“I would like to help others in the community who have/had brain tumours and are having difficulty adjusting to their new reality, and giving them someone who has been in their situation to talk with.”
Our first story comes to you all the way from Whitehorse, Yukon, a place dear to my heart. It comes from a former colleague and good friend, a young man also dear to my heart, Joshua.
I first met Joshua in 2010 when I transferred from Yellowknife to Whitehorse. Joshua was the IT guru in our office and was seemingly shy. Little did I know what a wry wit and big heart was waiting behind that awkward exterior. Over the years we’ve known each other, I’ve been blessed to watch Joshua meet one hurdle after another with strength, humour, determination and a deep understanding of himself. This is not someone who has ever let discrimination or a lack of knowledge get in his way – instead he’s become a self-taught advocate and educator.
Meet one of my personal heroes in his own words:
“It all started in March of 1998 when I was 21, my right arm was getting weaker, and I was getting major headaches every day which I was taking Advil for, I was thinking at the time they were stress related, since I was in my last term of my first year in Computer Systems at the Yukon College in Whitehorse, Yukon, Canada.
Then In April of 1998, my right hand was getting harder to move, and when I tried it would shake. I then went to my doctor who told me it could be carpel tunnel syndrome so he told me to go to an occupational therapist in May.
The Therapist for the first part of May was testing how fast I could grab pegs, and put them in holes, and then she tried relaxing exercises.
Around the middle of May my right leg started to grow weak, and not work very well, and then at the end of May the occupational therapist gave her report to my doctor. I was called back to my doctor’s office, and since he was out-of-town, another doctor looked at me walk, and sent me down to Vancouver for an MRI in July.
I went down with my sister in July, since I was told I had to bring someone with me. I went to St. Paul’s hospital for my first MRI. I had to lie still for a 1 hour and half, as they scanned my brain. It was hard at first to lie still, but I managed, at least halfway through you get a bit of a break as they pull you out to inject a contrast into you, so they can see the brain better.
The Neurologist saw me the next day after the MRI, and told me that I had a brain tumour..
My sister cried but I did not, I just thought great, something to get out of my head to make me feel better. I was not scared of brain surgery but I was scared of talking with people, realizing that surgery did not scare me, I then decided to not let irrational fears control my life anymore. He then set me up for surgery with a neurosurgeon at Vancouver General Hospital
I then had to stay in Vancouver a week waiting for the surgery, I am not sure what was going through my mind that week. I was waiting in Vancouver away from home, my sister had to leave for work, so my mom flew down to be with me, and my dad and his wife flew down to be with me as well. I know that the week sure put things in perspective for me, at least I had family to keep me company.
I don’t remember much of the hospital stay, I do remember being checked in and I spent the night in the hospital before they took me to the surgery room, and gave me some anaesthetic.
After waking up after the surgery I could not move my right arm. I was rushed to a CT scan, and they found a blood clot had formed, so I had to be rushed back into surgery again. After I woke up, I was able to move my right arm and leg again.
After a few more days I was discharged and flew home, and a week after the second surgery the staples in my head were removed, and shortly after that the side of my head swelled up, and the doctors found that some spinal fluid had leaked there, it eventually went away, and now the left side of my head has a little depression in it, and the scar is very sensitive to weather changes, and bumps and knocks on the head, and sometimes it feels like someone is constantly pushing on my head.
I was also left with a weak right side, and my attention, memory and concentration are impaired. Also my brain gets overwhelmed when I am around loud noises, powerful smells, fast movement, and lots of people, so basically if there are lots of things happening around me at once, my brain cannot process it, and I get dizzy and nauseous.
After 18 years, my right side is still weak and I still have some anxiety and attention issues. I am on an anti-depressant that helps reduce the anxiety and the attention issues.
I am now at age 39 am now exercising more regularly by walking with friends or power walking by myself. I am also exercising my right hand to get it stronger, and working better with a gel ball, and using perler beads to help with the coordination in my right hand. To help with my anxiety about meeting new people, I am now interested in getting more involved with the Brain Tumour Foundation of Canada, and I am also reaching out into my community to see if I can connect with others who have or had a brain tumour, so we can share our stories and share tips and tricks we use to work or overcome the effects of the brain damage caused by the tumour.
I am hoping to get people interested in joining the Brain Tumour Foundation’s virtual support group, I have been attending for over a year. Also if I get enough interest I can see if the Brain Tumour Foundation will start an official Support Group in town, and also an official Brain Tumour Walk. I am planning on a walk next year which may end up being a virtual walk, if I don’t get enough interest.
I have walked for the Brain Tumour Foundation in a virtual walk I did in Whitehorse in support of the Yellowknife walk, and I also walked in the Vancouver Brain Tumour Walk to help raise money for the organization, and to get an idea of what is needed to get a walk started in the Whitehorse.
I hope sharing my story will get others to share their stories with me, since I would like to help others in the community who have/had brain tumours and are having difficulty adjusting to their new reality, and giving them someone who has been in their situation to talk with.”
To learn more about Joshua’s story and his efforts: Forming A Brain Tumour Support Group
To learn more about the Brain Tumour Foundation of Canada: Brain Tumour Foundation of Canada
To read more Canada 150 stories: Canada at 150 – Celebrating Our Diversity and the End the Hate blog
To submit a story for consideration: Contact Us