Stumbling onto a Living Assist

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The Shine of a New Vehicle

I have been learning to live with an ABI (acquired brain injury) as a result of a motor vehicle collision. That happened a little over 4 years ago.

Initially, one of the key challenges was driving or simply being a passenger in a motor vehicle. I eventually was diagnosed with PTSD symptomology related the collision. Being in a car for a period of time would put me into sensory overload. It wasn’t that I was hesitant to get into a car. It was the toll the low level stress or anxiety that would build each time a vehicle would approach. The bigger the vehicle the greater the effect. Whether I’m the passenger or the driver the results would be similar. Being on a divided highway helped to mitigate some of the effects.

Initially I could not tolerate any trip  over 30 km. Gradually I could manage longer trips by taking a break every 100 km. It meant having to plan each trip carefully. Not to mention that taking trips took much longer than pre-accident.

Noting Progress

Gradually the out of town weekend trips to family became less demanding. In the first couple years I would spend two to four days to recover. I would be reasonably recovered in time for the trip home. Gradually I would not need as long a recovery time once I reached my destination. At times, if the weather cooperated I would complete the last part of a trip by biking the rest of the way. The invigorating exercise of biking the last 40 or 50 km would reset my body by clearing enough of the stress build up to allow me to visit rather than taking a nap as soon as I arrived. (Needless to say the biking strategy doesn’t work too well in the winter months.)

I have also done some solo trips out of town. I would work out an alternate plan if I could not complete the trip. One time I under estimated my level of endurance without an alternate plan. I had to arrange for someone to come and get me as I was unable to drive home or could do it at too great a risk.

Some More Progress

A little over a year ago I did a number of longer trips with very encouraging results. I was still taking a break every 100 km or so but was arriving at my destination with much less sensory loading. This was very encouraging. I did not notice the change at first. Then again  I’ve learned to expect the unexpected. Sometimes a challenging situation goes unexpectedly well. Other times it goes in the opposite direction.

A Noticeable Improvement

About a year ago I did a trip with a few brief stops, and then joined other family members for a restaurant meal. (Restaurants, even if they are not busy at the time, have their challenges for me, particularly the ordering process. Too many choices and then trying to focus while a waitress recites the specials for the day.

Later that day it dawned on me that the combination of the drive and the restaurant experience had resulted in minimal neural fatigue. That caused me to take a look at what had changed in my environment. I realized the biggest change had been in my driving environment. The trip to our family usually involves driving through a metropolitan area of over 6 million people, which had also been the case on this particular day.

Driving Assists

The more that is at stake the greater the fatigue. When it comes to driving one does not want to make an error. The consequences could be life altering. So the need to remain focused while driving is paramount.

With the new car we purchased about a year ago, it included a feature called pre-collision. When the cruise control is activated the pre-collision feature can also be engaged. With the pre-collision engaged the car automatically adjusts to the flow of traffic up to the speed limit that I have preset. Moving through stop and go traffic is very effectively handled by the car.

Without the pre-collision there are just too many things to stay focused on.  Watching for  the vehicle ahead of me. Responding with the right amount of braking and acceleration to maintain a safe gap. In stop and go traffic this can quickly become too demanding. (There is a reason why a high percentage of collisions happen each day during the morning and evening  commute.) With the pre-collision I still need to keep a close eye on things, particularly watching out for vehicles that suddenly cut in front of me. The pre-collision system doesn’t respond quick enough when someone cuts too close in front of me.

The pre-collision removes one of the biggest components that causes me neural fatigue while driving. At the same time it reduces the risk of an accident. This reduced risk was borne out by the car insurance quotes I received when I took delivery of the new car.

A Safer Car

The car we took off the road was a 15 year old Elantra without collision coverage. We insured a brand new car with the same coverage plus collision. The cost was a couple of dollars cheaper to insure the new car with the extra coverage. (All other factors such as geographic area, claims record, number of demerit points etc were unchanged.) I was pleasantly surprised because I had definitely expected to pay a slightly higher premium.

If the question was put to me, “Are you a proponent of ‘self driving’ cars?” my answer would be a clear “no”. I think there are issues when choices are taken away from the driver due to automation. (Think of the Boeing 737 Max 8.)

The driving assist that was a standard part of our new car purchase has improved my quality of life. A benefit that I had never considered but have warmly welcomed.

