After 36 years as an educator my career ended due to a TBI. Renewable energy as part of 'walking lightly on this earth' has been and continues to be my interest since my teen years.
Since early 2015 I have been learning to live with ABI (Acquire Brain Injury). I don't want to let my ABI limit the goals I set for myself. I'm living with a different brain, not a lesser brain. In sharing my day to day successes and struggles, I am better able to understand how my life had changed and begin to accept the change.
In sharing my experiences I'm hearing from caregivers and fellow ABI's. I'm encouraged when my experiences are helping others understand some of the complexity of living with ABI.
Time and again I’m struck by the overlap between autism as it manifests itself and ABI (acquired brain injury). Often I can relate to the coping mechanisms that autistic people choose in order to get through the day or deal with a particular environment. One of the coping activities I read about recently is the choice to go non-verbal.
When I am in a social setting I might be verbally engaged for ten or fifteen minutes. When things get too busy, when the conversation wanders and requires more effort on my part I will experience a level of neural fatigue. At that point I will often choose to go non-verbal. I am still engaged with the conversation, but I will begin to conserve my energy and respond by nodding or raising an eyebrow or some other non-verbal cues. Should my neural fatigue increase I will look for an inconspicuous way to exit from the space.
Social interaction requires varying degrees of cognitive functioning. Over time the cognitive demands will create a level of neural fatigue that I need to address. The sooner I acknowledge the neural fatigue and address it the shorter my recovery time will be.
When I’m in a social environment and have reached my limit I need a space that will help me recover. Napping is usually the least helpful option, though spending time in a quiet room is sometimes the best that’s available.
Indoor sounds tend to have an echo or reverberation. The reverberation that most people don’t seem to notice, makes it hard for my brain to relax. Attempts to block out sounds and impressions puts additional demands on my brain.
When I’m outdoors there are so many sounds at a variety of decibel levels. However, it isn’t the decibel level that stands out, but rather the way different sounds flow together. Sounds are somewhat muted in their own ways.
Being outdoors in itself isn’t enough. It’s most beneficial to be away from intrusive mechanical sounds. Mechanical sounds such as commuter traffic, heavy truck, gas powered lawnmowers are jarring. The noise level varies greatly and can be unpredictable and startling.
Being outdoors in a natural environment is the most helpful for recovery. The natural sounds tend to be more mellow than mechanical sounds. However, the call of a crow or a blue jay can be quite raucous. While a heavy truck might create a jarring sound, a screeching brake or an engine backfiring, a crow or a blue jay might initially be raucous, but the follow up sounds as they begin to fade have a predictable pattern.
Sounds in a natual setting can better be compared to a symphony. The sounds have a gentleness to them, they have sense of belonging in that space. It’s the gentleness and predictablity of the sound that allows my brain to relax, to recover from some of the fatigue.
Sounds in nature are somewhat predictable. Each habitat, made up of a certain mix of wildlife, has its own symphony of sounds. The sounds have their own cadence as the sounds modulate, changing in intensity or volume. At the same time the sounds are not repetitive. That also contributes to a more restful state.
Natural sounds for Neurotypical people
A study was done some time ago to measure the benefits of walking to reduce stress. One group was assigned to walk for 20 minutes a day along city streets. The second group was assigned to walk for 20 minutes in a park or nature preserve. The study concluded that walking in a park or nature preserve had a much greater impact on lowering the level of stress than walking along a city street.
Sometimes I find that my ABI sensitivities can be used like a ‘canary in a coalmine’. I develop habits or find environments that are critical to my quality of life and my ability to recover more quickly. What is critical for me to function better, often are the same habits or environments that are helpful in improving other people’s quality of life.
Having lived with ABI (acquired brain injury) for almost three years, learning to pace myself has been one of the most important things I need to be mindful of. As long as I am reasonably mindful of how much I take on, or what emotional loading I expose myself to, life can be manageable. In fact, life can be very enjoyable a majority of the time.
The last while, which includes Christmas and New Years, I have been over taxed. I say “the last while,” but I have lost count. It’s just been too long (I haven’t posted since mid December).
