Shelter Valley Folk Festival revisited

20160904_112806One Year Later

What a difference one year can make. Last year I attended the Shelter Valley Folk Festival (SVFF), as it has been our family tradition for almost a dozen years. I was totally blindsided when I succumbed to sensory overload within 30 minutes of settling in to three days of enjoying the music. Exiting from the grounds was a challenge. The sensory overload made walking difficult adding an additional ten minutes of exposure to live music. So much for enjoying a full weekend of music.  …and no refund on my ticket.

Day One

A year later, after realizing a measure of healing, I decided to venture into the live music venue again. I had reason to believe things would go better.  I had made some accommodations. I was rationing the intake of music with the use of custom fitted musician earplugs. Technically the earplugs reduce the sound intensity by 15 decibels. That means less sensory input for my brain to process.  The first evening went well for about two hours. After that I began to get restless, began to lose focus and was feeling ‘zoned out’. That was my cue to head home. Mindfulness in action.

The timing of my decision to go home was prudent. However, the sensory loading of two hours of live music left me wired and out of bed an hour longer than usual. Also, the effects of the SVFF experience disrupted my usual pre-sleep routine. Most notable was forgetting to go through a ‘progressive muscle relaxation’ routine. This resulted in a short night, waking up much earlier than usual.

Day Two

Shelter ValleyThe second morning we once again drove the forty km to SVFF. By the time we had hauled our lawn chairs, knapsack of food and our grandson into the venue I was getting indications of reaching my limit. Having picked up on the cue, (mindfulness in action) I intentionally slowed down my pace for the day. I listened to the music from a greater distance than the night before. I made sure to avail myself of snacks regularly and remain hydrated.

In this manner I was able to take in a second day of music – six hours. No where near the twelve hours of SVFF music that would make up the full day. The part I was able to take in was relaxing and enjoyable.

I arrived home by supper time feeling tired but not overwhelmed.

Day Three

I felt brave enough to attempt day three of the weekend event. The Friday night and Saturday daytime had gone well enough to carry on.

On arriving at the festival, I realized I was not going to be able to relax and enjoy the music. After less than a half hour I wandered over to the display tents. This turned out to be a chance to touch base with people I hadn’t seen in awhile. Great conversations and some caring encouragement. That did more for me than a third day of music, having the music provide a back drop to visiting with artisans and friends.

No substitute

One thing that stands out for me is the difference between live music and recorded music. Pacing myself so as to avoid sensory overload speaks to the vibrancy of live music. Recorded music can not capture the range, resonance and context of music performed for immediate consumption, music that reflects the musician’s connection with their audience. It’s much like there is no effective substitute for visiting with friends, exchanging a hug, the smile, the eye contact and everything else that is part of sharing and being alive.

Music nourishes and revives the soul. Each song finds a place and then gradually emerges at surprising moments replaying some comforting lyrics or simply bringing a sense of wellbeing as the music replays itself.

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Ambiguity with Swimming & Sleeping

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Summer rejuvenation

The risk of swimming for me is not the risk of being carried out to sea by an undertow. This is not a matter of my swimming ability because I tackle open water knowing my swimming limitations – I’m a novice at best.

The risk of swimming is a matter of getting in over my head. Well now, that sounds like I just contradicted myself. Let me explain.

Swimming puts me at risk of Sensory Overload

Most summer days going swimming means going down to Victoria Beach and attempting to get into the frigid waters of Lake Ontario. Attempting this puts me at risk of experiencing sensory overload. Adjusting to a major temperature change, air temperature 15 Fahrenheit degrees warmer than the water temperature, is the significant factor. Add to that the intimate nature of water against one’s skin and the effect is compounded. With ABI regulating temperature differences is a real challenge. If my sensory loading for the day is low my risk of getting in over my head is unlikely. If my sensory loading is higher than I realize then I definitely run the risk of experiencing sensory overload.

Swimming is a great way to Minimize Sensory Overload

In my experience since living with ABI I find swimming an effective way to minimize the likelihood of experiencing sensory overload. Swimming seems to provide a combination of benefits. Moving around in the water is soothing and relaxing in a way the off loads my sensory build up. At the same time swimming provides the opportunity for a vigorous workout. The vigorous workout allows me to relax and get a much better night’s sleep. Being a novice swimmer entering the water invariably becomes a vigorous workout.

