If you are someone who doesn’t read newspapers, watch the news or actively participates in social networking then you may not of heard of the case of Tony Nicklinson. For those that do, you will probably be familiar with Tony’s story.
Tony Nicklinson is 58 and suffered a stroke in 2005 and has been suffering with locked in syndrome ever since. Tony has been paralysed ever since and is unable to move anything apart from his eyes and head. Tony has been fighting the British judicial system to allow a doctor to end his life. Tony is deeply unhappy and does not want to carry on with the life, he now lives. He has no motor functions has very little dignity left and wants to end his life.
Last week in the high court, Tony lost his case to change the law on assisted dying. Even though Tony cannot speak, when he heard the news it was obvious how he felt. Devastated.
Although, Tony vowed to carry on fighting. He obviously felt that the fight could not be won and started refusing food. After refusing food after the judgement, Tony caught pneumonia and died at his home on Tuesday.
Tony’s case probably has touched every person who has read about it. For me, it has touched me so much more. My dad has Huntington’s disease and is very much like Tony. He knows what is going on around him and although his memory isn’t very good, I can talk about things with him and he understand and reacts. Like when Mr Bouche and I told him we were getting married, he cried. He cried during our wedding and when I joke around with him he laughs. He cannot speak, has no motor functions and has no real quality of life. I know deep down he would not have wanted this existence. He was such a proud man and to be left the way he is, is extremely sad.
I have 50% chance of having Huntington’s disease too. Mr Bouche and I are doing the necessary to have a baby free of HD, as for my fate we will have to just wait and see. I do not want to be tested. I don’t want to know my destiny. I worry already. I see things I do and wonder if it is HD. There is a big part of me that thinks I have it. If I had to guess as to whether I have it, I would say I am 70% sure that I have HD.
If I do have HD then I know my fate. I will eventually be like my Dad and other HD sufferers I have seen. I will be like Tony Nicklinson. The thought makes me so sad and I am terrified.
I am loud, opinionated, vivacious, vocal and spirited. The thought of not being able to communicate and not being able to sit, stand, walk and hug is not something I want to contemplate.
Mr Bouche and I have spoke about my fears many times. He knows, that I do not want to be like my Dad or Nan was. I pray the law changes, so if I do develop HD, I can decide I want no more and die before the disease takes me to an undignified place. Where my family are scared to see me, when I cannot hug my children or grandchildren, when I cannot show Mr Bouche that I love him and when I am just a feint shadow of myself.
The sadness that Tony Nicklinson showed when he lost his battle against the courts speaks volumes. How tragic that he had to starve himself to death in order to die with some kind of dignity and peace.
I don’t expect everyone to agree with my views but surely a human being should be able to end their pain and misery if they should wish.
R.I.P Tony. I hope you have found peace now.
Bouche x x x