Triggered

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Galloping Goose Rail Trail – Near Sooke BC

A recent incident reminded me that, since my injury, dealing with traffic carries the risk of seriously changing the trajectory of my day.

Being in a car

Since my injury I have increased my endurance riding in or driving a car from a half hour to an hour without needing a break. At times I’ve managed over two hours without a break.

I’ve also improved my recovery time following a car trip from needing three or four days to recovering in as short as a couple hours.

Having done trips, some of a couple hours and some approaching five hours over the last four years I’ve had opportunities to fine tune the drive to help me arrive at my destination in relatively good shape. Well, let’s say most of the time.

When I’m not in a car

What is much less predictable for me are traffic situations when I’m a pedestrian. These are fortunately few and far between. However, when they do happen they have a significant effect on me.

I recently dealt with such an incident. Prior to my injury I might not have even noticed anything or forgotten about it a short time later.

I had just crossed a major intersection while on a morning walk. It was the morning rush hour. Suddenly I was aware of a sound of tires of a car out of control. It was not very loud but a definite change from the hum and cadence of the busy commuter traffic.

I noticed my body suddenly tense up. I was expecting a follow up sound, that would have mimicked the sequence of the accident that caused my ABI. There was no follow up sound other then a quieter repeat of the ‘out of control tire’ sound.

Next thing I knew I was in tears. Both the noise and my reaction to it took me by surprise. This kind of situation and response hadn’t happened in a long time.

What helped to reduce the stress of the situation was being aware of trigger events when living with post traumatic symptomology.

Direct consequences

I continued my morning walk, though I was in a hyper vigilant mode while there was traffic nearby. This was even more apparent at each busy intersections. I found myself in tears off and on for the next couple hours. The slightest change as I walked would set me back.

I continued my walk since physical activity that has a simple rhythm to it along with low cognitive input I find helpful for recovery. (I find cycling the most helpful but I had no bicycle available. The pedaling action creates a more controlled rhythm than walking.)

Longer term effects

As long as I was walking I was doing reasonably well. But I couldn’t keep walking all day. I returned to my lodging place after walking 11 kilometers.

For the rest of the day I was dealing with neural fatigue. I had a short nap after my walk. That did not improve my condition by much.

As the day progressed I was dealing with a low grade headache. In itself not too hard to manage. It was the type of headache that I’ve come to recognize as minor brain swelling.

I found myself operating in a non-verbal mode most of the day. Talking required too much energy. I needed to conserve my energy to simply get me through the day. By early evening and a second nap I had enough energy to talk.

After my morning walk I took a shower. The sensation of the water, particularly on my head was very difficult to handle. It was a clear indication that I was dealing with sensory overload.

Traveling Challenge

Dealing with ABI related effects while traveling makes recovery more difficult. The disruption of routines and a loss of familiar places means I need to be more cognizant of what is happening around me.

I’m glad I wasn’t asked to give input on the plans for the day. That takes too much thinking – too much neural activity. I was fine with simply going along with what was being planned or kindly opting out. I went along for the car ride which went fine. The ride was under an hour so that helped.

I joined in for a couple hikes. That was good but I needed to set my own pace. It takes too much neural energy to match my pace with others.

I opted out of swimming. The sensory loading of dealing with water was out of the question. The fact that the swimming area was fed by a mountain stream would compound the sensory loading.

Evening of the first day

Late afternoon I had a second short nap. After supper my level of fatigue had improved. Conversation was easier and therefore more enjoyable.

My sleeping pattern had been working very well for me for the past number of weeks. That night things did not work out. Well past midnight sleep still seemed a long way off.

Sense of humor

When I looked back on the day I realized I had room for some humor. Just before starting the hike near the mountain stream a couple visitors at the park stopped me to ask about wildlife. They wanted to know where they could see some wildlife. I mentioned that there was a warning sign at the park entrance that there was a bear in the area.

The visitors wanted to see the bear and wondered how to call it. I suggested calling the bear “Freddy”.

My Recovery Strategies:

– Lie low for a day or two.

– Maintain my basic daily routine.

– Stay physically active.

– Eat or snack regularly – build up energy level

– Minimize decision making.

– Minimize cognitive activity.

