Triggered

Sooke biking
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

eagle
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.

Bridging What I Need with What I’ve Learned

Lions Gate Bridge
Lions Gate Bridge at sunset

I recently made a trip across the country. I was pleased with how well it went. There are likely a large variety of factors that contributed to a good trip, with some things being planned plus factors just happened to fall into place.

The important thing is to make note of what plans worked. Secondly, it is helpful to make note of which unplanned factors added to the success of the trip.

Days leading up

Since the trip would have us away for home for a couple of weeks it was important to make arrangements well ahead of time. I made sure I had coverage for things that needed tending while I was away. I also made sure I packed all essential items ahead of time.

We also worked out the additional details surround our flight across the country. Commuter train times and connections. In the end we needed to take four different commuter trains. I had taken the commuter train into the city a couple weeks ago so I was not into unfamiliar territory.

The Day of

When I woke up on the day of leaving I chose to follow my morning routine. I did a 10 kilometer pre-breakfast bike ride. The vigorous half hour activity left me feeling wide awake and energized. I also spent about a half hour in the garden. I had forgotten to hoe one section of the garden the day before. It put me at ease knowing I had done the necessary tasks to reduce the growth of weeds while I was away.

Ready to head out

Rather than drive, we had arranged for a friend to get us to the train. We boarded the train with 2 minutes to spare. A 15 minute wait for the next connection would not have been a problem. When we made our next connection we  had to make our way to the far end of the train station. We arrived at the connecting train with 5 minutes to spare. Once again, had we missed that train the next one would have come by shortly. Our next connection was a shuttle train that ran regularly between the airport terminals.

Plane seating

The check-in procedure went very smoothly; no line ups, no computer glitches and what seemed like a suitable seat choice. The computer offered seat A and B. The number 30 didn’t mean anything to me. Was that over the wing, or was that behind the wing. The A and B seats suited me fine because taking a window seat meant that I would not be interrupted by a restless passenger wanting to get past me at unexpected times. I was also away from the aisle with foot traffic constantly coming and going. The one drawback was being unable to recline my seat.

Boarding and Take off

Shortly before being called for boarding, there was a request to have passenger check in their carry-on baggage. We decided to opt for that since we no longer needed what was in our carry-on. That turned out to be a great choice. Airline staff would take care of it till we landed.

When my section of the plane was called for boarding I remained seated in the waiting area. I wanted to avoid the unpredictability of waiting in line. When the last call was announced for my seating area I got up and got in line; three people ahead of me. Being one of the last to arrive in my seating area there was minimal space left for carry-on baggage. Having checked it last minute turned out to be an excellent strategy.  (Note for future flights.)

The number 30 meant I was in the very last row. The only real drawback was a slight one. I could not recline my seat the few degrees that any other seat might have allowed.

I had taken my headphones along which cancelled most of the flight noise. The drone of jet engines seem to be louder when seated in the back of the plane. I tried reading but found it difficult as I would drift in and out of napping. Sitting in napping / awaking limbo for four hours seemed to work fine for me. I did get up and stretch once during the 4.5 hour flight.

The snacks I had taken along was in my knapsack, not in my carry-on baggage. I made a point of remaining hydrated. Between the juice and ginger ale being served and my water bottle that went well. Having taken along my own snacks I had on hand what snacks worked best for me.

It was a day time flight with clear weather for 75% of the time. It was great watching the changing land forms and evidence of human activity below; the lakes and trees of northern Ontario, the farmland of the prairies with irrigation circles in places (not crop circles), tracking the traffic on the Trans Canada highway (trying to identify parts I had cycled 2 years ago) and the mountainous terrain along the Atlantic/Pacific continental divide.

Arrival

When we landed I waited with trying to get off the plane. I find it best to avoid standing line, the crowding and the unpredictability that comes with that type of active waiting.

By this point in our travel I was approaching my limit. I was tired. I was hot. And we had another 40 minutes to reach out destination.

I waited at the baggage carousel. I watched as the baggage emerged from the nether regions of the airport. I did not recognize my baggage as it arrived. Somehow my memory between checking my baggage 5 hours earlier and arriving to retrieve it my memory failed me. When I finally found it I realize they were one of the first pieced of baggage to arrive on the carousel.

The Final Leg

We had a family member greet us as we emerged from the airport. She had decided to meet us by transit rather than come by car. Even though the transit ride was hot, what helped is that it was predictable. Commuter traffic at 5 pm would have been much more challenging by car. Being escorted onto the transit system worked well as I didn’t have to figure out what to transfer and which bus to take.

Recovery

After visiting for an hour and having a hearty meal I heading out for a bike ride. I had recovered enough to take that on. For the next hour and a half I enjoyed some wonderful bike riding in what I would call a very ‘bike friendly’ city. I was familiar with the basic layout of the city so I found my way around with only one request for directions.

The success of the 90 minute bike ride was a good indication that I would sleep well. It was great to not have to go through a prolonged recovery phase. Detailed planning and being my own ‘detective’, as my OT encourages me to be, clearly paid off with this trip.

Plan ahead, take notes on new strategies that work, and leave time to make up for oversights are my strongest take aways at this time.

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.

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.