Delicious Distractions

For most of us with TBI, distractions are so derailing in terms of our efficiency and ability to execute daily to-dos that keep us “in the game” with our people and our lives. For me, spontenaity and last-minute changes and plans that go haywire often throw me into a tailspin and it’s hard to recover.

While distractions can derail and topple and zig-zag us off our carefully-planned game, they can also be a blessed gift of relief from all the effort it takes to function in our TBI worlds.

Right now, most of us are distracted by Christmas doings and, for most of us in the United States, we are distracted by the horrific weather that is a challenge at so many turns.

But I am harkened by the distractions.

What???!!!!

Most of us, after we are hurt, long for a normal we no longer have access to. We lament those days before, often with grief and anger that stubbornly keeps.

Soooo…when I find that I am side-tracked by last-minute Christmas things and when I realize that we are all trying to bundle up against minus-20 wind chills with 50mph gusts, I smile a little beneath my 17 scarves.

I remind myself that these are the delicious distractions of the normal and I am grateful. It is a reminder that we will always be way more than this injury. Way better in so many ways!

I wish you all a Merry Everything. Whatever holidays, traditions, and moments you seek and treasure, may they be bountiful and fill your hearts.

May there be delicious distractions that remind you of how wonderfully normal we are, whatever that means. Laughing here.

Please keep safe and warm and healthy. Please enjoy more moments of smiles and love and joy than you can count.

Merry Christmas! Love you.

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Sanity-Saving Tips To Keep The THANKS In Thanksgiving

Even for the salty veteran, pulling off the full Thanksgiving Day feast takes planning and patience, good rest and a sense of humor. Over the many decades of Thanksgiving meals, there have been countless funny (and not so funny) stories of people trying to pull off the GREAT THANKSGIVING DAY FEAST for their families and friends.

Fire Departments in every city, town and village ready for those of us who think that deep-frying our turkeys or grilling them or “trying something new” with the smoker out back will be such a great idea. On Thanksgiving Day, there will be those who cook the turkey with the bag of innards left inside, those who didn’t thaw it in time, and those whose turkeys are still not finished by the time the guests are drunk and dozing.

Throwing a brain injury into the mix is like throwing a cat into a warm bath. It’s probably going to get messy and leave a few wounds.

I’ve been cooking the family’s feast, in one version or another, for all of the 26 years since my brain injury. I have learned some tricks along the way and thought I’d share:

If you are a guest going to someone’s house, make sure the directions and whatever you are bringing are doable, affordable, and easy for you. Decide beforehand what you might be able to bring and offer that in advance. Be specific. Can I bring the rolls? How many do you need and what kind are your favorite? I would like to bring a pie. What kind do you still need?

Better yet, you might offer to bring a case of water or the Thanksgiving napkins so you can buy them early and leave them in the trunk.

Ask your host when the meal is expected to be served. Don’t waste your cognitive fuel by showing up at 1 if they aren’t serving until 5. Drive yourself so you don’t get stuck there should you need to escape.

For those of you choosing to cook the meal, there are great sanity-savers to help you survive the day so you can enjoy it, too!

Consider these:

Make your lists when you are quiet and well-rested. Shop at odd hours so you don’t feel overwhelmed at the store in the crush of the rush. Better yet, send family members with a list so you can preserve your cognitive fuel. If you are hosting guests and they offer to bring something, give them something to bring! They will likely be happy to help.

Cut the menu as much as you can. No one needs 13 separate vegetable dishes. Set the table the night before and cover it with Saran Wrap. Cook as many items as you can the day before. There is nothing wrong with leftovers on the day of the feast.

Give your guests a start and end time. Make it work for you. Are you better early? Do you think you might need all day to pull it off? Think about you and how you succeed best. Make sure you get good sleep the night before.

If you have a busy house full of kids and stimuli, prepare them beforehand. My Mom used to make us pumpkin muffins in the morning and then send everyone to the Lions’ football game so she could have the kitchen to herself. We didn’t dare go near the kitchen until she called us in.

Delegate kids and spouse, if you have them, or trusted guests, to take coats and cover the drinks for the whole show. If you want, tell guests to bring their own drinks. Put out to-go containers and let them fix their own. Enlist family members to help clean up after.