I have been struggling with a plurality of physical challenges. Having dealt with chills, aches and pains while feeling nauseous had me wondering whether I was just simply dealing with a flu. It would seem easier if it was the flu. However, the way the symptoms persisted and varied, I knew it wasn’t the flu.
At other times I was dealing with vertigo, blurred vision, coordination challenges, acute headaches, extreme exhaustion, while unable to sleep. In an other life I would have wondered whether I was experiencing stroke symptoms.
I wasn’t sure what to do. I was urged to see my family doctor. I figured there was no point going to the family doctor, because there just didn’t seem anything concrete enough to expect a helpful diagnosis. Being told to rest and drink plenty of fluids just wasn’t worth making an appointment and getting myself into town.
A couple of days ago I went to my regularly scheduled reflexology appointment. I was feeling good enough to make the 45 minute drive on my own. I gave myself plenty of time so I could pull over for a nap if I needed to.
As my treatment got underway, the reflexologist asked me how I was doing. With Christmas and New Year’s just behind us, she was expecting an upbeat answer.
I first mentioned the various physical challenges I had been experiencing for far too many days. I then mentioned that a dear friend had been killed in a traffic accident on December 21st.
That changed her approach. She recognized the various physical symptoms as a strong indication that my body was in shock. My physical care had been seriously disrupted as had my emotional well being.
The suddenness of the news initially made it seem unreal. The flash back to my own accident was not helpful. And the inability to pace myself while grieving left me very vulnerable.
The funeral service was scheduled nine days after the accident. I usually have a hard time getting through a worship service without a break or two. I did not and could not remove myself from the funeral service. I also wanted to accompany my wife as she had agreed to share some thoughts and memories during the service.
After the funeral service was over my wife asked if I felt up to attending the internment. That wasn’t the question for me. I was focused on the need to attend. I was looking for closure and hoped that participating in the internment would help. The internment was more difficult than I expected. At one point it took all of my will power to not collapse.
Maybe I shouldn’t have attended the internment. It’s hard to make proper decisions in a situation like that. I probably would not have heeded any advice given to me.
Looking for Recovery
Having learned to accept sensory overload as part of living with ABI, I knew I could expect to need up to four days for recovery. That usually allowed for enough time for recovery. That was usually the price I paid for not removing myself from an environment that was causing me sensory overload.
Grieving seems to override any attempt at self-pacing. My physical symptoms persisted as I struggled with the emotional overload. And not surprising, the emotional overload did not end with the internment.
A clear challenge with ABI is having a hard time filtering impressions and emotions. I have gradually experienced some improvements over the past three years. I no longer need to pull over while driving when a touching story is being shared on the radio. I have since had a dental experience without needing four days to recover.
The intensity of losing a friend so suddenly is much more challenging than the other experiences of sensory overload. While grieving the loss of a friend it’s not possible to remove myself from the ‘overload’ environment.
The support and care of friends and family has been most helpful. Knowing that other people, even if they don’t fully understand, showing patience and care, helps keep things from becoming overly complicated or causing a downward spiral.
What is Your Only Comfort in Life and in Death
I was brought up knowing life is finite. I was also raised with the following understanding:
That I with body and soul, both in life and death, am not my own, but belong unto my faithful Savior Jesus Christ; …and so preserves me that without the will of my heavenly Father, not a hair can fall from my head; …
Heidelberg Catechism Lords Day #1
Knowing where to search for comfort helps to forestall hopelessness. Knowing is one thing. Being able to live with what one knows sometimes takes time. Gradually my body is catching up with me.
I had two friends come over recently to help me assemble a project. It was a job I could not do alone. It was a job that was easier and therefore safer to do with three people.
I wasn’t sure how doing this job with three of us would go. I know that working alone is cognitively less demanding and therefore helps minimize neural fatigue.
The last time I had done a project with two other people neural fatigue had totally exhausted me after about two and a half hours. That was including the coffee break.
Necessity made me move ahead and invite two friends over. From a cost benefit stance I was okay with needing time to recover from the work party. They didn’t arrive very early so I had time to have everything prepared. I had set out the necessary tools. I had also thought through the process so I was clear that with the three of us the job would be very manageable. There were several things I had overlooked, but that is no surprise.
