I'm twenty one years old, living on borrowed time and documenting it all through a lens.Ask.
I don’t know if that title sounds upbeat or upset, but I’m not a happy bunny. I had respiratory clinic this morning, and I realised that I didn’t really know very much about my lungs, so I asked a bunch of questions, and now I understand a lot more.
When I breathe, it takes me much longer to exhale than normal people (example: if you breathe once every five seconds, and a normal person expels most the air they’ve inhaled in a second, it takes me three or four to do the same, and upon exertion, one inhales more often, but I can’t exhale very much air before I have to breathe in again). Also, my lungs don’t process oxygen as well as they should; only about 60% of the oxygen I breathe in actually gets exchanged, so the breathing I am doing isn’t as efficient as it should be.
There is nothing we can do but hope they don’t get worse. What I believed, that lung GvHD was reversible, was wrong. They will never get better. And that is it.
Why are women’s magazines just as hung up on portraying only young females as men’s magazines are?
All that flaw-seeking in women’s magazines is rooted in female fear of ageing, writes Deborah Orr. Photograph: Chris Lobina/Rex Features
How should women be looked at? It’s a question that is constantly debated but never really gets anywhere. No wonder. It’s a weird question. Yet there’s no denying it’s also fundamental. For some, the answer is that women simply should not be looked at.
The solution is the burqa, or the veil. Muslim feminists can be persuasive when they insist it’s a liberation for women, the hiding of their faces and bodies. They will point to the mass of highly sexualised images in the western media, and ask if that’s really such a wonderful thing.
Lucy Kirkwood, in her Royal Court play NSFW, explores that territory, too. The first half of the play is set in an office where the work consists of creating images that are Not Suitable for Work. Doghouse is a fictional version of Nuts or Zoo, a magazine whose raison d’etre is publishing photographs of their readers’ topless girlfriends. No one who works there bothers to hide their contempt for the readers or the girlfriends. But it’s a free country, and if men want to ogle and women want to be ogled, why should they not facilitate the activity? It pays the rent, while these ambitious yet rudderless young people wait for better jobs in better publications to come along.
Sure, there’s a bit of a crisis, when their readers’ girlfriend of the year turns out to be 14. The staff all agree this is indefensible (and also that they too are the victims, because they were lied to). But the point is made. If the production and consumption of sexual images really is such harmless fun, why is there such strong consensus around the idea that some people are too young, too vulnerable, to take part in it? The visceral conviction in our culture that minors need protecting from this sort of exploitation is prima facie evidence that it is indeed exploitation, and that taking part in it is an important decision, not a trivial or casual one.
Later in NSFW, the action moves to Electra, a fashion magazine, where the young man who got fired over 14gate is seeking a job. It’s made clear to him that here it’s important for him to inspect women’s bodies, too – this time for flaws and imperfections, however tiny, not “sexiness”. Is a woman too fat? Too thin? Does she have blemishes on her skin? Is her hair too dry, or her outfit too tasteless? Has she had some “work” done? At Electra, there is a very particular belief about how women should be looked at: critically, mercilessly and contemptuously. Why?
Because that’s what the readers – women – want.
Again, it’s well rehearsed, the debate around the impossible images of women that the media promotes, the crazy idealisations of extreme slenderness and airbrushed grooming, the constant monitoring of women in the public eye. Does it cause women to be insecure about their looks? Or is it insecurity about their looks that makes women subject each other to this scrutiny?
What does more harm? The stereotypical ways in which men look at women? Or the stereotypical ways in which women look at women? One thing is for certain – clothed or unclothed, it’s how women look, not what they do, that is most obsessed about by the media.
There’s no great mystery about the relentless focus on personal presentation in women’s media. It attracts advertising, and lots of it. There’s no profit in persuading women they look fine without makeup, or that being “on trend” is of no practical value in a piece of clothing. There’s no profit, and there’s not terribly much enthusiasm. The dressing-up box in countless family homes, the joy with which kids embrace fancy dress, tells us a simple truth: clothes, makeup, hair, nails – it all really is harmless fun. Or should be.
Because there’s a disconnect here, too. There is certainly consensus around the idea that a photograph of a topless 14-year-old should not be published. But a 14-year-old in fancy dress? That’s different. When the child actor Elle Fanning posted a snap of herself on Instagram, dressed up for Hallowe’en, the Daily Mail bagged the picture and ran some copy alongside it, suggesting that Fanning “wasn’t afraid to flaunt her curves for the camera.” In the post-Savile climate, it’s hard to see why it’s acceptable to assume that any young woman wearing clothes that don’t hide the shape of her body could only be doing it to “flaunt her curves” and appear sexually attractive.
Britain is currently engulfed in scandal about abusive paedophilia. Everyone understands what paedophilia is and why it is dangerous and perverse. But this might also be a good time to ask whether more generally pervasive ideas that link attractiveness to sex and sex to youth are a bit dangerous and perverse as well.
