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.

 

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.

Schools: Risky Place for Neuro-atypical Child

kinder-patterns-001Social vulnerability

Prior to my ABI, I could deal with adults who engaged in a wide range of socially unacceptable behaviours. With my career it came with the territory. I would ignore or excuse the negative behaviour and focus on the message the person was trying to share and decipher what response they were looking for.

Living with ABI does not allow me to tolerate much in the way of socially unacceptable behaviour. I’m living too close to my limits. Being neurologically-atypical, my brain very easily goes into a downward spiral due to the neural fatigue triggered by the social indiscretions. I experience additional neural fatigue in trying to make sense of the situation. My body shuts down and makes me unable to function properly for a day or more. Now, for the sake of my own well being I need to keep my distance from people who create these situations.

School yard bullying

I am shocked by the schoolyard bullying statistics for children with disabilities. Students with disabilities experience bullying at 3 to 5 times the rate of neural typical children. (*In one study  63% of children with autism experience bullying compared with 12% for their typically developing siblings.) While I’m still shocked by the apparent lack of empathy exhibited by their peers, my ABI experiences has given me some new insights.

Against the background of my ABI experiences I can understand why  for example, students on the autism spectrum are at very high risk of being bullied. It is partially due to the invisibility of their disability. Since their disability is not visible, their atypical behaviour is viewed as abnormal making their peers feel that they are the target of the behaviour.

Neurologically atypical risk

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Primary classroom

Any child who is neurally atypical is at greater risk of being bullied. This refers to many children who are neurally atypical but have not necessarily been diagnosed. These children often lack the skills to respond in a ‘socially acceptable’ manner. Invariably they are viewed by their peers as ‘odd’. Often they are viewed by other adults as ‘difficult’.

It’s not hard to imagine how social situations with even borderline neurally atypical children can spiral out of control over time making the child a target for bullying.

When I encounter an adult who lacks some significant social awareness I will experience neural fatigue which can induce other physiological challenges. After a few encounters with such people I am inclined to keep my distance in the future. Contrast this with a neurally atypical child who has little control over their environment when they are in a structured setting such as a school.

If I didn’t have the choice of exiting at will from an unpleasant environment I would see a sharp decline in my quality of life. Unlike a student, I don’t need to ‘argue my case’ to remove myself  from an unpleasant or ‘harmful’ situation. Often I’m not able to explain myself when I’m  dealing with an adult who is socially insensitive. It isn’t till a day or two later, that I’m able to provide an analysis of what contributed to my neural fatigue.

Lacking self autonomy

While I’m at liberty to remove myself from a ‘harmful’ situation, whether with a lame excuse or simply walk out, how does a child in a school setting remove him/herself?  There are rules. Rules have consequences. For a child to walk out of the classroom because something changed in their environment resulting sensory overload, or neural fatigue, things can get complicated quickly. If the teacher wants an explanation from the child in many cases the child will be unable. The child might even be in tears because of the overload or fatigue.

After several repeats of this type of behaviour one of two things happen. Either the child is at risk of being labelled a problem child or educational psychological testing is recommended. It is then hoped that the waiting list for testing isn’t 2 or 3 years.

Young children have a very keen sense when they are not being understood or being affirmed, whether by their peers or the adults in their life. When you add lack of understanding or empathy to a child who already has challenges dealing with their physical environment we have a recipe for disaster.

Empathetic adults are essential

It takes an understanding adult to see past each situation to determine which behaviours are a result of the child being neuro-atypical. Add to that the behaviours that arise from the child not receiving empathy due to being repeatedly misunderstood.

It is critical that adults work from a default stance of “the child is not able,” rather than “the child is uncooperative.” The difference in stance might seem subtle but is easily detected by the child and the child will decide whether the adult is empathetic and can be trusted.

How to provide a safe ‘escape’ for neurally atypical children is something that each adult needs to take seriously. It begins by being aware of what situations become triggers for the neurally atypical student. The triggers  will be unique to each student so there is no generic list to work from.

