Being AWOL

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Snowbirds – Niagara-on-the-Lake

When guests are arriving or soon to arrive that’s when most households go into an “all hands on deck” mode. There never seems to be enough time, despite attempts at planning ahead, to get everything done.

That’s when I am the least helpful. I do most poorly when there are last minute jobs that need to get done. The lack of mental flexibility is one of my ABI challenges. That means dealing with a few simple requests quickly leads to neural fatigue.

Neural fatigue sets in because the brain is called on to change the trajectory it was on. Putting a halt to what I was doing and all the thought processes that are part of the activity takes neural energy. The so called wrapping my brain around the new activity is like having my brain activity level decelerate and accelerate, using up precious energy.

It’s not a question of the tasks being complicated. No. To do even a simple task puts the brain through several steps. First, the request needs to be acknowledged. If the request isn’t fully grasped then a question needs to be formulated to get clarification. Once the clarification is received it needs to be interpreted. If it is properly understood then a plan, even for very simple tasks, needs to be worked out. To execute the plan the ‘where’, ‘what’ and the ‘how’ of the request needs to be worked out.

All the steps that a brain goes through when changing gears and taking on a new task happens seamlessly with most people. Most people don’t even notice it till they find themselves in a situation where they say, “Oh, this multi-tasking makes me tired.”

With an ABI the brain lacks the strength or endurance to change gears easily or seamlessly.

Limbic System

Why does the brain experience neural fatigue after only a few simple requests?

The nature of my limitations lies in the fact that my limbic system has been injured and so the neo-cortex is working extra hard to fill in.

For me the limbic system, which should be adept at rapidly changing activities, isn’t able to perform it’s normal functions. To give a simplified explanation, the limbic system has the following key functions:

The structures of the limbic system are involved in motivation, emotion, learning, and memory.   https://en.wikipedia.org/wiki/Limbic_system

Following up on requests to complete small tasks might not appear difficult at first glance. However, a different picture emerges when one realizes that the small task requires the following functions; motivation, learning, and memory, functions which the limbic system is designed to handle very efficiently.

When these functions are handed over to the neo-cortex, the brain function loses significant efficiency. When the neo-cortex takes on these functions it requires much more effort and the processing speed is much slower.

Analogy

Compare the change in brain function to a weight lifter being called on to stand in for a sprinter. A champion weight lifter will be struggling. Just as each athlete has a specialty so too each part of the brain has a specialty.

Just as an athlete can cross train and develop additional specialties so too can the brain. However, it takes time, effort and practice to take on new functions. Also, there needs to be a propensity for the activity. The ability for the brain to relearn is referred to as neuroplasticity.

Social settings

Many things happen during social settings, that my brain can’t process efficiently.  The social setting could be a dance, a birthday celebration, a wedding anniversary etc.. After several conversations I will find a quiet place to give my brain a rest. When there is a change in the activity I need time to adjust. When there’s live music I need to walk away more often. Most often ten minutes is enough to make a difference. On returning I will do a cursory overview and decide if I’m ready to join in.

This does break the continuity of the event for me. Often that is a minor inconvenience. Other times there is a sense of having missed something. Trying to get up to speed can contribute to neural fatigue. In those situations it’s helpful when someone fills me in on what happened while I stepped out. Though I don’t count on someone to fill me in.

I don’t always realize the source of the disconnect that is nagging at me and therefore not realize the need to ask someone to fill me in while I stepped away.

In the past year I have met several people who are very observant. These people know and recognize when I’m reaching my limits often before I’m aware of it myself. That brings with it a strong emotional sense of Wow! To have others looking out for me is heartwarming and in some ways beyond words.

When I’m around people who understand my limitations I don’t feel like I’m going AWOL. I have the assurance that I’m unofficially on an approved leave.

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Post cycling reflections

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Portugal Cove, NL

This past summer I was on the road for 70 days. Starting on June 26 I was riding six days on, one day off. The 60 days of cycling gradually created a rhythm of it’s own.

The organized part

Initially the challenge of meeting the tour schedule, packing camp in the morning, getting breakfast, making lunch and gathering snacks for on the road was too challenging. It was the first time in over two years that I was on a rigorous schedule. Not only was I on a tight schedule but each step was critical for me to be prepared and equipped to ride for the day.

