About a week ago, after having struggled with sensory overload for a couple of days I was happy to be riding, enjoying the countryside and taking in the sound of birds during the quiet moments along Highway 1, also known as the Tran-Canada. I was doing a century ride of 163 kms into Regina.
The first two weeks of the ride had it’s challenges. At this point things had settled down and I was getting into a workable routine.
I woke up that morning to find out that my glasses had fallen out of the mesh holder and and must have broken when I rolled onto them. The lens was lying in one place and the left arm was broken. My attention was initially on salvaging my glasses as best I could. I got the lens reseated with no apparent damage. I taped the broken arm which not surprisingly failed later in the day.
The scenario with the glasses put me behind schedule. Of all days to encounter a delay. It was going to be a hot day, and we were scheduled to pull out of camp at 5:30 rather than the usual 7:00 start. The intent was to get as many kilometers behind us before it got hot and before the favourable winds would turn against us.
After about an hour of hard cycling, partly to make up for lost time and partly to help dissipate the sensory loading of the morning’s setback, I was gradually finding myself in a better space.
On schedule, as predicted, at about eight o’clock as the thermal convection overpowered the predominant westerly flow of air, we began fighting a headwind. For the remaining 80 km of the ride we were fighting either a headwind or a crosswind. The occasional windbreak gave some appreciable relief.
Despite the elements we were facing, I was doing well and enjoying the ride. It looked like it would be a ride that would leave me with some energy to spare.
Just fifteen kilometers from the campground we were passing through a highway construction zone. As we approached the active working area I was sizing up the pile driver that was working in the median. I could see from the regular puff of smoke rising from the hammer, that it was on a 10 second cycle, pounding in steel columns for a new overpass.
There was no alternate route. As I approached the rig I covered my left ear with my hand hoping to block as much of the shock waves as possible. The bombardment of the sound waves got progressively stronger. Before I was even abreast of the pile driver I knew I was in trouble. I could feel my brain going into shutdown. I had no choice but to keep pedaling. Traffic was moving slowly but was heavy. I put all my energy into keeping myself moving forward as I felt my brain turning to mush. When I was almost past the rig I was in tears. The pounding was overwhelming, bombarding my whole body. The hand covering my left ear virtually ineffective. My eyes were stinging because of the mix of sweat, sunscreen and tears.
I remembered how one air horn blast from a truck a few days ago set my recovery back a half hour. I lost track of the number of hammer blasts. Given the time it took to pass the rig there must have been 20 to 30 hammer blasts before I was out of range.
When the bombardment of the pile driver faded enough I stopped at the side of the highway trying to pull myself together. At the urging of my cycling buddy I started cycling again to get out of the construction zone and away from the traffic.
A kilometer further was one of our refreshment stops. I made it to the stop and then knowing I was out of danger, I physically, mentally and emotionally fell apart. I stumbled around trying to get my bearings, searching for a sense of pulling myself together. Meanwhile I was too incoherent to explain to the attendant that I would be okay. At least I wanted to convince myself I would be okay. Her concern was in order because she said she had never seen me in such a rough condition.
I sat down for about five minutes to let the worst of the sensory impact fade. After a bit my riding buddy decided that if I was not ready to ride in two more minutes I should be sagged into camp.
Problem solving challenge
I was in a tough situation. When I am in crisis my ability to problem solve is seriously compromised. I had not anticipated the scenario that had just unfolded in the past 15 minutes and therefore had not considered possible exit plans.
Yet I was forced to weigh the options. Ending the ride there with 15 km to go would mean I would miss the exhilaration of completing the ride and instead have to deal with emotions of disappointment on top of the sensory overload I was already dealing with. To stay at the SAG stop meant I would not be able to do my end of the ride recovery protocol within the most effective time frame. Also, cycling is an effective way to help dissipate some of the sensory loading (unless I am feeling physically exhausted), while taking a ride in a vehicle would add to my sensory loading.
