The passage of time after brain injury

BY: MARK KONING

Time flies over us, but leaves its shadow behind. ~ Nathaniel Hawthorne

Being a brain injury survivor sometimes feels as though I have both lost and gained time. My injury occurred when I was six-years-old, and it is as if those first six years of my life have been erased. (It is hard to say for certain, because, well, I was six.)

Screen Shot 2017-03-24 at 2.23.51 PM
PHOTO: MARK KONING

I have some ideas of what things were like in my early years, mostly because my Oma (Grandma) shot many home movies and my mom took tons of pictures, plus all the stories I’ve heard along the way. It’s hard to tell what is my own memory, and what has been planted there by someone else.

It wasn’t until many, many years later, that I was diagnosed with an acquired brain injury. (You can learn more about that in my memoir ‘Challenging Barriers & Walking the Path’)

Growing up without the knowledge that I had an ABI, but at the same time sensing something was wrong, I often wonder if I spent too much time questioning things or if I was spared certain other anxieties. Ignorance is bliss, right?

Regardless of my past, I can say this about my present: while I might seem to have enough time to get things done, I do not. I do pretty well, but there are things on my list that don’t get checked off. No matter how much I have trained my brain, and knowing my need to slow down, it can still be frustrating to not get stuff done!

My accommodation for work, and life in general, is needing extra time.

In some ways, taking things slow and affording yourself more time is good, but I still only have 24 hours in a day like everyone else. You see? Frustrating!! I do what I do with the time I have, just like we all do.

I feel pretty lucky, regardless of time; and I still cherish it all. As much as I may need things to slow down, taking things at a calm pace allows me to appreciate those little things I think sometimes tend to get forgotten or taken for granted.

For those of us who have come to appreciate a cautious approach to life offer a unique ability for the serene. ~ Mark Koning #challengingbarriers

Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com
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Planned structure: why it’s important post-ABI + 8 tips getting started

BY: CELIA M

One of the many things we lose during recovery from an ABI is structure in our day-to-day routines.

daily-routine-quote-john-c-maxwell
PHOTO: RESILIENTISTA.COM

While rehab and specialist appointments may maintain a facsimile of structure to your day or week, what are you doing with the rest of your time?  Have you fallen into a routine of sleeping the morning away, followed by an afternoon marathon of talk shows, soaps and game shows? Does your wardrobe consist of pajamas or sweat pants? By supper time do you start thinking about all the ‘things’ you should have done – only now you are beyond tired, and you remember you didn’t really eat anything (does a chocolate and left over pizza count?), and you’re now counting down the time until you move from your sofa to your bed – only to start the cycle again tomorrow? Unless of course there is a medical appointment you need to attend.

This type of day I call unplanned structurein the early days of recovery you went from bed to medical/rehab appointments and back to bed, because that’s all your body and brain could handle. Over time, this became unplanned structure, as it was easier to do nothing than to think and make a decision about how you were going to carry out an activity, which may take more planning now than before you acquired a brain injury.

Know, I’m not judging. I‘ve lived this, but I’m here to let you in on a little secret – planned structure is key to getting back to adding more fun and enjoyment into your day.

For many people the word structure can conjure up visons of rigidity, being controlled, or being stuck in a boring routine. But structure can be a very powerful tool to help you get back to functioning on a regular basis and enjoying life. When you have structure in your life you know ‘what’s next’, which enables you to get on with your day. As ABI-survivors we can use up valuable energy trying to figure out what to do next. We might not do anything because we can’t decide or figure out what to do.

In the early years of recovery from ABI, I too was against structure, just ask my rehab girl Catherine. My reasoning was that I couldn’t predict what my energy level was going to be on any given day, so why plan anything? This left me doing nothing most of the time.

I also wanted to feel like I had control over my own day. Boy, was I wrong! When I finally gave planning structure a try – with the caveat that it was OK to re-schedule an activity if I didn’t have the energy for it (without guilt, or feeling like a failure) – it was such a liberating feeling!

Planned structure became my ticket to freedom, independence and a sense of accomplishment. Knowing what came next in my day helped reduce my daily struggle with anxiety and stress. I made sure there was always built in rest time between activities, and the more I repeated an activity on a regular basis the more it became a habit. My brain started to automatically know ‘what’s next’, and before I knew it I was doing my morning grooming without having to stop and think about it.

I’m not going to sugar coat it – it takes time, and some things will continue to need to be written down (that is a post for another day) but, know that each small step (no matter how trivial and small it may seem) will get you to where you want to be, living life to its fullest no matter what your new abilities may be.