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Messiah Concert

Messiah Concert Peterborough Singers
Messiah Concert by Peterborough Singers

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:

  1. Have a friend reserve a seat for me and then wait outside till just before the concert begins.
    1. 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.
    2. The chatting get progressively louder and more chaotic as the place begins to fill up.
  2. Request a reserved seat that fits my needs.
    1. 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.
  3. Be mindful of my surroundings by taking stock occasionally.
    1. Paul Otway trumpet
      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.

  4. Go outside during the intermission.
    1. Reason: Going outside would help me get me away from the chaos of people milling around, entering and exiting the concert hall.
    2. 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.
  5. Have a snack along for the intermission.
    1. 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.

ABI Awareness & Support

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Host site for the ABI FYI

Recently, I attended my first ABI support meeting. The event was also billed as an FYI workshop for people with ABI (acquired brain injury) and their care givers. The topic for the evening was one of 8 topics being presented by an occupational therapist during the month of March. March being brain injury awareness month.

The public facility provided us with a room that could comfortably accommodate the 15 or 20 people who attended. One thing that was immediately evident looking around the room at the attendees and seeing the different levels of engagement that no two brain injuries are alike. There were people with various degrees of mobility challenges. For some the injury was more noticeable than others even though ABI is considered an invisible injury.

Even though there was a specific topic for the evening, that did not mean all discussion or sharing focused on the selected topic. The loss of social cues that accompanies many instances of ABI was not an issue. The presenter was able to balance the needs of the participants to share with the goal of presenting the topic without being derailed.

What struck me was the level of acceptance attendees had for each other. There was clearly a non-judgmental tone to the group. I saw it as people having developed a certain level of tolerance given the struggles they might have gone through. Though I think ‘tolerance’ is not the most suitable word to capture what was happening. Rather, I would say, what was evident was  understanding, empathy, and a willingness to offer support. Support by simply listening to others. Support by simply giving a nod of acknowledgement. Support by simply giving a reassuring smile.

The session ran for about 1 hour and a half. It wasn’t till I was home that I realized how exhausted I was. This was most evident by the amount I slept the next 24 hours. I was too tired to sleep a full night. I made  up for it with a four hour and a one hour nap the next day. (If you can call a four hour daytime sleep a nap.)

Information is power

Since my injury I have read books, on-line articles and worked with an OT (occupational therapist) to understand my mTBI and make the necessary accommodations to keep my sensory loading within a manageable range.  I have also had the privilege of having a brain injury specialist shadow me  12 to 16 hours a day for a couple months. Each opportunity provided helpful hints at understanding how to deal with my limitations and understand a bit more of what is happening to me and how my body responds.

When I attended my second support meeting I realized that I could not have attended such a meeting six months ago. The level of loss that I noticed with some of the participants would have put me into emotional overload. Accepting my loss and limitations is something that continues to be a challenge. Accepting the loss and limitation in others leaves me emotional challenged as well. The emotional loading presents itself in different forms. It could be in the form of someone sharing a personal experience. It could be while listening to a first person account on the radio. It could also be from reading about someone’s story about loss. In contrast, when reading about loss in a novel it does not leave me emotionally vulnerable, because I know I’m experiencing the author’s fabrication.

Gradually I’m beginning to see the flip side of ABI. Rather than seeing the loss, I am beginning to see the abilities that are still possible. When I see people with ABI challenges I’m often emotionally overcome by the care and assistance that others give. It’s both the positive as well as the negative emotions that leaves me challenged.

What I Learned through the support group

Attending the ABI support meeting and workshop gave me a different perspective of my challenges. What I learned was very different from reading articles and digesting medical information. With the support group I experienced that:

  1. I am not alone in dealing with ABI. Others have their unique challenges in dealing with their ‘hidden’ injuries.
  2. Others are dealing with brain injury side effects that in many situations are much more debilitating. This leaves me with a sense of thankfulness that my initial injury wasn’t worse.
  3. I had the benefit of witnessing different kinds of behaviours that I might have been critical about had I not been attending a brain injury workshop. Had I witnessed this same behaviour in a different setting I might not have realized that the behaviour was connected to a brain injury.
  4. Acceptance and understanding of my limitations or limitations of another is not something that necessarily comes naturally. It’s something that takes time and effort to learn.

