Two and a half years ago I participated in 1400 km of the Sea to Sea bike ride. In drumming up personal sponsorship, I had focused on developing awareness for people who live in poverty due to hidden disabilities.
Little did I realize that 18 months later I would be counted among those with a ‘hidden’ disability. A year ago I was involved in a motor vehicle accident that left me disabled. A disability that was later diagnosed as mTBI (mild traumatic brain injury) leaving me unable to perform my work duties as an elementary school principal.
Being that is was an acquired injury, I did not realize to what extent it was and would affect my work. During the first several weeks my symptoms continued to worsen. After struggling to work part time for a few weeks I was persuaded that I needed to stop working.
The disability has changed my life style dramatically.
I would normally go to bed because I was sleepy, not because I was tired. Now I often experience fatigue throughout a significant part of the day.
Headaches for me was a very rare occurrence. Now I’ve gotten used to it being there almost on a daily basis.
Two years ago I had the endurance to cycle 135 km in a day, doing 50 km on a unicycle. Now I feel good if I manage 5 to 10 km at a moderate pace.
Each year on Labour Day weekend I would join my family at the Shelter Valley Folk Festival for 3 days of music. Now I can’t listen to live music longer than 30 minutes without having my brain shut down.
It’s an injury that is hard to measure. In one area the specialist gave me a general indicator. After completing a battery of assessments one of the things that was determined is that my memory is now function at about 50% of what I was capable of pre-accident.
The injury continues to affect me physically, behaviourally and cognitively. If I attempt an activity that leaves me cognitively challenged, it takes me from 1 to 4 days to recover. During the recovery time I experience a wide range of physical challenges. It’s amazing how the brain and the rest of the body are so closely connected.
If you see me in town on a good day, you can’t tell that I’m dealing with a disability. A colleague told me recently that I seem to function normally. She was right. When there are no demands and pressures a day can seem quite normal. However, that is not how a day normally goes, whether one is at home or at work.
What has been very clear in my experience is the incredible level of support and understanding I have received from my community; that is my church community, my school community and my family. Jane, my wife has been incredibly patient, understanding and supportive, day in and day out. I can’t begin to list all the extra duties she has willingly taken on.
In response to the support I am experiencing, I would like to explain what the personal challenges are. The problem is I lack the ability to explain it, because I don’t really understand it myself. It’s just how it is. It’s not headaches that happen – it’s the underlying issue that partly shows up as a headache, among other symptoms. The headaches are a gauge. But it’s like a gauge that hasn’t been labelled or even calibrated.
My initial goal following the accident was to still go ahead with my plan to cycle from Jasper Albert to Montana in July of 2015. I realized after a few months that I would have to abandon that plan. I couldn’t even manage a 2 hour ride in the car. How could I even get to Alberta? My goal at this time is to cycle all or part of the 2017 Sea to Sea. That’s a year and a half from now.
While recovery seems to move at less than a snail’s pace, the encouraging thing is that there is improvement. While this experience has made me empathetic to other’s with brain injury, I don’t think I am anywhere near being able to understand how people fare when dealing with a severe brain injury. What I have experienced is that an understanding and supportive community goes a long way in managing one’s disability.