Certainly, all that flaw-seeking in women’s magazines is rooted in female fear of ageing. Because a funny thing happens to women as they age: how we should be looked at stops being an issue at all. If you don’t look young, you don’t look sexually attractive, so you’re not worth looking at. It’s ridiculous. It’s reductive. It’s shallow. It’s stupid. But it’s something women live with and dread. Quite unnecessarily.
The truth is that if women wore beautiful clothes because that pleased men, then Vogue would be read by men, not women. Women like lovely clothes and makeup in much the same way as they like nice furniture and good interior decoration. It’s not about sex. It’s not about youth. It’s about craft and beauty.
So why are women’s magazines just as hung up on portraying only young females as men’s magazines are? It makes young women insecure because they know they are subject to harsh scrutiny. It makes older women insecure because they understand that the scrutiny only gets harsher, until, most harshly of all, it is rendered obsolete. And it’s all bound up in the idea that attractive means sexually attractive, which means young.
How should women be looked at? Not as if they are calendars made of sex-flesh, with their acceptable era beginning towards the end of February and ending in May. It’s bad enough that men are encouraged to regard women in this way. That we so enthusiastically accept invitation to do it to ourselves is just woeful.
The clock is broken. Everything points backwards. It is a truism that these are, for women, conservative times. Female unemployment climbs, equal pay stalls, employment rights die, female representation sinks and, to distract us from the long slow walk back to the oven, we have a “debate” about the “morality” of abortion, which makes women feel uncertain about owning their own bodies, even if, compared to men, they own little else. (Abortion makes me sad, say some male commentators, shedding inky, self-righteous tears. Well, why not make others sadder with your more important sadness? There can be no democracy in a woman’s body.) Popular culture seeks always for coherence, and so it goes backwards too. Were the James Bond of 1962 – a grotesque punning sex addict who used to pass for charming – still alive, he would slide right into our regression. The Playboy Club is open, for martinis and caressing of tails.
Can it be coincidence, this monetised fetishisation of Happy Housewife, or is it a genuine plea for a return to the olden daze? Not everyone who makes culture is stupid: in Mad Men, Betty Draper misery-ate, and got fat and wistful. But most flee nuance when discussing women. Consider the evidence – for instance, television. (Let us ignore cinema, which is insanely binary. Men are now, on the whole, superheroes, while women are either sluts or “moms”, so there is nothing to discuss.)
Television has two stories now – the micro-fetishisation of ordinary homes and the macro-fetishisation of Downton Abbey, which is a large and desirable home, occupied by an earl and his dog, whose name I forget. The first is all about making a home that a family can live in, happily and conservatively: there are no mad wives in these attics and if there were, Kirstie Allsopp would knit them a matchbox and a noose. Except Allsopp’s charming cottage is not homemade. It is made of money.
Inside this idealised home there is a cook, ideally an amateur baker. Baking is exciting right now – is this another coincidence? As women leave the workplace in record numbers, there must be something capable of intense romanticisation to greet them as they kick off their heels and realise the ceiling really was made of glass, not sugar; something to remind them that female poverty can always be prettified, just as the countryside is prettified by people who live there only on weekends.
More than 6.5 million people watched the final of the The Great British Bake Off this week, a jump of almost 2 million viewers since the last series. Oh, it was lovely, so attuned to the New Patriotism of the jubilee and the still warm royal wedding that I expected a cake in the shape of Catherine Cambridge’s clothing allowance. One cake celebrated the union of England with Scotland, Ireland and Wales; another a family reunion, and all were eaten at a fete among sodden bunting in the wholesome British rain.
Anyone who thinks the BBC is always progressive, and should be expunged for not rabbiting the politics of the right, should look at its lifestyle programming. The finalists were men, it is true, aching at the complexity of fondant fancies, but watch the credits. Those hands yanking cakes out of ovens and sticking raspberries on cream? Female and wearing wedding bands. In response, sales of baking goods rise, and the Women’s Institute reports 50,000 new members in the last three years, seeking Betty-esque skills to fill the hours they used to spend working and earning and living autonomous lives. Other cooking programmes sell the fantasy. Nigella Lawson used to be a newspaper columnist. Now she appears in Nigellissima, sucks her fingers, humps the fridge.
On the other side, Downton Abbey lurches on; more people watch it than Newsnight. It is currently broadcasting in more than 100 countries, which makes it our biggest cultural export after the monarchy, which feels right, because the Queen and Downton Abbey belong together. Downton Abbey was always a moan for feudalism and, three series in, it hasn’t changed. Current storylines include a prostitute giving up her child (an unfit single mother, full of self-hatred and regret) and the death of the daughter of an earl (in childbirth!) presumably as divine punishment for marrying the chauffeur. Live by transgressive sex, writes the creator (Lord Fellowes, ennobled for services to regression, 2011) – and die by it. Private Eye likes to stick coalition politicians’ heads on the Downton Abbey cast puff shots. They aren’t wrong.
