Monday, February 21, 2011

Choose Life

Sounds simple enough, I choose life! At this stage of the game I do but in all honesty I am starting to wonder how long I am going to be able to continue to make that choice. The last few weeks I have found myself spending a lot of time considering just what life is to me and what rights I feel I have over it. I know that I have been fortunate enough to have lived a life that has brought me great happiness and I have done extraordinary things, but … I have also suffered unbelievable losses and sadness. At this age of 42 I feel like I have experienced significantly more than most my age. I have already ticked off everything on my bucket list. With this in mind I have been asking myself if it would be wrong of me to terminate my life if I found myself in a position where I no longer felt happiness or sense of purpose. It’s a difficult question but the only answer I can come up with is no, it wouldn’t be wrong. The sticking point for me is the pain it would cause Mum and Dad and Michael. I have felt that pain myself first hand I don’t think I could give that to them in good conscience. It’s such a dilemma. When a family pet suffers we consider that the kind and loving thing to do is to euthanize the animal. Why do we not offer our loved ones the same respect? It’s not fair.

I have chosen to write this post not because I am currently contemplating suicide but because I am sure that most of us who are severely effected must at some stage address the issue. It’s such a taboo subject and we really need to talk about it. I am really interested to hear other peoples perspectives, so please leave your comments.

On a more cheery note … the Art 4 XMRV project has had great interest. Thanks to all the artists who have contributed work and to all the people who have already purchased cards. Please keep it in mind and pass it along when you can … the more cards we sell the more money we can raise for the WPI’s research. If you have no idea what I am rambling on about then please read my previous post. Cheers!


  1. hard subject but well done. as you say most of us who have suffered so dearly have at one time or another contemplated ending it all. i can say at my worst point i did as well. living with such pain and isolation, akin to solitary confinement in a war prison camp, in total darkness because the lights hurt and even the voice of a loved one hurts, is such a poor quality of life. though i am thankful i hung on. i am not well but neither am i confined to a dark room. i am living a life i have managed to want to hang on to...even though it is far from the life i had. xx

  2. Hi Lee Lee,

    This is a very important subject and I have similar questions and feelings... I am not contemplating suicide but I am like you wondering what would be the point of living an existence devoid of purpose. I have thought about choice and ultimately I would want to have that choice.

    I don't consider myself to be severely affected, but currently severely limited in what I can do. I am still able to do quite a few things independently but I rely a lot on support from people around me. I feel I have a sense of purpose but some days I cannot find the strength to fight nor see the light beyond the darkness. However I have so far managed to surrender to this somehow, and to resurface with new insights.

    I have also thought about my loved ones and what their lives would be like if I made that choice. Ideally I would want to be able to discuss it with them and get their support. I have discussed it with close friends already and knowing I can talk about it takes the pressure off.

    The fighter in me also wants to be around when certain people are going to be held responsible for the way people with ME have been treated by the medical authorities. Sorry I diverge here...

    Ultimately I know it's not my life that I want to end, it's this nightmare.


    ps: I'm selecting some images for Art 4 X, will hopefully send them soon!

  3. I appreciate your honesty so much, Lee Lee. It takes courage to write about such a taboo subject. I would say this about that bucket list. I like to think of the bucket as having no bottom, meaning that positive experiences may be just around the corner, out of sight. We never know. I like to think of the universal law of impermanence as my friend. Some days it's all I hold onto but I do because I know that tomorrow I might just feel a little better or something joyful may enter my life. You just never know.

    Thanks again for writing about this.

  4. No Lee Lee, it wouldn't be wrong. I also would like reserve the right to decide when enough is enough, though I am a VERY long way from that point. I also think from reading a bit about assisted suicide and the surrounding debates that this is a very complex issue and agree with you, the impact on the family and friends is a huge factor.

    I think what IS wrong is that in many cases where people do decide to end their life, it is after years of a lack of support or appropriate medical care which should be a right for disabled people, in order to help them feel that life has pleasure, variety, and is worth living and that they are not a burden on their families/carers/state. This is so often sadly lacking and it is very convenient if we all just "disappear"! It is an abuse of disabled people when they are made to feel this is the best option, either directly or indirectly through lack of care and attitudes towards the sick and disabled in general.

    I agree with Toni above, things can and do change; though the more extreme the severity of illness the harder this can be to believe and perhaps not enough can change in such cases.

