Walking More Than a Mile in Different Shoes

Compost Heater Prototype
Compost Heater Prototype

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Author: Jasper Hoogendam

I have been working in the field of elementary education since 1980 till 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). 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.

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