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.

 

 

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Author: Jasper Hoogendam

After 36 years as an educator my career ended due to a TBI. Renewable energy as part of 'walking lightly on this earth' has been and continues to be my interest since my teen years. Since early 2015 I have been learning to live with ABI (Acquire Brain Injury). I don't want to let my ABI limit the goals I set for myself. I'm living with a different brain, not a lesser brain. In sharing my day to day successes and struggles, I am better able to understand how my life had changed and begin to accept the change. In sharing my experiences I'm hearing from caregivers and fellow ABI's. I'm encouraged when my experiences are helping others understand some of the complexity of living with ABI.

6 thoughts on “Setbacks help me heal”

  1. The balance is difficult to achieve. My husband and I just made a two-night trip. Seemed easy enough until we realized I failed to take my walker with me (for those mid-night trips to the loo). This oversight meant that I had to unplug my electric wheelchair, maneuver it into the restroom, get my chair out of the room, and re-plug it in a couple of times each night. All of which made for less than ideal conditions for restful sleep. Life has changed in ways we then to forget.

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    1. As my ‘brain coach’ pointed out, everything you do takes more effort if you want to avoid trouble. We don’t just hop in the car to go to town. No. For example, I stop and think what condition I’m in and then try to determine whether I’d prefer the senory loading that comes from driving or the sensory loading that comes from being a passenger.
      Nurturing a new consciousness.

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  2. Good to take time to reflect on this trip after having had time to relax and give your body and mind time to catch up. Well summarised with lessons learned to be used in the future.

    On Sat, Sep 3, 2016 at 8:22 AM, Living in Gods Pocket with ABI wrote:

    > Jasper Hoogendam posted: “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 t” >

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  3. There’s always surprises when making a trip or attending an event. What makes it challenging is when the surprises pile up too quickly leaving no opportunity to alleviate the senory loading.
    You have helped me understand the importance of pacing myself and remind me of the need to temper my activities. My nature is to push my limits.

    Like

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