From Les Mis to Come From Away

Visiting St. John’s NF – having come from away

Just over four years ago I attended a local performance of Les Mis. That was a few weeks following my injury which was eventually labelled as an ABI. (acquired brain injury). At the time I was struggling to hold onto my job trying to at least work half days and gradually failing at that.

I had no idea what effects a musical performance would have on my ABI condition. About 15 minutes into the Les Mis performance I was dealing with sensory overload but having no previous experience with it, had no idea what was happening. I was in highly unfamiliar territory.

I was seated a half dozen seats from the aisle. Since I couldn’t leave inconspicuously I decided it was best to wait till intermission. I did what I could to hold out till intermission. By then I had great difficulty with my balance. I couldn’t talk or even formulate my thoughts. I was in tears. In short my brain was so scrambled I could only manage a bit more than the basics, just keep breathing. (That night it took a long time to figure out how to breathe and sleep at the same time. When I fell asleep my breathing would stop. When I drew a breath it would wake me up.)

I had just come through my first and probably my worst of many experiences of sensory overload. I found out later that severe sensory overload can trigger some serious medical issues.

Four Years Later

I recently attended a showing of Come From Away, a moving story of 7000 people landing unexpectedly in Gander Newfoundland as a result of the 911 events happening in the United States. This time I attended a performance knowing what factors would put me into sensory overload.

Learning to speak Newfoundlander

The production on the day I attended the performance was billed for people with sensory issues. In general terms this would take in people who are neurologically atypical. This  could include people on the autism spectrum as well as people with acquired brain injury.

There were several accommodations that the theatre staff had made for attendees. If a person was dealing with sensory overload there were lounges available to provide a quiet place. An usher would remain available in the lounge. The lounge was equipped with a large screen so one could still watch the performance.

A special area was set aside so a person could be readmitted to the theatre without disturbing people near their original seat.

Some things were not described but I made some assumptions. I imagined the lighting would be toned down or the sound would be somewhat muted. I was wrong.

Before leaving home

The day we were scheduled to attend the performance I was not at the top of my game.  I spent an hour in the garden first thing in the morning but that didn’t seem to help much. I was feeling stressed, partly because of the number of things that had to be coordinated in course of the day in order to attend the performance.

We had decided to take a commuter train into the city to simplify the trip. We could avoid dealing with parking or the demands of driving in heavy city traffic. We did the 40 minute drive to the commuter train. The train took us to within a 10 minute walk of the theatre. It was a warm sunny spring day so that was also in our favour.

The Elgin Winter Garden Theatre

Elgin Theatre auditorium and box seats

We arrived at the Elgin Theatre an hour before curtain time. This was part of the plan so as not to be rushed with any part of attending the event. We entered the theatre, had our tickets scanned and waited in the lobby near the snack bar.

From where I waited I could see people as they entered the theatre. I found it interesting to watch people entering the building. As they came in I couldn’t help wondering which people were there because they had sensory issues like myself. In many cases one could not tell whether the person was a caregiver or whether they had sensory issues. Or maybe some groups had no one with sensory challenges.

With many attendees there were indicators that the person was neurologically atypical. For some it’s the expression on their face. For others their gait as they walked gave some indication. With some there were indications in the way they were holding hands with an accompanying adult or two. For the most part these and other indicators tended to be subtle and rather inconspicuous.

With other attendees it was quite obvious that they were dealing with neurological issues. Seeing someone arrive with a caregiver pushing a wheel chair while making encouraging comments to the person being brought in. Another person was brought in by wheelchair having difficulty keeping their arms and legs calm. Others had difficulty walking. With some there was involuntary vocalizations.

Emotional sensory loading

Before the performance even began my sensory loading was ramping faster than I had hoped. Seeing the challenges that others are dealing with is hard to ignore. That combined with observing the dedication of the caregivers in making the effort to address their quality of life needs is emotionally overwhelming at times.

Had I attempted this a year ago the emotional loading would have put me into sensory overload and I would have had to remove myself from the theatre even before the performance began.

