Tag: Traumatic Brain Injury (TBI)

Evan Wall was a bright 19-year-old from the small town of Shellbrook, Saskatchewan whose only concerns were football, engineering college and partying. He was a top student with every reason to look forward to a very bright future until 2016, when a severe car accident and resulting traumatic brain injury brought his carefree life to a screeching halt.

Evan still doesn’t remember the late-night accident on a country highway. He was a passenger in a truck that flipped and ejected him through the windshield into a roadside ditch. Paramedics weren’t hopeful about his survival as a Shock Trauma Air Rescue Service (STARS) air ambulance carried him to Saskatoon’s Royal University Hospital. He spent two weeks unconscious in critical care. Along with bruised lungs and other more minor injuries, Evan sustained a diffuse axonal brain injury (DAI). The neurologists couldn’t predict whether Evan would wake up or spend the remainder of his life in a vegetative state.

His anxious family was thrilled when Evan did open his eyes after a few weeks, but alertness took much longer to return. Evan spent six weeks in the neurology ward learning to communicate with head shakes and hand signals. During this time, he wore diapers, was fed by a stomach tube, and learned to sit in a wheelchair.

“After six weeks, I was more alert but still not talking or responsive beyond answering yes or no questions with hand gestures. Degree of alertness after a brain injury can vary greatly, and diminished alertness can be one of the permanent effects. Fatigue from not just physical but also cognitive activity is a very common condition after a brain injury, one that I still live with.”

Evan’s speech and motor coordination had been badly damaged. He spent the following winter in the rehabilitation unit of Saskatoon City Hospital, where he undertook a daily regimen of speech, occupational, recreational and physio therapies in hope of recovering his abilities to walk, talk, eat unassisted and many other basic life skills.

“Everything I was doing now was incredibly painstaking and slow going. You might think the frustration would have driven me through the roof, but my mind was fully engaged just dealing with the tasks at hand. In this new headspace, my sense of self-reliance was challenged at every turn and there was no more room for my former blasé attitude toward achievement. The option of that mindset had been plucked out of my life. The humbling was sudden and absolute.”

When he was released from in-patient care to return to his parents’ home in Shellbrook Saskatchewan, Evan had spent a total of six months in the hospital. Evan now faced a life irrevocably altered. Gone were the athletic skills and facile academic prowess he had built his life on in the past. He would have to recreate himself.

“The work was grueling and very lonely. What I was doing and experiencing was present in my mind, but higher-order thinking would take time. A few months earlier, I had been a sharp engineering student able to solve calculus equations in my head. Now, my consciousness was fully occupied with seemingly mundane tasks and movements. Ironically, the learning and adaptation going on inside my brain was more dynamic and demanding than a healthy adult would ever have to endure. I was working harder at learning basic life skills than I ever had before, in university or any other aspect of my life.”

“I wasn’t that Evan Wall anymore, and I truly didn’t know what that was going to mean yet. Everything was new and scary without the hospital support I was used to. All I knew for sure was that I wanted to get to work and heal as soon and as much as possible.”

Daily strength training at his local gym soon became a saving grace. Over time, Evan’s body grew stronger and there were improvements in his coordination as a result. When he realized that good health would help optimize his recovery, Evan also started taking better care of himself, and put drinking and smoking behind him for good.

Evan’s family connected with the Saskatchewan Brain Injury Association and through it, Saskatchewan Health’s ABI Outreach Team, which runs the PARTY Program (Prevent Alcohol and Risk-related Trauma in Youth) for high schoolers. Evan was invited to team up with paramedics, fire fighters and police to help educate high school classes about the potential outcomes of risky behaviours. Since 2018, Evan has presented talks at high schools across Saskatchewan and is known to be a very relatable and engaging speaker.