I opted to continue cycling since there were only 15 km left. I was trying to determine how much of my decision was influenced by being too proud to stop when I had managed other rather difficult parts of the tour. Had it been significantly further to the camp I would have packed it in for the day. (Easy to say that now as I look back on it.) Despite the heavy traffic getting to the far side of Regina, the rest of the ride went well, though I noticed my riding was not as steady and needed a few reminders to be attentive..
When I arrived in camp I experienced a supportive community at it’s best. My riding buddy stepped in and arranged for people to help with my end of ride protocol. This involved getting my recovery drinks ready, my tent set up and for this situation to have one person attend to me while the supports were carried out. Once things were set up I lay down in my tent for about an hour. Didn’t sleep much in that time but was away from others and could relax. A couple people told me later they adjusted my tent fly so that I would be out of the direct sunlight. The tent fly had only been installed part way so there would be additional venting as it was still in the mid 30’s C.
I am interested in see if the earplugs would make a difference. Not that I’m interested in finding out at this time. I was told the earplugs would likely have minimal effect. The nature of the pounding is such that the whole body is impacted, not just the ears. I now pack a set of earplugs with my bike just in case.
What an experience to travel with a group of people who are focused on each person being cared for. It’s like the success of the tour depends on the success of each person who is part of the tour.
There is a strong sense that we are on a big ride for an even bigger cause.
One could try to summarize the Sea to Sea ride as a simple routine of ‘Eat, Sleep, Bike’ though not necessarily in that order or at the same time. One couldn’t be more mistaken.
It has become very clear to me that life in the bicycle lane has a daily routine that is designed with a similar template. However, it’s the content that goes into each day that is as varied or rather more varied than I would sometime like it to be.
Reading My Gauge
I have learned to read my overall well-being according to how well I am able to carry out the numerous early morning routines. Once I have gone through the routines of breaking camp, getting breakfast, making lunch, doing the personal details of sunscreen and having the bike ready to roll, I measure my well-being based on how many details I missed.
I’ve decided that a score of ten is tops. For every item I forget I lose one point. If I score less than 6 I know I need to make focusing on the ride a priority. That means, minimal conversation while riding, focus on riding steady, and focus on the traffic from behind. A score of 1 or 2 probably means I shouldn’t ride that day.
A difficult visit
Earlier this week I had the opportunity to visit a friend and former colleague that took me back to my teaching time in Alberta. As the tour approached Picture Butte I made inquiries and was able to have a wonderful and meaningful visit.
My friend had a stroke a few months ago and so I knew that with my lack of sensory filters that the visit would take it’s toll on me. It was a short and focused visit. During our visit we had some tearful moments, but for the most part I was able to hold it together. We both understood from experience the difficulty of dealing with loss.
We laughed about things that I didn’t realize she remembered from when I worked with her. She thanked me for visiting. It would have been harder to ride by without stopping to visit. It really was my honour to visit her.
Once I left the building, the full impact of the visit hit me. I was in tears. I was unable to talk. It felt good to be riding, but the tears kept coming. As I turned the corner to get back onto the route I heard someone call my name. I saw a crowd of riders getting treats, and in that crowd was my riding buddy.
I had prepped my riding buddy about the visit and so she wasn’t surprised by my condition. I walked past the group of riders to a quiet spot a couple store fronts further away. My riding buddy came over and sat with me. She explained to some others who didn’t know why I was upset that I had just had a difficult visit and needed some quiet time. Our tour chaplain while respecting my need for a quiet space came over and prayed for me.
In the next two hours as I rode I once more gradually became aware of the southern Alberta scenery around me. My riding buddy was able to give me a balance of time alone and offer occasional diversions. Over the next 50 kilometers I was gradually feeling more at peace.
The next morning I knew I was still dealing with some significant emotional sensory loading of the previous day. The shorter ride mapped out for the day was a bonus.
Not thirty kilometers into the ride a passing truck driver intended to give a friendly honk. What came out was an ill-timed blast of the horn just as the truck was beside me. While my riding buddy noticeably jumped in her saddle, I was overwhelmed by the blast. I was instantly into sensory overload. I was in tears off and on for the next hour. The blast set my recovery back a half day.
