Mark Koning challenges barriers in his latest novel

BY: MERI PERRA

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.

Cover_Challenging Barriers“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.

Mark Koning
Mark Koning

Koning, who writes for this blog and Neuroconnect Brain Injury and Rehabilitation magazine, has found solace in writing over the years. It was through researching a project for a writing class that Koning first thought he might be living with a brain injury.

“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.

To find out more about Mark Koning’s book or to purchase a copy: http://www.markkoning.com/ChallengingBarriers.html

Meri Perra is the communications and support coordinator at BIST.

#TBT Paralympian Frank Bruno carries the Pan Am torch for brain injury awareness

Frank Bruno Pan Am Relay

BY: MERI PERRA

Frank Bruno Pan Am Relay
Frank gets off the Pan Am bus, ready to walk the relay

If you’ve ever attended a BIST event, you’ve likely meet Frank Bruno.

For one, Frank’s been volunteering at BIST since before day one, during our predecessor’s Head Injury Association of Toronto (HIAT) days.

You can tell time by when Frank shows up, always a good 45 minutes early, to make coffee and set up for our monthly community meetings. He’s willing to do whatever it takes to help out – this past April, he used his connections in professional hockey to get us free tickets to the Hockey Hall of Fame. Frank’s the one who sets up an indoor golf game at our holiday party every year, and is our encouraging coach during our annual Frisbee golf games at Centre Island.

The point – we were pretty thrilled when Frank told us he’d been selected as a torch-bearer at the Pan Am Relay for the Toronto 2015 Games.

Why? Because – because on top of all of this Frank is a three-time Paralympic gold medal winner. He’s accomplished a lot, and inspired many.

Here’s our Q and A with Frank about the big day – which happened July 4th at the Parliament and Wellesley area in Toronto.

Frank Bruno Pan Am Relay

 BIST: What was it like to carry the Pan Am Torch?

FB: It was a great day for brain injury. I was the one who got to carry [the torch] , but it was for the brain injury community. Seeing all the happy smiles makes for a great day.

BIST: Who came out to see you at the relay?

FB: I had a lot of family and a number from the brain injury communities, plus several from my high school ( most of which I do not remember, because of the injury) and several from Durham College. My coach Faye Blackwood was also there.

Frank Bruno Pan Am Relay

BIST: What did you do after the relay?

FB: The day is filled with  a lot of hurry up and wait. Once you get there , you listen to what you are to do and when you are to do what. The wait is really very anxious, you wanna go out there and do your walk.

You all get loaded into a bus (14 of us on July 4, 2015 ) and one by one you get dropped off at your specific location. Then you wait for the flame to come to you. Once your torch gets lit from the previous person you are off on your way to do the 250 meters.

You are allowed to hop, skip,  jump or run, but with the lit torch in your hand do you wanna make the short course over in 30 seconds or make it last, and last as long as possible? I choose to walk, so many people got to see me carry the flame for brain injury. Once you light the torch after you, you walk off the street and they de-light your torch and they take your torch and your day is done. I went with my family to have dinner

BIST: What did the Pan Am Games give you for doing the relay (outfit, anything else you got to keep, free tickets?)

FB: I was given a Pan Am outfit, a shirt, shorts, a pair of socks and a wristband. Nothing else, no tickets no nothing, I had to buy the torch that I used for $550 plus taxes. [The day before posting this article, Frank told us he had managed to fundraise enough money to get his torch, see below.]

Frank Bruno Pan Am Relay
Frank poses with Tracy Moore, host of City’s Cityline who also did the relay on July 4th

BIST: Did you get to go to any Pan Am Games? What did you see?

FB: I only went to see the beach volleyball game. My friend was a line judge for beach volleyball. I went to see her in action. I actually only got to go to one day. I [attended] the opening ceremony for the Para Pan Am Games on Friday August 7 at York University. I saw 7-a-side football games, these are for Cerebral Palsy and neurologically impaired (brain injury) and para-athletic events and saw the closing ceremony as well.

