I Am the Face of Brain Injury – Stephanie, Nancy & Shawn

Stephanie’s Story

One of my favorite quotes has always been “Life is 10% what happens to me and 90% of how I react to it.”steph hutton

For my first 29 years, I faced life challenges with hard work and a positive attitude. However, when acquired brain injury (ABI) put the brakes on my life four years ago, I faced a situation where my usual hard work reaction was the least helpful and sometimes not even possible.

It was July 2011. I was working in Ottawa launching a radio station when a bicycle accident left me with a broken rib and finger, a black eye and an mTBI, also known as a concussion. The emergency room doctor told me about a website I could look at to learn about concussion but provided no clue that this could be a life changing moment. I went home convinced I could figure out how to recover and be back to normal as quickly as possible. As the days went by it became less and less clear what my reaction should be.

Not understanding the implications of a concussion, I floundered for 1-1/2 years, trying to work. I thought I was losing my mind—I didn’t connect my headaches, brain fog and dizziness to the accident—so in March of 2012 I moved back to London, where I was from originally. On the very day I was to start receiving concussion care at Parkwood Institute’s Acquired Brain Injury (ABI) program, a sign fell on my head resulting in a second concussion. My ABI therapists are helping me as I learn to cope with my mTBI. When the rest of the world feels cold and harsh, the ABI team is like a cocoon. Their thorough understanding of ABI and knowledge of what it takes to help you get your life back is priceless.

I have now adopted a much slower pace of life to cope with my injury—switching between tough cognitive tasks and rest. Early in the process, the fog lifted just enough to make it clear that life would never be the same for me. Don’t get me wrong, I am grateful for my life. It is just that at times the list of things I can’t do or will never be able to do again piles high like a threatening Jenga stack. It’s tough to imagine a future where you can’t fully depend on your brain. One of the most therapeutic benefits was meeting others with ABI, seeing people suffering with the same things I am. It was these relationships that first started to form what action was possible. I watched how much some struggle with letting go of their old lives and how much anger can be built up because of the injury.

When I heard about the OBIA Peer Support Program, I knew the healing part of my therapy could finally begin. The program matches persons with lived experience with an individual who is living with the effects of acquired brain injury and is looking for support. The matches are based on similar experiences, needs and personal interests. As a Peer Mentor, I provided weekly phone support for a woman recently diagnosed with ABI. She was so confused and fed up with not feeling like herself. She felt that some of her family and friends didn’t even believe that anything was wrong with her. I could hear myself in her words. Being a Mentor was like therapy for myself, as I was able to bring some comfort to another person in this very confusing time. That was the root of what is now my personal mission—to raise awareness about brain injury. Even if ABI can’t be seen, it is very real. Without visible symptoms, sometimes it’s difficult for people to understand. It’s so frustrating when people say “But you look great!” after I tell them I have a brain injury.

I will admit, before my bike crash, I assumed persons with brain injuries were too ill to be out. I assumed they would be in a wheelchair. I’m ashamed of my lack of empathy now. I drew on my pre-ABI life to help me raise awareness about the “face” of brain injury. Having worked in radio and TV for 10 years, I approached colleagues at Rogers TV who helped me create a public service announcement in the form of a 30 second video. The purpose of the video is to create a broader understanding of brain injury and to let people know that not all brain injuries are visible. Through Parkwood Hospital and the Brain Injury Association of London and Region, I recruited other people living with ABI to bravely represent the face of brain injury in the video.

“I am the face of brain injury.” As my peers announced this tag line, I felt a shift. It was so inspiring to experience my peers owning their injury. I was on the verge of tears during the entire taping. Deep inside it was clear that just saying the words gave them, us, a sense of control in this uncontrollable time. Powerful. “I can only dream that this video will help at least one other person on this confusing brain healing journey.”
You Tube video: I am the Face of Brain Injury

Nancy and Shawn’s Story

It has been almost 7 years to the date since Shawn’s motor vehicle collision and it has been a challenging journey, but the struggles have been worth it. After 5 years of intense rehab therapy, we decided to make the move from Cambridge back to Shawn’s hometown of Kingston. It seemed like the most natural progression to return to the city he loves and where most of his family and friends still live.

One of the biggest components of his recovery that was missing was the social element and just being around people that know and love him and see past the deficits from his brain injury. We both couldn’t be happier since we moved because we felt so isolated and alone in Cambridge and it took a toll on both of us. The lack of social life in Cambridge was the missing piece in our lives so we knew it was time to take the plunge and give up the fantastic professional support we had. We needed to look to the future and decide how we wanted to live our lives in the real world. We built a beautiful fully accessible home and moved our family to Kingston in the summer of 2013. We have had many ups and downs trying to put together a new rehab and support team in a smaller city with fewer resources, but we have never regretted the decision. We couldn’t be happier with our new home and how things have worked out and seeing our friends on a regular basis and just having fun. As Shawn would tell anyone, there is more to life than just doing rehab all the time. Life needs to be lived.
Nancy’s Blog – The New Us…Life After a Brain Injury (http://lifeafterabraininjury.blogspot.ca/)

