I’m a Different Person

Snakes & Ladders
Snakes & Ladders

I was listening to a story about a gentleman in his nineties who had recently died. Despite living in poverty he regularly bought birdfeed for the wildlife that visited his yard. He had one reason. When he was a young man he had been imprisoned in a concentration camp. From his cell the only thing he could see through the window near the ceiling was the occasional bird flying by. It was these birds that gave him hope. They helped he dream about freedom. They helped him imagine himself beyond the immediate circumstance he found himself in.

When he was liberated from the concentration camp he kept his one promise, his promise to never fail to feed the birds. And so, despite his meager means, he always kept the birds fed that visited his backyard.

As I heard the story, I was not able to contain my tears. I had to pull over to the side of the road to give myself time compose myself.

Later that day, I shared the story and my own reaction to it with a friend. In retelling the story I was once again overcome with emotion. I explained that I rarely had this type of response to stories prior to my brain injury.

In response to that, my friend asked if I hoped to maintain this level of sensitivity. I’m not sure. On the one hand I see it as a good thing. I mean, can one be too empathetic? On the other hand it seems rather disruptive to be hyper sensitive.

If I listen to a similar story but with fictitious characters, my response is very neutral. It’s just a story.

The stories or situations that touch me deeply usually involve someone dealing with a personal struggle or someone reaching out with compassion.

Recently a niece of mine was dealing with a serious health situation in which her child had been put into an induced coma. My heart went out to him. Each time I heard an update on how he was doing I was in tears.

churchyard
Percy 1997

Last week I walked through the church yard with my grandson. We were looking at different grave stones and commenting on some of the people, different neighbours we I had known from the last 30 years. When I saw Percy’s grave stone, dated almost 20 years ago, I was moved to tears. I had known him for a number of years. He had come to Canada as a Bernardo child. His disability limited him to working as a farm hand. He had been badly treated as a farm hand for many years. The memory of the struggles he had gone through and the compassion that the last family had shown him touched me deeply.

These experiences and many other similar situations make me realize I am a different person from a year ago. In addition to the brain injury, I could no longer continue my job. As a result I no longer identify myself by my job title. I now realize that the job title coloured my view of myself more than I realized. I no longer carry the responsibilities or the demands on my time. Life has slowed down considerably. I now have more time to focus on other matters.

I now have time for people who live right around me. The half hour or forty-five minute commute, twice a day, are behind me. In the past year I have spent more time with people in the neighbourhood and have met more new neighbours than I did in the previous 29 years that we have lived on Minifie Rd.

I also found out recently that we no longer live rural but now actually live in the hamlet. No, we did not move our house. The hamlet now includes our property through some invisible shift. Not that the change gives us any additional municipal services.

My familiarity with fatigue and headaches makes me take my time when completing chores or running errands. I have no need to hurry. I’m not living with goals that have firm or urgent deadlines. That part is rather enjoyable. At the same time I am finding things to do that are meaningful or rewarding on a different level.

My slower pace is particularly noticeable when I am experiencing fatigue. I have become that annoying driver on the road that is driving at the speed limit or, oh horrors enough, even below the speed limit. I can’t believe how hard it is to push that gas pedal down a bit harder. If I think of it I switch to cruise control for the sake of the traffic behind me.

One of my slowed down activities that I’m actually enjoying is playing Snakes & Ladders. It’s not the Snakes & Ladders that exciting, but watching my four year old grandson’s excitement when playing the game. He’s excited when he gets to go up a ladder. He gets twice as loud and excited when he goes down a snake, because then the game will take longer.

I’ve made the game more interesting by suggesting that he not count out the moves after he rolls the dice but to simply add the numbers together. It’s fascinating seeing his number sense grow. Soon he was telling me which numbers to not roll to avoid the snakes. Recently he did some subtraction to figure out how many spaces a particular snake would set him back.

I’m starting to acknowledge the reality of what I read recently. An experience with mTBI means I will never be the same person again. In some ways I’m okay with that. Some days.

Walking More Than a Mile in Different Shoes

Compost Heater Prototype
Compost Heater Prototype

 

This isn’t how I would have chosen to learn about mTBI (mild traumatic brain injury). I have often wondered, while visiting with a friend who has partially recovered from a workplace brain injury, what is holding him back from taking on his previous responsibilities. The public face makes him look quite capable. I couldn’t figure out what I was failing to see. My understanding did not extend to what was really going on. I lacked the perception to recognize the non-public face of his disability.

