Hello, My name is Rob V. and I am a brain injury survivor. Every brain has a story, and this is mine. Before July 2012, I had as regular a life as most. I grew up in Orangeville, then went to Ryerson University (now called Toronto Metropolitan)for hospitality. I have worked at hotels and casinos in Ontario and Alberta. My last position was general manager at a retirement home at a Retirement Home. And then I got viral encephalitis, along with a stroke and a few seizures in the near future.
On July 19, 2012 I felt a little sick. My wife took me to the Huntsville Hospital where I was in and out for four days. Many, many symptoms were being looked at. I was not doing well and was slowly losing control of everything. I was at home July 23 when they called me to come back to the hospital as they received my blood results and I needed anti-virus medicine ASAP. After four days in ICU I was sent to St Michael’s Hospital in Toronto for nine days I’ll never get back. There are not many memories there. I do remember getting a needle which hurt. I remember a walking lesson that hurt and I remember not knowing how to use the help me button, with a bad result. However my wife Colleen has this to say:
“Rob’s recovery was a difficult time for him and a scary time for me. Each day for Rob was a new challenge, but each day also brought a new level of recovery. In the span of nine days he went from not being able to walk, talk or feed himself, to being able to do all of those things. While he is not exactly the same there are aspects of Rob’s personality that never changed, his work ethic and determination to get better even when he was discouraged with his progress. My message to anyone who may be in the position I was as a caregiver is don’t give up! Recovering from a brain injury is NOT a sprint, it’s a marathon”
I’m back in an ambulance to the Huntsville Hospital for 12 more days. I still didn’t understand much and still didn’t know how to use the help me button. Eventually I could leave for the day. My first shower alone was the biggest mess up ever. Water, hot, cold, shower, soap: it all looked familiar, but where do I start? I was offered help. I said no, but should have said yes. After nine days there was a meeting with me, Colleen, my parents and the doctor. The meeting didn’t go well. I wanted to go home and they started talking about another hospital. I was very angry, to say the least. On August 14 my doctor removed a 16-inch tube thing from my arm and sent me on my way. I was then at Bridgepoint Rehab Hospital for eight weeks.. There were many therapists working with me and, and I did have many very funny run-ins with others at rehab.
In my sixth week there was a meeting with Colleen, my mom and dad, the therapists and the doctor. I set up the seating so I could see everyone. The therapists speak and say that I’m good at occupational and speech and physio. Yay! Smiles are happening and I think graduation is on its way!
Now it’s the doctor’s turn. He pulls out the brain thing [model] and pulls it apart and starts making comments. All I see now are notes being taken and tears showing. The last thing I remember is “Rob needs to stay seven more weeks.”
“What the heck,” I thought. Did I fail? I thought I did. What if this is ‘as good as it gets’?
My favourite therapists took me on trips to the Eaton Centre, grocery stores, on the bus, etc. Apparently I had a few things to work on, probably one of the reasons I had to stay a little longer. Learning was like being in school. We talked about lots of “how to” stuff like phone calls, spelling, counting, memory, discussions, names, writing stuff down. It was endless. So much more happened: 15 weeks was a long time. I was home from rehab at the end of November 2012. I was happy to get out of there and was told all is good, good luck, keep working at stuff and enjoy the “new normal”. At that particular moment I hated the term “new normal”.
When I left Bridgepoint they started the paperwork for me to get my license back. So after lots of work with the Skill Builder Rehab Centre I got my license back in March 2013. It was time to drive again. I felt the same as when I was 16 and got my drivers license. I thought I was almost better.
In May and June, I kept busy. Lots of lists and plans happening. I’d had my license back for 3 months and I think I am at 80 % recovery. Now I know 80% will never happen, but it slowly becomes more acceptable.
So the long weekend is here and we are off to a cottage. Fun times are happening, and drinks are still part of the fun. At some point on the Sunday night, I couldn’t talk for a short period of time. This happened a few more times over the next few days, which turned out to be mini seizures. On July 7, 2013 bad things happened again. I wake up in the hospital and the first thing I remember is the doctor saying no driving again, or drinking. My brain is moving backwards because of the seizures. So here we go again.
I saw my doctor and neurologist many times along with having six MRIs. I was set up with Closing the Gap home meetings, and continued to see my speech therapist for two more years. One funny thing is my high school son drove me to some meetings before I got my license back!
In October 2013, my speech pathologist set me up with Brain Injury Services (BIS). Not known to me at the time but BIS was there to help with the start of the journey.
In November 2013 I sent out 40 Christmas cards. I was told that it would be good for me, even though I thought 2013 wasn’t my best year.
The best thing ever was I finally received my prescription for medical marijuana , which has helped my life since. It helps my stress, anxiety and many more things.
2014 is here and my license is back. The first thing I did was apply as a Volunteer Cancer Driver. I was so nervous when I told them my story. The only question was “do you have a license”. We got along great! In February I did my driver training with an 85 year old man. In addition to volunteer driving, I took care of daffodil donation boxes. I have many stories , both happy and sad. At that particular moment I thought I was ready for a full-time job. A learning part for me was that I like quick get-togethers with people. Short drives were the best. When I was out for more than three hours it took it out of me. Driving helped me understand my personal challenges: three busy days take six to recover. Two weeks in a row slow me down more and a third week in a row is too much. What I really learned was even when I’m in total control of what I do, I still mess up. It took me a long time to accept this. Challenges are tough on a daily basis.
So in January 2014, home meetings started with Brain Injury Service. House meetings were good. There was a fair amount of teaching stuff , but I also know I was given the opportunity to tell personal stories, probably over and over again. Discussions were extremely helpful and honest. I didn’t listen to all the ideas we discussed, but I now know why BIS had to continue to be honest with me. I had 3.5 years with BIS home meetings, and in The final meeting in June 2017 talks of challenges, and lots of personal stuff. It felt like grade 13 graduation.
My first BUS group meeting was door-opening for me. I really wasn’t expecting anything, or I didn’t know what to expect. It’s funny when you meet some new people. There have been a few new ones arriving at group meetings and I thought they were speakers. You just never know who has a brain injury. I remember when a new person came to their first group meeting. I was happy to share and answer any and all. The last question was when did all this happen to me and the confused and wondering look when they realized how many years I’d been there. The same darn feeling I had at my first BIS meeting. One very good thing about BIS was the good “brain friend” group we started. We got together lots over the next few years. We were all at BIS at different time frames which makes it very interesting. We were all at BIS for different reasons which makes it very interesting. This was the start of a great friendship.
In 2018 reality is kicking in. I was given a senior dog and it turns out it was perfect timing. Dogs help with my anxiety among other things. Looking back, a few years ago I got an earring. I felt it was a change from my previous life. I also got a few tattoos for the same reason.
So the last 11 years have been a bit of a rollercoaster ride for me. There were a few times I could have gone off the tracks, but I didn’t.!!! That being said, there have been some good times, some bad times, some funny times, and lots of messed up times in between, but I’m still around!
If you could go back to when you first acquired your brain injury and tell yourself one thing, what would that be?
I would tell myself to be a little more patient , and positively accept the new lifestyle and different challenges.
What would you like people who don’t have a brain injury to know?
They really shouldn’t say “I know how that feels” because they don’t.
Thanks for listening!
