Today was a wonderful day. What could be more exciting and enjoyable than to be invited to my grandson’s school for a special event, solely dedicated to grandparents. The invite included a wonderful musical performed by the whole student body, wonderful because I was seeing children from ages 4 to 14 singing their hearts out.
We had driven down the day before and took lodging near by. We arrived at the school with time to spare. We had comfortable seating with refreshments in hand. The performance was heartwarming.
What was not to like? What could go wrong…. well not really wrong. just a few twists and turns in the road for me.
As the musical reached its finale I reached my limit. Suddenly I realized that I was into sensory overload. Too late to explain to anyone what was happening. I knew I needed to find an inconspicuous way out of the building.
I was reminded that live music has a double sensory loading on me. Live music increases my emotional vulnerability in addition to processing the sound and lyrics.
A Brief Analysis
How could such a relaxing and enjoyable event send me into shutdown? Simple. I can only take in so much and my body tells me its had enough.
The event contributed to emotional sensory loading.
The event contributed to sound and visual sensory loading.
The event contributed to social sensory loading.
Each of these domains involves complex brain activity.
With emotional sensory loading I’m reminded of being in the role as school principal and host for such an event. I’m observing students performing and the various social dynamics that occur between students. I’m observing other seniors and the various health challenges that are in some cases all too obvious.
With sound and visual sensory loading my neural processing is extra busy since I’m in an unfamiliar setting. The colour, the textures, the ambiance of the room, the chattering, the noise volume variations all require sensory processing. At a certain point there is a “traffic jam” of input that suddenly makes the whole experience one of total chaos. Like in a traffic jam, the flow grinds to a halt, not without negative consequences.
With social sensory loading I’m processing tone, body language, facial expressions, formulating responses, while taking in all the sounds, sights and smells of the space I’m in.
In spite of all the sensory loading, I am fine carrying on a conversation, one on one in a relatively quiet place. That works because the “traffic jam” of sensory input his gone. The environment presses on my brain at a speed or “bandwidth” that neural network of my brain can handle. It’s like having an engine idling. No limits are being pushed.
Break Time
With eight years of experience I have learned enough to know what to do. After the students had filed out, I made my way out of the gym. I found a quiet place and sat down for a bit. I then sauntered over to where my grandson was having a snack break. He took me down to his classroom and gave me a tour of his classroom; his table with is his name on it, his cubby for his learning gadgets and his spot in the cloak room.
I took a brief walk outside. Letting the calmness of the gentle rain get be back into a pro-social receptive space.
I came in for a light lunch. I filed past the spread of food, made my selections and made my way to a table in the far corner of the gym. Within a few minutes I found myself once again into sensory overload. The gym with its bustling of people, the chatter over lunch was simply too chaotic for me. I headed for the nearest exit, stepped outside, with my lunch plate in hand and watched the students enjoying themselves on the playground.
Time to Leave
Today my body was repeatedly giving me a signal that I was constantly on the verge of sensory overload. The nagging sense of nausea was a clear and subtle reminded. Not the kind of nausea that makes me beg off food. No I need the energy that a snack or lunch will provide.
The drive back to my lodging went well. Fairly routine activity of driving along familiar roads. However, I was pleased to lay down for a bit. The next thing I knew I had slept for two and a half hours. I soon realized I had achieved only minimal recovery.
For supper we drove 2 km to a bar and grill. It was conveniently close by. I stepped inside, took a look around, hoping to find a quiet place. With the loud chatter, three TV’s each with their own channel, the cramped space, I very quickly succumbed to the chaos and went into sensory overload. I made a hasty retreat.
Ten kilometers down the road was a familiar restaurant. As I walked in I quickly realized that the crowding, the many TV screens and the crush of people, that I needed a better option. I looked into the screened-in outdoor dining area. I walked in there and noticed the heaters along the wall. This certainly look promising, or so I thought. By the time the waitress came to take my order I was unable to even talk to her because of my sensory overload.
My only option was to arrange for a takeout order. Take the food back to my lodging and enjoy my Friday evening supper in a quiet room. The return drive added an extra challenge. The newscast played an interview with a woman who had gone through a three day ordeal trying to escape the Congo. I was once again reaching my sensory limit.
A Wonderful Day
As I finished my supper I looked back on the day and was thankful. It was a wonderful day. Reading my body in a timely manner was good. It helped me avoid a total shut down. It avoided finding myself in a potentially embarrassing position.
I was pleased with how well I have learned to listen to the messages my body is giving me.
It took me about a year and a half to build the pentagon gazebo pictured above. I did it at my own pace with no firm deadline. I milled the finer pieces from the larger members I salvaged. I planned it out as I went depending on the materials I had on hand. Some days I would just contemplate how to get the effect I wanted. There was no reason to rush other than wanting to see if completed. I didn’t push myself if it wasn’t a good day to work on it. If other things needed tending, I would let the project sit.