When the job was done, we stopped for lunch. One friend commented that he was surprised how well I was doing. In truth I was pleasantly surprised as well. We had been working for three hours without a break. Even when I sat down to relax the neural fatigue did not catch up to me. A second pleasant surprise.
So, what made the difference? I have some thoughts on the matter. I should because that’s one of the goals of working with an OT (Occupational Therapist). She is training me to be my own ‘detective’ in figuring out what factors work for me and what factors push me to my limit.
There is one key difference between my experience helping my friend at the outdoor education centre and this recent experience. Helping at the centre meant I had to get myself up to speed on the nature and scope of the job when I arrived on the site. This recent job was my project. I had gradually developed an overview of how I would use my volunteer help. I had several days to get the whole process figured out and was ready for it. My brain was on track and barring any unexpected changes, my lack of mental flexibility was a non-factor.
The Day After
The next day I went to check that the walls were level and squared up with each other. To my dismay the front wall was about an inch over from the back wall. Eventually I managed to get the wall moved after dealing with the steel pins that ran through the bottom plate and into the concrete. Two hours of problem solving left me totally exhausted. Enough for one day.
The next day I realized that even though the bottoms of the walls were squared up with each other I could not assume that the top of the walls were squared up. When I check I was out more than I want to admit. Some more problem solving. The challenge was to figure out why the tops of the walls didn’t line up. After about two hours of attempting different things I succeeded in getting everything squared, and level. Once again I was totally exhausted. Two days in a row of reaching my limit. I did not want to experience that for a third day.
Assembling the walls and making sure a measurements are accurate takes some attentiveness. Though not as cognitively demanding as problem solving how to get things squared and level. I was reminded to be prepared for dealing with certain parts of a project to be neurologically fatiguing.
The challenge is to minimize the need to correct errors. While that is the ideal, the reality is usually different. With some of the deficiencies that come with ABI errors are very likely to happen.
Despite some push back on my part I have been convinced to request the help of a rehab assistant to help me develop strategies and organization skills to reduce errors and other disruptions while working through more complex projects.
Being the boss is helpful for some aspects of a project, but it does bring it’s own challenges.
I’m nearing the end of my third year living with an ABI (Acquired Brain Injury). Over time I have be able to recognize and tune into about a dozen signals my body gives me when I’m nearing the limits of my sensory loading.
Within the context of dealing with sensory loading, often someone will ask how I’m doing. When casually meeting someone it varies how I answer the question. My answer would be ‘fine’ if I considered the question a greeting. My answer would involve greater or lesser details if it was a question about my well being.
When someone is asking about my well being a succinct response would be easier. I usually respond with varying degrees of detail. A brief response would be easier and more helpful.
Stop Light Metaphor
I have been thinking about it using the image of a stoplight. Using a three colour response has it’s benefits. As a thumb nail-type of overview it is short and to the point.
When I’m operating in the Red zone it’s a clear message that I’m near my limit or into overload. I’m unable to make casual comments. My neural fatigue interferes with my brain’s ability to properly process what I’m hearing, seeing, smelling, or tasting.
When I’m in the Red Zone my body simply reacts to outside stimuli. When something unexpected happens I react. The reaction is triggered because I can’t anticipate the sudden change or some danger that suddenly appears. In the Red Zone I am easily startled. In some environments, depending on the frequency of being startle, it will compound my neural fatigue.
Along with not processing sensory input very well, my response lacks coherence. In responding to others my thoughts are not very well formulated. I also find myself going onto momentary tangents, a diversion from the flow of the conversation. If I’m responding to a direct question I might miss the main intent of the question.
When I’m operating in the Red Zone physical touch can range from very painful to uncomfortable. The pain can best be described as a burning sensation.
When I’m operating in the Red Zone I regularly find myself humming. Nothing melodious – it’s a tuneless hum.
When I’m operating in the Yellow Zone I’m able to make coherent comments in response to what’s happening around me. When I’m in this zone I’m processing conversation and other sensory input with reasonable clarity. However, in this zone it takes too much neural energy to initiate conversation.