Topics which just scratched the surface

The following topics were presented during the month of March by the BIAPR (Brain Injury Association of Peterborough Region):

  1.  Recovery After ABI
  2. Optimizing Memory and Attention after ABI
  3. Conserving your Energy for Success in a Demanding World
  4. Communication after ABI
  5. Coping with Emotions after ABI
  6. Executive Functioning after ABI
  7. Sleep Management after ABI
  8. Sensory Changes & Sensory Hypersensitivity after ABI20190315_113445

These are only 8 topics related to ABI. And to think there are many more topics that relate to living with ABI. These 8 topics give a beginning glance at the complexity of living with ABI. For each person the challenges are unique and each have their own degree of severity. Each person’s way of compensating or making accommodations is different. In some cases the way a person compensates for their injury is completely opposite of how another person effectively compensates.

Here is one brief example. For me live music will very quickly put me into sensory overload.  For one of the attendees live music provides her the  stimulation that she needs; the louder the better. Wow!

I only managed to attend the last few workshops. Along with the handouts from the earlier ones, I was able to gain new insight into some of the ways that each of the topics impact my daily life. As people shared their experiences, the OT was able to expand her understanding of the topics. What became obvious during the sessions is that there is so much more to be learned about how the brain functions and adapts after a severe injury. In this setting it wasn’t a one way conversation with the OT giving information. In each session the OT was able to gain better insight into the finer points of living with a brain injury. Each person becomes the ‘expert’ of their version of a brain injury.

With increased understanding, comes the ability to add to one’s personal strategies for dealing with the daily challenges. It’s the challenge of living as a neurologically atypical person in a neurologically typical world.

More community support needed

The regional brain injury chapter had a one time grant to provide this valuable eight session service in our local community. Unfortunately there is no on-going funding to provide for a regular support group within 45 minutes of where I live. It was obvious from the few sessions that were held locally that there is an important need in my city.

 

I Want to go Home

Hemmingway bar
Every Drink is on the House

The children’s author, Gordon Korman has a very different take on the title “I Want to go Home”. His take is actually the reverse of what the title suggests. It would be great if that was true for me during a recent trip south.

When the winter here in Canada seems to last too long it’s great to find some reprieve by heading south, even if it’s just for a week. Took a holiday recently in the area made famous by Ernst Hemingway. The area we visited claims to have the best beach in the Caribbean. The weather was sunny andq sand was white covered with an abunqsance of seashells. In addition to that the all inclusive resort provided a wide array of food with many items cooked while you wait and complimented with a wide choice of alcoholic and non-alcoholic drinks.

This is where I found myself in the middle of February. What’s not to like when one can spend a carefree week in a place where almost everything is done for you. No need to make your own breakfast. Room service makes sure you room is clean and supplies fresh towels as needed. No need to wash dishes, stoke the wood stove, bring in firewood or attend to any other regular home chores.

It’s day three of our holiday and all I can think of, “I want to go home”.

No I wasn’t being ungrateful. I wasn’t having a tantrum about not being in a 5 star resort.

Let me explain. As I’ve pointed out, I was probably in the best place I could imagine for creating a memorable and relaxing holiday. Warm water, incredible sea life, spacious accommodations all as part of an ‘all inclusive’ vacation package. But it couldn’t happen.

A Heads Up

The reminder that my occupational therapist gave me a couple years back came to mind. When you are on a holiday, away from home, that is the hardest place to recover from sensory overload. So make sure you have decompressed and shed any sensory loading before you leave home.

I thought I had shed any build up of sensory loading. So how did I get myself into this fix?

Unplanned Sensory Loading Events

We left Canada in the middle of winter so it wasn’t surprising that the 120 km drive to the airport coincided with the arrival of a winter storm, with snow and freezing rain in the mix. To avoid some of the stress related to getting to the airport we left four hours earlier than originally planned. As a result we missed most of the storm during our drive.

During the six hour wait in the airport we watch the departures bill board, noticing one flight after another being cancelled. When over fifty percent of the flights were cancelled we noticed that our flight was still on the board. We kept our fingers crossed hoping our flight would leave as scheduled.The only hiccup before we boarded was a change in the gate number. Nothing serious.

Once we got on the plane we met with some delays. The freezing rain had made the tarmac so icy that the ground personnel would have been better served had they been wearing ice skates. It took about a half hour for the ground crew to push and bump our plane far enough away from the terminal so we could make our way to the runway.

Once our plane pulled away from the terminal we quickly realized that we were not heading to the runway for take off. Instead we spent a half hour getting the plane thoroughly de-iced. The extra half hour delay was very reassuring.

Arrival

We arrived at our resort close to midnight, close to two hours behind schedule. We found ourselves in an unfamiliar place. After waiting in line, with people milling all about, we were assigned our room number. After making two attempts to find our room someone gave us clearer instructions.