This was one of several projects I have been working on in the past few years. I work at it on my own schedule and have set my own completion dates. In other words, no firm deadlines. Success is completing the project while avoiding sensory overload not necessarily meeting a firm deadline.
In the last little while I have been quite successful in managing to keep my sensory overload under control. It has allowed me to participate in activities that normally would have put me into sensory overload. Ensuring that I have a proper down time to off load the effects of the day is a daily necessity. That makes it possible to begin each day with minimal residual effects from the day before. The longer I can manage to avoid sensory overload the greater my tolerance becomes.
There have been a number of strategies that I make a point of remembering.
Pay attention to the signals my body gives me when I am approaching sensory overload.
Pace myself by anticipating the sensory loading specific activities will have on me.
Schedule rest breaks before my body give me signals.
This is all fine and good as long as I remain vigilant and remain within my limits. Having had a very good run lately of avoiding sensory overload can easily lead to one of two problems.
First, I find myself going into denial. I’m not experiencing noticeable side effects and begin to tell myself that the TBI challenges have been cured. Even though I know that while I can expect improvement, there is a certain amount of permanent damage.
Second, I get careless. I think being a bit careless is somewhat excusable. I have successfully navigated a number of activities lately without experiencing sensory loading challenges. A big part of the success comes from being able to start each day with the sensory loading of the previous day having been ‘off loaded’ through proper rest and down time.
Ignoring what I shouldn’t have Ignored
The Underside of the Gazebo
When I’m on my own schedule I find I don’t get careless about monitoring my sensory loading. I will change up my activity a few times during the day. The change in activity will make me more aware of signals my body gives me. By changing activities I don’t get overly absorbed into one activity and end of ignoring everything else around me, including how I personally am faring.
However, a couple days ago I was working on a volunteer carpentry project. I was working in tandem with a second person. Near the end of completing one of the tasks my body was giving me signals that I needed to take a break. The work was cognitively more demanding than I had anticipated. We were building a partition in a cramped part of the building. This meant that the normal method of preparing the section of wall wasn’t possible. Instead each stud had to be measured, the studs had to be nailed in place in the right order so as to not “paint ourselves into a corner”. And each stud had to be cut at a precise length to facilitate the process of toe-nailing the wood in place.
I should have taken a break as soon as I noticed the first signals. However, that meant disrupting the work with my partner. So against my better judgement I pushed ahead, figuring that part of the job was almost done.
When I did stop for a break, it was too late to expect to get anymore work done that day. I was way past the point a realizing quick recovery. Instead I slept for about an hour and then headed home. I was dealing with all the side effects of being into sensory overload. There’s nothing like regret once the consequences of a bad decision hits home. I took it easy all evening and seemed to be on the mend.
Next Day
The next morning, being Sunday morning I decided I had recovered enough to attend a worship service. Normally I would have stayed home the day following a sensory overload incident. Just for good measure. However, today was a special event so I wanted to be part of it. No sooner did the worship service begin, and the first notes of the song reach me that I realized I was no where near having recuperated. I made a hasty exit.
I am the vine. You are the branches.
I had recently managed to make it through a few worship services and had been able to tolerate the live music. Today clearly wasn’t good since I was still carrying the sensory loading from the previous day.
I ended up modifying my activities for the balance of the day. I was able to listen in for the speaking parts of the liturgy. The lunch that was served after the service I ate in a quiet area of the building. Even walking through the hall where the food was being served and eaten by the rest of the people was a challenge. I was thankful when someone offered to take my empty plate to the kitchen for me. I didn’t have to enter the noisy hall one extra time. Once I got home I spent some time outside. The minus 8 Celsius with a slight breeze was fine. The rhythmic activity of clearing snow was just what I needed. I cleared the driveway. I cleared the walkways. I cleared parts of the roof. The minimal cognitive demands, the quietness of the outdoors and the vigorous physical workout was just what I needed.
Setting my Own Schedule
In looking back on the past two days there was one simple thing that interfered with the proper monitoring of my sensory loading. Instead of being on my own schedule I was trying to fit into a schedule that didn’t work for me. Wanting to complete the project so I wouldn’t disappoint others. Except they would have understood if I had bowed out early. At heart it was me trying to not disappoint myself. I wanted the satisfaction of having completed the project. And the next day I didn’t want to miss out on the special event.
Conclusion
It’s so easy to be one’s own worst enemy. I know I need to monitor my sensory loading. I know where the ‘trouble spots’ are. But it takes less effort to deny my TBI and hope to carry on without consequences. That just doesn’t work. Managing my sensory loading is an ongoing job. I can’t take a holiday from that task.