Frank Bruno Pan Am Relay
Frank’s Pan Am Relay torch

Meri Perra is the communications and support coordinator at BIST.

Having a spouse, longer time in rehab increases community integration post-TBI

BY: BHANU SHARMA

There’s more evidence that having a spouse, and being able to stick it out for the long-run in rehab,  is good for you.

Often, traumatic brain injury (TBI) results in a number of symptoms, problems, and complications. Among the most well-known of these are those which impair or compromise cognitive processes such as memory, attention, and thinking, and to a lesser extent, affective functions such as emotion and mood. But TBI can also have a negative impact on how a person engages in their community.

photo credit: The Lover via photopin (license)
photo credit: The Lover via photopin (license)

Changes in community integration – meaning the extent to which one participates in their community, society, and home – have long been identified as a consequence of TBI. Given that higher levels of community integration following a TBI are positively related to life satisfaction, physical health and perceived success in transitioning from hospital to home, improving community integration should be a primary rehabilitation goal following brain injury. However, to improve community integration, it is first important to understand the factors that influence levels of community integration following TBI. One recent study did just this.

In the study, the authors examined levels of community integration two-years following a brain injury. The study participants had either a moderate or a severe TBI. Although there are a number of ways to measure community integration, the authors of the study used the Community Integration Questionnaire (CIQ), a widely used and valid measure of community integration for patients with brain injury. Using this questionnaire was a strength of the study.

After a series of statistical analyses, the study identified five main predictors of higher levels of community integration two-years following a TBI.

community integration

Promisingly, many factors can contribute positively to community integration. Certain family dynamics (such as living with a spouse) and accessing some healthcare services (i.e., rehabilitation programs) can improve community integration two-years following a brain injury.

Importantly, this study indicates that there can be improvement in community integration and therefore recovery over time. The results of this study can perhaps be used to ensure that TBI patients receive the supports they need to achieve a high level of community integration in the years following their injury.

 Bhanu is involved in traumatic brain injury research and is interested in learning more about – and helping promote – recovery following brain injury. 

Interactions after a TBI

BY: SABA RIZVI

I think the hardest thing since acquiring my brain injury has been the inability to perform basic functions, such as reading, talking, walking, and just even being able to eat.

photo credit: Girl in Despair via photopin (license)
photo credit: Girl in Despair via photopin (license)

Even now, several years later, these functions still feel like a luxury.

Living with brain injury is usually an invisible disability. People may tell you to ‘try harder’, ‘not be lazy’, or that ‘you look fine, stop telling yourself there’s something wrong’. These people don’t understand that an ABI survivor’s best bet to recovery is putting their best foot forward, regardless of how they’re really feeling.

Ironically though, if you do try to live a normal life, these people will tell you that you are fine and they don’t believe that something is wrong. But when you are in such a bad state that you can’t get of the house, these same people will tell you to suck it up and stop being a baby. So, since I acquired my TBI, I appreciate those who have accepted the new reality as much as possible – the ones who have been patient.

Even something as little as needing space or not being upset if I need help reading, or if I just have the energy to stay home and watch TV are a big help to recovery. I also appreciate those who are not understanding, because it gives a more clear understanding of who you can trust or who is actually listening.

Saba acquired her brain injury in 2010, and is interested in TBI awareness and advocacy.

Q + A with US 7-a-side football champ Gavin James Sibayan

BY: CELIA M.

On September 8, 2007, Sergeant Gavin James Sibayan’s life was changed forever. While on deployment in Iraq with the U.S. Army, he was the gunner for his squad when he was hit by a third improvised explosive device (IED) in thirty days. Despite being knocked unconscious for approximately 30 seconds, with shrapnel in the left side of his head, Sibayan managed to get it together and started to fire. It would not be until two weeks later, when he was medevaced to Tule, Germany for extreme headaches, that the severity of his head injury would be discovered.

