Today was a good day

So. Today was a good day. And I wanted to tell you about it. But then I thought, what if they think you’re fine and don’t need any help? What if they think you’re just moaning about stuff? What if they think you’re making it up about all the bad stuff? What if someone from the Department of Work and Pensions sees this and decides you don’t deserve/need to be on benefits? What if when you mention you’re on benefits someone/everyone thinks you’re scum/useless/a drain on society/having a laugh/a faker?

And you may think this is ridiculous and the ramblings of a crazy person, but it is really common for people with invisible, chronic illnesses to feel like this. I feel guilty and judged pretty much all the time. I refrain from posting a lot on social media because the anxiety that comes from feeling judged, or from people thinking that a picture of you outside and smiling means that you are fine and well and this is normal for you (without knowing what it took for you to even get outside or the fact that you haven’t been out the house in weeks), is huge. And because there are very real consequences of people thinking that.

I am unable to get out a lot of the time, to participate in activities, to travel etc. I rely on a lot of help (finanical and otherwise) and understanding – and without that I’d be literally helpless. And homeless. And friendless.

So I want to tell you about my very good day and explain the difficulties I met and how I navigated around them*.

Firstly, the fact that I managed to do anything today, was what made it so ‘good’. Because I have barely left my flat in 12 days, with the exception of two, brief attempts at a walk outside in which I managed to get less than 50 yards away (with my walking stick), before giving up and going back home as I was too weak to mamage more. Each round trip took me about twenty minutes and is quite scary when you are on your own and feel like you are about to collapse. Even in my own home I’ve had trouble walking, needing to hold on to furniture and walls far more than usual. Essential tasks like washing up, cooking, and washing have been beyond me for most of these days and I have relied on help from visitors or just left things to fester. I bathed every other day to save energy and spent most of my time lying down.

So this morning I was fucking desperate to do something and go somewhere and just get outside! And reader, I did! 🙂

Even before I went out (which I always think of as an ‘attempt’, because I never know how I will end up), I managed to do one load of washing! And a bit of washng up! And I had a bath! Glorious! Of course the bath was needed after the washing up, because at that point I was knackered and desperately needed to lie down and rest.

I headed out to the nearest bus stop – which in the past would take me about 60 seconds to walk to, but which now takes nearly ten minutes – and a woman passing asked if I was okay. Yep, I said, not able to engage as I was concentrating on getting to the damn bus stop. It was a four minute wait, which was difficult as there was no seat, but there was a wall I could lean on. At this point I always have to ask myself if it’s sensible to actually get on the bus and go anywhwere. Because if I’m already feeling weak and tired, then it’s only going to get worse as every action will deplete me further. I have to think carefully about where I go – how soon will I be able to sit down? How will I get back again? What if I need the loo** – how far will I need to walk to get to it? How noisy/busy will it be***?

I decide on the Dulwich Picture Gallery because it’s on my bus route, not too far away and the bus stops right outside the entrance. It has lovely tranquil grounds at the front and I can sit in the sunshine or the shade.

When I arrive, I decide to treat myself to a cup of coffee. I don’t have enough energy to walk into the cafe and order and then go find a table, so I head straight for a table in the shade and figure I can order from there instead. There are no free tables close enough (those that are will be too far for me to walk to), so I ask a lone man at the table if I can share with him. It is awkward at first, but soon, using the ever reliable British opening gambit of the weather, we strike up a conversation about art, and cities and finally France and Spain and our respective travels there. He leaves to go to an exhibition and I discover when I ask for my bill that he has paid for my coffee. I am having the loveliest day!

I want to go into the gallery and look at some paintings. Talking about art exhibitions with the man has made me realise how much I miss it. I get up and test how sturdy I am in the moment – the gallery entrance is the same distance from here to the main entrance (about 10 yards). Even if I can’t walk to see any art, I decide to risk it anyway and make my very slow way to the entrance. Because I am on benefits I can see the permanent exhibition for free, which is good as I can’t afford it otherwise. They have wheelchairs in there. I have been using a wheelchair when I have someone to push me, for a little while now (and always in hospitals – those long corridors are way too much for me, even on a good day) but I’ve never wheeled myself in one. Because of the fatigue, having to wheel myself seems counter-productive, but I decide to have a go as it’s such a small gallery and at least I can sit down. The staff here are really helpful and friendly. They put my walking stick behind their desk for me (there’s nowhere to store it on the chair) and off I go. I find I am instantly in people’s way and they in mine. It would be useful to have an old-fashioned bicycle bell to let people know I’m there, as they don’t seem to notice when I can’t get through, but I’m guessing that’s not terribly appropriate here.