So meanwhile I need to be mindful of my activities and the level of engagement for the next week. I need to intentionally work at clearing my brain of the sensory loading so I can get back to a point where each day becomes a fresh start. A fresh start rather than starting the day with my normal endurance being compromised.
I have a plane trip booked in a little over a week. I need to actively plan my days to clear the backlog of sensory loading. I don’t want to spend the better part of my holiday out of the country recuperating from my one misguided decision.
WiFi and Wireless Cables are not the only wires that are crossed.
Most of my challenges when it comes to managing my ABI symptoms happen when I’m away from home when my routines and familiar places are disrupted. When I’m home things are generally predictable. If I get into an unpredictable situation, being home allows me to return to a reasonable level of daily functioning within a day or so.
Recently that pattern was disrupted. I usually don’t post a blog while I’m at loose ends. This is for two reasons:
I usually choose to share once I’ve more of less figured out what is going on in my recovery strategies.
I usually lack the energy to post a blog or lack the cognitive coherence till the neural fatigue clears. Set backs often involve cognitive overload and so I need to consider the demands I put on my brain.
This time I’m in the middle of a multi-day slump with cognitive and neural fatigue. My ability to deal with situations is at a low point. I’m not adverse to having people around me but as soon as someone drops in for a visit, not matter how brief, I realize how fragile I am.
When I have a visitor I will muster my energy, especially after a nutritious snack, and manage to participate in a limited way in the visit. Receiving a visit when I’m at a low point helps relieve some of the isolation while at the same time it accentuates the isolation that comes with living with ABI.
How Did I Get Here?
The discouraging part of hitting a low point for several day while at home is the mystery of determining how I ended up there. This week there were no challenges such as I am accustomed to dealing with while traveling or even being out of town for a day. I’ve been close to home all week. Haven’t been further than 50 km from home and then only for a few hours.
I was first aware of my current state of ABI affairs the morning after attending the Fourth Line Theatre play, Carmel. I have been attending the Fourth Line Theatre on an annual basis. Attending a play usually turns into an event with a few friends as I did this week.
The play Carmel was emotionally taxing for me. Even though I know it’s a story, my brain lacks the filter that would otherwise allow me to keep better emotional distance. With a movie I’m better able to keep a bit more emotional distance because it is a less personal media.
In the case of watching Carmel, there was also the real life emotion of watching a young actress doing such an wonderful job, acting in real time. The emotion of the story was further highlighted with live music interspersed throughout the evening with lyrics that were both humorous and emotionally touching.
The intermission was a timely break for me to walk away from the crowds and take in the restful sounds of the rural landscape as it approaches sunset. Needless to say the second half of the play added to the emotional sensory loading that was only partially shed during intermission.
The Day After
It was the morning after the play that I became acutely aware of the challenges I was dealing with. I had no commitments for the day so that was in line with good ABI daily planning. The plan was to take it easy, do some gardening and have a mid day nap.
Technical Support Line
But life intervenes. The internet has been down for a day or more. And so I was called out of the garden to deal with the phone call with a technician from our ISP. All seemed to be going well. The technician was polite and was not trying to rush me. In addition he insisted with staying on the phone till he was double sure that every device was connected and working properly.
When things were finally resolved, after about an hour with the technician, the full force of my neural fatigue hit me. My first comment when I got off the phone was that he talked too much. Various times as he was stepping me through the trouble shooting he would keep talking.
I would tell the technician that I got it. He would keep explaining what to look for and what else might be helpful. Unfortunately I’m unable to block out the additional irrelevant information. At the same time I’m trying to make sure I don’t miss his next instruction. The cognitive demands of balancing this was slowly but surely contributing to neural fatigue.
The other challenge is that he was not good at listening. He asked me to identify the brand name of the router – a Belkin. Even though I told him he kept referring to a D-Link router and giving instructions based on a D-Link router.
Had I realized what his over explaining was doing to me, I would have stopped him. It would help if he would exercise some economy in giving instructions. (That’s my reminder for the next time I’m on the phone with a technician.)
Untimely Repair
My second matter of life intervening happened a few minutes after the phone call. It was solely my decision. No pressure except for the pressure I put on myself to get rid of an annoyance. So I felt it was an urgent enough matter. The patio door screen had been jammed for the past couple of days. Since it’s the most heavily used door in the house I decided to trouble shoot the issue. It would just take a few minutes I told myself.
After about 15 minutes I got frustrated and lost patience. I should have realized that dealing with neural fatigue following the hour long phone call with the technician was the worst time to tackle a problem solving repair.