Once I was seated I realized the overt challenges that quite a number of attendees were dealing with would remain quite noticeable. The young man two seats in front of me would wave his hands over his head regularly. His two caregivers took turns helping him control his movements and reduce the distractions for the people seated near them. Another person a few rows ahead was noticeable moving up and down through the whole performance. There were a half dozen attendees within my line of sight that provided some level of distraction.

Additional Instructions

The theatre had made arrangements to have a prompter on the stage for the benefit of the audience. Just before the performance began he explained two signals that he would give at various times. If he put on his head phones that was a signal that the volume would increase noticeably. If he put his hands over his eyes that was a signal that there would be some lighting effects happening shortly.

It was at this point that I had an inkling that the performance was not modified to give a reduced sensory impact. Rather, the theatre staff was there to assist anyone who needed to remove themselves from the auditorium. Shortly after the introduction the performance was in full volume. The opening song coming through loud and clear.


I had come to the performance not realizing this was a musical. I thought it was a play. Not three minutes into the performance I was overwhelmed. I was in the red zone. I was in tears. My ears were ringing, and I was putting all my energy into focusing on calming my self down and reducing my anxiety. After about five minutes the intensity of the sensory experience became a bit easier to manage.

At times my sensory loading would increase to a point that I thought it best to leave the auditorium. I was only three seats from the aisle so that was not to big a hurdle. Also, the people next to me would not have been surprised if I needed to exit given the type of audience in attendance.

Through a concerted effort during the whole 100 minutes (without intermission) of the performance I was able to take in the whole story.

Having a snack before the performance and again during the performance was helpful. I needed all the energy available to focus on avoiding sensory overload. It was physically a very taxing experience.

The sensory loading was coming from two aspects of the performance. The volume of the singing and musical accompaniment and the emotional impact of the story line. I hadn’t realized before coming that this was a musical. Live music continues to be one of my toughest sensory challenges.

The story had a strong emotional impact on me because it was based on the lives of real people. People having experienced loss. People having experienced separation from family during a series of stressful events, unable to reach them even by phone. People experienced hospitality with wide open arms from people with big hearts.

Through the whole performance I was struggling between the emotional sensory loading and the auditory sensory loading. It was an ongoing struggle with no let up. By the end of the performance I could not participate in the standing ovation.

I did not even try to get up till the auditorium was empty. I then got up and managed to slowly make my way to the lobby. I wended my way through the crowded lobby looking for a quiet place.

Elgin Theatre art show – Signal Hill

I headed down the stairs to the art display . No one else was there. Time to look at the paintings of Newfoundland. After about twenty minutes I was ready to walk back to the train station. The longer I walked the better my momentum became.

By the time I boarded to commuter train I was dealing with a low grade headache. The other symptoms from attending the performance had mostly cleared up. By late evening my headache had cleared.

Next morning I was stiff. Every muscle in my body felt like it had gone through an intensive workout. Chest muscles, arms, legs, fingers, back. The challenge of dealing with sensory loading for the 100 minutes was like an intensive physical work out.

In conclusion

Attending what was billed as a performance for people with sensory challenges was helpful in some ways while at the same time adding to my challenges.

Seeing the challenges others have with their sensory and related issues contributed significantly to the emotional sensory loading. However, attending a musical and dealing with an emotional story line, I would have had similar sensory challenges at a regular performance.

What I appreciated most about attending the performance is that it put me at ease about my own sensory loading. I felt I was in a socially safe environment. That reduced my level of stress helping to reduce some of my sensory loading. Not feeling at risk of embarrassing myself was a value added feature.

A day after the performance I was wondering why I didn’t make use of one of the accommodations that Elgin Theatre staff had made. I had been so focused on making it through the performance that I didn’t even entertain the ‘problem solving’ of considering the benefits of walking out. Had I walked out I would have been able to see the performance on the lounge screen. Next time I might walk out and try the lounge with the TV screen. However, I didn’t come to watch the performance on a digital screen so that wasn’t my ‘go to’ solution. However, listening to the digital version of the music would have significantly reduced my sensory loading.

