Good Social Fences Make…

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Wrought Iron Gate

Living with ABI has it’s unexpected challenges. I was in a situation recently that completely blindsided me. It was the physiological changes that took over my body informed me that something was amiss.

I had a neighbour approach me recently for a favour. On the face it I saw no issue with the request. I felt I could reasonably accommodate the request. I gave the request a generic approval.

A week later I picked up the conversation to ask what terms the neighbour wanted to work out. He told me it was up to me to set the terms. I suggested that since he made the request that he offer the terms as he knew what the scope of the request entailed  He was rather vague about the extent of the favour. After reiterating my point it became clear that the ball was definitely in my court.

I proceeded to outline my terms. In hindsight, the terms were not only reasonable but more importantly included some very clearly defined boundaries. I figured that was the end of the discussion and that everything was fine.

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Split rail fence – Peters Woods

With my ABI it is important that I had time between the initial request and the followup discussion. I took a week to think through the implications of the request. When it came to discussing the terms I had a clear idea worked out. Because of my cognitive challenges I am too slow at processing during a discussion to recognize whether I’m agreeing to a  condition that is fair and reasonable.

Once I had set my terms, I found out that the discussion was not over. My terms were countered with an explanation that there were some difficulties and would I do it on his terms. Since I knew the risk of diverting from my plan, and the difficulty I have with mental flexibility, I chose to hold onto the key elements of my terms.

As the discussion proceeded the not so subtle message was that I had created an obstacle. During this ten minute discussion the tone of the agreement had in some crazy way gone from me being  helpful to creating a problem. I couldn’t see the benefit of backing out of the agreement. I also wasn’t ready to deal with the complication of backing away from the request. On the whole I thought we parted amicably.

Physiological repercussions

After the neighbour left I realized I had gone from feeling energetic to extreme fatigue. The change totally blindsided me. I had no idea that the neurological demands of a conversation could drain my energy so quickly. Shortly after that I came down with a moderate headache which persisted for the next day and a half. However, the after effects did not stop there.

I fell asleep quite easily that evening. Often I have difficulty getting to sleep so this seemed to bode well. However, at 3 am I woke up and found myself wide awake. That was strange because it usually takes me a bit of time to regain full consciousness after a night of sleep. Despite making different attempts to get back to sleep, three o’clock marked the end of my night’s sleep.

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Page wire fence and Field Stone column

Searching for Clarity

It was my body that told me that the ten minute discussion had some deep flaws. My body informed me of what my conscious self chose to overlook. I could not argue with my body. Physiologically I was responding to the trouble that was brewing during the discussion. My neurological processing being too slow combined with the subtle and steady shift during the discussion created the deep flaws.

The discussion had taken several U-turns in short order. Despite having prepared myself for laying out the terms, I still lack the mental flexibility to deal with diversions that pushed me away from setting out clear boundaries. After a couple of U-turns my mind decide I had landed in a good spot. My body told me otherwise.

After the conversation I was in fact dealing with a double blow. The neural fatigue had drained me of all energy, at the same time I was troubled by what seemed to be amiss. This combination of challenges had my brain ‘spinning out of control’. Hence a persistent headache for the next day and a half.

Part way through the next day, once the ‘spinning’ slowed down I started to put the pieces of the discussion together. After it was very clear that I should set the terms of the discussion, a U-turn happened. No sooner did I set the terms, when it was countered with a very different set of conditions. Lacking the metal flexibility it was difficult to wrap my mind around this. Then the neighbour shared an anecdote that would suggest that my terms were reasonable and necessary. Another U-turn. Another neural acceleration and deceleration. When my terms were countered my brain started it’s crazy spin, trying to process whether I was being unreasonable. It didn’t help that I had already determined I had set realistic terms.

With ABI my brain can’t hold two opposing facts side by side. That’s because with ABI my ability to problem solve is very much hampered. As the discussion progressed it was very quickly becoming a major neural energy drain. The last part of the discussion I was told that maybe I hadn’t created an obstacle. Well, partially. Again, a conflicting message that my brain was left to resolve.

I above analysis took more than 24 hours before it came into focus. The neural fatigue as it gradually builds does not announce itself. How can I be mindful of it happening? My full attention is on dealing with the unexpected U-turns. The remaining attention I can muster is trying to resolve the conflicting messages. And so, it isn’t till I’ve moved into a different environment that I will actually be aware of the neural fatigue that has set in.