“Hearing from a brain-injured kid close to their age really brought the message home. There was little difference between me and the current students when it came to interests and party lifestyle. The students were very engaged when I described the nitty gritty details about living with a brain injury and seemed to take the subject of safety seriously when they heard about my having to wear diapers, how I no longer work or attend school, even what it’s like to talk to girls now. I was happy to help contribute to brain injury education and do something with my time to help keep other teenagers out of hospitals.”

Five years after his accident, Evan has recovered an altered form of his voice that gives some people the erroneous impression that he is mentally challenged. He also walks unassisted, but his walk is slow and cumbersome. Evan lives on his own in Saskatoon, where he still visits his local gym daily. In fact, Evan has become an avid body builder and has even competed in physique building competitions.

“Bodybuilding is one of the purest forms of self-discipline because you’re literally fighting yourself all the time. Even during exertion, the body shouts loudly and constantly that it wants more carbs, but it’s not getting them. The results can be spectacular, but the self-discipline required to get there is enormous. I don’t think I’d be where I am now if I hadn’t gone through the physical and emotional rigors of coming back from the dead.”

“Challenging my limits has always been part of my journey. I did it physically in my youth. Since my injury, I’ve had to challenge my limits mentally and emotionally as well. And I’m still doing it today. I can say in all sincerity that living with this brain injury, I have become well acquainted with physical weakness and, in dealing with it, have become tougher than I would have ever imagined.”

To his dismay, Evan has found that the outside world reacts differently to him since his accident. Some acquaintances speak to him differently than they used to. Strangers look away or, when they do interact with him, often talk to him like a small child. Evan feels there is much society can learn about interacting with disabled people more respectfully.

“If there is one thing I know first-hand from being both an abled and a disabled person, it’s that able-bodied people react distinctly differently to one versus the other. Before my accident, I never would have imagined I would one day talk about ableism, ableist fragility, and microaggressions. I was a strong, agile, and capable teenager who, having grown up with a sister with autism and epilepsy, was raised to be considerate of other peoples’ differences. Prejudice in any form never crossed my mind or my path. I hadn’t even heard of the word ‘ableism’ before my injury.”

In 2020, Evan took on a collaborative writing project about his journey with a writer friend, Susanne Gauthier. Over many coffees and interviews with family, friends and colleagues in the brain injury community, Susanne drafted Evan’s story in full detail – from his point of view. Their co-authored memoir is entitled Rebuilding a Brick Wall, published by DriverWorks Ink, Regina SK 2021, and available in Canadian bookstores.

What does Evan want people to take away from his story?

“For someone with an injury, that you will always move forward if you refuse to give up. Even though life looks completely different from before, there are always successes and joyful moments that make the journey worth it, not to mention wisdom!”

“For able-bodied people; you may not think you get uncomfortable when you meet a person with a disability or treat them differently, but are you sure? Microaggressions are still heavily embedded in our culture. We have only just begun to acknowledge the variety of microaggressions towards those with ability differences that are still rampant.”
More information can be found on Evan and Susan’s website

Musician Kinnie Starr acquired a brain injury in 2015 after a distracted driver collided with her taxi in downtown Vancouver at 70 kilometres an hour. But she didn’t know about it until 18 months later.

“I knew nothing about brain injury [before my accident],” Kinnie says. “For the first few months, the focus was on my physical injuries. I had an injured spine and limbs.” As she worked through rehabilitation for her physical injuries, she began to realize that something else was going on.

“When I laid down to go to sleep, the bed would be spinning. I was experiencing sensations such as the room moving, depth-perception issues, and my spatial relationships changed,” she says. Kinnie knew these things were real, but because of the brain injury that hadn’t been discovered yet, she had trouble drawing attention to what she was experiencing – especially since her other injuries were more visible and immediate. “There were a lot of other physical matters with my legs, pelvis, shoulders and spine. And I couldn’t articulate what was happening because of the brain injury.”

“My husband is the person who noticed something was off. He said I was flipping my sentences, had slurred speech, and my walk had changed,” Kinnie says. “It was about a year, a year and a half before I was [officially] diagnosed.”

