Kara Swanson's Brain Injury Blog

September 16, 2021

One Brave Step

Filed under: Uncategorized — karaswanson @ 9:08 am

Every novel ever written began with one modest sentence. Every amazing weight loss achievement began with one step or one eating battle won. Every fabulous new dish began with a recipe or a grocery list. Every reconciliation began with an ache and a heart’s turn. Every glorious love relationship began with a need and some nervous hello. Every new school and awesome job began with a scary first day. Every worthwhile change began with a decision to change. Every recovery began with a desire to make things better.

Every marathon run began with tying shoes.

For each of us…for everyone….that big, scary, hairy THING we dare to want is brought nearer with one tiny, modest inch in that direction. We achieve the mysterious, scary things we want by starting with the simple, familiar things that we can do.

Rock on, all of us. Let’s tie up our shoes and GO!!!!!

August 24, 2021

After The Blitz

Filed under: Uncategorized — karaswanson @ 12:16 pm

I was watching a film the other night and two characters were driving through a bombed-out Britain after the Blitz in WW2. They were marveling at the destruction. Astonished. One character commented that he heard people estimating it would take sixteen years to rebuild.

How long does it take?

How long does it take to get over the shock, to gather what’s left, to clear the clutter, to measure the damage, and to rebuild again?

How long does it take any of us? After a brain injury, after a divorce, after the loss of a spouse or a child or a parent…

I think the key for any of us in any rebuild after any bomb blows up our lives is to identify who can help in what way. Who does what best? Who has the most experience, prowess and willingness to help?

I think a lot of us boggle down in our recoveries because we go to the wrong people for things or we expect things out of people that they are qualified to provide.

After a brain injury, I’ve heard many of us lament that we weren’t getting what we needed from certain people. Maybe a neurologist was dismissive. Maybe a friend got tired of hearing about it. Maybe a spouse or a parent believed we “should be better by now.”

A great way to shorten the time it takes to clean up and rebuild is to identify who can do what most effectively for us.

A neuro surgeon isn’t there to hear how our family thinks we should do more and be better by now. A friend will only listen for so long before they want to share what’s going on in their life. Kids want a parent who is interested in them. Partners want to talk about other things sometimes and feel like they are still in a hopeful relationship.

The truth is, neuro surgeons cut. They are not there for all the warm and fuzzies. Primary doctors might offer some comfort listening but, usually, they are restricted by their employer to a certain number of minutes to spend with a patient. Loved ones who put unrealistic deadlines for our recovery usually don’t understand brain injury any more than we did at first. Insurance personnel are coming at us from a perspective of their policy mandates and how much our situations are going to cost them. Employers are just trying to figure out if they should replace us or wait.

It comes at us from a lot of angles and we are just trying to keep our heads above water.

If you want to reduce the time spent in the messed up pile of recovery madness, try to focus on identifying. First, identify what you need. What is it you feel you need right now?

If you are experiencing new symptoms, definitely contact your doctor. If you are finding that friends and loved ones are tiring of your situation, give them a break. Instead of always talking to the same people about your ongoing situation, turn to them, instead, for a fun break and a healthy distraction. Utilize a therapist to provide you with helpful listening, instead.

Choose brain injury-related resources for brain injury-related support. Find it here. Join a local support group in your country or on Facebook. Fellow survivors are the only ones who can closely appreciate what you are going through.

Identify what is useful information. If a spouse or a loved one is telling you that you should be “over it” by now, that IS useful information. Useful information about them. They are telling you that THEY are over it now, more than likely. They’re telling you they need a break, they need a new conversation, they need to share your time in a different way. That info is key to keeping our relationships intact.

Identify when friends disappear, when kids act out, when spouses lose their temper. These are all telling signs that they are needing to move forward.

Life moves on. People need to. If we want to go with them, we have to find ways to shorten our recovery times so that we can keep up. We often hear of a 24-hour or a 48-hour news cycle. Some big breaking news shows nonstop coverage for a day. Two. A week, maybe. And then the next breaking news takes over.

People rarely talk about some of our biggest tragedies. Pearl Harbor. 9/11. Tornadoes or hurricanes or school shootings. Presidents who were assassinated….

Everyone moves on. The bigger the event and the closer to home, the longer it takes. But life, by definition, is a moving thing. We have to keep moving.

We can’t live forever in the immediate aftermath of a loss, a divorce, a death, a tragedy. It is unsustainable to feel that much pain forever. We have to move to a place and create a new place that doesn’t feel so downright awful.

You will always be the most important key to your recovery. YOU! Identify what you need to move forward, not to stay back there. See who is helping you move forward and who or what is keeping you losing ground. Seek new. Break unhealthy ties. Change patterns.

It all ends up being in your hands, under your command. That is the best news. It is your life to rebuild after the bomb went off. It is your life to create new and better and happy and successful.

