Saturday, December 24, 2016

Thirty Six

Today is my thirty sixth birthday.

A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.
  • I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience. 
    I model a winter lettuce - a woman with a lot of hair holds
    a lovely green lettuce as big as her head.
  • Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.
  • I had written this article last December but it was published this year and I'm very proud of it.
  • We looked after a lovely old border collie for about a month, which was rather nice.
  • I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.
    I model the mermaid's tail - an enormous
    mermaid reclines in a wicker chair with a
    somewhat seasick expression on her face.
  • I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.
  • I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.
  • I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!
  • It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.
  • I have been writing and editing fiction. Just not nearly as often or as enough as I would like.
  • In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it. 
  • Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.
  • My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.
  • I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.
Snuffles the hedgehog - a fluffy brown hedgehog eats from
a dish of mealworms. She was one ill-tempered hedgehog.
  • We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.
  • Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards. 
  • We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around. 
A young blackbird - a brown bird with pronounced beak and
speckled breast, sitting in a bush with white flowers.
  • We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.
  • Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.
  • We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with. 
Two happy people at a picnic bench
with a field in the background.
  • As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.
  • It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.
I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.

Friday, December 16, 2016

On Loss & Chronic Illness - Acceptance

[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]

I managed to do the audio for this but it's not brilliant:


As I've mentioned in previous posts, the Kubler-Ross stages of grief are not about a fixed and inevitable sequence. They are merely common experiences which are likely to happen in this approximate order following loss. However, with chronic illness as with other dramatic and complicated losses, we are very likely to revisit earlier stages.

This is the bad news about acceptance; the first time we feel that we've accepted our loss is undoubtedly a breakthrough, but this is very unlikely to be something that happens once and forever. This is partly why I've been writing about loss and chronic illness a full twenty years since I first got sick. I have absolutely come to terms with what happened back then. I sometimes have to come to terms with what is happening now.

Our dominant triumph over adversity narrative means that those stories about chronic illness which aren't about the search for a cure or heroically raising Awareness are usually about spectacular reinvention: Chronic illness ended my career as a stock-broker but now I'm building a million pound empire by hand-knitting mushroom-warmers.

Reinvention is inevitable but the creation of a new life which somehow mitigates all the problems associated with chronic illness is unlikely. It's a very rare chronic illness which doesn't fluctuate over time. Some are very likely to deteriorate. Some have a good chance of improving to some extent, which is not a straight-forward prospect either. Life circumstances can and probably will change in a way that draws loss back into focus.

It may be you find peace, comfort and creative fulfilment in spending your days hand-knitting mushroom-warmers. But this could happen without making a penny and there's no realistic prospect of replacing a stock-broker's income. It won't get you out of the house or provide the interactions or social standing associated with your previous work. Plus, despite the relative low pressure, knitting good-quality items and selling such knitted items is neither effortless, stress-free nor unaffected by fallow periods.

By definition, chronic illness can't be fixed. But having come to terms with that, it is vitally important to recognise that the life-changing effects of chronic illness cannot be magicked away either. My previous posts have been about how our disablist culture makes it so much more difficult to move through stages of grief when we become chronically ill. This post is about making sure we don't replace all that with some other equally futile struggle imposed by a culture that doesn't want us to let go of this particular kind of loss.



For the first ten or so years of my illness, my energy was focussed on a sequence of rather unhelpful questions:

How can I regain my health?
If I can't regain my health, how can I complete my formal education?
If I can't complete my education, how can I make money when I'm too sick to work?
If I can't make money, how can I stop other people thinking I'm a waste of space?

Ultimately, for me, the answer was the same in every case. At 35, I am in worse health than in my late teens, I have just 3 GCSEs to my name and I've been dependent on benefits my whole adult life. Various adventures in higher education came to nothing. I am occasionally paid for my work but could never do enough to regularly supplement my income, let alone replace the state benefits I receive. We live in a culture where a successful person is generally understood to be someone with a well-paid fulfilling job. By that measure, I am a complete and utter failure.

Of course, I am not and nearly nobody thinks I am. But we do need to talk about status.

Small children are told not to compare themselves with others, but then schools, advertising and often even their parents will ask them to do just that. This only increases as we get older, as we are sold the political myth of meritocracy; the idea that how rich, successful, beautiful and healthy people are is a reflection of their virtues and personal efforts. Or perhaps worse; the idea that this should be the case and if we're not as rich, successful, beautiful and healthy as we deserve to be, then something has gone drastically wrong – either with ourselves or with other people.

People with chronic illnesses don't live apart from our status-anxious society, and circumstances – isolation, frustration, time on our hands – can make status-anxiety even worse than for folks who are busy getting on with other things. The whole game is rigged, but we have even less opportunity than most to even take a punt.