Now that I am dealing with a very slow recovery from mTBI, I have been asked similar questions. The questions do not surprise me. In my experience the questions have come from a caring heart. The questions have been very well-meaning. At heart people want to know, they want to understand. If it’s not asked as a question, it comes as an observation. The comment might be, “You seem to be very capable.” Yes, at times I am very capable. In many ways I am very capable.

Dealing with mTBI does not mean I’m an invalid. However, at different times there are a variety of things that I am just not able to do. There are times that I am unable to run. There are times when I have difficulty with balance while walking. There are times that I cannot focus my attention on a task. There are times when I have minimal physical endurance. There are times when it is impossible to find a solution to an uncomplicated situation. There are times when I just don’t know how to finish my errands and get back home.

When I experience times of inability that’s when you won’t see me in public. At times when I’m in public, situations do develop when I gradually or even quite suddenly find myself in a situation of inability. When I can’t maintain my public face I choose to quietly retreat. When a quiet retreat is not possible I am compelled to put more and more of my energy into maintaining my public face. The longer it takes to retreat to, the more effort and energy I expend. This comes at a cost.

In one surprising situation about six months ago took it took me four days to recover. I had gone to the dentist for a scheduled appointment. I had explained to the dentist my situation and felt I was okay to go ahead with getting a filling. As the dentist was freezing, drilling and applying clamps he would check in with me. At first I would nod or grunt indicating I was fine, and I actually was doing fine. Gradually I began to realize I was not doing okay, but I still kept nodding. At a certain point I didn’t want the dentist to quit. How could he quit having drilled out the cavity but not being done the filling? After he finished he stepped out of the room. When he stepped back in a couple minutes later he noticed that I was in no condition to leave the office on my own, let alone, drive myself home. A family member was called to rescue me. I am not ready for another dental appointment.

I avoid places where I can’t retreat easily from a public place. At first that was difficult because I did not recognize any of my early warning signals or symptoms. Now I know the symptoms but don’t always recognize them before they overpower my ability to function. If I’m with a family member, they are able to help me in two ways. They can help me retreat and assure other people that things are under control. Secondly, they often recognize the early symptoms before I’m aware of them, so I can retreat in a timely manner.

Another challenge of dealing with mTBI is that often I find myself in denial. Sometimes I wake up with minimal symptoms; minimal headache, no fatigue, reasonably alert, able to move around well. That’s when I think I could be doing the things I had previously been doing. Maybe I’m ready to assume more of my previous responsibilities. It’s a wonderful sensation and one that gives me hope.

If the sensation lasts all day it’s a real bonus. More often the sensation lasts the first hour or two of the day. Sometimes it lasts a half day. The most predictable part of waking up each morning is that the day will not be the same as the day before. Sometimes the day begins with rather severe symptoms which then gradually diminish. Most days, the symptoms gradually escalate as the day progresses. Usually the symptoms subside sometime during the evening.

Aside from a couple of extreme events there does not appear to be a clear cause and effect association with the symptoms. My wife and I have tried to surmise some possible cause and effect scenarios. We’ve discussed the intensity of activities the day before. We’ve looked at different stress factors. We’ve considered changes in the weather, drastic changes in temperature or changes in barometric pressure. The symptoms could be a reaction to a situation or activity several days earlier. If there is a pattern or a cause and effect it has eluded me so far.

The unpredictable nature of each day makes it difficult to plan events and some visits. Even if I’m having a difficult day I will keep my appointment to visit friends. It’s helpful to remain connected and it also serves as a distraction from the symptoms whether they are building or gradually subsiding. My level of engagement during a visit will vary. That’s why friends are special.

When I am having a good day or when I need a distraction from the symptoms, I will find opportunities to do something. This could mean helping a neighbour for a couple of hours, or working on a project at home. When I’m looking for a distraction from the symptoms it helps to do something physical. Having something not too strenuous, somewhat repetitive and moderately familiar is the most helpful.

Last fall I completed a project at home that normally would have taken me a week or two to complete. With my slower and off again on again pace it took me five months to complete. I would work on it on the days I was able. I had no fixed deadline so there was no urgency to complete it. On completion there was a sense of accomplishment. (See the picture of the compost heating project above.)

