InFocus Magazine

Chris Tutin is slightly unsteady on his feet as he stands to address a group of people at an open house hosted by Vancouver Island Vocational and Rehabilitation Services (VIVRS). He has a nerve condition called ataxia that affects the right side of his body, resulting in uncontrollable muscle spasms and the need to constantly move to maintain balance. He raises his left arm and flashes a big smile, to get the crowd’s attention. And then, as the event’s honorary guest speaker, he begins to tell his story.

Tutin speaks slowly and annunciates each word very carefully. Even so, we still have to listen attentively to understand what he is saying. A traumatic brain injury he suffered in 2003 has affected his ability to speak clearly and caused the ataxia. Fortunately, it has not diminished his sense of humor. Everyone in the room falls silent, mesmerized by the courage, wit, and intelligence demonstrated by this extraordinary young man.

He is only minutes into his lecture when I realize that a survivor, not a victim, stands before me. And I am reminded to be ever grateful for my good health.
Tutin was a 17-year-old Grade 11 student living in Powell River at the time of his accident. He had just acquired a 250 Kawasaki dirt bike and was tinkering around with the engine to try and get it running.

“I never made a conscientious decision not to wear my helmet,” Tutin recalls. “I was excited, and I simply forgot. I attempted to jump start the bike by pushing it down a big hill. On the third try, it worked. The engine kicked into gear, and I was off! I was going pretty fast by the time I neared the bottom of the hill, so I backed off on the gas… and then realized that I had no brakes.

“In the hope that I could avoid hitting any cars, I turned down my neighbor’s driveway, where I risked hitting a sheet of ice, ramming into three parked cars, or ‘bumping’ into their mobile home. I put the bike in neutral and braced for the impact of hitting their house. I never took into account the speed that I was travelling and, trust me, it was no small bump! When the bike slammed into the house, I was launched headfirst over the handlebars and knocked unconscious.”

Tutin was transported by ambulance to Powell River General Hospital where it was determined that his head injury was extensive. Within about a half hour, he was being airlifted to Vancouver General Hospital. Normally, there would have been several hours wait for the air ambulance, but a man waiting to be transported for a hip replacement recognized that Tutin needed to get to Vancouver more urgently than he did. He was in a coma for three weeks and not expected to live. If he did survive, his family was told that he might never walk or talk again. It would take years, but eventually he would prove the doctors wrong.

“I was in so much pain when I first woke up, but I was pretty optimistic,” he says. “I couldn’t comprehend the extent of my injuries and just how much my life would change. And how it would affect the lives of my mother Linda [who was a single mom on disability at the time], my younger brothers Justin and Shawn, and my little sister Amber.

“It was six months before I fully realized that my mistake had irreversibly changed everything forever. For all of us. My days became a routine of physical and speech therapy, all the while depending on other people to help me with everything. And I mean everything! Imagine how it felt for me to be a 17-year-old in a wheelchair and having to wear a diaper! I tried to make light of being forced to discuss bodily functions in front of my friends and family. I was so embarrassed but would joke that I need ASS-istance. All you can do is laugh, right? Thankfully, once I was out of ICU and went to adult rehab, I was able to stop wearing the diapers… but it still was pretty awful.

“Eventually, as a result of my stupidity, my family was uprooted from our home and had to move to the Comox Valley because there were not sufficient support services for me in Powell River,” adds Tutin.

A shadow of remorse fall across Tutin’s face and the sadness in his voice is evident when he takes a deep breath and explains how “your lifestyle goes down the toilet” after a brain injury. For the next four years, while he struggled to learn how to stand and eventually walk again, he also struggled with depression, leaving his home only for medical appointments and physio. While he is ever grateful for the support of his family, believing that being at home with them rather than in a group home made all the difference in his recovery, he still suffered.

“All your so-called good friends pretend that nothing has changed,” says Tutin, “and for a while, it may appear to be the case. But I was not able to walk, much less go and run around town with my friends like I used to. The only option was for them to come to my house.  They came, at first, but life goes on and their visits became less and less frequent. I sat in my wheelchair, alone in my room. What I hated even more than losing my friends was losing my independence and freedom at such a young age.”

To make matter worse, the young man who once aspired to be an auto mechanic was coping with the challenges of now having a poor memory relating to events and time. He laughs (again) when he explains how he sometimes brushes his teeth multiple times a night because he can’t remember if he has performed that nightly ritual.