Take quiet time for yourself, before and after. Don’t feel like you have to entertain people at midnight when you fed them at four. Excuse yourself and go find some quiet.

When I was in high-end catering, I was concerned with starching my napkins and folding them into swans or candlesticks. I had all the correct wine glasses and perfect wine choices, matching decorations and candles. Each dish was wonderfully garnished…

Now, the menu is pretty basic. The ornate settings have given way to us sitting in front of the TV to watch the Lions’ game. Even after 26 years of doing this, there are still those moments when this dish is done long before that one, and some of the meal comes out 20 minutes after the rest.

For me, the Thanksgivings, even when they have become more modest and efficient, they still warm deep in my heart. I am grateful for long-cherished family traditions, especially from those who no longer can be with us. I am grateful I am still here and able to do this, 26 years after my brain injury. I am grateful that the list of things I am grateful for would leave the food to get cold if I started naming them.

Happy Thanksgiving, all. Wishing you a wonderful holiday, however it fills you with good things.

They Made The Best Of It

I have long found the story of Her Majesty, Queen Elizabeth II and her husband, Prince Phillip, Duke of Edinburgh to be inspiring.

On the surface, they had everything you could ever want in a worldly life from butlers and caretakers and people to dress you and people to do the cleaning and other everyday chores that most of the rest of us slog through.

But, beneath that thick layer of royal opulence, I have always found a story that rang true to those of us who, too, know what it’s like to lose their life’s plans.

I think of the late Queen, growing up, enjoying the relative carefree life of a princess who would never be tossed into the daunting responsibility of wearing the crown. Her uncle was King and, with that, she was set to live a life, albeit privileged, filled with many of her own freedoms and choices.

King abdicates thrown. Elizabeth’s father becomes King. All of a sudden, Elizabeth is inserted into the fast track of succession and her life is set for her. When her father died at a relatively young age, Elizabeth saw her entire life’s personal hopes and plans fall away.

Enter Queen Elizabeth’s husband, Prince Philip, Duke of Edinburgh…This man was a rising star! He was well-educated and scored high in all his class rankings. He was named to this prestigious post and that, often a surprising climb for his age. He was planning and anticipating a highly-decorated, successful career in the Royal Navy.

Then, BOOM!

Elizabeth accepts the Crown and Prince Philip becomes the husband of the Queen of England. She was told that her every move would be dictated by centuries of precedent. He was told that his every move would be for his wife, his Queen, and that his career was over.

What do you do then?

As most of us with significant TBI know well, there is a stunning shock when life and life’s plan run full speed into the concrete wall of Fate. It is an uncommon cruelty when you realize how much can change in an instant.

Many will look at the Royal Family and shed no tears when they live with such extravagance and luxury. But, for me, there has always been a respect for how the Queen and Prince Philip “got on with it.”

The Queen, famously, kept her passions of horses and Corgis alive by stealing off to Balmoral to enjoy time in nature and time away from the strict confines of her Duty. Prince Philip, who reportedly struggled mightily with the sharp curtailing of his personal life and ambition, ended up carving out his own place by, for example, bringing technology into the Royal life.

While these brain injuries toss over our lives and upend them in massive explosions, it is important to remember that we are not sniveling victims, weak and lost and shuddering.

We are flippin’ warriors!

We “get on with it” like the countless who, similarly, rise to meet tomorrow after the slate has been washed clear with ruin.

Like soldiers returning from war with no legs…like the woman or man who loses a spouse and now has to figure out life with three children…and yes, like the young couple whose life plans and dreams were snatched in the instant a King died young.

Brain injury does not end life for the survivors. It does not end life for the living. It’s up to us to ensure it does not end living for the alive.

Let’s get on with it.

Let’s dream new dreams and try new things. Let’s assess, take stock and then move forward. No one ever won a future waiting for a past to return.

When we are lucky to be alive, let’s honor that by writing a fabulous, fun, and successful story.

Heck, Let’s All Go Back To School!

Boy, I can recall so vividly…Starting back to school in September in Michigan. It was still very warm. The school clothes that were purchased for me were way too warm to wear in September but I remember not wanting to go back to school in summer clothes. I would wear whatever new school clothes my folks had purchased for me and then sweat like heck because I was dressed for October. All the neighborhood kids came bouncing down the steps of the school bus and here comes old Swanson like some kind of Nanook of the North! LOL.

