracles to cure symptoms which, in the big picture, shouldn’t be measured when qualifying successful recovery.  When you have come inches from death and when others are dying every day after seemingly innocent and less severe incidents, do you really need to have that slight hanging arm at the end of a long day healed and cured by God????

Natasha Richardson is one of the latest who doesn’t get to curse this injury and hate this injury.  That is left for her grieving family, friends and fans.

Maybe the miracle has already come.  Maybe instead of waiting and hoping and praying for residual symptoms to disappear and spending time cursing their stay, perhaps it’s time to acknowledge and be grateful for the miracle that is this.  Right here.

I never believed  that God needed to provide me any more of a gift than I already enjoy.  When someone gives you a rainbow, you don’t go looking to see if they brought roses too.  I could have been so easily dead that day…Seems ridiculous, and worse, to ask for  more.

Maybe we need to take a look at what it is we’re praying for.  Instead of asking that my legs would start working right or that my speech wouldn’t get messed up when I’m tired, I ask that I don’t ever waste the opportunity to hug like I mean it, to forgive, to be kind, to show love, to do the right thing.

Instead of asking that I remember better or deal with crowds better, I ask that I don’t waste another day failing to appreciate the people, pets, abilities and opportunities I am so blessed to enjoy.

More than most, we survivors of TBI and other death-defying events and conditions and diseases, must remind ourselves every day that we are, in fact, the lucky ones.  Make no mistake about it.   We still get to choose every morning what kind of day ours is going to be when so many are gone by nightfall.

There’s nothing to be bitter and angry about when you realize that the miracle has already come.

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