My Conundrum

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Invitation of sand, sun & surf

Unfortunately swimming will have one of two opposite effects on me, depending on which day it is. There are days were I very much would like to go for a swim, anticipating the relaxing benefits. When I am unsuccessful in getting into the water, I am doubly disappointed. Being unsuccessful in my attempt to enter the water means I have reached sensory overload and will need to take other measures to reduce the effects. If I succeed in getting into the water it is a double blessing. I know my sensory loading is under control and the activity will further reduce my sensory load for the day.

Fooled again

Recently I went swimming with the anticipation of enjoying the benefits of a successful swim. I arrived at Victoria Beach, and following a familiar routine of acclimatizing my body to the water temperature I did experience a wonderful swim.

To my disappointment I did not sleep well that night. At one point I experienced a troubling nightmare. By morning I woke up fatigued and having only managed seven hours of restless sleep. This was far below my optimum of nine hours a night.

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Sand formations below the rippling surface – Georgian Bay

The difficult night after having had a successful swim left me quite puzzled. What went wrong. If my sensory loading had been too high I never would have made it into the water. I tried to replay the previous day to try and understand what happened after my mid-afternoon swim that wreaked havoc on my night.

The only thing that came to mind was some news that a friend of ours had shared with Jane and I. Gradually I recalled my response to taking in the hurtful news. As the story unfolded I was beginning to feel overwhelmed. After listening and responding with questions for about ten minutes I quietly walked away. I did not excuse myself because I didn’t want to interrupt the sharing.

A half hour later as Jane and I were driving home we briefly commented about the loss and hurt that our friend had shared. We reflected on it for the ten minute ride home. For the rest of the day I didn’t give it anymore thought.

Since my ABI, I have been experiencing nightmares occasionally, something that was totally foreign to me pre-ABI. Each time I have experienced a nightmare I can trace it to an event from the previous day.The trigger events are either one of suddenly feeling vulnerable or as in this case an event of significant loss. I was unaware of the depth of the loss and how it had touched me till I went to sleep. It was in struggling to shake a nightmare in the early morning hours that I awoke to the depth of the hurt that I had vicariously experienced.

I count it a blessing, though it is a strange experience, to have intensity of my empathy for another person’s loss affirmed in my sleep.

Did that Really Happen

 

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Sea Star on the Move

A sea star or sand dollar might take about ten minutes to move half its body length. This is what’s so amazing. Before seeing the sand dollar below I had no idea that they even moved. Without mindful observation I was just seeing dark sand dollars and white, sun bleached ones. Once I realized the dark ones were alive, I found many more that would leave a trail as they scavenged the ocean bottom.

To improve my quality of life, while living with ABI, involved recognizing signals that my body gave me as being significant. To recognize my body signals is as significant as realizing that a dark sand dollar is a living, moving organism.

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Sand Dollar on the Move

In the past half year I have become more in tune with the signals my body sends me. What is most beneficial is recognizing the signals soon enough to allow me to take measured to avoid sensory overload. Early on I would not recognize the early onset of sensory overload and would stop participating in an activity once I had ‘crashed’. The problem with living that way is that it would take me up to 4 days to recover from a crash. While recovering, life comes to a grinding halt due to elevated levels of fatigue, headache and convincing myself to take measure to not contribute further to the sensory loading.

In time I have become attuned to some of the early signs. Since the early signs are subtle, they are easily overlooked if I am intensely focused on an activity. At other times I miss the early signs because the onset of sensory overload comes on gradually and the fatigue which builds up gradually dulls my awareness of impending sensory overload.

Unfortunately, with an Acquired Brain Injury (ABI) the signs are initially quite subtle. If the pain registers as immediately as hitting ones finger with a hammer that would make detection easier. However, if the side effects of an activity while living with ABI were as obvious as experiencing a pinched finger, it could signal that I’m in a catastrophic state. I base this on the notion that the greater the pain the more urgent the remedial action must be to prevent serious or life threatening harm.

