Ed Fringe

So far my experience of Ed Fringe is one of being left alone while my able-bodied friends go out and have fun.  

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British Summer Time, a poem

Just in the Museum Gardens in York with my translucent skin shining with Piz Buin and lying on my M & Co pashmina with my sarong rolled up to the knees and my fat tits falling out of my strap top while three old women gaze in dis-proval from the shade of a tree.

My brogues and socks and Coca Cola lie beside me.

I hope I get a tan and for a short time

and a cheap rhyme

get to forget that I’m a Brit in summer time.

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The Myth of the Dying Swan

Illness is usually portrayed in media and literature as being soporific – peaceful, if a bit grimy, mostly painted with linen and figures slipping in and out of sleep.  That follows through from the death of Little Nell right through to the clawing but strangely sanitised coverage of Jade Goody’s cancer.  Every movie you see ostensibly about AIDS or cancer in fact shies away from the grim monotonies of a long sickness, favouring weepy shots of pale thin actresses in nightgowns.  It speaks volumes about the squeamishness of the healthy and the general unwillingness to see sickness as it is.  Namely, graphic, painful, inconvenient, long-lasting, and emotional.

For years I’ve had people posit to me that I made-up or exaggerated my illnesses for the sake of giving myself a tragic backstory.  But here’s the thing: chronic illness is not just my backstory, it is also my future.

Today I feel like I’m going to vomit and I am breathless for no reason, and feel like my joints are being pulled out of their sockets.  I am not lying around in white nightgowns on a chaise longue with my hand to my head.  I am perpetually cold, I walk like an old woman and I will probably not live to be an old woman.  There is no sad acceptance about my illness, there is just anger, denial, optimism and fear.  Today is terrifying, I don’t think I could cope with a lifetime like this.  Please don’t let this be the rest of my life.  I can’t make myself accept it.  And frankly I don’t think most people could.

So we need to re-write illness.

There is a lot more about this I could probably say, but, ironically, I need to lie down because I’m in a lot of pain.

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I just googled “How to be healthy with a chronic illness”

And there wasn’t an answer.

I expect that means I should try to write one myself, but I am busy trying to funnel my limited energy into something useful, in my last weeks of university and the first weeks of my production company.  Apart from that, I am exceptionally sick at the moment – my fingers each feel like they’re being pulled out of their joints, my face and neck feel swollen and watery and I can no longer bend over and get up again.  God knows what will happen when my shoelaces finally unravel.

My instinct is that when you have a chronic illness, you have to put much more cerebral energy into being (relatively) healthy than other people do.  I am not talking about curing the chronic illness or even living like you don’t have it, I mean things like “Should I eat more protein or iron?  Will sitting in a different position lessen my pain?” – things that may have worked to ease the pain or at least provide background comfort for other people.  For myself I know that tea is good for me: it can both perk me up when I’m lagging over essays, and soothe my nerves when I need a rest but have no time for afternoon naps.  It is both water and calcium, and even caffeine, which I tend to find is a potent short-term painkiller.  

As far as I can find, there seem to be two large camps for self-care for the chronically ill.  The first is dismissal: people who are always ill are always ill, right?  So why would we gear nutritional information at them?  This isn’t at all aggressive as far as I can make out, its main symptom seems to be a complete lack of discussion on the matter.  Plenty exists to tell you that if you’re depressed you need exercise and Vitamin D, because it generally accepted that good self-care can improve mental illnesses.  But physical illnesses?  Who knows?  Not the internet.

The second is blame: where information is to be found, it is always at some level victim-blamey.  As chronic illnesses typically cause massive tiredness, they can be associated with loss of strength and stamina, which in our OMGTHINANDFIT society, people cannot dissociate from laziness.  So much of the advice for chronic illness is exercise-focussed that it can sting a little to read it.  I don’t mean at all that exercise isn’t beneficial, but it is also harmful if not done extremely mindfully, and with having something like fibromyalgia, part of taking care of yourself is admitting that you won’t ever have what you previous defined as a physically active life again.  The commonly-touted advice that exercise in progressively higher doses will build up your tolerance is good advice, but only up to a certain point.  Pacing yourself and information about how to get quality sleep are missed off most resources.

Until we can have this discussion, I suppose we all need to keep at the trial and error.  I’ll put the kettle on.