When I’m in the Yellow Zone I’m more aware of what is happening around me. That means I’m planning ahead and able to anticipate. As a result I’m not as easily startled by sudden noises, unexpected touch or other changes around me.
In the Yellow Zone I will find myself involuntarily humming as well. When I’m in this zone the humming will be a recognizable tune.
When I’m operating in the Green Zone I am able to initiate conversation. My responses are much more coherent because I’m able to take in what’s happening around me; the sensory input is making sense to me.
When I’m in the Green Zone I will catch myself spontaneously whistling a recognizable tune. That also serves as a reminder to me that I’m doing activities that aren’t pushing me to my limit. It’s also an indicator that I’ve cleared the sensory accumulation of the previous day or previous days.
Using the stoplight metaphor is giving me a better gauge on how my sensory loading that day is being managed.
Even if I don’t respond to greetings by announcing one of the three colours, it does increase my mindfulness. That is one small way in which it’s good to be around other people even if I’m not functioning in the Green Zone.
When I’m in the extreme end of the Red Zone I’m not able to respond to direct questions. That’s because I’m struggling to understand the question, I’m struggling to think of a coherent response and I’m not able to formulate the words. I am able to nod or shake my head in response to appropriate questions.
I’ve considered wearing coloured wrist bands, a red, yellow and green one. It would be kind of like a medic alert bracelet. In extreme situations I could just point to the red wrist band. For this to be helpful I need two messages on the band. “I am not in pain,” and “I just need a quiet place.”
I have an idea that many non-ABI people would want one of these wrist bands. Just to give a subtle message when everyone around you is clamouring for your attention; kids, co-workers and…
Recently I was recalling the Canadian prairies segment of the Sea to Sea cycling trip. We had been experiencing headwinds and crosswinds at a much greater rate than tailwinds.
Each morning the chaplain had prayed for favourable winds to help us reach our next campsite without encountering undo hardship. We had arrived the day before in Chaplin Saskatchewan having battled headwinds and crosswinds on what had been a long haul.
That evening we welcomed a lone, self-supported cyclist to join us for supper. He gladly accepted. Just one of his many pleasant surprises he had encountered after several years of enjoying life on the road.
The next morning our chaplain was ready to share a prayer with the 70 cyclists. He paused for a moment to contemplate the situation. How was he going to pray for favourable winds. We were cycling east while our guest was going west. We had a long day ahead of us to get to our pre-book campground. So, what to pray? The chaplain shared his prayer as a general petition for favourable winds and said, “We’ll let God figure it out.”
As this prayer was offered I was squirming a bit and feeling uneasy. Praying for favourable winds felt like we were sending God a Santa Claus gift list. It’s bringing our narrow desires for the day before God. Our narrow desires when there are more significant matters to pray for.
Being in a group of 70 cyclists, it wasn’t essential to have a tailwind. Rather than trying to bias God to send us favourable winds, maybe we should be praying for the cyclists as a group. In praying for success for the cyclists let’s pray for a spirit of cooperation and teamwork.
As a group we had the opportunity to cycle in a pace line. By riding in a tight line of, for example, six cyclist each cyclists would pull for a minute or two and then have an easier time drafting while the other five cyclists took their turn at the front of the line.
On the other hand, the lone guest would be out on the road with simply his own means to reach his goal for the day. He did not have any team members who could work with him.
The other side
Then I come across the verse listed below.
23 In that day you will no longer ask me anything. Very truly I tell you, my Father will give you whatever you ask in my name.24 Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete.
John 16:23-24New International Version (NIV)
So what does it mean to ‘ask in my name’ when praying? How does that create a context for what we ask for? Is anything too trivial to ask for in prayer?
I don’t have additional insight into those questions. Yet somehow, I think we need to consider whether our prayers are self-serving or whether we pray in such a way that the answers to those prayers bring honour and glory to God.
In the end I think we should have prayed for the needs of the lone cyclist. However, did we know him well enough to determine his needs.?Maybe a headwind was fine because he hadn’t intended to go very far that day.