Listening to the story line was a vicarious emotional experience. As such most of my emotional sensory loading cleared in an hour or two. That is in sharp contrast to recovering from personal emotionally challenging situations in which it often takes me several days to have the sensory loading clear enough to taking on my daily tasks.

Preparations to consider

The event caught me off guard on some elements. Though I was prepared for others due to previous experiences. That made me consider what I could have done to further help mitigate the negative effects on me.

My preparedness kit now contains the following items.

  • Snacks: to help maintain my level of energy
  • Headphones: to mitigate the effects of unexpected noisy environments
  • Note pad: to communicate when my sensory loading makes talking difficult or impossible.
  • Travel Pillow: assist with immediate short term recovery

Over time I will likely add additional items to my kit.


Sensory Loading Strategies When you can’t Influence the Setting

Pastor Don: His poor eyesight does not take away from his clear vision

I have recently emerged from several weeks of low energy. I say emerge because it has been like emerging from a tunnel, into a narrow canyon and then on to… a gradual awareness of a bigger and vibrant world.

With my increased level of energy I can count on a greater number of activities to go well without putting me into sensory overload or what I also refer to as entering the ‘red’ zone.

When I woke up I was reasonably assured that the day would flow well.

This being Sunday morning I was looking forward to a time of worship. I had done the needed tasks before heading into town. I had opened up the chicken coop, filled the feeder and collected a few eggs. Before going in for breakfast I cleared the 15 cm of snow that had fallen on the driveway and walkway overnight. (One day too early to call it an April Fool’s snowfall)

The worship service began with the usual announcements and introductions followed by an opening song. Following the official greeting congregants are invited to greet each other (with a holy kiss?). People left their chairs and extend greetings to each other into what quickly became a chaos of chatter and people mingling. A clear contrast to the meditative tone just moments earlier.

Today I managed the greeting chaos surprisingly well given that I usually exit the sanctuary just before this part of the liturgy. I do best to avoid the randomness, the ‘messiness ‘ of the moment, the quick greeting of a half dozen or more people. Having half a dozen social encounters compressed into a 30 to 60 second block of time usually triggers neurologically fatigue. That invariably results in a significant drain on my energy level.

Today, after the chaotic greetings two people entered and eventually managed to be suitably seated in front of me. The handicapped person was being helped by a PSW (personal support worker). I couldn’t help but notice the challenge of getting the person seated aided by the gentle patience and care shown by the PSW.

During the next hymn I found myself experiencing sensory overload. The emotion centre of my brain could not handle the combination of three sensory events in close succession. The loss evident with the handicapped person and the heartfelt care being given by the PSW. The chaotic greetings with its social demands. The music and the lyrics of the song chosen to fit the the lenten season.

By themselves anyone of these elements might have been manageable. When the different sensory events occur in rapid succession the compounding effect put me into sensory overload.

While my recovery from these activities could be relatively quick, having the events happen back to back left me no opportunity for even a brief respite before the next sensory event.

When this happens I am in the habit of leaving the area and going for a short walk. I am usually able to join in again within 5 to 10 minutes.

Can it be different?

I heard recently of a grocery store that offers customers a low sensory shopping experience. The low sensory hour of grocery shopping includes adjustments such as low lighting, no PA announcements, no music and no shopping cart returns.

Could one make worship a low sensory experience? Where would one begin?

One would not want to exclude handicapped people. Being able bodied should not be a prerequisite for being a part of the community. While seeing the loss of potential opportunity in a disabled person is emotionally taxing, seeing the heartfelt care being shown is also emotionally taxing, albeit a positive emotional experience… nevertheless adding significantly to my sensory loading.

While live music and the accompanying lyrics can contribute to emotional loading its untenable to have that eliminated from the liturgy. I find the lenten lyrics along with the music in minor key a combination that hits a bit harder. However, imagine a worship service with the lyrics redacted and no music or singing. That would take the soul out of worship.

Situations and actions which touch the heart has a way of overloading my emotional center.

It is clear that the sensory experiences are an integral part of a worship liturgy. My ongoing challenge is to develop strategies for navigating that hour and a half each Sunday morning.