I walked out of the room, lay down and slept for two and a half hours, waking up shortly after lunch time. The rest of the day I made no attempt to be productive. The nap did little to reduce my neural fatigue. I would move between doing a bit of gardening and reading or else just sit and ponder. This went on for the next couple days.
Getting a Handle on Myself
My emotional gauge is still fluctuating widely. As I reflect back on the earlier part of the week there was a number of things that happened that contributed to my current state. Two friends had shared some upsetting news. In both cases the news has been gradual in the making. The upsetting news had elevated my emotions before attending Fourth Line Theatre. Maybe that’s why the play Carmel had a bigger impact on my emotions than I expected.
It’s Like Martial Arts
In martial arts it’s not the strongest or the biggest person who overpowers their opponent. It’s the person who knows how to make a timed mechanical move with minimal energy to put their opponent off balance. The greater the control and the better the timing the less energy or strength that is needed.
When I look back on the last few days it isn’t that I have encountered an unusually major event that set me back. It’s more like a series of slight moves that has bit by bit put me further and further off balance. In between there hasn’t been time to recover my balance. It wasn’t till I was too far off balance that I realized what was happening.
And so, I will just have to give it time. I know from experience that gradually I will improve. And then it will seem like suddenly I’m in a good space again.
I’ll get there:
Keep a familiar routine.
Don’t take on any significant commitments.
Eat well
Sleep and nap
Keep up a reasonable level of physical activity.
The goal is to replace neural fatigue with physical fatigue.
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.
Unprepared
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.
I had not attended a live music event in quite awhile. Somehow live music makes me succumb to sensory overload due to neural fatigue quicker than almost any other activity.
That hasn’t stopped me for exposing myself to short doses of live music. Last fall I took in a half hour of a jazz music festival in a nearby town. Half hour was enough. The shuttle bus pick up spot was just outside the gate. Unfortunately it took too long for the bus to arrive after paging the driver. The extra exposure to the music put me over the top. In the back of my mind I was thinking, “Why do they have to turn the volume up so loud. Why do they give the music so much base?”
That was then. A few months later I thought I would make another attempt to ‘enjoy’ a live music event. After all, I was told that total avoidance would make things worse. So two of us purchased tickets to attend a Messiah performance put on by the Peterborough Singers. A volunteer choir with a reputation for holding top notch performances.
I thought this was a more moderate choice than a Jazz Festival. The volume would not be as loud and Handel did not work too much bass into the composition.
On the whole I managed the event relatively well, all things considered. It was a lengthy performance and there were moments that I had my doubts about making it through the whole performance. But I did. Yeah!
Notes for Future Concerts
I continue to experience gradual recovery from a TBI. One way to aid my recovery is to attempt activities in moderation. While it’s hard to do a concert such as the Messiah in moderation, there were accommodations I noted that would make the next experience go better.
Notes to self:
Have a friend reserve a seat for me and then wait outside till just before the concert begins.
Reason: The concert venue is a busy place in the minutes leading up to the start of the performance. People are bustling around finding seats and getting their coats put away.
The chatting get progressively louder and more chaotic as the place begins to fill up.
Request a reserved seat that fits my needs.
Reason: First of all, I find it helpful to be seated where I can make an inconspicuous exit should I experience sensory overload. Disrupting others or forcing my self to wait for a more opportune time to leave will simply add to my sensory loading making my recovery slower and longer and so missing more of the remaining concert.
Be mindful of my surroundings by taking stock occasionally.
My apologies to this trumpeter
Reason: One never knows whether the conductor has some innovations in mind. Just after the intermission, as the choir was getting ready for the next number, the conductor was looking my way. He looked my way a few times before the music began again. It was the trumpet playing an arm’s length from my ears that suddenly made me realize why the conductor had been looking my way. The trumpeter was standing in the aisle just behind me. First of all, the assault on my senses couldn’t have been worse. Second, the trumpeter was standing in the aisle blocking my only escape route. After a moment’s panic I realized my best option was to put my head down with my hands over my ears. As rude as it might have looked, barging past him to the exit would likely have disrupted the whole concert… and much more embarrassing.
Go outside during the intermission.
Reason: Going outside would help me get me away from the chaos of people milling around, entering and exiting the concert hall.
Second, walking helps minimize the sensory loading. So I decided to walk till I was ready to go back into the concert. Hopefully the recovery is fast enough or the intermission long enough so I wouldn’t miss any of the concert.
Have a snack along for the intermission.
Reason: Keeping up my energy level with some nutritious snacks seems to help with recovering from sensory overload. If no food is allowed in the venue, it makes the intermission even more important.