I am always on the lookout for projects that bring healing. Outdoor projects, ones with no firm deadline, ones that involve a certain amount of repetitive movements, ones that engender a sense of accomplishment.

I share this to help bring about greater understanding for people who have someone in their life who is dealing with mTBI. While the nature of each person’s experience will depend on what part of the brain has been affected, there are likely similarities in seeking answers and finding understanding.

When Measuring is Helpful

Outdoors opens up the healing process
Being outdoors opens up the healing process

In my previous post I had shared how my life had been different in the past 12 months following a motor vehicle collision. Despite the drastic changes, the journey of healing has left me feeling surprisingly hopeful and positive. That is not the trajectory that my family doctor had cautioned me about. Some of this optimistic outlook is possibly from having been forewarned about the possible serious side effects that accompanies an mTBI type of injury.

Two years ago I presented a workshop for a group of peers on Daniel Pink’s book To Sell is Human: The Surprising Truth About Moving Others. The concept of measuring progress creates encouragement. When progress is slow, erratic and at times things seem to move backward it’s important and helpful to measure or compare change over time to recognize progress.

While there are many things I would like to be able to do now, but can’t, there are areas where healing is clearly. There are many areas where I am hopeful that I will see improvement.

What has improved?

  1. Last June, after writing a 7 minute graduation speech it took a full day to recuperate. I can now complete a blog entry without experiencing fatigue.
  2. Last spring after walking a kilometer I experienced such extreme fatigue that it took me an hour to walk the kilometer back home. (Note to self – carry a cell phone when going for a walk.) Now I can walk ten kilometers and tire out a jack russell before I experience extreme fatigue.
  3. Last spring, if I needed to do 3 things I would be lucky if I remembered to even do the first task before getting distracted or walking back into the house. Now, when I get distracted and I am able to recall what I had planned to do. Friends my age tell me they have the same problem.
  4. Last September it took me a day and a half to recover from listening to 40 minutes of live music. I can now listen to live music, wearing musician earplugs, for 30 minutes before experiencing sensory overload. If I forget to monitor myself, and go into sensory overload, my recovery time is anywhere from 15 minutes to 2 hours.
  5. Last summer it would take me a day to recover if I drove a half hour away from home. Recently I have occasionally driven two hours, sometimes needing only an hour to recuperate and sometimes needing a day to recuperate.
  6. Last spring, if I attended a church service, the sensory overload would set me back a full day or more. I am now able to participate in about half of the service, making a point of stepping out for most of the live music.

Some of the improvement might not seem like a big change. But I am seeing progress. As long as I measure my progress over time it is easier to deal with temporary setbacks.

One interesting, yet not surprising thing I have noticed is that being outside is more healing than being in a building. More about that another time.

A view from the other side

Willdup_130815_00299

Two and a half years ago I participated in 1400 km of the Sea to Sea bike ride. In drumming up personal sponsorship, I had focused on developing awareness for people who live in poverty due to hidden disabilities.

Little did I realize that 18 months later I would be counted among those with a ‘hidden’ disability. A year ago I was involved in a motor vehicle accident that left me disabled. A disability that was later diagnosed as mTBI (mild traumatic brain injury) leaving me unable to perform my work duties as an elementary school principal.

Being that is was an acquired injury, I did not realize to what extent it was and would affect my work. During the first several weeks my symptoms continued to worsen. After struggling to work part time for a few weeks I was persuaded that I needed to stop working.

The disability has changed my life style dramatically.

I would normally go to bed because I was sleepy, not because I was tired. Now I often experience fatigue throughout a significant part of the day.

Headaches for me was a very rare occurrence. Now I’ve gotten used to it being there almost on a daily basis.

Two years ago I had the endurance to cycle 135 km in a day, doing 50 km on a unicycle. Now I feel good if I manage 5 to 10 km at a moderate pace.

Each year on Labour Day weekend I would join my family at the Shelter Valley Folk Festival for 3 days of music. Now I can’t listen to live music longer than 30 minutes without having my brain shut down.

It’s an injury that is hard to measure. In one area the specialist gave me a general indicator. After completing a battery of assessments one of the things that was determined is that my memory is now function at about 50% of what I was capable of pre-accident.

The injury continues to affect me physically, behaviourally and cognitively. If I attempt an activity that leaves me cognitively challenged, it takes me from 1 to 4 days to recover. During the recovery time I experience a wide range of physical challenges. It’s amazing how the brain and the rest of the body are so closely connected.