In the past year and a half I have gradually begun to indentify and make note of some useful early warning signals. Here is an inventory of what I have learned:

Humming (visible)

This was one of the first signals that I recognized as an early warning. I would find myself humming or more accurately, just vocalizing to create a vibrating sound. The vibrations were soothing or relaxing. At first when I would vocalize I failed to make the connection that this was a signal that I was approaching sensory overload. Eventually I made the connection but that didn’t mean I recognized it every time it happened.

Eyes watering (partially visible)

This was also one of my first signals I recognized as an indicator that I was reaching my limit. If I didn’t heed it at this point I would soon find myself in tears. That’s much harder to miss.

Walking pace (partially visible)

This one dawned on me about five month into ABI. I was shopping with Jane, pushing the grocery cart and found it took concerted effort to keep up with her. When I would take a side aisle to retrieve an item I noticed that my pace was much slower than usual. By the time that shopping excursion was done, about forty minutes in all, I was in sensory overload. Even though this experience made it clear that this was a useful signal, time and again I would fail to recognize it.

Losing focus (partially visible)

Initially when I would lose focus I would think I had lost interest in what the person was talking about. At first that seemed no different than pre-ABI. Gradually I began to recognize the loss of focus as a signal to remove myself from the situation. Attempting to appear interested and forcing myself to concentrate on what was being said would eventually catch up with me. This could entail listening to a story telling, a drama reading or some other form of a verbal presentation.

Double vision (invisible)

At certain times I have noticed having double vision. The first couple times it happened while I was driving. The first time I figured it was a result of not wearing my glasses. When it happened again I was puzzled. I have been able to determine that it is related to driving. That is the only time I have experienced the onset of that signal. I have not been able to make a connection between the length of time I have driven or the type of roads I have driven.

Restlessness (visible)

This signal is somewhat similar to being unable to focus except that this signal included physically needing to change positions or move around.

Increased level of breathing (visible)

It took me a long time to recognize this signal. The subtlety with this signal is that it’s very normal for one’s breathing to change as one’s level of activity changes. I stumbled across this one day while dealing with some details of setting up for a picnic. While the setting up did not involve lifting anything heavy, my rate of breathing would indicate that I was moving some heavy weights around. Then, out of curiosity I checked my pulse rate and found it was at a level that indicated I was doing a low level activity.

Headache level (invisible)

After having gone through a few months of natural healing, the intensity of my headaches was starting to fluctuate throughout the day. I began to recognize the change in intensity of my headache began to relate somewhat to the demands the activity was placing on my body. My headache would indicate that the demands were becoming too high. The changes would happen whether the demands were physical, cognitive or emotional.

Mental fatigue (invisible)

At times, when attempting something complicated, I would find myself just not able to get my ‘head around it’. I knew I had to back down from what I was doing. At times my mental fatigue is accompanied by a “buzzing” sensation in my brain. This sensation is different than the tinnitus or constant ringing in my ears.

Social withdrawal (visible)

At times I’ll recognize myself withdrawing from a conversation. While this happens occasionally in a one-on-one conversation, it is more likely to happen in a group conversation. A close friend or spouse is usually quicker to recognize this signal before I do. The best way to counter this is to walk away.

Emotional sensitivity (partially visible)

This signal is not an easy one to gauge. One factor in my response to a situation is the emotional intensity of the event. One helpful point of comparison is seeing how others are responding to the same event. However, that has its limitations because everyone comes to an event with a different background. I know that attending a Remembrance Day ceremony is emotionally very intense for me regardless of where I am on the sensory loading scale that day.

Visible and Invisible signals

I refer to these indicators as signals. As signals, some of them are behaviours that happen in response to how I’m able to handle myself in certain situation. Some of the visible signals are only noticed by a careful observer because they can easily mask as neuro-typical behaviours. Though some casual observer might notice that something is ‘off’ but not realize what is happening.

Even though some of the signals are visible an acquaintance wouldn’t necessarily think anything of it.  If someone notices me withdrawing from a conversation or humming they wouldn’t necessarily see it as something to point out to me to make me mindful of how I’m doing.

With the high number of signals I have identified over the past year and a half, it might be surprising that I often miss the early warnings. The main reason is that many of these signals are not like an in your face PA announcement. The signals are subtle and don’t stand out from other sensory input I’m processing.