Action research tool

Any adult who works with a ‘problem’ child needs to take the time and engage in what is referred to as “Action Research.” When a parent, a daycare worker, or a teacher, takes the time to observe and take notes the effect can be profound. Combining empathy with knowledge will do much to avoid frustration for the adult and disappointment for the child. The notes will often uncover patterns or provide nuances that identifies the subtle factors which are at risk of becoming behaviour ‘triggers’. The beauty of the method is that it is responsive, flexible and produces helpful information in a relatively short time.

* Michelle Diament, March 26, 2012 www.disabilityscoop.com

 

 

Visibility – yes or no

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Sand, Sun and Shade

The hidden nature of my disability was brought into amusing focus. Walking along the beach on day, while on a recent holiday, I overheard two people talking. The comment that caught my attention was, “Oh there’s the man with the broken finger.” Later in the day, someone who I had met a few times was concerned when he saw my hand. Was I okay? How did it happen? Do you need a hand? (No pun intended.)

The irony is that the attention this nuisance injury got was wildly disproportionate to the attention my ABI had gotten considering it’s ongoing affects on me.

The response I got to my injured finger reaffirmed in me that at heart most people are considerate. Even what looks like a minor injury is given the benefit of the doubt and people take the time to ensure that all is well and things are on the mend.

As I deal with my ABI some people are in tune with when I’m struggling due to a set back. Others are totally oblivious or choose to ignore the times I struggle. Either they don’t notice or they notice but are uncomfortable and don’t know how to deal with it.

At times I have been dealt harshly by people who took offense to my actions or responses rather than having my actions understood in relation to my ABI. In comparison, if my leg was in a cast no one would take offense if I fail to run along with them when invited. For people who don’t understand ABI I can’t expect them to give me the benefit of the doubt each time.

Symptoms

Most of the  time I am not dealing with an exacerbation of symptoms. On the good days I simply need to be  mindful of my limitations and avoid activities that create stress or sensory loading.

As much as I try to avoid situations that become cognitively too demanding, resulting in neurological fatigue, there are times that it does happen. The longer the stressful situation persists the worse the after effects are, requiring longer recovery time.

The symptoms are multi-faceted. At times the symptoms begin to manifest themselves subtly while I’m in a ‘stressful’ situation, other times my whole body begins to shut down noticeably while I’m clearly beyond my limitations.

Let me describe what happens if I’m in a protracted discussion in which I need to resolve a conflict. Fortunately this is a rare occurrence.

A difficult discussion requires several skills that for me are seriously compromised. Problem solving has gone out of the window. I can’t think on my feet. Initially I can engage in the discussion, respond to questions, or explain myself.

If I’m being mindful I will notice that I gradually shift from being actively engaged to moving into a listening mode. My verbal responses will become more intermittent and brief in nature. Gradually I will not be able formulate a coherent response. I will find it increasingly more difficult to process what I’m hearing, evaluate the import of the comments and decide what requires a response. At this point the mental process of remembering the salient points, and formulating a response becomes laboured. As neural fatigue becomes more pronounced I become unable to respond to even straight forward information of fact. My memory starts to fails me and leaves me unable to correct errors of fact.

Once I can no longer comprehend basic questions I know my body begins to physically shut down. The neural fatigue affects my muscle coordination and my emotional vulnerability. At that point I know I need to remove myself from the situation. Hopefully the opportunity avails itself sooner rather than later.

When I am experiencing neural fatigue I notice that it most directly affects the part of my brain that controls several important functions; sleep patterns, emotions, body functions like hunger, temperature response, memory and a natural defense response to my environment.

Recovery

In the following three to five days that it generally takes to recover a number of things happen. The first day or so I will have a headache at least part of the day. (At this point in my recovery headaches have thankfully become uncommon.) Walking will be more difficult due to a loss of muscle coordination. If I approach the top of a stairway, I need to pause before I take the first step down. I need to make sure that my brain has adjusted to the change. To miscalculate the first step would put me a risk of falling down the flight of stairs.

After sitting for longer than 15 minutes standing up and walking becomes a difficult transition. The lack of muscle coordination makes getting up awkward. Often I’ll need to support myself and focus on my balance while attempting my first few steps. It’s like my brain is waiting for a cheer leader to get me moving.

