Being confronted with a brain injury did stop me in my tracks. At first I did not think it had. I seriously thought I could ‘beat’ it. Loss of cognizance of my ability and condition was one unacknowledged loss due to ABI.
While I initially fought it and hoped to push on, it quickly became apparent that pushing on was not happening. In the first few days I was working from my daily rhythm and momentum. As each new day dawned I found it increasingly more difficult to get myself ready and organized and out of the house. Eventually I was arriving at work after lunch time, thinking I would get a bit of work done yet that day. If it was that difficult to get to work it doesn’t take much imagination to realize how the work panned out.
Trying to carry on after a brain injury is like pushing with a rope. No matter how hard you try or what techniques you think you can invent, it’s just not possible.
I went from a 2 hour daily commute with 50 hour work weeks requiring long term planning and daily execution of tasks without giving it a second thought to struggling to get through a single day. I went from living with a long term outlook to living hour by hour and even failing at that.
Gradually I realized the importance of setting some personal goals. My short term goal of cycling received a blow a few months after my ABI. My participation in a ten day Rocky Mountain bike tour scheduled for 6 months after my injury would have to go ahead without me.
It was about a year after my injury that I started to formulate some new goals, one being a long term.. I started to put into place my determination to do more cycling. I wanted to bike across Canada.
Needless to say, enough people tried to dissuade me from going ahead with the plan. From an outsider’s perspective I can understand the concern. The concerns were coming from family and friends who had seen me struggle to get through each day. They had seen me walk out of events within 30 minutes. They had seen me absent myself from musicals and large group gatherings. All with a concern that my symptoms would be exacerbated and worsen my ABI condition.
One thing I’ve come to realize. Activities might exacerbate my symptoms but my symptoms do not affect my condition. The symptoms are just a picture of how I’m living with my condition. You could say my symptoms are the ‘colour’ of my body that day. The colour doesn’t damage anything. My OT had assured me that even when my symptoms related to sensory overload went into the extreme zone and persisted there was absolutely no way it would worsening my ABI condition.
The one thing that would affect my ABI condition is a re-injury. Another blow to the head or violent shake up (which can happen even with a helmet on) will worsen my condition.
I had the frightful experience of a re-injury a few month back. The blow to my head put me back to some of the early symptoms that confirmed my ABI diagnosis. All the current symptom were severely heightened. My headaches returned. My tolerance for vestibular loading was so bad that I could not tolerate the washboard effect of a gravel road. My energy level would be zapped within a half hour of doing something cognitive.
For those who have been following my blog, let me say that the symptoms of my re-injury cleared up in about 3 weeks.
At this time I am 3 months from starting my fully supported cycling trip across this continent. Achieving this goal, in the way I have defined success will help determine my next long term goal. In the process of achieving my goal I hope to become aware what new things my changing limitations and abilities will allow me to do.
My recent designation, having reached the 2 year mark since my injury, is that I am not able to perform any reasonable alternate occupation. By itself that would be devastating and discouraging. It sounds like someone telling me that I’ve reached the end of the road of making helpful contributions in my community. That designation seen in the context of personal long term goals doesn’t have the same negative effect. Rather it affirms that the support systems that are in place will continue to be there to support me as I strive to complete new goals.
Having ABI means my brain will continue to function neuro-atypically. Despite that, my overarching goal is to see my overall functioning continue to improve. Finding ways and means to be of help and service for others is both motivating and encouraging.
I made a choice a few months back. I have been hesitant to move ahead with my decision because my fear of failure has been nagging me. I gradually realized that my fear is rooted in my perception of what defines success or failure.
In learning to live with noticeable limitations with my physical and cognitive stamina I have lost a level of confidence that previously allowed me to persevere and push ahead. My confidence is shaken because my limitations will suddenly stop me in my tracks. In the past my body would gradually signal that I am approaching my limit. If it was a physical limit, fatigue would gradually set in. If it was a cognitive limit, I would lose focus or begin to nod off. If I was dealing with something urgent I would find a way to push ahead and get a good night’s sleep a couple nights later.
Living with ABI has a direct bearing on my stamina. I now need to deal with the realization that I might suddenly be ambushed by some form of sensory overload, be it emotional, neurological or vestibular. I will not only be suddenly incapacitated, but could require a day or several to recuperate.
The decision I made a few months back was to cycle across Canada with Sea to Sea. The cycling tour is to celebrate Canada’s 150 years and to raise money for various poverty projects. Sea to Sea will partner with any local project that a cyclist would like to designate. This enables the funds to be used effectively for projects that are already happening and viable.
In order to move ahead with this commitment I need to redefine what success means. Pre-ABI I would have defined success as raising the $12,000 target (Canada or US tax receipts issued), riding each day and completing the whole 6700 km route.
Living with ABI means I need to redefine my idea of success. For me success is not necessarily completing each day or each leg of the route. Success would be better defined as completing each day within my physical and cognitive limits. That means recognizing any of my ‘early warning‘ signals and adjusting my activity in response. That could mean allowing SAG support to take me the balance of the distance on any particular day. That could mean choosing to not ride for a day if I need time to recuperate. Even if I need to deal with minor setbacks, staying with the tour would be part of my definition of success.
Another part of my definition of success it doing my part in raising awareness of the need to help people who are trapped in a cycle of poverty. The cycle of poverty can be a result of poor life choices, health issues, disabilities, lack of education or many time simply being born into a demographic that creates insurmountable obstacles to becoming a vibrant, contributing member of a community.
Why would I choose to bike? Why such a long goal? For one thing, I keenly enjoy cycling. Also, for me, an encouraging indicator with my recovery is that cycling helps minimize some of my sensory loading. Cycling has a way of reducing the effects of neural fatigue or clearing nausea and headache that develops from certain activities.
As the snow and ice clears I can begin to train outdoors. Hopefully the non-ABI related health challenges of this past winter is behind me. As the weather warms up I can step up my training. Last fall I had worked myself up to doing 40 km a day. My target by June is to be able to cycle 130 km a day. Just recently I did my first unicycle ride in about 2 years. I managed to cycle 18 km over a two day period averaging 10 km/hr. I figure doing a bit of cycling cross-training should provide some helpful benefits.
In early February I purchased a one way airfare to Vancouver. Imagine flying 5 hours and then taking over 5 weeks to cycle past my house before continuing another 3 weeks to Halifax. A friend has stepped forward and offered to pick me up in Halifax to then spend a week on PEI.
Each completed step in the planning is making this choice a more tangible reality. Each step in the planning is increasing my confidence in being able to be an active participant in Sea to Sea 2017. Every word of encouragement is a step towards realizing success. Most recently, tending the Sea to Sea booth at the Toronto International Bicycle Show has been an exciting way to share the project around thousands of cycling enthusiasts.