Friday 17 August 2012

The Right to Live

This piece has been waiting to escape from my weary brain for quite some time. Some people won't like it but tough.

Every few years we get someone with a terminal illness who feels that they have to change the law about assisted suicide/euthanasia/topping yourself. They usually don't actually want to die right away but want to know that if they do decide they've had enough and can't physically take their own life someone else will and not be prosecuted.

The media love it. The general public get very upset and pity the poor disabled wretch. 'We wouldn't keep an animal alive in that condition' (I know someone with an old disabled dog who cares for him and would never put him down). TV programmes debate the rights and wrongs and then it's forgotten until the next court case/terminally ill 'hero' attempts to change the law. I'm going to explain why I believe that nothing should change and it's based on my own experience, so enjoy the ride...

I was diagnosed with motor neurone disease (MND) when I was 34 and expecting my son. I didn't know what MND was and was absolutely horrified when I found out. My body stopped doing what it had always done and I didn't know how to cope. My ex-husband started to mock the way I walked and spoke. He called me ugly, said I smelled ill and moved out of our bedroom. Every now and then I would get a thump from him. I still can't look at his hands.

I cried every single day for three years and wanted to die. Being a fairly observant Jew at that time, I knew that taking my own life was forbidden. I didn't have the guts anyway and was also in denial, hoping that I'd recover. By the time I realised that MND wasn't going away I couldn't use my hands. I had lots of total strangers caring for me, seeing me naked and wiping me after I used the toilet. I was deeply depressed, barely eating and started begging my hospice doctor to end my life. He felt so sorry for me that I know that he would have snuffed out my life if it was legal.

I'm so glad that he couldn't. I would have missed the best adventures of my life.

So what turned it around? Great care from my hospice, antidepressants, chucking the husband out, getting a computer that I could use without hands, some romance and regaining my confidence again. Instead of dying I started to live again. My children still have a mother and I'm a good one. I can write, read, work and paint. If you don't know me you can see what I'm up to here. If you do know me, I have to go because I have questions from a journalist to answer, two exhibitions to prepare for, several articles to write and I'd rather be painting.

LIFE CAN CHANGE.

25 comments:

  1. Comments like that are always appreciated Michael ;)

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  2. Thank you for writing that! I love your energy. RC

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    1. Thanks RC. There is so much more to say but this post highlights some important aspects.

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  3. It's great that you have the life & made the choices & decisions you want but I think we should respect that every individual is different & need to do what suits them. It's not right or wrong.

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    1. Anonymous, I believe that it's wrong when individuals try to change laws that protect vulnerable people. I was vulnerable and would be dead now.

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    2. Individuals cannot change the law, only Parliament can do that, but in our free society anyone should be able to lobby for changes they seek an d for others such as yourself to argue against them.

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    3. Jane, you're right. My problem is that the media are only interested in right to die stories. I could never get this published in a national newspaper. Therefore, the general public and parliament don't hear the other side.

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    4. May be not your particular piece but plenty of articles & comments that support your point of view are made by journalists, MPs, Peers etc. it is frustrating that those living & overcoming severe disabities are seldom highlighted by media which is why all that you & others do is worthwhile & important x

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    5. It's extremely frustrating for me Jane. But I'll keep on until people listen!

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  4. Wow Sarah
    What a moving blog post, but also very well thought out and reasoned. We had a friend who had a particularly aggresive MND and it was something I hope I will never see again.

    You are an amazing example of a diagnosis of MND not always being the end of your life - just a different way of living. As for your ex husband - I am continually amazed by women I know who say that partners / husbands have been unable to cope with a serious illness - it is so much THEIR weakness, and their loss.

    You are also still very much a clearly beautiful woman and some of the recent photographs were amazing!

    I've followed you on FB for sometime now and although I don't comment much, I am continually astounded at your formidable approach to life. You proabably pack more into your life than most able bodied people every will do.