Even folk who are able to work with chronic illness are acutely aware of the scrounger rhetoric which might be applied to anyone who is not functioning at a hundred percent. We hear about the “hard working families” for whom politicians claim to speak (so not us?), as well as receiving the steady drip of advertising and aspirational TV where the most valuable people are wealthy healthy consumers. Even cultural advice around health is status-based; there's a reason New Age magazines promote total silence (bad news for most human brains) as necessary for “true rest”, why newspapers focus on exotically-grown produce your gran never heard of as health-giving foods, when all their nutrients can be found in cheap local veg and cereals. Health is about status too and there's cultural capital to be gained in looking after yourself expensively and elaborately.

Added to this are the dominant stories of tragedy and triumph over adversity which are told about people like us, the supercrip image of every disabled person we see on TV who is neither a villain nor an object of pity. They are geniuses with mental illness, they are blind pilots, they are wheelchair-users who climb mountains. It's bad enough that we can't possibly keep up with our peers, can't work as much as them, can't earn as much, can't do as much in any regard and have far more limited choices around family and relationships. If we start comparing ourselves to the most visible disabled people within our culture, we're in even more trouble.

Of course, we rarely talk about this stuff explicitly; we don't acknowledge the race, so it's hard to come to terms when you have well and truly fallen out of it.



I've not entirely sorted myself out with status. Working makes me feel good. But interruptions to that are frustrating to me not only because I can't do the thing I find uniquely enjoyable and fulfilling. Nor is it even the lack of feedback, which matters too – few people write only for the page. The less I write, the less I feel like a writer. The less paid work I do (which isn't much at the best of times), the less I feel like a writer. The more slowly I move towards getting a novel published, the less I feel like a writer. And of course my identity shouldn't hinge on being any one thing, but there's part of me that feels that if I am not a writer, I am not anything; I am without value. Which is nonsense and I know it.

I know other people who are able to do even less of the things they are passionate about, or people whose health is much better than mine who lack such a central focus. I don't for a moment think less of them; I know I'm extremely lucky that writing was always there. But this is the nature of status-anxiety; we anticipate judgement in situations where we'd never pass any ourselves. Just the other day, my Mum explained her nervousness about a couple of upcoming social events, in terms of her being “just a school secretary”. She explained that being in her sixties and still working for the kind of pay that a school secretary receives suggests someone who lacks the ambition, drive and intelligence to get further and do something more impressive.

So I said, “If you imagine other people think that about you, what do you imagine people think about me?”

And of course, she didn't imagine anyone would turn their nose up at me or any of her friends or family members who are out of work, or who work as cleaners or in supermarkets; she would be positively outraged at the suggestion that any of us were in these positions because we lacked ambition, drive or intelligence. We apply a different standard to ourselves, but every time we vocalise this unexamined, we risk raising the unrealistic standards of those around us.



One of the biggest problems is that disabled people are conditioned to explain ourselves to others in much the same way we would explain ourselves to doctors or the DWP; there's a reason why we answer rude questions when others would not. I have heard friends explain their conditions and their work/benefit status to strangers in all kinds of circumstances where people didn't need to know about either.

Of course, people respond to the information they're given. If you tell someone you're a jet pilot, they will talk to you about planes and travel. If you tell someone you have Lupus and haven't worked for five years, they will come up with an anecdote about an uncle who had Lyme Disease (it begins with L, after all), a deeply personal question about your condition and a suggestion for work they imagine you might be able to do because it doesn't involve a lot of standing up.

This is bound to make you feel fairly crap about yourself, and reinforces the idea that you are set apart from other people, from some mythical normal world of health and success.

I imagine this is made even more difficult for firmly middle class sick people who don't meet any of the millions of working people who readily avoid talking about their jobs because they're either boring or unpleasant (some wealthier people have rubbish jobs, but they're handsomely paid and respected for the tedium). For perhaps the majority of working people, even when it's reasonably enjoyable and fulfilling, work doesn't reflect who a person is, but merely what they do on weekdays to pay the bills.

It is not that people with chronic illness should be ashamed of anything – our health, our work status or anything else - but there's much to be gained from presenting ourselves as who we really are, what we really do, rather than starting all interactions with the excuse we have for not being like other people.



There's one of those inspiration porn memes which features an amputee child running on a race track with the slogan, “What's your excuse?”

And of course it's silly and offensive in ways that don't need to be covered here, but there's a tiny part of me which responds, “I have an excuse. Do I need to let anyone know about that?”

Some people feel they do. As mentioned in my Sadness post, I have come across folks who perform the role cast to them as unfortunate ill person, motivated in part by the mistaken belief that the bullying and skepticism disabled people face is due to ignorance, and enough information can put everything right. I'm not talking about folk who merely discuss their health or even complain about it a lot, but the chronic illness equivalent of those women who perform motherhood – not just talking about or referring to the experience, but placing every topic of conversation within that context, vocalising the most mundane aspects of it, demonstrating how they're doing the right thing (often elaborately and expensively) at all times. Either involves a lot of generalisation; motherhood feels like this, life with chronic illness feels like that. And while the performance of motherhood tends to exude positivity – it's the toughest job in the world but the most rewarding! – the performance of chronic illness is about suffering; it's just the toughest damn job in the world.