The emotional sensory loading from the previous day was still at a high and sensitive level. The emotions reside in the Temporal lobe of the brain which is near the ears. The assault on the ears will suddenly put a person back into a recent emotional event. It’s like suddenly and unexpectedly being dropped right back into the event.
Despite this additional setback, when it comes to ‘cost / benefit’ I had no regret making the visit the day before. I was fine dealing with the setback and letting the rhythm of the ride gradually bring me into a better space. The routine of looking ahead, checking my rear view mirror for traffic and scanning the countryside was helping to dissipate the acuteness of the sensory loading.
The need to be aware
Not fifty kilometer further the healing affect of the cycling abruptly ended. I noticed an oncoming transport truck suddenly swerve towards me. The driver having noticed too late some debris in his lane. As he focused on straightening out his rig, I noticed the second trailer was out of control and swaying wildly as it moved towards our lane.
My riding recalls me saying, “What’s going on.” Then, “Whoa!!!”
I was trying to get her attention because she was about 3 or 4 car lengths closer to the impending disaster. I was concerned about her not having enough time to get out of the way.
My riding buddy was concerned about me. From her position she saw she was out of the trajectory of the second trailer. She pictured me being right in the path if the swaying trailer.
The driver was able to regain full control. We tried not to think about the further complication had a car been coming up behind us.
It took me about ten minutes to recover from the immediate effect of the close call. I decided I would carry on. Can’t change was had just happened. I reasoned that should a third incident happen that day I would call for SAG support and call it a day.
Coming into camp
As we approached the end of the 150 km ride my riding buddy was ware that I was still struggling with the sensory loading of the previous day, compounded by the two incidents this day.
As we rolled into camp she immediately summoned help. She had one person take the bike off my hands. She sent someone else for my tent and sleeping bag. She herself got my recovery drink ready and made sure that I lay down and begin the recovery protocol. Slept for almost two hours before supper time.
After a good night of rest, the next day was a great ride. It was a long day with 165 km to cover. Thankful for a shorter ride the day before, and ready for a long ride that day.
Why do what’s hard?
I am beginning to understand people who are able to be passionate and enjoy an activity despite dealing with suffering and difficult experiences in the process.
It’s not that I would go out of my way to do something that causes pain. So why continue with one major set back each week of the first three weeks. Somehow, with this group of riders, the greater the need, the great sense of community that one experiences.
Also, this ride which I hoped would help my rehabilitation is giving me new insight into living with ABI (acquired brain injury). This new insight is based on my own ‘detective’ work and then reinforced by a scientific analysis of the different responses my riding buddy observes. (She told me that I was providing her with a very interesting case study.)
The harder the learning, the more exciting the outcomes. It is definitely rewarding.
It’s been two weeks of the tour and last weekend Jane left the tour to visit a friend in Edmonton. While she had signed on as kitchen help, which everyone has benefited from, the more significant part is that she has been here to see me through the first two weeks of the ride.
What a blessing it has been sharing these two weeks with her. She’s helped to keep me on track when the ride became too challenging. She’s made sure I had things ready and organized on the mornings when I wasn’t in the space to pull things together. She made sure I got supper when I overslept my 2 hour post-ride recovery nap.
Jane is leaving the tour knowing that there are other riders who are looking out for me. Several riders have offered their help. All I need to do is ask. It would do me well to ask Andrew or Stuart to make sure I don’t over sleep in the afternoon and miss supper. It would do me well to not be hesitant to ask for help with other needs, because failure to do that would come at my expense.
It’s become very clear to me, when I see the offers of support that I’m not alone in wanting to have a successful ride. Fellow riders are determined to help me have a successful ride.
In looking back, I realize I would not have managed much past the third day of the ride if it wasn’t for the support I have received from a number of people. I am still dumbfounded to end up with a riding buddy who is not only a brain injury specialist but had been assigned as a member of my Service Team. As members of a Service Team we have devotion and sharing time with 6 or 7 people (depending on which week of the tour one looks at the list.) There is only one word for that, providence.