  1. Arrive refreshed. If possible void sensory loading activities the day before.
  2. Be mindful of which parts of the liturgy present challenges.
  3. Participate in the difficult parts of the liturgy briefly. Over time increase the length of participation. Total avoidance can increase the risk of developing ‘super sensitivity’.
  4. Choose seating that lessens the sensory impact. Choose seating that allows for an inconspicuous exit.
  5. Find space to move around as restlessness is an early signal that I’m approaching sensory overload.

Changes would be unreasonable

At one time I thought it was reasonable for me to request a change. If the worship community would agree to remove the chaotic activity of people doing the 30 to 60 seconds of greeting that would eliminate one problem area for me. Well, one morning a guest minister missed that part of the liturgy. I was relieved while many people were annoyed.

The worship liturgy follows its own course. It’s not reasonable for me to request changes in the liturgy to meet my needs.

Over time I hope my strategies will minimize my sensory loading. I need to accept my own accommodations to properly manage my sensory loading. That will likely mean choosing to limit my participation at times.

How about you?

I would love to hear what strategies others use to manage their sensory loading whether it’s at a structured event or in a casual setting.

Plan for Disaster…

20180124_175700I’ve endured five flights with smooth take offs and well executed landings while in ABI (acquired brain injury) mode. On flight number six I crashed. Don’t know what hit me. Take off didn’t go well and landing was a disaster.

I took my first  plane flight in ABI mode to the Caribbean a year ago. It was a test flight to see how I would fare. This was on recommendation of my OT (occupational therapist) who many times during my rehab would ask me, “Have you done …. since your accident?” If the answer was a no then we would outline the possible and probable challenges. With that information and likely projection we would work out a plan that would hopefully ensure a high degree of success.

I recently arrived back from a holiday in the Caribbean. The flight down (number 5 in ABI mode) was routine like the four before it. It had me wondering more than once why some much planning had gone into flight number 1.

Reflections of my most recent flight

Time and again I have been reminded to plan for the worst case scenario. Plan for the worst but hope for the best. When scheduling events and activities, my default mode should be to plan only the number of activities I can manage if all of them ended up in ‘worst case mode’.

As I reflect back on the most recent plane flight, planning for the worst has taken on a new dimension. The bus trip between the airport and the resort had taken longer than the previous time. Not much to do about that. With the recent rains many of the washouts had only been partly repaired making the trip much slower, longer and rougher than expected.

The initial arrival at the airport seemed to go fine. Once we had shed our checked luggage we prepared to go through customs. With the lineup being exceedingly slow, the stairway steep and the area hot and stuffy, I decided instead to go outside, get some fresh air and enjoy the quiet surroundings. (With only two international flights a week, the area outside the airport is a very calm place.)

After about 45 minutes I figured my traveling partner was near the front of the line, ready for customs inspections. I made my way back into the airport and excused myself as I pushed passed the waiting passengers. It was hard to do that unobtrusively as the waiting passengers tend to fill up the whole width of the stairway. Fortunately no one seemed visibly annoyed at having me weave past them. The visa procedure went off without a hitch. The customs inspection not so.

I was asked to remove my water bottle from my carry on luggage. I politely informed the inspector that I didn’t have a bottle. The second time I was ordered to open my luggage. Oops, there was the water bottle. Long forgotten. Fortunately there were no repercussions to my polite challenge.

After completing the customs inspection I was now confined to the hot, crowded and noisy waiting room on the second floor of the airport. The air conditioner was better at adding to the noise than at cooling the air. Waiting for 45 minutes in this space was too much for me. I was overwhelmed and went into sensory overload.

During the four hour plane flight I was alert and somewhat on edge. Unlike the previous five flights, I did not sleep one wink. By the time we landed I was overwhelmed and incapacitated due to a much more severe bout of sensory overload. I stayed in my seat for the next 20 minutes trying to pull myself together. Eventually, with the plane almost empty I felt compelled to exit. I didn’t want to have to deal with the extra attention that would accompany being helped off the plane.