Couldn’t be in better hands. :)))

August 13, 2021

Times Before

Filed under: Uncategorized — karaswanson @ 1:02 pm

There have been times, for each of us, when we felt demoralized, lonely, hopeless and failed. Way before these injuries, even. Times throughout our lives…

But we suffered the losses and tried again. We set out and joined activities with new people to meet. We tried other instruments, sports or clubs. We introduced ourselves. We did something nice for a stranger. We learned from what didn’t work. We identified what was missing. We welcomed humility. We set down disappointment.

And again. And again.

July 23, 2021

This One’s For You :)))

Filed under: Uncategorized — karaswanson @ 9:36 am

It’s been 25 years since my brain injury.  Most of you know that, before I was two years into my recovery, I was already writing my first-ever book, “I’ll Carry the Fork!  Recovering a Life After Brain Injury.  I was honored to meet many of you, in person and on-line, because of that first book.  It has introduced me to a community that I have spent decades joining and celebrating and cheering. You mean the world to me.

I wrote two books on brain injury and then I wrote a couple of sassy romance novellas under a pen name.  I wrote a book on choosing safe and healthy partners and I co-authored two books with Linda Lucido, one to help kids match their interests with a possible career path and a puzzle book about our beautiful state of Michigan.

In the back of my mind, though, always…waiting patiently, a dare.  A taunt, sometimes.  Could I write a full-length novel?  It has been a dream since way before my brain injury. 

Could I write one now?  How could I write one with this injury?  An injury that damaged my ability to read and follow the written.  How could I weave a plot, connecting it from word to sentence, sentence to page, page to chapter?  It seemed to be knocking on the door of impossible.

Seventeen years ago, I was helping my brothers take care of our Dad after this strokes.  He required 24/7 care and part of my shifts were the overnight ones.  Quiet, empty hours, always listening for him to move, to awake, checking on him every hour…

During one of those overnight shifts, I started writing my first full-length novel.  I didn’t have a clue as to what I was doing. I wrote every night for two years. 

Life happened.  My Dad died.  We cleared and sold our farm. We cleared and sold his house.  I moved.  I started new jobs.  I fell in love.

That novel got dusty under years of life.  I thought about it many times but it always seemed too big a task to try and tackle.

When the pandemic hit and we were, suddenly, locked down for months, I sped through 20 years of Law and Order reruns in short order.

I thought, should I bring out that darned novel?

I decided to try.  I found the files but, sadly, some were corrupted and some, I kid you not, were on floppy disk.  LOL.  I found the one hard copy I had ever printed off and had to re-type some of the chapters.

As I read through the manuscript with my brain injury, I found that I had no idea what the hell I had written.  Who was this person?  What kind of crazy is this? LOL.  I didn’t recall more than a handful of tidbits from the plot I had once-planned.

This last year I have found that I may not be a great writer but I am dogged.  Resilient. I finished the novel and, because I don’t have a team of editors like a Stephen King or a J.K. Rowling, I spent about 8 months editing, learning about formatting, making mistakes and making more mistakes.

I found that a novel will never be perfect.  I may be wiser tomorrow…I may be smarter the next day…I may be a better writer in a month…

But, at some point, like in so many areas of all our lives, I had to let her fly.  Seventeen years after I started and through thousands of mistakes and hiccups and things I had to learn, I am so proud to introduce you to my first full-length novel, “The Lupines Are Marching.”  Makes me cry to even write that.

I slipped a little brain injury in the novel, just for you.  For our community.  Over these seventeen years, I have often thought how much I wanted to write a “normal” novel that people without brain injuries write.  Only my fellow survivors can appreciate the significance of that to me.

It took me seventeen years but I already feel that it is worth every tedious hour I spent trying to connect words to sentences to pages to chapters. It is a lifelong dream-come-true and I wish you all this feeling.  This incredible feeling. 

The Lupines Are Marching is available on Amazon

July 19, 2021

Just Sayin’

Filed under: Uncategorized — karaswanson @ 12:20 pm

We admire the regal eagle, soaring effortlessly overhead. Graceful. Majestic. Beautiful.

We would not feel the same if that eagle tried to drive a car, swim under water or bake cupcakes.

Let’s do what we can. Let’s do what we do best. :))

June 28, 2021

Happy Summer!

Filed under: Uncategorized — karaswanson @ 12:31 pm

Just checking in, saying hello. Hope everyone is enjoying a great start to summer without too too much heat or strife.

I was thinking about a year ago and how much has changed. Here in Michigan we have all but dropped all Covid restrictions and life, for the most part, feels back to normal.

As we start to, finally, emerge from TRULY a once-in-a-lifetime (we hope) experience, it’s a good time to take measure and see how we all did.

How did we cope? How did we adapt? How did we change?