    Keep on keeping on and bringing your kindness, generosity of spirit and passion for life to this Earth,

    Warmest wishes

    Liz x

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  5. What a thought provoking piece of work Sarah. I can not thank you enough for all that you share with us. Your honesty is so refreshing and an inspiration to me every day.
    I feel very blessed to have you here giving us hope and radiating your light and energy into what would otherwise be a very dark and lonely place.
    When I see all that you do it reminds me to get busy living instead of dwelling on all the negative
    things that Mnd has brought into our lives.
    Sending you all our love always
    Davina x

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  6. You are an inspiration Sarah, having seen first hand how awful MND is after my Dad lost his battle with it 3 years ago I have some understanding of the battles you face.
    It has made me more aware of how much we take life for granted and how quickly things can change. I like to think of life as one big story book, full of exciting adventures as well as scary battles. Sometimes the story may seem a bit too scary and we want to stop reading but we turn the page and keep reading hoping that more exciting adventures lie ahead.

    I truly hope that you get the happy fairytale ending that your story deserves.

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    1. Thanks Liz. I'm so sorry about your dad. A fairytale ending would be wonderful. I get cured and walk into the sunset with a handsome man... You never know what's on the next page!!

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  7. Sarah, you continue to amaze and inspire! I think you should pitch a weekly column in a national paper? Gina x

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    1. Thanks Gina! I wish a national newspaper would have me xx

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  8. I agree with Gina! I really enjoy reading your blogs Sarah! Shireen xxx

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  9. You are a true inspiration and your story is yours, so while I'm extremely happy things worked out well for you (though sad it took so long for you to get where you are now) unfortunately, that's not the case for all.

    No one is ever happy about such devastating news, but a psychologist should be able to tell if it's the diagnosis itself that has one wanting to die or if it's that specific individual truly not having the coping skills, medical means (sadly way too common in many countries), and/or other needs that are not being met that makes them want that option.

    So, I have to agree to disagree as I do think it's a person's right to die, however I also feel it should be more than a simple..."I want to die." "Okay."...type of thing. A waiting period (at least 6 months but up to five years) coupled with psychological evaluations during that waiting period should be available.

    Sadly, not everyone is strong enough to see the light at the end of the tunnel...wherever that tunnel may lead...but - forced to or not - I'm glad you were! Thinking of the art I'd be missing without "meeting" you is now making me a little teary-eyed so I think I'll end this now.

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  10. Sarah, I saw your post on Facebook via my cousin Keren David, and read your blog - interested in disability as my daughter is disabled. What you write really struck me. We have experienced such terrible times with our sick little girl over the six years of her life, and many people have said to me "how amazing, you are so strong, you are kind of....happy...I couldn't be in the circumstances" etc. Of course, I have my desperately awful times about it. But it's all about how you look at a situation, how you respond to it, rather than the situation itself. I decided on acceptance and that I would still be happy. Since having her, I have done what I always wanted to do - write a book, which is really hard as I'm a round-the-clock broke carer instead of the fun-loving working girl I was. That pic this week of the guy who was told he wasn't allowed to die really got to me, seeing his pain, and I wished then that the outcome had been different for him - then I read your blog and realised I agree with you. Maybe you could write an article about this as well as a blog - and get them to use your lovely pictures. Psychologies mag?
    So I wish you a lovely, lovely day
    Bev Cohen

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  11. Hi Sarah. I lost my dad 10 years ago to this awful condition and my best friend less than a month ago. I also cared for people with MND in my local hospice before I retired from nursing in May. Your story is an inspiration and I congratulate you on your courage. Both my dad and friend showed remarkable courage but both had their moments when they just wanted to be free of their distressing symptoms. I strongly believe that people have choice and that choice should be made available for those who can no longer cope with life. I wish you luck and much love. x

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  12. You are like a big sister Sarah. I love you.

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  13. Sarah the objective of this comment is to Thanked you for this article.It helped me to boost up from my griveness.

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