I can recall when I started 7th grade, I figured I needed a purse. Apparently I was oblivious to fashion because the only purses I knew were the ones my Mom and Aunts and Mom Neighbors carried. I remember buying one that was so big, too big, and I had nothing to put in it, really. That first day, I was carrying a purse with about a pound of tissues and probably 25 pens and pencils in it.

Here in Michigan, as the days shorten and the sun starts to lose its laser-like strength, the return of school has a certain, special feel, even for my now 40 years out.

What I didn’t fully appreciate back then and what I am grateful for now is that, all those years of school starts was the annual igniting of brain circuits. We didn’t even realize back then how all that new information, in various subjects, was lighting up our brain connections, making them robust and fertilizing them to grow.

Most of us, as we become pretty good at being adults, we stop learning as much as we should. Other things to do, I guess. Lord knows how busy we are!

But I sure believe in learning as a tool in successful brain injury recovery! I believe with all my being!

I try to research new things, learn new things…this week I read up on saltwater crocs in Australia that can grow to be 20 feet long and more than 2000 lbs. I watch documentaries to learn about different people and their accomplishments are inspiring. One time I learned about the rapper Bobby Brown and, though I’m not a fan of rap, I loved his story! I have learned about the origins of McDonald’s and the whale oil industry of the 1800s.

I think of our brains as rooms in our body’s attic. I imagine how there are bulbs everywhere up there. As I get further and further from my injury, I realize how important it is to keep checking which bulbs have burned out and where I might click some new ones on.

If we don’t click on new ones and only allow the normal ones to burn out, at some point we will be left in the dark.

Let’s all keep turning on new bulbs! Let’s remind ourselves and each other to keep learning, to keep feeding our brilliant machines.

It’s September and the school buses are shining up, tuning up. There are new pencils and pretty folders to buy. Rows and rows of notebook paper, staplers and rulers and backpacks.

It’s an exciting time. Let’s join the fun!!!

What I’m Noticing, Now…

I was injured when I was 31. Back then I was near the top of my game in terms of how physical capability compliments and works with mental sharpness. Not the incredible athleticism of youth and not the wonderful wisdom of older age. But right there, at 31, it was tough to have to start so much from scratch.

What I’m noticing now, though, at 57….More and more, the people in my life and of my generation (and older), are recognizing changes in their own abilities and skills that I powered through 26 years ago.

It’s not the same, no. Those of us with cognitive-related challenges will bristle when someone says, “Oh, I forget where my keys are all the time!” and they think they understand brain injury. They do not, nor should they. And we never want them to understand this!

But, what comes with age, perhaps and hopefully, is a coming struggle that we still think the same and expect bodies to react the same, even when they cannot.

More and more, I hear my people reporting how they are forgetting things and they don’t want to be driving at night anymore. They are falling and hurting themselves more. They don’t have the same tolerance for loud noise or pitches that are too high or too many people at a party.

Sound familiar?

As more people in my life “see” me in ways I needed to be seen 26 years ago, I find myself really trying to see them now. There is a kindness there that is soft and real. There is a community there that is warm and comforting. There is a true camaraderie, one that we have enjoyed in the brain injury community amongst those similarly injured.

It makes me feel great love for my peeps. There is something very true about it and I feel it deeply.

As all of us get older or for those of you watching parents and other loved ones get older, there are tools our community has long-utilized to ease the bumpy patches of cognitive and physical decline/damage. It’s a wonderful feeling for me and I hope it will be for you, too. To share what we’ve learned. To help along the way.

If you have aging parents in your life, or aging loved ones, please offer the good you have learned from your brain injury experience. There are so many but a few stick out for me:

Nobody needs to fall! Keep an eye out at your folks’ house for small, slippery rugs. Tighten those stair railings for them. See if they are open to a railing and/or a bench in their shower. Encourage them not to be talking on the phone when they are carrying in groceries. Encourage them to always have one hand free. Talk about how you and your siblings might relieve your folks of having to shovel the snow from now on. Take turns helping them out with lawncare or weed pulling or bush trimming. Find a way to eliminate their need to get up on a ladder and clean the gutters.

My alternative-vocational therapist taught me, all those years ago, that memory challenges are the easiest ones to overcome because everything we need to recall is right at our fingertips. I love that advice. We don’t need to fuss and stress over all we can’t recall when we can look things up, make lists, set reminders on our phones, have Siri or Alexa remind us….

