We all want to live lives that are worthwhile. We like to measure ourselves on how worthwhile we think we are. Our measures of worth tend to include our qualifications, the work we do, our achievements and our strengths - physically, mentally, and emotionally. When we look at one another we tend to compare the other person to ourselves. We often value our own worth by how we compare to others. And when we first meet the quadriplegic person that we have to rehabilitate or care for, we say to ourselves; “Ag shame, you poor thing…”

A few weeks ago I attended the Southern African Spinal Cord Association’s biannual congress. There were many case studies and inspiring presentations on bravery and innovation and beating the odds. Some presentations were philosophical, many were academic and a few were highly practical. However, for me one presentation stood out above the rest: a talk by Jeff Blackmer of the Canadian Medical Association. The title was “Quality of Life – Ethical Considerations”. It is a wide topic that was covered comprehensively, but in the talk he described a study that grabbed my attention and prompted me to write this article.

The talk started with how we measure quality of life; what contributes to a person’s sense of wellbeing – emotionally, socially and physically. Factors such as our physical abilities, our expectations for our lives and our own happiness and satisfaction with our ability to realize these expectations, were covered.

And then came the highlight of the talk - a study of self esteem ratings relating to persons with severe spinal cord injuries. There were a series of statements on self-esteem that included; “I feel that I’m a person of worth”, “I feel I have a number of good qualities” and “I’m satisfied with myself as a whole”. But there were also statements on negative self-perception; “I feel sometimes that I’m a failure”, “I feel useless at times” and “I do not have much to feel proud of.”

First off the people that were treating the SCI patients (Physiotherapists, Occupational Therapists etc.) were asked to answer these questions about themselves. Then they were asked to answer the same questions on how they believed their SCI patients felt about themselves. Lastly the SCI patients were asked to evaluate themselves on these questions.

The results were fascinating. The people that were treating the SCIs were very positive and upbeat about their own quality of life, but significantly down-scored their SCI patients. But when it came to the SCIs’ opinions of themselves, they were equally positive and upbeat about their own quality of life. They were realistic in that the negative questions tended to score higher, but that did not detract from their overall sense that life was indeed worth living – they felt that it was good to be alive!

What is the message in this for us as caregivers of SCIs and other afflicted persons?

Quality of life is not determined by our circumstance, by our physical abilities and agility, by our intelligence or our talents or our wealth. Quality of life is determined by how we respond to our circumstances. The world is full of people that have nothing but that are exceedingly happy. There are also a multitude of examples of people that seem to have it all, yet are unhappy, disgruntled and miserable.

If we respond to those that we care for in an “Ag shame” manner, doing everything for them – even the things they can do for themselves; if we approach them with an attitude of “You are disabled so you cannot…” we will work against their self-esteem and push them down. In the previous edition I wrote about winners. We must recognize that all SCIs that made it through rehab and are now in a position to return to Life, are already winners. As caregivers we need to realize that while we are employed to care for the physical needs of our SCI wards, by helping them to build their self-esteem, by challenging them to actually do those things that they are able to do, by encouraging them to stretch themselves, we are by these simple deeds helping our employers to build self-esteem, to rediscover meaning and to celebrate the victories of life, doesn’t matter how small. We will then help our employers to become winners and all together we will become a winning team.

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