    Also I agree with onirical, it is not life that one wants to end, it is the suffering and often that can be eased, even if just a little, if proper care is provided to make life feel more bearable. This we must fight for.

  5. Think my last comment got swallowed up so I'll try again ...

    You said my post 'Veteran' was sad and moving but this really is...cant bear to think about it.

    Undoubtedly when people reach a stage in any illness where their suffering is beyond what any right minded person would consider bearable, they should be helped to go quietly and painlessly with as much care and love as possible. Any pain that must then be borne by loved ones who are left is the price that must be paid so that the person who is so ill can end their suffering.

    For the likes of you and me I have to agree with Toni and Ashy too. I have been as ill as you are. I have laid in bed for months with the curtains drawn, unable to use the computer, read, bear light, eat properly, hear properly, see properly. But eventually I have crawled my way back to some sort of life. I know that's not always possible for some PWME...but the point is that you never know what tomorrow and the next day will bring.

    I think many of us also come to a place where we think 'What's the point ? What in God's name have I got to offer ?'...but in fact we all have something to offer. You once said to me that everyone matters, everyone has something to contribute ...and that's right. I've looked after enough people, personally and professionally, ...people who in other eras would have been written off as know that they have plenty to offer and show the rest of us.

    While you are in your little apartment in Bris....'shut in' as you still offer a lot in ways you cannot know :O)

    A brave, courageous and open post, my dear.....a reflection of you x

  6. I'm so glad you shared these feelings. I too have asked some of these questions this winter. Especially during Janurary where I was so incapacited. Yes, it's worth discussion and I thought the same things you're thinking. "I've lived a good life....I've done so many amazing things and met so many amazing people". I often wonder why I couldn't have just died at 32 instead of getting this terrible illness.

    I hate living off the government, being so stigmatized by the medical field and feeling useless. It's terrible. How do we continue? Why do we continue? Where do we find the strength to do so? I agree, part of it has to be for family. Loosing a family member to suicide is a terrible terrible thing. I know two people who've lost family members and they've never recovered.

    It probably doesn't seem very big but your blog does make a difference for people (at least it has for me). Being able to, for instance write and discuss this topic is a good example. I wish there was something I could say that would help?? But I do agree with CUSP that you don't know that you might not improve....It might be worth hanging on for?

  7. Right there with you Lee Lee...face it day by day....sometimes really feel that something has to be watching...n laughing (well the equivalent of)at what seems to be my dogged determination to keep going...

  8. this sounds incredibly like a conversation i was having with a dear friend the other day (insert one of those little smiley faces if you feel so inclined). so you already know my thoughts on this, and you got in before i did with blogging about it! just wanted to say good on you for doing so. XXOO

  9. I think this topic is why I keep dreaming of a campervan or a mobile bed. This life I am living is not really enough and yes I can synthesize happiness still but I am not sure I would bother fighting cancer with immune suppressing drugs if I ever got it. Do ya know what I mean?

  10. Zzirf, yep I know exactly what you mean and I think I would make the same choice.

    kp. haha beat you to it!!!

    upnorth, yes I have had the same thought - why couldn't I have got something terminal instead, then the suffering would be over plain and simple.

    Cusp and Toni, I didn't mean to imply that there would never be new things that come along that aren't wonderful .... I was more trying to say that I'd be content to 'go' knowing I had done the al the things really important to me.

    Ashy, you're dead right about the years of lack of support for many people ... such a sad way to live.

    Onirical, yes discussing it with family would be a really cool thing to do ... but how do you even bring up such a subject without upsetting everyone?

    Elise, there certainly is value in hanging on if you can, thanks 4 the reminder!

  11. Thanks for writing about this topic, Lee Lee.

    Even before I got ill, I had the view that no civilised society should force people who genuinely and rationally want to end their own life to try obscure methods that were likely to fail and leave that person in an even more desperate position.

    Now that I am ill, that view is strengthened. I believe that I should have the ultimate say on when being alive is a burden I cannot bear. And, of course, the fear we all must have .... what happens if we leave it too late and want to die but no longer have the mental or physical abilities to 'take care of it' ourselves?

    As for the pain caused to loved ones, I do understand that and I know you understand it more than most. But isn't grief a selfish thing anyway? Aren't we grieving for ourselves rather than the person who died? I'd like to think, although I might be proved wrong, that if a loved one of mine said they were in too much physical or emotional pain to go on living (and that they were being rational and considered in that view) I would give them my blessing to seek eternal rest.