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Walking Stick Chic

Today, after many years of resisting, I finally caved and bought a walking stick with Personality.  It’s kinda vintagey green-and-red paisley with a wooden handle, and collapsible, which was what I was really looking for.

Like most people with a walking stick, I really never wanted one.  I just slowly acquired a chronic illness, fallen arches, two breakages and some tendon damage, until one summer’s day strolling round a theological museum with my friend, I collapsed onto all fours crying in pain and had to stay down there for several minutes.  I’d lost use of my feet several times as a teenager, but now there were no parents to bring me food when I needed a few days sitting down, and there was no dignity for a twenty-something frozen in a farm-yard position in the cellar of a cathedral.  It could never happen again.  I needed a walking stick.

Like everyone else I know who uses a stick, my doctor played no part in its acquisition, except to nod in approval when he first saw it:  I walked into one of those weird stores that seem to mainly do crockery but with a big sideline in light bulbs and fabrics and walking sticks, and I bought one for £17.99, a price which hurt my disabled-student heart.  The things which qualified it in my eyes were its smooth handle, its appropriate height and its dour blackness – the sticks on display were mostly colourful and patterned.  Something about that made me sad.  Perhaps it was that the patterns were mostly suited to people 50 years older than me, and it drove home the loneliness of being a style-conscious young woman who needed a walking stick.  Perhaps it was the subtle admission that these things had to be fun, because, hey, we’re going to be looking at them every day for the rest of our lives, right?  I had no idea how long I would need it for and thus whether its presence in my life was going to be that of a plain, grey surgical crutch to be grudgingly borne until I could cast it away, or more like a pair of glasses that would become so much a part of my attire that I ought to get something “me”.  But I got the black one, and gritted my teeth through all the new sensations it brought – the awkwardness it instils in strangers on the bus who sometimes do and sometimes don’t stand up for me; the sudden camaraderie that makes other people with sticks start conversations with me in the street; the squirming curiosity of some friends and bewildered laughter of others.  No, it’s not because I fell over drunk, I have an illness that gives me tremendous pain all the time, thanks for asking.  The little black stick was as discrete as a walking stick can possibly be, and that’s why I liked it.

The first time he saw it, my Dad sighed and said “I don’t know why you didn’t get a snazzy wooden one”.  It stung.  Apart from the fact that a wooden cane would only be “snazzy” if I were a man in 1910, it stung because even my disability could be incorporated into the way that a woman’s physical appearance and fashion choices are always up for debate and nearly always found wanting – just like the time my Dad stopped me going out in three-quarter-length leggings by body-shaming me, he now got to ruin my walking stick as well.

The thing that really gets me about this is that to most people, my walking stick is my disability.  They don’t know or can’t remember that I have it unless I’m leaning on a little hollow metal pole.  I don’t like that.  I don’t want my walking aid to be a sad thing, any more than a person’s glasses are a sad thing, a bleating little reminder that they can’t see properly.  And that’s why I’ve been loathe to get one that looks like it wants to be noticed.  My friends all got ones made of coloured perspex, to blend in to outfits or assert their personality, and while I liked them, the whole concept of drawing attention to my own stick filled me with shame.  It wasn’t that I was ashamed that I sometimes need a bit of help walking, it was some kind of weird meta-fear that I couldn’t bear other people to think that I was self-conscious about it.  Surely a plain-black stick said “Oh what, that?  Yeah’s just a long-term crutch dude, ignore it.”

The first thing that really happened was that I saw a hotel room going for £18 in London and thought “Huh, I can afford to go to London.”  Slight problem in that on my last visit to London I completely lost the use of my legs on the second day and got stranded in a Starbucks for 4 hours unable to get up.  Usually I don’t need the stick all day, every day, but then I’m not usually in London.  My friend suggested a collapsible walking stick and recommended a company.  All their sticks had patterns.  I hmmed and hrrred my way through their website, then decided just to return to that store where I bought my first stick, two years ago.  I think I reached up to my new cane on the rack firstly because it was collapsible, then considered the pattern.  In a sort of a way, I hated it, but in that very special way that you hate your favourite tune when you first hear it.  I balked at it being £23.99, but then, this isn’t like the decision to buy a nice shirt, if you don’t buy it, you’re going to be not walking until you do.

