Tuesday 18 September 2012

Life's Crooked Path

I started a blog. But you all know that.

Like tens of thousands of others, I decided to air my grievances in public in the hope I might right what I saw as a terrible wrong.

For 10 years I'd been extremely sick. I think 8 major operations, chemo shots and half a bowel pretty much make that point unarguable. For 10 years I hadn't worked. For 10 years I'd lived with the uncomfortable knowledge that any talents I had, any achievements I'd fought so hard for were collecting dust on a shelf.

I felt that there were terrible flaws in our health service. But the NHS had saved my life innumerable times. Like a bad, bad man you can't quite stop loving, for all it's flaws, I wanted to work within a system I believed passionately in, to make it better.

I felt that my Labour Party, a party I'd supported and believed in since I was old enough to speak had lost it's way. But that party had still achieved amazing things, for all it's flaws, and I wanted to work within a party I understood intimately to make it better.

Ambition? Hell yeah, I've got stacks of it. Ambition doesn't die with each diseased lump of rotting flesh they cut away.

Ambition for what? It's a question few seem to ask just now.

I believed without any doubt that people with "hidden disabilities" were under attack. We were the forgotten casualties of disability, the unseen statistics, the lives denied by the fortunate. I write for them. I write for me. No-one can be all things to all people. No-one should try to be.

I thought that if I could write about my illness, my life I might shine a spotlight on so many millions more, hidden from public view, stigmatised and judged and crushed. Lives that still had great value, if only anyone cared to see. Lives that were rich in human resilience and endurance. Not wasted lives, not "festering" "feckless" "lazy" lives. Hard lives. Painful lives.

But there was a job to do. I've rarely written much at all about my "personal philosophy" - that way lies madness for anyone hoping to earn credibility in an elite, male dominated world. Nonetheless, I've always believed that if you see a great injustice it is you duty, your responsibility to the world to fight it. You might be wrong - certainly many will believe that you are. But if our little lives lead us anywhere, then surely they lead us to our own personal legends?

What do we do when that moment comes? When you realise that everything that came before was simply a signpost to a moment?? How many walk away? How many decide it's too hard or too dangerous?

There are days when I think I must be stupid. When all I wanted to do was stay in bed, look after myself, try to stay alive - and I assure you, my life is mostly about staying alive, (though many will decide that something they cannot understand, have never experienced is mere hyperbole), a moment came and I found that I couldn't let it pass.

And when you suddenly know that you are on a path you must follow, it's funny how you somehow don't get lost. Maybe the air breathes for you, maybe the clouds part when you need that sunshine the most. Maybe you find a strength you never knew you had, just at the right time. Maybe the actors and actresses playing their own roles take their place on the stage by your side. Maybe someone stops you in the street and tells you something strange at just the right moment.

Maybe, just maybe a little magic happens.

If you are wrong, cruel heartless, that may still be your path. I'm not sure any of us ever really know. I'm not sure we're meant to.

But being very, very ill for a very, very long time alters your perceptions. Ambition must be muted, nurtured, modified if it is to survive. I want justice.

I want it from our politicians, I want it from our doctors, I want it from our media. 

Do I want money? Well, who doesn't, but my unusual life taught me that money is a small thing, a pleasant but illusory thing.

I'd love to have a "job", work in politics, maybe write a column, but I accepted long, long ago that that simply cannot be.

I'd love to change the world in some small way, make it a better place somehow. I'm sure we are all born hoping to leave a mark, some small dent on the world that gives this odd reality a purpose.

I hate fame. I hate it's vanity, it's greed, it's exposure. But the path insists that to do the job you must use the tools you find, unexpectedly, along the way. If you are given a chance, given a moment in time to be heard, then surely only a coward refuses to shout as loud as he can? I admit my ambition, admit my flaws, but I don't apologise for using whatever life has taught me.

You only walk the path once. When you reach the destination, all the magic drifts away. The job is done.