When our food, exercise and sleep patterns are consistent our body and brain function better. This makes it possible to enjoy not only the tasks we need to do but to enjoy activities we like and try new activities too.

small-changes-in-daily-routine-quote-sharif-nor
PHOTO:  QUOTE BY SHARIFAH NOR

Benefits of structure

  • You know ‘what’s next’ and don’t waste energy thinking about what to do next
  • You habituate a new task or behavior
  • Automates activities in your day
  • You feel more in control being able to enjoy  your day and your life

Eight tips that helped me add planned structure into my day that included activities to make my day and life more enjoyable

  • A regular wake up time
  • Morning rituals to prepare for the day ahead (showering, dressing, breakfast etc.)
  • Fitness activities (walking, stretching, gym, yoga etc.)
  • Meal times
  • Leisure time (hobbies, ‘you’ time, a nap, etc.)
  • Time with family and friends
  • Evening rituals to prepare your mind and body for rest (unplug from computers, television 1-2 hours before your bedtime;  read a book, have a bath, meditate/pray, etc.)
  • A regular bedtime

NOTE: there will be times where you will need to add your daily structured planned activities around your medical / rehab needs, and there will be times that you will be able to add your medical rehab appointments around the things you enjoy in life. With patience and time you will find balance between the two – this is when the magic of planned structure happens.

excellence-is-not-an-act-but-a-habit-quote-aristotle
PHOTO: RESILIENTISTA.COM

Bonus Tips

  • Allow for flexibility, especially on days you find your energy supply low
  • Its ok to add/remove activities as your likes change
  • Seek the help of a rehab team member, friend/family member, or psychologist in creating your daily structured plan if you are not sure how to get started.

Today, I have more enjoyment in my days and life in general because; I have created a daily structured plan that works for me.  I encourage you to give adding structure to your day a chance. And let’s not tell Catherine that she was right about structure, that will be our little secret. ☺

Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; Self-care advocate; Lifestyle writer/blogger.  In 2016 Celia launched the website Resilientista to inspire women to put themselves in their day, practice self-care on the daily and live their version of a High Heeled Life. Learn more about Celia and be inspired: visit http://www.HighHeeledLife.com or http://www.Resilientista.com

We love Celia! You can catch her at our next Community  Meeting on October 24th, where she’ll help us put inspiration into action at an Inspiration Board workshop

New moon rises at the mindful art workshop

The following is a personal account from a participant who attended one of occupational therapist, Amee Le’s, mindfulness art workshops for persons with acquired brain injury. With the exception of Le, names of the participants have been changed.

You can find out more about Le’s workshops by visiting her blog, mindfulartabi.com

BY: AMANDA

I am sitting with a few people in the Northern Distrct Library on a Thursday afternoon. The room is half the size of a basketball court, and covered with a grey carpet. There is a central island formed by four rectangular tables, and close to the entrance, several juice bottles and two baskets of energy bars are waiting on the welcome table. The room looks quite empty with five big windows overlooking the busy Yonge and Eglinton intersection.

printed card hanging from a flowerWe all look ‘normal’, or at least most of us do not look like we have a disability. One person is in a wheelchair, and another has a twisted hand.

I am wearing a silky pencil skirt and a white blouse with three-quarter sleeves. Shirley has her red bike helmet on the ground by her chair, just like she did last month when I first attended this workshop.

Kitty, with small curly blonde hair gives each of us name tags. I can’t see them clearly without my glasses, but I remember some of the faces from last time. Karen is in an orange dress. Sandra, in the wheelchair, has a colourful outfit on. Kent has a perfect smile, and is not shy at all. Lydia is tall with dark brown hair and eyes that match. We all sit around the central island, and there is a portable flipchart standing by the end of table across me. I like to switch my eyes between the paper board and the big windows.

Kitty introduces our facilitator, Amee, an occupational therapist. She is in her 20s, a lean woman with straight dark hair, curling inwards at her shoulders.

“Good afternoon and welcome to the mindful art workshop,” Amee speaks slowly with a gentle smile. She walks to the paper stand and draws a face-size circle on it. Inside the circle, she writes three words, one at each line. “Judgment, mindfulness, acceptance.” Outside the circle at the bottom, she writes, “Surprise!

“Can somebody tell us what mindfulness is?” Amee asks, looking around with encouragement.

“To be in the moment,” Kent volunteers the answer, his right hand is twisted inward with scars.

mindfulness art example

“That’s right. Today we’ll make stamps with our imagination. Being mindful, we don’t make judgment. Instead we accept as is, and we’ll find surprise,” Amee says while pointing at the words on the paper.