So now I have a red and green paisley collapsible stick.  My usual shoes are red brogues, so I thought it would be a good choice.  It will probably clash with a load of my outfits, but then I still have old blackie for those.  I wonder if one day I’ll have a collection, like some girls have loads of purses.

To go with my it, I also bought a retro 80s graffiti type back-pack.  I bought it from Accessorize, which is usually a little mainstream for my tastes (most of my recent purchases are from Etsy) but I’d been trundling through the city in a fibro-fog looking for a back-pack for two days when I found it, and bought the first one that wasn’t explicitly offensive to my taste.  To be frank, I haven’t worn a back-pack since I was 11, and I really didn’t want this one, but I have reached the end of my tether with handbags, which slap on the side of my stick all the time, and weigh on my already very painful fibro-ey shoulders.  It’s big enough to accommodate my collapsed stick and my notebook – and what else would I need?

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Ten Things to Expect in Theatre

1.  Professional snogging.  Theatre is the only profession I know of in which you can expect a full on mouth-to-mouth kiss from each of your colleagues after a hard day’s work.  I’m not talking casting couch flattery, or those tantalising doomed romances held during rehearsal cigarette breaks (although expect them too, obviously).  I mean that gender, availability, whether or not you can stand each other aside, after a performance, you will laugh like a maniac and kiss all your colleagues on the actual mouth.  It is always unnerving, but don’t worry about what it means: it is not sincere, it is merely the thespians’ handshake, because our emotions are running high and that’s the way we like it daahhhhling.

2.  Your wages will be given to you in an envelope, possibly under the table at a wine bar.  It’s not illicit, but for some reason, theatre companies like to behave as if they are.  I have known a thesp to keep his £800 of earnings in a paper bag in his bedroom and use it to pay for everything in cash.  That my dears, is proper hand-to-mouth living, and you can expect that until you have a six-month run at The Globe.

3.  Poverty.  Theatres are presently on a plethora of money woes that began with the invention of the motion picture – some are closing down, few are profiting, and all are propped up by some degree of donation.  No matter how beautiful the façade of a theatre, no matter how ornate the stone masques on the front of the building or how thick the gold leaf, the backstage area will be crumbling.  I have never worked in a theatre that had enough money to be properly carpeted all the way through, or indeed fully painted.  In most, the carpet and paint will run out just beyond the greenroom, which will itself resemble a Thatcher-era classroom.  And did you want the radiator on?  Just kidding, there’s no radiator.  Like everything in the business, façade first, content later.  And I’ll be jiggered if ‘later’ ever comes.

4.  Flash friendshipping.  Imagine the set-up: when you begin rehearsing a play, you meet several strangers.  They are all people with whom you have at least one massive thing in common, and by and large, thesps are slightly more emotional, insecure and vain than the general populace.  From being total strangers, you are suddenly thrust together several times a week for several hours.  Conversations evolve to this model by being based on what happened since you last saw each other, and generally become deep and involved very quickly.  I have directed 12 plays and in not one of them have I not both given out and received love life advice.  Your life will very quickly become intertwined with theirs and the world often shrinks to the size of the rehearsing room, where you blurt out your secrets, fears, frustrations and crushes.  It is a struggle to stop every rehearsal becoming a heart-to-heart.  Then! the play happens and you never see each other again.  What?  Those friendships you made were so deep and beautiful that they’ll last forever?  Nope.   Soon you will pass each other in the street and think “Huh, I wonder if she figured out her sexuality or not.”  And that’s if you’re lucky.  I have been involved in plays that ended up in love triangles (and twice a love square), obsessive friendships and even genuine friendships that completely exploded in the faces of those involved when the real world intruded.  That’s not to say you can’t make real friends and at least amicable acquaintances, but tread very carefully when feeling intense attachment to your acting colleagues.  It is much more likely to be the intense atmosphere than it is to be true love.  And while it’s easy to say, try to be careful what you tell others – with or without malice, theatre is a gossipy business where your reputation is everything.