The walk to the exit of the plane was slow and laboured, seeming to take forever. However, getting off the plane was minor compared to making my way to customs and the luggage retrieval area. My progress was slow and laboured as I shuffled along as best as I could manage.

I looked around for a courtesy shuttle but there were none in sight. The passengers who were being given wheel chair assistance seemed much more in need than me. And so, I continued to shuffle my way down the long corridors, thankful for a couple escalators and one moving sidewalk. While an escalator can be helpful, when I’m dealing with too much sensory loading, they can be tricky to get on and off since my balance and coordination are seriously compromised.

Reviewing my most recent flight

In working with an OT for the past 24 months, she has trained me to become my own detective. In looking back on the trip I have not been able to determine what factors caused my most recent flight to be so difficult. Also, I didn’t have the option to change my course of action during the 12 hours it took from leaving the resort by bus and arriving at home.

However, what I can change is to plan for a worst case scenario for my next flight. Having had five successful flights I figured I had seen the worst case, which was far from disastrous, while flying and have found it to be  very manageable. So, no additional thought or planning had been considered in my most recent flight.

The most recent trip made me realize that I need to find as many ways as possible to reduce my sensory loading. The less familiar the surroundings and procedures the harder it is to make contingency plans. At the same time, the less familiar the surrounds and the procedures, the greater the risk of experiencing sensory overload.

New travel plans to consider

To reduce my risk of sensory overload I will make plans that look like I’m being pampered with first class service. I need to request preferential treatment whenever possible. In going through the departure procedures, making arrangements for VIP privileges should help. (Maybe that’s why politicians look great after a long flight.) This could include a separate lounge, ostensibly with better air conditioning and hopefully much quieter.

I don’t plan to request preferential seating in the plane because I don’t know whether that would make any difference. Though requesting a window seat is less disruptive. That avoids having to deal with other passengers who might want to get in and out of their seat during the flight.

I would arrange for a courtesy shuttle if I’m in a large airport. That would limit the amount of walking as well as the distance I need to carry my luggage.


I’m not sure how convinced I am about requesting preferential treatment. I would feel odd getting special consideration if I don’t need it. Besides with the odds being that low, one in six, why make a fuss.

My daughter told me that such thinking is nonsense. Her advice is to plan for the VIP treatment and then just enjoy them, whether they are essential on that trip or not. Besides no one knows why I’m getting VIP treatment. For all they know, I’ve paid for it because I’m one of those hoity toity travelers that feels entitled to receiving first class treatment all the way

Really. Why should I care what others think. I just need to tell myself, “Don’t sweat the small stuff.” The goal is to arrive at my destination in fine form.

The Paradox of Being Alone

Wilderness cabin

So often I prefer to be alone but I don’t want to feel left out. This conundrum is one of the challenges of living with ABI (Acquire Brain Injury), though probably not limited to those who live with ABI.

Living with ABI can become a very isolating way to live. By that I mean, saying no, or passing on opportunities to participate in activities with others when I realize my sensory loading is reaching a point where I add to it at my peril.

The Paradox is real

When I engage in prolonged physical activities, such as cycling for a three to five hour block I  know I am committing to a recovery routine that I should not ignore. That means that as much I want to join in I will have to forego activities immediately following my vigorous activity.

When I am engaged in a discussion with a half dozen people I know my internal timer is counting down. As I am busy listening, reading body language, assessing people’s tone of voice, formulating responses to what I’m hearing, finding a socially appropriate way to interject, my neural fatigue is rapidly building. Even if I find the discussion very engaging at a certain point the internal timer runs out. I want to stay with the discussion but at the same time I want a quiet place to regroup.

When I’m at a music concert it’s does my heart good to take in the music, the lyrics and the energy of the venue. The music can be totally captivating, bringing back wonderful memories or creating a memorable experience. At the same time I know that at some point, maybe 30 or 45 minutes, and sometimes much sooner I will reach a tipping point. The captivating music will suddenly become a memorable failure, a start of a slow recovery in which I crave solitude while missing the company of family and friends.

