Dawid van der Merwe Dawid van der Merwe

LOVE & death: when your body no longer represents your essence

Love and death: When your body no longer represents your essence…

In the quiet corners of a small seaside town, nestled between rolling mountains and the sea, there lived a man named Adam. Once, he was the master of his universe, figure of vitality, a man whose laughter could light up a room, whose soft eyes spread joy, and whose hands crafted beauty. He pride himself on living a useful existance, a nett producer of services and things of use. But as time wound its relentless path, Adam found himself locked in a battle he never asked to join: Parkinson's disease.

It began subtly, with a tremor in his hand that danced like a leaf caught in an autumn breeze. At first, he brushed it off as mere fatigue or the toll of aging. Yet, Parkinson's cared not for his denial; it crept into every facet of his life, stealing his ease of movement, his independence, and eventually, his economic freedom.

His days became a procession of struggles. Simple tasks, once taken for granted, now demanded Herculean efforts. Each morning, Adam faced the arduous task of dressing himself, his fingers fumbling with buttons and zippers as if they were foreign objects. The once-steady strokes of his paintbrush now trembled upon the canvas, betraying the artist's hand. He retreated to a life in exile wanting to protect his family from being the burden he thought he would be. He was proud…

But it was the nights that weighed heaviest upon him. As darkness descended, so did the demons of his disease. His muscles, once supple and strong, now twisted and contorted in agonizing spasms. Sleep became a distant memory, a luxury he could no longer afford. Instead, he lay awake in the suffocating silence, counting the seconds like a prisoner marking the passage of time.

In those long, lonely hours, Adam found solace in memories of a life well-lived. He recalled the warmth of his wife's embrace, the laughter of his children echoing through the halls of their home. But even these precious moments were tinged with sorrow, for they served as stark reminders of all that Parkinson's had stolen from him, slowly stripping away everything that makes him, him, everything that makes up his essence.

As the days stretched into weeks, and the weeks into months, Adam found himself facing a choice no man should ever have to make. He watched as his world grew smaller with each passing day, a prison of flesh and bone from which there seemed no escape. He became obsessed with not being a burden to his family and productive society, and started to isolate himself from his family and loved ones even more. And in the depths of his despair, he found himself planning for release. He started investigating exit bags…

And then God took a rib and made him an Eve, an angel personalised just for him, for his exclusive use. To pull him from the wreckage of his silent reverie, to wrap him in her wings, and let him find some comfort there…

Fast forward some ten maybe twenty years. It was a quiet evening when Adam broached the subject with his family, the words heavy upon his tongue like stones sinking into still waters. He spoke of his pain, of the unbearable weight of living with a body that betrayed him at every turn. And though their eyes brimmed with sadness, they understood.

Together, they embarked upon a journey fraught with heartache and uncertainty, a journey that would lead them to the doorstep of a controversial choice. They sought the counsel of doctors and specialists, each offering their own brand of wisdom and guidance. But in the end, the decision rested with Adam alone.

And so, with a heavy heart and a soul weary beyond measure, Adam made his choice. He chose dignity over despair, peace over pain. He chose to bid farewell to a world that had grown too cruel, too unforgiving. And in the gentle embrace of his loved ones, he found the courage to let go.

On a bright spring morning, with the scent of blossoms lingering in the air, Adam closed his eyes one final time. He felt the warmth of the sun upon his face, heard the soft murmur of voices that had accompanied him through a lifetime of joy and sorrow. And as he slipped into the waiting embrace of eternity, he knew that he had found his peace… his dignity…

For Adam, the journey was over. But his legacy endured, a testament to the resilience of the human spirit in the face of unimaginable hardship. And though his body lay silent beneath the earth, his spirit soared free, a beacon of hope for all who dared to dream of a world where pain had no dominion, and love knew no bounds...

South Africans suffering with a terminal illness deserve better end of life choices.

We all do!

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Dawid van der Merwe Dawid van der Merwe

The dieter harck story

The poignient story of Dieter Harck and his brave struggle with Motor Neuron Disease.

The personal story of Dieter Harck

Dieter Harck’s laugh is contagious. It bubbles up from deep inside his heart and explodes to the surface with life-giving joy. The sound of it infuses you with memories of childhood awe. Like experiencing special things for the first time. It’s a sound that exposes the small details we so often overlook in the busyness of everyday life. The sound that makes us notice what really colours our existence with beauty and meaning. Like sunsets and sunrises, the way our dogs’ tails wag when they see us. Or the way freshly baked bread smells but to name a few things relating to the life of this special man.

Dieter is 73 years young and started suffering loss of feeling in his limbs, declined coordination, difficulty of speech and exhaustion as a constant companion in 2011. After various diagnosis, he was finally diagnosed with motor neurone disease (MND) in 2013, an untreatable condition with the certain outcome of suffering and death in a relatively short period of time. At the time of his first diagnose in 2011, he was given 2 to 5 years to live.

But like most things, the end makes more sense from the beginning. Talking about dying isn’t easy. And watching someone you love die is most likely one of the hardest things to face. Perspective and relationship also frame our personal stories much more accurately. Eleven years into Dieter’s story, he has still not written his final chapter.