If the path leads you to some glory or success, only a fool believes that it is hers to claim. The glory or opportunities that come - if they come -might  make the path a little easier, clear away a few of the stones that litter the way to justice. Sometimes, the goal can only be achieved by compromise or awkward, discomforting empathy. But a fool who keeps her eyes only on the goal forgets to notice the path along the way.

We all seek approval, we all hope that there will be friends along the way who will help us to clear the path or carry on our way. But friends can turn enemy, some will speak of love and support yet manage only to destroy or undermine. It is the way of things. Learning to trust your true friends is hard. Accepting support to achieve your goals is often unpleasant, but if a "spoonie" life prepares you for anything, then it prepares you to value the constant few and accept those who drift away without judgement.

And so I will write. If I have anything interesting to say, people will read it. If not, I will still write because it's all I know how to do. All I have ever done.

I will lobby as I write, I will berate, implore and cajole. If I am asked to reach a wider audience, I will be grateful. If I can possibly find the strength to travel, or speak or debate, I will. Few will hear of the times I simply can't. I will do what I can as well as I can. No-one can do more than that.

I will win small battles. Long ago I realised that there are only small battles. There is rarely a moment of pure victory. A life spent waiting for the big win, the glorious moment of perfection might just slip away with nothing achieved. But every battle won leads me closer to a better life. A better life for me, yes! Of course! But if I'm extraordinarily lucky, if the path dictates, a better life for millions more.

I will fight my battles and leave those that I cannot change to others.

We all have a path, but we are best when we find our own way. Our energy is precious and not a drop should be wasted on throwing branches and stones in the way of another. Fight your good fight. If the moment comes, fight it hard.

That is my ambition.


  1. Great post Sue.

    I count myself among those who are too frightened to make a stand. I know you receive large numbers of horrible comments and I am too sensitive to withstand it.

    Also I have been in counselling and a lot of the reason I was having counselling was that I am so fearful of a future in this country while being disabled. It pushes me deeper into depression.

    And guess what we agreed, my counsellor and I? To "just not think about it". Obviously, were I to campaign, I would be thinking about it all the time. Indeed my counsellor wondered whether I should stop following campaigners on Twitter and keeping up on news of welfare reform. I explained that I felt it would be "neglectful, somehow" to do that.

    I also have a condition that leaves people wondering why I'm unable to work. Some friends don't get it. They see me when I'm well but what they don't understand is they ONLY see me when I'm well and not on the many days when I'm unwell. This used to make me very frustrated and angry. But I think I am learning acceptance now.

  2. You write with great integrity. Thank you for carrying on. I was shocked to read some of the comments made by some unfortunate people on your blog recently but I'm sure with time they will find another subject for their hatred and move on. It takes great courage to express yourself so truthfully, as you do and to put yourself in a position where you are so vulnerable to criticism. So thank you again.I shall continue to appreciate and enjoy reading your blog.

  3. Great post. Thanks for all your hard work.

  4. I am with you Sue. I will name myself as I have nothing to lose.

    This Government are engaging in a mendacious act of social engineering which I find deplorable. I thought the Thatcher Government was bad enough, but this one is worse. It is actively undermining the vulnerable to set those on low wages against those who don't have work for whatever reason. I believe they want to create a mindset that will accept work at lower wages or face demonisation. This Government have clearly actively used demonisation to set up groups for mass derision, then come up with a "solution" for a problem they arranged in the first place.

    One of these groups is the disabled/chronically sick. The myth was that there were large numbers of scroungers in this group - not true! The masses swallowed the myth and the result is disabled hate crime. I hold this Government responsible for that. This Government's solution is to "reform" welfare payments to root out the scroungers (who mostly don't even exist). In doing so they are changing the rules to reduce payments to those who desperately need them, or take them away entirely! No care or concern for their suffering, not a jot!