– Spend time outdoors in a natural environment away from city noises

– Journal about the incident (I choose to do mine in the form of a blog posting.)

Over time I have added to my list of strategies.

Day Two

After being wide awake till the wee hours of the morning I was pleased to have slept a couple hours later than usual. That was helpful. I noticed a significant improvement in my energy level.

I not long into the day I noticed that I was still emotionally quite vulnerable.

The plan for the day was to going biking with the two of us. Bikes were rented and we headed out. My goal was to get about 40 or 50 km in. I didn’t want the ride to be too short since I find cycling helps to clear my sensory loading.

It was a cool and breezy day. We had decided on following a rail trail bike path. The bike path being well away from traffic most of the time, proved to be a good choice. By the time we finished the ride we had covered about 100 km (60 miles). I was pleased with how the day went and the progress of my recovery.

Day Three

Having put in a long day of vigourous activity, and having taken only a short nap, I was pleased to get a good night’s sleep. We would be leaving the city today and spending several hours traveling by car and ferry.

I was up early so decided I would start the day with a good bike ride. Fifty kilometers later I was back for a second breakfast. I had time for a short nap before helping pack for the trip.

I was in even better shape today than I was a day ago. All very promising. That is till the ferry was ready to pull away from the loading dock. There was a blast of the horn. I should have expected that but hadn’t been paying attention. It lasted longer than the blast we had a week ago coming to the island. That one hadn’t effected me beyond the initial startled response.

The ferry horn blast today was just too much. My brain went ‘numb’. I was in serious sensory overload. I could only manage basic functions. I just sat where I was. With my hands over my ears I muted the general noises around me. For the next half hour I focused on getting my sensory loading to level off and help me relax. Eventually I managed to read for awhile. Conversation would have been difficult.

Not long after I had started to read again there was an unexpected blast from the horn. There had been no second horn blast on the way to the island. While most would describe the sound as ‘ear piercing’ to me it was ‘brain piercing’. Having the second blast so soon after the first one was devastating. While it might sound melodramatic, my best description is that is felt like my brain had been split open. The effect was exponentially worse than the first one. (Think of it as hitting your finger with a hammer the second time within the same hour.)

The effect of the second horn blast took me much longer to cover. The sensory overload that resulted set me back several hours before I was able to engage with others.

One of the side effects of the ‘brain piercing’ event is experiencing ghosting. (Some people call it double vision.) Everything I looked at had a shadow. I wear progressive bifocals and so I can experimented with looking at things through different parts of my glasses. It didn’t change anything.

By evening I found it impossible to focus. Only nearby objects were clear enough enabling me to still read. Thankfully by the next morning the ghosting had cleared.

Summary Points

Developing the knowledge to manage ones sensory loading had a direct bearing on ones quality of life. Some factors to consider to reduce the repeated occurrence of sensory overload can be summarized as:

  • Every sensory input affects ones sensory loading, including thoughts.
  • Sensory loading can and will be carried over from the previous day or days.
  • Certain sensory events can be tolerated if ones sensory loading isn’t too close to the limit.
  • There’s no clear measure to know how close one is to reaching sensory overload.
  • The recovery time will depend on the nature of the sensory loading and the intensity of the sensory event.
  • Each person needs to find an effective recovery strategy that works for them.
  • Ones resilience to sensory input will increase the longer sensory overload is avoided.

Feedback

Acquired Brain Injury (ABI) is different with every person. The severity of the injury and the areas of the brain that are affected makes each injury unique. There might be lessons learned from others but each person becomes their own detective in learning to live with the injury.

The above list is a summary based on my experiences. I would love to hear from others based on personal experiences. What would you add to the list? What would you modify from this list?

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Travel Challenges

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Veteran’s Park – Burnaby, BC

This trip started much better than a trip I took earlier this year. This trip started with a pleasingly successful flight.

It has now been a week of effectively managing sensory loading. Having managed to curtail the negative fallout of a plane flight across the country I resolved to maintain my level of mindfulness in staying attuned to my sensory loading. I am well aware that it is very difficult to recover from sensory overload when I’m away from home or in unfamiliar surroundings.

After arriving at my destination a week ago, after my flight I chose to deal with my neural fatigue with a 25 km cycling tour of the city. Doing a vigorous 25 km ride enabled me to get a good night’s sleep. The activity had cleared the neural fatigue so my time sleeping could clear my physical fatigue.

