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.

Advertisements

30 Comments »

  1. OH KARA.
    Thank you. ❤

    Comment by Barb George — May 26, 2014 @ 11:10 am | Reply

  2. I really like this post.

    Mostly because I have just got to a place where I can fully recognize where I am at and, how much I am struggling.

    I am so very tired of bumping against my new limitations, over and over again. It feels like that annoying record with the skip – that you wish would just magically stop, so that we can get back to our song, the way it used to be.

    It’s like the boxer, who just cannot give up, as he is obviously being pummeled by his opponent – and everyone is whispering “just stay down”.

    If a boxer ‘stays down’ – he is declaring defeat. He is giving up.

    If you have a brain injury, how do you approach this? It seems like it’s going to be a long ride and as a society, we are not very accepting of this reality.

    “It is going to take you a l-o-n-g time to f-i-g-u-r-e things out”.

    I loved what you said about your “three jobs”. That you purposefully chose them – so they would fit your ‘new’ needs – is inspiring to me and helps me develop a different perspective on what ‘challenge’ now means.

    I do like challenging myself. ‘How’ I challenge myself – is my next step.

    Thank you so much.

    Comment by A Blanc Canvas Gallery — May 26, 2014 @ 1:48 pm | Reply

    • I think the first step is to always be kind to yourself. To look at the times you stumble and ram up against your challenges as something learned about your self and not as a failure. It’s new information about what you can do. Our whole recovery is like a puzzle now. We have to fit the new pieces. It’s frustrating to start back at square one but encouraging to remind ourselves that we did this many times before: find what we’re good at and what makes us happy and follow that path…Sometimes TBI seems like so many problems. I think it helps if you target one at a time, taking on the one that upsets you the most. Focus your best attention on how to solve it. How to find a way to have it in your life without it itching and pricking. You’ll make your way. Everyone has things in life that knock us to the canvas, brain injury or not. There’s no giving up. Yes, sometimes we have to rest and regroup but we rise again. We come out for the next round….:)

      Comment by karaswanson — May 27, 2014 @ 8:15 am | Reply

    • Thank you Kara [crying with resolve].

      Comment by Christine — May 27, 2014 @ 8:27 am | Reply

      • Yes, with resolve. 🙂 Rock on! We are cheering for you!!!!!!!

        Comment by karaswanson — May 28, 2014 @ 8:04 am

  3. Another great post Kara. I like this quote “if you don’t want to live a brain injury-consumed life, then you cannot live a life that is consumed with brain injury.”

    Comment by Mark — May 26, 2014 @ 3:07 pm | Reply

    • Thanks, Mark. Glad it helped.

      Comment by karaswanson — May 27, 2014 @ 7:23 am | Reply

  4. Hi Kara. Right on. It took me about 3 years from my injury to grasp this concept – but once I did it changed my life (as if brain injury isn’t a life changer) to the point that I’m in charge of it (most of the time) and not the other way around.

    I’d always lived my life by the 3 “L’s” – Live, Love, Laugh. Now I’ve added the 3 “A’s” to my life – Accept, Adapt, Appreciate. As you rightly say – we choose how life goes on from “That Day”

    It’s a timely reminder. Thanks sooooo much :-).

    Kind Regards

    Kym (The Pool Man) Taylor Director / Owner Taylors Pool Service 14/109 Ford Road Onekawa Napier 4110 Ph +64 6 8353065 M 021 465697 http://www.poolman.co.nz

    Comment by Kym Taylor — May 26, 2014 @ 5:27 pm | Reply

    • Way to go, Kym!!!! :)))

      Comment by karaswanson — May 27, 2014 @ 7:24 am | Reply

    • Thank you Kym. I will send you a link when I am finished. I understand flat – no worries.

      Comment by A Blanc Canvas Gallery — June 7, 2014 @ 8:43 am | Reply

    • I love your 3 A’s!