While the 28 C is something we were looking forward to, the change is too much to deal with when I’m tired. Unfortunately the air conditioner did not work. On day two we knew they had been working on it because there were tools left in our room. It wasn’t till day three that it was finally fixed.

Day trip

On day three we had planned an off resort excursion. I was looking forward to it. Part way through the day I was beginning to deal with neural fatigue. I was able to manage a couple naps between visiting points of interest. Experiencing fatigue on day three was not a good sign. The fatigue was accompanied by a worsening headache which had already persisted from before we left home. This was very different from my previous two trips south.

Downhill

Over the next few days I was finding it increasingly harder to find the energy to enjoy simple activities. I was sleeping twice a day for an hour or more in addition to a good night’s sleep. Over the next few days I wasn’t seeing any improvement. Getting a mild sunburn on day two added an unnecessary added sensory aggravation.

Being away from familiar surroundings and familiar routines increases my cognitive demands. Anything new and different takes additional mental energy. I tried to keep everything as familiar as possible. I found myself avoiding most of the food that was being offered. Having something familiar like an omelette for breakfast with fresh bread and cheese worked for me. For lunch and supper I kept it safe by having ham or beef on rice with some bread and cheese. I would usually finish the meal with some very familiar ice cream. I just didn’t have the appetite to try new and exotic foods. New flavours, new food textures all add to sensory loading. Even something as simple as yogurt seemed very watered down so I avoided that. It seemed a shame to walk away from all this great food.

I very much enjoyed one exception… bananas, fried with papaya and pineapple, prepared while I waited and then doused with rum.

Longing for Home

I was experiencing sensory overload a couple times a day. The heat bothered me. The white sands made the glare of the sun too intense. The main dining hall was too chaotic. My internal compass would not adjust to what should be north or south. I would see where the sun rose and set but I couldn’t get it to sync with my internal compass.

Being away from home made it very difficult to find something familiar, whether it’s food, familiar routines, familiar faces etc. It’s being in a familiar environment with minimal cognitive demands that could help reduce the sensory loading. By day four the only thing on my mind was, ‘I wanted to go home’.

Reducing Sensory Loading When Traveling

There were several things that I could have done differently to increase the likelihood of a satisfying and energizing holiday.

  1. Ensure that my sensory loading is at a minimum before I leave home. In hindsight I realize I started my holiday with too much sensory loading. Often it’s difficult to know where I am on the scale. On this last trip I was too close to sensory overload or the ‘red zone’ when I headed for the airport
  2. Plan the trip a month or more in advance. Don’t take a last minute travel deal as we did. With reduced mental flexibility I need more time to adjust to new ideas or plans. Last minute changes in plans are particularly difficult.
  3. When booking a flight include VIP services. It is well worth the minor additional cost. I had decided that after my last flight. The VIP service helped avoid or reduce several factors that could push me into sensory overload. The VIP service means quicker check in for luggage. It also includes a quiet place to wait after arriving at the airport. Snacks are served which helps to maintain my energy level. They personally come and get me when it’s time to board the plane, once again avoiding a lengthy line up.
  4. Plan a longer stay. (That’s assuming I leave home with minimal sensory loading.) With a longer stay there is time to acclimatize to changes in routine and environment. As things become familiar the cognitive demands are reduced.
  5. Know who your “go to person” is. When things aren’t in order, such as the A/C not working, it’s good to have it resolved promptly, not 3 days later.

In general I’m usually willing to make do. I’m not quick to lodge a complaint. I don’t expect people to serve me hand and foot when I buy a vacation package. I guess that needs to change. Given my limitations I need to learn to complain loud and hard. Or to put it politely, I must make it a priority to advocate for myself.

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.

Strategies:

  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.

Celebrating (Limited) Success

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A controlled downhill on a 36″ Unicycle

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.

Addressing Social Isolation

Zimbabwean Stone Sculpture at Zim Art

Early on when I was asked about my ABI (Acquired Brain Injury) a common observation was “It must be frustrating.” My response at that time was, “I’m glad my injury wasn’t worse.” I felt blessed for each activity I could do, even if it was at a significantly reduced level.

That was then. Now almost four years into living with ABI I must admit there are definite frustrations. The frustration of bumping up against my limitations happens more often than I would like. As a result I regularly need to curtail activities leaving me with a growing sense of isolation.

