Living life with a brain injury is difficult. People who do should be commended for trying their best and never ridiculed for their situation.
Everything takes more time to do. Depending on which part of the brain is injured, your hands may not work right, you may have learning challenges, your speech may be hard to understand, mobility may be an issue, you may have personality changes, your reaction time may be slower.
Everybody says, ‘Just stay positive about it.’ But they don’t live with a brain injury. People say the most inappropriate things like, “Oh you have got to be less sensitive about this.” They aren’t in my shoes. They have no right to say this. A brain injury can cause massive problems. People don’t realize this until they actually have lived the experience of someone with a brain injury. Then they realize, “Holy Hell!” What did I sign myself up for here? I know nothing about living with a brain injury.”
And then a whole new life begins. People who live with a brain injury are heroes and should be commended for doing their best. Walk a mile in their shoes and you will understand.
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.
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.
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.
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.
It took time for Mark Koning to find the right cover image for his third and most recent book, Challenging Barriers and Walking the Path. First, he wanted to find a picture of himself with his dad, who died when Koning was just 13-years-old. Second, he wanted a picture of the two of them walking away on a path, à propos the book’s title.
“The beach kind of looks like a path,” Koning said. “I couldn’t find ‘a walking away’ picture.”
What he did find was a beautiful, authentically retro image of the father-son duo on a beach. The older Koning is looking up a the sky, the young boy is happily focused on his dad.
As his book title suggests, Koning has dealt with several barriers in his life. In 2001, Koning’s mother acquired a brain injury from an accident. Two years later, a neuopsychologist confirmed what Koning had suspected for a while – that he had acquired his own brain injury at the age of six, as the result of Encephalitis.
“I’ve accepted myself a lot more,” Koning said. “I am proud of how I live with [brain injury].”
Back in 1978, despite being in a coma for two weeks, and needing rehab to learn how to walk, talk and function again, Koning had no idea he had acquired a life-long disability. He struggled throughout his education and in social situations, without understanding why he was having problems. Eventually, Koning was labelled as having a learning disability and received special education support. But he says the real issue, the brain injury, was never addressed – or spoken of.
“The word ‘brain injury’ didn’t happen,” Koning said.
“Since discovering I had a brain injury, there was I point where I became an advocate, I started doing videos.” Koning said. “I was on T.V., talking about brain injury.”
Koning has explored different careers, fitting in writing between work commitments and caring for his mom. After working in the hospitality industry for several years, he switched to the non-profit sector, and is currently the communications and administration coordinator at the AIDS Committee of York Region – a place where he felt comfortable disclosing his brain injury right away.
“[At times] I work more than full-time to not fall behind,” Koning said. “When I don’t stop myself [to take breaks] that’s when I fall behind.”
Koning had accessibility on his mind when publishing his book. The chosen fonts – different depending on whether it’s a flashback, an excerpt from his blog or narrative, are easy to read. Koning has also written in short paragraphs.
“Otherwise you find yourself at the end of the paragraph and have to start over again,” Koning said.
Challenging Barriers is Koning’s first non-fiction book. He says there could be another book, a part two to Challenging Barriers in the future, but he’ll go back to writing fiction as well.
“At the heart of it, I’m still a writer,” Koning said.
Last month, 11-year-old Andrew shared his story of acquiring a brain injury as a result of a stroke for our #areyouaware campaign. If you read what Andrew wrote, you know that his story is beyond powerful – his stroke occurred just this past winter, and he is facing more brain surgery in the upcoming months. But none of this stopped Andrew from heading back to grade five as soon as he checked out of Holland Bloorview, finishing his school year, and then wanting to give back.
Andrew asked his parents if he could have a website for his 11th birthday. While Andrew says, he was “just joking around” his mom and dad took his request seriously, and with some parental guidance, Andrew recently launched www.iloveyourbrain.com.
“It’s for kids who have brain injuries, so they know there are other kids who have brain injuries,” Andrew said.
Andrew wants to reach out to other pediatric stroke survivors in particular, since he says he has never met other kids who have acquired a brain injury as a result of a stroke. According to the Heart and Stroke Foundation, three to six kids per 100, 000 in the 28-days to 18-year-old age bracket will experience a stroke, which is a higher incidence rate than brain tumours.
“Not just only older people and adult can have strokes, but kids can have them too,” Andrew said.
The statement, ‘You don’t know how strong you are until it’s the only choice you have‘ is in the centre of the home page of www.iloveyourbrain.com, and strikes a chord with Andrew’s bravery during his recovery. Andrew says his mom, Nadine Vermeulen, found the quote on-line, and he also has a t-shirt with the statement on it.