Eventually I more or less mastered daily hurdle of the rigorous morning routine. I was glad that getting accustomed to new routines was not impossible despite having difficulty with adjusting to new situations.

After the organized tour

Once I had completed the nine weeks with the organized tour I continued to cycle through one more province with two other cyclists. I wanted to include all ten provinces in my summer of 2017 ride. (I’ll have to do something about the missing three territories. But that’s for another day.)

Completing the supported tour and cycling with only two other riders made things much easier for me. I hadn’t realized how much my sensory loading was impacted each day simply by having 80 or so other people around me in camp and on the road.

The extra week of cycling Newfoundland had a negligible affect on my sensory loading. Riding with two other cyclists and having two support people meant there were fewer surprises and disruptions to my day. A more predictable day meant I needed minimal time to recover. This gave me more energy during the last part of each day.

The exception to experiencing reduced sensory loading was when we spent a day being shown around St. John’s. By mid afternoon I realized I needed to temper my activity level. By late afternoon I knew I needed to bow out. Pushing myself to a point were I would need a day or more to recover was not a good way to begin my trip back home.

Amazingly, my 16 hour ferry crossing of the Gulf of St. Lawrence went very well. That was despite having the ferry being battered by waves up to 10 meters high during most of the crossing. I experienced no noticeable sensory loading from that trip. In fact I slept quite soundly for most of the crossing.

Coming home

I had managed a summer long routine of being on a schedule and I had gradually fared better as the summer progressed. I was looking forward to a more relaxed schedule that comes with being at home.

With a more relaxed schedule of being at home I would be better able to manage my sensory loading. I didn’t need to push forward each morning to get cycling.

Unfortunately, a relaxed schedule after getting home didn’t happen. Very soon I was having to monitor myself more closely than I expected. I had hoped that my tolerance for sensory loading would improved over the summer.

Once I got home, I had left behind the simple life of cycling. I had left behind the simple life of doing one focused activity each day. All the routines that made up each day had one single purpose, support the bike riding.

Once I got home life became much more complex. I’m back home. That means there are bills to look after, there’s the yard work, there’s family to visit and more. Some things had been put off for the summer. Being home brought with it the full range of responsibilities.

One noticeable challenge I was once again reminded of is driving and riding in a car. A whole summer in which I probably covered less than 100 km in a car, while cycling over 7000 km. Once again I need to be mindful of the fatigue and nausea that come with riding in a car.

While my physical endurance has improved over the summer, I will continue to monitor the various activities that add significantly to my sensory loading. What I am grateful for is realizing that I can take somewhat of a holiday from having to manage my sensory loading. It’s not a holiday from work, but nevertheless, a necessary holiday that I need from time to time.

With the family gone to a music festival in town, I will head over there shortly on my own. I will cycle down there. I will like need to leave after about a half hour. I will enjoy the bit of time my brain can endure. I will value the memory of being there albeit only for a short time. When I’ve reached my limit I’ll cycle the 25 km back home.

Embracing Neurodiversity

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The Dunes Studio Gallery and Café – P.E.I.

Recently I had a situation which was causing me difficulty. The actions of another person was contributing significantly to my sensory loading. In addition to that, the person’s actions were inconsiderate and was out of sync with the expectations of the activity.

 

Because of my struggle with sensory loading related to my ABI (acquired brain injury), I had one of two options. The first option was to avoid being around the person. The second option was to make the person aware of the issue and appeal to some common courtesy.

I opted for the first choice. Just steer clear. It seemed the easier option.

I soon realized that it was impossible to avoid someone that was regularly around me. So my only viable option was to approach the person with my concern.

I approached the person with my request, not knowing what response to anticipate. That in itself added noticeably to my sensory loading.

The response I got was over the top and put me into sensory overload. Rather than acknowledging the friendly reminder, and recognizing that my request was very reasonable, I received some incredible push back. I was told that my request was ridiculous and that the courtesy was definitely unnecessary.