With Jane taking a break from the tour I know I will continue to receive the support I need. And for Jane it is reassuring to know I have caring and supportive people around me.
Helpers, helping the helpers raise awareness for a cause that aims to help people to End The Cycle of Poverty.
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.
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.
The 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.
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.
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.
Every time I’m ready to share a post I pause and have second thoughts about hitting the ‘publish’ button. The hesitation comes from a fleeting thought that I’m still on the same topic, ‘living with ABI’. The notion that haunts me is ‘how about a new topic.’
What makes me ‘unpause’ and share once again is remembering those who tell me I’ve helped them understand something about themselves. What seems mundane to me, because I live it every day, offers some enlightenment to someone else. Even though readers let me know, that pause still haunts me.
Brain Fatigue is _______ ?
What extends the pause a bit longer are the times when I’m experiencing difficult days. For me a difficult day is experiencing a loss of energy, usually in the form of brain fatigue. That’s what I’m experiencing this week. I call it brain fatigue because I’m not able to describe what is really going on. I experience a build up of pressure in my head. I don’t feel fully alert. I feel a level of anxiety that lacks a focus. This is a partial explanation. The fatigue is a manifestation of other processes in the brain that are taking a back seat.
As part of the brain fatigue I notice a setback in my ability to remember. I find myself once again searching for the right word – usually it’s the nouns that go missing in action, or innocently show up late. I once again find myself forgetting what I set out to do, losing my train of thought, losing focus partway through someone sharing a thought or experience – appearing rude and yes, feeling somewhat annoyed with myself.
Part of the brain fatigue is that it puts me at risk of nightmares. Impressionable events that happen during the day have a likelihood of invading my sleep and forming the background to a story that I would prefer to extricate myself from. The brain fatigue adds a complicating factor of losing my ability to distinguish between reality and dream. So I’m totally unaware that there’s an exit button – it should be labeled “Nightmare exit”.
As part of the brain fatigue my physical agility experiences a set back as well. Walking once again becomes more challenging – keeping my balance on uneven terrain becomes unpleasant, before starting down a set of stairs I hesitate, making sure I’m properly oriented. Loss of agility somehow translates into being unable to relax my body. Getting proper sleep goes out the window because I’m not able to relax – each night being only a partial benefit, then waking up in the morning feeling like I’ve completed a marathon – though sometimes I’ve only slept long enough to have run a partial marathon.
Managing to get a two hour sleep (can’t really call it a nap) later in the day is helpful though it means finding the initiative to navigate the groggy re-emergence from sleep. Finding my way to a reasonable semblance of consciousness can feel like moving through a maze. Doing it twice in one day doesn’t lead to a greater level of familiarity because each time the maze has a few new turns and switchbacks.
After a couple days of brain fatigue a combination of frustration and disappointment begins to set in. This makes me inclined to withdraw and shut out much of the world – a smaller world feels more comfortable. While a smaller world has greater appeal my experience prompts me to look in the opposite direction. So I tenuously venture out.
Today, I chose to spend a couple hours with my four year old grandson. When I arrived he first sat with me as we tackled a crossword puzzle he had started. He was excited to eventually have figured out a dozen clues and filled them in. This was followed by a couple games of chess. Then he very much wanted to play Stratego (TM) and very pleased with himself when he won. What wore me down was helping him design and build a layout with his wooden train track.
Spending time with him like this is both very motivating while also physically draining. His eagerness to do and learn propels me beyond my immediate condition and share in his sense of wonder and excitement. When I told my grandson I was getting tired he helpfully suggested that I read him a book. After he chose a book he changed his mind and offered to read it to me. After reading it twice he went on to discuss some of his reading exploits.
Meanwhile the recurrence of mental fatigue keeps me from doing some of the things I want to do. The maintenance items that beg my attention continue to wait. Some of the repairs which would have been easy to do pre-ABI are much harder to plan and complete.