Maybe ask your parents if they are struggling with things that your experience has taught you how to overcome.

If you are having family events, make sure you aren’t asking your parents to drive home late at night. Move the events to earlier. If you are asking them to watch your kids, go pick those kids up instead of expecting your parents to drive them home after an exhausting time.

USE your hard-won battles to help those in your life struggle less and keep safe. There can be no better outcome from all the hardships you have overcome than to help those you love not have to struggle in the same ways.

Go rock the world, you awesome warriors!!!!

The Joining

Too often, when someone suffers a traumatic brain injury, lines begin to be drawn, almost immediately.

In a couple where, before the injury, roles were set and power was given from each to the one, there is an imbalance now. A brown-out from one of the power sources.

Many couples find that their dynamic duo suddenly is divided in icky, unhealthy ways: the healthy one and the one who is injured, the one who is getting up and going to work every morning and the one staying home, the one making all the money and the one who cannot, the caretaker and the sick one, the one who can’t tolerate all the prior couple’s activities and routines and demands and the one who misses them…

Imbalance is easily survivable whenever life dumps new demands on one of the pair and the other is left “holding up the fort.” Couples do it all the time. Think of the couple where one is a football coach and s/he works ungodly hours during football season. Or the woman travels for work and her partner “holds down the fort” when she is away on business. There is the pregnant woman. There is the man with the knee replacement. Her Mother gets sick. His company lets him go.

Every couple suffers imbalance at some time or another.

While it is true that an astounding number of couples do not survive a significant brain injury happening to their coupledom, there are ways to blur the new divide and enjoy having both partners move in the same direction.

1. Look for the signs-Is your partner getting irritable, impatient, tired of hearing about your brain injury? Is he/she telling you that you should be over it by now? Is he/she rolling eyes or tuning you out? Is he/she staying later at work, going out more without you?
2. Has it been a year or more? Are the therapies done? Have your doctors basically run out of things to try to help you improve?
3. Has your partner stopped asking about the injury? Has he/she stopped doing the things that helped in the beginning?

Countless couples suffer a destructive plateau when healing stalls and survivors are lost in some kind of la la land where you don’t know how long anything is going to last and you aren’t sure if you should try to work, pursue disability, keep trying other doctors, keep waiting….

If you and your partner are experiencing this very common phase of brain injury damage to your relationship, it’s important to jump on the opportunity to stop the losses and get busy with the saving.

Understand first that your partner has also suffered this injury and he/she is sad and scared and concerned and unsure about what to expect and what to hope for. That is a real component of this injury.

If you haven’t already, begin a dialogue about where you are at and initiate a plan that you can do together that will help alleviate stress and fear and imbalance. The two of you can work together to conserve cognitive fuel each day, giving your household more of your best you by really looking at your everyday routines and working to cut out any chaos or multiple stimuli or unnecessary plans changes and all the other things that steal your cognitive fuel each day. Discuss financial concerns and really figure, together, if you need to scale back your lifestyle, sell the house or new car, or what might reduce financial stress. Talk about how to plug the holes that you once handled in terms of running the kids here and there, taking care of elderly parents or handling the bills. After an injury, you cannot do everything yet and your partner might not be able, or willing, to pick up every slack.

Ask him/her what he/she is missing about your lives from before the injury and start figuring out, together, how to reclaim some of that. Even just hopeful glimpses, hints and bits of before. Go on a date. Stop always talking about the injury and, instead, dive into what he/she is interested in or doing at work. If you used to meet couples at the bar every Thursday, go for an hour. Drive separately so you can come home when need be. If you used to go on mega vacations with all sorts of side trips and extravagant plans, make a quiet weekend at a cabin instead. A tiny piece of gold is still gold.

As time goes by, it’s critical that we start knocking our brain injuries down a few pegs. From a solid number one at the top, we need to start replacing it with those things from our former lives that we don’t want to lose. What is it for you that you can put above brain injury? Your partner? Your kids? Your friends or your dog or cat? Your fun life and your work life?