Each morning since arriving I have done a bicycle ride of 10 to 50 km before joining my hostess for breakfast. This routine followed by a short nap after breakfast has enabled me to participate in a variety of activities the rest of the day. This has been invigorating and very encouraging.

It has been very helpful to have set up an effective routine to start each day. Being in unfamiliar surroundings while being away from home and away from familiar environment and routines, having a new and consistent routine is helpful to reduce the risk of sensory overload.

Lesson learned

The need and the beauty of enjoying a successful transition while traveling was highlighted today when it fell apart on me.

My routine was changed today. I did not have time to put in a one or two hour cycling trip. I limited myself to a half hour. I needed to give myself time to pack and meet the ferry schedule.

Aborting or seriously altering my morning routine affected me the rest of the day. I just couldn’t seem to wake up fully. Time and again on the way to my next destination I would nod off.

Making Choices

In between the fits and starts of napping I did some reading. I read about half of “The Reason You Walk“. The book is Wab Kinew’s personal and family’s struggle growing up and living as an indigenous Canadian. Kinew’s family are residential school survivors.

In hindsight this was not a helpful choice of a book to read today. My sensory loading because of the troubling emotional struggles Kinew shares added to my challenges today.

Choosing some light reading would have been a smarter choice. Had I not set a goal of finishing the book before I needed to return it, I might have made a better choice.

No short cuts to planning

This once again highlighted for me the need to plan carefully anytime some significant changes happen in my life. There are usually a combination of related factors that need to be considered.

The planning for today should have started when the ferry was booked a few days ago. Had I considered the time the cycling would have taken in my morning routine I would booked a ferry for later in the day. That would not have disrupted my morning routine – which in turn had a domino effect on the rest of the day.

The idea of structuring this trip so we would spend a longer block of time in two different places was a good plan. The success of the first week is proof of the plan being good.

Planning the start of the trip was done with intentional detail. Yet I completely overlooked the importance of planning the mid trip transition.

Moving forward

We learn from our mistakes. Or to put a slightly different spin on it, I need to learn from my oversights. When things go well it is so easy to overlook the importance of making thorough and well thought out plans.

I will see how tomorrow presents itself to me.

The Catch 22 of Acquired Brain Injury

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Catapult

I attended an ABI (Acquired Brain Injury) workshop, and support group recently. It was new experience. It left me musing about a number of things.

Even though no two brain injuries are the same there are some common elements. Memory loss and the loss of ability to problem solve seems to be most prevalent. Loss in the area of executive functioning is a close third. The challenges surrounding these three skills can be very frustrating. Frustrating because these are some of the key skills most needed in adjusting to a post injury life. The ability to figure out, implement and remember the changes that are needed is a key part of developing a quality of life post injury.

It’s the skills or abilities that are lost due to brain injury that are most in demand to regain a reasonable quality of life.

Memory challenges

With the loss of memory, learning to live with a post injury reality has numerous challenges. Making new procedures part of a daily or weekly routine are hard to adopt on a consistent basis. Additional demands are placed on ones memory, whether it’s dealing with additional appointments, remembering what activities to avoid or minimize, dealing with agencies such as insurance or other injury support agencies.

The need to problem solve is a skill that is in higher demand post injury. Learning how to accomplish tasks or daily activities with reduced mobility or much reduced level of energy. The reduced energy if often from loss of energy due to neural fatigue.

Strategies to the rescue

Learning new routines can be difficult. Learning new strategies to help remember new routines results in changing one’s life at two different levels of functioning.

Over the past 4 years I have gotten used to receiving two kinds of reminders. One type of reminder is getting a prompt that it’s the time of the day that I need to do a particular activity or head out to an event.

The second type of reminder is getting a prompt about the strategy that I should be using. For example, I recently had my family doctor complete a medical examination for renewing my driver’s license. Because of the residual effects of my injury my completed form does not go through the normal route that I have done for several decades. As I left the doctor’s office he reminded me to read the instructions to ensure the form was sent to the correct place. It hadn’t crossed my mind to check the instructions till he pointed that out. On top of that I was surprised that I hadn’t thought of it myself.