There are some leftovers and layovers from the pandemic. Some things stuck like glue and we have not shed them yet.

Reminds me of our injuries. We are struck, kind of like the pandemic, with some crazy circumstance that turns our whole lives upside down. Some around us believe us. Some don’t. Some refuse to accept us. Some dig in and join our journey.

Last year I found myself digging in, researching, becoming laser-focused on the pandemic and the virus. Learned and researched, learned and researched. Stayed even. Stayed calm, mostly.

I reminded myself, over and over, that I had been through blunt change before. My injury (and yours) are great reminders of how tough we can be when needed.

Like our injuries, we all emerged from this pandemic missing little pieces of our normal. Little cuts and wedges and dents in the armor now. But we sail on.

Keep rocking it, fellow warriors! Keep moving forward. No one was meant to make it through life with all the everything we started with. We all get dinged up. We all lose pieces, here and there.

I heard someone on TV the other day say something (I’m paraphrasing here) about life being a journey and that implies movement. Motion. We have to keep moving.

Forward, Forward, Forward, my brain injury warrior friends.

FORWARD!!!!! :))))) Kara

May 19, 2021

We Can Still Be Super Heroes :)

Filed under: Uncategorized — karaswanson @ 11:44 am

In the 25 years that I’ve been working with and corresponding with TBI survivors, there has been a common thread that runs through the countless upturned lives due to our injuries:

Many of us feel unimportant now. We feel like cast-offs. We feel left behind and left out of our early plans and imaginings that we would end up being important.

Well….gather ’round, fellow survivors. We can still be super heroes. We can still save the day. We can still affect the world in positive, wonderful ways!

Yep, us. :)))

I’ve been reading, lately, on the plight of monarch butterflies and bumble bees. Seems we have squeezed and squished out their natural habitats until they are suffering dire and dangerous decline.

Most of us have no idea who bumble bees, for example, affect most of what we eat. I found this nugget today:

Each year, bees are experiencing massive die-offs throughout the U.S. and Canada. In 2017, the rusty patched bumblebee was the first bee added to the endangered species list in the continental U.S. A 2019 survey from the Bee Informed Partnership states that nearly 40% of U.S. beekeepers lost their colonies during the previous year. Compared to 1947, the U.S. honeybee population has declined by 60%.

Bees pollinate one-third of the food we eat.

From apples and squash to buckwheat and coffee, bees are responsible for pollinating most of the fruits, vegetables, seeds, and nuts that are essential to our diets. Honeybees in particular play a huge role in agriculture, contributing over $15 billion to the value of US crop production.

Changing the world, improving the world, making a difference…these things are not out of our reach, brain injury or not. You want to feel like you are an important part of your marriage? Do the laundry or clean the house for your spouse, if you don’t already. You want to be a great parent, even after your injury has taken so much? Take your kids out and ask them about their lives. Tell them you love them. Ask how you can help them. You might be surprised that their answer has nothing to do with your injury or your perceived failures.

Improve your surroundings by walking around your neighborhood or your local school or beach and pick up garbage. Bring a bag of candy or a tray of cookies to your local fire house. Carry a sack of cheeseburgers with you and pass them out to people standing at a bus stop or homeless in the cold. Plant milkweed for the monarchs and nectar trees and flowers for the bees. Tend them without pesticides and you are CHANGING THE WORLD!!!

Go out and knock this life out of the park! Go make people happy. Go be a positive aspect of your marriage, your kids’ lives, your community.

We. Us. You and me. We can change the world!!!!!

May 11, 2021

Deadlines

Filed under: Uncategorized — karaswanson @ 10:17 am

One of the hardest parts of being a book writer is, by and large, there are no deadlines. No one tells you when the book is done. It’s hard to decide when it’s “good enough” to let fly because it’s never going to be perfect. I could spend the next twenty years working on this current novel because, each time I go through it, there’s another something to fix.

It’s never going to be perfect.

There’s a certain feel to things. A certain look. Symptoms, if you will. There’s a certain feeling to that day after Christmas and the lull before New Year’s. There’s a certain feel to the coming of spring, the turning to fall, the coming of winter. There is a certain feeling to the start or end of a relationship. There are “symptoms” to these changes: newly-cut grass smell, first frost, first time you need to turn on the AC in summer or the furnace in October. Just certain things that tell you what’s here and what’s coming.

In some ways, writing a novel is similar to our brain injury recoveries. They are lonely paths, in many ways. There is the realization that we have to be the ones who finish it because no one else can do it for us. And…

The deadline is up to us.

When we are hurt, no one can tell us that we will be cured in X amount of time. If they do, they are lying or ill-informed. There are tendencies, sure. Likelihoods. But our injuries will run willy nilly all over our lives and all through the years.

Until we stop them. Until we lay down the gauntlet. Until we set the deadline.