Gavin James Sibayan
Gavin James Sibayan

Sibayan medically retired from the military in 2011, leaving the service with an Army Commendation Medal (ARCOM) and a Purple Heart.

Soon after retiring, he contacted the U.S. Paralympic National Team, and has been playing soccer with them ever since. In 2014, Sibayan was voted 2014 U.S. Soccer Disabled Athlete of the Year. Now he’s in Toronto playing midfield at the 2015 Para Pan AM Games for Team USA.

The field in which Sibayan serves and represents his country may be different but, his continued love, respect, and dedication for his country remains strong. Gavin Sibayan is a hero no matter the field and a true inspiration to all.

Thanks to the wonderful world of Internet and email I had the distinct of honour of posing some questions to Gavin:

CM: Can you talk about what it means to you to be competing in Canada for the Parapan AM Games?

GS: It means a lot to me to make the roster for the Para Pan AM Games and to have a chance to represent my country. Every time I put on the jersey with the U.S. crest on it, it feels like putting on my ARMY uniform and going to work for the United States again.

CM: Are you able to have friends/ family watch you compete? Who is coming?

GS: My family will be watching online and my dad and aunt are coming to Canada to watch me play.

CM: Can you describe what it is about your sport that you love?

Photo via
Gavin James Sibayan; Photo via gosanangelo.com

GS: I love the thrill of competition, playing with a team of talented players and friends – that makes it even better.

CM: Can you talk about your typical training day?

GS: In camp, we train twice a day, the morning session is ball skills and movements and the afternoon session is games and movements. At home I practice at Red line Athletics where I have a personal trainer who works with me on ball skills. Then I have another trainer who works with me on mobility, strength and conditioning. I practice at least three hours per day and it’s great doing something I love.

Photo:
Gavin James Sibayan; Photo via: blogs.va.gov

CM: Would you say there are challenges specific to brain injury that you have to deal with as an elite athlete? If so, what would these challenges be?

GS: The challenges that I have would be balance, feet coordination – these two are the big ones.

CM: It’s often said that elite athletes are inspiring – and it’s true. Do you have advice or a message you’d like to pass on to aspiring Para athletes?

GS: No matter what challenges you face in life you can always adapt and overcome them and drive on. They might be hard, but if you dig deep down you can strive to be the best athlete out there.


celia-mCelia 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; certified Life Coach, certified Law of Attraction Practitioner and currently working on her Mind Calm Meditation certification. Learn more about Celia and be inspired: visit www.HighHeeledLife.com or www.CeliaMLifeCoach.com

US para-cyclist Jennifer Schuble shows us her toughness

WRITTEN BY: MERI PERRA; INTERVIEW BY KAROLINA URBAN

If anyone does, Jennifer Schuble exemplifies the strength and never-quit, give ’em heck attitude of para-athletism. The U.S. army veteran has sustained two brain injuries – one from an accident during a hand-to-hand combat class at the United States Military Academy at West Point – and another from a car crash in 2002. Then, in 2004, she was diagnosed with Multiple Sclerosis. Photo credit: Brian Hodes

Photo credit: Brian Hodes

“I grew up in a family of four kids, so it was like the survival of the fittest, you couldn’t just sit there,” Schuble said. “If you wanted to have a chocolate chip cookie you better go get it or else you won’t get any.”

By 2007, Schuble won her first world championship para-cycling title. She holds the Para Pan Am record for 500 meters race in para cycling, and fits in elite training in between working full-time at Mercedes-Benz. She also happens to have a Master’s degree.

“I learned a lot of time management when I was at West Point,” Schuble said. “I was a student, and tri-sport athlete for them. It was a very intense school … I really had to schedule everything and time manage.”

At the Toronto Pan Am Games, so far, Schuble has ranked an impressive fourth place in cycling track. She also a silver and bronze medal from the 2012 Paralympic Games and a gold and silver medal, and two world records, from the 2008 Beijing Games.