I walked away after the verbal assault and found a quiet place to off load some of the initial effects of my sensory loading. Since the ABI also affects my ability to problem solve, I was unable to give an immediate and measured response.

A half hour later the person approached me and apologized for, as he called it, his brusque behaviour. He told me he didn’t understand what I was talking about.  There was nothing ambiguous about my request. I had explained which of his actions were causing difficulty for me as well as reducing my margin of safety. His initial reaction was poorly covered by his nonsense explanation. With that I lost a lot of respect for the person.

Unfortunately, the interchange did very little to make his behaviour more considerate. For me it was a wasted effort and contributed unnecessarily to my sensory loading in the days that followed.

Avoiding to hide behind the ABI wall

I don’t like to use my ABI limitations to coerce someone else into changing their behaviour. If someone is engaged an activity in a socially acceptable way, even if it adds to my sensory loading, I won’t request any concessions. If someone is not acting in a socially acceptable manner I will ask the person to make concessions depending on how much it affects my ABI limitations.

However, I won’t explain my limitations as the basis for the request. I shouldn’t have to make my limitations public in order to receive cooperation. I don’t want to use my ABI as a means for coercion or manipulation. Being one’s own advocate is difficult and makes it hard to manage my sensory loading.

On a daily basis I have people around me engaged in activities in a socially acceptable manner. When these activities affect my ABI limitations I make it my business to leave the area or make my own accommodations.

Inclusiveness

My example shows some of the challenges of moving to a more inclusive neurodiverse society. The needs for those like myself who are neurologically a-typical the requests for consideration has a significant affect on our participation in a variety of events and activities.

At times when self-advocacy hasn’t worked I have had a measure of success with someone advocate for me. Unfortunately when self-advocacy hasn’t work other measures have too often been equally futile.

Much work needs to be done to move people to become more accepting of and have a greater understanding of neurodiversity. Through increased awareness hopefully more people will develop an appreciation for the needs of those who push the boundaries of neurodiversity. Pushing the boundaries not to make a point, but simply pushing the boundaries because of our presence and being who we are.

* What is neurodiversity?

A Heart for Helping

 

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Trans-Canada Highway near St. John’s, Newfoundland

How can I capture or summarize the impact of ten weeks of continuous cycling. Each day, though it followed a similar pattern of “eat, sleep and bike, was filled with many impressions, unexpected events, chance encounters, spectacular views, heart breaking situations, terrorizing situations, sheer bliss, uplifting conversations, ABI challenges, and so much more.  The abundance of experiences will percolate in my thoughts for a long time.

One of the main threads is an increased appreciation for those living in poverty and an increased conviction that there are many roads out of poverty. The summer has been a learning experience as different solutions have become evident.

Learning by observing

 

Just like cycling across the widest country in North America takes commitment and a willingness to address challenges, so to does gaining a deeper understanding of poverty. Taking part in the Sea to Sea charity ride gradually expanded my awareness about and demonstrated ways to help to end the cycle of poverty. The ride has exposed me to big projects and simple acts of hope.

Cycling six days a week took me through variety of neighbourhoods, ranging from grotesque affluence to abject poverty. I probably didn’t see the worst situations because I cycled through communities that had roads. It makes one wonder how much worse it is in some northern communities where there is no road access and the community infrastructure leaves much to be desired.

This ride has heightened my own awareness of the many faces of poverty. I know I have only seen a glimpse of the visible side of poverty. The hidden faces of poverty can elude us unless someone points it out.

I need time to consider how my deeper awareness will change what I do. Change sometime begins in small ways.  Let me share one small example.

I do want to clarify that my acts of kindness are not the kinds of things I normally talk about. It’s not for me to announce or brag about what I do for someone else.

But when you give to the needy, do not let your left hand know what your right hand is doing,”  Matthew 6:3 NIV

As I reflect on my first day back home I realized that even in small ways I am recognizing the needs of others and feeling compelled to act.

I was in a grocery store yesterday. A capable looking senior was ahead of me at the checkout. He was struggling to fit all his groceries in a knapsack. He managed to put the remaining groceries in a second bag he had. I asked if he was biking home. His response was, “No, I’m walking.” When I heard where he lived I offered to take him to his house. He jumped at the offer, saying it would definitely save his legs.