That is just one example of how the deficits I am dealing from my injury requires new strategies in order to compensate for my injuries. I have had to apply this to various areas for which I continue to take responsibility.

To make sure bills get paid on time I take the bill as soon as it arrives and open my online banking app.   I will then post date the payment so that I don’t have to remind myself and risk a late payment charge. However, applying this strategy on a consistent basis continues to be a challenge.

Executive Functioning challenges

Some tasks I find too complicated to take on myself. The most challenging one is getting reimbursement for expenses covered by more than one insurance company. Prior to my injury all my medical expenses were reimbursed through my work place insurance plan. Great. So simple.

With my injury I had the unfortunate challenge of having to deal with a two step process. I needed to first submit my expenses to my work place insurance and then to the auto insurance. It’s keeping track of the different steps along with the delay between submitting receipts to the first insurance company before I can submit to the second insurance company that things go awry. When I was at my lowest level of personal functioning that’s when I had too many of these. I finally resorted to having someone else take care of it for me.

Problem Solving challenges

Once I had recovered sufficiently from my injury to take on some projects I quickly realized that I had issues with problem solving. The problem solving issues appeared in two different formats.

  • Undoing mistakes

As I was building things I found myself forgetting some of the techniques I had learned over the years. This was frustrating as I was used to going ahead with projects knowing how to do it and expecting to be reasonably successful. The errors of cutting materials incorrectly and having to redo different steps in a project was disappointing and at times frustrating, not to mention wasting good material. Also, errors in the early stage of a project required some heavy duty problem solving to correct the situation. Needless to say, neural fatigue would set in rather quickly with that type of cognitive demand.

  • Planning

In order to successfully do the types of projects I had been familiar with, I realized that I needed to be intentional about the planning stage. It was no longer good enough to have a general overview of what I wanted to do. I now needed to plan each step and have a clear picture of how each stage of the project should unfold.

20190427_093247Recently while building props for a Medieval birthday party for my grandson I was very intentional about doing it right. I took on the challenge of building a functional catapult for attacking a castle. Every time I needed to think through a particular detail I would put the work aside and work on a different part of the party preparations. That gave me time to mull it over.

It might appear easier if I had downloaded an instruction booklet and buildt the catapult based on someone else drawings. I considered doing it that way, but that would have added a very different challenge, one of following someone else instructions. That would have contributed more quickly to neural fatigue. I chose to build my design and incorporate the materials I had on hand.

The last step in building the catapult, getting the tension tight enough was a two person operation. In the end I was able to make the catapult work reasonably well. In addition to that I was able to complete the castle, eight feet high and twelve feet wide to add an element of realism.

On the day of the party each guest was given a wooden sword, which my grandson had painted, and a wooden shield to decorate, which my son had made. This was greater than any ‘loot bag’ they might have gotten at a birthday party.

Being Intentional

With building the medieval props I knew I had only one week. I was mindful to carefully pacing myself, having my grandson or son complete some of the things I had committed to but couldn’t manage to complete before the deadline.

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Memorable castle under attack

Had I not planned and paced myself I might not have completed the props I had agreed to make. I also might not have been in a condition to enjoy the party. It’s so easy to fall into pre-injury pattern of doing things in the excitement of getting things ready for a exciting event. That would have been to my detriment.

Midway through the party I stepped away and crashed. I was helping the kids with the catapult. Dealing with groups of four or five kids and their energy level quickly drained my energy. When my part of done I walked away and crashed. I slept for an hour and  a half. Success for me was contributing in a significant way to a memorable event for my grandson and the fond memories for myself of being part of the event.

Needing a day or two for recovery time following the event was not a hardship. It left me with a sense of wanting to take on something like that again… though not for a month or so.

P.S. If you live within traveling distance you are welcome to borrow the castle and catapult. You need a 16 X 16 foot (4.8 m X 4.8 m) area to set up the castle plus room to attack the castle.

 

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. The journey of recovery started 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 last part of the trip. 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 out of town trips by car. I would work out an alternate plan if I could not complete the trip. One time I under estimated my level of endurance without having set up an alternate plan. I had to arrange for someone to come and get me as I was unable to drive home.

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 prompted 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. Driving in 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, the constant need to remain focused. 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. (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.

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.