If nothing else, the chaplain’s prayer in Chaplin Saskatchewan did get me thinking about how we pray and what we pray for.
Had an invitation to visit a friend for his birthday recently. Since it was Sunday morning I thought it would make sense to make the 45 minute drive and attend his church.
The church, not being a typical protestant church, meets in New Stages Theatre. Rather than the usual parking lot with an obvious front entrance this worship space was in the downtown area. After making two U-turns I located the correct building. Then I made sure it was actually free parking on Sunday. I made my way to a somewhat obscure entrance. I say obscure because there was no signage and the entrance was on a different street than the official address.
On entering the building I had a choice of climbing the long stairway or riding the elevator to reach the main floor.
I exited the elevator as it opened into a reception area. There were a few people helping themselves to some coffee and a snack. I noted that the bar at the far end of the reception area was closed. (wrong day I guess.)
I walked around, checking out the layout of the space and briefly acknowledged a few people who greeted me. I didn’t have the energy to engage in conversation but knew how to be brief but reasonably polite. I wandered into the worship area with its subdued lighting and sparse setup. There were a few microphones, a music stand with a laptop and a screen that read “Eschatology”. I assumed that was the topic for the day. There were a few parishioners who had already made themselves comfortable in the cushioned seats.
I walked back to the reception area to help myself to a cup of tea and a snack. As my friend was ready to enter the worship area I decided to follow. As I approached the seating area I became acutely aware that my sensory loading had been building. In the ten minutes since entering the building my ability to function had gone into a quiet but steady downward spiral. I stepped out for a few minutes. When I returned I sat off to the side in the shadows and out of sight.
My attempt to be inconspicuous was briefly interrupted when the pastor walked over to me and welcomed me to the service. I nodded a polite acknowledgement.
In the next 15 minutes my sensory overload settled down enough that I could take in some of what was happening. After focusing on the worship service and participating in the singing, things seemed to be going better. The small group of people and the single guitar made the singing have a settling effect on me.
Shortly after the singing was done I wasn’t able to take in anymore. My earplugs which are meant to tone down sounds had a cocooning affect. I ended up napping for about 20 minutes. (Did I mention the seating was comfortable?)
As the worship time ended I knew I was in no condition to socialize with anyone. I quickly made my way down the long flight of stairs and waited at the bottom till my friend was ready to head home.
The worship experience totally blindsided me. The week before was the first time in almost three years that I had actually made it through the whole worship service. It was a real accomplishment which left me with a stronger sense of inclusion. The singing last week had not pushed me to a point of sensory overload. I had been able to focus on the different parts of the liturgy. I had come away from there with sense of achievement.
So why had today’s experience put me into sensory overload? Yes, and most of it happened before the worship time even started? It wasn’t simply a matter of making it only part way through the service before I needed a break. Needless to say, the experience was a disappointing setback.
I have been advised to consider the broader context when I experience a set back. Sensory overload doesn’t just happen. There are certain experiences that will bring on sensory overload gradually. There are other experiences that will suddenly trigger sensory overload. I should point out that the 45 minute drive to the church did not meet either condition for bringing on sensory overload.
The broader context would be to look at what was happening in the days leading up to the Sunday. What did I do Thursday? Did Friday’s activities contribute? Did Saturday’s activities exacerbate my sensory loading? Had there been time to reduce some of the neural fatigue the accompanies sensory overload?
In hindsight I had been processing two emotionally charged events that added significantly to my emotional sensory loading.
On Saturday I attended the November 11 Remembrance Day ceremony. The last two years I had attended the ceremonies in the city. Last year I had fared better during the hour long ceremony than I had the year before. (I’m seeing gradual progress.) This year I attended the ceremony in our hamlet. The cenotaph is around the corner, less than a kilometer from home. Being a small hamlet the Remembrance Day ceremony ran much shorter than in the city.
Despite the shorter ceremony, the remembrance of lives lost and the loss experienced by so many families set me back more than I expected. The local cenotaph is more personal. I counted over 300 names inscribed on the monument, representing soldiers who died in World War I and II. The names are soldiers from our township who served. While the current population is 18,000, it would have been less than a quarter of that at the end of WWII.
