Thursday, 26 May 2011

Life - Finding Meaning and Maintaining Ethics

The title of this post is rather wordy but it reflects what is occupying my mind most of late. I was reflecting on the fact that, this month one year ago, I was submitting my essays and sitting exams in the first year of my Social Work degree. I was very happy with the marks I attained, even though I was really struggling to function towards the end of my writing and during most of the exams. One of the essays I scored highest on was a piece I wrote on Values and Ethics. A subject that I initially found frustrating but that I gradually grew to be fascinated with. As it links in to what I want to write about today, I have posted a copy of the essay for download HERE.

The essay is very focused upon a social work perspective and that, combined with an exploration of the ethical models of Aristotle or Kant might not be of interest to many people. I wanted to provide context in addition to what I'm writing now though and it is another indication of how different my focus was only one year ago. And yet, how I'm almost wrestling with the reality this very day.

I appreciate this might all seem confusing and opaque so far. My apologies. I mentioned in a previous post that I felt I was standing at a cross-roads in respect of so many things lately. Decisions I make and actions I take will change my path. Returning to values and ethics, I guess 'consequential-ism' is a good word for what I mean. Everything I think and do has a consequence and leads me somewhere (and also leads me farther away from places/people).

The support of the physiotherapist and occupational therapist had given me a boost. A very welcome one. It also creates consequences. My initial enthusiasm about the delivery of the elbow crutches created a faulty sense of what my life would be like from this week onwards. I would be out and about with my crutches, no longer housebound. Well - no. In reality, I still cannot stay standing up for longer than a few minutes. Crutches aren't going to fix that.

I also fear I might become a measure of success for the therapists. Will they be judged on whether they can make me 'better'? Already, one of the therapists has suggested CBT and normalising my sleep and waking hours and activities. Unfortunately, it isn't so simple. I must sleep when I cease functioning (or at least rest by staring into space and laying flat) and that cannot be dictated by a clock. So, dilemma number 1: Am I helping or hindering myself by engaging with a Rehab team? Am I being defeatist and negative by not trying to fit in with 'normality' in terms of rest periods and activity etc?

And now we return to values and ethics (it is all linked, I promise!). What the hell am I to do with my life? This question keeps coming back into my mind again and again. I am struck by there being some wisdom in stopping focusing so much on illness. Yes, I am unwell and, yes, my abilities are much decreased. But is focusing on this so much 'healthy'? Is surrounding myself with others who are focused on their illnesses too 'healthy'? Then there is the opposite side of the argument. The wrestling with ethics. Now I've become aware of the suffering that goes on amongst people I've become close to, now that I've been given glimpses of their everyday struggles, how can I ethically say that I should spend less time focused upon illness? Shouldn't I ethically be spending whatever energy I have in trying to find ways to make a difference in people's lives? So, dilemma number 2: Should I focus less on my own illness and/or the illnesses of others or should I devote more of myself to helping others?

These things are best in threes, apparently, so I'll also mention the next thing I'm toiling with. How do I find a balance between acceptance and trying to get better? I strongly sense (and others have suggested it to me) that acceptance is something I am struggling with. For me, acceptance means giving up and consigning myself to being ill forever. My instinct is to keep researching, keep trying new treatment ideas and keep aiming to protect what function I currently have. Again, there are consequences to this. Life is passing me by. What if I just accepted this is what I'm currently like and tried to carve out some sort of life for myself to work alongside my limitations? So, dilemma number 3: How can I make peace with my current lack of health and still retain a desire to get better?

If you have reached this point, I applaud you. This will not be regarded as one of my more coherent posts. If I have confused you, I apologise. Confusion reigns supreme for me right now and perhaps putting all this 'out there' will bring some form of clarity or elicit some form of sage advice. Worth a try!


  1. Acceptance is NOT synonymous with capitulation, rather more an assessment of the realities of a situation. With an acceptance of reality comes the ability to actually make feasible plans rather than fantasy tripping.

  2. Acceptance isnt the same as resignation, giving up, rolling over. Its about acceptance of things as they are NOW with tolerance and space to achieve whatever you can in the present and HOPE for the future.