“You need to be strong to survive things and fight things,” Andrew said.
Due to his recovery, Andrew’s summer activities are fairly limited right now, though the tough 11-year-old does have stuff going on. He is playing golf, and The Whitby Major Mosquito A baseball team, the Chiefs, are letting him practise with them this season. After a chance encounter with his mother, a former Colorado Rockies pitcher who lives in Andrew’s neighbourhood is going to toss the ball around with him, too.
Meanwhile, Andrew says his brain injury has – understandably – impacted his friends and family. He said before his stroke, his friends were pretty good at wearing bike helmets, but his brother was not.
I have found Art to be a great therapy tool. I say that with a capital ‘A’ because I am referring to all forms of Art, from singing to painting, dancing to acting. For me, writing is something I use as my coping mechanism and support for understanding. Writing is my learning tool and aids my growth. But throughout my life it has been anything creative that has made an impact. It is the ability to use the imagination, to soar high and move forward.
I have heard many stories about the ways in which a form of Art has helped individuals deal with brain injury, such as music or sculpting. Creating seems to bring about a relaxation to the mind, and a flow to the body. Even listening to music can offer someone motivation. Looking at pictures or staring at a painting can begin to alleviate pain.
Art is in the eye of the beholder, and because of this freedom, it can bring huge amounts of joy to the heart. It does this for plenty of people both with and without a disability because creative arts are like magic to the soul.
Doing the craft yourself or witnessing it within the pages of a book, a stage, the big or small screen; the brain becomes active and stimulates emotions. These are emotions which otherwise tend to remain stagnant when stuck in a cycle of isolation, depression, or frustration. Just calm down and pick up a paint brush, hum a tune or get lost in the cloud of the imagination. I’ve seen brain injury survivors come alive and develop a passion because of Art. Those powerful feelings can be transferred onto other challenges such as cleaning the house to going to a regular job.
Various fields use the concept of brain plasticity. One such very exciting, emerging field involves the study of art and the brain, or art therapy. … in terms of therapy, there is no difference between using scientifically validated novel art therapy and other current standard therapeutic interventions. Treating human pathology using art gives us a tremendous alternative unique and novel option for engaging brain networks that enhance the way the brain processes information, incorporates external and internal data, and develops new efficient brain connections.
Whether you are looking at art from a scientific standpoint, a therapeutic one, or as just a hobby, there is no doubt that the effects that dance upon the brain are inspiring.
Since sustaining his brain injury at an early age and now armed with a Creative Writing diploma and a social responsibility, the goal for Mark is to share, inspire and grow, with others and himself. To learn more, you can visit his website at www.markkoning.com
There are few things greater than being referred to as a hero.
Don’t get the wrong idea, I do not advocate for brain injury for that purpose. I do not talk about what I have gone through, and still go through, as a Survivor of ABI (acquired brain injury) for fame and applause, though they are nice to hear. They are especially nice to hear because brain injuries are usually invisble, seldomly understood and rarely acknowledged. Survivors’ struggles are mostly overlooked and/or given little sympathy.
I talk about brain injury to bring about awareness, to help others with ABI know that they are not alone, and to get things off my chest. I wear my heart on my sleeve and I want nothing but to help others and the cause in general. But the hero thing, yeah, it sounds and feels good.
Brain Basics is designed to provide health care workers, caregivers and others with an introduction to the world of brain injury. The goal of this two-day workshop is to help participants understand the structure and function of the brain, to appreciate the consequences of an ABI and to gain some strategies to work effectively with people living with this injury.
However, the brain is complex, and so too is a brain injury. Almost every brain injury will impact a Survivor in different ways. So this is where I come in, usually along with four or five other Survivors, and maybe family members.
We all sit on a panel and are asked various questions about living with an ABI. These questions range from the date and type of the injury, to the hardship and personal impact which have resulted from it.
The facilitator is very gentle with the questions and there is no pressure to answer, because after all, real life experiences can be difficult and emotional. And not just for panel members, for our audience as well. I have seen quite a few eyes tear up after hearing our stories.
When the facilitator is done with the Q&A (and we are asked to keep our answers to a minimum so we don’t go on and on, which we probably could) participants have the opporunity to ask us questions. The purpose of this part of the program is for the panel members, conducted by the facilitator, to tell and share stories that the modules don’t teach.
The only real cure for brain injury is for everyone to develop a basic understanding and then work together to create awareness and inclusion. That’s what this program and advocating for brain injury is all about.
According to OBIA, more than 2400 people have taken the program. Those who successfully complete the examination are awarded a certificate from OBIA.