The Paradox of Being Alone

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Wilderness cabin

So often I prefer to be alone but I don’t want to feel left out. This conundrum is one of the challenges of living with ABI (Acquire Brain Injury), though probably not limited to those who live with ABI.

Living with ABI can become a very isolating way to live. By that I mean, saying no, or passing on opportunities to participate in activities with others when I realize my sensory loading is reaching a point where I add to it at my peril.

The Paradox is real

When I engage in prolonged physical activities, such as cycling for a three to five hour block I  know I am committing to a recovery routine that I should not ignore. That means that as much I want to join in I will have to forego activities immediately following my vigorous activity.

When I am engaged in a discussion with a half dozen people I know my internal timer is counting down. As I am busy listening, reading body language, assessing people’s tone of voice, formulating responses to what I’m hearing, finding a socially appropriate way to interject, my neural fatigue is rapidly building. Even if I find the discussion very engaging at a certain point the internal timer runs out. I want to stay with the discussion but at the same time I want a quiet place to regroup.

When I’m at a music concert it’s does my heart good to take in the music, the lyrics and the energy of the venue. The music can be totally captivating, bringing back wonderful memories or create a memorable new experience. At the same time I know that at some point, maybe 30 or 45 minutes, and sometimes much sooner I will reach a tipping point. The captivating music will suddenly become a memorable failure, a start of a slow recovery in which I crave solitude while missing the company of family and friends.

When I am volunteering at the nature center close to home I need to remain self aware. I had only worked for about three hours but was totally exhausted. Being introduced to the project on my arrival was neurologically challenging because of my lack of mental flexibility. Sizing up the project for the day, coordinating with two other people, and doing something unfamiliar all contributed significantly to my sensory loading. While I enjoyed doing the project and wanted to see it completed, after three hours I was longing to get out of there and find a quiet place.

Planning Ahead

This week I have the opportunity to address a room full of teachers. I have offered to  share my own experiences of living with ABI, living as a neurologically atypical person in order to advocate for neurologically diverse students hoping that more teachers will develop a sensitivity for their needs.

The paradox of wanting my own space yet feeling compelled to share is staring me in the face. I am not sure how to prepare, to avoid sensory overload while doing an hour and a half presentation in a room full of people.

I know I need to ensure that my sensory loading is at a low level at the start of the presentation. That means I need to watch what types of activities I choose to do in the two days leading up to the presentation. Taking in an extra bike ride or two would be helpful. Engaging in socially or cognitively demanding activities of any kind needs to be kept to a minimum.

I know I need to ensure that my sensory loading is at a low level. I hope that booking a motel and arriving a day ahead of time will give me time to shed the sensory loading of driving in a car. Or maybe I should take the extra day to cycle the 160 km to the event.

Presenting

In order to manage my sensory loading while addressing a room full of teachers I need to be mindful of the structure of the presentation. While I would normally consider it conducive to allow for questions during the presentation, I am aware of the extra demands that will place on me. With my problem solving skills being severely compromised, fielding questions would be counter productive.

In order to manage my sensory loading it’s important to manage my level of stress and anxiety. Most people experience a measure of anxiety when addressing a room full of professionals, or non-professionals for that matter. I have conscripted a co-presenter who is scheduled to do part of the presentation. In addition to giving me a break when she presents she will be available to back fill what I am not able to complete.

Summary

The paradox of being alone colours much of what I do. At the same time I make a point of pushing forward, setting goals so that I don’t end up feeling that I’m living in isolation.

To resolve the paradox of being alone, my aim is to avoid isolation, by seeking solitude. Finding activities and finding places that refresh my being, that helps me manage my neural fatigue, that is my idea of a place of solitude.

When I am able to experience a measure of solitude on a regular basis, that gives me the energy and endurance to reach out, to share and not slip into a place of isolation. It’s not an easy balance to achieve. It requires increased self awareness, an understanding of my limitations and setting worthy goals for how I want to participate in my community.

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Post cycling reflections

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Portugal Cove, NL

This past summer I was on the road for 70 days. Starting on June 26 I was riding six days on, one day off. The 60 days of cycling gradually created a rhythm of it’s own.