    'Now I've become aware of the suffering that goes on amongst people I've become close to, now that I've been given glimpses of their everyday struggles, how can I ethically say that I should spend less time focused upon illness? ...It's all about balance: Yes its all very well to want to help other people and yourself in terms of illness but you have to keep something for yourself too. Goes with the old cliche (which I hold to be true) that if you dont love yourself then you cant love anyone else....nurture yourself in a variety of ways and dont just focus on one aspect of yourself. You're multi-facted/gifted..

    There..had my say x

  3. Hi 'Anonymous' :)

    Yes, I understand how I 'should' see acceptance. The struggle, for me personally, is differentiating between accepting the current reality (which I have) and accepting I can't make myself better (which I haven't).

    I'm all for feasible plans but my plans are currently limited to which days I should try to have a bath and when I'm going to be able to get to the hospital for my next batch of blood tests. I'm working from such a low level and that also feels like something I need to question.

    I guess the pragmatic approach is to say "well, accept you are ill NOW and live around your current limitations but also keep a focus and hope on getting better" - I'm really struggling to put that pragmatism into a way of being though.

  4. Hey Cusp :)

    As per my reply to Anonymous, I can kinda see the logic but I cannot seem to grasp the daily living in accordance with it.

    I guess I don't cope very well with uncertainty and with question marks. Nothing feels certain in my life anymore and I haven't really experienced that vulnerability since I was a child, dependent upon an unstable family unit.

    I almost deleted the original entry because it screamed of self-indulgent crap that I was finding myself impatient with. A part of me was screaming "just bloody get on with it" - but I know sweeping all this confusion under the carpet will only come back to haunt me later.

    It has crossed my mind that I might be losing my marbles though! I've always had certainty and a sense of direction and now I can't seem to grasp the most basic elements of finding a way forward. I've become stupid or crazy or both, lol.

  5. Hi B

    I think part of the nature of acceptance is that it's not something you can force upon yourself. It's more of a letting go of resistance, which is very different to giving up. Instead it frees that energy you were spending fighting reality (which you're never going to be able to change by sheer will really anyway) and allows that to be directed into healing instead.

    When i can feel resistance in my mind or body and then feel myself letting it go it is always quite astonishing to me how much i can feel my body relaxing. And I think that once I try to stop forcing a moment (or life) the way i want it to go and trust the 'flow', that's when things really change. Of course all of that is easier said than done. And it's something that takes time. It's more like a reaching a realisation that the way you're doing things isn't helping you or you want to try another way, and GRADUALLY learning that new approach and seeing how it works for you.

    The ideas of letting go and accepting uncertainty are very hard for many of us to begin to take on. With your life expericnces it's only natural they would be even harder. Being gentle with yourself and feeling compassion for yourself would have to be a couple of the most important things you could possibly nurture. Don't expect yourself to already have figured everything out or get to the end of a path before you have found the beginning. Relaxing into a situation is NOT giving up control, it's trusting yourself enough to know that you will cope with whatever comes your way. And try not to make the mistake of thinking that accepting the present is the same as relinquishing your power to make choices about your future.

    I think the keys really are the staying in the present the majority of the time (again, takes a LOT of practice and patience) and trying to let go of the desire to hold so tightly onto your mind.

    There you go, just my thoughts, for what they're worth. I wish you luck, it might sound simple to some, but as you are finding it is anything but.

    XXOO K

    PS - Let go of the 'shoulds'?

  6. From my perspective it's actually not directly about accepting illness or current level of functioning etc but rather accepting that life in general is out of my control. All sorts of things come and go and there is actually little I can do to control any of that. I think in some ways I am lucky because I learnt this lesson when Robert died years ago and so being ill feels like the same kind of thing and so a lot of the acceptance is already done, because, like I said it's not about the illness it's about life ... and I know from experience that there will be more good things that come along and bad things, and I just have to run with them whatever they are ...

  7. Hi K,

    You've hit upon a couple of very key points - thank you.