Pass Fifty Shades of Grey – a woman being spanked by a billionaire, screwed by a man and a metaphor for capitalism – and so to shopping. In a double-dip recession, few businesses expand, yet Cath Kidston screams on, swelling into the abyss alongside frilly knickers, bows and frocks. She is a purveyor of goods in exploding florals. There is no corpse or coffin, no consumptive feminist movement or abortion-loving single mother that Kidston could not cheer up with her relentless happy swagging. Survey all this and what to say? We are all little girls now.
Tonight is Stand Up 2 Cancer on Channel 4, just if that had passed you by. You all know I’ve had it. Twice. It was August 2007, and Dr. Mark Velangi told me that they’d found leukaemia cells in my bone marrow. I had a stem cell transplant from my sister in December ‘07 and things looked good. Then in April 2008, I noticed lumps in my face. Two next to my left eye, and one under my right eye. We went to the eye hospital, when I said to my parents, “Is it bad that I’m preparing myself for a tumour?” and it turned out no, it wasn’t. After a biopsy of the largest lump during which I was awake, tests showed that the leukaemia was back, not only in my bone marrow, but manifesting as tumours in my head as well.
The black eye and stitches after the biopsy.
So I had more chemo, and another stem cell transplant from a German chap in July ‘08, as we couldn’t use my sister again because she was too good a match, and I didn’t get any Graft vs. Host Disease, which is when the donor cells recognise the recipient’s as foreign and attack. So we used the German guy, who gave me loads of GvH, in my skin and gut at first.
I was discharged at the end of August ‘08 while still on masses of medication, spent September living in the dark with eye GvH, when I became completely photosensitive and was in constant agony. Then, on 31st of October 2008, I was re-admitted to hospital because my temperature spiked. After that, I didn’t leave until the 11th of June 2009. The infection I was admitted with was just the beginning of the ultimate failure of my liver due to GvH. I was green with jaundice.
It was a shitty time. The bile was poisoning me from the inside-out, and by the time December rolled around, I was on both the adult and child transplant lists (because I was seventeen) for a new liver. By the time I got my liver on the 21st of December, the doctors had told my parents it was unlikely I’d see Christmas. I was at the top of the emergency lists, and I eventually got a liver from an O negative donor, which is very rare for an A positive person. They save the O- organs for people who are O-, but I was nearly dead. After the liver transplant, the stem cells from my liver went on a little trip to my bone marrow, and decided they liked it so much that they wanted to stay, and kick out the German. I’m the only person in the world this whole thing has happened to, which is great for doctors because they have no idea what is going to happen to me, and instead they’re going to write a paper about me. I know they are, because every so often, they take a load of extra bloods in clinic.
By January 19th 2009, I was back on the cancer ward, because the liver ward literally made me want to kill myself. The 21st was my eighteenth birthday. I couldn’t eat the cake or drink the champagne, because the gut GvH had destroyed the lining of my stomach and eating anything made me throw up. I stayed in hospital until June because being in bed for so long meant that my muscles had basically disappeared, and I had to build up my strength enough to be able to move around by myself again. When I came round after my transplant, I couldn’t even lift up my own head. Every movement had to be facilitated by someone else. Physiotherapy made me stronger. I fell down a lot, but I got back up.
The first time I tried to walk with a student physio, I fell down and got the biggest bruise ever to exist. I got back up and finished my workout. I didn’t have a choice.
It took a long time, but I was finally able to go home. But that’s not the end. It still affects me. My lungs don’t work properly because I have GvH there, and my skin is still fragile from the steroids I was on (stopped four weeks ago, yeah!). I travel to Rotherham every month to have my blood spun around in a machine, have a plant extract from the banks of the Nile added to it, damaged by UV light, then given back so my body can heal the damage and with it, the GvH in the cells. My tongue is currently a mass of ulcers because I finally got mouth GvH, and I can finally tick off the final box on Graft vs. Host Disease bingo. I fell down at my school’s end of sixth form ball and had to be carted off to A&E because my skin tore open on my arm and knee, and all the skin on my left palm came off. I fell down in my drive and split my leg open, and saw plastic surgeons for almost a year, trying to get it to heal.
I can’t have children, and that kills me. I had to give up my ability to have kids to stay alive. That shouldn’t be how it is. At sixteen, I should not have had to sign away my fertility. I shouldn’t have had to face up to my own mortality. I’ve come to terms with it now. I had no choice. I am not scared to die. I feel sad about my eventual demise, but only because I know how I’ve felt every time I’ve lost someone (and there are too many to name, believe me), and I can’t bear the thought of people I love feeling that way about me, and me not being there to comfort them. The idea of missing out on the lives of people I love is abhorrent to me.
I’ve lost too many people… Alice, Richard, Harry, Lewis, George, Jaz, Oli, Conor, Jude, Terri, Mark, Jessie, Ruby, Jordannah. All under 25. All dead.
One in three of us will get cancer. This blog could just as easily have been written by you in a few years time. Which is why we need to Stand Up 2 Cancer. Donate. Save your life.