“Let’s start with a mindfulness mediation,” she walks back to her seat beside me.

We all close our eyes. Click. Amy’s finger gently pushes the button on her iPod. A light music, swirls around the big room.

“Breathe in, and breathe out,” she says.

Her soft voice travels in the room, echoing back and forth.

“Imagining ourselves, breathe in the fresh air, and breathe out the black smoke.”

I take a deep breath, full of moisture from a beach I imagine in my mind. And, slowly, I breathe out a thick, foggy smoke.

“Breathe in, and breathe out. We raise our hands, palms facing the ceiling. We receive the gifts with the gratitude. Now, we lower our hands, sharing with others. We give out the blessings with the generosity.”

Her voice, like a sweet angel, continues to flow around us.

A gentle wind full of seaweed scent refreshes my brain and fills my belly. I blow out a trace of pain – a dull, aching pain. Again, the wind takes away the pain, and it vanishes in the shadows of the weeping willows in my mind.

mindfulness art

“Now, continue to breathe. I’m going to pass on the rubber stamp into your palm,” Amy said. “You’ll hold the stamp and focus on the image, which you would like to carve into the rubber.”

Amee’s tender voice mixes with the rhythm, flying around the table. I feel a light square rubber gently touching my left palm. I put my right hand on top of it, holding it like a treasure.

Breathe in deeply and breathe out slowly. I am flying with her voice into a wooden gazebo in the middle of a lake. It is a dark and foggy night, a gentle breeze kisses my cheeks. No one, no fishermen, no wild geese, nothing is out there, and I am alone. It is absolutely tranquil. Along the beach, the bamboo leaves are quietly dancing in the dim light.

I raise my head. The moon, like a peeled banana, hangs in the remote sky, covered by cloud of smoke.

“Breathe in, and breathe out.  When you’re ready, open your eyes and draw your images on your rubber stamp.”

Although right handed, I start to train my left hand, just in case. Stroke by stroke, I draw a banana in the center of the square. Amy helps me choose the smallest sculpture chisel.  Slide by slide, my left hand carves the banana.

It’s time to dip into the ink and show the artwork. Kent dips into the pink and stamps on his bookmark.

“Hah, it’s a lovely solid heart, full of passion,” Amy says. “Nice job, Kent.”

Sandra takes the green ink and puts her two hands on her rubber, pushing on her bookmark.  Kitty keeps her eyes on the turnout.

“Wow, it’s a beautiful ginkgo leaf, full of hope,” Kitty says. “Well done, Sandra!”

I take my time, pick up the blue ink, slowly and firmly press my stamp.  Tah-dah, a surprise! It’s a new moon, shining above the smoky cloud.

Joy overflows, and, from my fingertips, pours out a poem:

New Moon

Gives light

In the mist of night

Because of her

I am not afraid

To face the darkness inside

“I created a poem!” I declare.

The group asks me to read it.

“Amanda, I love it! Would you please stamp your new moon on my bookmark?  It’s so beautiful,” Kent asks me.

mindfulness art

“Of course!”

“Amanda, would you please stamp it on mine as well?” Shirley says.

“My card, please!”

“Mine, as well.”

The voices come to me from all different directions.

Next, we are all busy passing around the colorful inks, bookmarks, and newly designed stamps.

I am delighted. I also collect their artworks on my bookmarks. A golden horse from Lydia, a delighted heart from Karen, a dreamy rainbow from Amee, a smiling face from blonde Kitty, the healing Gingko leaf from Sandra, and the passionate heart from Kent.

Who says that we are disabled, us survivors of brain injury? Under each invisible disability, there is a beautiful brain, eager to express faith, hope, courage, and endurance with great creativity.


 

Amanda used to work in engineering and finance. She had a brain injury in a car accident and can no longer work. Through mindfulness, she discovered her creativity. When one door closes, another opens. You can download the flyer for Amee Le’s mindful art workshop HERE.

The marvel of sight that remains

BY: COIRE LANGHAM

Since I woke up mostly blind in the hospital, my idea of vision has been changing.

close up of an eye
PHOTO: BUTILIKETHAT.COM

Once all the swelling went down, slowly over the course of a few weeks, I was left with a left field deficit, double vision and neurological sight issues.

The doctors told me, “Your eyes are fine. Something is wrong with the optic pathways in the brain.”

What I’ve been learning since, is there is a lot more to seeing than just left, center or right field. It’s hard to describe ‘not seeing’ to those with ‘full sight’, and I’ve struggled to find the words to express what I could see and not see to family, friends and therapists.

