Kara Swanson's Brain Injury Blog

May 9, 2015

Parents of Hope

Filed under: Uncategorized — karaswanson @ 10:36 am

My Mom was the fifteenth of fifteen children, growing up in a teeny town in Michigan’s Upper Peninsula.  She was born in the late 20’s, arriving just in time for the Depression.  My Mom ate lard sandwiches for her school lunch.  She looked forward to Christmas morning when she and her siblings might receive a new pencil or a fresh orange.  That was it.  When they sat down to dinner, often each would get a meatball.  One.

My Dad was born in Detroit in the early 20’s.  He lost his Father when he was seven. His mother gave him and his brother to a foster family for a time and he was forced to sell papers for a nickel that his foster family took.  He spent much of his formative time being ostracized in the attic, eating scraps and keeping up his little brother’s hopes.

Though my Father was a very talented artist, he didn’t make a fortune.  Still, he and my Mom built a home in Warren and raised three kids there.

When I was 11, I decided I was going to play quarterback for the University of Michigan.  I would take the Nerf football out into the backyard on Saturday afternoons in November.  I’m almost embarrassed to recall now, jumping and rolling on the ground, creating game situations in my head.

My parents didn’t tell me I couldn’t be the quarterback at the University of Michigan.  They signed me up for flag football in a boys’ league where I was the only girl and, yes, a quarterback.

When Magic Johnson made Sports Illustrated as one of the up-and-coming stars, I told my Dad I was going to score 2000 points in high school just like Magic.  He didn’t tell me I couldn’t.  He didn’t tell me there was no hope.  He grabbed a ball and went outside with me and rebounded as I shot.

I told my Mom I wanted to be a sportswriter like Mitch Albom.  She told me she would look forward to every article I wrote.

My Mom made sure we left the house every morning after a hot breakfast.  Even when money was tight and rice was cheap and plenty, we ate rice for breakfast and went to school with a fully belly.

Even with such meager income, my parents sent all three of us to the University of Michigan.  I didn’t get to play quarterback but now, as I look back, I realize something that quietly whispers through today’s screaming headlines.

In the last year, there have been so many social uprisings and disturbing accounts of young people throwing bricks and stones at police.  Stories of young people leaving the U.S. to fill up their holes as members of groups determined just to kill.  Stories of young people with such a non-existent respect for life.  Such an absence of coping skills.  Using guns instead of words, killing their parents and loved ones and total strangers out of anger and frustration.

From many of the newscasts, there returns an echo that these young people “don’t have hope” and they feel such a deep-seeded anger that they are willing to harm, destroy and kill.

Many many news guests have repeated that these “kids” are angry because they haven’t been given opportunities.  Their neighborhoods are poor and their education is lacking and there are too few jobs.

It breaks my heart that these kids haven’t been given hope.  A hope that has nothing to do with money.  A hope that springs, not from what is lacking outside but from what is bubbling up inside.  A hope that relies, not on waiting to be saved but knowing they can save themselves.  A hope for tomorrow’s vision strong enough to defy today’s picture.  A hope that looks like an 11-year-old girl who thinks she’s going to play quarterback one day for the University of Michigan.

I’m not buying anger as a justification for throwing rocks at anybody.  While I do agree that non-white and often poor people have endured a long, painful relationship with some police mindsets, there are far too many groups of the angry who aren’t throwing rocks.

They are building them.

I’m just saying that I don’t buy it.  I believe in every one of those young people who are lighting fires and destroying neighborhoods and heading overseas to pick up AK47s.  I believe in everyone struggling at the bottom of a bottle and at the end of a pipe.  Everyone looking at their lousy credit file or those walking out of jail.  Again.  Those struggling with brain injuries and lousy diagnosis and every color of bad luck, bad genes and bad hair styles.

As long as there is the clean canvass of tomorrow, their is hope in today just waiting to be unleashed.

The only fires it’s time to light is in each of them.

The mighty, moving fires of hope.

Anybody can be angry.  Groups in the fist-fulls have known awful, unfair fates.  Unfair is everywhere and yet, so is hope.  So is determination.  So is choice.

Young, disadvantaged black kids come out of terrible neighborhoods each day and go on to excel at top-drawer universities.  Former inmates put their pasts behind them and build new, better, successful lives.  Stable, healthy gay people create loving homes and raise fabulous children.  People with their legs blown off run marathons.  High school and college drop-outs end up finding their niche and making millions of dollars.   People who are addicted end up earning years of sobriety and turning their lives around.  People with brain injuries create new successful lives and positively impact their families, work places and communities.

And it all begins with Moms and Dads.  It begins with the seeds they plant and how they sell life.  How they instill coping mechanisms and a respect for people.  How they doggedly chase any hints of meanness, cruelty, aggression.  How they show what it’s like to overcome.  How they set examples of picking up again, trying again, standing up to fight again tomorrow.

On this Mother’s Day weekend, thank you to all the Moms out there who realized that hope had nothing to do with money.  That hope is free if you are willing.  That, even when life is hard and unfair and wrong, there is a light that doesn’t have to burn in the streets and neighborhoods.  It has to burn inside us.  And inside our children.

Nobody can use lousy schools as an excuse when there are millions of empty libraries begging for people to read their books.  We teach ourselves.  How to speak well.   How to read.  We find how to do things.  We search and we learn.  We ask questions.  We watch.

We can pass on a lot of things to our children.  A hatred for government.  A hatred for blacks or gays or rich or whatever group is unlike us.  We can pass on meanness and how the odds are stacked against “people like us.”

Or we can give them wings.  We can demand that they emerge above every obstacle.   We can create environments where they believe they are better, more capable, smarter and deserving of great lives.  Lives they are resolute in creating.

Thank you, Mom and Dad, for coming from where you did and giving me so much more.  Thank you to all the Moms and Dads out there who realize the most important things you can give your kids have nothing to do with what you earn.

There are countless people out there who overcame tough odds.  They are white and black and gay and straight and Democrats and Republicans.  They are Midwesterners and Easterners.  The spring up from the South and soar from the West.

They are not throwing bricks.  They are building them.  They are not lighting fires in their streets.  They are lighting them in their hearts and in the hearts of all they meet.

Rock on, Mothers and Fathers.  Rock on, you parents of Hope.

March 22, 2015

Just Past Midfield

Filed under: Uncategorized — karaswanson @ 9:33 am

I am back after a couple of months of no blogging.  I’m sure you’re not surprised that this is a long one.  LOL.  I turned fifty in January and I’ve been enjoying this huge milestone and taking time to measure what it means and where I am at this point in my life. I’ve enjoyed amazing teachers along the way, some with specific gifts of wisdom they were lovely enough to share and some good lessons I stole from witnessing behavior on the sides furthest from the sun. Some of it, unfortunately, my own.

It’s so great to be alive! Life continues to offer growth and wisdom and greater understanding, if we seek it. I realize there are lessons I struggle to learn and to keep. I respect and admire and cheer those who seek, on their own paths, to continue to evolve in positive ways.

I thought I’d share some of the things I’ve been thinking about lately. Some of the things I’ve been gifted.  Some of the things I’m working on in my own path:

I’m not sure what the original quote was or by whom but it is entirely true: The facts don’t change, even if we choose to deny them, ignore them, twist them, drink them down or pretty them up.

I’ve realized that, just as sure as great, compassionate people will be there for us in all our life’s crises, they will move on, eventually. It is not a fault of theirs. It is healthy. It is the natural current of life. We can go on with them, battered, beaten, wounded and together, with hope of making a better tomorrow, or we can stay alone with our crisis. Only we can decide.

Kids get cancer, newlyweds die in car crashes on the way to their honeymoons, wonderfully-raised children grow up to be murderers, old people get raped, animals get abused.  Injuries happen, death surprises….Eat the cake.

Make your own money.  Buy your own place.  Learn how to fix the furnace.   Gather your courage to kill the icky spiders.  Only when you can leave a relationship will you truly know if you want to stay.

I’ve realized that we all ended up being things we didn’t intend. Starting each day with that precious little nugget creates the possibility that we might be more compassionate and less judgmental.

Study other religions.  Watch other political news shows on other stations.  Ask people about what they believe in.  Invite different from your own.  Read new perspectives.  Only when we research and seek can we actually be of our own informed choices and not just the result of someone’s influence.  If we take in all voices and all choices and all options, what becomes our own beliefs becomes more real and true and personal.

I learned this one the hard way and I wish every young person could learn this and save themselves heartache: Every bad relationship served up red flags that were either ignored, denied or mistakenly believed would change. Sometimes the best thing you can do for a relationship is to choose to end it.  Bad and broken relationships are, most importantly, lessons to be learned and taken on our way to the love of our lives.

This is one of my favorites: Question all that you were taught and all that you believed. We change. Our perspectives change. We mature. We allow more gray. At least we hope we do. Often the things we were taught or picked up as younger people simply aren’t the case, aren’t valid any longer, or weren’t accurate to begin with.

If you are going to choose to hate, realize the enormity of that word and all it implies. Hate makes our souls and our hearts and the sparkle in our eyes a little darker so choose wisely that which you would give up so much for. Learn everything there is to know about that which you will choose to hate and see, then, if there isn’t something within it to understand, to forgive, to recognize as your own.

When you have someone to love and when someone loves you with good, true, healthy love, every good is that much better and every bad has a little less sting. There is a beautiful gift in the every day and all around you that are not pains and problems and sores. But instead you see the promise and the possibility and the treasures.

People fail in human decency, in relationships, in sports rivalries and in politics when they lose sight of the vital element of balance. When anyone believes their side, their color, their religion, their philosophies, their opinions…are all right and are all that matter-that’s when everything starts to swirl the drain.

So many people are disappointed and wounded by family. To me, it is unfair to place so much pressure on people often so different that, were it not for the same name, you would likely never have met. Nobody can live up to all of that. Family can be many fabulous things but it is spouses and partners and friends where we fill natural holes left and where we get specific and critical needs met.

Everyone has their own path to walk, their own lessons to learn, their own truths to determine. It’s not up to us to judge and point out and lambaste, even when it’s so damned hard not to, sometimes.

I feel sad for a generation coming behind me that, by and large, will lose the treasures of holding love letters hand written, wrinkled and yellowed…Who won’t leave behind boxes of personal pictures…Technology is the most amazing inventions of our lifetimes and yet we cannot allow them to replace our most intimate, human interactions.

If you take a few moments every morning to appreciate the fact that you have warmth and a roof over your head, clean water to wash in and put in your coffee, food to pack in your lunch, a vehicle of some sort to get to any job that pays you money….then how can any day be anything but filled with complete gratitude for how fortunate we are?

When you truly realize this is the life you have and how fast the years are flying by and how real an ending is always approaching, then it’s a clear and easy choice to refuse to participate in drama and nonsense, to decide to shed the toxic people in your life, to gather the courage to dream bigger than you have long dared and to simply terminate the relationship/s that hurt, dishonor, belittle and endanger any precious part of you.

(This one I have to continue to learn…) People don’t want our opinions. By and large, they simply want to be heard. They crave our compassion. Our friendship. They have their own lessons to learn and they are at their own pace. Always giving opinions might make us think we are the smartest person in the room when, actually, it just makes us boorish people who should concentrate more on our own shortcomings.

At some point, it is our life. Ours alone. We can forever blame our parents and rotten exes and lousy bosses and upbringings and injuries and perceived wrongs and a host of other things. But we are the result of our choices. We have this life and it is a reflection of OUR moves, decisions and priorities. If we give power to anything wanting or willing to defeat us, beat us or make us less than our best, that is our choice too.

If you surround yourself with people who possess true and good intentions which you completely trust, you will never have a screaming match. You will never have to feel wickedly wounded or betrayed. If you don’t want to always have to look over your shoulder and protect your back, get rid of the people in your life with the knives…

What is the point if you never open the Christmas presents? What if everyone got up Christmas morning and just looked at the presents but never opened them? Never ate the birthday cake?

We are given a lifetime on an Earth that has such miraculous beauty. In large part and small measure, we are each surrounded by and invited to absolutely fill our hearts and souls with grace and joy and beauty. These gifts have no limit, no end.  They are all around us, available to each of us in every moment we choose to capture.

I don’t want to die and meet my Maker and have Him say, “Geez, Kara, you never made it to the Grand Canyon? How ‘bout those roses your neighbor grew every year? Did you ever stop to smell them?”

We don’t have a lot of time, any of us. Not when you imagine the countless wonders to visit, to enjoy, to relish, to invite. We need to push back at the anger and hatred and darkness and regret and envy which seeks to swallow us entirely. We need to run out early in the morning in our pajamas to see the glorious colors of sunrise. To stand in awe at the sandy shores of the greatest lakes and oceans. We need to wiggle our tickle-toes in the soft, cool grasses. To dance as long as we can move, to laugh as long as we can muster, to sing and to gift love with each last breath.

We can all put a little more living into our lives, if we make it our priority. To stay anchored in life’s precious moments, whatever they are, and not always rush, in mind and body, to the next thing on the to-do list. Everyone is wounded. Everyone is humbled and has stumbled. But it is our choice to be more loving and giving and compassionate and kind. To seek more good in people. To have more fun. To leave less space in our lives and our hearts to hold grudges, to be judgmental, mean, cruel and ruthless.

They will tell the truth about us. Maybe not in the obituary and maybe not out loud. But there is a truth we are making every day in the hearts of those we touch and there will be a truth in how warm and sweet that touch was. How true and real and lasting. Let’s invite good in every sip, every delicious bite, every scene, every encounter so that we have no room in our hearts for hatred, bitterness, envy, regret, violence, and darkness.

December 24, 2014

Merry Christmas

Filed under: Uncategorized — karaswanson @ 7:14 am

We’ve all heard the saying, “Christmas is for kids” a thousand times and I guess I always assumed it referred to fortunate kids who get to anticipate a Christmas morning full of packages under the tree, a new outfit and days of school activities, concerts, plays and all things innocent and wonderful. I also assumed it referred to Christmas as being for kids because their parents were basically all stressed out trying to hunt down must-have toys and pay for those must-have toys, send the cards, do the cleaning and shopping and cooking and planning, knowing those credit card bills will arrive complete with a fire extinguisher come January.

And then I saw a turtle. Not just any turtle. I saw a turtle who had been so disabled that he could no longer move his little turtle leg. And someone, God bless ‘em, made him a turtle crutch wagon out of Legos and the turtle took to it and today is motoring on, rocking it, heading home to his turtle family on his Legos wagon.

Christmas is for kids, yes. But Christmas is for kids because kids grow up to become adults who might just use that aged-old love of Legos to make a turtle walk again.

We all spend our lives seeking those Christmas ideals we forged as kids. Through the rekindling of faith, the excitement of gifts, the smells of favorite foods, the putting up of trees and ornaments and grandmother’s passed-down decorations, we return again and again to try and replicate that which made us believe in…miracles.

We are all yesterday’s kids inside. We are all those kids trying to replicate the best of what we took from our childhoods. How fortunate are we that the gifts we were given, those of tradition and giving and faith, now are ours to hand down again and again.

Sure, yesterday’s kids have made today’s murderers, today’s war mongers, today’s thieves, today’s rapists….But yesterday’s kids have also made the most extraordinary, talented, funny, generous, do-gooding people this world needs and craves. People I know.

You.

Thank you for taking the best of your childhood memories and keeping them, reshaping them and sharing them all around. It never mattered much if we were off key, if the cookies burned a little bit on the bottom, if the packages looked as if they had been wrapped by a turtle…

I’ve heard you sing and you’ve filled my heart with all of your voices, the things you do, the ways you impact and imprint our young people, your gifts of kindness and food and generosity and spirit and companionship. Your sweet, sweet love.
You are yesterday’s kids and, too, tomorrow’s hope…That light is right and that good really does beat back evil. In a world that sometimes begs to differ, you are an army of fabulous. A tremendous and treasured reminder that every morning is, indeed, a gift.

My Christmas wish is that you simply hear my warm prayers that you and yours will enjoy a peaceful holiday season and go skipping into a New Year with renewed good health, enthusiasm and with hearts all full of love.

Merry Christmas with love,
From Kara
And turtles

November 27, 2014

Thanksgiving, In All Her Glory

Filed under: Uncategorized — karaswanson @ 2:08 am

Thanksgiving had always been my favorite holiday.  All my life.  I have always loved Autumn in Michigan.  Crisp, colorful leaves and cider mills and favorite, soft sweatshirts…All those years when my Michigan Wolverines were lining up against the Ohio State Buckeyes late in November with a Rose Bowl berth on the line.  Christmas was still ahead and Thanksgiving marked the beginning of a wonderful, magical season full of great foods and great people coming.

I loved my Mom’s chocolate turkey cookies and her stuffing and a house full of friends and relatives eating a turkey that was, literally, too big to fit in the oven.  My Mom baked pumpkin muffins in the morning and she and I watched the parade from downtown Detroit.  There were pies cooling and a fire crackling and I formed a lot of my versions of ideal all those years.

And then my Dad died on Thanksgiving Day seven years ago and it has really never been the same.

We rushed out of the house that afternoon, turning off the oven and leaving the turkey to fend for herself.  Potatoes on the stove top.  Sweet potatoes on the counter.  Rolls left to dry in a basket on the table.  Butter wilting.  The sound of the Detroit Lions left on the TV.

And I guess we have never been the same, either.  Even unspoken, that day screams in each of us..

But tonight, as I was beginning to arrange the kitchen…While I was putting the Thanksgiving china in the dishwasher and gathering the serving utensils…

I felt that old familiar tug.  That same giggled thrill of a time long-past.

Thanksgiving, I knew, was here again.   Still.  Thanksgiving, i realize, is bigger than me.

There are thousands of cancelled flights tonight on the East Coast, stranding and straying and fraying millions of people.  There are fires burning around the country in protest of a court case in Ferguson, MO.  There are still politicians playing games and terrorists killing families and people doing all sorts of horrific things to each other.

And Thanksgiving’s coming, anyway.

That should tell us something.

What I realize tonight is that Thanksgiving is not a reward.  It’s not what we give, like a tip after a meal.  It’s not simply a measure of what we have and how fortunate we have been.

Thanksgiving is way bigger than that.

We all can say, “I am thankful because….” and tick off all the ways we are well off or better off.  All the nice things we have.  Good health and beautiful children and a job we enjoy.  All the beautiful homes and cars and things….

But what if Thanksgiving is more than that?  More than a list of things that are right?  More than a day?  More than a prayer on a Sunday?  More than a meal once a year on a Thursday?

What if Thanksgiving was who we are…

What if all we had to do was to open up, to rise up, to wise up.

What if we felt and lived and gave Thanksgiving, not because of things that go well but in spite of things that don’t?

I know we’re not perfect in this.  I’m certainly not.  I’ve got things going on.  We all do.  I’ve been bleeding since June and still since my surgery in October.  My checking account doesn’t even have five dollars in it.  I spent twelve hundred dollars fixing my car and it still makes the same flippin’ noise.  I’ve got aching hands and growing chins and stuff to do that I don’t have the time or the money to take care of.   We’ve been plunged into winter a month early and, even since my surgery three weeks ago, I’ve known four people who have been rushed to the hospital for surgeries and emergencies of their own.

And still Thanksgiving bubbles up and spills out of me and I realize that it’s not because of the day.  It’s because it’s A DAY.

Another one.

And maybe that is the whole ballgame, right there.

It is telling that Thanksgiving changes dates every year.  Maybe she hints that she cannot be contained by one.  Thanksgiving is in the dark, frozen mornings of February.  In the soft, warm, breezy evenings of June.  Thanksgiving is a Wednesday in September.  A Monday’s drive home in May.

Thanksgiving is every day.  It is not because of something particular that happened.  Something that pleased us.  A raise.  A casino win.  A good test grade.

It is because anything happened at all.

We can distract ourselves with reasons why a day is lousy.  Canceled flights and nights slept on airport floors.  Flat tires or hard days at work.  Fussy babies or screaming kids.   Apathetic spouses or rising bills.  Growing wrinkles or loud neighbors.  Whatever.  Any of it.  We all get bogged down in the muck.

But to wake up again…

To be given another day of….

Choices.

We may think we are victims of fate, slaves of the system, whatever we come up with.

We may lament how the government steals and the bosses take and this person and that doesn’t appreciate, doesn’t recognize, doesn’t give…

But we wake up each morning with choices that are ours alone.  And that makes every morning one of Thanksgiving.

Let’s make no mistake…t’s our choice to stay at a job, stay in a relationship, stay in a certain body…It’s our choice to stay or go, end or start, jump in or avoid.

Although we are good at them and maybe, even, people will buy them, our arguments and reasoning and excuses and justifications really don’t fool anyone.

In the end, we can spend our whole lives finding ways to be angry and bitter and miserable and slighted and disrespected and wronged.  If we look hard enough and with the right bias, with the right angle, with the right sneer….we will find something to reinforce what we choose to believe.

It’s up to us if we choose to believe in Thanksgiving.  If we choose to wear it and speak it and live it and breathe it.

Thanksgiving is an optimism and a faith that is stronger than any lesser evidence.  Any smaller distractions.  Any tired tendencies.  Any aged beliefs.

Let’s choose to make Thanksgiving not a moment of turkey in the afternoon.  But, rather, a morning that is full of choices.  Choices gifted to us by another day.  Any day.  Every day.

Every day of Thanksgiving.

October 12, 2014

Let’s Put Our Heads Together

Filed under: Uncategorized — karaswanson @ 10:46 am

Most of you are familiar with the common problem of sleep dysfunction after TBI. When our brains slow down and begin to trudge through the muck, we are forced to shut them down and recharge. Often they don’t have an entire day’s worth of energy and efficiency in them so many of us take naps and a lot of us find ourselves up and about during the quiet hours of the night. Many times howling at the moon or, at the very least, playing games on Facebook. ;)

On many occasions around the country when I have keynoted a speech on brain injury, I have found fellow survivors in the lobby the night before at all hours. It is a delicious secret (not any more!) that we have enjoyed story-telling and camaraderie and even the rare sing-a-long at those hotels with lobby pianos in them.

On one such night many years ago, I went to the front desk to get some change first before I joined my tribe. The survivors were all huddled and sharing something fun and funny and I was smiling, watching them from afar. A hotel employee, not realizing I was one of THEM, said, “Yeah, they put their heads together and not a whole lot happens….”

Insert curse words here.

For those of you who have followed my blogs and heard my speeches or downloadable Fork Bytes, you, no doubt, have heard me talk about my uber-strong belief that the best way to not feel disabled any longer is to do for others. The best way to not slip under the waves of having people always helping you is to help someone else. The best way to stop feeling sorry for ourselves is to go out and find others who need our help.

It’s time to put our heads together.

Over the years I’ve seen TV ads for charities which boast that, if you pledge $29.99 a month to help this group or that, they will send you a beautiful sweatshirt. A hat. A gorgeous tote bag. A lovely calendar….

I have always bristled at that. Why don’t they save the money from the flippin’ tote bags and use all the money given to actually help the cause these generous people are donating to?

Lately in the news I’ve seen a few reports where charities have been uncovered and discovered as having misused donations. Some in mind-boggling, criminal fashion. There was one that was actually putting just three cents of every dollar donated toward the cause while the foundation’s leaders lived lavish lives and laughed all the way to the bank.

When you find out how many of your dollars actually DON’T house the homeless or comfort the sick animals or shoe the children or clean the water or warm the disaster victims, you become hesitant to drop that change in the container or write that check and understandably so.

It’s time we put our heads together.

Breast Cancer Month has become, strangely and incredibly, fun. It is fun for so many because pink is fun. Pink is fun on coffee cups and ribbons on sweatshirts. Pink is fun when baseball players use pink bats and football players come out in pink shoes and pink wristbands and there are pink charity walks and charity runs and we all feel good about ourselves.

Breast Cancer Month gets a lot of play and it should. Breast cancer affects everyone because everyone knows some precious “gals.” Their own, their mom’s, their wife’s, their sister’s…

We gotta save the boobs. Gotta save the gals and all the glorious women who sport them.

But, make no mistake, breast cancer is not fun. There’s a whole reality beyond the pretty pink ribbons…

The other night was like a perfect evening with glorious food and friends watching a God-given sunset by the sparkling water. Everything came together and it was magic. It felt right. And I knew entirely that this was a great opportunity for all of us survivors and everyone who supports us to make a real difference. To step out from underneath the label of the disabled by helping someone else. To feel empowered and strong and helpful and valid and active.

It was a great opportunity to put our heads together and soar.

I’ve known Christine Benjamin for more than 25 years. She is a breast cancer survivor who has watched many of her family and friends battle, survive and, too, succumb to this terrible bastard of a disease.

Although she has dedicated a good part of her life to helping those with breast cancer, she’s got a lion’s heart. From the time I was injured and all through these twenty years now, she has shown up in countless ways and on countless days, helping and giving and encouraging and taking care of me.

She’s a plum and I respect and love her dearly.

Here’s where we come in…

We, the ones who many think no longer count. We, the ones who are mocked and giggled at from aside a hotel lobby in the middle of the night. We, the ones who have to be helped and often provided for. We, the ones with the damaged pumpkins, the soft pears…

It’s time to put our heads together and ROCK THIS LIFE!!!!!

Let’s shed that coat of the disabled and feel how wonderful it is to help others. Let’s stop fearing where our donations might end up and make them go to a responsible group that actually digs in and helps people. Let’s show solidarity to the women battling breast cancer by saying, “Hey, we’re here to help. We salute you and we support you and we want you to be here tomorrow!!!!!”

Christine is the Director of a group in New York which actually helps people. They work out of a modest space. They don’t funnel donations to lavish vacations. They don’t take your dollars and drive them away in Jaguars you help to buy.

No.

They put their heads together too.

With seventeen employees, only six working full time, they dig in and they help real people with real problems. All of their supportive services are provided by people who have faced breast and ovarian cancers and who have been specially trained to offer counsel, compassion and direction. They bring in physicians and researchers and practitioners to offer webinars for people all over the country. People who need to feel empowered by information and options during a crucial time when, so often, they lose hope. People who have had their lives turned upside down like a snow globe after some dreadful and scary-as-hell diagnosis.

People whose plights we can appreciate.

You can donate to this group and know your money is actually making a real difference. All of it. A dollar. Ten dollars. Whatever.

You aren’t going to get a tote bag. You’re not going to get a calendar. Nobody’s going to start calling you every week to give them more money.

This is one moment. One moment when the marriage of two powerful groups of people can do extraordinary things together. We have the opportunity to step outside ourselves. To be the ones helping for a change. To target a disease that affects all of us.

Better than a tote bag any day.

I know you guys. I’ve known you for twenty years now. Let’s knock this out of the park. Let’s show the women fighting breast and ovarian cancers that we over here in the pumpkin patch have fabulous powers! That we stand beside them and cheer them because we understand what it’s like to survive something that knocks our worlds sideways.

That hotel employee who thought that, when we put our heads together nothing happens????

Let’s show them what we’re capable of. Send a dollar. Send a few. Know it means something. Know it wields a power so intimate that it will actually help someone who needs your help. Our help. Together. What could be more important than that?

Christine is going to make sure that all of our donations go to something special and specific and I’ll report back in a month and tell you exactly how your donation helped. Actually helped someone real.

This is exciting for me and I hope you’ll join in. Put a note in it to Christine that says, “Kara’s friends are putting their heads together” and send it in care of:

Christine Benjamin LMSW
Breast Cancer Program Director

SHARE
1501 Broadway, Suite 704A
New York, NY 10036

http://www.sharecancersupport.org

Thank you for joining me in this. This blog reaches around the world and I know that the hearts and hands of the wounded can move mountains. Let’s move mountains. I love you guys!

August 9, 2014

Just What We Got

Filed under: Uncategorized — karaswanson @ 10:03 am

When I was first brain injured, it felt so extraordinary because I had just turned 31. It seemed awfully young to have your whole life turned upside down and it was devastating. Nobody around me had a brain injury, that I knew of. Nobody really knew much about such things.

I think a lot of us feel that way. Singled out, maybe. Cast into some sick spotlight. Sentenced cruelly.

While time certainly does NOT heal all wounds, it does gift us perspective, if we are open to the offering.

Eighteen years and some spare change later, what I realize is that age is a wise old friend with deep pockets….

I look around me and, oh my, everyone got something. Geez. People tackle their days with so many things. Lugging them. Bearing them. Incorporating them. Defeating them. Accepting them. Battling them.

I realize now that this isn’t so extraordinary, after all.

It’s just what we got.

Some people got dead children and some people got sexually-molesting fathers. Some people got screaming arthritis and others got Lupus.

Some got pinched nerves in their necks while others got bad backs. Some got fierce depression and then there are the ones with cancer.

I look over there and he’s in a wheelchair. She’s got a worker dog helping. He’s got home nursing care. She has canes for every outfit.

This guy has splintered fractures in his spine. That woman needs oxygen to get up the stairs. This one here has failing kidneys and that one is waiting for a heart transplant. The one over there has painful MS so she rarely leaves the house and that one has knees the size of football helmets.

This is just what we got.

There is maybe the argument that there are people walking around with nothing (those lucky rotten bastards!!!! LOL)

But that is not the case. Everyone has something. Coming or going.

This is just what we got.

Those seemingly perfect people with all the good looks and all the full pockets and all the fancy houses and all the gorgeous bodies…

Some are hiding early symptoms of Alzheimer’s while some have hidden depression or eating disorders or drinking struggles for years.

Some are about to get into their cars and drive into crashes and off roads and back into their small children on the driveway.

Some will board planes that crash and others will hide bruises from abusive spouses. Some will spend short lives waging wars and others will live sixty years incarcerated for a murder they didn’t commit.

This is just what we got.

Let’s see the world and all her beauty, for those whose eyes have gone dim. Let’s hear the world and her music, for those whose ears no longer receive sound. Let’s walk for those whose legs are paralyzed, dance for those whose balance and dizziness cannot tolerate movement. Let’s look forward for those who can only manage to go back. Let’s shine warm, wonderful light for those screaming silently in darkness.

This is what we got. And, like everyone on the planet before us and still to come, it will kick up its heels and it will make some things more challenging and it will change our lives in ways we didn’t invite.

But….

Like those who run on prosthetic legs and those who dance from wheelchairs….Like those who emerge from abusive childhoods to foster loving families…Like those who are homeless but still manage to get college degrees…Like those who, despite WHAT THEY GOT, get up, get out and refuse to be conquered..

Let’s take what we got and go enjoy the day. Let’s make bright the world around us. Let’s, with our lousy memories, give our loved ones someone so warm and generous that they won’t soon forget.

Let’s take what we got and go and rock this world. Our world.

The one we got.

July 14, 2014

Let’s Fix Forward

Filed under: Uncategorized — karaswanson @ 8:04 pm

So many discussions on brain injury are centered around what has already happened. Well, that makes sense. We talk about and write about and blog about and even bitch about the damage we’ve endured from injuries suffered to our brains.

When I go out to speak, in many of my blogs, and in my Fork Bytes audio downloads, my focus is increasingly about moving on and heading forward.

A lot of that is just the natural commentary of my life. It’s been 18 years now since I was brain injured and a lot has happened since then.

I have moved on and thank God for that. I’m in a super place now. I’ve created a second life after injury that accommodates the symptoms that never healed and I’ve found ways to be successful in many jobs and activities. I am in a great relationship, I have great friends and family. I’m truly in a terrific place.

One of the inspirations for any of us to emerge from a brain-injury-consumed life was highlighted today in the news and I couldn’t wait to share it.

My brother is an eye doctor and I’m so proud as punch of him. Over the years, he has developed a keen expertise in disease detection. Not just in the eye but using the eye as, literally, a window to our well-being.

Today, all over the news, reports came out that there is exciting confidence in an eye doctor’s ability to perform routine eye exams which can detect brain plaques, an early marker of Alzheimer’s disease.

This is exciting news because this early detection could come YEARS before any symptoms show up, allowing a patient to get further testing and enjoy earlier medications which could prolong their cognitive health.

In recent years there’s been a lot of impressive research linking brain injury to a higher incidence of Alzheimer’s and dementia.

Now, I happen to think that sucks.

For those of us with brain injuries, we should automatically be disqualified from any future damage or disease to our poor peanuts. I mean, geez, really? That’s a bit of piling on, don’t ya think?

One of my dearest friends (Happy Birthday, Kim!) turned 50 the other day and her birthday always makes mine six months away. I’ll be turning fifty six months from now and I’m already acutely aware of the changes that aging is taunting me with.

I feel an increasing urgency in the belief that we really need to get our engines all firing as hot and high as we can and soon. If there is a higher incidence of cognitive problems for those who have suffered previous head trauma, then we all have to realize that the battle is not yet over.

It might simply be the calm eye of the storm.

There is an exciting new research result out of Finland that finally proves right all the blah blah blah our doctors have been droning on and on about for years.

Ha.

Two groups of aging people were watched for several years. The one group followed a healthy nutrition plan, increased their physical activity, improved their cardiovascular health, regularly socialized and engaged in brain games.

The results were encouraging and exciting. They proved that, indeed, we CAN DO SOMETHING to protect our brains and keep more of our futures bright.

It’s conflicting news for the brain injured who, by necessity, often rely on routine and dependable activities to help create ability. What I’m suggesting now is that we need to do more. Our of our norm. Out of our element. Out of the box.

We need to create safe environments which encourage and nurture new activities and talents. We need to learn again and still and constantly. We need to challenge ourselves, to surprise ourselves, to walk down the halls of our minds and blow open those doors and flip on those light switches.

All of us.

Yes, we may be war-weary warriors but I find it hard to imagine a fight more important to stand up for. Many of us have spent years cursing our brains for what they forget, for what they mess up, for what they fail to do.

I submit it’s time to raise up those precious peanuts of ours. To celebrate them and cherish them and feed them. Arm them.

It’s time to get busy learning new things. Learn a new language and music is a language itself so pick up that tarnished trombone in the basement, go buy a harmonica, find an old banjo at a garage sale.

And let’s rock!

We can do something positive for our brains. Something that can help us, not only rise out of the past that often shackles us, but something that propels us into a positive future that we can actually affect.

Let’s learn how to polka. Let’s watch movies with subtitles. Let’s eat brain foods and improve our cardiovascular health. Let’s put ourselves through brain happy boot camp and come out the other side ready to wage war on Alzheimer’s and dementia.

I want to be writing this blog when I’m six months from turning eighty. Will you be able to read it?

June 14, 2014

Damaged Brains: In The End, It All Ties In With Fathers’ Day

Filed under: Uncategorized — karaswanson @ 1:06 pm

We tend to think of Traumatic Brain Injury as my injury…as so many others…

The insult, assault and damage left behind after a car crash, a beating, a shaken baby, and any of the thousands of ways people’s lives have been so catastrophically changed when their mighty, precious, spectacular brains are hurt.

But I’ve been thinking about more subtle brain damage…

In the wake of statistics this past week revealing that, since the Sandy Hook school shooting, the United States has averaged roughly one school shooting a week.  A week?????  Could this be possibly true?

Stops you in your tracks.

The other night I went to watch my nephew play ball.  He’s at an age now where the kids pitch and there are more walks than hits and probably more runs due to errant throws.  But you can see, each summer when they return, that they stand a little taller.  Their throws are a little stronger.  Their swings are more purposeful.  They are getting it.  They are ball players. 

As I watched the game, my niece was off with her friends.  She returned from time to time, perfect in her tie-dyed shirt and dirt-covered shorts. They threw baseballs and kicked soccer balls and giggled and ran.

The night was as perfect as can be.  What we knew and what they still know.  And should.

Innocence.

Safe innocence.

As I’m sure many of you have, I’ve wondered often how, in recent years, gun violence has infiltrated our society with alarming results.  It feels very real, very scary and very close.

This topic makes its way into a blog about brain damage because brain damage makes us not think the same.  Not think as we did.  Not think as intended.

I believe that brains working well and in a healthy way do not conjure up shooting as an answer to any of the problems we are seeing on the news each night:  a failed love affair, a lost job, a lousy school experience, an item wanted… 

There’s a lot of people out there not thinking right and I wonder why their brains are damaged.

It’s too easy to blame.  We blame a different society.  We blame computer games and violence on TV.  We blame gun rights’ activists.  We blame little leagues where every kid gets a trophy.  We blame social media.

We do a lot of blaming.

They do a lot of aiming.

I watched television and movie characters shoot guns as a kid.  I was made fun of though, thankfully, not often.  I was molested for years and the most of the cutest boys never looked my way…

But it never occurred to me to shoot any of them and, if you put fifty guns in my house right now, I would simply ask you to remove them.  I don’t want any part of them.  They scare the bejesus out of me.

The frequency of gun violence is so alarming and so disturbing because, it seems, there isn’t a code anymore.  Nobody plays by logical rules.  There used to be certain places for guns and none of them were in schools, on the playground, in students’ backpacks, in fights between supposedly loving people…

Parents usually make their way to me and seek me out after something has changed.  Something often dramatic that has left symptoms and new tendencies.

I submit that maybe it’s time we all start thinking that something has changed in all of our lives.  In all of their brains.

You would look for symptoms if your child struck their head after a fall or in a game or after a car accident.  Maybe it’s time now to take one step further and see if their brains have been damaged by desperation, misguided thinking, hopelessness, naivite, or impulsivity.

After all of these mass shootings, people go back and find clues and hints and changed behaviors that now make sense.  Moments they didn’t realize were symptoms.  Subtle actions they didn’t realize were screaming red flags.

We all know someone trying to remake their own childhood through their kids.  They dress like their teenage daughter.  They hang out with teenagers or turn their affections towards them.  They get way too involved in their kids’ little league game to the point where it’s no longer the kid’s experience-it’s the parent’s.  There’s a lot of examples…

I think we need to stop living our childhoods and start living theirs.

Our childhoods don’t look much like that of the kids of today and it’s up to us to stop just lamenting, stop simply blaming, and get busy saving these kids.

Saving them from brain damage.

There’s no helmet against desperation.  It’s time we stop teaching them simply how it used to be and start learning from them how it really is.  Their symptoms are there.  They are.  A kid who loads a weapon and takes it to a public place and starts murdering innocent people didn’t just arrive at that point the second they started pulling the trigger.

It’s Fathers’ Day weekend and we are safe in the simple, comfortable traditions of neckties and barbeques.

But there are a lot of people out there who aren’t going to celebrate being a dad or having a dad when some damaged person went and shot their loved one to death in a mind-boggling surprise.

Let’s get small.  Let’s stop blaming all these big things and get really small around us.  There’s no use in teaching them how to live in a world that no longer exists. Let’s use this great big Internet to research behavioral changes and desperation and hopelessness.  Let’s learn from these young people about guns.  Not our understanding.  Not our interpretation.  Theirs!!!  Let’s talk with them a thousand times and more about real life and how it is different than what they see in games and on TV.  Not once.  Not assuming they know. 

Like the thousands of brain injury survivors who have come my way and told their story, let’s stop thinking it can’t happen to me.  To us.  In our neighborhood.  In our schools.  It’s not enough just to ban our kids from anything.   It doesn’t matter if you refuse to have weapons in your house if you don’t realize your kid’s best friend has access to a case full of rifles.

We weren’t told once as little kids that we need to look first before crossing the street.  It was pounded into our heads.  Over and over.

Let’s not cheat any of these kids by continuing to think, “My kid wouldn’t do that.”  They need more from us.  They need us to step up our game and get them to adulthood.

Let’s save them.  Let’s save them for all these dads out there who want a bad tie and a hamburger on the grill this weekend.

Let’s identify symptoms of brain damage that doesn’t come only after a header in a soccer game.  Let’s treat this changing world, this changing society, the same way we’d look at a blow to the head.

People thinking clearly, in a loving, hopeful, healthy way, do NOT load guns and blow people away.  Let’s treat the brain damage spreading silently before it’s too late.

My brother deserves a great Father’s Day every year of his life.  So do all of the fabulous dads out there.  A chance, too, to honor and remember those, like mine, who passed down great tools to successfully live by before they had to go.

Let’s do more than blame.  Let’s do more than just hope it doesn’t happen or pray it doesn’t happen.  Let’s do more than just curse the Internet and lifelike games.

Let’s not look back after it’s already too late.  Let’s look forward before it is.

 

 

 

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.

April 22, 2014

Dare to Imagine

Filed under: Uncategorized — karaswanson @ 7:50 am

I see video replay of the families and loved ones of the missing Malaysian triple-seven, screaming in anguish and frustration after more than a month with no debris field and no tangible return on the tireless efforts to find that plane. 

I have watched coverage of the sunken South Korean Ferry and the seemingly endless parade of the dead, carried on stretchers from the grave of hundreds.  Information there is posted on a white board about each victim for the families to identify:  braces, nail polish, birth marks, clothing…

I think of the families in Washington State who suffered that massive mudslide a month ago.  My thoughts turn to the loved ones of the lost souls on Mt. Everest this week….

And I don’t know how there is so much hatred in this world of ours.  So many lines drawn in the sand.  So many borders.  So many fences….

If you dare to imagine the plight of these people, all around the globe, it is another invitation to bring us closer. To bond over inarguable circumstance. It doesn’t matter what color they are.  What language they speak.  What political party they belong to.

When I imagine a dead child who was swept away by a mudslide….a young Sherpa climber buried by a sheet of ice five stories high…a South Korean high school student slowly descending into the dark and cold sea, any person in the frantic last moments of a plane crash…

It makes me weep to imagine.

We needed the Boston Marathon yesterday.  A year after that horrific bombing which sent shockwaves felt across an entire planet, we needed that marathon to run and run they did. 

A million people showed up to defy darkness.  To cheer and clap and prod on, not only the runners, but the very spirit of light.  Of recovery.  Of good.

There’s not a one of the million-plus gathered in Boston who didn’t take a few moments to fear and wonder and look around and take a deep breath and consider and pray.

But they came anyway.  They beat back their fears and they demanded the light and the light came.

It gives me chills to imagine. 

Last week a student was found possessing a firearm and six bullets at the high school where I work and where I went to school.  My school.  My friends.  My co-workers.  My community. 

That incident stole a little of the innocence I have always enjoyed there.  That young man took a bit of the carefree fun I enjoy when I announce sporting events.  He brought fear to school.  He brought reality to my school which, before this, had enjoyed the naïve denial of the untouched. The fortunate others.
What I’ve realized is that we don’t have to move unchanged from one horrific headline to the next and the new. To move on unchanged is to turn away the opportunity to bridge distance and make smaller a world that is so gloomy with division.
When we dare to imagine what anyone feels, even that poor soul on the side of the road with the flat tire in 19 degree weather, we plant the seeds of a compassion that emerges from the rocky soil of contempt. Of hatred and prejudice and bullying and meanness. In a world so desperate for the blooming of new hope and warmth, we need only look at each day’s headlines to see how urgent this need.
Let’s take a few moments from our crazy, busy days to feel that dark cold water in our minds. To imagine how enormous a sheet of ice five stories high is. Let’s reserve just a bit of our time to appreciate a mudslide that rushes into a home and fills it five feet high. Let’s sit with the visual of that teenager last week, sitting in a classroom with kids like your own. A gun and bullets in his backpack…
If that isn’t a bell toll begging for change then I am at a loss for what could be. Time and again we have watched with distanced amazement at what goes on in the chaotic world around us. Let’s bring it home in our minds, before it comes home and shows up on our doorstep. Let’s imagine what has been so that we might change what will be.
Our lives right now, our time here…Our period…This is ours. This is our place, together. Whatever and whomever, the good and the bad, we will, together, move into the history books. One at a time, our contributions, whatever they were, will go silent.
Let’s give ’em light. Let’s rattle the cages of the good. Let’s imagine the cold darkness so that we are inspired and compelled to the warm and the right.
Let’s outnumber the ones who make this world such a scary place that a teenager is sitting in third hour with a gun and bullets in his backpack.
No one else can do it. We are all we have.

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