      Comment by Danielle — July 5, 2014 @ 4:17 am | Reply

      • Thanks for stopping in, Danielle 🙂

        Comment by karaswanson — July 5, 2014 @ 9:34 am

  5. Kara, you are so brilliant! You get it! You get it all! both the injury and the strategy for successful living. Thank you for being a wise lantern in the dark for so many of us. “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.” I am a resilient, positive person, and TBI is a massive challenge. After 3 years, I have improved enough to be accepting of the cognitive issues. It’s my visual motion sensitivity that I cant get there with, and sucks me into the pity party and pits of despair. I can’t drive, ride a bus, walk far or exercise. Fun dance videos on Facebook are “hammering me with reminders” constantly, as are my pysically active friends. I have always been active and athletic, and being locked in my house, unable to get out without calling a friend for a ride really sucks, physically, mentally, and emotionally. How in the world do I embrace that for my life?? I don’t want to keep looking at what I can’t do. I am bored with that. I want to build a new life. I just can’t figure what the foundation is if I can’t move without feeling awful. Any ideas?

    Comment by Nathalie — May 26, 2014 @ 9:36 pm | Reply

    • Your symptoms are bad ones, for sure, Nathalie. I didn’t drive for 18 months and it was awful always waiting on someone to come and take me and I lived in an area where cabs rarely came, often keeping me waiting for two and three hours at a time…
      I feel for you. It’s a loss of power that most stings, I think. Freedom and independence and power…The idea that comes to mind is to hire a driver. Maybe once a month, twice a month, whatever your needs. Not a friend or a family member who will have opinions or who might not keep your confidences. Hire a stranger but one you can check out for safety. Then the power is yours. You choose. You decide. You go.
      There’s no telling how long it will last. I didn’t think I’d drive again and they installed a left foot accelerator and I relearned how to drive. Don’t give up hope. There’s no end to possibilities. But, in the meantime, you are a grown woman and you deserve to have power and independence. Imagine yourself a big star who has a driver. Seize the power. Set the boundaries and the rules. Make it your best situation. Make it yours. Short of that, I’ve known many like us who moved to locations that had everything within walking distance. I can drive but I moved to somewhere so that most of my world is within five minutes of driving. Maybe a college campus where they are built around walking. You are a very very bright woman. You will make this work for you. Write back and let us know what you decided. :)) Kara

      Comment by karaswanson — May 28, 2014 @ 8:26 pm | Reply

  6. Hi, Kira, I am kind of new to the world of TBI (almost two years and now starting to accept it), and want to learn more about how people like us make it through difficulties. Had very good brain, was on the last year of my nursing school, worked at the hospital (very intellagant) , three beautiful children, everything was perfect… until the incident that left me with brain injury and lots of other difficulties…I was in a house fire during work that was determined to be arson….. I saw at amazon your book with good reviews and ordered it to read. Then found out you had a blog, read several of them, very inspiring…

    Comment by Sarvinoz Kadyrova — May 26, 2014 @ 10:59 pm | Reply

    • Welcome, Sarvinoz! I’m so sorry to hear you got hurt. Sounds like you had a wonderful life full of all of your choices and I’m sure this has been a stark change in plans. Here you will find a whole bunch of us who feel your pain. We feel for each other. We cheer for each other. You are welcome here and we are all wishing you a great journey past this injury. 🙂 Kara

      Comment by karaswanson — May 28, 2014 @ 8:18 pm | Reply

  7. Hi Kara,
    So sorry I misspelled your name earlier in my post….Thank you for the very kind welcome message.

    Comment by Sarvinoz Kadyrova — May 28, 2014 @ 11:43 pm | Reply

    • No worries about my name spelling. 🙂 It’s all good. K

      Comment by karaswanson — May 29, 2014 @ 6:04 am | Reply

  8. Hi again Kara. Here’s a poem I wrote (over a number of days) which might inspire some of your readers. I use it to remind myself how good life is. You are most welcome to use it if you want

    So many thoughts to think
    No energy to think them
    Gone in a blink
    Holding me to ransom

    Brain is quite crowded
    Flitting here and there
    Like a movie on fast forward
    No pause button anywhere

    Close my eyes
    Block my ears
    Stifle the cries
    Shed a few tears

    Feeling quite seasick
    Waves of fatigue
    Want to give it the flick
    And be freed

    Darkness falls upon me
    In the form of sleep
    Where a minute is twenty
    Then it all repeats

    Day has gone
    Night is here
    Suffering’s been long
    But avoided despair

    Took some meds
    To zunk my brain
    Defrag my head
    At peace again

    That was yesterday
    Somewhat flat
    This is today
    And “I’m Back”

    This is my new life
    Dark and light
    On the edge of a knife
    But I Will be alright

    Live, Love Laugh.

