Dystonia
Articles

My South Africa

Jean, our daughter, insists that I join her family for Christmas while my wife is in Cape Town with our other daughter to look after her two small children while she is at work.

On the appointed day, Tuesday December 19 2023, I am ready, waiting for Jean to fetch me.

I am both excited and fearful. Excited because I will be spending Christmas with my loved ones, and fearful because of the uncertainty whether or not I will cope. For the past 12 months I have been struggling with a health challenge called dystonia. It is a neurological condition similar to Parkinson’s disease, and manifests itself in the form of involuntary muscle contractions in my neck and shoulders These are accompanied by persistent, often severe pain. I am also aware that other people notice my head shaking.

Jean’s family moved into their newly built house on December 1 2023 – only 18 days ago. For them it is the fulfillment of a 10 year long dream. They are delighted to be in the new house, despite the fact that there are still many things to be sorted out, such as installing drainage pipes on the front lawn to eliminate the possibility that in the event of heavy rain the water could flow through a portion of their precious house.

Soon after our arrival at Jean’s place my fears become a reality. I wake up in the middle of the night with excruciating pain in my neck.

Jean sees the anguish on my face in the morning. Without hesitation she makes an appointment with a physiotherapist at nine o’ clock. The physiotherapist listens attentively to my dystonia history and then proceeds to massage my back and neck, bringing significant relief. She patiently answers all my questions regarding treatment options to help me cope.

On completion of the physiotherapist’s intervention Jean arranges for me to have a neck X-ray at the nearby hospital to ascertain whether or not the pain could be the result of degeneration in my neck. Both the receptionist as well as the radiographer are very polite and respectful. As they perform their functions, I feel their genuine concern to do whatever they can to ease my suffering.  

As I wait at the hospital for the radiologist’s report, I am greeted cheerfully by people walking past.

Jean has gone to a pharmacy to purchase some pain killers, as well as muscle relaxants for me. I cannot help being impressed by the courtesy of all the hospital staff with whom I interact. This helps me to forget my pain and see the beauty of these friendly people.

Back in Jean’s wonderful new home I take the first doses of the medication that she bought for me. I immediately feel much better. That night I sleep, probably the first time in 12 months, without waking up from severe pain. Jean’s thoughtfulness, and her prompt action in taking me to the physiotherapist, arranging a neck X ray and purchasing appropriate medication gives me hope that I can start looking forward to a relatively pain-free future.

Reflecting on my journey with dystonia and the amazing intervention of Jean and the medical personnel that brought me hope, I cannot help noticing the similarity between my struggle and that of our people in South Africa to build a nation that lives in harmony and mutual respect, since the achievement of democracy in April 1994.

It has been a difficult road.

We were on the brink of civil war. We have come from a legacy of mistrust and alienation, much of it the product of the divisive policy of apartheid. We did not understand one another and found it difficult to talk with each other. We were lost, wondering how we will ever learn to trust each other. We were obsessed with plans how to protect our own belongings and safety.

Our leaders have had to learn how to utilize the bountiful resources in our land for the benefit of all our people. Much of their efforts have been focused on negating the effects of the separate development legacy in our country, with limited success. We are still struggling to build an inclusive society where everyone feels valued. As a nation we are far from achieving that ideal.

The disease that hinders our progress is one that resides in everyone’s heart. It is called selfishness. This disease does not only wreak havoc in our own lives – it alienates others, breeds hatred and destroys relationships.  

What I experienced that day showed me that this disease of selfishness can be overcome.

The people with whom I interacted that day acted from a different mindset to thinking of self first. The kindness shown to me by my daughter, the physiotherapist and all the staff at the hospital gave me the hope that I will be able to cope with the debilitating disease dystonia. They were open to listening, understanding and seeing how they could make their talents available to bring relief to my suffering.

That day I made a renewed commitment to listen, understand and be available with whatever I have, to anyone I meet, whether they need my talents or not. In my South Africa there are many people who share the same goal, and they have succeeded to make it a reality.

Wolfgang Bernhardt is an engineer by profession. His passion is empowering professionals to achieve outstanding project execution.

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