It is an ongoing sick note to the world and of course, that answers the issue of status: I would be doing amazing things if I was not ill, but instead I'm doing an amazing job of being ill, fighting it and documenting it to inspire and inform others. And this can be really difficult for the rest of us to be around.

It contributes to a culture where disabled people are defined by our impairments and non-disabled people believe they have a right to expect a moving and detailed account of our lives and suffering – non-disabled people get to keep the power. Bullies get to keep on bullying.

Yet beyond this, even though I am acutely conscious of these politics, when I meet with such performances, I find myself doubting my own perspective on illness. I've always managed to be reasonably upbeat but at this point in my life, I find myself particularly blessed; I am married to Stephen, I have some great friends, my family relationships are the best they've ever been, I love my home which has a garden and the garden has hedgehogs living in it. I have some big health-related frustrations impact on my work – especially this year – and upsets and worries occur from time to time, but otherwise, I'm really enjoying my life.

Stephen has always enjoyed the Eurovision Song Contest and because I'm so cool, the first time I watched it with him, I kept thinking, “I can't be enjoying it this much. Not really. There is nothing cool about this. Maybe I am only enjoying it ironically?”

And in the same way, when confronted by people whose mission it is to let the world know, in all their interactions, how an illness like the one I have has ruined their lives, there's a part of me that thinks, “Maybe I'm kidding myself? Maybe it is impossible to be as content as I think I am?” After all, these folks have much of our culture on their side; we're not supposed to be happy.

But louder than that, there's a part of me which thinks, “Maybe other people think badly of me, because I don't do this stuff. Maybe when I'm not around for a while, people just think I don't care about them, that I'm busy with other things. Maybe people look at how little I achieve and assume I'm just lazy. Maybe people think I'm a scrounger. Maybe people think I don't look after myself properly because I don't detail all the boring ways I look after myself.”

And of course, this is why people do this stuff in the first place; this performance of illness is, to some extent, what our culture expects of us. If I was a character in a book or a film, the first thing you'd know about me was my medical history; my character or people close to me would discuss it at length. You would see me gritting my teeth in pain, taking medicine, lying about looking unwell and so forth. You would see this because my character would be all about pathos; my illness would function as a reason to feel sorry for me and for those who care for me.

In the face of oppressions, big and small, some folk imagine that sympathy will hold back the dogs. In reality, there's no way round the fact that some people will pass judgement on me given the society I live in. It's very rare these days that anyone expresses anger towards me, but when they do, they always manage some snide remark about my health or the way I manage it. No amount of information is ever going to shut that down.

Avoiding these kinds of people and this kind of thinking is as essential to acceptance as avoiding folks who constantly talk about how fat and hideous they are and what diets they're on when you're trying to feel okay about the size of your bum.





The question I should have asked much sooner than I did was

How can I live the best possible life I can within what limitations I have?

Which sounds obvious and easy enough, but is in fact a tremendously complex question. It demands we look at what our actual limits are - and not in a pseudo-existentialist, the only limits are the ones we impose upon ourselves kind of way. Our health is not only a limitation, but most likely a changing limitation. We all need some money so we need to source this, whether through a new way of working, wrestling the benefits system, relying on a working partner or finding some kindly eccentric benefactor. We need food, clean clothes and to live in a reasonably sanitary environment, so we need some way of making sure that happens. If we are a parent or a carer, we need to make sure that parenting or caring carries on. All these limitations are real, often quite messy and prone to change even when our health doesn't.

And then there's the matter of what is best. If there's any left after we have secured our basic maintenance, what should we spend our time and energy on? The thing that's most fun, the thing that's most fulfilling, the thing that's most useful to the world or the thing which makes us most comfortable materially?

Of course, these are not chronic illness questions, but being alive questions. Everyone has limitations. Everyone. Some people undoubtedly have much easier lives than you or I, but very many people who don't have chronic illness nevertheless face a lot of limitations and complexities on their particular journeys through life.

There's a tendency for people with chronic illness to feel set apart from some mythical well world where everything is straight-forward and I understand that – I have had conversations with friends and family where it's taken me less time to say what I've been up to in a month than they take to report on a single day.

However, acceptance means moving on from the sense that our little piece of the world has stopped turning while everything else carries on like nothing's happened, that sense that separates us from those with different experiences. In the same way, when we finally come to terms with a death, the imposing sense of that empty chair eases; the chair remains empty, but it no longer dominates the room.

Again, this is complicated by the fact that acceptance isn't a happy ending we arrive at just once – with chronic illness, we are likely to experience loss again, our world will once again stall on its rotation. But having reached acceptance already, it gets easier to ride out our inclination toward denial, anger, bargaining and sadness and get it turning once again.