Brain injury will always take the top spot at the start. It is a commanding, demanding bugger. But, as soon as you can, please start knocking it down the line and down the list. Write down what was most important to you before you were hurt and focus on that each day. How can you invest in each of those priorities, even just a little? How you can you show those people you care and are interested? How can you help them? It may not be as much as you gave before but give a little each day. Make that a priority to help outside of the injury.

Our loved ones will never need us to be perfect. In case you didn’t know, we weren’t perfect before we were hurt. Ha. They don’t even need us to carry everything we did before.

But they need us to be able to join them, enlist them, re-partner with them, teach them, love them and have fun with them. They need us to be part of what’s important to them.

If we lose everything we loved before we got hurt, then the injury wins. Don’t let that happen. Reclaim what you love. Rename what you love as part of your successful recovery. Part of your victory over this injury. Resolving every symptom might not happen but that doesn’t mean you can’t beat this bugger. You can! And a big part of that is by knocking it down a few pegs, giving it less and less time and attention each day, and looking outside to help heal your inside.

You know I am cheering for you. xo

Love the Steal

I love it when I can steal and share thoughts and quotes by people more clever or wiser than I am…

I saw an episode of Blue Bloods recently and Grandpa was talking about aging and memory and compensatory techniques. When I heard on of his lines, it made me smile. I have been doing the same thing since I was hurt 26 years ago. Wanted to share…

In the episode of Blue Bloods, Grandpa told his grandson that, every morning, he awakes and recites his Social Security Number, former Badge Number, etc. So helpful!

Even those without a brain injury can likely commiserate with how easy it is to forget the myriad passwords, bank card numbers, and clue answers we have to muddle through each day just to access accounts, use an ATM, get through our phones, etc.

I learned the hard way many years ago when I was locked out of my PayPal account because I couldn’t recall the answers to my security questions. I thought, “Of course I will remember those!”

LOLOLOLOL

When it came to answering, I was locked out. Was my first car a Chevy? A Nova? A Chevy Nova?

Good God.

Since then, I regularly test myself, like Grandpa on Blue Bloods. I will recite my SS#, my driver’s license #, my bank passwords and number codes. I will recite the names of my elementary school teachers or mentally picture the homes in my childhood neighborhood and name the families I grew up with. I will spell the long names of friends I have or try to name all our states.

Every day.

I think of it as propping the doors open. Keeping the doors of my brain open and accessible.

I had a Great Aunt. Her name was Helen. Loved that woman. I recall asking her what her first husband’s name was and, in her late 70s, she told me she couldn’t recall. I thought that was really funny at the time.

Not so much, anymore.

They say “use it or lose it” and, if you are around my age, you know how true that is when it comes to muscle strenght.

But our brains need that exercise too! We need to keep turning on the lamps in all the cells of our brains where all our glorious information is stored. Keep breathing life into all the far reaches and corners or our wonderful working machines.

Hope this finds everyone well. Wishing all the Moms out there a Happy Mother’s Day weekend. Missing my Mom. Take care. xo

After March Madness

Any college hoops fans out there? For those who don’t know, March Madness is the term for the NCAA men’s and women’s basketball tournaments each year. They are an exciting, one-and-done format grouped in arenas around the country that end up crowning the men’s and women’s National Champions.

While there are exciting stories of Cinderella teams going on improbable runs and knocking out higher-seeded teams, back stories on extraordinary young men and women realizing their dreams, brackets played in families, offices and in betting sites all around the country, there is also…

Terrible heartbreak and heartache.

When a team loses, they often show the losing bench as time ticks down and the winners celebrate and get ready to move on. The losing team, often filled with tearful seniors, realizes their season is over, just like that.

I watch March Madness each year. I always think of us.

Most of us suffered injuries that closed down our familiar lives in a second. Just like that. Over. Done.

Like those seniors who have lived chosen, structured, familiar lives of their choosing, everything changes in an instant.

I’ve often thought about those seniors and I gain inspiration from them. What did they do after they took off that jersey for the final time? What did they do after that long plane ride and bus trip home? What did they do the next day after they cleaned out their lockers and there was no practice to plan for, no more games, no more…

They suffered some, surely. Tears were shed. I’ll bet there was a transition time when they didn’t quite know what to do with themselves when, for often four years, their schedules had been set.

For the successful ones, they allowed that sting to lessen. They allowed those tears to dry. They began to fill that practice time and those game days with different things. Some finished up degrees. Some trained for the upcoming professional draft. Some started wondering what the heck NEXT looks like, now that it had arrived.