“So, I hop out of bed sometimes three or four times a night because I can’t remember if I brushed my teeth or not.  The next night I think, ‘Oh wow! Did I brush my teeth three times last night?’  Then I start thinking ‘Have I brushed my teeth tonight?’  I end up getting up and brushing my teeth again. This scenario happens for many daily tasks and, unless someone is there to verify whether I had done it or not, I honestly couldn’t tell you. It is better now than it used to be, but is still a challenge.” He laughs again. “On the bright side, I have very clean teeth!”

Fast forward to 2015, and Tutin is now 30 years old. He has proven the medical community wrong. In 2004, he started giving lectures at hospitals and high schools about the life-altering effects of brain injuries and the importance of wearing a helmet. In 2007, he finally learned to walk again. He gained strength, balance, and confidence by mowing one of his occupational therapist’s lawns.

“Pushing that lawnmower on her acreage helped get me out of my depression,” he says. He has been through every imaginable government supported rehabilitation program available to him and he is doing remarkably well, all things considered. He lives independently on social assistance payments of only $904 a month. He has daily support workers who take him to the gym five days a week, help with things like shaving and grocery shopping, and drive him to appointments and speaking engagements, like the one at VIVRS.

When I meet privately with Tutin and his caregiver, Cole Taylor, a couple of weeks later, I learn just how important these speaking engagements are to him.

“Just because I have a brain injury, doesn’t mean I can’t have a dream,” he says. “I am tired of people thinking I can only do menial jobs or volunteer. I know I can’t be a doctor or anything like that, but I still feel that I can still make a difference and make something of myself. I want to take my message of brain injury awareness and the importance of wearing a helmet on the road and become a professional speaker. When I was in Grade 10, I drew a picture in Social Studies and called it ‘Insanity’. My situation is pretty insane. For one thing, I can’t draw anymore, so that’s why I called my business Insanity Education.”

The objective of his community-based outreach program is to save lives by bringing brain injury awareness and prevention to the public through personal experience and fact-based information. The sessions are offered as one-hour presentations at local schools, events, business conferences and seminars.

Beverly Campbell, a case manager from the Comox Valley Head Injury Society, first met Tutin when she was working as an employment support consultant at VIVRS. She champions his initiative and is helping him look for sponsors. Coincidentally, Tutin’s mom is now a case worker at the Head Injury Society and she is extremely proud of all that her son has accomplished.

“We were trying to find Chris a traditional job, and he kept saying. ‘No, I have something I can do well. Come and hear my talk,’” explains Campbell. “So I went to St. Joseph’s Hospital to listen to him address a group of teenagers and I was blown away! The way he connects with people is truly amazing. When Chris speaks, people listen. It is very cool to watch. He gets their full attention.

“My goal with Chris now is to him find sponsors, to build a business plan, and support him as he moves forward to get more paying speaking engagements,” she adds. “Chris offers incredible value, and I agree with him. Why should he keep doing this for free? The amount of money his message potentially saves the system is huge. The cost of supporting an individual with a brain injury throughout their lifetime is phenomenal. Chris’ message is all about prevention. It is an important one. He is a very, very smart man. Having a brain injury doesn’t devalue his message.”

Sadly, it is not the brain injury, but financial resources that are standing in the way of Tutin and Insanity Education becoming a success. When you live on only $904 a month, and are only paid an honorarium to speak (if anything at all), it is impossible to come up with the money to start a business.

Tutin is excited that Bernie Hansen and the team at ABC Printing in Courtenay have agreed to make him a promotional sign to use at his talks. I have volunteered to help him with promo materials and have volunteered a friend to help with graphic design. He aspires to have a skateboard or motorcycle company—anything to do with head injury prevention—to come onboard as a major sponsor. He has also started a Go Fund Me page (www.gofundme.com/insanityed), where he is hoping to raise money to purchase a camcorder, projector and hands-free microphone, as well as promotional materials, clothing to wear at presentations, caregiver and travel expenses, and a contribution toward a fair wage to make this all possible.

“People need to understand that not everyone with a brain injury is cognitively challenged,” adds Tutin. “Sure, every brain injured person obviously has his or her own challenges but that’s to be expected. We are able to socialize, to make friends, and have a fairly normal life but are often treated as outcasts. It makes no sense to me. I have done my share of volunteering. I am hungry to get out of the poverty I live in. I want to make a difference.

“If my presentations can save just one person from suffering the hell that I have lived through—and continue to live with—then all of my efforts to promote helmet use when riding a motorcycle or a bike, and while participating in various sports, will have been worth it,” he concludes.

“You don’t wear a helmet to please your parents. You wear a helmet to save yourself. If you think it doesn’t look cool, think about how ‘uncool’ you could look wearing a diaper and sitting in a wheelchair.”

Find Tutin on Facebook at Chris-Tutin-Insanity-Education, or visit his blog at brainbusted.wordpress.com