On the ride over to his apartment building Ron, as he had introduced himself, commented about Cobourg being a ‘Nobourg’ kind of place. He had struggled all his life with jobs eventually ending up in Cobourg. Despite having some very marketable skills, each time a company restructured he was the low man on the totem pole and had to go look for employment elsewhere. His life long struggle was evident in the way he presented himself. His appreciation for the lift was heartfelt.

Learning by listening

At various times while cycling across the continent we listened to presentations about projects that had been initiated by local citizens wanting to address specific needs. Many of these projects were run by a small group of volunteers with minimal resources, yet determined to reach out and help. These were projects motivated by people who had a heart for others and were willing to give, give, give.

One community ran a coffee house in which they offered breakfast ‘free or by donation’ a couple times a week. Their facility was small but that didn’t stop them from running a second hand store as well.

Another community re-purposed a church transforming it from a single use place of worship to a multi-use, multi-denominational place of living out one’s Christianity. They lived their faith with the sense that work and worship should be one. It was a place that provided support for people in various ways. They provided shelter, ran a cafe and sold merchandise which had been made locally.

Each time we listened to a presentation we were shown another initiative that would bring a shimmer of hope back into the lives of the poor.

We also heard about projects being done by Partners Worldwide, one of the tour sponsors. Partners Worldwide does work in several developing countries. It’s the business model that they have adopted that I find most intriguing – they are intentional about ending the cycle of poverty. Or shall I say they are intentional about ending of dependency, getting people beyond relying on the kindness or generosity of others to hopefully meet their basic needs.

Partners Worldwide works with people by using the resources on hand to help a person or family become financially independent. They will mentor farmers so they can grow crops that are more productive and help them with getting quality produce to market. In some locations they will assist with fees to verify that the farmer has legal title to the land.

Partners Worldwide will also provide micro-loans so farmers have start up money. With the comprehensive support that is being offered, farmers are often able to repay the loan ahead of schedule.

The most encouraging part of this type of help, is that the farmers who succeed become mentors to others in the community. Living with regained dignity and new found hope, out of thankfulness they want to help others. You could say, helping people out of poverty becomes contagious.

Learning through conversation

When cycling through towns and villages it was very easy to get into conversations with people as people are going about their daily activities. The slow speed of a bike and the fact that bikes don’t have a barrier called a windshield, put me in direct contact with people.  Sometimes it was just a quick greeting and a couple of words. Other times it was a longer conversation in which a person shared their struggles or disappointments.

I got a sense that when a person shares their story there is an underlying sense of  hope. They might be describing their struggles but in sharing they told their story, a story of perseverance, a story of hope.

These were stories of celebration. These stories weren’t about a life of abundance, but rather one of simplicity, one of thankfulness because their basic needs are met. They were out and about. They were participating in their community.

The poor, those who have lost hope are not interested in sharing their story.  My sense is that once someone reaches out and partners with them they will begin to regain their self worth. As they start to feel the stirrings of hope they will begin to share their story.

A Cobourg initiative

for many people, poverty is only one mishap away. It might be a car breaking down and no longer being able to get to work. Repairing the car might mean there is not enough money for rent at the end of the month.

Last spring, a report was shared at a meeting in Cobourg. According to a survey conducted in the spring of 2017 there are over 1000 people in Northumberland County that are homeless. Some of those people are on the street. Some of those people are ‘couch surfing’. Some of those people are hidden from view in other ways.

Cobourg has a unique way of helping people with one of their essential needs. A group of volunteer have set up a ‘do it yourself’ shop to help community members with some basic transportation needs. Cycle Transitions helps community members acquire an affordable bike and teach them how to maintain it. The shop has volunteers who offer their experience with bicycle repair and take the time to teach cyclists to do their own repairs. Those who can’t afford a bike can earn one by volunteering at the shop and build up ‘sweat equity’ towards owning a bike.

I love this model of working with people who have minimal resources. It is empowering. Each person who works through Cycle Transitions not only gets a bike for basic transportation, but learns how to maintain a bike. They’ve earned the bike and have a vested interest and the knowledge to keep it in safe working order.

