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

 

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Detective in Training

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Never mind how I ended up here. How do I get out?

Living life with ABI comes with many surprises and unexpected turns. That makes the outcome of many days very different from what I expect or want. It would be very helpful if my days could be more predictable and therefore be able to count on following through on commitments that i have made or would like to make.

There is a Chinese curse that says, “May you live in interesting times.” Unpredictable, unexpected, unmanageable are all descriptions that defy being able to follow through, unless I make contingencies. The contingencies planned into my day can make the difference between a successful day and a bad day. The contingency planning takes on a variety of forms.

Driving

The contingencies around driving can get quite involved. First of all, I schedule a break every hour. In addition I try to arrive an hour ahead so I have time to recuperate from the drive (or ride) if I’m expected to participate in an event. Recently I did a favour for my son, offering to pick up a furniture order for him at IKEA. I contacted him mid day after completing my own errands that I was fine to follow up with my offer. When I was 20 minutes from IKEA I realized my sensory loading was ramping dangerously fast due to neurological fatigue (a couple of unexpected factors had inserted itself into my day). When I got to IKEA I realized that I would not be able to make the long drive home. I contacted my son and explained I was at my limit. And so our back up plan kicked in. I met up with him so that he could drive most of the trip home.

Restaurants

The contingency planning for going to a restaurant involves very different factors. Depending on the size of the group or the busyness of the restaurant I have to make a few decisions. If we are with a large group or the restaurant is quite full, I will walk in, check the menu, let someone know what I would like to order and then leave the restaurant. Once the order arrives I will come back. Once the hectic activity around ordering is done, I am able to participate. This is where texting can be very handy.

If the restaurant is quiet, I will do my own ordering. However, when the waiter or waitress is rattling off the specials of the day I zone out – that’s too much information to process, remembering the different items, comparing the benefits etc. I am better off reading the menu because I can process the information at my own pace.

Large venues

The contingency planning for attending events is to have an ‘escape plan’ in case I need to leave the venue. I look for seating so that I can exit as inconspicuously as possible. For some events I end up exiting and returning several times. Sometimes I find I need to leave a venue within 5 or ten minutes. I return when I have recuperated a bit or when the activity changes.

My shortest time in a venue before making an unplanned exit was about10 seconds. I had slipped in with a friend just before the event was ready to start. Luckily we were able to grab the two remaining seats by the exit. As we took our seats, all 800 people stood up as the music began. With 800 voices, live music on stage and wonderful amplification the effect hit me like a proverbial brick wall. By the time I realized what had happened and had the where with all to head for the exit, about 10 or so seconds had lapsed. It took me over 10 minutes to recover from the initial effects of the sensory overload.

Making sense of it

While I plan for contingencies, I also need to learn from situations in which I experience sensory overload. At times two seemingly similar situations end up creating two very different outcomes. While to the untrained eye the situations can look identical, it takes a different level of awareness and observation to recognize the differences.

I recently had two seemingly identical experiences. I walked into church well before the worship service was to begin. The pianist was rehearsing and all seemed fine. I later concluded that the music and the extra 15 minutes helped me make the transition into the worship space.

Fast forward a few weeks later. Remembering the earlier experience, I decided to enter the church sanctuary extra early again. Once again there was piano music playing and a soloist rehearsing before the worship service. Within two minutes I realized I needed to get out. The reverberations within an almost empty room from the live music overloaded my senses. Disappointing but an eye opener at the same time.

Making sense of situations when one is living with ABI often requires having the keen sense of Sherlock Holmes to properly debrief the day. Then combine that with the foresight of a prognosticator in order to successfully plan a day. Those two activities have become a necessary part of an ABI life to varying degrees.

Nothing happens without a reason

I always start with the understanding that there is an explanation for each time I experience my limitations. If I properly consider all factors then it should not take me by surprise. It’s not just being aware of the sensory loading caused by the activities that day, but also the amount of sensory loading from the previous day or two. Having a good night’s sleep doesn’t reset my sensory loading ‘meter’ back to zero. The other factor to consider is the significant events I’m anticipating in the next few days.

Each session with my occupational therapist is like ‘writing’ another chapter in solving my personal ABI detective case. More importantly, each session I have with my OT is another lesson on being trained as a detective.

C3PO

You are approaching your resource limit (orange light flashing)

Halt all non-essential activities

If one ignores the above warnings then things deteriorate further

You have exceeded your resource safety buffer (red light flashing)

Non-essential systems are shutting down

Halt all activity! Halt all activity! Halt all activity (audible warning)

Failure to comply will result in a lengthy shutdown of numerous systems

Be advised that full functionality may not be restored for up to 4 days.

With a computer there is always the option of doing a cold reboot or to carry the analogy further, run a virus scan, malware scan or optimize the drive. And if all else fails, re-install the operating system.