Overall, attending the concert was a success. At the same time, I have decided to not attend the Messiah for a couple of years. The songs seemed to have drilled down into my brain. A number of the songs kept bouncing around in my brain for several weeks. They just wouldn’t go away. It might be part of the consequence of my brain not being able to filter or moderate what I’m listening to. Not being able to moderate the sound input to avoid sensory overload, but also not being able to moderate the music so it doesn’t get fixed so persistently into my memory.
I will probably wait a half year or so before attempting another live music event.
I recently reached the one year point since defining a baseline. The baseline is a blog posting I composed a year ago. I outlined in general terms where I am in my journey of recovery. Or to state it more accurately, I outlined in general terms the point I was at in my adjustment to living as a neural-atypical person in a neurologically typical world.
The struggle is daily, not that there are set backs every day. It’s that a setback can occur at the most inopportune times. This unpredictability makes it difficult to commit to certain requests for volunteer help in which last minute cancellation creates a problem. It also means, that despite taking measures to minimize my sensory loading before a significant event, something can happen that will very quickly trigger sensory overload. It’s not unusual to be nicely humming along with my day and then find myself struggling seriously ten minutes later.
It’s the unexpected setbacks that makes it hard to recognize progress or improvements. It requires more than simply tracking the amount of time between setbacks. The lack of seeing noticeable improvement can be discouraging to say the least and at times the recurring setbacks brings with it a sense of tiredness from dealing with neural fatigue.
Benchmark as I defined it a year ago
It’s three years and counting since my mTBI (minor traumatic brain injury) and I’m experiencing fewer new successes. I’m gradually realizing that new successes are the greatest inspiration for hope and anticipating further healing. Even if the successes are small.
I long to see improvement in specific areas. I look forward to being able to visit someone who lives a two hour drive away and not arriving exhausted. I look forward to ordering and eating a meal in a restaurant without becoming overwhelmed. I look forward to being able to enjoy larger social gatherings without being mindful of taking regular breaks from the event.
As the time between new successes increases, it’s easy to become discouraged. I risk being pulled down by the predictable situations that remind me too clearly of my limitations;
my brain becoming ‘mush’ one minute of exposure to loud or jarring noise,
my emotional fatigue five minutes into enjoying live music,
my neural fatigue ten minutes into a conversation,
my attention waning fifteen minutes into a presentation,
my restlessness kicking in twenty minutes into an unfocused social gathering.
My limitations have a way of colouring many of my activities, namely cutting them short or ignoring the signals my body gives me and risk needing one, two or more days to recover.
Life-long Learning
A key part of my life has been life long learning. As an educator, learning is part of living. Exploring new areas can be exciting and lead to new insights.
Learning to live with ABI, while exposing me to struggles and disappointments also introduced me to a fascinating new world. Learning from my limitations I’m finding out how truly amazing the human brain is. Learning the nuances of my injury, the apparent ambiguities of what seemed to work one time and not the next time. The learning ran much deeper than academic learning. The learning was real and poignant. I was living it. The things I learned about brain injury were being understood at a visceral level.
Initially when I would experience limitations, there was some disappointment but it was balanced by the fascination of recognizing another nuance to my limitations. Gradually I’m learning what my changed ability and activity profile looks like.
Plateauing
At this stage of coming to terms with my ABI (acquired brain injury) it is easy to become discouraged. I’m often left wondering when I experience a particular setback whether that is one that becomes part of my ‘permanent limitation’ list.
The thrill of learning something new and amazing is now being more often replaced by acknowledging a growing ‘permanent limitation’ list.
New Focus
One antidote to the discouragement that threatens to invade my space is to set some goals. The hard work of understanding my healing process needs to be gradually replaced with getting on with life.
Three years and counting, living with ABI, certain activities no longer need to be planned in detail. The transition from pre-ABI has been worked out for many common activities.
One example of a living with a new routine is making a trip of more than an hour. My wife and I no longer need to plan where or how often we need to make a pit stop. We don’t need to discuss who will drive which stretch of the trip. We know the drill.
No longer having to carefully plan each significant activity in detail with possible ‘off ramps’ depending on my level of endurance makes it easier to engage in a greater number of activities.
Initially my memory and ability to problem solve were two significant factors that created its own complications. The two abilities that were most in demand in helping me adjust to a new reality were also unfortunately most compromised by the injury. This invariably creates a ‘catch 22’ situation.
The “Don’t Do” List
Recently I was asked if there are any activities I don’t do any more. I found it hard to answer the question. I can give a long list of activities I do in a modified way or carry out within a narrower scope. In fact, most activities end up on my ‘modified list. Exceptions show up in the physical domain. Activities that are mainly physical in nature requiring minimal to moderate cognitive engagement generally go well. That’s assuming there isn’t an unexpected setback.
So, what don’t I do any more?