Photo: Jason Nuttle
Photo credit: Jason Nuttle

“Anytime I can race my bike I enjoy it,” Schuble said.

As an athlete with a brain injury, Schuble says balance is a big challenge in her sport. As an example, Schuble says she can’t take corners as high as other para-athletes. Cycling requires a lot of strategy, which can also be a challenge.

“I was [the only athlete with a brain injury on the team] for the longest time and it was difficult,” Schuble said.

Schuble races in the most functional para-cycling class, C1, though she says she qualifies for a lower class based on the MRI of her brain. She credits much of her recovery and abilities to the rehabilitation she received at the Walter Reed National Medical Centre.

Jenny Schuble competing at the World Championships
Photo credit: US Paralympics

“They taught me a lot of time management skills and ways to remember things, keep track of things,” Schuble said.

Currently Schuble trains six days a week, and manages to hit the weight room three of those days. She spends her weekends at the velodrome working on explosive starts.

“Basically all I do is work ride my bike, eat and go to bed,” Schuble said. “And play with my two bulldogs.”

Meri Perra is the communications and support coordinator at BIST.

Marie-Claude Molnar: bronze medal Paralympian hits Toronto for Para Pan Am Games

BY: KAROLINA URBAN

Canadian para-cyclist Marie-Claude Molnar grew up with a dream of representing Canada at the Olympics. At the age of 29, that dream became a reality when she won a bronze medal at the London Paralympic Games.

“It was incredible,” Molnar said about arriving in London. “The first thing that I noticed when we got to the Athletes’ Village, I told myself, ‘wow what I am doing here?’ I was just amazed and surprised to be surrounded by elite athletes.”

Marie-Claude Molnar
Marie-Claude Molnar

Now the St.-Hubert, QB resident is well into her second-round at the Para Pan Am Games, where she ranks seventh in the cycling track events and has come in fifth at the women’s 500 meter time trial C1-C5 finals. Molnar will be competing for a final time on Thursday, August 13th.

“I think everybody can try something that they love and see if they succeed at it,” Molnar said. “That’s the only way to find out, to try.”

What makes Molnar a particularly  inspiring athlete are the challenges she has faced and how she has overcome them through her work ethic and determination.

Molnar suffered a brain injury after being struck by a car in 2005. Soon after, with her love of sports guiding the way, she contacted Lyne Bessettea Canadian Olympic cyclist, who put her into contact with National team coach Eric Van den Eynde, who she continues to train with to this day..

Marie-Claude Molnair“I started training three years after my accident. Since I was very young I wanted to be an Olympic athlete in ice hockey ,” Molnar said

Perhaps it’s Molnar’s outlook on life that gave her the courage and determination to pursue a cycling career.  There is an inherent dedication and sacrifice which comes with being a para-athlete and representing Canada. Molnar trains five to six days a week, incorporating two or tree specific types of training into her schedule.

“[One type of] training [I do] is where you see what level you are at, and then you go push your limits.” Molnar said.

But despite the long training hours, for Molnar, and many athletes like her, sports are a get-away from the demands of life.

Image via
Photo:  paramanic.ca

“What I love about cycling, every time I get on my bike, I forget everything else,” Molnar said. “For me cycling is liberty. [When I ride] that’s all I can think about.”

Molnar says as a para-cyclist with a brain injury, she faces specific challenges in her sport.

“The main challenge is racing strategy, “Molnar said. “Like taking the right wheel or riding the fastest line, knowing when to attack or when not to.”

Molnar says her sport has become more competitive since the London Games, as more countries have begun to develop their para-cycling programs. For Toronto 2015, there’s the added bonus of being in her home country for the Games.

“Having the chance to compete at home in front of our fans I’m pretty sure it’s going absolutely incredible. The energy is going to be crazy,“ Molnar said.

 Karolina Urban is a former University of Toronto and Canadian Women’s Hockey League player. Currently she is a PhD student at the Concussion Centre in Holland Bloorview Kids Rehab Hospital.