Kara Swanson's Brain Injury Blog

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.

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