    Comment by Kym Taylor — May 29, 2014 @ 9:05 pm | Reply

    • Hi Kym, I wonder if I could post your poem on my blog? Is there a title – for the poem?

      Comment by Christine — June 2, 2014 @ 5:11 pm | Reply

      • Hi Christine. I’ve been “a little flat” the past few days and have only just now seen your comment. Sure. You are most welcome to use it. It’s titled “This is today”.

        Comment by Kym Taylor — June 7, 2014 @ 3:10 am

    • ablanccanvas.com

      Comment by Christine — June 2, 2014 @ 5:12 pm | Reply

    • You are already getting requests for it. 🙂 Thank you for sharing. It’s terrific. Kara

      Comment by karaswanson — June 2, 2014 @ 8:40 pm | Reply

  9. This poem is wonderful. My son 27 had a TBI in December last year and has been home for one week while waiting for outpatient therapy to start. The second verse in that poem is just where he is. I know it’s so early in his journey and I am so grateful he is as well as he is. Your blog is fantastic

    Comment by Iris belshaw — June 1, 2014 @ 12:52 pm | Reply

    • Thank you for the kind words, Iris. I’m so sorry to hear your son was hurt. We’re all wishing you and your family a happy and successful recovery. Stop back and let us know how he’s doing. 🙂 Kara

      Comment by karaswanson — June 2, 2014 @ 6:47 am | Reply

  10. Hi Kara, we have communicated in the past, not long after your book was published and then life changes caused me to lose contact with you. You were so comforting to me as the mom of a son who suffered a TBI in an auto accident. This goes back to 1998 and 99. We discovered a mutual love of our wonderful Red Wings and my son’s accident occurred about 6 months before the awful Red Wings limo accident. I just discovered your blog and am so happy you are able to help so many others with your words. I will stop by again and in the meantime please continue to do what you’re doing.

    Comment by Janet S. — June 3, 2014 @ 9:29 pm | Reply

    • What a nice surprise, Janet. Thank you for the kind words. When you have time, please send an update on how your son is doing now. Kara

      Comment by karaswanson — June 5, 2014 @ 7:37 am | Reply

      • Hi Kara: Life continues to be a daily challenge for my son. He lives independently and functions well in life. But not without glitches along the way, due largely to poor choices he makes in personal relationships and his behavior which has cost him many opportunities. He remains impulsive, his anger has subsided, he refuses to use the tools he learned in rehab to compensate for his lack of short term memory, and other issues. What is so frustrating for me is the fact that he is so very bright, but his lack of self confidence gets in the way. He is lonely and wants nothing more than a loving relationship, but all these things get in his way. He has no difficulty getting a job, but for some of the above mentioned reasons he can’t hold on to the job. That’s pretty much where we are. Thanks for asking.

        Comment by Janet S. — July 14, 2014 @ 8:40 pm

  11. Finding your blog today (and this post in particular) is a gift. I suffered my TBI on July 6, post concussive syndrome has knocked me flat and I feared I’d never regain myself. Today I have hope (just not a lot of patience!). Grateful to you. Donna

    Comment by dbeaton3 — August 1, 2014 @ 10:46 am | Reply

    • Hey Donna!!! Welcome! I’m so sorry you got hurt. Please consider yourself group-hugged, as there are thousands here who cheer you and are wishing you a complete recovery. Hang in there. Stop back and let us know how you’re doing and if maybe we can help. Wishing you well. Kara

      Comment by karaswanson — August 2, 2014 @ 9:44 am | Reply


RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Create a free website or blog at WordPress.com.

%d bloggers like this: