Kara Swanson's Brain Injury Blog

April 14, 2019

Where Is The Best Of You?

Filed under: Uncategorized — karaswanson @ 10:55 am

Most of us in the brain-injured community think that, without quibble, the best of us can be found pre-injury.  Back in the day….

We speak with sad fondness and some with sharp anger, still, of better days and better ways we enjoyed before these injuries plucked us from our fabulous and deposited us here, where find ourselves.

I recognize this “yesteryear longing” in my friends and loved ones who, only now, are old enough to recognize the fading and sagging and softening and blurring of aging bodies and minds.

Not to be a fly in the butter here but I think everyone’s wrong.

You were never more important than you are today.  Never more powerful and capable to affect the world around you.  Never more gifted the opportunity to imprint and impart good upon this world and to and through the loved ones in your life.

To be honest, no one much cares who we were back then, anymore than they care to hear yellowed stories from the so many who wish to replay their glory days of high school or college fame on stages and fields and courts and in classrooms.

Anyone who has glory days to recall are fortunate and good for them.  Those memories and stories and faded news clippings will feed egos for a lifetime.

But for us, any of us, brain injury or not, who we used to be isn’t going to help around the house today.  It’s not going to help our kids with their math homework or their confusion about sex or their golf swing or jump shot.  Who we were back then isn’t going to teach a proud son how to tie a tie or how to fill a tire with air.  It’s not going to help a daughter with her Spelling Bee words or her curveball or the confusing ways that boys are acting now.

All that good and better we used to be isn’t going to rub the tired shoulders or draw the warm bath for that partner who is so stressed and weary because he or she is carrying an extra load now.  It’s not going to clean the house or do the laundry or lighten the load in any way.

That’s for the us of today.

The people around us, the ones we love most, don’t care so much anymore of any long-fading glories.  When life is racing by in chaotic, noisy, changing households, the glory we have to give…need to give….is the glory of the day.

The glory of today.

Our loved ones don’t care that we can’t do what we did twenty years ago or ten years ago or two.  They want to know that we are joining today.  That we are battling with them. That we are sharing and reducing their loads, their stresses, their demands.

Our kids, our parents, our partners, our friends….they already know what we must learn as quickly as we can:

The person we left back there can’t help today.

But we can.

We can help today.

Can you spend a little time outside yourself?  Outside of this.  The loss and the anger.  Can you spend some time with them and for them, being NOT the person you loved before.  But, instead, being the person they might want to love again tomorrow?

For most of us, the bar is not set as high as we fear it.  The demands are not as great as we imagine them to be.

It’s simply about asking, “How can I help?”  “What do you need?”  “Is there something I can do?”

Makes all the difference.

If you can choose that…If you can choose now…

Then the best of you is right here.  Today and tomorrow and, God help us, the day after that.

That’s the truth.  That’s our truth.

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March 22, 2019

“You’re Crippled…Get Used To It!”

Filed under: Uncategorized — karaswanson @ 8:00 am

“You’re crippled.  Get used to it!”  With all the uncountable things I’ve forgotten, that comment, said to me by a balance specialist more than twenty years ago, stays.

I wept in his office that day.  He abruptly left after proclaiming what he did.  His nurse came in and held me while I cried.  She apologized for him.

I have never forgotten.

Over the years I have realized the truth in it.  Yes, his delivery was disgusting.  His utter lack of compassion was appalling.   But, by definition, crippled means “unable to walk or move properly” and that is true.

What I also took from that moment was significant in my successful recovery.

For one, a doctor gives you his diagnosis, his prognosis, his best guess, his opinion based on your facts and his experience.   Some will prove true and some won’t.  Some diagnoses will beat us and some we will overcome.

But it is simply a capturing of a moment.  One that can change in a million ways.  It is up to us to respond.  To apply.  To investigate.  To try and prove false.  To continue to create a better outcome than we are sentenced with.  To get other opinions.  To try more than we’ve tried.  To try differently.  To change, as we have to.

In my mind, I am not crippled at all.

The other significant thing that that moment, crying in his office, taught me….was that we can avoid many many hurt feelings when we choose wisely the sources from which and from whom we seek compassion and understanding.

Survivors have told me for more than twenty years how they are so devastated that their spouses or their kids or their parents or doctors don’t understand what they are going through.

How could they?

We cannot keep hitting our heads against the wall, so to speak.  We cannot expect that a person without a brain injury would understand what it’s like to have a brain injury.

Yes, they can love us.  Yes, they can support us.  Yes, they can comfort us.  Yes, they can show compassion for our struggles.  But it’s not fair to them and it’s not fair to us to expect them to understand what this is like.   They simply cannot meet that need.

We go to a restaurant when we are hungry.  We go to a gym when we need to work out.  We go to a salon when we need a haircut.

You wouldn’t go to a priest for understanding of a troubled marriage.  You wouldn’t go to a middle schooler for understanding after you got a divorce or lost a child.  You wouldn’t go to a civilian for understanding of the nightmares of fighting war.

While they might have comfort, compassion, even sound counsel or guidance…they will not have understanding.

The people in our lives cannot be expected to give us what they don’t have and it’s not right for us to ask.

There are, sadly, countless people in our community in whom to seek understanding.  Support groups on Facebook.  Meeting groups in the community.  TBI Conferences…

Blogs by sexy gals eating cupcakes :)))))

Just please do not seek understanding from people who cannot gift it.  You can’t get your hair cut at a restaurant….Nobody needs the additional frustration or hardship or hurt feelings.

No, I won’t ever forget that time in that doctor’s office.   I wish I could remember where my keys are, instead.  But, for as much of a cad as he was and how cold he proved to be, I have sifted through it to find the good.  To make it mine.

What do they say?  Forget the pain;  Remember the lesson.

We will always welcome you here.   We will always meet you and greet you at the door with warm armfuls of understanding.

Happy Spring, everyone!!!

 

March 7, 2019

Up To Us

Filed under: Uncategorized — karaswanson @ 3:50 pm

Our stories will be written, with or without us.  By those we’ve impacted.  By those left behind.

Some will measure us in a simple timeline.  This is where we started.  We did this then.  We did this then.  We did this then…

Some will measure, instead, using deduction from evidence of how we spent our time, where we spent our money and with whom we chose to be with the most.

Some will measure us through a narrow lens of their personal experiences with us.  Who we were to them, what role we played and during what decade or time period we were in their lives.  They will sum us up through their own perceptions and with their particular biases and slants.

Many will decide they don’t care what anyone thinks or that, hell, they’ll be dead when all those judgements are passed.  True enough, that.

But for those of us who wish to write the stories of our lives….for those of us who wish to make clear the intentions and choices, high points and struggles…for those of us who wish to leave no doubt in those we feel most strongly about…

Then that’s a great starting point for brain injury recovery.   For any recovery.

I’ve heard so many people tell me how they fear being remembered just for their brain injury, just for their nasty divorce, just for their felony conviction, just for their cancer diagnosis, just for their dead child, just for their horrible weight gain, just for their addiction…

Just for their failure, just for their loss, just for their bad luck, just for cruel fate.

For each of us then, before we go and before we leave the end of the story to others, let’s ensure that there is no murky confusion.   Let’s clear up and clarify and decide and own.

We can say someday, someday….and they will report that, too.  We can dig heels in after disappointment, after being cheated, after being damaged.  We can sit with our anger, our indignance, our stubbornness, our pride.  We can build walls around us that keep out fear and danger and the chance of being hurt.

They will report that, too.

Or we can work to ensure that, no matter the measure and no matter the measurer, we will certain the outcome.  We will trust the stamp.  Because we chose good people around us who read more than the headlines.  Because we tried at good and, even when we failed, we tried at good.  That we made sure and certain that the ones most important to us knew, undeniably, how we cared for them and cheered for them, supported and loved them.

If it matters to you then don’t let bad be the last thing they see, the last they know, the last that they measure.  Not brain injury, not dark intentions, not unkind words, not cruel actions.

They WILL remember.  In some measure, in some way.  It’s up to us how important it is to have a hand in what’s written, to color the timelines, to warm the memories.  To put good, positive, memorable, fun, loving distance between the darkest of our hours and the brightest of our days.

 

 

 

 

 

 

 

 

March 6, 2019

Let Me Share a Secret….

Filed under: Uncategorized — karaswanson @ 1:39 pm

If any of you play computer games on Facebook or from some other gaming app, you know how addictive they can be.  I’ve been playing two specific games for years now and I’m almost embarrassed by how high my levels are.  LOL.

The one game is particularly enticing.  It invites me in with its bright colors and fun characters.  When I pass a level, it sings to me and sends me gifts and colors dance and rockets shoot off.   It’s fun.  It makes me feel good.

Sometimes I come across a real hard level.  A bugger.  I’ll try and try and it seems like, for the first couple dozen tries, I run out of lives or moves and I am not even halfway to the goal.  It is frustrating and I’ll roll my eyes and throw up my hands.  Sometimes I will “punish” the game by taking a few days off from it.  I’ll try to make it jealous by enjoying the bings and sings and flings and things from another game.

And then I return.

Little by little, I get better at those bugger levels.  Each new morning I am given  game tools to use for that level.  After a few days off, I return to many tools and, often then, I am able to whoop that level and move on.

Some of the levels are easy breezy.  I fly through four or five of them before I bump up against a new bugger level and I’m back to the frustration of it.

There have been times I have enlisted the help of my friend, Linda, because she and I are wired so differently.   She is a musician and a tech guru.  I am not blessed with prowess in either of those fields.  Sometimes, on a level that I have struggled with for a month, she can just click click click and it’s done.

Hmmmmm.

Sometimes, yes, there are swear words.

Through the several years now I’ve played it, the message repeats and is always the same.  Some levels will be easy.  Some levels will stop me for days, weeks and longer.  Some levels will need a differently-wired brain to go at it from a different viewpoint.  Some levels will require that I wait and seek out additional tools to help me meet that particular challenge.

And always, always, the feeling of progress and achievement and fun make me feel terrific and I return again.

Oh….and that secret I was going to share from the title of this blog entry?

The secret is:  That’s how successful recovery works after brain injury.  We keep at it.  We return again.  We take some time off when we need a break.  We return.  We enlist the tools available to meet the demands of harder levels.  We get help from people who think differently than us.  We celebrate our victories.  We enjoy the colors and the sounds and the gifts.

And we go at it again.

February 20, 2019

Installing Success

Filed under: Uncategorized — karaswanson @ 8:35 am

One of the reasons so many of us fail at New Year’s resolutions to lose weight is because, at that time of the year, most of our homes are still cluttered with leftover Christmas candy and New Year’s Day football bowl fun food.  For those of us in wintry states, New Year’s often arrives with blistering temps and unforgiving winds pushing perky salads aside in favor of more carb-heavy, comfort foods.  Soft, warm sweats and horror-covering parkas allow us a denial and avoidance that often hinder our weight loss efforts.

Most of us realize that, if we wanted to lose weight, we wouldn’t fill our fridges and our cupboards with Hostess Cupcakes, cookies, candies, donuts and cakes.  Similarly, if we planned to bring home a new puppy or kitten or tiny person, we would need to safe-proof the house to ensure that curious new baby didn’t get into trouble around stairwells, electrical sockets or adult ingestibles.

The same thinking is great for us after brain injury.

How are we setting up our homes and our schedules to bring out the best in our brain injury recovery?

I find that, often times, people who write to me with problems in the home for themselves or with a survivor often have not re-created their lives for success after brain injury.  By identifying good and bad triggers and installing appropriate activities, many of us enjoy marked progress in our every-day battles.

Someone has to get out of denial.  Whether it is the survivor or the people who care for him/her, there has to be a time when it is realized that the medical course of treatment has its limitations after brain injury.   For there to be continued progress, there has to be continued steps toward it.

How much is in the tank?  For most of us with brain injury, we suffer a significant loss of cognitive function on a daily basis when we have extended beyond our limits.  For me, I can be as sharp and as capable as anyone I know and then, once I hit my limit, I’m a stone.  That’s it.  All done.

Because I have been at this for more than twenty years, I know my triggers and my limits.  I know what zaps my cognitive energies and I can feel it when I’m slowing and when it’s time to get myself to a safe and quiet place.   Identifying limits and triggers is key when designing your successful life with brain injury.

Invest in the nest.   It’s key for the survivor and/or the caregiver/s to really look at the home situation and to assess how damaging it is to recovery success.   The survivor needs to be efficient with his/her competent time each day and then be able to rely on a quiet, safe space to recharge and recover.

Are there busy kids and excited dogs and lots of rooms blasting TVs and music?  Is the family routine chaotic and ever-changing?  Are there people dropping in and out all the time?  Is there a place for the survivor to retreat to?  A quiet, safe space?

A smart schedule is one of the best brain injury tools.   Most of us have smart, sharp cognitive time available to us.  Most of us have stone time when we have reached our limits and when we need to close it down and recharge.

Most of us don’t get it right all the time and that can invite stress in the home, friction in relationships and even dangerous situations.

I know I’m excellent early in the day.  I know that, if I have to announce two basketball games in the evening, I can’t do a lot of stimuli-laden activities during the day.  I know that, after a long holiday or visit or party, I will probably be a slog the next day.

The things we know and the way we use them to our advantage can help us design a plan and a place that works for us.   If the survivor is a student with early cognitive sharpness, then you choose college courses or the most difficult high school courses for early in the day.  Maybe you opt out of loud, busy gym courses or take care to schedule them at the end of the day.  You schedule in down time for a nap or rest right after the worst of any day to re-charge.

Don’t waste precious cognitive fuel on unimportant things:  For example…you waste cognitive fuel if you ask the survivor what they want for dinner.  For most of us, there are a million things to choose from and places to eat and we struggle to try and choose one.  Instead…conserve the cognitive fuel by asking the survivor, “How does chicken sound for dinner at six p.m.?”

Uncountable choices waste cognitive fuel.   Don’t ask the survivor, “What do you want to do today?” or “What are you in the mood for?”    These are little things but, by shaving off the waste, you can enjoy more cognitive sharpness each day.

Don’t waste cognitive fuel by subjecting the survivor to tons of stimuli, changing plans, unreliable schedules or pop-up activities.  Although some cannot be avoided, it can’t be a way of life for someone trying to improve their recovery.

Many of us get frustrated when the medical side of recovery stops.   It is frustrating and, often, scary.   We have to start looking at that time (if we haven’t before then) and realize it’s our time to step up and step in and keep the recovery moving.

Successful brain injury recovery invites us to think outside the box and to choose what works over what, maybe, everyone else thinks is normal or what we have done before.  Maybe the college student needs to get out of the dorm and into a studio apartment.  Maybe the adult survivor can “create more fuel” by working at home or going to the gym during off hours or shopping from home on-line.

I save cognitive fuel by living alone and keeping a quiet nest.  I do my swim laps late at night to avoid noisy gyms.  I shop on line instead of fighting crowds at malls.  I take myself to parties and events so that I can leave when I need to.  I get up early and do my important work and plan my schedules when I am rested, quiet and thinking clearly.  Sometimes I cook big batches of food to last for many meals so I don’t have to waste cognitive fuel three times a day trying to figure out what to eat.

Trim the waste and gather the fuel.

Shaking off denial, getting to know the survivor’s “fuel tank” and when cognitive efficiency is at a high, designing the home, removing the fuel waste and structuring the schedule to make use of high cognitive time with rest and recovery periods to follow will all help the survivor thrive.

Medical treatment ends.  It does.  But recovery success does not have to.  That’s up to us.  We can continue to make things better.  We can do this!!!!!!!

 

February 4, 2019

Vulnerability

Filed under: Uncategorized — karaswanson @ 4:35 pm

Seems we don’t talk enough about this aspect of brain injury…

Many of us, after being hurt, experience a vulnerability that we didn’t suffer before.

It can be scary.

When we are first hurt, we are overwhelmed with the injury and its implications and aftermath.  We are consumed with new symptoms and a frustrating lack of urgency in their healing.  We are flooded with the losses coming at us with break-neck speed:  abilities, jobs, relationships, plans…

The sense of vulnerability usually comes when we’ve healed some, enough to stretch our wings a bit and try to reclaim some of our previous normal.

Suddenly, we realize that we may be at risk for any number of reasons:

We aren’t thinking right so we may make plans that are not realistic or safe when we are now less than sharp and when most of us suffer a shortage in cognitive fuel.

Our memories often fail us and so we don’t always recall if we made the plans with all our best interests in mind.  Did we plan right?  Did we make lists?  Did we cover our backs?  Did we prioritize our safety?

I can tell that, in my own life, I have improved in many ways over the last twenty-plus years I’ve dealt with my injury.  But, as these years fly, I also am made more aware of my feelings of vulnerability when you add that I am a woman and I am getting older.

I don’t want to become scared of things.  Scared of life…So it’s important to me that I shine up my smart and overcome my vulnerabilities with really smart choices:

I make sure that I make plans when I am relaxed and rested.  I take care to plan events beforehand by picturing it and by writing out a time-frame from shower to returning home safe.  I tell trusted people my plan so that, in case I’m not reading it right, I can depend on them to point out things I might have missed.  I pack a “go bag” in my car with my meds, extra clothes and supplies in case ANYTHING happens that I didn’t see coming.  I arm myself with a whistle on my key chain, pepper spray in my car, a tool to protect myself in my car, a charged cellphone and a charger to take along.  I text people when I’m leaving and when I return home safe.

We have more to consider-as we get older, for those of us who are women, and as brain injury survivors.  We don’t have to get scared but we need to get smarter as we go.

Keep soaring, everyone!  Keep doing new and doing you and getting through.  Just be safe and smart.   I’m cheering for you.  Kara

January 26, 2019

What is the past, really?

Filed under: Uncategorized — karaswanson @ 3:04 pm

For so many of us with brain injury, the past is this magical, mystical perfect that we keep and treasure and allow to haunt us.   It is that wonderful time in our lives, pre-injury, when the future seemed bright and the days were full of promise.  Tomorrow seemed to go on forever and we believed that our futures held only better, no matter what they would prove to be.

They were certain to gift with endless days of love and success and pudding and giggles.

Although our paths are drastically different than those without brain injury, we are not nearly rare in our keeping of the past.  For anyone whose life didn’t quite work out how they’d hoped, that feeling of childhood and of a carefree-before-now too often saddens.  Too often is missed.

To me the past is, seemingly, another life.  A different time.  One with vibrant abilities and dogs and a climbing career.  One with parents and others who I miss now.

But the loss of those yesteryears does not make me angry.  I don’t feel cheated.  I am simply grateful to have enjoyed them when, for so many others, they did not know the more-common happiness of carefree youth.

I did.

For me, the past unfolds like chapters in an amazing book.  Maybe that is the writer in me….But it has helped me to move on after all of my hardships and disappointments to look at life this way.

Maybe it could help you too?

For the so many of us who struggle to find answers as to why we were so cruelly sentenced by such a horrific injury, I look to the past to soothe and to ease, not to taunt and to haunt.

In the past lies the answer to many and any of our questions, whether we have a brain injury or not.  It tells us how we got here, wherever we are in life.  For the countless who are unhappy and who are struggling, the past tells us why.   A simple gift but one that we often overlook.

The past tells us how we ended up brain injured.  It tells us how we ended up married to some abuser.  It tells us how we ended up homeless or addicted or in prison or, more hopefully, how we ended up satisfied, successful, in love or enjoying families or jobs that we adore.

The past is not meant to torture.  It is meant to gift us with information, with knowing, with perspective.  Enough to invest….

In our futures.

We can love our pasts  but it’s so important that we don’t allow ourselves to prefer them.  That is our challenge.  That is the gauntlet thrown down before us.

Because, if we prefer our pasts, we stop hoping for better futures.  We stop writing new chapters.  We stop improving and evolving and making new.

Life might not end then.  But living sure does.

Chapters are meant to end.  New chapters are meant to start.  We are not meant to be who we were at nine, at eighteen, at twenty-seven.  Brain injuries come.  Parents go.  Kids arrive.  Spouses leave.   Jobs start.  Projects finish.  Hopes start.  Dreams die.

I don’t pity those of us with brain injury.   I have seen uncountable numbers of you, of us, take these monster injuries and create happy, wonderful lives.  Successful ones.  Kinder ones.  Generous ones.  Ones to admire.

Everyone carries moments from their pasts whether they are injuries, diseases, children, spouses, prison sentences, regrets, mistakes…

The secret is simply to invest our pasts.  Deposit the lessons learned from them into our futures.  To take them and use them as informative and gift-giving and life-saving.  To make us better.  To make us kinder and more compassionate and peaceful.

To make us better human beings.

A good writer will always do research.   S/he will always take what there is to know and create from that.  Make new from that.

That is our mandate.  Our mission.  To take what we know and create from that.  Make new from that.

When we do that, we will thank the past for its gifts as we write exciting new chapters in our lives.

January 6, 2019

The Key To Change Is Replacement

Filed under: Uncategorized — karaswanson @ 1:39 pm

I was thinking yesterday that, wow, I really have evolved when it comes to media and how I use it.  I was binge-watching a Netflix Original Series via Roku and I had to laugh at myself because I’ve never really been on the cutting edge of anything when it comes to media.

Binge-watching my show last night came on a streaming carrier.  Before that there was recording and DVR-ing and Blue Ray watching.  Before that there was just cable and running to the corner to score new releases of videos to watch for the weekend.  Before that was (and, yes, I’m old enough to remember) the introduction of the remote control.  Even before that, there was actually getting up and going up to the TV and manually turning the channel for the six or nine stations we received.

Very few of us now are still manually changing channels on some old tube TV and watching a dozen air channels.   Very few of us are still watching videos that slide into DVD players.   Even though there have been challenges along the way with new technology and trying to navigate through all the new-tech options and trying to afford all the new tech toys that keep emerging, most of us have found new ways we can actually manage and afford and enjoy.   We are comfortably standing on one of the many steps between first and latest.

Similarly, phones have evolved in such dramatic ways that it’s hard to really appreciate just how far we have come in such a short time.  Thirty years ago we were excited to have big clunky answering machines and we were delighted when Caller ID came along.  We cheered mobile phones and, eventually, cell phones.  From flip-phones to Qwerty keyboards to smart phones.  From one centralized wall  or corded phone to phones in our ears and on our wrists.

Why aren’t more people sitting at home still manually changing their twelve air channels and rotary-dialing their loved ones on land lines?

Because the changes created better.  Because they made life easier.   Because we were able to enjoy more options.  Because it was fun.

Nobody can force anyone to join in the new age of technology.  It’s nobody’s business if we choose to refuse all the new options and to keep watching our familiar shows that first-aired forty and fifty years ago in black and white.   It’s nobody’s business if we prefer an old fold-open map or an actual Yellow Pages or a camera that still uses film.

But we have to understand then….We have to accept then….

That we won’t hear from many of our loved ones who communicate only via texting and who don’t even answer or talk on their phones any longer.  That we will miss a lot of our loved ones’ lives who communicate and share their lives only on Facebook, Twitter or with email.

We can’t blame them for choosing tomorrow.  We can’t expect that they will.

When we face the hard recoveries of brain injury or of any of life’s most challenging trials, the key to embracing change is to find better and more enjoyable and make-life-easier replacements.    The replacements are the key.

Nobody would have chosen to replace rotary dial phones with two Dixie Cups and a string between them.

In this New Year, in this next year of your recovery process, I wish for you doors that open.  Views that widen.  Color that sharpens.  Sounds that clear.

No one is asking us to give up our rotary phones and then, the next day, take the helm as the CEO of Apple.

But maybe this new year doesn’t have to be the same as all of the parts of so many past years that have hurt.   Meds change.  Strategies change.  Incentives change.  Perspectives change.   When so many of us have convinced ourselves that we are this or that we are that, perhaps this new year will prove us wrong.  Surprise and delight us.  Perhaps it will reveal a brain that has healed some, a new way of easing, a few strategies that don’t feel so awful to embrace.   Maybe we can open ourselves up to new reasons for trying again and trying new.

If we can turn on our TVs and find three hundred choices of what show to watch, maybe we can consider the possibility that there are a hundred times more than that of people to meet, things to learn, ways to try, moments to share, music to hear, things to see, options to consider and tomorrows to shape.

Happy New Year, everyone.  Love you.  Kara  🙂

 

 

December 24, 2018

Sometimes Just a Slice is Perfect…

Filed under: Uncategorized — karaswanson @ 10:37 am

Picture your favorite cake or pie.  Warm out of the oven.  Fresh and delicious…Yum.

Having a slice of your favorite cake or dessert is a great thing to enjoy for most of us.  One of life’s simple joys…

But not many of us would sit down and eat the entire cake or pie in one sitting.  It would be too much.  It would make us feel terrible.  It would lose what was perfect about it in the first place.

Christmas celebrations can be like that.

Most of us condense and entire year’s worth of shopping and visiting and eating and gathering, all into one month.  We are shoving down that whole cake like there is no choice.

We can make a choice.

With brain injuries, particularly, it’s hard as heck for most of us to navigate the holiday season.  Most of us are just hanging on, just trying to get through it.  Kind of takes the joy out of something when you feel like you are just trying to survive it.

While most kids have been making their Christmas lists, I’ve been getting through my holiday prep with new lists each day, too.  I feel sane today.  Relaxed and peaceful.

When you get ready to tackle these next days of holiday rush and fun, remember that family traditions were made, likely, before you had a brain injury.  They were made by people, likely, who didn’t suffer from brain injury.

The traditions and plans may need a little tweaking in order for you to fully participate and enjoy them.

When you picture your family and holiday plans, try to picture you in them and see how that’s all going to work out.  How can you plan so that you can be a favorite part of your favorite parts?

There are no rules that say you have to stay X amount of hours anywhere.  That is probably key for most of us.  When we know how hard it is to hang for long long party or gathering hours, focus on how you can create a scenario that works for you so that you can be safe and enjoy a measure of time that works for you.

I’ve already typed up my list for today.  I start at the bottom with when I have to leave for my traditional Christmas Eve party and I work back.  I put in every hour backwards:  shower, pack the car, clean the car out, wrap the presents, wash the outfit, make the list, have the morning coffee…..

If we plan our day and make our schedule when we are rested and quiet and at our best, we can rely on that schedule all day to assure us that we are OK.

For me, I used to visit several parties or gatherings, here and there.  That was long ago.  Run here, stop there….It was all too much.  Now my plans are very modest and I enjoy them so much more!

Don’t forget to schedule in some down time, alone time, rest time…whatever helps you stay on top of your game.  It’s as important as a diabetic remembering to eat small meals throughout the day or someone with high blood pressure planning to pack meds for the long day.

It’s what all of us do in our particular situations.

As lives change, as injuries come, as loved ones go….our holidays change and it’s OK that they don’t look like what we were taught to duplicate from holiday commercials and Christmas shows.  Some people cannot tolerate noise or gatherings or they don’t have family around or their gatherings are toxic and unhealthy for them….

Christmas success is up to you.  Plan for it and make it yours.  Whatever it looks like to others, it only matters that you carve out your version of safe, happy, and peaceful.

It is your Christmas and sometimes just a slice is the perfect amount.

I wish all of you the best holiday time, right up and through a New Year that I hope will delight and surprise you with all your wildest dreams coming true.  Warmest wishes to all of you in however you celebrate and whatever you call it.   Let it be a season of peace and happiness and good light.

Love, Kara

December 6, 2018

Just a Few Words About Doctors

Filed under: Uncategorized — karaswanson @ 3:12 pm

I have been well-blessed for having been the beneficiary of wonderful, caring and invested doctors after my brain injury and, really, throughout my life.  But I came across an article today in our local news because, for many of us after brain injury, we are throwing all of our hope and faith into our doctors’ ability to fix our brains:

Six doctors were charged in an unsealed indictment Thursday with cheating Medicare and Medicaid out of almost $500 million and fueling the nation’s opioid epidemic by illegally prescribing more than 13 million doses of prescription pain medication.

While this is one case of gone-wrong doctors amidst a sea of mostly honorable and wonderful ones, it is a reminder that we have to take charge of our care and that of the parents and children we are responsible for.  Whether it is our case after brain injury, our parents needing to find competent and compassionate assistive care or our kids being trusted to pediatricians, it is up to us to take control of all that we can in order to avoid the dangers of darker care-providers.

It was mainly the blind trust in doctors which kept any one of dozens of people from unmasking and stopping Dr. Larry Nassar from molesting hundreds of gymnasts and other athletes under his care.  We have all read horror stories of this doctor or that.

Doctors are people.  And, as much as most are wonderful and caring, there are the darker ones who are distracted, uncaring, in it just for the paycheck or just plain dangerous.

Invest in your care and that of your loved ones.   Get second opinions.   Ask questions.  Do research, even when you annoy them with what you found on the Internet.  Ha.

Please take Kara yourselves.

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