5.  Strangers will be bafflingly impressed, whilst also having no idea what you do.  I once met a guy at a party.  Not a uni guy, a full-on Non-Student Guy.  He asked me what I do, and rather than say I was a literature student and allow him to patronise me about the usefulness of being well-versed in Icelandic poetry, I said I was a writer.  “Wow,” he said, “that’s amazing!”  Is it?  I grant that being a good writer is something our society values a lot, but from what I’d said all he could accurately deduce was that I sit on my arse in front of a computer a lot of the time.  He asked what I wrote, and I said I had written and staged around ten plays.  He lowered his voice.  “Without blowing your cover, would I ever have heard of you?”  No, good sir, you would not.  But this reaction to writers is surprisingly common.  Disdain is not uncommon either, of the yeah-good-luck-with-that-I-have-a-real-job variety, but next to that is perplexing ill-informed enthusiasm.  The best theory I have been able to manage is that most available jobs are very far from creative.  Most jobs exist within a structure of necessity, and are delegations from the delegates of the delegates of the people who make the necessary things.  That means that most people have absolutely no idea about creative industries, how saturated they are, and how talent and productivity ≠ fame.  A good comeback to the suggestion that you ought to be famous because you do something creative is “Well, who have you heard of?”  Because let’s be honest, the average person has only heard of five playwrights, and most of them are dead guys. 

6.  Bullshit.  I recently left a company because the man who ran it was always giving me bullshit.  “We have £10,000 to make this film!  We are borrowing £10,000.  We can raise £10,000.  You can raise £10,000.  We have no money.”  I was then picked up by his ex-business partner (guess why that guy left him), and told in no uncertain terms that we could do this project so long as I signed away financial control to him.  He was insistent that he got to produce and to bear the financial costs and rewards.  Then he got a full time job and left theatre.  The first guy at this point tells me he knows people at Dr Who who will do us some special effects!  And he’s been hired by the tourist board – well he’s going to be – probably.  This happens all over the industry, especially in small businesses.  Frankly, I don’t believe that these people are deliberately lying – they’re just fanciful.  That’s not a requirement for someone to work in a business that revolves around creating illusion, it is in face a handicap, but it’s a very common one.  Never.  And.  I.  Mean.  Never.  Put all your eggs in one basket, or give anyone any money without garnering lots of impartial advice.  Projects fall through all the time, and half the time in theatre, all people are looking for is someone else’s money to cushion them when they do. 

7.  Big coats.  I don’t know whether it’s the romantic image of it flapping in the wind as you walk down the empty streets at midnight, or the pockets for holding all your little theatrical nik-naks (lighters and sewing kits a speciality), or whether deep down we do still all want to be Lord Byron in his cloak.  But I do know that any thespian worth their salt has a massive down-to-the-ankles-wraps-round-you-twice coat.  Mine is cavalry twill with brass buttons.  Buy one.  It will be good for your career.

8.  Dude, it’s so white.  It really is.  I’ve seen an all-white production of Rent, a play all about disadvantaged minorities, pass without comment, unlike The RSC’s casting of a black actor as King Lear http://news.bbc.co.uk/1/hi/uk/931905.stm.  Not to mention that even at university level, I have heard mixed-race actors saying that they know they won’t be cast – in fact, the only black actor I have seen in my university theatre was playing the slave in The Crucible.  Like most cultural pursuits, theatre is subtly reserved for white people, through the general willingness to perpetuate plays by dead white guys instead of new work, to use the oldy-worldyness of these plays to argue that non-white actors would be out of place, and because economically theatre is exclusive, which often keeps it in the hands of Middle England.  Sadly I have no advice to offer about how to stop an entire institution being racist, all I can say is that we must encourage debate, because the more informed people are, the less they will be able to defend positions like “Black people can only act black parts, which means only white people can ever be in the entirety of Oscar Wilde and most of Shakespeare.  No, white people playing all those Latin people in Romeo and Juliet is a completely different thing.”

9.  Fearlessness.  Yours, that is.  Things I have asked actors to do: kiss people of the opposite and same gender, simulate sex, simulate vomiting, simulate injecting heroin, simulate a seizure, smoke, be referred to as ugly, appear in underwear, play with a knife, scream, cry, simulate self-harm, cross-dress.  I am not a particularly cruel director, and this is run of the mill stuff.  Do not ever agree to something in the audition that you won’t actually be comfortable doing in front of a hundred people.  I had an actor drop out of a play because he didn’t want to wear make-up, despite having agreed to it in the audition – apparently it “filled him with dread”.  It put the play two weeks behind while we replaced him, and was completely immature and unprofessional.  Last time I saw him he was playing a comedy policeman.  Similarly I’ve directed a play where two boys were playing a couple.  One actor was gay and the other was straight.  After having rehearsed their kiss a few times, the straight actor told me he couldn’t do it because he was sick at the idea.  Naturally I felt unable to tell him to do something that made him feel sick, but it threw off the play and had I been able, I would have re-cast.  It was left to me to tell the other actor, who was understandably upset and felt that the other man had made presumptions about his sexuality equating to comfort kissing a man, whereas he found it awkward too.  Acting: it’s doing stuff you wouldn’t normally do.