I have posted these signals on my kitchen wall. I hope that seeing them listed will help me be more mindful of these signals as they surface.

Being attuned to my early warning signals is my most reliable means of improving my quality of life. The complicating factor is a condition which is called anosognosia, being unable to recognize my own condition. Living with ABI means there are times that I`m not aware of my condition. That is when I need to trust the observation or sometimes the intuition of my caregiver. Sometimes I accept my caregiver`s decision without comment. Other times I engage in a discussion to convince her I’m fine with attending a particular event. At times I think I`ve won the debate only to realize later that I actually lost.

Setbacks help me heal

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Imagine the potential setbacks

Recently Jane and I chose to attend a wedding for a niece. Accepting the invitation meant making a five hour trip, arranging for overnight accommodation,  and attending the wedding ceremony. I knew I would have to monitor how much I could participate in the ceremony and celebrations.

Since attending this wedding involved a lengthy drive we decided to make it a short holiday rather than a quick drive up and back. This seemed reasonable on the face of it, as we had recently completed a successful three week holiday involving some long distances.

In hindsight I realized that having made one successful trip does not preclude that the next trip will be successful. All trips are not created equal. The success of the first trip gave me a laissez faire attitude about the need for careful planning for this much shorter trip.

The success of the major trip lay in the extensive details of the planning. (You can read about it At Risk of Over Planning) Most notable was the flexibility of most aspects. Arrival dates and times were flexible. They were easy to change without serious penalty or disruption. Sites to visit were not pre-booked. The trip involved just the two of us. Social interaction with anyone else was either optional or incidental.

Looking back on the recent wedding trip, it most notably lacked flexibility. The trip was structured around a schedule. Secondly, the ceremony obviously was in a venue determined by someone else. Thirdly, attending involved extensive social interactions. Weddings have expectations. For the sake of the bridal couple you want everything to go well, including guests blending in and having a positive and memorable time.

Tale of Two Trips

(If you are looking for a quick read, jump to the ‘Lessons Learned’ near the bottom.)

This ended up being a tale of two trips. Other than both being called trips, in all other aspect they were different. The contrasts were most notable in the outcomes. The first one included episodes of only minimal sensory overload. The second trip was an experience of ongoing sensory loading. The planning for the second trip was rather neglected. Like the behaviour of a neglected child the outcome should not have been a surprise.

We did not get the car properly packed the night before. That meant doing some last minute packing. To compound the matter, some last minute tasks needed attending on the final morning.

I ended up starting the trip with some unnecessary sensory loading. Making a rushed mental inventory, hoping we hadn’t left anything important behind should have been completed the night before.

The change in the means of travel from a pickup to a car ended up being rather significant. The car was harder to pack and organize than the pickup truck. The handy labelled tote boxes didn’t fit in the car. Therefore things were harder to find when needed.

Trying to remember where things were packed added to the cognitive sensory loading. Making successive attempts to locate things compounded the matter.

Having  upgraded our accommodations from a tent to a cabin, we thought it would be enjoyable to share it with another couple we have traveled with in the past. While this turned out to be a pleasant experience, it did not give me the necessary psychological space.

The additional social interactions adds to the sensory loading as does the need to adjust to new routines. Retreating to a tent or cabin would normally be an opportunity to alleviate some of my sensory loading.

With a wedding, someone else chooses the venue and plans the celebration format. The banquet hall meant engaging in polite conversations, having background music and listening to stories and presentations.

The music, the crowd of people talking, the presentations were all sounds that would reverberate off the walls. Even with musician ear plugs, the sensory loading hit me full force within 20 minutes. By the end of the first course I was fading. Fortunately Jane noticed. Being distracted by the busyness of the event, I had failed to be mindful about checking in with myself. Taking a 15 minute walk reduced my sensory loading enough to get me through the dinner part of the event.

The next morning we hosted a brunch for the extended family. As ten o’clock approached about 20 people descended on the picnic area outside our cabin. As we started the brunch I soon realized I was approaching sensory overload. I took my plate and walked away.

It was too early in the day to handle the busyness. Engaging in conversation was out of the question. I was mindful of the fact that I had shed very little of the sensory loading from the wedding celebrations of the previous night.

