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 theĀ  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.

Finding a Gentler Way

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In the shade of a fieldstone wall

Conversing with a half dozen people is more wearing

Than biking 20 km in traffic

Participating in a worship service is more demanding

Than biking 30 km dodging rain showers

Walking into a store for a quick errand can be more frustrating

Than biking 40 km into a head wind

Listening to live music for half an hour requires more recuperation

Than biking 50 km through hilly country side

Driving for 4 hours will affect my balance more

Than biking for 60 km on a chilly day

 

Some activities have a way of causing neuro fatigue

While cycling rejuvenates the whole person

 

The physical exertion

The rhythmic movement

The outdoor ambience

Nature’s symphony;

The wind in the trees,

The call of the cardinal

The chirping of crickets

 

Sounds that respond to each other

Sounds that sidle up to you

Sounds that heal,

Sounds that sooth the senses

Sounds that lift one’s spirits

Being neurologically atypical, things don’t add up in a way that makes sense to others. While I am able to do certain activities with ease and experience satisfaction, there are plenty of activities that leave me challenged.

 

Over Compensating is my Insurance

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Every hill a new vista

In planning and preparing for my first multi-day (14 days) cycling event 4 years ago I did not have much time to train. As a result I decided that doing a 15 km (10 mile) ride 5 mornings a week would have to suffice for ‘training’. Now I should mention that the 15 km included about 120 meters of climbing and I gave it my all. Eventually that meant I could complete the 15 km in under 30 minutes. That give me a good aerobic workout and help build some strength in my legs.

Here I am 4 years later and once again preparing for a multi-day (70 day) cycling event. This time I have more time to do my training. No excuse this time for not having enough time to do the training.

It’s not my extra time that is making me diligent about my training. It’s that I am not sure what my endurance will be like this time. I don’t want my injuries to be a hindrance to my participation. Since my recovery and adjustment to living with ABI creates a big unknown factor, I feel compelled to over compensate. My diligence in training is focused on eliminating as many possible snags as I can.

So I make sure I can handle the distance – doing as many long distance rides as I can. Four years ago my longest pre-event ride was about 50 km.

So I make sure I can handle the climbing – I have taken on a Mt. Everest Challenge of climbing 8848 meters in one month of cycling. Last time I just didn’t check it out.

I have had some people wonder how I could possibly do a cross Canada (6700 km) ride while dealing with ABI. Fair question. While there are physical side effects to living with ABI, working on my physical endurance helps deal with other factors related to my ABI.

Cycling is a relaxed way to enjoy the countryside. Cycling is a way to live life at a relaxed pace. It means decisions that need to be made have time. The activity is not neurologically demanding. Recently while riding, I was doing fine, things were relaxed, the traffic decisions were fine. Then I stopped to pick up some granola bars at a grocery store. By the time I left the store I had encountered difficulties with 2 cashiers and in an attempt to moderate my frustration went back to the display shelf twice, and had the manager come over to see if she could be of help. I hope I had not been too irate with the cashiers, but I told the manager that the pricing of the products was just too confusing. The tags did not clearly show which products were on sale – or let me say I found it confusing and quickly overwhelming.

In reflecting on the situation later, a different manager might have has less patience for my confusion and possibly thrown me out of the store. I decided it’s easier to bike 50 or 80 km then to buy some granola bars in a busy grocery store with too many products on display and double and triple pricing information. (Regular price. Sale price for 1 item. Sale price for 3 items.)

When I started outdoor part of my training lately, the real significant of my ABI and physical effort started to become noticeable. On a regular ride I felt fine. On the longer and more strenuous rides I would arrive back at home and feel light headed. As I continued with my training the light headed experiences became less noticeable. My most recent ride of 140 km in one day left me with no side effects of being light headed. I have decided to do a 4 day ride in a couple of weeks to see if I need to make any adjustment before I leave for Vancouver to begin my cross Canada ride.

I chose to do a 4 day ride as part of a pattern I have developed while working with an OT. Each time I would undertake an activity she would ask me if it was the first time doing it since my brain injury. As a result I have camped in the back yard for a couple of nights before leaving home for a camping trip so I could make adjustments before doing the real thing.

The over compensating is partly due to not necessarily being able to adjust on the fly, something that I wouldn’t have thought twice about pre-ABI.

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.

The Joy of being Dead Tired

20170503_170822The joy of being dead tired is somewhat akin to the blessing of experiencing pain. (Chronic pain is a much different matter.) Pain is a gauge that the activity one is doing is harming you. Pain is the gauge to alert you that you need to stop to prevent further injury.

Being dead tired is a clear signal that you need to stop what you are doing. Part of being dead tired is realizing you have just put your body through a strenuous activity and have prevailed.

Inducing Physical Fatigue

I decided against attending the Good Friday service since the numerous songs would rather quickly contribute to my neural fatigue. The down side of that is having to make an early exit from the service. This always brings with it a measure of disappointment as it once again highlights one of my ABI limitations.

My alternative was to go for a leisurely bike ride. By leisurely I am referring to my pace, not the distance. I chose a route with quite a varied terrain. The route involved some hills that required me to use my lowest gear (A 15% climb in places). The reward being some great down hill stretches in which I exceeded 60 km/hr (40 mph). Though going down hill at that speed does make me a bit nervous about the risk of a spill, road rash and other possible injuries.

As the two hour mark approached I had covered over 35 km, I was longing to get home and be done. At the same time, despite my physical fatigue I was feeling great. I was still able to push on without experiencing much discomfort. The best part about physical fatigue is that it comes with a wonderful reward – a blissful night of sleep.

