My name is Jonathan M. 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