The brunch lasted about an hour. By then the deadline for vacating the cabin loomed large. We had already requested an extension so this was like an eviction ultimatum. I struggled to help move things out of the cabin and get things packed with some semblance of order.

It was not even noon and I was already close to my sensory loading limit. The cognitive demands of interpreting instructions related to clearing out the cabin and packing the car was pushing me close to sensory overload.

When we left the campground we had about a ninety minute drive ahead of us. We had made plans to visit at my brother’s cottage for a few days. I knew I was better off not doing the driving. Since the drive was relatively short I thought it was quite easily manageable. All seemed to go well. We had made one short stop. That left us with about a hour to go. The last part of the drive was eight kilometers of gravel roads with various sharp turns and steep hills. About two kilometers before we reached our destination I was fully into sensory overload. At that point I had lost the ability to think clearly enough to suggest pulling off to the side of the road. Continuing in this way for the last two kilometers compounded the effects of the sensory loading.

Travelling the gravel road, combined with the acceleration and braking to navigate the hills and turns put me into vestibular sensory overload. Adding that on top of an already high sensory loading, I was not able to speak coherently, never mind trying to come up with any logical suggestions like ‘stop the car.’

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DisAbility rail chair from boat to cottage

We went ahead with the plan to stay at the cottage for four days. I came to realize over the period of four days that my sensory loading was not being alleviated. Being a guest in someone else place is not the same as camping with the two of us. Routines are unfamiliar, you want to be accommodating to the host. The cottage was accessible only by boat. The ride across added to my sensory loading, once again putting me over the top.

The challenge in getting across the lake added to the vestibular sensory loading which unfortunately topped up my sensory loading. The boat ride was a new experience since my ABI. Had I known how quickly it put me past my limit, this visit to the cottage would have been vetoed in the planning stage. Being in familiar space with familiar routines is a key part of alleviating sensory loading.

Lessons learned

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Ready to capitulate to the demands of the Bay of Fundy

The trip had put me through a ten day stretch of living on the edge of sensory overload. Ten days on the edge did not occur without inadvertently dropping over the edge multiple times. When my environment pushes me beyond my ability to absorb and process the sensory input my ability to function operates on a very narrow bandwidth. What often compounds the issue of sensory overload is the inability to recognize how to exit from the situation.

I have developed strategies for exiting places and situations that I know could cause sensory overload. When I know a particular place or type of event will put me at risk of sensory overload I will plan an exit strategy ahead of time. It’s the new or unfamiliar situations that present the real challenges.

Dropping over the edge of sensory overload means I have lost my ability to take control of my situation. There is a helplessness. The helplessness comes from not knowing how to exit from the situation. When I reach my sensory limit, my ability to reason, think logically, or problem solve is seriously compromised. I also lose my ability to speak coherently so it’s hard to let someone know I need help or how to help.

Our next trip will be a one week stay with my son and daughter in law. I need to heed the following parameters:

  1. Keep each day flexible. Leave room to alter plans in response to my status.
  2. Keep socially demanding situations brief
  3. Keep a regular sleep schedule
  4. Allow time and space to alleviate sensory loading; brisk walking or cycling
  5. Attempt new activities in small doses
  6. Eat regularly, meals and snacks
  7. Take a break every hour when traveling

Lessons learned; the better the planning, the better the experience. Healing doesn’t just happen. It seems like I need to be an active participant in my healing journey.

 

 

Potholes in the Road.

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Lalande Rd Sturgeon Falls

No matter what road you travel, there’s bound to be a pothole at some point. Potholes can serve one faintly useful purpose, namely testing the resilience of my car’s suspension.

Today was one of those days. I hit some personal potholes. Being short changed on sleep due to the hot weather tested my resilience. I’ve learned by now, the shorter the night the greater my resilience is compromised.

I got out of bed after a 5 hour fitful sleep. My inability to sleep was probably accentuated by the whirring noise of the fan. Don’t know why people call it white noise. For me it was a black hole that zapped every thread of sleep right out of me. At four am I turned the fan off. Why didn’t I figure that out sooner?