The most helpful insight in understanding what when wrong in the discussion is to see it from the perspective of boundaries. The purpose of the discussion was to set boundaries for carrying out the favour. Also, the first part of the discussion was to set boundaries for the purpose of the discussion. In the discussion boundaries failed to be honoured. My ABI makes me too slow to recognize that problem during the discussion.

After it was clearly understood that I should set the terms of the favour that should have made it a done deal. Simply a yes or a no would have been the only fair response. Asking for clarification would have been fine and even appreciated.

Respecting boundaries is important in all relationships. Failing to honour boundaries carries with it hurts and confusion. For people living with ABI it is even more important that boundaries are respected. Failure to do so results in much greater fallout and more extensive repercussions.

Living with an acquired disability brings with it a greater sense of honesty in dealing with people. I can no longer choose to overlook an other person’s indiscretion. I might rationalize a situation and decide it’s not worth creating a ‘fuss’. Just let the matter rest.

It’s helpful to learn that my body can’t let the matter rest. To have ongoing dealings with this person there needs to be an honest discussion about what went wrong and why the behaviour needs to change.

Another person’s inappropriate behaviour is too big a drain on me. Such behaviour can cost me a full day or more to recuperate.

My disability causes me to bump up against my limitations. Since I can’t make what previously would have been good will concession, the other person is obliged to change. Unfortunately this too easily brings an end to relationships. I can not deal with a person who does not respect some basic social rules and a considerate level of social empathy.

In a recent discussion with my daughter while sharing a leisurely supper she shared a perspective that is very helpful. This might look like an abnormal response to a normal situation, when in reality it was a normal response to an abnormal situation.

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Quality of Life

medieval-timesPerplexed

It took me a year before I was able to put into words what it was like to live with ABI. Yes, I could describe the daily pains and limitations. Things were changing day by day. No patterns were apparent. I was in unfamiliar territory. I was disoriented. I needed time to reflect, to perceive the new rhythm of my life. Without that I could not make much sense of what was happening.

To answer simple questions like, “How’s it going?” was too open ended. If it was intended as a greeting, a response of ‘I’m doing fine’ didn’t make much sense. If I recognized the question as more than a greeting, I was at a loss for words. I didn’t know how to condense my experience, identify what might be of significance and formulate a coherent response. Part of the challenge came from experiencing significant memory loss coupled with compromised cognitive functions. The biggest part of the challenge arose from the relatively short reflective history of my ABI timeline.

Understanding questions

Often I was asked, “Do you find it frustrating?” Those who asked the question probably saw this as a helpful question. It was not as open ended. The question was probably asked with an expectation of an affirmative answer.

Formulating responses

I was not able to relate to the question of frustration. My first time response to the question was, “I’m thankful the injury wasn’t worse.” I had a sense of feeling okay with the need to live with this injury. I imagined how much more debilitating the injury could have been. I felt I was left with a good base to build on.

To my thinking, frustration would be trying to accomplish something and hitting roadblocks. In the initial month of my ABI I wasn’t trying to accomplish anything. I was learning to cope. I was monitoring my progress. I was reading everything I could get my hands on about ABI, mTBI, PCS, PTSD and the rest of the ‘alphabet soup’. I was looking for ways to ease the pain, to manage the disappointment of an aborted career.

New appreciation

Being almost two years into my ABI life, I must say there are many things that I am appreciating. There is much I didn’t realize I had been missing. That might sound strange in light of having experienced significant loss. There are many things over the years that I have overlooked, didn’t have time for, or rushed through. I now have the luxury of time to reflect.

The word ‘contentment’ describes much of what I currently feel. This sense of contentment has spread out into many areas of my life. Living closer to my limits, bumping up against them more often than I would like has left me with a deeper level of appreciation.

Appreciating limits

big-chairI am content because I am less conflicted about receiving requests. I have a much easier time recognizing my own limits.  As a result I don’t need to struggle with the often difficult decision of whether to say ‘no’ or how to say ‘no’ when approached with a request. Previously whenever I received a request and I recognized I had the skills to do it, I would find it very difficult to find a way to say no. I had a hard time assessing my limitations of time or energy. I  would invariably find myself being apologetic.

I have had time to reflect and set personal priorities. Even though my abilities are limited and often short-circuited by neural fatigue or sensory overload, I feel blessed by what I am able to do. I have no room for apologies. I have a stronger sense of being accepted for who I am, not what I do. That in itself is liberating.

