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.