But I am not a robot and so I do not have such obvious early warning signals. I am not a robot and so a cold reboot is not possible. That’s why I need to be mindful of what I am doing and how my body is responding, physically, neurologically and emotionally at all times. My body has about a dozen warning signs but I need to learn to recognize them more readily. The more mindful I am, the better I will be able to function. The contingencies need to be part of my schedule so I can respond to the signals my body is giving me.

The main consideration for any activity that I do is the Cost Benefit. Every activity contributes to sensory loading and puts me at risk of sensory overload. Each time I need to decide what value I put on the potential benefits.

Scary Decision

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I need a different kind of ‘training wheels’

My bucket list includes cycling across the continent. I hope to make this a reality in the summer of 2017 by signing on to Sea to Sea 2017. However, I am still learning to live with ABI  (acquired brain injury). For those who have followed my recent journey, I’ve had to learn a lot about what I can reasonably take on.  Still figuring out my limitations has made me question whether a 10 week bike tour across the continent is achievable or even advisable.

Ever since the summer of 2013 I had my heart set on cycling across the continent. That summer I cycled from Lake Michigan to Montreal, a distance of 1400 km. I completed 250 km of the distance by unicycle. The balance of the 1400 km were completed on two wheels. The sheer enjoyment and success of the two week trip made me dream of one day biking across the continent.

On a good day I have been dropping hints with my family of my dream. On not so good days the thought of committing to this event has me downright scared. And so I vacillated from day to day, from week to week.

Pre-training

You could say I started my training last spring. I could not bike five kilometers without getting side effects of my ABI. By reducing my pace to about half of my pre-ABI pace I could manage five kilometers. Soon I was edging my distance up by five more kilometers, then ten more kilometers. On a very good day I could manage twenty kilometers. A couple months back I completed several forty kilometer trips. Still a far cry from the 130 kilometers I would need to do to take on the Sea to Sea tour.

During the heat of the summer I limited my cycling to late afternoons and cloudy days. With more than forty days that exceeded 30 C (85F) there were many days I stayed off the bike.

It’s almost like going back to ‘training wheels’. Through careful planning and training advice from my ‘brain coach’ I should be able to participate.

Pro

The things that encourage me to go will hopefully win out. The tour provides SAG support so I will not be left stranded if I have a bad day. It being a supported tour I will not have to carry my own gear. My experience with the previous tour is one of support and encouragement.

Cycling is one of the ways I cope with my ABI symptoms. I bike to help to help reduce my sensory overload or reduce fatigue brought on by stress and cognitive demands. I trust that I will continue to increase my biking distance. It’s not a race so I need to find a comfortable cycling pace.

In thinking back on my two week tour of 2013, cycling is one way to live a simplified life. Each day consists of some variation of ‘eat, sleep, bike’. The occasional extras would include pitching in with some of the group tasks.

Con

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East of Kingston Ontario, August 2013

Aside from getting to the starting point of the tour, Vancouver, there are other concerns while on the tour. Will I be able to handle the heat? According to the Farmers Almanac the temperatures should be more moderate next summer. Will I be able to handle touring with a large group, large gatherings for breakfast and supper and the daily peleton meetings?

Deciders

I signed on to Sea to Sea 2017 this week. I have 7 months in which to see improvement in learning to live with ABI. I need to accept the real possibility that there might be days in which it will be best to not cycle. That will be the biggest challenge – convincing myself to stay off the bike if I’m not up to it for a day.

One part of my decision is clear. I will not do any part of the 2017 tour by unicycle. Unlike the summer of 2013, for the tour in 2017 I have no intention of doing part of it by unicycle. Living with ABI means I will have enough challenges to respond to and manage that I don’t need to create any artificial challenges. I will welcome the support I received in 2013, but this time for very different reasons.

At Risk of Over Planning

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600 ft cliffs at Blomidon Provincial Park, NS.

At Risk of Over Planning.

Not having been on a holiday since my ABI a year and a half ago prompted some questions.

Do I want to take a holiday? I kind of think so.

Should I take a holiday? Possibly.

Where to go? Find a place that’s worth the effort and not make me regret the likely side effects of my brain injury.

The common sense choice

What kind of holiday should it be? Bus excursion? Yes, that looks like it will fit the bill. Choose a destination and it’s all planned out. The details are all laid out, a predictable schedule. Minimal work in getting ready. Just need to decide what to put in my travel bag. Accommodations arranged with room service and restaurants booked ahead. A professional driver, just sit back and relax.