After as slow morning I looked forward to taking a nap. If you can call a three hour sleep a nap. It’s not that the three hours cleared up the sleep deficit created by the previous night. Rather, it was a stop gap measure. However, it did little to reduce my physical fatigue or quell my mental fatigue.

The sleep deficit continued to wreaking havoc with my memory. Several times I found myself half way across the house, completely forgetting what I intended to get. Really? In recent months I had progressed to a point where I was able to retrieve two different things without forgetting one or both. Not exactly multi-tasking yet.

The sleep deficit continued to compromise my ability to review and compile a mental list of what needed to be packed for the weekend. The effort was putting my brain into overload. After about 15 minutes I gave up. My mental list read like a shredded to do list.

The sleep deficit continued to block my ability to focus my attention. The more I fought it the more my head rebelled.

It soon became evident that I could not change gears without my body grinding to a halt. Shortly after waking up I had gone to the garden to pick some tomatoes. While I was there I realized the tomatoes needed the soaker hose treatment. While getting the soaker hose I took care of some resilient weeds. Everything was going fine.

Suddenly I was called back to the house. It was time to head out for supper. Somehow I had failed to process this part of the plan a half hour earlier.

Abruptly I had to abandon picking tomatoes. But they were only half picked. I needed to switch my shoes. I looked for a book to take along. While rushing to get ready I felt the pressure to not leave others waiting. I tried to think what else I should take with me. My mind registered a blank. So I quickly ran to the car.

No sooner did I get into the car and buckle my seatbelt when I fell apart. My brain rebelled. I couldn’t see my way through the next block of time. It was like looking into a void. A void lacks a roadmap.

Jane kindly suggested that I not go along. I could stay at home and she would bring home some supper. A practical solution. A workable solution.

From my vantage, I had bailed. I was disappointed. It was the realization that my body could not do what my heart desired.

At this juncture I needed to choose a small world. I needed the familiar; familiar place, familiar routine. Familiar meant less cognitive demands. Familiar meant less chance of meeting the unexpected. I didn’t have the reserves to deal with change.

Being on my own schedule was what I needed; taking my time, switching gears when I was ready to. What I needed was some repetitive physical activity. No instructions to comprehend. No deadline to meet. What fit the bill was taking the next step in making an oversized Jenga game.  Forty eight pieces to be sanded. Pick up one piece. Hold it against the belt sander briefly. Four sides to sand. Pick up the next piece. A repetitive physical activity, unhurried, minimal exertion, the satisfaction of doing something constructive, seeing tangible results. That was the tonic that provided a measure of healing. That served as a stop gap measure to prevent a further drain of my reserves.

For the rest of the day I needed to coast. I wanted to avoid any more potholes at all cost.pothole3

Navigating the potholes is inconvenient but tolerable. I’ve accepted them as part of the journey. While they are not the ‘look forward to’ events, bouncing through them, gives me a reality check. It reminds of my limitations and an indication of some activities that I need to tag as sensory overload culprits. It also gives me a glimpse of the areas in which I am realizing gradual healing.

A Four-fold Miraculous Gift

20160803_164954A Four-fold Miraculous Gift

It was eight days into our extended holiday. I had been experimenting with different strategies to mitigate some of the sensory issues related to traveling. Each day required monitoring activities that threatened to zap the reserves that I would need to complete the day. Each day required adjusting the schedule of activities so that I could replenish my reserves for the next morning.

We arrived at our pre-book campground chosen for its spectacular scenery; Six hundred foot tall bluffs, forty foot tides (38.7 feet to be exact), broad expanses of red beaches, an unlimited opportunities for rock hounding and a tranquil location. That aptly describes Blomidon Provincial Park on the Bay of Fundy.

Preparation

When we arrived at the campground we had already worked out a refined routine for setting up camp. (The drive to Nova Scotia had included three evenings of setting up camp and three mornings of packing up and pulling out. Between the two of us we each had our tasks. I would set up the camp stove, hook up the propane and make sure the table was functionally level. I would then set up the tent, pump up the air mattress and arrange all the bedding. Meanwhile Jane would set up the campsite; unpack the lawn chairs, retrieve the necessary food supplies and dig out the required cooking utensil prior to preparing our supper. We would share the clean up, the boiling of water for washing, clearing away the dishes and securing the site for the night.