Finding answers and the right rehabilitation

The process of finding answers and treatment was a long one for Kinnie and her family. Once it was clear that something was going on besides her physical injuries, it took some time to find the right solutions.

“I was boggled with [the] medical investigation,” Kinnie says, trying to describe what it was like to live with a brain injury and find a diagnosis. “It’s…you’re just in it”. When she did receive her diagnosis, Kinnie started multiple kinds of rehabilitation – many of which she continues to this day. “I’m still ongoing with rehabilitation – for example cold laser therapy, sensory deprivation, and going to a chiropractor.”

While the therapies are a big help, Kinnie still faces challenges every day. “I still have to be careful with changes in light,” she says. “I try to build self-care into my days; take time away from stimulus. For example, I carry an eye mask with me to create my own dark space. Even if it’s just a few minutes in an airport bathroom where I can get a little privacy – it makes a big difference for me.”

Kinnie’s other self-care tip is simple: “put your phone down.” It may seem small, but for Kinnie replacing part of her scroll time with other activities or rest made a big difference.

The impact on her music

The impact of Kinnie’s injuries had a profound effect on everything, including her livelihood as a musician. “I went from living my life to not being able to do my work,” she says. “I’m an artist – that’s my trade.”

It was challenging for Kinnie to put to words what her experience was like in the early stages of her recovery – particularly when it came to the changes in her abilities. “There’s no way to explain the lack when you aren’t in a standard work environment,” she says. “When you work alone, you don’t have people interacting with you, noticing changes [in you].”

It was difficult for Kinnie to even sit down and pick up her instrument. “I couldn’t play guitar: even looking at it I vomited or fell off my stool,” she says. She would even occasionally experience the sensations that accompany urination.

When Kinnie had her accident, she had already committed to another album called Feed the Fire. “The record label hired a producer (Douglas Romanow) to help me meet my contract,” Kinnie says. “It was the first time I had a co-writer. It was really interesting.” Kinnie was used to working solo, and even when working with Douglas would continue to write the lyrics privately.

Co-working and her brain injury made for an unusual schedule that neither of them were quite used to. “When we started I could only do about 45 minutes at a time, and then I’d have to take a break or be done for the day,” Kinnie says. This was a change from the full days of work she had been able to do in the past. “The album workflow was so dynamic, very stop and start. He [Douglas] turned out to be a good friend and was incredibly patient,” Kinnie says.

With patience and hard work, Kinnie has made incredible improvements in her recovery and her music. “Now I can do 8 hours a day. And 6 months ago (2019) she was able to start playing guitar again. It was a big milestone, one she was happy to celebrate.

The way brain injury impacted Kinnie changed her outlook on being an artist. “I’m a new person. I’ll never take my musical skill set for granted again,” she says.

Furthering the conversation

One of the biggest challenges Kinnie has experienced is the lack of knowledge and understanding about brain injury. While her husband, mom and other family members and friends were incredibly supportive, other people didn’t understand what was happening.

“People don’t understand brain injury. Some thought I was just being emotional,” she remembers. Now, a few years after the accident, she’s hoping to help change that.

“[After the accident] I didn’t know where to go for help – even my doctor didn’t know I had a brain injury,” she says. “There’s a lot of misinformation about how a head injury presents itself,” she adds. It’s not just one set of symptoms – it’s a whole range of them, and many are invisible.

“There’s not enough info on nuanced human emotion and brain injury,” Kinnie says. She explains that there are a lot of emotions connected to a brain injury, and for her it’s easy to see them when you know what to look for. “When you have a brain injury, you know when someone else does. They look lost, confused, and scared,” Kinnie says, adding she felt the same way.