The neural fatigue, even though it slows down my brain functioning, doesn’t let me simply nod off when I want to sleep. The neural fatigue directly interferes with my ability to sleep. It is common to have a couple nights with only 3 or 4 hours of sleep. I try to augment my sleep by napping during the day but rarely manage more than a half hour to 45 minutes. The neural fatigue results in my brain not being able to prioritize functions. I’m not able to filter input and as a result I’m not able to put aside ideas or impressions that keep me awake.

Listening to a radio program or reading is one way to redirect my attention so that I can fall asleep. However, my sleep is easily interrupted and leaves me feeling tired on waking. I know I’m making progress once I’m able to nap for an hour and a half or longer. (Any nap over 30 minutes is not really a nap because it’s long enough to put ones body through a complete sleep cycle.)

During the first couple of recovery days, answering a phone call, or meeting a visitor at the door is disorienting. Initially my response is quiet and my tone is guarded. The response to a call or a visitor puts too much demand on my mental resources; who is calling, what do they want, what is expected of me. Taking in all that information while at the same time formulating a greeting is taxing and happens with awkward pauses. It’s not the split second reflex that I could handle pre-ABI. As a result my tone of voice will not sound very welcoming. My slower response leaves a second indicator that could be interpreted as annoyance at being bothered.

In the first couple of days I am emotionally vulnerable. Any additional stress such as hearing bad news on the radio will stop me in my tracks. Any bad news about family or friends will affect me in an exaggerated way. During this time I avoid documentaries, videos or books that deal with topics of loss or pain.

Least intrusive is experiencing double vision during the first day or so. When it first happened I didn’t notice it. One day it dawned on me that I was seeing signage with a shadow effect. I couldn’t recall which store signs actually had that effect. I knew for sure I was dealing with double vision when road signage had the shadow effect.

My short term memory is compromised during those first few days. I will find myself forgetting simple things. Remembering a second errand will have disappears while walking across the house. That in itself reminds me to slow things down for a few days.

When I’m going through a 3 to 5 day recovery time most people are not aware that I’m struggling. Those who know me do notice and give me space and time.

Visible or Invisible

The visible reminders that come with open wound injuries has the benefit of being understood and people giving due consideration. While that might seem helpful, it also comes with a continuing reminder that you are dealing with an injury. Sometimes I don’t want to get a reminder.

When dealing with ABI there are no obvious visible clues to remind others when I am experiencing a difficult phase in my recovery. At the same time, I wouldn’t want my struggle to be openly obvious to each passing stranger. There is comfort in having a certain amount of anonymity.

I’m encouraged when I’m dealing with someone and they comment, “Doesn’t look like you’re having a good day.” I very much appreciate it when in response they make some accommodations or ask how they can be of help. I don’t mind when people want to clarify their observation. It’s helpful for both of us. It definitely helps avoid the hurt or insult that happens when someone is oblivious to my condition.

Part of good social etiquette is tuning in the the person you are talking to. We might not tune in when we are in a hurry or we have something urgent on our mind, but it helps us communicate more effectively when we are mindful of our default position.

(I didn’t think it was appropriate to post a picture of my ‘talking finger’ extended in a cast. Just saying.)

It Better Be Good

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Dry stack wall – Ennismore

I decided to attend an educators’ convention as an honourary member. After 36 years as a paying member I smile at being given the title ‘honourary’. Deciding to attend was easy, attending was a different story.

Preparation

In order to attend I needed to get to the event. Knowing that my driving limit is about 100 km, I knew the 200 km trip would be pushing my limit. For good measure I gave myself a slight advantage by not setting my alarm clock. I would let my body indicate when I was reasonably rested. Had I woken up at 9:00 I might have abandoned the idea of attending.

I was on the road by 7:00. I complimented my body both on being awake and getting organized and out of the house within an hour of waking. The two hour trip took almost double the time due to the slow traffic caused by the rain.

Arrival

I arrived at the event feeling overtaxed, the sensory loading and the neural fatigue had left its mark. Neural fatigue and socializing just don’t mix. With over a thousand people at the event, I felt I was in the wrong place. I had definite misgivings about staying.