The doctors told me that my vision would never improve, yet I am learning about sight in ways I have never thought about before. Almost a year after my tumour was removed, the brain continues to surprise me.

GRAPHIC: MERCK MANUALS
GRAPHIC: MERCK MANUALS

My right optic nerve was severed, and I lost over 50 per cent of vision in each eye. But nothing could prepare me for the mess my vision became. I had double vision, nausea, flashes and hallucinations.

The faces of people have been eclipsed by an unknown blankness which consumes everything. It’s a blankness that is so subtle, I could never see it. Like a parasite, it constantly steals from my sight – it takes part of every room, and half of any clock. It removes door handles, steals the fork I just set down, and takes away the first part of words, numbers and oncoming cars.

When I look in the mirror, I see a strange brown-eyed amalgamation of features whose sum I once recognized as me, but no longer. The integers have changed slightly but the sum is way off.

I can no longer see the love written on my wife’s face.

The triumphant, mischievous, unbounded, joyful face of my three-year-old as she sneaks out of bed is eclipsed and jumbled beyond meaning. Like the vestiges of an intense fire, structures are displaced, sunken, and twisted to the very edge of recognition.

PHOTO:
PHOTO: SCIENCE.COM

Through all of this my perception of sight is changing. I see like music is heard, all at the same time. Shadows are hard to separate from their substantial counterparts, the minutia of details are a sea of information that is unable to unify into one fixed image.

Yet light is coming back into my visual world and it is so bright I am unaccustomed to it. The starkness of bright light and shadow is a sea of information that is overwhelming, but enjoyable at the same time.

There is a plum-tree in flower on the way to the hospital, and it takes my breath away each time I ‘see’ it. It literally feels good to look at, a riot of white and pink blossoms burning in the sky.

what it looks like to have double vision
PHOTO: SALAM GHASHGHAEI

It’s like stumbling upon a bonfire while walking in the woods. The darkness is banished so completely it is hard to look at the flames and embers raising skyward.

It’s a phenomenon and a joy. I stand and smell the flowers, and they smell good. Visually, they are chaos in pink and white, blurred and doubled and shadowed and screaming, like a throng of rabid young children.

I am left nauseaus and dizzy, but I like it. I had much less of an understanding of the immense joy of sight, and though I’ve lost a bit, I am discovering a new understanding of the myriad of ways to enjoy it. Some plants are an absolute visual starburst of three-dimensional joy. A cacophony of visual stimulus.

That is what is changing, I think. When I’m tired and the borders of what I see all run into each other, like a bad impressionist painting, depth is helping me separate the world. I am perceiving depth more, just like when you loose a tooth and your tongue becomes preoccupied with exploring the new hole in your gums.

I see the space between objects, that strange new empty space that suddenly makes sense and conveys so much meaning. I missed depth terribly and never knew it was gone. We live in a highly visual world, more than I ever knew. Perhaps I am becoming more aware of the hole in my vision and cognitive of how some magic of existence has leaked out through it, and is gone.


Coire Langham suffered a brain surgery and TBI over a year ago and lives in Toronto with his family – who are indispensable as he navigates a changed world. He enjoys the prospects of new community inside BIST, and drinking tea.

September community meeting: positive psychology

At our September community meeting, Amanda Muise and Roby Miller from Community Head Injury Resource Services (CHIRS) gave a presentation about positive psychology.

We also had the opportunity to hear our long-time member Frank Bruno talk about running the Pan Am Relay this past June, and many of us posed with his relay torch (see below.)

BIST Members
Community meeting attendees pose with Frank Bruno’s Pan Am Relay torch (Amanda Muise and Roby Miller from CHIRS are with Frank in the large photo.)

Positive psychology is a relatively new field of psychology, developed by Martin Seligman , the former president of the American Psychological Association. Seligman was motivated by wanting to know what makes people happier on a daily basis.

Seligman found that the roots of happiness are:

  • having positive emotions
  • being engaged in an activity or profession you love and can ‘get lost’ in
  • being in positive relationships
  • having meaning in your life (giving of yourself to others)
  • having a sense of achievement in your activities

And while it is kind of obvious, but also worthwhile mentioning, happiness is important because it’s good for you. People who are happy have fewer heart attacks, strokes and tend to live longer.

The three benefits of happiness

Other keys to finding happiness include:

  • the ability to savour – not chugging your coffee, but enjoying it
  • gratitude – being grateful for everything you have
  • having a positive attitude
  • mindfulness

Amanda and Roby gave us some exercises to help increase happiness.

