Sunday 16 March 2014

Laptop Heaven

Thanks to the quite extraordinary response to my "Cry For Help" post, I'm typing this from a beautiful, robust new MacBook.

Of course, there's no doubt at all that I chose something very nice indeed to own. It's hard not to be a bit excited, though guilt quickly drowns that out. I researched and read reviews and generally annoyed Steve Sumpter (@latentexistence) all through his trip to the barbers.

But as I'd eaten through two cheap laptops already in the Spartacus cause, I desperately didn't want to be back in this situation, in debt and unable to do what I have to do just a year or two on and wanted to make sure that whatever I got worked for me - but mostly for all of you. I needed something light - as light as it could possibly be so that I could take it to meetings with me. I'm very weak. I needed something with very long battery life so that it would last all day in London without me having to carry a heavy charging cable around. I needed something very simple to use that was as impervious to viruses and malware as possible. I'm not very techy and can't fix things when they do go wrong. Finally, I usually have my laptop on 16 hours a day with up to 30 documents open at once. I often multitask, doing 3 or four articles or pieces of work at once, so the machine I chose had to have excellent capacity.

The response to the fund was overwhelming. Within just a few hours, hundreds of you had given what you could and the target was met and surpassed. I'm honoured that that would never have happened if people didn't believe in me and what I try to do. Of course, there will always be a few dissenting voices. And I know how that feels. I've put everything into campaigning these last few years - my energy, my money, my family time and my health. For four years now, I've done it unfunded and without asking anyone for anything.

Sometimes I've seen others fundraise and it's hard not to feel a pang of resentment.  Most other bloggers have a donation button on their blog or advertising, but I resisted those options. I felt that a donation button would mean that any donations were not public. No-one would know what I get or when or from who. As for advertising, I looked into it extensively, but the good old benefit trap caught me, as it tends to do.

If I have advertising on my site I have to make at least as much as I currently get in ESA and that amount must be reliable. What happens the next time I spend months in hospital with no ESA? What happens if the revenue falls some months because I'm too ill to blog?

I would hate people to think that I haven't looked into absolutely every avenue I could think of and more before I would dream of asking for other people's money.

But when those trolls who know nothing about me say "If you can go to all those meetings, you can work" it is worth reminding people who haven't been reading my blog from the start, just how ill I am. My crohn's disease is very severe and I get no remissions. I've had 9 major operations to remove 36 tumor like blockages. You all have 4 metres of bowel, I have 1.5 left. Below a metre becomes "unviable". I've resisted asking what that means. I weigh 6 and a half stone and am constantly malnourished. I have to take most of my meds by injection (which I give myself) as I can't absorb them properly and I average about 5 weeks per year in hospital.

My doctors would like me to give up and be fed through a tube into my central vein while I wait for a bowel transplant. I vomit regularly - sometimes 10 or 20 times a day.

So how CAN I campaign as I do? Sheer bloody mindedness. Yes, I'm often in pain beyond most people's imagining. Sometimes I give speeches bombed out of my head on opiates, hoping no-one will notice. I've run campaigns, written for national newspapers and given radio interviews from a hospital bed. If I'm too ill to travel, Dave makes me a bed in the back of the car and I sleep my way around the country. It's incredibly tough - in fact I can't think of a word to describe what it is.

But it's my choice. I don't ask for anyone to pity me, in fact those that attempted it would get incredibly short shrift. When my kids moan "It's not faaaaaaair" about something (as kids will do) I say to them all the time "Life's not fair, don't expect it to be."

I can sit home fighting to stay alive or I can push my self now and then to do something valuable at the same time. I'll feel just as ill whether I'm sitting through a meeting in Parliament or watching The Waltons from my beanbag. After 30 years of a serious chronic illness, I really did decide that "you can get busy living or you can get busy dying." I choose to spend the limited resources I do have trying to change what I see as a desperate wrong. However ill I am, there are so many so much worse off than me. People who can't communicate at all, who have no idea what is being done in their name. People who can never leave their homes, people who have nothing at all to buy food with from week to week.

When we first produced the Spartacus Report, you all came together in a quite remarkable way. We decided, back then, together, thousands of us, that we needed to be heard. We dared to hope, we put our money into producing something that might just win us a place at the table. It wasn't for fun. It wasn't to show how clever we were, it was to say "We're here and we desperately need you to listen to us.  We won't be spoken FOR any more, we want to speak for ourselves. We want a say in this discussion that is deciding our futures"

You trusted me to use those funds wisely and produce something powerful, and we did.