    Control. Yes. I'm a total control freak. That always had its challenges in everyday life beforehand but now it is more problematic. Now everything is so much more out of my control. And I am less able to work effectively on keeping everything controlled.

    You're right about the uncertainty. I hate not having a 'plan' and I hate not knowing whether I'm going to be well enough tomorrow to have a bloody bath. But, it is what it is. Seems I need to get back in touch with Taoism again. Interesting that you mentioned 'the flow' - that was the best part of Taoism for me. Accepting the seemingly good and seemingly bad with equal detachment.

    Really, this was always going to be the biggest struggle for me - with my personality and history and way of operating. I am constantly 'checking in' with myself to see if I'm okay and, of course, i'm not. I find it very hard to live in the present when the future is so worrisome.

    And you're dead right about this stuff being hard. It does sound simple but it's bloody hard. Hence me feeling a bit stupid for not grasping it all sooner. I can usually work stuff out but I feel like I'm stranded in the middle of an ocean right now.

    I'll work on the 'shoulds' - can't promise I'll fix that, haha.

  8. Hey Lee Lee,

    I'm sorry you had to learn that lesson in such a painful way :(

    You are right though - this is so about a lack of control and/or certainty as I've said in reply to K above. It's going to be a long road for me to master this!

  9. 1: Am I helping or hindering myself by engaging with a Rehab team? Am I being defeatist and negative by not trying to fit in with 'normality' in terms of rest periods and activity etc?
    why not just see where it leads? at a point you will clearly know if they are helpful or not. it would seem every treatment one decides to undertake MUST be conditional on giving it a serious try BUT having no judgment - defeatism - if you decide it isn't working.

    2: Should I focus less on my own illness and/or the illnesses of others or should I devote more of myself to helping others?
    this is where the person on the plane says to put your o2 mask on 1st, before you put it on a child. after which - you can decide to - or not to - spend time/energy helping others. one day you may decide to join others w/ illness and wallow in it. other days you may decide that you will spend time on something which brings you joy.
    one gift of illness is you never have to 'punch a time clock.' you can decide hour by hour what you wish to do.

    3: How can I make peace with my current lack of health and still retain a desire to get better?
    this comes in time 'grasshopper.' all of the above comments speak well to this. it took me years of beating my head against the wall before i understood that surrender did not mean giving up! instead it allowed more energy to flow...

    another gift of illness is making a concerted effort to get out of your head. my journey took me on a spiritual quest. i spent hours, days, months, and years listening to books on cd - no internet or at least a desktop on the other side of, what may as well have been, the world. this is my 'secret' for living w/ chronic illness. only through meditation, visualization, and 'mindfulness' could i EVER have survived decades of sickness!

    for you it may be philosophy (which may seem contrary to 'getting out of ones head') since you mention aristotle or kant. but all philosophy is theoretical after all.

    this can be the time to learn about something your interested in - but as a functioning person - never would have.

    I count him braver who overcomes his desires than him who conquers his enemies; for the hardest victory is over self.

  10. Thank you for your wisdom, Elise :)

    So, this feeling of being lost at sea and the incredibly powerful battle going on inside me in relation to acceptance is 'normal' ? I actually feel like I am losing my mind, lol.

    I think another aspect requiring work from me is separating my own expectations of myself from those others might have of me. I take onboard assumed expectations from others when they don't even have those expectations of me. As K says, finding compassion for myself is required. Also, I feel that I need to find a way of 'allowing' myself to be okay with not being productive and not having any purpose other than 'being'. Another thing that is much easier said than done, alas.

    It seems that I have been skating close to the truth with my suspicion that I don't know how to live. Whether I'm healthy or not is an irrelevance if I don't get any pleasure, satisfaction or sense of feeling fulfilled by being alive. I need to learn how to live, I think.

    Gah! I hate not having answers, lol.

  11. yes, being lost at sea is exactly how i felt. oh, and the loss of mind too!

    maybe it's time to shift from being a 'knower' to being a 'learner.'

  12. it's actually far more interesting...