Our time camping at Blomidon turned into four activity-filled days. This included hiking several trails to a ‘look off’ (what most places would call a ‘look out’), cycling, walking along the beach for half a dozen or more kilometers, rock hounding at low tide along the base of the bluffs, reading in the campers` community building in the evening, and excursions into the some of the surrounding villages and historic sites.

After the first night of sleep I decided to unicycle through the campground. It was the first time I had ridden a unicycle since my ABI. I was thrilled to once again experience the delight and sense of awe that children express when they see a unicyclist in action. The children would run to the edge of their campsite and either just stare or be bubbling with questions. I would humour them by idling, which they  would find even more exciting, while answering their questions or responding to their comments. For the very curious I would demonstrate a few extra maneuvers before moving on.

Gift #120160330_135415

The four days of camping was the first time in a year and a half that I experienced no ABI symptoms. The wonder and joy of not having to monitor or curtail my activities gradually washed over me. I can only describe it as a truly miraculous gift. To be able to go through an active 14 hour day and experience no ABI symptoms was truly exhilarating and invigorating. Needless to say, nothing could stop me from increasing my level of activity as each new day dawned.

20160803_182928Gift #2

The absence of ABI symptoms enabled me to help out around the campsite. Being able to pull my weight and feel like I was doing my share of the work gave a boost to my self-worth. It was a glimpse of what I had forgotten had once been possible.

Gift #320160719_153215

The satisfaction of experiencing a restful sleep did not escape me. Being able to sleep ten hours a night brought additional healing. The length of my sleep was the only a subtle reminder of my ABI.

20160803_164954Gift #4

It was four days in which my sense of loss inconspicuously faded away. The emotional toll of being reminded of another loss each time I reached my limit was absent. It didn’t happen with a flourish or fanfare. My sense of loss melted away like a wave being absorbed into sand.

Moving on

The thought of leaving the park on day four was rather upsetting. How could I leave a place that had briefly turned my world ‘right side up’ again? How could I leave a place that had shown me what had once been possible? No stiffness when I woke up each morning because my ‘fight or flight’ response was under control. No consequences from failing to curtail my activities or modifying my plans. No need to plan my day to ensure I didn’t develop sensory overload. No headaches. No blurred vision. No nausea. It was amazing to feel ‘normal’ for a few days.

Some reflection

What was it about my experience at Blomidon Provincial Park that allowed me to shed my ABI limitations for four days? Will the answer escape me or will I come away with some helpful insights?

Was it the narrow range of social interaction while camping with just the two of us? Was it the variety of subtle naturally produced sounds? Even the raucous call of a murder of crows in the top of the trees is easier to deal with than indoor sounds that get amplified as it reverberates off walls and other hard surfaces. Was it the shedding of all the stresses and responsibilities associated with living in a house? Was it the absence of self imposed obligations to participate in community activities? Was it the iodine that mixes into the fresh ocean air that blew through the campsite? (The ‘fight & flight’ response that often subtly accompanies the sensory overload, drain’s one’s adrenalin glands. Iodine taken internally is one way to replenish the adrenalin glands.) Was it just a coincidence – an alignment of the stars?

More questions than answers.

A case for living more simply

One thought is that the four days of ABI respite was partly a result of a simplified life. It allowed for proper sleep hygiene, sleep being important for healing the brain. Each day was comprised of a few simple tasks. Camping involved a lot of physical activity but non-strenuous or stressful. Just to use the washroom involve a 200 meter walk. Getting water required walking two campsites over to a tap fill a bucket and haul it back. Washing dishes involved getting more water, getting it heated on the stove and then washing the dishes with a makeshift set up.

The challenge is to take the possible lessons learned and translate them into new routines and expectations when I am at home.

A Multi-Sensory Worship Experience – Really?!?!

20160726_104527A Multi-Sensory Worship Experience – Really?!?!

My guess is, if you were to to describe a multi-sensory worship experience you would likely give some variation of the following description.