The organized part

Initially the challenge of meeting the tour schedule, packing camp in the morning, getting breakfast, making lunch and gathering snacks for on the road was too challenging. It was the first time in over two years that I was on a rigorous schedule. Not only was I on a tight schedule but each step was critical for me to be prepared and equipped to ride for the day.

Eventually I more or less mastered daily hurdle of the rigorous morning routine. I was glad that getting accustomed to new routines was not impossible despite having difficulty with adjusting to new situations.

After the organized tour

Once I had completed the nine weeks with the organized tour I continued to cycle through one more province with two other cyclists. I wanted to include all ten provinces in my summer of 2017 ride. (I’ll have to do something about the missing three territories. But that’s for another day.)

Completing the supported tour and cycling with only two other riders made things much easier for me. I hadn’t realized how much my sensory loading was impacted each day simply by having 80 or so other people around me in camp and on the road.

The extra week of cycling Newfoundland had a negligible affect on my sensory loading. Riding with two other cyclists and having two support people meant there were fewer surprises and disruptions to my day. A more predictable day meant I needed minimal time to recover. This gave me more energy during the last part of each day.

The exception to experiencing reduced sensory loading was when we spent a day being shown around St. John’s. By mid afternoon I realized I needed to temper my activity level. By late afternoon I knew I needed to bow out. Pushing myself to a point were I would need a day or more to recover was not a good way to begin my trip back home.

Amazingly, my 16 hour ferry crossing of the Gulf of St. Lawrence went very well. That was despite having the ferry being battered by waves up to 10 meters high during most of the crossing. I experienced no noticeable sensory loading from that trip. In fact I slept quite soundly for most of the crossing.

Coming home

I had managed a summer long routine of being on a schedule and I had gradually fared better as the summer progressed. I was looking forward to a more relaxed schedule that comes with being at home.

With a more relaxed schedule of being at home I would be better able to manage my sensory loading. I didn’t need to push forward each morning to get cycling.

Unfortunately, a relaxed schedule after getting home didn’t happen. Very soon I was having to monitor myself more closely than I expected. I had hoped that my tolerance for sensory loading would improved over the summer.

Once I got home, I had left behind the simple life of cycling. I had left behind the simple life of doing one focused activity each day. All the routines that made up each day had one single purpose, support the bike riding.

Once I got home life became much more complex. I’m back home. That means there are bills to look after, there’s the yard work, there’s family to visit and more. Some things had been put off for the summer. Being home brought with it the full range of responsibilities.

One noticeable challenge I was once again reminded of is driving and riding in a car. A whole summer in which I probably covered less than 100 km in a car, while cycling over 7000 km. Once again I need to be mindful of the fatigue and nausea that come with riding in a car.

While my physical endurance has improved over the summer, I will continue to monitor the various activities that add significantly to my sensory loading. What I am grateful for is realizing that I can take somewhat of a holiday from having to manage my sensory loading. It’s not a holiday from work, but nevertheless, a necessary holiday that I need from time to time.

With the family gone to a music festival in town, I will head over there shortly on my own. I will cycle down there. I will like need to leave after about a half hour. I will enjoy the bit of time my brain can endure. I will value the memory of being there albeit only for a short time. When I’ve reached my limit I’ll cycle the 25 km back home.

Escape Plan

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Ready to roll – new drive train, accessories attached

In my recent session with my OT we spent over an hour developing an escape plan. While I have looked at many aspects in preparing for a successful Sea to Sea trek across Canada, I had not thought about developing an escape plan. Why? Well I was thinking in terms of success, not planning for failure.

I know from experience, that with my ABI, effective problem solving is a real challenge. Effective problem solving when I most need it, when I am in a situation in which I am dealing with severe sensory overload, will most certainly fail me. In failing me, it will likely create embarrassment for me, put extra demands on other people, result in poor decisions, in short it will likely make matters worse.

Get me out of here

The challenge of starting the trip so far away from home is that I can’t just quit after a difficult week or two and get a quick ride home. So, I have worked through a plan of how to exit the Sea to Sea tour ‘gracefully’ should it be necessary. I have settled on the likely exit points: Calgary, Regina, Winnipeg, Michigan, Owen Sound, Ottawa, Charlottetown. Each possible exit point comes with certain supports to minimize the potential challenges.