When I volunteer at the nature center close to home I need to remain self aware. The last time I was there I had only worked for about three hours but was totally exhausted. Being introduced to the project on my arrival was neurologically challenging because of my lack of mental flexibility. Sizing up the project for the day, coordinating with two other people, and doing something unfamiliar all contributed significantly to my sensory loading. While I enjoyed doing the project and wanted to see it completed, after three hours I was longing to get out of there and find a quiet place.

Planning Ahead

This week I have the opportunity to address a room full of teachers. I have offered to  share my own experiences of living with ABI, living as a neurologically atypical person in order to advocate for neurologically diverse students hoping that more teachers will develop a sensitivity for their needs.

The paradox of wanting my own space yet feeling compelled to share is staring me in the face. I am not sure how to prepare, to avoid sensory overload while doing an hour and a half presentation in a room full of people.

I know I need to ensure that my sensory loading is at a low level at the start of the presentation. That means I need to watch what types of activities I choose to do in the two days leading up to the presentation. Taking in an extra bike ride or two would be helpful. Engaging in socially or cognitively demanding activities of any kind needs to be kept to a minimum.

I know I need to ensure that my sensory loading is at a low level. I hope that booking a motel and arriving a day ahead of time will give me time to shed the sensory loading of driving in a car. Or maybe I should take the extra day to cycle the 160 km to the event.


In order to manage my sensory loading while addressing a room full of teachers I need to be mindful of the structure of the presentation. While I would normally consider it conducive to allow for questions during the presentation, I am aware of the extra demands that will place on me. With my problem solving skills being severely compromised, fielding questions would be counter productive.

In order to manage my sensory loading it’s important to manage my level of stress and anxiety. Most people experience a measure of anxiety when addressing a room full of professionals, or non-professionals for that matter. I have conscripted a co-presenter who is scheduled to do part of the presentation. In addition to giving me a break when she presents she will be available to back fill what I am not able to complete.


The paradox of being alone colours much of what I do. At the same time I make a point of pushing forward, setting goals so that I don’t end up feeling that I’m living in isolation.

To resolve the paradox of being alone, my aim is to avoid isolation, by seeking solitude. Finding activities and finding places that refresh my being, that helps me manage my neural fatigue, that is my idea of a place of solitude.

When I am able to experience a measure of solitude on a regular basis, that gives me the energy and endurance to reach out, to share and not slip into a place of isolation. It’s not an easy balance to achieve. It requires increased self awareness, an understanding of my limitations and setting worthy goals for how I want to participate in my community.

Post cycling reflections

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 likely 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.

Escape Plan

Ready to roll – new drive train, accessories attached

In my recent session with my OT we spent over an hour developing an escape plan. While I have looked at many aspects in preparing for a successful Sea to Sea trek across Canada, I had not thought about developing an escape plan. Why? Well I was thinking in terms of success, not planning for failure.

I know from experience, that with my ABI, effective problem solving is a real challenge. Effective problem solving when I most need it, when I am in a situation in which I am dealing with severe sensory overload, will most certainly fail me. In failing me, it will likely create embarrassment for me, put extra demands on other people, result in poor decisions, in short it will likely make matters worse.

Get me out of here

The challenge of starting the trip so far away from home is that I can’t just quit after a difficult week or two and get a quick ride home. So, I have worked through a plan of how to exit the Sea to Sea tour ‘gracefully’ should it be necessary. I have settled on the likely exit points: Calgary, Regina, Winnipeg, Michigan, Owen Sound, Ottawa, Charlottetown. Each possible exit point comes with certain supports to minimize the potential challenges.

After developing the various exit points it gave me a sense of assurance. It took away the fear or anxiety of possibly creating a crisis should I find it too difficult to continue. With my fears reduced that is one less factor to weigh me down and in turn give me more energy to channel in a positive way – turning my pedals to keep me moving.

How do I know how I’m doing

In order to not end up exiting prematurely or at all, I need to know how I’m doing. Failing to properly gauge myself will result in being blindsided. With six days cycling and one day rest for each of the 10 weeks I need to be mindful of maintaining my reserves.