Reducing Neurological Fatigue

In contrast to physical fatigue, experiencing neurological fatigue is difficult. Neurological fatigue interferes with sleep. Neurological fatigue leaves me feeling at loose ends, no motivation to do anything, unable to focus and therefore often at a loss as to how to address it. I have gradually figured out that doing something physical that is repetitive and not too demanding physically and cognitively very low key is the best option.

Recently when I was experiencing neurological fatigue, I was looking for a way to help alleviate it. I was away from home, so cycling wasn’t an option. Walking was somewhat helpful but I lacked the motivation to keep going. (With cycling, it’s the bike that keeps me going, whether it’s a slower or faster pace depends partly on the terrain.) I found a quiet place to relax, read a bit and did some writing. For two days I experienced no relief. Being in an unfamiliar place interfered with recovery.

It wasn’t till the day after I got home that I began to experience recovery. I had enough initiative to do some cycling. I headed out beginning with a very relaxed pace. As I ‘listened’ to my body I was gradually feeling the neural fatigue diminish. Gradually my pace increased. The quietness of a well tuned bike (a quiet bike is a happy bike) allowed me to take in the natural sounds around me. The sounds of birds, the wind in the trees, the chatter of squirrels, the occasional bark of a dog are all soothing sounds, sounds that seem to belong. The sounds serve as an introduction to what I can expect to see as I cycle along.

After cycling an hour or two I get home feeling physically fatigued. With the neural fatigue being noticeably diminished I soon find myself napping. The bliss of a good nap, the feeling of waking up relaxed and refreshed has no equal.

The Search for Healing Sleep

Most of my life I have been blessed with the ability to be able to lay down for a nap when I needed it, even when we had a house full of young children. With ABI it’s the neural fatigue that causes serious disruption to my sleep pattern, both night sleep or a mid day nap. Neural fatigue interferes with enabling one’s brain to slow down; unable to put active functions like problem solving, creative thoughts on hold.

Bringing one’s body back into balance makes physical fatigue a real blessing. Each time I experience success with physical fatigue, the activity that bring on physical fatigue becomes a motivation for countering the next episode of neural fatigue.

Being able to trade neural fatigue for physical fatigue is a much desired conversion experience.

Personal Planning

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Port Weller, Ontario

Being confronted with a brain injury did stop me in my tracks. At first I did not think it had. I seriously thought I could ‘beat’ it. Loss of cognizance of my ability and condition was one unacknowledged loss due to ABI.

While I initially fought it and hoped to push on, it quickly became apparent that pushing on was not happening. In the first few days I was working from my daily rhythm and momentum. As each new day dawned I found it increasingly more difficult to get myself ready and organized and out of the house. Eventually I was arriving at work after lunch time, thinking I would get a bit of work done yet that day. If it was that difficult to get to work it doesn’t take much imagination to realize how the work panned out.

Trying to carry on after a brain injury is like pushing with a rope. No matter how hard you try or what techniques you think you can invent, it’s just not possible.

I went from a 2 hour daily commute with 50 hour work weeks requiring long term planning and daily execution of tasks without giving it a second thought to struggling to get through a single day. I went from living with a long term outlook to living hour by hour and even failing at that.

Gradually I realized the importance of setting some personal goals. My short term goal of cycling received a blow a few months after my ABI. My participation in a ten day Rocky Mountain bike tour scheduled for 6 months after my injury would have to go ahead without me.

It was about a year after my injury that I started to formulate some new goals, one being a long term.. I started to put into place my determination to do more cycling. I wanted to bike across Canada.

Needless to say, enough people tried to dissuade me from going ahead with the plan. From an outsider’s perspective I can understand the concern. The concerns were coming from family and friends who had seen me struggle to get through each day. They had seen me walk out of events within 30 minutes. They had seen me absent myself from musicals and large group gatherings. All with a concern that my symptoms would be exacerbated and worsen my ABI condition.

One thing I’ve come to realize. Activities might exacerbate my symptoms but my symptoms do not affect my condition. The symptoms are just a picture of how I’m living with my condition. You could say my symptoms are the ‘colour’ of my body that day. The colour doesn’t damage anything. My OT had assured me that even when my symptoms related to sensory overload went into the extreme zone and persisted there was absolutely no way it would worsening my ABI condition.

The one thing that would affect my ABI condition is a re-injury. Another blow to the head or violent shake up (which can happen even with a helmet on) will worsen my condition.

I had the frightful experience of a re-injury a few month back. The blow to my head put me back to some of the early symptoms that confirmed my ABI diagnosis. All the current symptom were severely heightened. My headaches returned. My tolerance for vestibular loading was so bad that I could not tolerate the washboard effect of a gravel road. My energy level would be zapped within a half hour of doing something cognitive.

For those who have been following my blog, let me say that the symptoms of my re-injury cleared up in about 3 weeks.

At this time I am 3 months from starting my fully supported cycling trip across this continent. Achieving this goal, in the way I have defined success will help determine my next long term goal. In the process of achieving my goal I hope to become aware what new things my changing limitations and abilities will allow me to do.

My recent designation, having reached the 2 year mark since my injury, is that I am not able to perform any reasonable alternate occupation. By itself that would be devastating and discouraging. It sounds like someone telling me that I’ve reached the end of the road of making helpful contributions in my community. That designation seen in the context of personal long term goals doesn’t have the same negative effect. Rather it affirms that the support systems that are in place will continue to be there to support me as I strive to complete new goals.

Having ABI means my brain will continue to function neuro-atypically. Despite that, my overarching goal is to see my overall functioning continue to improve. Finding ways and means to be of help and service for others is both motivating and encouraging.