1. No more parades. Too loud and too hectic.
2. No live concerts
3. I don’t ride a 36″ unicycle any more. Oh, but I still ride a 26″ unicycle so that belongs on the modified list.
So, the “Don’t Do” list of activities is rather short. Thankfully. The list of modified activities is rather long. Thankfully I can still do them even if it’s of a ‘part-time’ nature.
It’s the ‘part-time’ nature of so many activities that is bittersweet. Each of those activities is a not so subtle reminder of loss. The activities have not faded into the distant past.
And Now One Year Later
It was a year ago that I drafted the above observations. As I reread it I recognize some encouraging changes. For one, I attended a live concert a few months ago. While it’s no longer on my ‘Don’t Do’ list, it definitely requires some careful modifications, particularly if I want to take in the full experience.
In general my modified activities have shown improvement. My endurance for most activities have increased. Some of the improvement is a result of being better at anticipating the demands of the activity, taking breaks at more opportune times. It also helps that my resilience has improved for some activities.
I am still hoping to one day cruise around town on my 36″ unicycle. Wishful thinking? Maybe. But for now it’s parked in the garage, ready for when I’m ready.
A successful experience sometimes happens when it is least expected.
Puzzling rings
It’s not often that a pleasant surprise surfaces. Especially when it defies my usual ABI (acquired brain injury) response. Sunday’s are usually my most challenging day of the week. As a result I have learned to be mindful of how my body responds to the different parts of my routine.
I ramp up my mindfulness once I enter my church. Being mindful includes monitoring how my body is responding; the cognitive demands, the emotional loading and the acoustics of the space. I typically make it through a couple of songs. Occasionally I am pleased to make it part way into a third song. However, pushing it beyond the second song often results in my needing more recovery time, meaning I miss most of the rest of the worship time.
A Pleasant Surprise
I recently attended a worship service out of town that included a praise band with a full contingent of musical instruments; two guitars, a violin, a bass, a drum set and two vocalists.
While I was looking for a place to sit that would allow me to exit inconspicuously I had a growing awareness of the praise band. It wasn’t the particular song even though it was a familiar tune. It wasn’t the volume even though they were not holding back. I became keenly aware that the sound waves weren’t bombarding me. It wasn’t pushing me into a guarded stance. Instead, the music was gently embracing me, allowing the melody wash over me. My body remained relaxed. The music was slowly drawing me in.
For how long?
As much as I was enjoying the surprising experience, I couldn’t help being somewhat wary. It seemed wonderful to be embraced at the outset. My mindfulness was heightened because I didn’t want to be taken. I was wary of being entrapped by the gentle embrace only to find out it was trouble in disguise.
As the fourth song was belted out with full musical accompaniment I still sensed no hint of betrayal. By the sixth song I was willing to concede that there would be no betrayal.
Design
I did not crash. How was it possible? If it was the acoustics I have to give credit to the architects who designed the worship space. The acoustics were working for me rather than creating dissonance in my body. I wondered whether the lack of reverberation was enough to prevent the scale from tipping into the negative zone. It felt like the hard edges of the sound was being absorbed as the music traveled outward. It was wonderful to feel embraced rather than attacked.
Every enclosed space is designed to deal with sound vibrations and resonance differently. There are the sound vibrations that a person can hear and there are those that are outside of a person’s range of hearing. There are sounds which the ear picks up and there are sounds which the body absorbs. What is outside a person’s range of hearing, I believe, can still affect a person. Having noticed a different quality to the sound as soon as I entered the sanctuary, makes me think that the sound vibrations outside of my range hearing have a subtle but profound and cumulative affect on me.
Back home
It’s two weeks later and I was barely one song into the worship service in my home church when I realized I was approaching the limit of my tolerance. My eyes were starting to tear up and I found myself humming (not the music that was playing). I walked out and gave myself twenty minutes in a quiet place and then ten minutes walking outdoors.
I returned to the worship area but left 15 minutes later as I was still struggling. By this time extreme fatigue washed over me. I had no energy to visit with anyone in the fellowship hall following the worship service. I went and sat in the car waiting for a ride home.
A two kilometer hike in the afternoon did not improve my condition. Not till mid evening did the neural fatigue finally clear.
Detective work in action
How could two different soundscapes have such drastically different effects on me? That’s one mystery that begs an answer.
Two weeks ago I had a successful experience. It was an unexpected surprise because of several factors:
I was in an unfamiliar place (cognitive loading)
I had attended a major social event the night before (emotional loading)
I had traveled several hours by car the day before (PTS symptomology)
I was away from home over night (loss of routine)
I had hoped my most recent experience in my home church would show a slight improvement given my recent success. There are several factors that should have helped make it a positive experience:
I had an uneventful day the day before (no residual sensory loading)
I hadn’t traveled (no lingering PTS symptomology)
I was in a familiar place (anticipated routines)
There are factors that are not as apparent. For example being in a familiar place, I know the back story of many of the people – their joys and losses. Two areas of emotional sensitivity that has a way of ramping up my sensory loading.