Pre-event Planning

(One could also call it ‘prevention’ planning.) When I’m anticipating a significant event I try to ramp down my normal activities for a day or so before hand. That is an attempt to lower my sensory loading and build up some resilience through having additional reserves. The lower my sensory loading is before an event the better I can fare during a social event.

What interferes with my plan of reducing my sensory loading ahead of an event are the external stressors that life sends my way from time to time. These stressors interfere with my attempts to reduce my sensory loading. This most recently included two and a half hours of dental prep work for a triple crown procedure.

Event attendance

During a social event I make a point of being mindful of my level of sensory loading. I make a point of taking a break at regular intervals or as needed by going for a 15 or 20 minute walk. Finding a place, preferably outdoors, away from the crowds, noise or activity.

The more crowded the venue and the noisier the venue the more frequently I need to take a ‘time out’. I seek out one-on-one conversations rather than joining in on larger group conversations as a way to conserve my energy. Engaging in group conversations has an exponential affect on my cognitive abilities, putting me at greater risk of neural fatigue.

Once I reach my limit on neural fatigue I can no longer function in a social setting. My only option at that point is to head home. If I’ve let my neural fatigue advance too far I need to request a ride home. (Kind of like needing a designated driver when one’s alcohol level gets too high.)

Post event

After a social event I need time to recover. The more significant the event the more time I allow myself for recovery. It isn’t always easy to gauge the amount of time needed for recovery.

Recently I attended a outdoor community event. I choose not to buy tickets to enter the venue even though several other family members were attending. I did not expect my endurance to be long enough to warrant buying a $30 ticket. I took in the event from outside the perimeter fence. That allowed me time to engage with a few people while listening to the music. Within a half hour or 45 minutes I realized I needed to leave. The music was too loud and the percussive quality of the base was affecting my body. Developing a headache very early on was a key indicator that I needed to clear out.

The next morning I felt fine. I figured the good night of sleep had given me the necessary recovery. I decided to attend our local church service. Within ten minutes of entering the church I was overwhelmed. It became rather obvious that I was far from having recovered from the brief attendance that the previous day’s community event.

More recently I had attended a wedding reception for a nephew. I had been very mindful and took regular ‘time out’s’ during the reception. I was able to take 20 minute walks along a road that followed the shoreline of the bay. After several ‘time out’s’ I developed a headache. Once again I realized it was time to clear out.

Coming away from this more recent event my body was giving me several signals that pointed towards needing a longer recovery time. The signals included:

  • a headache – low grade but a clear signal that I knew I should not ignore
  • neural fatigue – having difficulty initiating conversation or responding to others
  • physical fatigue – difficulty with muscle coordination affecting my gait when I walk and unable to carry heavier objects that I otherwise have no difficulty with. Muscle pain in area that normally are not an issue
  • unable to sleep – feeling exhausted yet unable to sleep. Two hours of lying awake before getting some sleep.
  • unable to wake up properly – Getting out of bed in the morning but not feeling awake.

Due to the need for more recovery time with my most recent event, I decided it best to cancel my plan to attend a family member’s art exhibition. As much as I was looking forward to the art exhibit, I knew it was senseless to try to attend. The drive up and back would be an issue. To go to the event and bow out after ten minutes, as happened the previous week, would make the trip utterly senseless.

Social isolation

The ongoing challenges with ABI as it pertains to attending events is becoming a noticeable source of frustration. I’m experiencing a growing sense of isolation. I feel like I am missing out on things during an event or by declining invitations for other events.

There are various factors which contribute to the sense of isolation:

  • Shortening my stay at a social gathering.
  • Interrupting my participation by giving myself a ‘time out’.
  • Missing key bit of conversation as neural fatigue sets in.
  • Cancelling my attendance at planned events

Modifying Expectations

I am regularly reminded that I can not live with the same expectations that I had pre-ABI. The challenges I experience in various social settings will likely not change much. I should not let the sense of social isolation define my life. I’ve been advised to look internally for affirmation. Reflecting on what I am able to do and down playing the setbacks.

One of my goals is to find and accept a level of social engagement that is satisfying. I expect it will take time and trying different experiences to begin to understand what that might look like.

Meanwhile I continue to keep in mind the idea of ‘cost – benefit’. It’s okay to put myself into a situation that requires some recovery time. Rather than focus on the event I end up cancelling while recovering, I focus on the memories of the recent event. By consider the ‘cost – benefit’ of an event before and during I try to avoid a recovery time that leaves me discouraged and short of good memories.