Chapter 1 for Dieter started on the 9th of May 1949 when he made his entrance onto humanity’s stage as the third child of 4, born to parents of German decent, then living in Namibia. He recalls the 9 year gap between him and his oldest brother due to his father’s incarceration in a Prisoner of War camp before the start of WW2 After matriculating, he enrolled at the University of Pretoria and obtained a BA Degree majoring in Physical Education and German. “Having participated in competitive sporting activities throughout my life, I understand the value of planning, preparation and systems as well as the appreciation of self-discipline to achieve results.”

He then completed a Higher education degree and started working at the German School in Pretoria. Not satisfied with what the education system’s compensation promised and with a deep desire to not only educate but empower, he entered the Real Estate Industry in 1983 and quickly made his presence felt culminating in being a Broker/Owner of REMAX One Hundred, a franchise office with between 15 to 20 associates and agents.

In 2011 he was nominated as the Broker/Owner of the year. Ironically, it was the same year an old sport back injury, which he was operated for in 2010, lead to his first consultation with a Neurologist. Initial treatment relieved the symptoms of lameness in his lower limbs but was aborted after the third cycle. A family friend medical practitioner recommend a second opinion and in 2013 it was confirmed that Dieter indeed was suffering MND.

By then, exhaustion already caused Dieter to rest for 8 to 9 hours every day. His physical deterioration also progressed steadily and fine motor activities became a major challenge. Chewing and the movement of his tongue and facial muscle combined with increased saliva production lead to drooling, violent coughing episodes and choking. His voice started slurring to the degree that he had great difficulty communicating, specially in a business environment.

The upside then was that his deep depression that started in 2012 because of the illness was successfully treated with anti-depressants. He however he still recalls how horrifying and frightening it initially was accepting an irreversible condition leading to a certain death, mingled with the hope that a cure might be found. The long and heavy depression often brought up thoughts of suicide as life seemed to have become without purpose. The hardest challenge was giving up all hope of participating in the dynamic, physical activity he so enjoyed. Another blow to his sense of loss of purpose came in 2015 when he was forced to sell his business playing havoc with financial implications for the future.

“From walking unsteadily, I could now only walk with a walking stick and only with extreme focus on the surface. I would often stumble over the smallest of objects and falling was hard and uncontrolled. My eyes were always directed downwards, not being able to observe my surrounding and making me feel extremely vulnerable. The dependence on someone for assistance lead to extreme frustration and initially was very hard for me to accept.”

Being dependant on the assistance of others is hard for most people. Dieter still struggles with this. “I am acutely aware that my condition deeply effects my partner Lynne emotionally and physically. In many ways my suffering is also her suffering. Our dreams and plans are affected, especially financially and personally.”

Yet very little, certainly not MND, keeps a good man down.

Dieter counts himself lucky because his condition is reasonably stable. He has found tremendous support from a local MND support group. These peoples’ understanding of the illness is as deep as his and in many cases their experience and suffering surpasses his own. Several acquaintances and friends have since passed on, not always peacefully or without suffering.

“I have also chosen moderate activity and good nutrition as my treatment option having been active all my life. Initially I could only maintain 3 minute sessions on my stationary bicycle. I have managed to gradually increase this to 15 min followed by stretching and flexibility exercises for another 30 min. I do not take any medication and use only nutritional supplements.”

There have been many defining moments in Dieter’s story, all starting new chapters. A significant one was meeting the palliative medical practitioner who treated his partner Lynne’s elderly mother and discussing suicide. Another was when Lynne ask a young lady in the final stages of MND what she feared most. Not being able to move or communicate at all anymore except with the assistance of an eye-gazer computer, she responded “Not being able to die.”

The fear of death is natural to all human beings. When suffering transcends this fear and you want to make a choice to die with dignity, it is often too late to end the suffering on your own. In South Africa suicide is not considered a crime but voluntary euthanasia or Physician assisted suicide is illegal and carries a potential murder conviction for the person assisting the patient.

Dieter’s current chapter involves a court case to challenge the laws of South Africa in line with every individual’s right to dignity granted by the Constitution. “Death and dying are hugely personal issues and even now I can’t say when I will make that choice. I think when my innermost fear of death is replaced by the fear to live, the point of no return has been reached. To then ask for help to die, only for it to be denied based on legality doesn’t sit well with me and must have a similar reaction on a multitude of others faced with the same situation. How can asking for help in such a deeply personal matter be illegal?”

Dieter also doesn’t see any dignity or quality of life in prolonging his life by means of external interventions. About this, he has already made up his mind. He watched a very good friend die in the same way two and a half year ago. What however keeps him going is being part of instituting change for himself and many others like him.

Not having the choice to be able to ask for assistance to die when he needs it most and by his own choice is creating unnecessary emotional, psychological and financial stress for him and his family.

“Right now my story is limited to what it is and the legal process may take longer. I want my story to continue past me to institute change. We don’t talk about death but the subject should be on the table. I love life and I live with joy. That is why dying doesn’t stress me out. I would like to be present to see change for everyone but if I’m not, I want to know that my death has had a purpose.”

South Africans suffering with a terminal illness deserve better end of life choices.

We all do!

Read More