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

2014-skiing-at-brimcomb
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.

bike-7
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.

 

Author: Jasper Hoogendam

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.

9 thoughts on “Quality of Life”

  1. “When life was hectic it brings with it an adrenaline rush. A slower life leaves me something to savour.”

    Favorite line.

    Time provides a context doesn’t it? I’ll think twice about asking a less open ended question to people with disability. Thanks Jasper for sharing!

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  2. Appreciate your musings again ,Jasper….thanks…especially liked the notion of “having no room for apologies” and then feeling liberated by a stronger sense of being accepted for who you are , not by what you do. Alida

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  3. Jasper, I love the way you organized this post. It reminds me of the verse, “I have learned the secret of being content in any and every situation…” (Phil. 4:12) I have often said that there is the Gift of Suffering. We mature in ways that would not have likely happened without our trial and tribulations. Eventually, our suffering leads to hope.

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    1. I like the phrase “Gift of Suffering”. When one is hit with a major turn in life that brings suffering, the discovery that awaits is like a wrapped gift that is a mystery till it is opened. An apt verse, discovering what the new reference for contentment looks like.

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