Hopefully I’ll get a good night’s sleep in the next day or two. That will be a signal that my brain fatigue is subsiding. At the same time, proper sleep is key to minimizing the brain fatigue. It becomes a ‘Catch 22’ situation; I need the sleep to clear the brain fatigue, but the brain fatigue needs to clear so I can get some good sleep.
One activity that seems to help me reduce the brain fatigue is cycling. It’s repetitive and things happen slowly – much slower than driving a car. While it’s repetitive, it’s not a boring activity. The scenery changes and I’m moving at a pace that enables me to see things that are just a blur when I’m traveling by car. At this time of the year I’ve been able to scout out some wild grapes that have sized up nicely or spotted some abandoned trees with apples begging to be picked.
Cycling, or an activity like that, involves using all my muscle groups. Walking would accomplish the same but I prefer the scenery to change a bit faster. By exercising my muscles it makes it easier to relax when I lie down. The beauty of cycling is that I can make it as easy or as strenuous as I like. Running is not an option as the jarring motion of each step causes a headache to surface in short order.
In working with my brain coach, the goal is to avoid sensory overload which easily leads to brain fatigue. I’ve been coached to become my own detective in recognizing which activities contribute to sensory overload. What puzzles me is that I’ve been unable to determine the cause of my most recent encounter with brain fatigue. And so the detective work continues. And so the training with my brain coach continues.Intriguing and a blessing.
As principal for 11 years at a small Christian school I had the opportunity to bring in a student named Marshall. I had been given periodic glimpses of his life, elementary school and high school. Marshall has cerebral palsy and therefore has very limited mobility and is unable to use his voice. The school I was in did not have the facilities or the financial resources to accommodate Marshal’s needs when he was old enough to enter kindergarten. As a school we could not offer him the opportunities, gifts that he was able to develop elsewhere.
In November 2012 I made arrangements to bring Marshall in to speak with the students. On this particular Monday morning, Marshall shared a captivating message of hope.
Here is an excerpt of what I shared with the school community in the newsletter that was distributed later that same day…
Students … were mesmerized by a presentation given by a student who lives with cerebral palsy. Marshall shared not his disability, but rather his abilities. Despite living with the physically debilitating effects of cerebral palsy Marshal was able to give students a glimpse of his life.
Students had an opportunity to see what life is like when one has challenges moving around. They learned about situations that happen around town when one is not able to speak.
Through conversation with Marshall the students came to a profound appreciation of not only his challenges but also his incredible abilities and determination. Students watched a couple of superbly designed and executed videos that Marshall had developed giving others glimpses of his life. Students were dumbfounded to hear from him that it takes about a month to create a video.
Marshall is able to compose by using a device that scans the alphabet. He selects one letter at a time with a control that he manipulates by moving his head. Students experienced the time consuming nature of using this device during the question and answer time. Students would ask a question and then wait as Marshall formulated an answer one letter at time. The speech synthesizer would then read the response.
At the time I was struck by the quiet patience with which the students waited during the long pauses, at times for two minutes, as Marshall composed his responses.
Students learned that one day Marshall asked is parents to no longer pray for him to be healed from his cerebral palsy. He believed that if he was healed from cerebral palsy he would no longer be the same person. He believes that God created him as he is. He believes that in his cerebral palsy God has a purpose for him.
To quote from last week’s editorial written in anticipation of Marshall’s visit: “… so that God’s power might be seen at work in him.” John 9:3b
There was no doubt in anyone’s mind, as the presentation unfolded and as Marshall shared with the students that God’s power clearly is seen at work in him.
I continue to struggle with ABi and the changes that has meant for me. I still identify more closely and prefer the ways in which my pre-life enabled me to contribute to my community and allow me to realize my own goals and aspirations. Given a choice I would go back to my pre-life.
Here was Marshall, living with a diagnosis that put many more constraints on him that I could ever imagine. Yet given the choice he did not want to live in a different body. Given a choice he wants to keep his “pre-life”. For Marshall, life with cerebral palsy is part of his identity. This is how God created him.
Despite regularly being reminded of my limitations I am able to move forward with hope:
“For I know the plans I have for you,” declares the Lord,