After developing the various exit points it gave me a sense of assurance. It took away the fear or anxiety of possibly creating a crisis should I find it too difficult to continue. With my fears reduced that is one less factor to weigh me down and in turn give me more energy to channel in a positive way – turning my pedals to keep me moving.

How do I know how I’m doing

In order to not end up exiting prematurely or at all, I need to know how I’m doing. Failing to properly gauge myself will result in being blindsided. With six days cycling and one day rest for each of the 10 weeks I need to be mindful of maintaining my reserves.

What to look for:

  • if I experience vertigo at the end of a ride or at rest stop I know I need to reduce my pace.
  • if I experience fatigue on waking, ride at a reduced pace that whole day. The thrill of biking once I get moving can falsely mask the fatigue and in turn show up in the form of greater fatigue the next morning.
  • if I am not sleeping well I need to reduce my pace. With too much physical demands it becomes harder to relax and sleep properly.
  • if I experience an increase in emotional loading, it will signal that I’m am not able to recover from the physical demands of the day or I need to curb some of the additional activities that could be causing the sensory overload.

Strategies for avoiding ‘trouble’

Even though I have done a four day ‘warm up’ bike trip, I need to be prepared for the unexpected. While I am aware of some of the activities that contribute to my sensory loading, there will be new activities which I need to be mindful of. For that reason I need to re-evaluate on a daily basis.

There are some simple strategies that I have agreed on that will hopefully stand me in good stead. I will schedule a nap as soon as I get into camp each day. From experience I know that after a physically strenuous day, I will likely be restless the first part of the night before sleeping better the second half. So it would make sense that a pre-sleep session should help make the whole night restful.

Riding in a large group can create a greater sense of camaraderie, but experience tells me that it will add significantly to my sensory loading putting me at risk of sensory overload. So, riding with no more than four cyclists would be advisable.

I’m going to have to see about the weekend celebrations as the tour is scheduled to hit a major centre each weekend to connect with supporters and donors. Participating in that might be a non-starter.

Despite the many contingencies that I have looked at, I find that cycling helps to dissipate much of the sensory loading that builds up as the day progresses. It seems like the physical, rhythmic action of cycling, along with the slower and simpler way of seeing the countryside provides relief and healing.

After analyzing all the different things that could go wrong, I actually found it to be a positive and a reassuring activity.

I have found some quotes about failure that are appropriate to different aspect of my upcoming bike trek:

“Failure isn’t fatal, but failure to change might be” – John Wooden

“Failing to plan is planning to fail.” – Winston Churchill

 

Intriguing Four Days

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Minimum Bicycle Safety Margin

It’s been an intriguing four days. Rather than driving the four hour trip to visit my daughter I decided to cycle to her house. A four hour drive has it’s challenges but so does a 4 day cycling trip.

Challenge #1

My main challenge when I am driving is managing the sensory loading, some of which comes from an underlying hyper vigilance, a side effect from the car accident that caused my ABI. I am still trying to reduce the effects of post traumatic symptomology that lingers following the collision. The hourly breaks helps reduce some of the sensory loading that occurs from simply being in a car.

In the four days I cycled I did not experience sensory loading to a level that it would interfere with my normal functioning. On the second morning I intentionally cycled through down town Toronto at the height of rush hour. I proceeded down Dundas Ave which has a marked bike lane. That allowed me to move much quicker than the cars that were crawling across town. I was aware of the need to watch for cars coming out of side streets, watch for turning vehicles at each intersection and be aware of many other cyclists that were either overtaking me or as I was passing them. At the same time that I’m focusing on the traffic, I’m taking in the honking of car horns, the noise of trucks, police sirens. Add to that the smells of sewage, exhaust fumes, bakery smells and other unidentifiable smells in a quickly changing smorgasbord of odours.

When I reflected back on the 15 km ride through the Toronto rush hour I noticed no lingering sensory loading at the end of the day. Had I ridden in or driven a car the accumulated effect would have required several hours or a day to clear my brain.