You might recognize the symptoms of this nearing time: Your loved ones have moved on and they are tired of hearing about your injury. Maybe you’ve lost relationships with friends or partners who were no longer willing to wait for your recovery or your decision to move forward with your new life. Your doctors may have no more tests to run and treatments to prescribe….

Like me with my novel, at some point, you gotta let her fly! Warts and all. Imperfections and not-quite-perfects. Less than ideals and left of what was aimed for.

Let her fly!

It’s never going to look like how it once did. It wouldn’t have, anyway, all this time later. You would have changed in the time since your injury, one way or another.

It’s time to add ACTION to the things you dream of being. If you want to be a writer, at some point, you have to start writing. If you want to be in a love relationship, you have to assess the requirements and see what you might need to work on. If you want to get a car, buy a house or take a vacation, you have to start saving.

Write a word. Talk to a professional about symptoms that might be standing in the way of a successful love relationship. Save a nickel. Save a dime.

Beyond certain careers, nobody hands out a certificate and tells us that we are, now, officially, this or that. Nobody declares that we are a writer, that we are done with brain injury, that we are ready to be in a great relationship.

We have to make it so. We have to live as if we are what we want to be. If we want to be a writer, we have to write something. If we want to stop yelling at our children so much, we have to stop yelling at our children so much. If we hate our jobs, we have to go find better ones.

Women who get pregnant have a deadline. Nine months, give or take, the pregnancy ends. Our injuries are not that clear. Pregnant women don’t go on with their lives, after nine months, still a little pregnant.

We have our work cut out for us, no doubt.

But, after two years and five years and ten, the cavalry is not coming. We are what we have. It’s up to us to take the step and take the leap.

With this stupid injury, the bad news is that no one else can tell us when our time to wait is over.

With this stupid injury, the good news is that no one else can tell us when our time to wait is over.

Let her fly!

April 26, 2021

What Is Your Message?

Filed under: Uncategorized — karaswanson @ 10:44 am

“The Martian” starring Matt Damon was a surprise to me. It came out like 5 or 6 years ago and I didn’t see it at the theatre but I catch it on TV, from time to time.

It’s about an astronaut on Mars, faced with the most daunting of tasks after everything guessed and everything planned goes out the window and he is faced with extraordinarily-low odds of ever making it home.

Many of us with brain injury find, at some point, the odds of us ever making it home (back to our old normal) are similarly tiny.

In the film, he talks to a group of students about his experience and his message to them is (I’m paraphrasing here) that you solve one problem and the next and the next and you keep solving problems until you find your way back home.

My message to myself and one I share with all of my fellow TBI survivors is this: You solve one problem and the next and the next and you keep solving problems until…

NOT so that you find your way back home. But, instead, so that you find you don’t need to.

April 14, 2021

Castles Out Of Sand

Filed under: Uncategorized — karaswanson @ 12:07 pm

I’m sure you’ve seen them….glorious castles in the sand. Pictures near the beach, gulls overheard, sun shining brightly….

While most of us created modest block or bucket structures out of sand on the beach, others take that same sand and add unchained imagination. They make glorious, amazing castles of awesome, even knowing they will be overcome by waves, at some point, and drawn out to sea.

Think of those wild-good artists who create lifelike pictures from chalk on streets and sidewalks. You’ve seen them? Some are pictures of holes that are so real people avoid and walk around them.

They spend hours and hours creating, knowing full-well the next rain will wash away their latest masterpiece.

I guess what I’m thinking today is that so many of us get hooked and become obsessed with the 73 things we cannot do or the measures of slower or the shades of less we feel after injury.

Maybe we should make glorious castles anyway.

Maybe we should just focus on taking the simple and making it great. Making it awesome. Making it bad-ass. Making it satisfying and rewarding. Making it for the people we love or the loves we seek.

We don’t have to be everything. We were everything even before we were hurt.

We weren’t.

But we can be enough and more in all the departments we seek happiness and success from.

Do you want to work, again, after injury? Find out what you love and find an offshoot of that love that you can do well. Something that you can knock out of the park. There are dozens of offshoots that spring up from every interest, every job, every subject. There are ways to be a part. An excellent part.

Do you want to find, again, after injury? Find out the basic rules to healthy, successful relationships: Be safe, be generous, be kind, be stable, be supportive. Look at each of those elements and see if you need to tackle them with acceptance, change, therapy or medication.

You don’t have to, only, do the one job and have the one life you had before your injury. The injury itself is begging to convince you of this.

But life is full of a thousand jobs, a million hobbies, a billion people to choose to love.

Take one, choose one, knowing that the waves may come again to wash that masterpiece away.

Build it, anyway. Build it with a bucket and sand, even when it might have been more glorious using the concrete and steel you once knew.

Build it, anyway. Use what you have. Use what is available to you.

And make that masterpiece, again and again.

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