Kara Swanson's Brain Injury Blog

September 10, 2017

Re-BUILD

Filed under: Uncategorized — karaswanson @ 12:13 pm

As I’ve watched coverage of these hurricanes, first Harvey and now Irma, I am struck, like many times before, by the parallels of any disaster.

I have compared brain injury, for all these years now, to a hurricane or a tornado that comes and shreds the worlds we knew and the lives we created.   In my book, “I’ll Carry the Fork!  The 20th Anniversary Chapter,” I talk about how one of the cruelest truths of our injuries is that, like these hurricanes we have been watching, a storm turns any way.

Sometimes you end up watching it from your safe living room on the Weather Channel and sometimes you end up with twelve feet of water in your living room.

How the similarities really hammer home for me is in two ways:

First, there is attention and support in the acute phase of a disaster.  For each of these hurricanes, the world’s attention and media coverage blanketed these areas and all of the local and federal government’s resources were offered in order to help the victims.  Support and supplies arrive from, literally, all over the world and everyone bands and bonds together in the immediate aftermath.

Similarly, when we are brain injured, most of us enjoy immediate and gathering attempts and offers to help from the medical community, insurance, family and friends.

But the second way that I see our injuries and how they resemble these disasters is more important and, often, more damaging to us.  It is in the later.   The after.

Already coverage of Houston and the greater areas of Texas has given way to coverage of Hurricane Irma.  In another two weeks, the media will be focused on the next wild fire spreading or hurricane coming.

Similarly, with our injuries, after the initial crisis period, most of the help that was ours to enjoy in the immediate aftermath runs out or moves on or returns:  treatment, insurance, support.

It is a lonely process then.

Those folks in Houston, three weeks later or a month later, are left with homes that are just devastated.  Like those of us with brain injury, they are faced with two choices:  either they do not return to their old lives or they return and begin the process of re-building.  There is no in-between.

Those folks cannot return home to a house full of water with fish and crocodiles in the murky stew and everything sodden and growing mold and bacteria.  They cannot just sit down on the sofa and hope for better.

You wouldn’t imagine any storm victim would return home and sit in ten feet of water and flip on the lights where there is no electricity and open the fridge where it hasn’t worked in two weeks and take out food to eat and try to use the toilet when the sewage is all over the neighborhood.

It is glaringly clear that, in order to return to their old lives, things must be fixed and re-built.

Similarly, we cannot just return to our lives after a significant injury and just expect everything to be the same.  If we have suffered damage, if things are actually broken, then we cannot expect to simply resume where we left off.  It’s not going to happen.

For us, we have the power to re-build lives and re-create them and be successful and happy after that.  But if we do not accept the changed reality, then we are just sitting on a sodden couch with fish in the water and bacteria and mold growing on everything we’ve ever known.

TV crews won’t catch most of the hundreds of thousands of families in Texas when they tear out their carpet and drag all their belongings to the curb and rip down the drywall.  Those families will be alone when they try to heal the rashes from wading through the muck and when they try to get their kids into new schools somewhere too far to travel when their cars are all washed out.

Re-building is lonely and it is difficult.  For us, as brain injury survivors, it will affect a hundred daily decisions, routines and familiarities.  It will challenge our comforts and it will force us to give up some of the things we held precious.

But we gotta get busy before the mold grows.

The longer we wait, after brain injury, to get busy re-building, the more the mold grows and the more precious things we must drag to the curb as garbage.   For hurricane victims is will largely be material goods they lose.  For us, it will likely be our self-esteem, our relationships and our places in family and community.

It’s up to us.  It’s a lonely, overwhelming challenge to re-build.  But the question we must ask ourselves is this:   How do you see the next 20 or 30 or 40 years?

Depending on when you were brain injured, you might live way more years brain injured than not.  For me, in another ten years, I will have lived just as many years with a brain injury as I did without one.

What are we going to make those years look like?

If those folks in Texas and, soon, in Florida, just sit in their houses for the next year and do nothing, the decades before them are going to be filled with negative and dangerous ripple effects that will plague them the rest of their lives.

But, if they do the arduous, lonely, awful work of re-building, they may be back to enjoying life in another year or two.

Can you live with that?

For us, we are faced with many of the same scenarios.  The longer we wait to accept our injuries and to adjust to them and to re-build lives that succeed despite them, the more of our remaining years we will offer up as disaster ruins.

It’s up to us.

Before we can get busy enjoying our lives again, we have to get busy doing the dirty work of rebuilding them.  It may include new jobs or no jobs, new equipment, new meds and new strategies.  It may include new thinking and new awareness and new humility in accepting help and honesty and limitations.  It may include help that we feel we would never need or should never need like depression meds or therapy.

But it’s all worth it in order not to sit there in cold, wet, smelly lives that are covered in mold.  It’s all worth it if the alternative option is us living alone the rest of our lives with our pride and our egos because we refused therapy to help with our relationship problems or meds to relieve our depression or anger.

In any life, we will be forced to do things we never imagined we could or would choose to.  There will be people in hurricane-ravaged areas literally dragging crocodiles out of their living rooms…

For those of us who are brain-injured, we may have to choose to admit we need help to cope or help to walk or help to think or help to love and participate in our relationships again.

If recovering and re-building takes a year or two, even longer in some cases, I’ll still believe it’s better than the mold on the sodden couch, any day.

Let’s get busy building new, better, happier lives!  Rock on.  We can do this!!!  :))))

P.S.  A big thank you and shout out to those of you who have reached out recently and shared the stories of how, “I’ll Carry the Fork!  The 20th Anniversary Chapter” helped you in your recovery.  Can’t tell you how much that means to me.  I consider some of that writing to be my best ever and I was starting to think that the only people who would ever read it would be a Swanson.  LOL.  Thank you, thank you.  You really touched my heart.  xoxox

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2 Comments »

  1. Very powerful essay. And it got me thinking about when you said at some point one is living with the brain injury longer than before it; for my daughter that is in 7 years and she won’t even be 25 – but hopefully she will have finished both high school and college by then. We’ve had to adapt and we’re trying our best to give back locally to help others; she’s making her Girl Scout Gold award a TBI awareness workshop – we are at the critical initial step of finding a group that will be her sponsor. She’s hoping to do this through the school and also create a return to learn document that can be used for others like her who suffer a childhood TBI. Love your essays – you always give me food for thought!

    Comment by Tanya — September 10, 2017 @ 3:15 pm | Reply

  2. Sounds like your daughter is doing well and that you are positively involved in her recovery and re-building process. Thank you so much for writing. Good luck to your daughter and to your family. Big smiles here. Thank you for making my day. )))

    Comment by karaswanson — September 11, 2017 @ 7:51 am | Reply


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