What seems to make cycling different? I’m not really sure. As part of my training by my occupational therapist to become my own detective, I have some possible theories:

  1. When I’m cycling I am moving through traffic in a different way then driving a car. I am not dealing with the possible errors that could result from something going wrong with on-coming traffic as I am way off to the right side of the road.
  2. I am moving slower than in a car or in the case of rush hour traffic, not dealing with the stop and go matter, so the neurological demands are less. I don’t need to process sensory input at nearly the speed on a bike that I need to while driving a car.
  3. I am cycling, which is a highly physical and a highly repetitive activity. Yes, I have to shift gears, and pay attention to various factors in my environment, but it seems like the physical part helps dissipate the negative effects of the accumulation of sensory impressions. Driving a car involves very minimal physical activity – moving one’s foot between gas pedal and brake. As such there is an accumulation of stresses that will continue to build till I step out of the car and do something physical. Taking a walk isn’t very strenuous but it’s repetitive and 20 minutes or so of that makes enough of a difference to continue the trip.

Challenge #2

There are times and situations in which the emotional sensory loading brings me to a point where it interferes with my normal functioning. The day before I started the trip I had just been through an experience of extreme emotional loading which left me totally incapacitated for over a half hour. Such an experience would often take 2 days and sometimes longer to clear my system. As I was biking along on the first day I had two momentary relapses that reminded me that my emotional loading was still a concern.

The one relapse happened when I stopped in to see a friend of mine. I was explaining to him that I would be cycling across Canada next month. I was overcome when I shared with him what my occupational therapist has shared with me a week earlier. She told me that when she started working with me 18 months ago, she had done an extensive assessment, she did not think my condition would improve enough to be able to bike across Canada. She was overjoyed that I had proven her wrong.

By the second day and the following days I experienced no relapse with my emotional sensory loading. I can only attribute that to the repetitive, physical workout. While being repetitive, cycling is never boring. How can it be when you are seeing the countryside or the cityscape at pace that brings out many wonderful details and surprises.

Challenge #3

Conversing with more than one or two other people at a time will put me into sensory overload in about 15 minutes and often sooner. Each night, when I came to my lodging place I visited with two people. It was a chance to share experiences and insight of the day. After completing the 4 day ride I was visiting with my daughter. Shortly after I arrived a few more people joined in. I was able to enjoy being in a group of 6 people for over two hours and later in the day with a group of 9 people for about an hour.

I won’t jump to any conclusions too quickly as there are various factors to consider. There are many different factors, many subtle, that affects how well I can survive in a group. Some things that I consider are:

  1. The nature of the topic and how it engages me has some bearing.
  2. The type of personalities within the  group. If someone is boisterous and dominating that will overload me quite quickly.
  3. The rhythm of the conversation has a bearing. By that I mean the ease with which I am able to interject into the conversation or how in tune others in the group are to noticing a quieter person who is trying to share.
  4. The coherence of the conversation. The more often the conversations breaks up into subgroups and then reemerges again has a noticeable wearing effect.

Challenge #4

When I first started biking after my ABI, I would startle every time a car or truck would come up from behind me and pass me. It was annoying and difficult to deal with because even with a rear view mirror when I could see the approaching vehicle I would be startled by the ‘whoosh’ as the vehicle passed. Thankfully that happens very rarely.

When I am cycling I regularly keep an eye on what is happening behind me. When I see a car approaching I check to see whether they are moving over, an indication that the driver has seen me. Once in awhile someone passes closer than the law allows. When that happens it leaves me slightly annoyed but it doesn’t startle me.

I don’t know why keeping an eye on traffic behind me leaves me feeling okay, while driving a car and the hyper vigilance that it induces leave me worn out.

I have taken measures to ensure a greater margin of safety as vehicles pass me. I wear a bright orange safety vest at all times. When the sky is overcast I use a flashing LED light that can be seen from a kilometer away. I put the light on flashing mode figuring that an inattentive driver will notice that much easier than a constant red light.

Conclusion

While the main motivation for my four day bike ride was training for a Pacific Ocean to Atlantic Ocean bike ride, it also gave me some insights into traveling by a different mode and how that impacts my ABI. Once I arrived at my destination I slept for 10 hours and then twice in the same day a 2 hour nap. Recuperating from physical fatigue is a much more enjoyable experience than recuperating from neurological fatigue. The sense of accomplishment without having incurred neuro fatigue is very satisfying and a real encouragement.