Increased complexity
Uncovering the reasons for the contrast between the two experiences requires considering various factors. To name a few:
My emotional loading of the previous couple days
The cognitive demands of the previous day or two
How well I’ve slept
What stress factors I’m dealing with (stress being one of my key triggers)
There is one thing that I have come to expect. There is invariably a level of unpredictability to how most active environments will affect me. I can manage an activity or an environment successfully several times and then the next time find myself crash.
I can prepare myself for a significant event. That means relaxing and making a point of not pushing the boundaries of what I am capable of doing. In addition to that making sure I have minimized my sensory loading by avoiding activities or environments which cause me neural fatigue.
Despite my careful planning I am learning to accept the unexpected.
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.
Let me share one of the basic tools I have been learning to use. The tool is a very practical four step process, Goal, Plan, Do, Review, that helps me live with ABI. The real value comes with refining the use of the tool, knowing what factors to take into consideration. Just as good wine improves with age, so the tool improves with use (and guidance from a mentor).
Private stock
This tool reminds me of an educational tool called Action Research. Action Research… is a disciplined process of inquiry conducted by and for those taking the action. The primary reason for engaging in action research is to assist the “actor” in improving and/or refining his or her actions.ASCD (2000)
In education the intent is to improve the art of teaching for the benefit each student. In my case the intent is to increase my mindfulness and make informed choices to help improve my quality of life
I’ve been working with an Occupational Therapist (OT) to help me better understand how my ABI affects my day to day living. A better understanding is leading to a better management of my challenges. The use of Goal, Plan, Do, Review is the key tool in the ‘detective work’ of avoiding or minimizing obstacles during the course of my day.
GOAL – Choosing achievable activities
Recently, in reviewing my schedule for the week the OT stopped me and asked, “How are you going to do all that?” She was commenting on my calendar which showed a concert on Friday evening, with a two hour trip to a wedding shower the next day, followed by an hour and a half drive to a birthday celebration. What she was alerting me to was the need to have a plan. Failing to plan would be a plan to fail.
PLAN – Figured out the necessary accommodations
There were a few obvious issues. First of all, I was reminded that driving or being a passenger creates its own set of challenges. Second, I was reminded that music, especially live music was a challenge. Right off the top there were two significant factors that needed to be addressed. How to manage the two days without experiencing sensory overload or neural fatigue.
Failure could result in having to bail part way through the day or less drastically needing a couple of days to recover. The object is to avoid the first scenario and minimize the second. Early on I depended on the help of an OT to make sure I had recognized all potential challenges. Part of the planning involved leaving some flexibility for factors I had failed to identify. Eventually I was learning to recognize more of the potential challenges on my own. The end of the process would always determine how successful I had been with the planning.
DO – following the plan work
The most important rule is to be rigorous in following the plan. The value of the planning would be seriously undermined by allowing short cuts or deviations.
For the concert I made sure I had my musician earplugs on me and a lawn chair. Since the concert was out of doors, the live music did not come with the additional challenge of reverberating off the walls. The musician earplugs would reduce the volume of the music by 15 decibels. The lawn chair would allow me to sit further back from the action and away from distractions of spectators. To create some additional resilience I scheduled a ‘rest up’ time a couple hours before the concert.
For the two hour drive to the wedding shower, (I was actually the ‘tag-along’ for that event), we made several accommodations. First of all, we scheduled three hours for the drive. That allowed for several short stops and a longer break half way there. I made sure to have a proper lunch as well as an opportunity for a ‘rest up’ time. Can’t under estimate the importance of nutrition to keep the brain fed. Since it was a ‘women only’ shower I had time alone and a chance to ‘rest up’ for a bit.
For the drive into Toronto, I am better able to handle traffic as driver than a passenger. This is even more significant when dealing with heavy traffic and traffic jams. As expected, we made rather slow progress once we reached the outskirts of the city. Since I’m quite familiar with Toronto, I had several alternate routes in mind depending on where we would encounter traffic congestion. I made route changes based on my own judgement without discussing options. Had I been the passenger and asked to give input I would have been into neural fatigue within a few minutes. That type of discussion and problem solving has too many cognitive and social layers.
When we arrived at the party I found out there would be live music. Unfortunately I had forgotten my musician earplugs. This raised the real likelihood of having to abort our time at the party. In the end it was a non-issue. The guitar music created a calm background to the party activities.
