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By Vicki Melville Bathurst
I attended the Brain Injury Conference at the University of Victoria this past June. It was a one-day workshop on recovery after brain injury organized by The Cridge Centre for the Family and the University of Victoria. It gave staggering statistics on brain injury including an estimation that 1.3 million Canadians are living with an acquired brain injury. It is more common than breast cancer, HIV/AIDS, spinal cord injury and multiple sclerosis combined. Over 90% of people who have a brain injury do not return to work and it is estimated that approximately half of homeless people in Victoria have a brain injury. It is described as an Invisible Epidemic.
One of the handouts cited that, “A traumatic brain injury can significantly change a couple’s relationship” and even with milder head injuries such as concussions, the divorce rate ranges from 48% to 78% after one party has suffered a head injury. And after severe, moderate or complicated injury both survivors and their partners must often change every aspect of their lives together. Brain injury survivors often have new personality traits, physical challenges, fears and limitations. These changes have led many spouses to say they feel like they are “married to a stranger.”
These comments describe very accurately my reality after I had my concussion/brain injury over ten years ago. In fact, it was only a few months after my accident that I overheard my husband of almost 30 years say exactly the same words – he didn’t know me anymore, I had become a stranger. And it was only a few years later that we became just another statistic of a failed marriage after a head injury ending in divorce.
My accident was nothing like the trauma that the four speakers at the conference experienced, not even close. By the evidence of the blood at the bottom of the street it appears that either through sheer panic from a slip on the gravel while turning the corner or user error riding my new bike, I must have catapulted over my handlebars landing on my head. If it wasn’t for my damaged helmet, there is little doubt I would be dead or facing traumatic brain injury.
I had an ambulance ride, x-rays, stitches for the gash over my right eye and spent the night in the hospital – and have no memory of any of it. To this day I still have no memory of that entire morning – or the twenty-seven hours that followed. Otherwise, I am able to function normally, though as I age, my recall of language structure, and my forgetful mind often make me worry about what is normal for a healthy young senior – and what are the long-term effects of my concussion and those lost 27 hours.
I was one of the lucky ones. For Simon Paradis, Sara Hansen, Chris Tutin and Barb Butler, their brain trauma changed their lives, in an instant and forever. They came to the conference to tell us their stories.
In 2008, Simon Paradis, a professional musician who was finishing up a part-time job in construction and set to release a new CD, took a fateful step backwards off of scaffolding and landed on concrete below. His injuries were so severe the doctors told Kara, his wife, that there was a high probability he wouldn’t survive the night.
Through the horrors of ICU and subsequent three months of rehabilitation at GF Strong, Kara was always at Simon’s side. As the months blended into years, Kara began to write about their journey. In 2015 she published a book, fittingly called Fallen. She sees it now as her therapy, a tool for her grief and control over her new reality.
Kara realized through her research that Simon’s love of music would be key to his recovery. It was to be an arduous task. Simon’s injuries included hearing loss and in his early days he could only make small movements with his right side. He had to start by re-teaching himself how to hold a guitar. Slowly Simon began to play music again and he and Kara together wrote the lyrics for their first song, “Pain in the Night,” and their second song, “All We Hope for is Lost.”
Kara and Simon ended their talk at the conference singing together, “You Can’t Always Get What You Want” with the crowd joining in. Simon added his own words to the ending, “But if you try sometimes, you get what you need….. Like the Cridge.” The assistance and support received from The Cridge Brain Injury Services programs became a common theme this day.
Sarah Hansen, a mother with two young children, has perhaps the most shocking of all the stories. In 2010 she went into hospital for a neurological procedure and was expecting a 10 day period for recuperation – she ended up in hospital for four months and left in a wheelchair with a speech impediment, little to no feeling on her left side, and double vision. She could no longer work and is on long term disability.
For Sarah too, The Cridge Centre for the Family has played an instrumental role in her recovery. She spoke of how alone she felt until she came to The Cridge Brain Injury Services, where she connected with Janelle Breese Biagioni. She was given so much support and encouragement that it has given her life new purpose and meaning. She has completed an eight month online creative writing course through SFU and had an essay published in the Globe and Mail. She speaks no more of what she has lost, but rather what she has gained: time for art, writing and weekly horseback riding lessons with the therapeutic riding association.
Sarah has recently released her blog “Lemons and Living”. With her writing she wants to show people that life goes on after a trauma, not like it did before, but it does go on. In aspiring to make life a little easier and accessible for others with brain injury, Sarah shares her struggles and successes on her blog, www.lemonsandliving.com or visit her page on Facebook.