But we were victims of our own success. Perhaps most days it doesn't feel that way as the steady stream of dreadful news and horrific stories overwhelm us. But we were. Politicians listened and they respect us. They invite us to their round-tables and conferences. The media respect us and ask us to speak on issues relevant to disability and social security. Other groups and charities respect us and ask us to advise them or speak at their events.

And from that original frenzy, it never really slowed down. In fact it built and built. More reports were produced by other Spartacii. More subjects covered. More exposure for our issues. The media started to write about our fears more and more. Politicians started to blink into the light and ask for more information.

At first it was a meeting now and then or a speech to a conference every few months. But as the momentum has built - and momentum is the single most important thing in any campaign - so the demands have grown. Of course I'm not the only one to go to these events, but overwhelmingly, people want "Sue Marsh" because that's just the way things go. And "Sue Marsh" finds she just can't turn down things that are hugely important. How can I say no to meetings at parliament or the Lords which just might make a big difference? How can I turn down the chance to let thousands more people know at a rally or demo? How can I refuse to write articles or give interviews? When a chance to be heard was what we fought so passionately for? 

So for fours years, I've just said yes. However ill, however exhausted, however poor, somehow, I've got there, usually with the unflinching support of Dave and my boys who have never once in the whole time said "we can't afford it" or "don't do it you're just too sick". They know me better than that.

I remember a few months ago, my Mum asked, as most ask repeatedly "When are they going to start paying you for all this" Without breaking his stride on Minecraft, my 5 year old just said "Naaaaaan, she just has to do it, it's not about the money".

And so despite sorting out my own benefit trials, we stayed poor but fairly happy. But now, after all this time, people ask me to do more and more. I need more and more physical support to get anywhere at all. I can't manage public transport on my own any more, doubling train fares, I use a wheelchair and need someone to push me where I didn't before. That means someone ELSE giving their time and their energy unpaid.

And expenses are not paid when they should be. Not only do people expect you to do almost everything for free, they then take months and months to reimburse you for the cost of it. So out of a relatively tight benefit income (though I never forget I'm much luckier than most as I get adequate support and Dave works) we were constantly "subbing" huge corporations, leaving us hundreds of pounds out of pocket every month. Not now and then, every month. I felt it was my contribution all the time I could do it.

But since last year, I'd had to borrow money from my Mum and the amount kept creeping up. I couldn't pay the rent one month and had to put it off, leaving us playing catch up constantly. We were living day to day and often there was no money for the kids to go to their clubs or get new shoes. I was robbing Peter to pay Paul all the time.

Still I didn't ask for anything from anyone. I became the queen of blagging, usually finding a way to get my trips funded by making other appointments for the same day if I could. But however resourceful I was, I just couldn't get it all paid for.

Regular readers will know I tried to step away. I was so exhausted, so drained and increasingly poor, I thought it might be the best way. But the invites kept coming and the attacks were undiminished. I found I couldn't stop even if I wanted to.

Around Xmas, the fan packed up on my laptop and after about 30 minutes it would shut itself down mid blog or comment. I tried my best to ignore it and carry on. I certainly had no money to get it fixed. I'd already had it fixed twice at a cost of £120 and I just didn't have it. The hard drive had been on it's last legs for some time. It kept doing all sorts of odd and infuriating things. Then, I got malware and despite using Malware Bytes and numerous other attempts to sort it out, it was a bad one and just kept writing to my hard drive increasing the ads and slowing down the system to a standstill.

For a month, I'd been trying to blog and write articles from my iPhone, but the typos were ridiculous and it took forever. But I was in a catch 22. By the time I gave up and asked you all for help, I was owed £360 in expenses and owed hundreds to my Mum. I couldn't afford a new laptop or even to get the old one fixed. If it was just the expenses, I might have struggled on, if it was just the laptop I could have saved for a new one. But both seemed to leave me no way out.

Someone said to me on Twitter "You don't have to explain Sue" But I do. I absolutely do because this is your money and your cause and time and again you trust me to keep fighting in your name. Of course not every disabled person sees things as I do, as we do. I wouldn't dream of thinking for a moment that I speak for all sick and disabled people. But the thousands who read this blog every day seem to support what I say and try to do. If they didn't they wouldn't want to help me at all, certainly not with their own precious funds.