You don’t hear about all of them, just like we don’t hear about how everyone with a brain injury moved on. Those who lost partners or children, lost jobs, lost important things.

I know that many struggle and I hope they find themselves here one day, realizing they aren’t alone in the new. The unfamiliar next.

Wherever you find yourself today, I hope you know that there are a bunch of us cheering for you. The next chapter is a lot of things-shocking, sad, confusing, painful…But the best thing is that the next chapter is yours.

Wishing all of you a great door to walk through after all of our Madness.

Precious Time

One of the great ways I found to boost my recovery was to really look at how much time my brain injury was actually consuming each day. By targeting those prickly, stubborn symptoms, I was able to reduce the amount of time I spent ACTIVELY being brain injured.

We begin these brain injury journeys in shocking places. Sometimes in an ER, sometimes in our homes or work places. On the ground under a large tree. On a sports playing surface. At the hand of a an angry domestic partner…

Brain injury is like some big, thick blanket of darkness at the beginning. It encompasses everything, seemingly. It affects all of our routines and work/play lives, our thinking, our financial situations, our loved ones, our choices.

As days turn to weeks and then months, most of us find that our injuries are very isolating. Our people move on, needing to. The acute emergency of our injuries falls back some, replaced by new news and developments, world events and the twists and turns of our loved ones’ lives.

It is difficult to maintain momentum when, often, answers are spare and therapies are, at best, just a little help. For many of us, we don’t even realize that we begin to recover BECAUSE we fail to heal. We begin to recover because we need or want to do something and it is important enough to execute in a new way, a different way than before.

Successful recovery ends up our ability to reduce the hours when our injury is befuddling us, taunting us, frustrating us and breaking our hearts.

My recovery has been successful because I reduced and reduced until my injury no longer kidnapped my days. To be honest, I don’t think of it much any more, especially in terms of how it prevents me. I am like my old self because I fail and succeed, I soar and fall, I choose wisely and not so wisely…I am like my old self, just a different version. Fatter, surely. Ha. But better in so many ways!

As you navigate your own recovery, see if you can pinpoint how much time the injury actually gobbles up of your day and target that. It might be emotional outbursts and impulsivity. It might be the short-term memory challenges. It might be the headaches or the cognitive fatigue.

If you can target each time-stealing part of your injury, like a fire to put out, you will claim back more and more of your days. Instead of thinking of your injury as this gigantic monster that ruined everything, try to think of it as smaller, as only able to damage/challenge parts of your whole. Then pick one for Spring and do your brain injury Spring Cleaning. 🙂

As we Spring Forward on our clocks, let’s Spring Forward in our recoveries. This is our time. Our precious time. Whether you can tackle the emotion outbursts by choosing therapy and talking with your doc about any new med possibilities…or whether you might finally stop relying on a faulty memory system and get your schedule into a day planner…or whether you might rearrange your schedule and begin to insert naps and downtime to help stave off cognitive fatigue…

Spring Forward! Let’s take back some hours each day where brain injury has been holding our time hostage. It’s precious time. Our time.

Inspired By Olympics

I love watching the Olympics, the winter games, especially. Each time I think I’m “not into it this time” but then I get drawn to the athletes, their stories and will and spirit and resilience.

It is magnetic and intoxifying and inspiring.

I don’t watch the Olympics to remind me of what I cannot do any longer. Instead, I listen for the stories of these powerful people. Their unlikely stories of triumph.

I think about them and how they have fallen, skidded, shorted, over-leaned and tipped millions of times. In private and on the stage before billions. They have been bruised and broken and sprained. They have been heartbroken and humiliated.

Yet here they are.

Some changed sports because they didn’t have the money to keep paying for equipment or training. Some failed badly or lost by a whisker in one, two, five Olympics before this. Some were counted out. Some couldn’t shoulder the pressure.

Yet here they are.

While most would say they are the best of us, I have come to see them as all of us. We may not have sequins on our costumes and Lord only knows I could never do a triple toe loop in my livingroom with pillows attached to my limbs…

But we have fallen, and skidded. We have shorted and over-leaned and tipped. We have been bruised and broken and sprained. We have been heartbroken and humiliated.

Yet here we are.