The social dynamics of large groups create challenges for me. After doing introductions and sharing birthday wishes I sought out people who preferred one on one conversations. Surprising how many people for different reasons have difficulty with large groups. Yeah, it helps to feel like I’m in familiar company.
On leaving I drove the first part till we were clear of the city traffic. After switching to the passenger seat I became aware of how tired I was. Tired is better than sensory overload. I dozed off during the last half hour of the drive home. I had followed the plan quite closely and was pleased with the results.
REVIEW – How well did I land on my feet?
The real test as to whether my participation with the Friday night and Saturday events were a success wouldn’t be confirmed till the next day. If I slept well and experienced no lingering fatigue in the next day or two I could then confidently declared the execution of the plan a success.
Had the plan not worked, I would then need to get into the detective work of figuring out what factors or combination of factors contributed to the plan going off the rails. Sometimes unexpected situations develop that create a domino effect. For example, had the weather been hotter than expected, that could have changed things very early in the ‘Doing’. That could have required a decision to abort the second event on Saturday. Just one example of the importance of having flexibility in the plan.
In ongoing detective work of living with ABI, the main rule is don’t arrive at premature conclusions. Each ‘detective’ review following an event or series of events is to continue to build a case, to constantly work to clarify two things:
When experiencing success, determine what can be added to the list of successful strategies. At times a successful experience will show a successful broadening of an activity or adding a new activity to the list.
When experiencing a setback determine the possible culprits. When a culprit is suspected analyze the context and possible contributing factors. Don’t immediately rule out the activity. Certain activities create a setback only in combination with specific factors.
The more I use the Goal, Plan, Do, Review tool the better I am at realizing successful results.
I decided to attend an educators’ convention as an honourary member. After 36 years as a paying member I smile at being given the title ‘honourary’. Deciding to attend was easy, attending was a different story.
Preparation
In order to attend I needed to get to the event. Knowing that my driving limit is about 100 km, I knew the 200 km trip would be pushing my limit. For good measure I gave myself a slight advantage by not setting my alarm clock. I would let my body indicate when I was reasonably rested. Had I woken up at 9:00 I might have abandoned the idea of attending.
I was on the road by 7:00. I complimented my body both on being awake and getting organized and out of the house within an hour of waking. The two hour trip took almost double the time due to the slow traffic caused by the rain.
Arrival
I arrived at the event feeling overtaxed, the sensory loading and the neural fatigue had left its mark. Neural fatigue and socializing just don’t mix. With over a thousand people at the event, I felt I was in the wrong place. I had definite misgivings about staying.
Since it was almost lunch time I assembled a plate of food from the buffet table and searched out a quiet place to eat. I had to get away from the overcrowded area soon to be filled with hundreds of people. The volume, the acoustical effect of block walls, would do nothing to help reduce my neural fatigue.
Eating lunch; the nutrition and the calm location, should help to relieve some of the fatigue. Shortly a former colleague approached and asked if I was open to having someone join me for lunch. Her sensitivity, and consideration was a clear signal to extend an invitation.
Had a boisterous and excitable colleague approached me I would have cringed. Had a colleague who didn’t have the sensitivity to engage in a balance conversation approached me my fatigue would have persisted and left me discouraged. Had a colleague who was absorbed in their own accomplishments joined me I would have gone into a downward spiral.
Nature’s scuplture
Engaged
We shared laughter. We shared tears. It was energizing and refreshing. The nutritious lunch, the supportive company and the brief time to relax, rekindled a desire to participate in the afternoon events. Her awareness of my needs and mindfulness during our lunch gave me the social momentum as it helped to dissolve my isolation.
On the second day of the convention, after a good night’s sleep, I was in better shape. Another colleague shared how my experiences of living with ABI has given her insight into some of the challenges her students face. We discussed various possible challenges that neurologically atypical children likely encounter in institutional settings like schools.
Tripped up
We ended our discussion as we entered the auditorium to join in the opening program of the day. No sooner did we step inside when 800 people, accompanied by four amplified musical instruments, broke into song. For me the music had the effect of a sound canon. My only saving grace was having taken a seat a mere ten steps from the exit. Despite my quick exit, it took me ten minutes to recover. The five seconds of music had transformed me from engaging in an animated discussion into sensory overload. Unable to even speak I couldn’t alert my colleague that I needed to make a hasty retreat. Nor could I afford to delay my exit.
Reflection
In reflecting on the convention the sessions were engaging and left me with food for thought. However, I need more than that to rate the experience as ‘good’.
Despite being in the profession for more than three decades, for me the event was not so much about looking back as it was about looking forward. Considering ways to serve educators in new ways. Exploring that potential made the effort and challenges of getting to and attending the convention worthwhile.
While my ABI coloured much of my time at the convention, it did not define my experience.
Living in God's Pocket with ABI 