Since it was almost lunch time I assembled a plate of food from the buffet table and searched out a quiet place to eat. I had to get away from the overcrowded area soon to be filled with hundreds of people. The volume, the acoustical effect of block walls, would do nothing to help reduce my neural fatigue.

Eating lunch; the nutrition and the calm location, should help to relieve some of the fatigue. Shortly a former colleague approached and asked if I was open to having someone join me for lunch. Her sensitivity, and consideration was a clear signal to extend an invitation.

Had a boisterous and excitable colleague approached me I would have cringed. Had a colleague who didn’t have the sensitivity to engage in a balance conversation approached me my fatigue would have persisted and left me discouraged. Had a colleague who was absorbed in their own accomplishments joined me I would have gone into a downward spiral.

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Nature’s scuplture

Engaged

We shared laughter. We shared tears. It was energizing and refreshing. The nutritious lunch, the supportive company and the brief time to relax, rekindled a desire to participate in the afternoon events. Her awareness of my needs and mindfulness during our lunch gave me the social momentum as it helped to dissolve my isolation.

On the second day of the convention, after a good night’s sleep, I was in better shape. Another colleague shared how my experiences of living with ABI has given her insight into some of the challenges her students face. We discussed various possible challenges that neurologically atypical children likely encounter in institutional settings like schools.

Tripped up

We ended our discussion as we entered the auditorium to join in the opening program of the day. No sooner did we step inside when 800 people, accompanied by four amplified musical instruments, broke into song. For me the music had the effect of a sound canon. My only saving grace was having taken a seat a mere ten steps from the exit. Despite my quick exit, it took me ten minutes to recover. The five seconds of music had transformed me from engaging in an animated discussion  into sensory overload. Unable to even speak I couldn’t alert my colleague that I needed to make a hasty retreat. Nor could I afford to delay my exit.

Reflection

In reflecting on the convention the sessions were engaging and left me with food for thought. However, I need more than that to rate the experience as ‘good’.

Despite being in the profession for more than three decades, for me the event was not so much about looking back as it was about looking forward. Considering ways to serve educators in new ways. Exploring that potential made the effort and challenges of getting to and attending the convention worthwhile.

While my ABI coloured much of my time at the convention, it did not define my experience.

Antisocial Hiking

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Therapeutic Hiking isn’t Meant to be Social.

When my neural fatigue level is near its max, hiking is not a social activity. Even if I do the hike with an other person, it is mainly a therapeutic exercise. It takes effort. It requires focus. And I need to be mindful.

Background

Last weekend, the suggestion to go for a hike did not thrill me. The activities of the first part of the weekend had put my neural fatigue at about 90%. While one part of me was hoping for a no answer, the other part of me knew that the repetitive physical activity and being outdoors would be therapeutic.

I should mention that the neural fatigue I experienced that day did not come as a surprise. I had been looking forward to having a couple visitors over night. The second day our house was the location for a Canadian Thanksgiving dinner for eighteen members of our extended family. Early into the second day my body gave me signals that I would have to limit my time being around that many people. I had hoped that two naps earlier in the day would help, but the signals persisted. To avoid the negative consequences of ignoring the signals my body was giving me, I felt compelled to miss the dinner. To participate in a structured activity within a confined space was clearly a recipe for trouble. I did not want a repeat of several previous experiences.

The hike

20161014_172031I agreed to the hike as my past experience has shown that repetitive physical activity has a way of relieving neural fatigue. Doing the repetitive physical activity in the outdoors with the brilliant colours of the maples and sumac in contrast to the conifers would be an uplifting experience.

The start of the hike was the hardest. What motivated me was anticipating the benefits at some point. Doing the hike requires neural activity. The neural fatigue meant my coordination was noticeably lacking, my balance was unpredictable despite the fairly even terrain, and my gait was irregular. My left arm was picking up the cadence of my walk fairly early in the hike. My right arm took much longer to get into the swing of it. My lack of coordination meant I had to be mindful of the occasional rough spots in the trail. All of this affected my starting pace which was about 3 km/hr.