If you see me in town on a good day, you can’t tell that I’m dealing with a disability. A colleague told me recently that I seem to function normally. She was right. When there are no demands and pressures a day can seem quite normal. However, that is not how a day normally goes, whether one is at home or at work.

What has been very clear in my experience is the incredible level of support and understanding I have received from my community; that is my church community, my school community and my family. Jane, my wife has been incredibly patient, understanding and supportive, day in and day out. I can’t begin to list all the extra duties she has willingly taken on.

In response to the support I am experiencing, I would like to explain what the personal challenges are. The problem is I lack the ability to explain it, because I don’t really understand it myself. It’s just how it is. It’s not headaches that happen – it’s the underlying issue that partly shows up as a headache, among other symptoms. The headaches are a gauge. But it’s like a gauge that hasn’t been labelled or even calibrated.

My initial goal following the accident was to still go ahead with my plan to cycle from Jasper Albert to Montana in July of 2015. I realized after a few months that I would have to abandon that plan. I couldn’t even manage a 2 hour ride in the car. How could I even get to Alberta? My goal at this time is to cycle all or part of the 2017 Sea to Sea. That’s a year and a half from now.

While recovery seems to move at less than a snail’s pace, the encouraging thing is that there is improvement. While this experience has made me empathetic to other’s with brain injury, I don’t think I am anywhere near being able to understand how people fare when dealing with a severe brain injury. What I have experienced is that an understanding and supportive community goes a long way in managing one’s disability.

 

Four Days of Backpacking – reflections about the ride #2

Algonguin Lookout
Recently I had the opportunity to participate in a 4 day backpacking excursion with sixteen 12 year old students. We started out with ideal fall weather, cool nights and daytime temperatures in the low 20’s. Being outfitted for 4 days of backpacking is more challenging than a walk in the park. You can’t go 4 days unless you have a good supply of food, tents, water purifying equipment, rain gear etc.

Preparing young students for living in today’s society requires educational experiences that go beyond the walls of the classroom. Bringing 16 young students away from the supports of home requires them to make some adjustments. Being away from running water, away from ready cooked meals,  away from clean drinking water on demand, away from a house that protects them from the elements, creates some memorable learning opportunities.

On a more superficial level, though no less important, the backpacking trip creates an opportunity to learn skills such as fire building, basic first aid, packing and fitting a backpack, orienteering and map reading. While these would be considered survival skills, they could probably be taught equally well in a classroom. However, when some of these skills are taught ‘in the field’ they take on a greater urgency when it is on a ‘need to know’ basis (though we hope it doesn’t come to that).

The backpacking trip extends to teaching the young students some essential life skills that would be applicable in many other situations. The skills relate to living in community. While in the bush, the students realize they need to depend on each other. That requires them to look out for each other and offer assistance when needed. (The adults are there to guide them, not bail them out.)

The first evening was an interesting situation. The students were sitting around the campfire pit, talking and laughing. However, it was approaching supper time and no one was making a move to gather firewood and get a cooking fire started. On the urging of one of the adults to get firewood and what was needed for kindling an interesting thing happened. Two students stood up to begin gathering firewood. The other eight students just sat there. They seemed to expect that the camp fire thing would somehow happen. Only after a very pointed instruction that everyone needed to help get firewood, did the rest of the students get up and being the job of gathering.

A similar lesson needed to be learned for preparing for cooking, getting the bear bag ready for the night, setting up tents, putting backpacks away so personal effects wouldn’t get rained on, taking down and packing the tents in the morning and so on.

The students gradually began to realize the importance of planning ahead, seeing what they could do to contribute to their own needs and to the needs of the whole group.

The goal was to bring the students to the undertanding that they needed to initiate the next step. The students needed to come to the point of realizing that an adult, whether a parent or someone else, wasn’t going to necessarily tell them what needed to be done.

Part of the learning process was having a couple of student leaders assigned each day to take charge. The student leaders would be briefed on what needed to be done that day. It was then their job to organize what needed to be done and then delegate the various tasks to the other students.

The student leaders were faced with a number of challenges, the least of which might have been getting fellow students to follow through on what they were asked to do.