In the past four days I put myself through a more rigourous workout than the Sea to Sea cycling will be. This workout gave me insight into one part of the challenge I will be dealing with this summer. Cycling this summer with a group of about 100 people will likely give me new insights into dealing with other aspects of my ABI challenges.

And so the detective work and the detective training continues.

Broke all the Rules

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No planning – Just opportunities motivated by instinct

I am writing this in the wee hours of the morning because I am dealing with several side effects of attending an event that set me back. It’s not that I went into the event unaware and was blindsided. I wasn’t sure what to expect but I knew I would not emerge unscathed.

The fact that I am writing this when I would otherwise be sound asleep speaks to one of the side effects. For the past 3 weeks or more, as I have been doing some serious physical training, I have had no interrupted sleep. That is by far the longest stretch in over two years of finding quality sleep.

The past few hours have been different. My dreams have been wild. My dreams seemed just a bit too real, not being able to discern dream from reality. My dreams have been unsettling and upsetting. And right now I am wide awake because I can’t get back to sleep.

What got me into this

For one day I had put aside the intentional planning that my occupational therapist has been drilling into me for the past year. I did not work out a back up plan, unless retreating to a quiet place qualifies as a back up plan.

And yet, as I look back on the evening, I realize I have developed some habits that protect me from sensory overload and succumbing to extreme neural fatigue. I know to seat myself in an auditorium so that I can make an inconspicuous exit. Exiting from a venue that seems to cause disruption, perceived or real, adds significantly to my sensory loading and therefore my recovery time.

My decision to attend the event was a calculated decision based on an anticipated Cost/Benefit consideration. That’s why I am not surprised to come away from the event feeling content despite having my day, or rather night, significantly interrupted. I chose to attend a 50th anniversary celebration of an institution that I have been well connected with for 30 or more years. The sense of contentment in the middle of dealing with disruption comes from the affirmations that I serendipitously received in the course of the evening. At the same time, the sense of contentment comes from hearing from different people and how they are doing.

Modifications I find helpful

Large groups wear me done. With larger groups the negative effect is exponentially greater. The level of noise is a minor factor yet becomes significant over the course of a couple hours. More significant is the processing of too many sensory impressions in a short block of time; following conversations, reading body language, interpreting tone of voice, looking for segways into a conversation, and managing the emotions of the moment.

By seeking out quieter places, places with fewer people, I found myself engaged in one-on-one conversations and avoiding the complexity of small groups. By keeping myself visible in the quieter areas, people I know and have worked with ended up finding me and so I didn’t feel isolated.

Being in a banquet hall with 6 people at my table and another 300 guests in the hall is quickly overwhelming. I intentionally engaged with only the two guests on either side of me rather than the whole group at my table. The second modification that I made was to arrange with one of the guests at my table to text me at certain junctures in the event. So after some initial introductions I left the hall for awhile and re-emerged from time to time to catch the key elements of the evening.

Managing expectations

A big part of managing my ABI symptoms has to do with managing my expectations when I attend an event that I know will likely set me back. That’s where the Cost/Benefit plays a significant role. It might seem a bit selfish, but if the event won’t give me a boost then the negative after effects become a burden, threatening to cause a downward spiral that is clearly counter productive.

Blessings

20170509_101659The event has left me with many wonderful memories. By keeping my expectations low, yet allowing myself a certain level of vulnerability, wonderful experiences did emerge. I can recount many wonderful moments but let me share a couple of notables.

I had one mother of a former student share a number of experiences with me. The one she was most eager to share was how her daughter missed the whole first week of school. She was too nervous to bring herself to accept me as her teacher. In the end she decided that I had been her most inspiring teacher. I recounted with the mother her daughter’s strengths (from 15 years ago) and was not surprised to hear what activities she is presently doing.

After sharing briefly with one former colleague he offered to pray over me, to request healing. To me it spoke to his strength of character and his sense of ministry. And so there were a variety of different kinds of sharing throughout the evening that left me encouraged, hopeful and with a sense of being surrounded by people who care and seek to be supportive.

It might take a day or two to recover but after an event like last night it is not a discouraging or frustrating walk. The power of prayer, the power of living in community with arms reaching out, takes down the walls of isolation that an acquired brain injury easily creates.

And now, I’m ready to sleep some more. I need to be ready to do a short presentation in the morning – part of measured planning albeit, this one has a back up plan.