    I have chosen not to claim benefits because I know what a minefield it was even before the tinkering began. I am in a financial state where I have a modest and adequate income. My health is such that I don't get to spend much anyway. I hear time & time again of those who cannot manage to have even the most modest lifestyle on the benefits as they stand and are living daily in fear of what they have being taken. People who are already suffering.

    Sue has been standing up for these people, both individually and collectively. I admire her greatly and find it astonishing that someone under the cloak of anonymity sees fit to attack her on this blog. Others bloggers who pose questions arising from the actions of this Government have been similarly attacked. Co-incidence?

    I am Spartacus and my name is Jan O'Malley!

  5. You’re doing a grand job sue so stick at it in a whole load of political hogwash from the MP’s and lords you’re the only one along with Sonia Poulton who understand the wide picture and seeks justice for the long term sick and disabled

    why a mp can’t see it is beyond me but then so is knife crime and murder on young people

    Maybe the public are just so selfish with their me me attitude and it could well be the days of being able to get a more balanced government have passed

    All i know that without the likes of yourself fighting for fairness we the sick and disables might as well give up as in reality there is no one in society today can fight our corner

  6. Thank you Sue, you continue to be a huge inspiration to me. I'm so grateful that your talent and courage has given a voice to so many of us.

    I think your troll(s) are people who must have received no love and care in their lives and who now have no love and care to give to anyone. Only someone devoid of emotional attachments could want a society that doesn't care for and support its vulnerable members. Pity is the best response to their vileness.

  7. Keep gong Sue, you're doing great. Don't let them beat you!

  8. Inspirational Sue,though in keeping with the current practice of apathy...i'm going to ignore the 'naysayers' without the guts to say things except from behind a cloak of 'invisibility and anonymity'...their words carry nothing postive or tangible. 'Out foul Spot..begone!'

    Your words and your talent for the written word and deeds, give much comfort and succour...without your guts and determination to do and be seen to be doing 'the right thing'

    I Salute you Sue...A True Spartacii...

  9. Sue

    While I agree with you on the need to stop what's happening to the NHS and the welfare system, I think your believe in the Labour Party as the instrument to achieve that is mistaken.

    The Labour party is rarely now the party of the working classes, those without protection in life and the needy.

    It is a party of careerists, they get to be MPs with no more experience of the life most of us lead than the ConDem cabinet. Most of the current ills with the NHS and the Welfare system were not only brought in by Labour, they are still committed to keeping the changes.

    We can see that when Labour politicians are voted out, suddenly they are employed by a friendly local authority for £50K a year in an job process that seems less than open.

    People still don't know how the votes went in the leadership election in Scotland, it is that opaque and, quite frankly, it stinks of keeping the cosy wee cabal going, and sod the wishes of the membership, never mind the electorate.

    You have to find someone else to help you out, link up to the National Health Action Party or the like, because Labour is full of over-privileged right wingers who just don't care, or only as far as the focus group and the triangulation tell them to care

    1. i fully agree Robert labour are not the party they once were where you had the likes of Michele foot around sad to say and they cant fix the future for the vulnerable as their age group is to young they like the conservatives haven't the wide world experiences needed for today like understanding the needs of others first before themselves

      Foot is remembered with affection in Westminster as a great parliamentarian. He was widely liked, and admired for his integrity and generosity of spirit, by both his colleagues and opponents

      and that my friends is not how it is today with no mp's regarded by their peers and integrity and generosity nowhere to be seen or heard

  10. Thank you Sue, you write so beautifully. I know only too well how a chronic condition can, on the one hand, take away so much and yet, on the other, send you down an unexpectedly challenging and rewarding path. Don't give up.

  11. Never give up Sue! I personally would now be lost without your words. They offer me hope and I know this is the case for many more than disabled people. A thousand thank you's and a God bless for you and yours x

  12. sue I agree with everything you say! I've always stood up for justice, except that now age and infirmity put paid to that. I shall always be grateful for the fight done on my behalf by others.