Kinnie is also trying to bring more attention to the differences between genders when it comes to head injury. During the legal case for her accident, her lawyer was representing 3 other women with head injuries, all of whom were experiencing drastic changes to their reproductive health and sexual functions. “Because there is a history of women’s sexual health being tied exclusively to reproductive function, women over 30 who experience sexual dysfunction from brain injuries are readily accused of histrionics…should their issues be brought to court. Men, on the other hand, can readily demonstrate loss of sexual function because (for them) it is visible,” she says. This was an eye-opening discovery for Kinnie. She has spent time working with researchers at the University of Calgary on a medical journal article (being published soon) about women and concussion in an effort to further this particular conversation about brain injury and gender.

Listen to Kinnie Starr

Kinnie has been actively involved in many other projects since her injury, including the documentary Play Your Gender about the gender wage gap in the music industry, and was a musical partner for the Haida language film Edge of the Knife. She also has new tracks coming out in 2020. It’s safe to say that brain injury has not impacted Kinnie’s drive to support what she believes in and to share her music.

For more information about her music and to listen to her songs, you can visit her website or check her out on streaming services.

My name is Jonathan McMurray and I have been living with a traumatic brain injury since 1995. This story begins in August 1995 in Riviere Du Loup, Quebec. We were three students returning to Acadia University in Wolfville, Nova Scotia. We were enroute from Georgetown, Ontario to finish our final year at university. My life changed forever that day, late at night in the dark along the Trans-Canada highway near the New Brunswick border. A car tire popped and as the car flipped I was ejected from the side window. My seat belt wasn’t fastened because it was my turn to sleep and I was stretched out in the back.

Help came quickly, because as luck would have it there was a trauma hospital near the accident site in Riviere Du Loup. Calls went out to my family around midnight from the hospital. My family was asked to get to Riviere Du Loup as quickly as possible as I lay in a coma (a 6/15 on the Glasgow coma scale). They came from Georgetown, Charlottetown, Prince Edward Island, and Victoria, British Columbia not knowing what to expect or what was to come next. No one knew that I had suffered a traumatic brain injury, they just knew they had to get there as quickly as possible.

I’d had a very hassle-free life up to that point. My parents, two brothers and I lived in Georgetown – a small town less than an hour west of Toronto. I’d had girlfriends, played some basketball and spent most of my free time on my skateboard or listening to music. All of my childhood and 22 years of my life were completely erased after my brain injury. So my life really didn’t change: it ended. Everything was taken from me.

Coming back to earth in 1995, I was a complete alien. I knew no colours or shapes or much of anything really. Music had luckily stayed with me, and that was an enormous help to my rehabilitation. My family and friends of course were always able to fill in the countless gaps of my memory. Also social media was very helpful in putting my life back together. Not completely together because 22 years were missing, but as together as it was going to get. Everyone would always share stories about my youth which for me was a complete mystery: it seemed like make-believe or like someone else’s story. Gradually over time I was able to piece together enough stories of my past to realize that the accident hadn’t changed me really, it had just damaged some of my parts.

My parents and brothers were always there. I had to re-meet them and have complete trust that they knew what would help me. Never hovering over me, but always there to help me navigate. They would tell me that the raccoon I almost let into our house was not the neighbour’s dog, but a slightly more dangerous animal. Or that shaving cream was not whipped cream and I shouldn’t stick it in my mouth. I was forced to trust that these people that I didn’t recognize (my parents) would look after me. Everything was entirely foreign so I had to hope that this “family” knew what I needed and how I would best get it.

A story that I sort of remember from the early days of my recovery was when I was tasked with picking a cassette tape for the ride to Annapolis Royal. My parents and I entered the store and my mother reminded me that I was allowed to pick out any tape that I wanted. Once we made our way to the tape section of the store I was a fish out of water. There were a lot of different tapes to choose from and I didn’t have a clue what to get. I saw a staff member (which I recognized because of the uniform) and thought she could help me pick out a tape. “Excuse me, which tape should I buy?” I asked.

She looked at me like I was 100% alien, and I guess I was pretty close at that time. “I don’t know, what do you like?

“I don’t know,” I said to her and I was being totally honest. I didn’t know what I liked or what I wanted.