What to look for:

  • if I experience vertigo at the end of a ride or at rest stop I know I need to reduce my pace.
  • if I experience fatigue on waking, ride at a reduced pace that whole day. The thrill of biking once I get moving can falsely mask the fatigue and in turn show up in the form of greater fatigue the next morning.
  • if I am not sleeping well I need to reduce my pace. With too much physical demands it becomes harder to relax and sleep properly.
  • if I experience an increase in emotional loading, it will signal that I’m am not able to recover from the physical demands of the day or I need to curb some of the additional activities that could be causing the sensory overload.

Strategies for avoiding ‘trouble’

Even though I have done a four day ‘warm up’ bike trip, I need to be prepared for the unexpected. While I am aware of some of the activities that contribute to my sensory loading, there will be new activities which I need to be mindful of. For that reason I need to re-evaluate on a daily basis.

There are some simple strategies that I have agreed on that will hopefully stand me in good stead. I will schedule a nap as soon as I get into camp each day. From experience I know that after a physically strenuous day, I will likely be restless the first part of the night before sleeping better the second half. So it would make sense that a pre-sleep session should help make the whole night restful.

Riding in a large group can create a greater sense of camaraderie, but experience tells me that it will add significantly to my sensory loading putting me at risk of sensory overload. So, riding with no more than four cyclists would be advisable.

I’m going to have to see about the weekend celebrations as the tour is scheduled to hit a major centre each weekend to connect with supporters and donors. Participating in that might be a non-starter.

Despite the many contingencies that I have looked at, I find that cycling helps to dissipate much of the sensory loading that builds up as the day progresses. It seems like the physical, rhythmic action of cycling, along with the slower and simpler way of seeing the countryside provides relief and healing.

After analyzing all the different things that could go wrong, I actually found it to be a positive and a reassuring activity.

I have found some quotes about failure that are appropriate to different aspect of my upcoming bike trek:

“Failure isn’t fatal, but failure to change might be” – John Wooden

“Failing to plan is planning to fail.” – Winston Churchill


Intriguing Four Days

Minimum Bicycle Safety Margin

It’s been an intriguing four days. Rather than driving the four hour trip to visit my daughter I decided to cycle to her house. A four hour drive has it’s challenges but so does a 4 day cycling trip.

Challenge #1

My main challenge when I am driving is managing the sensory loading, some of which comes from an underlying hyper vigilance, a side effect from the car accident that caused my ABI. I am still trying to reduce the effects of post traumatic symptomology that lingers following the collision. The hourly breaks helps reduce some of the sensory loading that occurs from simply being in a car.

In the four days I cycled I did not experience sensory loading to a level that it would interfere with my normal functioning. On the second morning I intentionally cycled through down town Toronto at the height of rush hour. I proceeded down Dundas Ave which has a marked bike lane. That allowed me to move much quicker than the cars that were crawling across town. I was aware of the need to watch for cars coming out of side streets, watch for turning vehicles at each intersection and be aware of many other cyclists that were either overtaking me or as I was passing them. At the same time that I’m focusing on the traffic, I’m taking in the honking of car horns, the noise of trucks, police sirens. Add to that the smells of sewage, exhaust fumes, bakery smells and other unidentifiable smells in a quickly changing smorgasbord of odours.

When I reflected back on the 15 km ride through the Toronto rush hour I noticed no lingering sensory loading at the end of the day. Had I ridden in or driven a car the accumulated effect would have required several hours or a day to clear my brain.

What seems to make cycling different? I’m not really sure. As part of my training by my occupational therapist to become my own detective, I have some possible theories:

  1. When I’m cycling I am moving through traffic in a different way then driving a car. I am not dealing with the possible errors that could result from something going wrong with on-coming traffic as I am way off to the right side of the road.
  2. I am moving slower than in a car or in the case of rush hour traffic, not dealing with the stop and go matter, so the neurological demands are less. I don’t need to process sensory input at nearly the speed on a bike that I need to while driving a car.
  3. I am cycling, which is a highly physical and a highly repetitive activity. Yes, I have to shift gears, and pay attention to various factors in my environment, but it seems like the physical part helps dissipate the negative effects of the accumulation of sensory impressions. Driving a car involves very minimal physical activity – moving one’s foot between gas pedal and brake. As such there is an accumulation of stresses that will continue to build till I step out of the car and do something physical. Taking a walk isn’t very strenuous but it’s repetitive and 20 minutes or so of that makes enough of a difference to continue the trip.