  13. Sue you keep going when the going gets too tough for most. You are an inspiration to so many. You are one of the people I refer to in this blog post Where is My Voice? http://donttakemyphotograph.blogspot.com/2012/09/where-is-my-voice.html?spref=tw . Where I had to stop because of my illness, you fight on through. I wish that there were more like you, I wish I were more like you.

  14. Sue, I've been reading your blog every day for maybe two years now. Recently, there have been some depressing comments from people who are clearly having issues with their personal evolution, so I suppose we must make allowances for them. Please keep on doing what you do so well, it means a lot to people like us.

  15. This comment has been removed by the author.

    1. This comment has been removed by the author.

    2. Not being computer literate I seem to have accidentally removed 2 posts from the blog. The first said that I admired Sue's ability to rise above some of the nasty anonymous posts, that not all the anonymous posts were nasty, and it is possible that some people, for whatever reasons, may prefer to remain anonymous.

      I also said that I hoped Sue's actions would not be seen as courting popularity.

      My second post was asking why there was a delete remark against my first post. Confused? I am!

  16. Sue your words are inspirational. Stay alive, stay well and keep writing!

  17. Hi Hollie

    That's a really good point. People can still stay anonymous by using a pseudonym - that of course is perfectly OK

    All it means is that someone has to register some kind of details, so mostly, ppl won't go to the trouble if they are a passing troll with no real interest in the subject other than causing pain and hurt.

    People with genuine criticisms can then make them - either in their own name or by using an "anonymous" pseudonym.

    If someone registers who proves to be very obviously unreasonable or libellous or threatening, they can be blocked this way.

    However, to give people some idea, I think I've only ever removed three or four posts from my comments and they were all violently aggressive and one could have got the author ( not me) into awful trouble.

    I don't believe in moderation unless absolutely necessary - normally trolls give me my best ammunition by showing more moderate objectors just some of the ignorance and nastiness we come up against.

    As for courting popularity, how can any campaigner do anything else? What IS campaigning if not trying to raise the profile of your cause? If some then see that as promoting yourself, then all you can do is examine your motives every single time and ask if that is becoming the case.

    I honestly believe I am rare in that I want absolutely nothing from anyone. I don't want money, because I'm simply not well enough to sustain "working" to any viable level. I've taken no money from anyone to further their cause ever.
    I don't get paid for what I do apart from Guardian articles and occasionally very very small "thank you" payments. It is so little, it is within the parameters for permitted work.
    I have never EVER asked for money for myself. I asked people if they wanted to do the report, and I put my own financial situation at RISK by hosting the fund.
    I've only ever asked if people want me to attend events that might be genuinely productive and I've always asked ppls opinions.
    A vast % of my expenses for these things has been blagged, borrowed, begged or bargained.
    I don't even have advertising on the blog.
    I hate fame and those who seek it in itself. I can't ever prove that, but I don't need to prove myself to anyone. I will tolerate fame temporarily if it helps to achieve my goal.
    I don't want a job or favour. I simply cannot "work" in the way required. I could NEVER be an MP, not even job share, and I have turned down several suggestions that I do.
    Despite openly supporting the Labour party, I have NEVER been anything but totally clear in everything I say that this is their mess. Tbey started it and I'm ashamed of my party for that. I will do everything I can possibly do - anything I have to - to change the Labour position on this stuff.

    I won't turn this into a blog, because serious readers will see this comment anyway.

    But no-one literally has anything that I want except for this to change. No-one can threaten me because I don't have anything. I can't really even be sued because there's nothing to take.

    So yes, I believe I am in a unique position to "speak truth to power" and keep on doing it until I win. My conscience is clear, and I can't do any more than that.

    People will believe me and respond to me and support me if they see a value and honesty in what I do.