All the while people want me to carry on doing this, I'll try to continue. All the while politicians ask us what's wrong and how they could help, I'll carry on trying to explain to them. All the time people ask me to speak at their conference or festival or event, I'll do everything I can to get there.

I put £120 I had saved towards the MacBook (not much I know but the best I could do) and once I've paid the debts expenses got me into in the first place, there should be £500 left for future trips. I have an appointment to set up a whole new bank account on Monday, just to keep the funds separate so that they can be used as a "kitty" taking the pressure off my boys. Where people pay me a little extra, it can go into the account, where I have to fund my own trip to London it can come from that. It won't last forever, but it will help more than you could all ever know. A bit of breathing space to carry on.

So "Thank you" all. No-one asks me to do this, but they support me nonetheless. I will always, always use your money and trust with care, I will stretch it as far as I possibly can and I will always try to act as an advocate you can be proud of.


  1. The way I see it, the biggest difference between "us" and "them", is that we have been shaped by need and circumstance to account for every penny we cost.

    Do politicians have to justify £50 spent on a breakfast which they claim back from the state? I don't think they do. But we've been trained, over the years, to have to prove our worth and justify the "burden" we place on others.

    From where I stand, you have earned every penny of those donations ten times over, and more. You are working. Working a lot harder than many others in this country, and a fair society would compensate you for your efforts which are in aid of the nation. That we don't live in a fair society is pretty evident at this point, but please. Allow yourself this and do not sell yourself short.

    That we have donated money to support you is not an act of charity. It is not you begging. It is but a fragment of the worth you hold, and even though that worth is not recognised by big companies and the state which wishes to erase us, it is something each and every one of your supporters recognises.

    You represent me - and others like me - far more than any of the MPs who claim our taxes and spend them on frivolities and second homes.

    1. You have really summed it up and I agree with everything you say.

  2. Thank you for explaining Sue, but there really was no need. We have faith in you and are extremely grateful for everything you do, despite the financial, practical and health difficulties you face every minute of every day.

  3. I don't understand this select profile thing..I agree with J.Hill and I am glad you are so happy with your laptop.I wish there was some way you could receive payment,a salary,including long term sick pay if necessary,you are working as a consultant there should be a way it could be done?All the organisations you are helping creating an income for you,or a fund?As J.Hill said twitter would have paid you,I believe 10 times the amount you asked for.I don't want to cause pressure,I think you deserve to be free of financial anxiety..I think you deserve the best..because that's what you give..I am in the "you don't need to explain"brigade.Jackie Scoones xx

  4. So glad you were able to get a decent laptop and pay off some debts :-D

  5. The work you do cannot be measured in monetary terms. You deserve all the support you get and don't need to apologise for asking.

  6. I was glad to be able to donate, I feel for you and your family, I'm in a similar situation, I'm ill and my husband works hard to support me and looks after me, we only have a tiny bit more money because we don't spend it all campaigning to help others in the same situation so it feels right to donate. I would happily donate a little every month to keep you and your family going. Thank you for doing what we can't! x

  7. Thank you for explaining...but you really didn't need to :D You are a star and an inspiration..and you speak for me...and for all of us. We are all so proud of you and the more well-known and respected you become, the greater the impact you can have on the campaigns and the greater input into the changes that so need to happen to put things right again. Let us know when you need cash again in the future ...I'd gladly spare you a little out of my disability benefit. Keep on working with the power of truth for equality, inclusion, justice and our human rights while your body day we will all meet up and have one hell of a victory party !! Be blessed lovely lady :) Julia Smith XXXX

  8. We do trust you Sue. We know that you know that.

    There are a few of us who want to be where you are and are trying hard to get there. Those of us learnt from you. Remember that, please, and I hope you see it as a good thing.

    You have every right to fundraise for anything you need, please put the guilt out of your mind, we all understand.

  9. You deserve all the support you get. Representing people is both a burden and a privilege, hard work and worthwhile. Just be careful on the 'life's not fair' meme. It can be (and is) used to justify the terrible things being done to people.