In 2003 Chris Tutin, an athletic 17 year old with a love for high risk sports, impulsively jumped onto a $20 motorbike he had been working on, and discovered much too late that the brakes were not working when he crashed into the side of the house at the bottom of the short hill below his home. Perhaps his story would be different if he had thought to put on his helmet. He speaks of his hopes and dreams at the age of 17 to build cars; he was mechanical, he liked carpentry and was artistic. His whole life was in front of him waiting to unfold.
After only 3 months post-accident Chris was sad to discover that his many friends were no longer coming by for visits. He says he understood that their lives carried on while he had made a poor choice and now has to live with it stuck on the sidelines in a wheelchair. It took Chris five and a half years to learn to walk again. With his mother by his side as he stands before us at the conference, he laughs at the words “walk again” as he describes it more like a controlled stumble where he could fall over at any time.
Chris’s strong sense of humour has helped him live with his brain injury. He now works with kids in schools to advocate for safety. He brought the crowd to laughter as he bantered with a woman in the audience who asked where he lived. “Why, do you want my phone number?” he asked her, while he spoke freely about wearing diapers. A sign in the centre of the hall which he posts when he speaks to school children reads:
INSANITY EDUCATION: Helmet or Diapers, the Choice is Yours!
Barb Butler and Erin Sommerfeld, a mother and daughter from Saskatchewan, shared the story of the car crash that changed their lives forever. It was 1993 and their family was driving to a summer vacation when they were hit by a semi-truck and their car was thrown 28 metres. Erin had a broken femur, and she started grade 4 in a full body cast and wheelchair; her recovery took 5 long years. Her mother remained in a coma for several months, and suffered moderate to severe brain injury. Both Barb and Erin have no memory of the accident, Barb only began to recognize her daughter 14 days after the accident.
Barb tells us her dream was to be on her vacation in the Maritimes, but she only made it to Ontario and there her life changed instantly and forever. Over twenty years later she talks about what it is like to live her life now with brain injury. She points out not only is it invisible, but also unique — no one else has the same brain injury. The fact of having brain injury is only one part, what you do with your brain injury is the important part. Barb lives her life now by these rules; to everyday do one good thing; to try to make her life mean something; to treat every new day as a treasure.
Each of the speakers — Simon Paradis, Sara Hansen, Chris Tutin and Barb Butler — had a choice: to give up or to make meaning of their new lives. From their heroic speeches, we heard how they have learned to thrive in the face of huge loss and hardship — each of them in their own way has learned to survive, strive and thrive.
Because of my own head injury and concussion experience, an interesting part of the conference for me was the speech, “Ways to Enhance Cognition after Brain Injury” by Dr. Brian Christie, a University of Victoria neuroscientist and researcher. Dr. Christie described how he observed Vancouver Canucks training staff using NeuroTracker, a 3D software program developed to improve performance in elite athletes. When Christie learned those players who had suffered from concussion didn’t do well with NeuroTracker, he wondered whether it could be used to gauge the impact of a concussion. Five years later, Christie and his students have used NeuroTracker to assess hundreds of individuals and his research has confirmed lower game scores by as much as 40 per cent for someone with a history of concussion.
I am excited to finally learn of new research on the brain. When I had my accident my doctor advised me there was nothing the medical system could do and besides, with no one to sue for the accident what was the point. Christie’s research at the University of Victoria mentions exactly this lack of knowledge as motivating his own research. Typical for many concussions Christie says, my doctor pointed out there was no brain bleed or anything visible on my CT scan. But Dr. Christie’s latest research is now discovering what’s affected most acutely upon impact is the brains’ ability to coordinate the complex interplay of nerve signals between the brains’ various regions. Christie and his team encourage people to join their Vancouver Island Concussion Project research project at the University of Victoria. My friend Gerald Hartwig, an extreme sports enthusiast who has had twelve concussions did exactly that. Gerald was so impressed with the improvement in his mental focus after enrolling as a research subject that he now financially supports Christie’s work.
Let’s face it, all of us have the potential to have a concussion or traumatic brain injury at any time and our brains are the computer centre for our entire existence. For me, the concern with my lost 27 hours, and for my new husband who has suffered from 3 concussions in the last 3 years, we think it is a responsible decision to participate In Dr. Christie’s study. We see this as an opportunity to become involved in leading edge research on the brain because we both know with our head injury histories that if either of us has another concussion it could possibly change our lives instantly and forever.
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