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Prologue
Chris Koper, a 63 year old, former Human Resource Professional, Master Sailor, boat designer and builder, nature enthusiast and avid photographer, was diagnosed with ALS or Lou Gherigs Disease in May 2005 following 8 months of a mysterious weakening of his right arm. Chris lived his life fully, and in the face of incredible and relentless loss of physical function, he was able to create an ending to his life that inspired people that came to know him through his courage in facing his illness head on. Chris died peacefully at home in my arms on November 8, 2006, just 18 months following his diagnosis. At the time of his death he had fulfilled the dreams he had created for himself and his family and set up the structure that would continue his legacy of creativity through his sailing dinghy designs and his photography.
I don’t think that either of us realized at the time, the incredible journey that we embarked on in May 3, 2005 as we walked away from that doctor’s appointment to face the destiny of terminal and hopeless illness that had been set before us. From that point, Chris took control of his life and began a process that would have him say to others that the last year of his life was indeed the best one of his entire life. He developed an ability early on, to re create his perspective, from one of scarcity to abundance and from a feeling of being unfulfilled to one of love and accomplishment in every area of his life.
By the time he died, Chris had lost nearly all of his functional capacity to move, swallow and speak. He had, however, a fierce determination to fight to the end and up to the last week of life was sending e mails to friends and family through the use of a computer assisted device that required eye and knee movements to select letters and words, a painstaking process that took hours and exhausted him. Chris left those of us who were close to him through the most difficult final months, with a profound sense of the fragile thread that is our hold on life. For Chris, his message was consistently about love, and in his own words ‘share it, don’t hold back, give it way’ was a constant message. In living the journey of dying and death with Chris, I have, through the suffering and the pain of it all, grown to appreciate the fact that we are all ‘dancing around the edge of our own graves’ and a few of us get to really see how close we are to the finality that death brings. This realization is an opportunity to move away from the tendency of primarily ‘doingness’ and to ‘beingness’, that is to live the moments of exquisite presence with more focus and appreciation for those little things that otherwise would be passed over.
Chris began to write his story shortly after he was diagnosed and continued to add to it throughout the 18 months of his living with the constant deterioration. Some of the sections were done completely by him while he was able to work on the computer on his own, some were dictated and when his speech was unintelligible, he continued slowly on his own using his head movements and knees to select and click as he added and edited. To enrich the story, Chris requested that family and people close to him write their perspective on their experience of his disease process.
~Margrét Comack (Chris’ wife)
Chris's Full Story