After the ceremony I drove home and did some yard work for a couple of hours. Cleaning up and getting things put away is a physical activity with low cognitive demands. Along with being outside that should have helped reduce the sensory loading somewhat.
On Friday I had lunch with some former colleagues. These occasional lunches are enjoyable and an opportunity to catch up on what people are doing. The setting is relaxed, with no one in a hurry to leave.
A significant part of Friday’s lunch was being a support for a colleague who had recently buried her spouse. Sharing in her loss and that of her young sons meant I would need some time to let some of my sensory loading dissipate. Biking home after the lunch helped bring some immediate relief. But I should realize by now that I need more than a rhythmic physical activity like a 50 km bike ride to properly recover.
Planning and Scheduling
In hindsight, it was obvious to me that I had scheduled too many activities on consecutive days that contributed to my sensory loading. If I were to do it over, I would schedule at least one recovery day between each event. That’s how it would work in an ideal world.
In reality I did not know what to expect at the Friday lunch. I did anticipate the sharing of loss at the Friday lunch, but that definitely wasn’t a reason to stay away.
However, I have been reminded of the need to plan for the worst case scenario. Well, that’s fine, but the next day, Saturday, was Remembrance Day. I thought it would be a dishonour to the families of the fallen soldiers to not attend. Besides I had modified my attendance by going to a shorter ceremony. In that way I had made accommodation hopefully reduce a worst case outcome. I realized afterwards that shorter doesn’t necessarily reduce the emotional impact.
Even though I had two emotional events in two days I didn’t realize what impact it was having on me. I had done outdoor physical activities in between. That has always been helpful in reducing my sensory loading. So, how could I have anticipated that my worship time would expose my sensory overload? My best guess it to realize the accumulative effect of back to back emotionally charged experiences. Why is learning new things so hard to put into practice?
Nevertheless, I decided to visit my friend anyway. I wasn’t just a casual visit, it was a birthday, not something you can take a rain check on.
The visit required some significant accommodations. I managed to find a quiet place. I managed to nap for close to an hour. After my nap I chose a room where there were only a couple of people.
At first I participated by simply nodding and acknowledging the conversations. Gradually I was able to participate and initiate conversation.
I was able to enjoy the visit because my friend understands my needs. No one was insulted that I needed a nap. No one pushed themselves on me to engage in the conversations.
In the end I was glad I not abandoned the idea of visiting. It would have been lonely and disappointing to have gone home rather than visit. It’s not always an easy call to make. It helps when I am with people who know me and have shown understanding in the past.
It’s not a matter of “hit and miss”. The recent experience was a clear reminder that I need to pace my self and monitor my sensory loading. Most significant is the cumulative effect of back to back experiences. Even if my body didn’t give me signals, previous experience should have alerted me. But then there is always the somewhat unreasonable hope that my ability to handle sensory loading has significantly improved.
You can’t rush recovery, just like “you can’t rush good wine.”*
Every day when I arrived at work I would park my car near the newspaper recycle bin. I would take a minute or two to clean up stray papers that had missed their target namely the paper recycle dumpster.
One particular morning I nonchalantly opened the lid to throw some paper into the bin. Instead of seeing newsprint and bags of shredded paper I found myself looking at a body. A body with an ashen complexion. A body with disheveled clothing. My first thought was, “This is a crime scene or the unfortunate death of a street person death”.
A moment later I was startled to see the body move. Slowly a thirty-ish young man sat up. My puzzlement faded into relief. Relief that this was not a crime scene.
On second look I had the impression that the bags of shredded paper might actually be comfortable. Definitely more comfortable than many places I’ve seen street people spend the night.
I was rather disoriented and so the only words that came out of my mouth was, “You don’t need to hurry. If you want to sleep for a while, go ahead.”
Instead he quickly scrambled out of the bid and headed down the sidewalk hoping to avoid any extra attention.
I realized later that it would have been more appropriate to have offered him a cup of coffee or my lunch to take with him.