  10. Actually, I don't think it's possible to annoy Steve if you're talking about computers.

  11. People who support you will always support you and will be doing it for right reasons,yes UK is a very hate filled country at the moment and people will be shocked you even own shoes and that you could use the laptop box to live in ,usual race to rock bottom and the trouble with explaining to idiots is that they dont realise there idiots,its whole part of being an idiot ....but while there are people like you who challenge and while there are people who will support and listen you really dont need to explain a thing

  12. I'm glad you have this fund as a buffer for now but I'm sure I'm not the only one who would gladly give a small amount each month to cover your expenses. So when you've set up the bank account for your "kitty" I for one would set up a small direct debit to it, while I can x

  13. You write great articles on here. You provide so much more information than most people have time to go hunting for. So why NOT put a "tip jar" on your pages? A simple message like "I avoid ads for payment on this blog. I do not get paid for this and funds grow ever tighter. So if you find my articles informative or interesting and would like me to be able to continue. If you can afford to, please consider leaving a tip." Or something suitable. Especially if you are creating a bank account that is purely for your activities representing a large section of the chronically ill and disabled I think you would be more than justified in doing so (and I'm usually chronically "allergic" to such things).

  14. Am glad to learn that you got your computer stuff working again. Could you please in the future maybe cover tips on being disabled/citizen journalist etc ?

    1. That's interesting, do you mean about how I started writing and what works and doesn't etc?

    2. yes yes Sue lol also maybe do some short and sweet series of :-

      - How use FOI for researching issues .. do you do use the FOI privately or use whatdotheyknow ?

      - Maybe also review some of the most useful software or websites that are useful for wannabe disabled journalist.


  15. I too would like to give a little each month - it's my way of thanking you for the help you give to me and so many others.
    I'm jealous of the laptop though :) I've always wanted a Macbook!
    So many of us are suffering with all the cuts to our benefits, to our health and to our dignity. You keep chipping away at the wall around the rich government and letting them know that you won't give up. For that I wish I could send thousands! I'd give everything I could if you could break IDS down :), but you'd have to video it for all of us to see and hear.
    Don't forget the bank details Sue.

    1. One day, as his star fades, I will get that chance to sit on a sofa in a TV studio with IDS and absolutely rip him to a thousand pieces. One day. When the press are no longer his lapdogs, and his party hang him out to dry as they did before, we will all spend the best night of our lives as on Newsnight or QT or something I get that chance to lacerate him with facts, destroy him with shame, humiliate him, belittle him....
      Oooops, sorry, got carried away. I wonder why he won't oppose me just now.....

    2. True when IDS is in the Lords you'll get to debate him - in two years time he'll be a non-entity.

    3. IDS has never had a star, because he isn't worth a light.

  16. Knew that you would end up with a supa dupa laptop and really pleased that you decided to go for a Mac book ;-)
    They might be pricey, but the most suitable for you to carry on doing all that you do for us.

    If you ever need us to donate again, then don't hesitate to ask. Small amounts soon mount up and personally I think you're worth every penny ;-)

  17. I was going to say "enjoy your new laptop" but then reflected that it's going to be more of a workhorse than any kind of entertainment item for the most part. But, anyway, I think many of us know the feeling of trying to work with tools that are battling against us and so let's hope the new lappy proves to be a joy to work with.

  18. At the end of the day any money we donate to you Sue is an investment in the welfare state :)

  19. enjoy sue you deserve it :)

  20. You should leave the donate thingy active. People read your blog to enjoy your writing and it is right that you should receive royalties for that.

    That you choose to spend your pay campaigning on the behalf of others is your donation to those who, for whatever reason, are unable to work and campaign as effectively as you.

    I for one, am grateful that you make that choice. But the justness of your cause is not the only reason I'll willingly pay to read your writing.

  21. Sue did not need to plead, when a computer she did need. Through her blog we follow her lead, hers is not a want nor reason of greed. For the sake of others her heart does bleed, to her hopes and ideals we take heed. Her words are an interesting read and she is born of a wonderful breed, to Sue we procure thanks and hope she may forever succeed.

  22. Never feel guilt for asking for this! What you have achieved already and aim to achieve is beyond worth for sooooo many ppl! I have donated and would again for such a cause as this! xxx

  23. I'm glad you got a decent laptop, Sue - a worker needs the proper tools for the job after all. And as you work so hard for so many of us, it actually feels right and proper to be able to help as some kind of small thank you.

    Lots of best wishes to you and your family.

  24. I'm so glad you got the money you needed and the robust, light laptop that's best for what you're doing.

    And I know you feel you had to explain, but you don't have to sound apologetic, you have nothing to apologise for. No pity from me. Just admiration.