10.  Critics.  Have you ever seen an unabashedly good review?  Journalism is based on the idea of the superiority and integrity of the journalist – they must feel that they are able to comment on everything, and that they are never out of their depth.  So it was that I once staged a tongue-in-cheek coming of age story set in a public school and was ripped apart by one critic for my “OTT” depiction of the upper-classes.  Jokes from this play include a marriage that can’t happen because the aristocrats involved aren’t related, and the public school’s end of term bear-bating.  She just didn’t get that it was a parody of the way upper-class children are usually troped onstage.  It was a form of comedy that went way over her head, whereas the audience gave it a standing ovation and many of them said it was the best under-25s play they’d ever seen.  But it was her who got in the paper.  This will happen to everyone at some point in their theatre career.  Don’t worry.  Plays are for the audience, who will feel whatever they feel, not for the critic, who has to criticise.

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Observations on Being Young With a Walking Stick

1) No matter how debilitating and terrible your pain, people will not feel like standing up to allow you a seat.
I don’t know why this is. Once when all the disabled seats were taken up on the bus (by non-disabled people) and I was left clinging onto a handrail for dear life and biting back tears, my dad told me no-one would offer a stick to a person with a walking stick who “Looks too young and healthy”, aside from my complete inability to stand up on a moving bus. There are two standards of bus etiquette, one of which is standing up for the disabled, and the other of which is standing up for the elderly, and as a young disabled person, you are likely to come off worse than an old healthy person, since we live in a society that respects the elderly and vilifies the disabled.
Predictably/unfortunately, I have no idea what we can say to society about this. If you find yourself desperate for a seat on a bus when all are gone, you are well within your rights to ask people to move.

2) People will always ask you what your stick is for.
This is more or less born out of genuine concern, but it is also an example of how young people are encouraged by society to be accountable to everyone else, always being prodded to overshare and explain themselves to others. When I first had to get a walking stick, my friends asked me about it with a perplexed grin as if they were expecting to hear that I’d got really drunk and fallen down the stairs at a club. Nope, increasing pain and immobility due to malformed feet. Hilarious. Yesterday I was at a party in a bar, and a man I have never met before asked me in a rather commanding tone whether I had hurt my leg. “Nope.” I felt rude, and also embarrassed, but I had to remind myself that it was him who started it. It is unacceptable to put someone in a position where they have to disclose their medical conditions to you. Of course you can tell people if you want, but mostly the reasons behind pain are multiple and complex.
Try “Hitting nosy bastards.”

3) People will always assume it is going to get better. Recently when I have been describing my plans for the future, the adults (by which I mean the adults more than ten years older than me) around me have asked whether I think I will be better able to walk by the time I am in work/going on holiday/living alone and expecting me to have an answer. This, while coming from a generally caring place, stirs anxiety in me because it belies an idea that you can get better by planning ahead.
This is probably thought to be particularly true of young people, who are always being told that we can achieve anything so long as we aim high enough and don’t let little things like physical boundaries get in our way.
To most people with health problems, the future is by no means certain, and lately I have been thinking that it is probably more helpful to learn how to live with the walking stick – moving house, getting a job, travelling – rather than putting everything on hold until a wishy-washy dream of painlessness comes true, or bullying myself about being ill. People do not question that a middle-aged or older person may need a walking stick their entire life, but they cannot seem to stop waiting for a young person to return to a status quo that may never exist again: Maybe it won’t get better. Chasing a false normality has ceased to seem like the answer to me. While I won’t stop looking for treatment and or cures, this idea that “It will all get better soon” is indicative of a general societal tendency not to take the health problems of young people seriously, as well as to assume that when you have difficulty walking you just need to try harder.

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