“Well you could get the last Nirvana tape, they won’t be making anymore music now that Kurt Cobain is dead,” she told me.

“Kurt Cobain is dead?” This had happened over a year ago but I had no idea, and this was an example of feeling ‘out of it’. This feeling I would learn to accept and live with, but it was one of the hard realities of brain injury. When we got to my grandmother’s house and I told my cousin Duncan that Kurt Cobain had died, he tried really hard not to look at me as though I had three heads.

Duncan and I went through my huge collection of music afterwards and something else shocking happened. For some reason that I couldn’t understand at the time, there were a bunch of hip hop CDs and tapes in my collection. Without thinking twice I took every tape or CD that looked like a “rap” product and put it in a shopping bag to give to my cousin. Hundreds of dollars worth of music was bagged and given away; I was sure that this stuff wasn’t mine. A year or so later I would buy all of these records again but at that point I was totally certain they didn’t belong to me.

My brain injury also came with visual agnosia, which adds another layer of difficulty to my already complicated life. Visual agnosia is when you can see things, but you can’t necessarily figure out what they are just by looking. My wife came in to visit me once at work some years back and I had no idea who she was until she spoke. She had straightened her hair.

Having been through my own traumatic brain injury, I have three suggestions to share from my long, exhausting, frustrating journey – and that of my family.

1. Be patient – Now the medical staff would understand this more easily than the patients, but it makes sense (trust me). Take baby steps, and celebrate your accomplishments as they happen. Take/make note of what you do as it’s done (you may think “big deal” at the time but it is a big deal). So use a memory book or daily schedule to recognize your progress. This observation of your accomplishments will help you see progress and continue to be patient.

2. Take breaks – When you are tired and/or worn out you need to learn to give yourself time. Obviously everyone wants to work on making himself or herself better, but cut yourself some slack. If you could go and listen to a record, or go for a walk, or play a game then you would be taking better care of yourself. You are far less apt to throw in the towel and settle if you take breaks. Once you’ve had your break from what can be a totally intense reality, then get back to work on your self-reconstruction project. If you stick to it when you are tired than everyone loses. The project or task at hand won’t be done as well as possible, and if you push it too much then you will either become even more frustrated with your situation and/or start to give up. Never ever give up. It’s not a test that may affect your grades: this is your new reality. No magical spacecraft will come from the sky to return everything to how it was. In 1995 I was in such bad shape that the doctors and nurses would be surprised to see me today. But I took breaks, and I never gave up. There is no due date on rehabilitation: it is a journey.

3. Be happy – This will be the hardest to understand and the most likely piece of advice to frustrate you. Try however to look for the good in life, appreciate the beauty that surrounds us. It is not for me to guess or try to figure out how you will be happy. YOU figure out how to be happy. It could be puzzles that make you happy, art, picture books, watching birds, eating an orange – whatever! Music was mine – it had the ability to take me away to a much happier place. So when your world seems too much or too intense then you have found your front row tickets to a happier place.

This now is not advice but a fact that may get lost in the fog of rehabilitation. This can be an incredibly long journey. The sooner you realize this the better prepared you will be for what could lie ahead. 22 ago my family and I would have never predicted how far I would come. That I would have – with some extensions of course – finished my Bachelor of Arts at Acadia University. That I would become employable and employed. That I would meet a beautiful woman, get married and have two boys. That I would function quite well as a stay at home dad. That after a decade or so of hard work I’d become a published author with my first book “Mind the Gap” that describes my long journey back to health.

We also couldn’t predict that over 20 years after my brain injury I would be diagnosed with cancer in three different parts of my body. Fortunately, after surgery and an intense treatment of chemotherapy I have recently been told that I am cancer-free.

Thanks to the lessons I’ve learned over the past two decades and a support system of family and friends, I’m here: I’m not sure where I would be today without them.

Thank you for reading my story and I wish you the best with yours.

For more information about my experience, visit my website: www.jonathanmcmurray.com