Challenge #2

There are times and situations in which the emotional sensory loading brings me to a point where it interferes with my normal functioning. The day before I started the trip I had just been through an experience of extreme emotional loading which left me totally incapacitated for over a half hour. Such an experience would often take 2 days and sometimes longer to clear my system. As I was biking along on the first day I had two momentary relapses that reminded me that my emotional loading was still a concern.

The one relapse happened when I stopped in to see a friend of mine. I was explaining to him that I would be cycling across Canada next month. I was overcome when I shared with him what my occupational therapist has shared with me a week earlier. She told me that when she started working with me 18 months ago, she had done an extensive assessment, she did not think my condition would improve enough to be able to bike across Canada. She was overjoyed that I had proven her wrong.

By the second day and the following days I experienced no relapse with my emotional sensory loading. I can only attribute that to the repetitive, physical workout. While being repetitive, cycling is never boring. How can it be when you are seeing the countryside or the cityscape at pace that brings out many wonderful details and surprises.

Challenge #3

Conversing with more than one or two other people at a time will put me into sensory overload in about 15 minutes and often sooner. Each night, when I came to my lodging place I visited with two people. It was a chance to share experiences and insight of the day. After completing the 4 day ride I was visiting with my daughter. Shortly after I arrived a few more people joined in. I was able to enjoy being in a group of 6 people for over two hours and later in the day with a group of 9 people for about an hour.

I won’t jump to any conclusions too quickly as there are various factors to consider. There are many different factors, many subtle, that affects how well I can survive in a group. Some things that I consider are:

  1. The nature of the topic and how it engages me has some bearing.
  2. The type of personalities within the  group. If someone is boisterous and dominating that will overload me quite quickly.
  3. The rhythm of the conversation has a bearing. By that I mean the ease with which I am able to interject into the conversation or how in tune others in the group are to noticing a quieter person who is trying to share.
  4. The coherence of the conversation. The more often the conversations breaks up into subgroups and then reemerges again has a noticeable wearing effect.

Challenge #4

When I first started biking after my ABI, I would startle every time a car or truck would come up from behind me and pass me. It was annoying and difficult to deal with because even with a rear view mirror when I could see the approaching vehicle I would be startled by the ‘whoosh’ as the vehicle passed. Thankfully that happens very rarely.

When I am cycling I regularly keep an eye on what is happening behind me. When I see a car approaching I check to see whether they are moving over, an indication that the driver has seen me. Once in awhile someone passes closer than the law allows. When that happens it leaves me slightly annoyed but it doesn’t startle me.

I don’t know why keeping an eye on traffic behind me leaves me feeling okay, while driving a car and the hyper vigilance that it induces leave me worn out.

I have taken measures to ensure a greater margin of safety as vehicles pass me. I wear a bright orange safety vest at all times. When the sky is overcast I use a flashing LED light that can be seen from a kilometer away. I put the light on flashing mode figuring that an inattentive driver will notice that much easier than a constant red light.


While the main motivation for my four day bike ride was training for a Pacific Ocean to Atlantic Ocean bike ride, it also gave me some insights into traveling by a different mode and how that impacts my ABI. Once I arrived at my destination I slept for 10 hours and then twice in the same day a 2 hour nap. Recuperating from physical fatigue is a much more enjoyable experience than recuperating from neurological fatigue. The sense of accomplishment without having incurred neuro fatigue is very satisfying and a real encouragement.

In the past four days I put myself through a more rigourous workout than the Sea to Sea cycling will be. This workout gave me insight into one part of the challenge I will be dealing with this summer. Cycling this summer with a group of about 100 people will likely give me new insights into dealing with other aspects of my ABI challenges.

And so the detective work and the detective training continues.