    Ultimately this is a very personal decision we all have to make and I don't think we can ever all agree on it. Nor should we. I would say though, that the taboo of suicide (aside from religious beliefs) is often linked to something that we would probably never do. The person who reaches the end of their rope, doesn't tell a soul what their plans are and jumps off a bridge one day.

    If I ever decided enough was enough, I would put my affairs in order, say my goodbyes and let everyone I loved know in explicit terms what they meant to me. I'd say that's much less traumatic for the surviving loved ones than someone who has a heart-attack and has no opportunity to say such goodbyes.

  12. I agree that this is something that needs to be talked about. I've done a lot of that over the 4 years I've been sick.

    I agree that living with this disease at a severe level causes us to question quality of life vs how long we live.

    I've come to believe that it is a choice and something I choose to do but if I ever get to a place where living is no longer worth the suffering of this disease I won't hesitate to utilize my choice again and make a different one.

  13. Like you, I always come up against the problem of inflicting pain on my beloved. I often contemplate suicide, not because of the CFS but usually out of anger. I think just having the option to take my own life can make me feel I have control in an otherwise uncontrollable situation. Feeling suicidal for me is a sign I am overwhelmed, but it also has kept me alive. In the last analysis, I am too curious about what may come next.

    Having said that, I'm concerned for you. I hope you have someone close who you can share these feelings with. Whether you decide to end your life or not is up to you - but that is not the issue here. What is, is your suffering and your loss which is becoming untenable.

  14. Jo you are so right ... it's one thing we CAN have control over!

  15. ''yes discussing it with family would be a really cool thing to do ... but how do you even bring up such a subject without upsetting everyone?''

    I wonder if sometimes due to the chaos this illness causes we underestimate the strength of our loved ones. While some are in denial / rescuing mode / can't accept etc, others have surprised me by their acceptance and support.
    My experience is that the people that matter around me are upset anyway and feeling powerless. I don't want to create another barrier by hiding my feelings, so we might as well be upset together and have a laugh afterwards...
    Sometimes it's hard to ask for help though, and there are some people I wouldn't discuss it with.

  16. Most people do not understand this illness and cannot understand why suicide would seem a reasonable option for many of us. I considered it once. My husband was out with my 3 children and I was so poorly at the time, that I really felt as though I couldn't go on for much longer - you know the feeling, you just want the suffering to end and to be at peace for once.
    I didn't do it because the thought of my children and husband returning to find me was more unbearable than this wretched illness.
    People suffering from ME/CFS who choose to commit suicide are not taking the easy way out, they are incredibly brave and I respect and understand their decision.
    I am glad I am still here though. The WPI's work is a reminder to us all that at any given time, we could be just a small step away from a life-changing discovery for us all.That is what we must hold onto in our darkest days and that is what is keeping me going.

  17. I have had these thoughts/feelings quite a bit over the last few years. It's a horrible place to be in, to feel that way. Feeling like your between a rock and a hard place. For me it's usually when everything seems to come at me at the one time-not feeling understood, depression & mood issues, fighting with loved ones, frustration at living in groundhog day, anxiety over my situation, lack of emotional support-loneliness

    I heard/read somewhere recently that most people who attempt suicide and fail usually go on to live a full and happy life...

    The lack of support for people with these illness is very sad I think. What gives me fight is the thought of getting better and hopefully being help to maybe make a difference in this area in the future. I tell myself there is a reason I got sick. I've always been emphatic and helped people...

    I agree with Toni in relation to impermanence. When I'm in the darkest of places I usually say to myself 'nothing is permanent', tomorrow may be different.

    I'm genuinely sorry you've been feeling so sad xx

  18. hey sweety

    I hope since this post - sorry I have only just mustered the energy to read - that you are travelling slightly lighter.

    thanks for being brave and articulating a common thought among those of us with cfs/me. I too have wondered what the point is... not that I wish to die, but simply that I am not living and if this state that I am in continues than maybe it would be better if I was not here.

    but I cling to the hope that it will one day be different for us and I take inspiration from those who suffered through the battles of understanding - HIV, Diabetes, MS. because eventually they were seen, understood and then treated.

    all my love to you xoxo