The Canadian Amyloidosis Support Network::Dedication

The following are stories submitted by people wishing to share a loved ones experience with Amyloidosis.

In memory of our Father and the cyclone that is Am
Submitted By:	justine wilson

In memory of our Father and the cyclone that is Amyloidosis On 12 March 2005 at 10.30 pm Pacific Standard Time, Neil Laurence Wilson left us while in the arms of his loving mother, Pearl in Victoria, British Columbia. He passed with storybook beauty, saying his last goodbyes with his final breath in peace. Although he had been complaining about heart and weakness issues, the suspicion of the disease was suspected Christmas Eve 2004, confirmed a few days later. Primary Amyloidosis AL with cardiac and liver involvement. I guess if there is anything positive to say about Amyloidosis is, that for our father, he did not experience much pain. Only discomfort caused by the symptoms and side affects like severe weight loss, which attributed to total body weakness, loss of appetite due to food tasting awful (extremely salty), poor ability to breathe. While he did accept his fate without anger, but he did express his frustration with the medical community. He always said, I just know there is something wrong and why won’t there people listen to me. Previous to his diagnosis and a year and a half of various doctors tests and having Professional medical care telling him “sir, you are just getting old”, just made him give up in the end. He could have tried harder to combat the Amyloidosis and get his body into a better state to allow treatment options. However, he was not strong enough of mind for the fight and in the end chose to let go. I respect his decision and who am I to demand him to sustain himself longer, when it is a plain fact his prognosis was extremely dire and fatal. My father enjoyed his last years as a healthy person who loved living near the Toronto beaches. He enjoyed rollerblading along the boardwalk and people watching. You would often see him sitting in the sun on a Sunday afternoon, building sand castles on the beach. Although he loved all sports, his favorite was football, and had an absolute passion for golf. I loved his enthusiastic stories about the joy & torment that little white ball would give him. My father was even taking Latin dance lesions, to impress the ladies. He was always willing to try something new, if he knew it would better him as a person. My father distilled in us as young children, always learn something new each day and always try everything once, otherwise, you won’t ever worry about the “what if “ . I have followed his philosophy and for those who know me, I’m always the first to try anything, to push myself to be a better person. I thank my father every day for that. He was my coach in my younger years, always pushing me to my limits. I remember his face the year I won Female Athlete of the Year at my school. He was so proud of me. These are the times I reflect on. My brother and I also share’s his love for rollerblading and beaches. My brother Neil lives in Sydney Australia where some of the most beautiful beaches are at his doorstep. As for golf, we both have since taken up the game (again for me) and are trying to honor our father. We both know we will never be as good as our Father was. We also have stories to tell about the effect Cyclone Amyloid had on us as individuals and the poor health system we have to deal with. From by Brother Neil Kenneth Wilson: My experience with the Canadian health system is mixed. While I have great empathy for what Doctors and staff must go through, it has left me cold. When I was communicating with them mostly by email (I live in Sydney, Australia), I found them reserved and not listening to what others have to contribute. I suspect this is for legal reasons, which is fair enough. However, I did try to explain to them he was not of sound mind and, however they chose to ignore this. While his diagnosis was late, I do not have any ill will toward his team other than not trying harder. I just seemed that they knew he had a limited time and chose to not get too involved. During this time, I ended up rashly quitting my job due to the stress of the situation (late nights researching & communicating, conflicting time zones). I am fine with this as I, like my father; hold respect & integrity in high esteem. I needed to exit a conflicting work environment so I could be there to support my family and father. I have no regrets, although it has been a severe financial blow. Out of this situation, I saw my sister Justine rise to the occasion and make me so proud. While it was unbearable being on the other side of the globe and not being able to assist my father, my sister was there doing her upmost. To this day, I am amazed and proud of her. She sacrificed the most to be next to my father during his last months, having him move in with her, for her to care for him. She cared for him, comforted him, assisted him, and tried to push him to not give up. It was physically and emotionally challenging and draining for her. Justine, you are a champion. I am so happy my fathers wish to die in his mothers arms was fulfilled. It brings great comfort. On 14 February, we flew with him from Toronto, Ontario, where he was staying with my sister, to bring him to his mother in Victoria, British Columbia so he could be with his mother, Pearl. I can’t even imagine how distressing it would have been for a lady in her mid 80’s to watch her only kid die before her however, it was the ideal situation. My father did not want to waste away in a hospital and, again, I am so happy his wish was granted. I know Pearl wanted the same and I am eternally grateful for her strength and for being with him for his final four weeks. If anything, these crises make us all think about what is truly important – family, friends, love & how precious life is. NOTHING ELSE MATTERS. For those going or who have gone through a similar situation, have some comfort that no matter how little or how much you do, it may be impossible to be enough. While we will have a myriad of feeling and emotions during our grief, guilt should not be one of them. There was nothing more we could have done, only do things differently. However, my fathers’ fate would not be changed. Quote from our Father: “I think I can handle this situation much better than most people because they usually ask "WHY ME? But my philosophy is "Shit Happens all the time". In this case is was just random BAD LUCK that settled down on me. Nobody did anything it just happened. So I completely accept it. I have no anger, it just happened.” From an email excerpt 29 January 2005 Dad, I hope you will now finally have peace in your life. I am proud of your pursuit of success and know you tried however did not overcome the obstacles put before you. You are a part of me, and I a part of you. For you are a success. You created Justine and myself, your daughter and son.

In memory of our Father and the cyclone that is Am

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