Acclimatizing to a new Reality

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Handrail for safety

It’s been over three and a half years since I’ve entered the world of ABI (Acquire Brain Injury). I haven’t written in a while due to trying to adjust to the shift in my reality. I’m coming to terms with the realization that there are aspects of my injury that are not likely improve.

In the months immediately following my injury, there was a level of hope and anticipation that came from learning about the injury and seeing improvements albeit very gradual. It was mainly in looking back that I could recognize certain improvements.

The hard part is the transition from seeing hindsight improvements to coming to terms with various areas in which further improvements are not likely to happen.

Accommodation routines

I’ve gradually developed routines that helps me mitigate symptoms that would otherwise push me into the area of neural fatigue and sensory overload. Key is having things carefully planned out. The planning is more specifically focused on anticipating unexpected changes in plans or expectations.

I have a recent example of having carefully planned out a project. I had wanted to build a handrail for my daughter so that their front entrance would be accessible to seniors and others with mobility challenges.

The Project

I had taken measurements and created a list of materials and tools I would need for the job. Since it was a simple project I could reasonably expect to complete it in a half day. For good measure I gave myself a full day to do it. I could make that fit into a weekend visit involving a 4 or 5 hour one way trip.

A last minute change in design meant that I had to run to the hardware store and buy three ground spikes or as one retailer calls them, “Big Mike” spikes. It required a visit to two different stores in two different towns to find a store that had enough of them in stock. Fortunately the staff at both stores were very helpful. Had I been left to fend for myself the project would have gone off the rails before I even started.

I arrived from the store with the necessary supplies. All went well till I tried pounding the middle spike into the ground. Turns out there were the remnants of an old sidewalk that made it impossible. That required some rethinking. I needed to find a different way to secure the middle 4X4 cedar post.

You might think. That’s not too difficult. Pre-ABI I would have thought nothing of making the change. The logical solution was to attach the 4X4  into the side of the steps. So simple. Nothing complicated. Go back to the store and buy a Tapcon, get the drill and in a couple minutes the post is in place.

For me it just about meant being unable to complete the job. Mental flexibility continues to be a challenge. The process of thinking of an alternate way of securing the 4X4 post meant the original plan which I had carefully thought through had to be changed.

Making the change meant I needed to go through a cognitive process that zapped much of the energy out of me. Rethinking the project and trying to make adjustments on the fly created noticeable neural fatigue.

Time and again when I go through a rethinking process I’m reminded how many cognitive steps are involved. When one’s brain works efficiently, one if able to make the changes on the fly and not even realize all the mental changes that had to be made. With injury in one part of  my brain, another area of the brain takes over. It can do the job but seriously lacks working efficiency.

Had I had a couple days to complete the project, the best plan of action would have been to stop construction for the day, take some time to understand the change in design and finish the project a couple days later. No neural fatigue. Minimal chance of making errors.

However, since I had only given myself one day at the most, I continued the project. I slowed done since neural fatigue drains energy from the whole body. I found myself humming, tuneless humming, which is a further reminder that I am not in a good space.

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A simple job done

Consequences

I was pleased to have the job completed by supper time. Even though I was totally worn out, I was feeling pretty good. The ‘Cost / Benefit’ factor was such that I was in a very good space. I had achieved my goal. I knew that completing the project with the side effect of neural fatigue would come at personal expense.

I hoped that a quiet evening and a night of sleep would put me back on a good track. Even though I had my doubts the next morning I pushed ahead. I realized after the first couple of hours that I needed more recuperation time. Engaging in simple conversation was just not working. Focusing on what was happening around me just wasn’t working.

My best option was to take some personal time. I went for a walk. The minimal physical exertion helped my body to gradually shed the neural fatigue. The repetitive motion of walking and the minimal cognitive demands made it an effective choice. Walking by myself meant there were no social demands, no expectations to engage in conversation or respond to someone else expectations. By mid afternoon I was ready to visit, drive or participate in activities with other people.

Expectations

Time and again I’m reminded to have a contingency plan in case things don’t work out as expected. If I have time on my side, I can make it work without putting myself into a lengthy recuperation phase. It’s either make more time to complete a project or else take more time to recuperate.

Sounds simple in hindsight. As they say, “Hindsight is 20/20 vision.”