You might picture a convention hall or auditorium with a stage large enough to accommodate a drummer with a full drum kit, a bass player, two electric guitar players, possibly a saxophone player, two pianists and six vocalists each with their own mic. I also see multiple projectors displaying lyrics against a video background. Oh, and there are over a thousand seats filled with enthusiastic worshipper raising their voices, singing from the heart and giving further expression through the rhythmic waving of their arms while dancing at their seat or in the aisle.

My Reality

This is my description. We have one pianist and one song leader who leads the singing for about 120 worshippers. The lyrics are projected on a 20 foot section of wall, usually with still backgrounds. The singing is a combination of young and old creating rich harmony.

Dissecting My Realty

Despite the apparent contrast between the two worship venue descriptions, the church I attend causes me to experience sensory overload. In the first couple months after acquiring a brain injury I would reach my threshold within 10 to 15 minutes. This would hardly allow me to take in even the first part of the service. Other times I would intentionally wait and come in part way through the worship service.

In addition to experiencing sensory overload during the worship service, it would take me a day or two to recover from the immediate effects. Needless to say, after a few attempts I decided it was best to stay away. I did not relish the predictable setbacks. The irony of not finding healing in a sanctuary was not lost on me.

After absenting myself for several months I thought I would see if I had experienced enough natural healing to more fully participate in worship. Having been absent for several months, I felt I had abandoned the community of worshippers who have shown me love, care, and support. This community, which I have been part of for thirty years, showed a desire to understand my struggles.

Sensory loading: Music20160726_104415

I now come armed with musician ear plugs. These are designed to reduce the intensity of the sound by about 15 decibels. This created the opportunity to participate in worship for an extra ten to fifteen minutes. It partially mitigates one aspect of my struggle with sensory loading.

The down side of wearing earplugs is that it makes me feel like a spectator. It puts me at a distance from the worship experience. The sense of feeling like a spectator is exacerbated by my choice of taking a back row seat so I can make an inconspicuous exit when needed.

Needless to say, the accommodations I’ve made makes for a worship experience that leaves much to be desired. To partially counter that, I will remove my ear plugs for one or two songs during the service just to remind me what it’s like to experience the full impact of the lyrics and music.

The sensory load is not only influenced by the intensity of the sound. Live music has a much greater impact than recorded music. Recorded music is flat. It lacks depth, resonance and emotion. Live music conveys a heart response to how the spirit is moving.

There are times when I don’t make it past the annex of the building. Those are times when, in simply approaching the sanctuary the music will hit me like a wall. It will stop me short in my tracks. I’ll immediately retreat from the sanctuary and need ten or fifteen minutes to recover from the immediate impact.

Sensory loading: cognitive

The sensory loading during worship is not limited to the music. It also builds while listening to the sermon. The cognitive demands add to the sensory load. I know I’m reaching my threshold when I start to lose focus. I find myself getting restless and can no longer follow the story line or the message that is being shared.

Sensory loading: empathy

The sharing of prayer requests also contributes to the sensory load. The sharing of requests can bring out a range of emotions. It’s the sharing of situations in which people are asking for prayer and support due to hurts and loss that are particularly difficult. Interestingly, prayer requests in which people share about healing of relationships and miraculous recovery, I find creates similar sensory loading. At times, following the sharing of prayer requests, I need several minutes to recover. This creates a break in my participation in the worship.

Each part of worship, the lyrics of a song, the text of a responsive reading, the message of the sermon, the petitions of a prayer, the confession, the giving of alms for specific ministries, each is meant to put us in touch with who we are and give expression to our life purpose. Each part of worship contributes in different ways to my sensory loading.

Managing my Time

To manage my sensory load, my strategy is to exit from the auditorium during some of the singing and selective parts of the service. At times it begins to feel more like a smorgasbord, rather than a wholesome worship experience.

Following the worship service I enjoy mingling with others over refreshments. At times the worship time puts me at the threshold of sensory overload. I will then look for a quiet place to give myself ten or fifteen minutes before joining others.

Even when I think I’m doing quite well by the end of a worship service, friends have noticed that I look tired, or my complexion lacks colour. For me Monday is my recuperation day. I generally will not schedule anything significant.

Worship is still part of my life. Worship is not confined to a building with a structured set of activities. Life provides many other times and places to experience God’s presence.  The presence of God and the fellowship of Christians can be experienced when two or three people meet.