Oh wait. Taking a bus excursion means there will be many other people in close quarters. That means dealing with conversations all day, reading social cues, dealing with sensory loading of all sorts.  Since there’s a daily schedule I can’t ask the bus to pull over just because I’m experiencing sensory overload from the constant movement. The schedule means I need to be up each morning by a certain time. If I couldn’t get to sleep or my sleep was disrupted I would not be able to sleep late. Starting the day after a short night means I

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Sensory Overload makes both hard to do

haven’t cleared my sensory loading from the day before. I would most certainly start the day with a headache.  In short it would be a tough day or worse. The restaurants often are environments for creating sensory overload.  Being in a different place every day is cognitively demanding since familiarity and routines help to mitigate sensory overload.

The obvious and impressive first choice was on second thought guaranteed to be a catastrophic failure.

The intensive planning choice

I decided that yes, I very much want to take a holiday with the two of us. I never realized how much planning it would take to not have the holiday turn into a Punishing Experience. To prevent a repeat of a weekend away the holiday needed to be flexible, planned, slow, deliberate, low demands, options for quiet time, and more.

The OT (occupational therapist) worked with me over a five week period. Between planning the obvious and obediently carrying out the seemingly absurd requests, the plans gradually took shape. The preparation involved sleeping in the tent in the front yard for a couple nights. This would determine whether tenting was still a viable option with ABI. The first attempt to sleep in the tent was aborted. This would have meant disaster if we were already on the road. After making several adjustments I successfully managed two good nights in the tent.

We always thought we had camping well planned. The conversation fragment below had me wondering.

The OT asked, “Do you have a camping list of supplies, equipment etc?”

“Yes we have one,” I proudly told her, “We have a list that’s been fine tuned over the years.”

“Show me the list.”

“Okay,” I said pleased to show her the print out.

“Which things are you taking care of?”

“These,” I said, pointing to some of the items.

“I don’t see your name by those items.” “Do you need to buy anything on that list?”

“Yes.”

“Did you make a list?”

“Oh yes.”

“When do you plan buy the items?”

What I realized is that planning had to be much more detailed than pre-ABI. Not just a general plan that served as a general guide to doing things on the fly. Rather it had to be a plan with details like, who is going to do it, how is it going to be done and when is it going to be done. What the OT wanted to avoid was the last minute packing panic. That could be a significant setback before even starting our holiday.

The OT asked about many aspects of the planning. What day were we leaving? What time were we planning to pull out? How were we organizing the packing of food, cooking utensils, tent gear, cycling equipment, etc. When would all the camping gear and food be loaded? How many nights were we staying at the bed and breakfast place? Was a bed and breakfast better than a motel. How far did we plan to drive in one day? Were the bed and breakfast reservations flexible? Did we have the campground information written down – address, phone number, and directions? Did we have the route mapped out? What was our

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Personalized “Tour Bus” packed and ready

goal for the holiday? Did we have a backup plan if we were delayed due to not being able to drive four hours? Did I have my medication sorted for the trip? Was I planning to go to the Canada Day Parade the day before leaving? (Correctly implying that it would not be a good idea)

Needless to say, the questions felt like an interrogation. More to the point, I felt like it would be my fault if this trip did not go well if I couldn’t give a good answer for each of the questions posed.

The Trip

Being on the road was the hardest part of the trip, whether I drove or was the passenger. We limited the first day on the road to no more than three hours. After that we limited the drive to no more than four hours a day on the road. Some days four hours was too much. We found that a break every hour with a longer break at the two hour mark worked the best. The break served one main purpose. It was intended to minimize and hopefully shed some of the sensory loading. The break involved getting respite from the constant movement, walking around, and eating a snack or meal. Signals such as fatigue (even as a passenger), headache, nausea or double vision were indictors that we were on the road too long.

Highlight of the trip

Camping for four days at Blomidon Provincial Park in Nova Scotia was the most successful part of our holiday. Maybe it was the campsites at the top of the spectacular 600 ft cliffs, or maybe the fresh air off the Bay of Fundy. During our stay at the park I could do a full day of

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Awesome campsites at the top of the 600′ cliffs.

activities without experiencing any ABI symptoms. Our stay there involved hiking about 8 km a day, cycling, reading and rock hounding. I was very reluctant to leave the park. It was the first time in a year and a half that I felt ‘normal’. I went through four days in a row without experiencing reminders of my ABI. The only subtle reminder was the ten hours I slept each night to balance out the day time activities.

The day following our stay at Blomidon Provincial Park stands in sharp contrast to the previous four days. We drove to PEI, a trip of about 4 hours. It took me two and a half days to recover from the drive. In PEI we were in a house with four people who I should mention were very pleasant company. However, being around three other people and the more complex social dynamics that come with larger groups likely slowed down my recovery. Four of us living in a house was a major change from two of us camping.

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High Tide from a 600 ft vantage point

It was worth it

Five weeks of planning for a three week trip made for a successful holiday. We met our goals of relaxing, biking and visiting specific historic sites. This three week trip has increased my understanding of living with ABI.