Write a letter:

Take a moment to think of someone who made a big impact on your life. This person could be a teacher who helped you pass a difficult class, or an important friend in your life. Write a short letter to that person and explain the impact they had on you. You don’t have to share the letter, or even tell the person about it, though research shows that sharing this with the person increases your happiness.

‘Trick’ your brain into being happy

Body language can have a big impact on your brain. As social psychologist Amy Cuddy discusses in her Ted Talk, standing like Super Man in front of the mirror actually boosts your self-confidence. Chewing on a clean pencil uses the same muscles as smiling, and can actually make you feel happier, because your brain thinks you’re actually smiling.

Practise mindfulness

It’s easier said than done, but learning how to pay attention to the present moment or purposely slowing things down can increase your happiness. Even taking just one minute to meditate can be very helpful.

Take a moment to think about your day

This daily practise can help with gratitude and mindfulness:

Take a moment to think about  your day.

Record something that went well: what was the event? What had to happen for it go well? Why did it go well? What role did you play? Why is it important?

Find your 24 strengths

Learning about your strengths and how to use them is crucial to leading a happy life. You can take about 10 minutes and learn about your 24 top strengths at the VIA Institute on Character, a non-profit psychology organization. You’ll need to sign into the site, but it’s free. Another great resource is authentichappiness.org

infographic about strengths
PHOTO: VIA INSTITUTE ON CHARACTER

You can find out more about positive psychology by reading Sophia Voumvakis’ post on Finding Happiness after ABI, here. And we wrote about Frank’s Pan Am Relay experience this summer, right here.

There are a lot of meditation apps you can use, including some which are specific for brain injury. We’ve also discussed mindfulness at other community meetings, which you can read about here.

NEXT COMMUNITY MEETING:  MONDAY, OCTOBER 26th

TOPIC: TECHNOLOGY AND ABI

Exploring the mind-body connection and ABI

It’s hard to imagine yoga and mindfulness instructor Krista Schilter doing anything half way. A year ago, BIST members had the opportunity to learn about Schilter’s unique approach to meditation as a four-time brain injury survivor. Now she found the time once again  in her busy schedule (among other things, Schilter teaches yoga, mindfulness and skating) to share some meditative wisdom. And it worked:  on a cold, dreary and all-round miserable January night, she made the room feel, better. Like bitter cold Monday nights in January are ok, something we can get through, if we just breathe.

Krista Schilter
Krista Schilter demonstrates alternative nostril breathing

Schilter lead the group through simple breathing excercises which she says have helped calm her persistent headaches and improve her sleeping. She says she uses meditation as a tool to help her be “the best version of herself” possible. She reminded us that though we are rarely mindful of it, breath is the one thing we all have in common as living beings, .

Schilter stressed that meditation is a practise. It’s about where you are at today, in this moment, in this body. She asked the room to make a commitment to practise one breathing exercise in the morning when we first wake up, or at night before we go to sleep. She asked us to think of meditation as something we do every day, a habit like brushing our teeth.

Schilter speaks from experience. She says when she gets “lazy” about her meditation, her headaches come back. She has, at times, felt resentful that these practices need to be a part of her life, that she has to wake up that much earlier every morning to do them. At the same time, she says, the benefits are enormous. It’s about mindfully accepting who the “after-ABI Krista” is, she said.

The first technique Schilter lead us through was alternate nostril breathing, which she says helps to re-wire neurotransmission and balance the hemispheres of the brain. You can find an example of alternate nostril breathing in the video below:

Alternate Nostril Breathing from Center Your Health on Vimeo.

Another breathing exercise Schilter taught was  Satali Pranayam. This practise can cool you when you are over-heated and Schilter says she also practises it whenever she feels a headache coming on, even if she’s out in public. To practise Satali Pranayam:

    • breathe in through your mouth like you’re sucking a straw
    • hold your breath
    • exhale softly through your nose

Schilter says that being mindful is learning how to respond to stress as opposed to reacting to it. “That’s the work,” she told us. “To realize and notice what’s going on at a point in time and to make a decision. … It’s hard work to be mindful and focus on the now.”

It is hard work, but Schilter makes us think anything is possible. And who knows? If Schilter comes back next year, maybe she’ll get us levitating.

If you’d like to contact Krista Schilter for more information on breathing exercises, you can email her at krista@scrambledeggsheadtrauma.com. You can also look at her document on mindfulness and ABI here.

BIST’s next community meeting will be on Monday, February 23 from 6-8 p.m. (topic TBA) at the Northern District Library, 40 Orchard View Blvd, 2nd floor meeting room.