Shifted Motivation

I have rarely shunned new opportunities or new projects. The combination of  excitement and a sense of accomplishment along with responding to a need were real motivators. Invariably this would be accompanied by a words of appreciation.

I am content about having time to connect with immediate family and extended family. Seeing the next generation emerging, learning, developing and acquiring a world perspective is exciting. Being part of grand children growing and developing creates a different perspective when compared to my own children when they were that age. A grandparent’s vantage point is so different from a parent’s outlook. Both equally important. Both beautifully different.

I am more content having life slow down. When life is hectic it brings with it an adrenaline rush. A slower life leaves me something to savour. Time to digest each experience.

Evaporated longings

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Brimcomb Ski Hill

I am content with not being able to do various things. Somehow, a strange thing has happened. I can remind myself that I enjoy doing a particular activity. For example snowboarding. I loved it, the crisp air, the thrill, the joy, the abandonment of doing it. Now, I don’t long for it. Somehow I can’t imagine myself doing it. Strangely I don’t miss it.

I am content because I gradually see my horizon of activities expanding. I’m satisfied with small improvements because I see no need to hurry. Last spring I could only bike five kilometers. By September I was able to cover 40 km in a trip. Recently I completed a 50 km trip. I’m not jealous of my pre-ABI ability of biking and unicycling up to 130 km in a day. That belongs to an other era.

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Brechin, Ont

Renewed longings

There are things I long to do. These longings are the things I can envision myself eventually doing. It might be a long and slow road, but the longings grow as I experience healing in certain domains.

I’ve experienced modified success with certain kinds of travelling. I’ve been working through certain house maintenance tasks with support. I’ve been developing greater physical endurance. Each of these changes gradually open up new dreams and longings.

I am content not having to meet very many fixed deadlines. When I experience setbacks and health challenges, the disappointment is not compounded by failing to meet deadlines. I am able to take on tasks that have enough flexibility to not bump me into recovery mode.

More than Math

Has my ABI diminished my quality of life? If it was quantifiable the result might come as a surprise. The experiences of life can’t be reduced to a math equation. Many of the components that define my days or months are there in differing degrees. Priorities have been realigned. The components that define my reality have been assigned a different weighting.

I experience quality of life. I believe the weighted average has gone up.

 

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.

Meeting an ABI veteran

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Bicycle Thief – Halifax

Met Jim the other day. Hadn’t seen him in fifteen years. He probably hadn’t crossed my mind in at least a dozen years. I last saw him a few years after he had an operation to remove a brain tumor. I saw him once in awhile in the first years following his operation, seeing some of his related health issues but never really giving it much thought other than “it must be a nuisance having to deal with the side effects.” I had never really asked him how he was doing other than a question that would illicit a cursory response. And why would he have said more when the question sounds like a casual greeting?

Met Jim the other day as I was biking along at a pleasant clip. The recognition on my part was immediate. I did a wide u-turn and said hello. I was curious if he would remember me. Gave him a few hints. I soon realized I had changed my appearance too much since he last saw me.

Met Jim the other day and purposely took my time to reacquaint myself with him. I was now in a different space in acknowledging his neuro-atypical status. It dawned on me that I was talking with a fellow ABI, an ABI veteran of fifteen plus years.

There was a mutual understanding and a relaxed cadence as we shared experiences. As our commonality dawned on me it awoke my curiosity. Acknowledging his veteran status I was eager to learn more about his recovery and rehab post-operation. Now a distant event for him.

Since I have been working with an OT (occupational therapist) for the past six months I was curious how much OT support he had received. Pre-ABI I would have had no context in which to ask the question. He told me he had received a couple of OT visits. I surmised that an operation for a brain tumor creates damage in a clearly defined part of the brain, anticipating fairly predictable consequences. In my case, having survived a side impact it takes time to determine which parts of the brain have been significantly injured, which parts of the brain have been bruised, while also waiting to see how much and where the healing will take place.

In response to my question, Jim told me he accepted his disability very quickly. The doctors had been very blunt about the damage the surgery would cause. I imagined that following the diagnosis and then the waiting for the operation their had been time to come to terms with his ABI status.

I saw a real contrast in my transition into an ABI status. For me it came as a result of a sudden and unexpected event. Some of the effects of the mTBI appeared immediately, while other effects gradually emerged. At the same time some of the effects gradually diminished. On days that I would experience minimal effects I would believe the ABI was clearing. Other times I would forget that I was living with ABI, till some event early in the day would trigger a symptom. Every time a blunt reawakening.

