The dieter harck story
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!