A coma is nothing like you would imagine or how they play it out on TV. There’s no sudden arousal, there’s no talking to you and completely comprehending everything going on. I think the coma was the worst part, even though early on the doctors said that Shawn would wake up from his coma, they had no idea when. The initial Neurosurgeon was the one that had told us on the 2nd day that due to the locations of the brain bleeds, in his opinion, Shawn would wake up. However, he would have deficits in motor function and memory. Sounded pretty simple but that was really before they knew the full extent that the Diffuse Axonal injury and the Hypoxia (lack of oxygen to the brain) would affect Shawn long term. That particular doctor I was very impressed with, probably because his news was leaning more on the positive side. The next Neurosurgeon that came on the rotation reviewed Shawn’s CAT scan and believed that his deficits would be extremely severe and placed him on the low level of outcome—hated that guy! It seemed every time you started to feel good about how things were going, someone would come along and just pull the blanket right out from underneath you.

Living with a constant knot in your stomach definitely takes such a huge toll on you both emotionally and physically. I am amazed that our baby survived and my pregnancy continued because the amount of stress was overwhelming. My doctor had told me that the body has an incredible way of protecting babies from outside stresses and she was right.

It was right after my first prenatal visit with her, just 6 days after Shawn’s accident that I learned of my first real life coma story. It’s kind of amazing the way it happened, but after that appointment I asked Shawn’s sisters to take me to Chapters book store so that I could find a book on brain injury. We walked in and there was a poster advertising a new author that had just written a book about his experience recovering from a brain injury!! What were the odds that this book would have this author coming to this book store in 2 days to sign copies of his new book?? I bought a copy and started reading and couldn’t believe it because this man had been in a car accident about 10 years earlier and had been in a coma and here he was writing a book. It gave me such hope and the more I read I learned that he was in a very serious car accident and his coma lasted about 3 weeks and he had to learn how to walk and talk again. Meeting that man in person and hearing his story gave me such inspiration when I needed it the most. That was not the last time I heard about a coma story from someone I met; it seemed like they started popping up out of nowhere. The priest that came to give Shawn a blessing was also in a coma when he was child for about 3 weeks from a bicycle accident. The clerk at a retail store told us about her relative being in a coma and they all seemed to be around the 3 week mark when things turned around.

Well, it was a little over 3 weeks before Shawn officially was considered “out of the coma.” There was no “hey, how’s it going” or “what happened” from him like you see in the movies, it was a simple eye opening that lasted just a split second and that was him coming out of the coma. It started off so slow with his eyes opening for a second until weeks later he had them open for 45 minutes straight and that was very exciting. His eyes may have been open but there was no recognition and he was never tracking or following anything, he just looked straight ahead. He never opened his eyes when you would ask but just spontaneously for a short time, sometimes only once a day and sometimes more. Regardless, I sat by his side and talked to him and told him about what was happening and who had visited or I would read him a book or put his iPod on for him. Whenever his eyes would open, I would get right in his line of sight and even though he didn’t seem to see me, I knew he did and I knew he knew I was there. Once in awhile he would squeeze my hand and even though I was told it was not “purposeful” I felt like it was and that he was letting me know that he was there and just to give him time.
Most people don’t remember their coma so it’s hard to say what exactly they hear but in Shawn’s case we knew he was listening and trying to show us that he was. In one situation, a doctor ignorantly spoke to us in Shawn’s presence about his lack of any real recovery and to expect the worse, his heart rate raced as he was listening to everything that man was saying.

Other than the times he would squeeze my hand, he actually showed some movement when an old friend that he knew from childhood visited. It was within that first week and his good friend Roy was speaking to him and Shawn actually lifted his right hand up in response to Roy’s voice. Roy was ecstatic and he came back in the waiting room saying, “He’s in there, my boy is in there!!” None of this was ever given any regard by the medical staff, as they felt it was all reflex, they just didn’t know who they were dealing with. Shawn is/was a fighter and it was him trying to let us know he was coming back to us.

I had read so many brain injury stories trying to get an idea of what to expect but none of them ever really addressed the coma. I think that was largely due to the survivors writing those stories so that wasn’t a time they remembered and could only recount what they were told. I remember so that is why I want to share this with everyone and also share with Shawn, who follows this closely because he too wants to gain more insight into what happened back in 2008. So as I mentioned, he came out of the coma after 3 weeks and it was a long long process before he was able to look at me, I mean really look at me and see me and show he knew who I was. The first time he actually watched me walk across his hospital room, we had long left the trauma hospital and he was repatriated back to our local community hospital, which was 6 weeks after his accident. Some of the great ideas we had been told or read about back during the coma were to not only talk to him but also heighten his other senses with smell and touch. I would find things that I knew had stronger smells, like cinnamon, and also smells that were familiar to him, my body lotion for example. To this day the smell of Bath and Body Works White Tea and Ginger body lotion reminds me of the ICU and that hospital, whereas before that it was my favourite smell. ???