Kara Swanson's Brain Injury Blog

April 23, 2018

Look Where You’re Looking

Filed under: Uncategorized — karaswanson @ 3:40 pm

In all the correspondence I have enjoyed with so many survivors over the years, the biggest complaint seems to be that their people don’t understand them and their injuries.

This is a frustration, for sure.  It’s exhausting to try and explain things that don’t even make sense to us, especially at the beginning.  I can remember so many people asking me so many questions that I had no answers for.  I’ll bet I made some shit up.  LOL

But, over the years, I have come to appreciate the fact that people cannot understand.  We have to keep from hoping that anyone we love will know this so intimately.  Only if they are injured could they know…

And, even then, their experience would be discreet to their damage and their bodies and their lifestyles.

That’s why we are here, you guys.  Together, all of us.  I get such a kick out of seeing the 100+ countries that this blog travels to.  Canada and Australia and the UK, a lot (hi, you guys!).   But also to Singapore and Mexico and Niger and Sweden.

Literally all around the world we go  :)))

We have to try to stop setting ourselves up for heartache and disappointment by hoping that all of our peeps will be able to fulfill all of our needs.  It cannot work that way.

To those whose people accuse them of lying or malingering or failing, in one or a hundred ways, I’d zip those people right out of my intimate places.  You don’t have to understand everything in order to believe the person experiencing it.

My people, God bless them, have come to know ME and to believe me!  In the absence of every answer that made sense, they simply took the time to know me and how I had changed and what that implied.   They didn’t need to know everything about our brains or even everything about my damage.  They just needed to figure out how to help me stay in the game and keep moving forward.

That’s all we can ask for.

Please don’t expect all your people to understand what this feels like.  Thank God they should never.

Take a good, hard look at those who would accuse you and steel yourself from continuing to go to them for something they cannot offer.

And then come on back here.  🙂  You, from New Zealand.  You, from South Korea.  You, from Ireland.

Come back where we are all here in our brain injured stew.  Pretty awesome, all  🙂

We may be threads alone, flinging and clinging…But, together, we all make up one great blanket that is meant to warm us all.

Can’t lose a one of you.


I love you guys.  xo

April 1, 2018

Informative Conversation

Filed under: Uncategorized — karaswanson @ 4:46 pm

I belong to a Facebook group for women who have suffered concussion and TBI.  One of the conversation threads really tore a scab off for me when the women were lamenting how so many of their spouses, kids and loved ones are so impatient and unforgiving when it comes to how much they forget in day-to-day activities.

It hurts, still, to recall how, when my dad would have another stroke, the hospital and rehab personnel would ask him what day of the week it was, what year and who the president was.

It didn’t upset me that he didn’t know the answers.  I didn’t feel impatient with him or irritated or embarrassed of him, like so many in the FB group recount.  Instead, I felt sick to my heart FOR him for, even in an advanced stage of cognitive damage, there was enough of him there to feel the shame at not knowing.

It breaks my heart still.

Until it starts happening to you, you cannot imagine the pains of embarrassment and vulnerability that come with the realization that you don’t have all the tools you used to wield easily.  Whether from age or injury or spreading condition, the stealing of our memory is a heartless, cruel thief.

For those of you struggling with loved ones who are intolerant of your problems with memory, I invite you to send them a copy of this blog and invite them to be a part of your SUPPORT GROUP that is willing to help ease and reduce such a painful part of our injuries.

Informative conversation is an on-going practice that keeps people with cognitive impairment “in the game” by using cues in everyday conversation.

Instead of fearing that and waiting for a brain-injured person to forget that son Timmy has his first baseball game on Tuesday, family members can help by inserting this information into everyday conversation for days leading up to Tuesday and throughout the day on Tuesday.

For example, they can say things like, “I wonder if Timmy is getting nervous for his big first game on Tuesday?”  or “Maybe we can take Timmy out for ice cream after his big first game on Tuesday” and “Do we need to figure out how Timmy is getting to his big game on Tuesday?”

In more severe cases of memory dysfunction, loved ones can help by integrating even more basic, centering facts into conversations.  With my dad, I used to start out my conversations with him saying things like, “On this wonderful Spring day in April, Dad, how are you feeling today?”  or  “With Christmas just two weeks away now, Dad, are you getting in the Christmas spirit?”

It’s easy to stand outside of us with our lousy memories, point out our short-comings and say, “There you go again!”

Anyone can do that.

But if support people and loved ones actually want to support and love, it would be great help if they would “get in the game” and actually be a part of a positive solution.  It doesn’t take a whole lot of effort or time and the difference can ease a lot of stress and aggravation in families.

If words matter then make what you say be helpful and supportive and easing to the person who is struggling.  By incorporating information into your sentences, you are GIFTING those of us who are exhausted by our struggles.  Please help instead of just pointing out that we are not who we once were.

It is already heart-breaking to know.


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