My encounter with Jim was encouraging in its own strange way. It did not give me a sense that my ABI would necessarily improve greatly. It wasn’t that I could give him some helpful insights from my experience. What was encouraging was the sense of understanding that pervaded our discussion. No lengthy explanation was needed in order for me to understand some of his daily challenges. I found a sense of relief at having someone understand some of my experiences without resorting to lengthy descriptions. It was an experience of empathy underscored by understanding.

Jim is content to stay home. I can relate to him finding large groups disorienting. Trying to carry out a conversation with more than two or three people at a time quickly goes off the rails. Occasionally someone tells him they regularly pray for him. He adamant that he would rather have a person pay him a ten minute visit. It would mean much more to him. I would have to agree with him. Prayer is part of walking alongside someone, a tangible sense of presence. Prayer in a vacuum seems hollow.

As I continued on my bike ride I reflected on our short visit.  I experienced in Jim a sense of calm, a feeling of acceptance. An acceptance of loss with a sprinkling disappointment but no hint of bitterness.

Before I can reach that place of acceptance I need to disassociate acceptance from acquiescence. At this point in my journey with ABI my focus is to expand my horizons, to relearn and do more of the things I was able to do pre-ABI. I have accepted the slowness of the process. Impatience hasn’t been complicating my attempts to expand my horizons. Setbacks happen. I can accept that. I mine those experiences to garner new insights. That’s been a key part of my rehab. I come armed with the new insights to fine tune my next attempt at the activity.

Once I no longer experience improvement, I will hopefully have the dignity to live with acceptance and not view it as acquiescing.

Shelter Valley Folk Festival revisited

20160904_112806One Year Later

What a difference one year can make. Last year I attended the Shelter Valley Folk Festival (SVFF), as it has been our family tradition for almost a dozen years. I was totally blindsided when I succumbed to sensory overload within 30 minutes of settling in to three days of enjoying the music. Exiting from the grounds was a challenge. The sensory overload made walking difficult adding an additional ten minutes of exposure to live music. So much for enjoying a full weekend of music.  …and no refund on my ticket.

Day One

A year later, after realizing a measure of healing, I decided to venture into the live music venue again. I had reason to believe things would go better.  I had made some accommodations. I was rationing the intake of music with the use of custom fitted musician earplugs. Technically the earplugs reduce the sound intensity by 15 decibels. That means less sensory input for my brain to process.  The first evening went well for about two hours. After that I began to get restless, began to lose focus and was feeling ‘zoned out’. That was my cue to head home. Mindfulness in action.

The timing of my decision to go home was prudent. However, the sensory loading of two hours of live music left me wired and out of bed an hour longer than usual. Also, the effects of the SVFF experience disrupted my usual pre-sleep routine. Most notable was forgetting to go through a ‘progressive muscle relaxation’ routine. This resulted in a short night, waking up much earlier than usual.

Day Two

Shelter ValleyThe second morning we once again drove the forty km to SVFF. By the time we had hauled our lawn chairs, knapsack of food and our grandson into the venue I was getting indications of reaching my limit. Having picked up on the cue, (mindfulness in action) I intentionally slowed down my pace for the day. I listened to the music from a greater distance than the night before. I made sure to avail myself of snacks regularly and remain hydrated.

In this manner I was able to take in a second day of music – six hours. No where near the twelve hours of SVFF music that would make up the full day. The part I was able to take in was relaxing and enjoyable.

I arrived home by supper time feeling tired but not overwhelmed.

Day Three

I felt brave enough to attempt day three of the weekend event. The Friday night and Saturday daytime had gone well enough to carry on.

On arriving at the festival, I realized I was not going to be able to relax and enjoy the music. After less than a half hour I wandered over to the display tents. This turned out to be a chance to touch base with people I hadn’t seen in awhile. Great conversations and some caring encouragement. That did more for me than a third day of music, having the music provide a back drop to visiting with artisans and friends.

No substitute

One thing that stands out for me is the difference between live music and recorded music. Pacing myself so as to avoid sensory overload speaks to the vibrancy of live music. Recorded music can not capture the range, resonance and context of music performed for immediate consumption, music that reflects the musician’s connection with their audience. It’s much like there is no effective substitute for visiting with friends, exchanging a hug, the smile, the eye contact and everything else that is part of sharing and being alive.

Music nourishes and revives the soul. Each song finds a place and then gradually emerges at surprising moments replaying some comforting lyrics or simply bringing a sense of wellbeing as the music replays itself.