    Everyone else will have to "find their own path"

    1. well done sue your like me a battler to the very end. you remind me of Aung San Suu Kyi in many ways very determined and with the likes of myself been kept housebound for many years back in the middle eighties we both have things to get off our chests

      I am only interested in seeing justice for the families that have had their lives upturned where a family member has been told there fit for work and then died through their illness and for those who have committed suicide because they have felt they cant go on

      Once these deaths are all stacked up on paper it's going to be the end of this government pure and simple as to who will read out the long list of names on the tv is anyones guess but you can be sure that when the list is read out then criminal proceedings can then take place on those responcible and that cant come soon enough and am sure i speak for most who read this blog

      but like in Aung San Suu Kyi in Burma it could take many years for all of the prosecutions to take place and i wont to let it be known that if anything happens to sue i will fight on for her and am sure that is the right thing to do and by us all doing a little we can get justice for the bereaved families over time

  18. Sue I so like your writing, your last comment above all.

    I am not known, but am trying to raise my profile, because I believe that what happened to my daughter was wrong and I do not want it to happen to any one else. I find the whole process of complaining and trying to make the world hear me so very hard. I would prefer to curl up in my little world and ignore it all, except, this would allow them to do the same again. I have no idea if things will change, but I have to try. Lots of people are helping me for which I am truly grateful.

    I will do the little that I can. I had never heard of the spartacus project until last year - if Dani had lived no doubt I would have because she would have been affected, as she lived on IS, DLA and longterm sickness benefit, as well as housing benefit. If even one of those had been taken away she would have lost her independence - she would have hated that. She would not have been without a roof, it just would not have been her roof.

    I support everything you do and applaud your honesty.


  19. A few points still unanswered by the benefit crowd

    1. Why is the benefit cap so much higher than the average income and benefits are tax free?! Does work really pay?

    2. Why are people on benefit living in some of the most luxurious areas of the country that working people can only dream of?

    3. If benefits are so bad why are millions desperate to stay on them and wholly dependent on them. You only have to look at our friend orla on panorama last week whose response to getting a job was are 'u having a laugh?' but was still happy to spend her benefit on weed and wine. Yes Sue watch her and think whether £1100 tax free a month all expenses paid is perhaps too much to be handing out.

    Humans are the only species on the planet where they think someone else should support them. No problem with those who choose not to work or find some excuse like pumping kids out at age 15 etc but then simply you are on your own. You made yr bed u lie in it. You need to fund yr own life of weed and wine not use other peoples money. Keep your hand firmly in yr pocket rather than in the 'give' position.

    Benefits party is over. Working people have had enough of seeing those that do nothing having better lives than them, living in better houses than them and having a guaranteed source of income i.e the state year in year out!

    1. I suggest you stop reading the tabloids. Daily Mail is it?

    2. I am one of those people who work and pay my taxes etc - I would expect that should I become ill and disabled that there would be a system in place to make sure that I am able to live without starving and have a roof over my head - if you were ill or had an accident that precluded you from working would you like to live like those poor souls in the third world? In a civilised society we do civilised things like looking after those who are unable to look after themselves - try a bit of empathy - walk in their shoes before criticising.


    3. No-one's going to answer your questions when it's so obvious that you don't give a toss about knowing the truth. Try doing your own research instead of lazily parroting what you've been told by multinational corporations with their fingers in every pie.

  20. Sue, if you've managed to read past the spam I just wanted to add my thanks and support. I am one of those who goes quiet from time to time, partly to maintain my sanity and partly to support my health. I am enormously lucky in having received some of the the right medical support in time to keep me in work, and I'm being selfish in conserving energy for the things which should keep me going.

    I don't know if you realise what a difference you have made to thousands of people. You've given hope to some of us and understanding to others. You've also given us specific guidance and ideas which has made us feel we are helping in some way.

    You've inspired us when hope has been lost and you've directed us to the next goal when a success has been achieved. You're a true leader. I really wish that some people with the health and energy to be active in politics would read your blog and take away examples of what they should be doing.

    Anyway, I hope you get some better health help soon. If there is anything which you think that Spartaci could usefully do in the coming weeks and months, please let us know.

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