When the hike is meant as a therapeutic activity, I’m not great company. If I feel compelled to carry on a conversation that would be adding to my neural fatigue, making the hike counter-productive or possibly even having to abort the hike. Even so, the first part of the hike increased my neural fatigue.

Towards the end of the hike I had been able to increase my pace to 8 km/hr. This was a clear indication that I had reduced my level of fatigue. The increase in my pace was not a straight line increase. Some early attempts to increase my pace took too much effort and so I found my self slowing down. Needless to say, my irregular pace doesn’t make me a very sociable hiking buddy.

I refuse to be apologetic about the apparent antisocial behaviour which I might exhibit while hiking. To be apologetic about that is as counter-productive as apologizing for being short, or apologizing for not being able to run while your leg is in a cast.  A commitment to change is what is inherent for an apology to be sincere. So it doesn’t make sense to apologize for things one can’t change.

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Ganaraska Forest

While some of my behaviour can be considered antisocial when my neural fatigue is high, I will make an effort to acknowledge other hikers as I meet them but I would fare better on trails where there are few hikers.

Exercising on a treadmill doesn’t have nearly the benefits or appeal of a hike. A treadmill provides the repetitive physical exercise but it is a monotonous repetition. Every step is identical and predictable. Also, the scenery doesn’t change when one walks on a treadmill. With a treadmill there is also the disadvantage of being locked indoors.

The one hour hike gave me the energy to be active for a few extra hours. That makes the hike a doubly rewarding activity.

Pondering the source of my anti-social hiking

All actions require brain activity, whether the actions be a reflex action or a carefully calculated action. All brain activity is done by use of neural pathways that communicate with different parts of the brain before sending messages that are translated into actions by way of our nervous system. The actions can be speaking, walking, waving etc. The neural pathways in the brain can be compared to the maze of streets in a major city.

With my acquired brain injury neural pathways in different parts of my brain were damaged (micro tears in different areas of the brain) making it impossible for brain signals to pass through certain areas. Just like a city with roads that are damaged and being repaired. The damaged roads create detours which lead to traffic jams where there previously hadn’t been any.

I am gradually gaining muscle tone. (Brain injury had a dramatic impact on that.) I have increased my physical endurance from biking five kilometers at a time last spring to fifty kilometers at a time recently. While my endurance for a fairly repetitive physical activity is improving, it is much harder to develop endurance for activities that require more demanding brain activity.

Being in a social setting is neurologically much more complicated than biking. In a social setting there are a host of sub-activities happening: listening, decoding sounds, interpreting tone, making eye contact, focusing, reading body language, reading other people’s body language, tracking the conversation, deciding what to respond to, formulating a response, finding an appropriate segway, remembering, etc. All these different sub-activities has the brain communicating with several different parts of the brain along a complex network of neural connectors.

With ABI the complexities of a social setting and the heavy neural activity is like a city with many detours. It makes all the different sub-activities much more demanding brain activity. Think of it as crisscrossing a city while regularly encountering detours without a map to redirect you.

When I’m in a social setting, no one can see my neural activity working double overtime.  The congestion in my neural pathways quietly takes it’s toll. Neural fatigue subtly and sometimes not so subtly begins to set in.

If I ignore the fatigue because I want to be part of the action, the fatigue continues to build. Sometimes the fatigue builds unnoticed. Then once I’m away from the momentum of the social setting the fatigue can feel like hitting a wall. The longer I stay in the social setting the greater the level of neural fatigue builds, the longer it take to recuperate.

Over time I hope the neural ‘detours’ start to clear up. According to Norman Doidge, (The Brain’s Way of Healing) the brain had an amazing ability to heal itself. Part of the healing comes through intentional training.

Weight training produces incremental gains. One can’t expect to lift 300 pounds after one week of training. Early on, after experiencing ABI I was unaware of various social miscues that would happen. As I have time to heal, I experience incremental improvements in my ability to participate in social settings. I am able to participate for longer periods of time. I am able to gradually take in more complex social settings. A key factor is the level of neural fatigue I have before stepping into a social setting.