  13. It's incredibly powerful to know my rambles are making sense, lol.

    Yes, the big old ego.... that needs to learn to pipe down too! Relinquishing being a 'knower' sounds valuable - and painful.

  14. i was a BIG EGO knower!!! it was drummed into me as a child. if you didn't have the answer - you were ridiculed!
    the first time a therapist proposed being a 'learner' instead of a 'knower' it resonated. i knew it was TRUTH. it wasn't at all painful for me - it was HUGELY FREEING!!!

  15. That's good to hear. I just worry that I am far too attached to my mind and place far too much of my self-worth in it. Hence what I've always said about what will happen if my mind goes ;) I guess I don't feel I have a lot to offer other than my intelligence - something else that needs work!

  16. i think the heart of the matter is feeling worthy. if one can feel worthy just for be-ing...all else flows.

  17. hi barry you can't escape me . this is a battle we all face and it is serious but i had to laugh when you wrote that you had to "Master " giving up control . there speaks a control freak . My thing is relating it to living in a new land . with different mores cultural expectations , rites . language . I live in ME land .i really don't live in the western culture . it doesn't apply to me . sometimes i have to venture out , but i'm not speaking that language any more nor am i living by its rules and expectations .Thats why i seem to not join in with ' normals ' too much . i don't' get 'them any more . and i won't put myself through trying to live in their world . and Barry - you don't have to 'do ' anything with Life / it is a gift . live it where ever you are . just breathe, float on the water and live it !! hugs

  18. Control is a real biggy and living with uncertainty. I still find that hard ( I always had a PLAN) but I learnt a big lesson in uncertainty when our son was born and was so ill and turned out to have all sorts of disabilities: there was no warning at all -- normal pregnancy and then born with cataracts, oxygen, etc etc ICBU and the shock of what was the matter with him just grew as the list of disabilities expanded (and it still does ...arthritis now). Whats interesting is that he has to cope with all his stuff, all the pain, the ops, the tests, the sight etc etc and yet he does just get on with it...and he doesnt really have the ability to intellectualise the process like you and me..maybe thats a blessing. He just accepts and gets on ....

    When I got so ill I couldnt go on it was a shock...and I can only see how big a shock in last few years really ...but the others are right...about letting go...just letting it be, because it will be as it will be and the more you fight and struggle the more you waste energy. Thats what I was meaning months ago when you were getting so angry and why I was initially worried when you first surfaced and you often said how you were so proud of your intellect because the way you were putting it implies that you would 'find the answer/key' and sadly it would seem that this 'journey' we're all on just isnt like that.

  19. Di,

    As if I'd ever want to escape you :)

    Haha, I'm totally busted. Good job I already admitted to being a control freak!

  20. Cusp,

    The crazy thing is, you've been trying to drum this message into me for months. About just 'being'. It seems I wasn't ready to hear it before now. I still had a lot to get out of my system like coming up with a crazy plan to write the definitive M.E. guidance manual etc. It's interesting how skilled we (I) are (am) at ignoring what we don't want to hear!

  21. Oh, and you're right. My ego told me my superior brain would find the perfect solution and I'd cure myself. That all you dafties who have been ill for years just haven't been clever enough to work it out yet, haha.

  22. B, did you ever read this?

    was partly thinking about what you had said re intellect (and partly my own experience) in one bit...

  23. You should have a wizard's hat and a wand and magic us all better :O)

    (hope the above from this morning didnt come across as 'I told you so'...certainly not meant to be so...Takes as long as it takes and it is similar/akin to grief: two steps forward, one back. Its a 'game' of snakes and ladders) x

  24. Thanks K - I must have missed that at the time. Although it feels like right now was the best time to read it - this 'flow' is powerful stuff :)

    I think I genuinely did believe that I would cure myself and share my secrets with others. Bizarre mindset, with hindsight - but then maybe that's how I react to being caged. I become foolishly heroic, haha.

  25. Cusp,

    Nope - haven't at all taken it is a 'told you so' - I just think I wasn't hearing it before. I appreciate the gentle guidance you gave over the months and am glad I eventually worked out what I was being told.