One of the most important pieces of advice I was given just two days after diagnosis came from my Macmillan supporter, who suggested I should ask for and accept practical help. It’s grown in a way I never envisaged, through my IT guru – who comes with a leg-shaving guru – to lifts for dog walks, to people dealing with admin concerns that I can’t get my head around.
These acts of friendship and kindness, together with visits and messages and calls and thoughtful gifts, have done more than anything to keep me going through a hideous time of fear and general shite, worsened by feeling fairly horrid most of the time. Little things to look forward to allow me to make it through to the evening, then the night. I also have a swimmy patchwork blanket under construction which I think will be visible from space (more on that another time).
Money, however, was has been an overarching concern. One friend has already helped me more than I can say with a loan, topped up without asking the other day. Then I had a call from Plum saying that various people had contacted her about helping me out in a practical way by donating money to a fund. I felt I’d begged especially because I’ve blogged about it, and refused. Plum being a formidable opponent in a debate on almost any topic (Burgh Island Hotel too expensive? You’re doing me a favour, been wanting to go for 20 years and never had an excuse), talked me round to her way of thinking, which is that people want to give me money and it makes them feel better too; it’s something I’ve done myself, and till recently when I could no longer afford it, I’ve always given a monthly sum to several charities. I know that makes me feel good, and feel that where I can’t do much personally about a situation there’s someone out there who can and they need that money. Then there’s the thought that maybe you could do something, but by handing the money over you don’t need to bother, it calms your conscience. There’s also something about accepting financial help from people you know, (and in this case some people you don’t) based on an illness with all that potential for emotional blackmail, that I find extremely problematic. My decision to blog, warts and all, felt like a part of that impetus.
Eventually, Plum made the point that if I didn’t agree to the fund, cheques were going to start arriving through the post so I might as well give in, let people help me, and make all of us feel better. I capitulated, with the stipulation that if everything by some miracle turns out to be okay, I will return what I can and give the rest to Macmillan.The fund was set up, and it produced an overwhelming response of donations and lovely messages that I could barely deal with. I couldn’t answer the phone to Plum because I couldn’t speak. Not everyone has money to spare, and I worry about them feeling pressure, and I’m sure some people have gone without on my behalf. But the relief of knowing I can cover the bills and not worry about cashflow for a considerable time is impossible to exaggerate, even for me… So thank you for removing that deep worry, and thank you for the big and little acts of friendship which play a vital role in my ability to swim on through the tons of nasty plastic in the sea.
Poverty is on my mind in other ways, not least because I know I have people who can help me, while, many in my situation have neither the resources nor the emotional support. I read some fascinating research on the effects of a severe scarcity of a resource, whether that’s food or money, on decision making. I won’t go into detail here now, but do read the linked article. It’s the reason I bought a bottle of wine on the day in December when I’d just lost a whole load of online marking and any hope of paying the bills. And it’s the reason for giant tvs, pay day loans and fags when you’re out of work. Note too that there’s a government group studying this – so why the hell is the government ignoring their own research?
Yesterday they forced through a cut of £30 per week to a particular form of Employment Support Allowance (ESA) that will affect disabled people directly. Apparently this cut will ‘incentivise’ disabled people to find work. The impact assessment has not been carried out, and the Lords were going to insist is was before reconsidering the legislation. The government used their financial veto to overrule the Lords. My own MP Geoffrey Cox, and Jeremy Hunt, were among those MPs who voted this through, as was Dr Sarah Wollaston, a Tory MP whom I had met in a professional capacity a couple of times in her work as a GP, and for whom I had a great deal of respect.
So, with no evidence whatsoever, the lifeline of financial support for a highly vulnerable group of people has been removed. I can tell you categorically that this nasty, ideologically based (I can’t help but see arbeit macht frei over the gates of Nazi concentration camps) persecution of members of our society will cost all of us in the end; it will cost the welfare of the individuals involved, and it will cost the ambulance service and often the police who go in to pick up the pieces, and the social services already in crisis because of six years of cuts, and the other NHS hospital services and GPs who are trying to manage the complex health conditions that arise, time and time again, because of poverty.
Poor people need help and support because poverty is the cause of their problems. Disabilty causes poverty – try getting a living wage job when you’re disabled (yes, I know there are exceptions, just as there are a few people in parliament who aren’t men). Poverty is not a sign of some inherent personal failure, some genetic or welfare state-induced predisposition to workshyness and fecklessness. Poverty is the cause of it. And to refuse to even assess the impact of such a cut is quite simply criminal.
My friends are wonderful and I truly believe that most people would behave decently if they were in a personal interaction with the focus of their hatred and disgust. Thank heavens I don’t have to rely on the government to support me.
Our regulars as paramedics are the people who suffer from long-term, chronic illnesses, and whose longevity is reduced accordingly by poverty. Some of them are chancers, but why are chancers who are wealthy accepted while those who are poor are not? You survive how you can.
I also received yesterday a letter from DWP, who have at least stopped referring to my need for a Fit Note, and who now want a long work-related assessment filling out to check whether or not I might be able to work at all. Now I have trouble writing at the moment. I can’t control a pen all that well. I don’t know what treatment I’m going to have, nor how it will affect me, till I’ve had the surgery so I can’t tell DWP what they want to know by next week, or my benefit might not be paid.
One more stress, while the government assumes I’m faking till I prove otherwise.
Clearly it’s a travesty that I’m asking taxpayers to support me in my time of need. And some of the taxes I’ve paid over the years have gone to clean MPs’ moats and redesign their duck houses, and pay their 11% payrise last year, and the 1% this year. The welfare state is insurance, insurance against the crappy hands that life deals some of us. Its value is not financial, its value is as a service that doesn’t hound people like me, or add to our already stratospheric levels of stress. If you don’t need it ever (and research shows that most of us get back more than we pay in to the NHS over a lifetime), then brilliant. You don’t expect to get your car insurance back if you’re lucky enough not to crash.
Do I happen to know all the nice, caring people? Are others really that horrible in real life, that they could look someone in the eye and believe that this person deserves to be persecuted and live in penury because a load of super-rich bankers got even more greedy and stole all our money? How have they managed to blame it on those of us who have the bad luck to have hit the bottom?
I wanted to write about a couple of families I knew but with Operation Hunt Saboteur imminent (Friday) I’ve had other commitments to deal with today. So this post is rather ranty, and less personal that I’d wished. I hope you can forgive that. It’s a day of random emotions and no little relief, but also one of anger at what’s being done to our NHS. It’s day one of the junior doctors’ strike. I’m with you, junior doctors.