What’s next

I hope to explore ways in which I can make a difference for people who live in poverty. I started the ride with a general sense of it is good to help the poor. I completed the ride with a strong conviction that there are effective ways to help people. The dozen or so success stories I heard this summer means there are a thousand more untold success stories out there.

I will continue to promote awareness of ways in which we can work to end the cycle of poverty, one person or one family at a time.

The oldest rider who cycled with us the whole way was 81 years old. He has many years on me. Don’t be surprised when I find another opportunity to take on another cycling adventure that helps raise money and awareness about poverty. There will always be people who need and would welcome a hand up, a mentor or someone to partner with them.

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’
40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
Matthew 25: 35-40 NIV

Journey Across My Canada

Start of this journey

I find it fitting that my goal of cycling across Canada which took just under four years to complete ended during the Canada 150 commemorations. In those four years I have experienced significant personal changes.

I started my ride across Canada on September 28 in 2013 in Victoria. Victoria is the starting point or end point of the Trans-Canada highway. That was a one day ride that I did with one of my colleagues.

On June 26 in 2017 I continued that journey with Sea to Sea. That part of my ride went on for 64 more days. This part included about 80 other cyclists who rode parts of the journey and about 50 other riders who rode all the way to Halifax.

On August 30, the day after arriving in Halifax, Nova Scotia I continued the journey for 5 more days. This part of the ride included 2 other cyclists who rode along to St.John’s, Newfoundland ending at Cape Spear, the most eastern point in Canada, on September 3, 2017.

Inclusivity

Finishing in Newfoundland was a fitting way to end the cross Canada journey through all ten provinces during the Canada 150 year. Even though Newfoundland came late, joining Confederation in 1949, this makes the cross Canada ride complete.

This is not meant to overlook the 3 territories, Yukon, North West and Nunavut. Cycling through them would be a whole new level of cycling. There isn’t a continuous road connecting the three territories.

Crossing Canada at some point from the southern border to the Arctic Ocean is possible now that the Yukon Territory has completed a highway to the north coast.

Tasting a thin slice

Having crossed Canada from West to east only represents a thin slice of an amazing country with such diversity in terrain and more significant a diversity in people.

As a country with two official languages, that simply doesn’t do justice to the multitude of languages spoken in Canada.

There are quite a number of different languages spoken by the various First Nations communities in Canada who have lived on this land from time immemorial (as one Nation in Nova Scotia identifies themselves). Only one province in Canada, namely New Brunswick has a beginning sense of inclusiveness by being officially bi-lingual. In my understanding, of the territories, Nunavut is the only territory that operates with two official languages.

My language experience in Newfoundland is even more unique in that they speak English but have unusual variations of it. The variation includes expressions that most people from away would simply not understand. Also, depending on which part of Newfoundland one is from words are spoken differently, adding letters or omitting letters when it is spoken.

Identity is key

Language gives a community a unifying identity. Language is a key factor in capturing a culture and a people.

My sense has always been that when people are comfortable with their identity they have a greater acceptance and appreciation of other groups, cultures and diversity of view points. Those are important qualities for people to be able to live at peace with each other.

Canada is a confederation. A confederation only works when people choose to work together and value what others have to offer.

Even though my journey across Canada has been a very thin slice it has raised my appreciation for this country I call home and want to see the diversity within unity thrive by learning from each other.

Stories breathe life

The most effective way we learn from each other is by listening to each other’s stories.

In my journey across Canada I heard an interesting comment about sharing stories.

Within one of the cultures in Canada, they do not want a story electronically recorded. The reason being that a story is something alive. You lose it when you try to capture it.

It is only in the telling that a story stays alive. Each time a story is shared the ambiance where it is shared, the mood of the group in receiving the story, the intent of the story teller in sharing it and many other factors is different each time a story is shared. With each telling the story comes alive.

I want to live in a country where each community, each ethnic group or nation is proud to keep their stories alive. They might be stories of celebrations or of pain. In sharing a story one is sharing a sense of hope for themselves, their community or their country. Sharing stories is what I believe would make the Canada 150 celebrations successful.

What stories will you share about the community you identify with?