The backpacking experience offers opportunities to create object lessons. Students were reminded to distribute the food and cooking utensils when they were packing up so that the load would be distributed evenly. One day, after asking students whether this was happening, we asked all the students to line up, drop their packs, take a step forward and pick up their neighbour’s pack. The next 20 minutes of hiking was an eye opener for some of the students.

In taking a  group of young students on a hiking excursion there are some interesting observations that can be gleaned.

1. Empowerment: There are skills one would expect a 12 year old to have mastered. When the opportunities to learn those skills are taken away from them there is a learned helplessness. It might be more efficient for an adult to do a particular task, but what is lost is the opportunity for a student to learn a new skill. What is lost is the opportunity to empower a child.

2. Contributing: At age 12, children are capable and in a position to make valuable contributions. Through words of encouragement students begin to realize and appreciate the difference they can make when they contribute to the needs of a group.

3. Empathy: Learning to recognize the need to lend a hand or help someone comes from learning to observe what is happening. From there developing a sense of empathy and understanding leads to specific actions.

4. Accomplishment: It is interesting to watch a student struggle with their pack over a four day period. In that time suggestions were made on how to balance a pack or make adjustments on the straps. However, when the same student was met on the trail by another adult who offered to carry the pack, the student chose to complete the last kilometer of the hike carrying his full pack. The sense of accomplishment was clearly evident.

Poverty relates to a loss of community and each person’s place and role. The experience of a four day backpacking trip helps students experience a variety of elements that makes for a community. When all they have to depend on for 4 days is each other, some real learning and growth begins to happen.

Bewdley, Ontario at Sunrise

Bewdley, Ontario at Sunrise
Mysterious Mist on Rice Lake

It is well worth cycling 25 km before going to work. Going from 2 weeks of just eat, cycle and sleep, being back at work is like trading a simple life for a complex and busy life..

Don’t get me wrong. What’s not to like about my job working with a great faculty and support staff and anticipating the return of eager students. That’s all great.
Two days ago I met Joey when I stopped briefly in Bewdley at the waterfront. Joey had been there with his bike since about 3:30 am because he was unable to sleep.
Joey’s life story is one of disappointment and hope. Due to a work accident he had been left a quadrapalegic. After more than 1 bout of cancer he was determined to get back on his feet. That is how I met him, once again being able to walk and cycle.
He can manage to bike 3 km a day or handle a weedwhacker for about an hour. He can’t lift objects. His life sure seems simpler than mine. He takes more time to enjoy the spectacular sunrise over the water. A simpler life at first glance but at the same time not without considerable challenges.
It was my 2 weeks of cycling that raised My awareness and compelled me to strike up a conversation with him and at the same time being encouraged by him.

Poverty: A Tangle of Roots

I am back to work and quickly find myself in the demands and time crunch of guiding a small independent Christian school to once again be ready to receive the students for another year of learning. It seems like September 3 is just around the corner.

The need to work at breaking the cycle of poverty begins in working with students ages 4 to14. At this age already, one can observe situations and conditions that put students at risk of living a life of poverty.

If poverty is a loss of connection with others, an absence of community, then we need to recognize students who have challenges when it comes to connecting with their peers. These challenges are most prevalent for students that have learning, social or emotional challenges or physical disabilities.

Each child wants to be acknowledged, wants to be recognized as a valued part of their peer group. However, students who have non-verbal learning issues, students who are dealing with the effects of autism, students who experience fetal alcohol spectrum disorder often experience difficulty in connecting with other students. Students with these types of challenges need someone to advocate for them in order to learn how to connect with their peers. They also need the support of their peers by having peers who have been taught to show empathy.

Showing empathy does not happen often enough as a auto response. It must be part of the program planning at a school to help students understand the challenges students with disabilities are dealing with. One such lesson involved getting the whole class involved in a simulation of what it is like for a child with autism to deal with sensory overload. Following such a simulation, the students were then given an opportunity to debrief and analyse the experience.

Using simulations to develop empathy is but a small first step. This must then be followed up by reinforcing and encouraging supporting behaviour.

It’s often the people who are most in need of supporting behaviour that are sidelined by hurtful comments or actions that are done to them. Part of breaking the cycle of poverty is to learn to develop communities of support, communities the encourage peace, communities that value each member for their differences or their sameness.

As we begin a new school year, we have several students, new to the school, who have social challenges. Our challenge as faculty is to rally the students to reach out in empathy and support.