I soon get used to steering and turning and go look at the beguiling Girl at a Window by Rembrandt and some exquisite flower paintings by Jan Van Huysum. It is strange, looking up at the paintings from this height, maneuvering around so I can see them without the light obscuring the details, trying not to bump into the furniture (or people). I feel a little proud of myself for being able to steer the chair around so quickly. There is no way I would have been able to walk around this relatively small gallery. Even though I am having to use my arms, just being able to sit and not spend energy on standing and walking is a huge relief.

Nevertheless, I am starting to flag. I make a quick trip to the gift shop, because I am slightly obsessed with museum gift shops. I bump into an old aquaintance who I haven’t seen since before I got sick. I make the usual explanations and she is very sympathetic, but this bit of conversation is wearing me out now and I suddenly can’t stop yawning. Negotiating the tight corners of the small crowded shop is difficult, especially as there is another wheelchair bound person there and we are trying not to engage in a game of dodgems. I keep saying sorry. Everyone keeps saying sorry. I make it out alive. No toes are harmed in the process.

At the gallery entrance, I retrieve my stick and a staff member helps with the wheelchair. My body can barely hold me up anymore. I need the loo, but it is too far to walk and I reckon I will be able to hold it until I get home. The bus stop on the other side is further away for the journey back. I know I’m not going to make it. I’ve learned the hard way that sometimes you just have take a taxi or risk a certain crash.

For all that I find Uber’s business model ethically problematic, their app has been an absolute godsend for me. There are times when I get stuck – I simply cannot walk anymore, however near that bus stop seems. Even if I can make it onto the bus, I’ve got to walk those 50 yards at the other end and that can be almost impossible. So cabs for short distances, even though it’s extra expense, have become essential (how else would I get to and from the doctor just down the road?). But with regular minicabs, there are problems: if I am so fatigued that I can’t speak (this happens often) it is very difficult to call and book them; I might not have any cash on me and how am I going to get to a cashpoint (which might be even further away than the very short journey I need to take)?; they can take forever to arrive and I might not have anywhere to sit and wait. Even when they say they will be ten minutes, you never really know how long it’s going to take and if I am on the pint of collapse, those minutes count. But with Uber, I don’t have to deal with any of that, so that’s who I turn to to get home today. If I hadn’t, I would have crashed badly and not been able to eat when I got home.

Which is what I did. Hungry and knowing I would collapse if I didn’t get something in me fast, I spread some peanut butter on a slice of bread and ate it quickly. Then I lay on the sofa to recover. After a while, I felt a bit of energy come back, which was a nice surprise. So I got myself a bit more food, then lay down again, spent. I haven’t moved since. That’s it for me today.

I have had a DAY OUT. Well, a couple of hours. But this is so, so wonderful. I did try to write earlier in the week, but until now my brain just wouldn’t work. This is really common too and I’ll write about the joy that is brain fog another time. To be able to do a couple of household chores, walk to a bus stop and actually go somewhere, talk to a few strangers and look at some art and write about it when I got home – this is a bloody good day and I am so happy. I don’t know when I’ll have another one, so I’m savouring every moment for the time being.

Thank you for reading.

Take care,

Stephanie xxx

*Symptoms and experiences of CFS/ME differ from person to person. I can only tell you how I experience it.

**Needing to go to the toilet can make me far more tired and weak as ‘holding it in’ requires energy and so it is important I go as quickly as possible as I don’t have that energy to spare.

***Noise and busyness depletes my energy, so if I’m already feeling very tired, too much will make me crash.

IMPORTANT NOTICE: Unless you have experience of CFS/ME yourself, please don’t comment about things you think/have heard/your Aunty Doris said will help. I know it comes from a place of kindness, but if there’s one thing I’ve learned over the last year, it’s that unless you have experienced this yourself, your opinion isn’t helpful. If this sounds harsh, then please note that it’s been learned the hard way – everyone seems to have an opinion regardless of whether they actually know what it’s like and I just don’t have the energy to deal with or read them all. Thank you for understanding.

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In which I disappeared for a year…

So. You haven’t heard from me for a while. There is a reason for that. My life, and I, have been changed irrevocably these last 12 months. One year and one week ago, I came down with a terrible ‘flu. This turned into pneumonia. Bedridden, my parents took me in and took care of me and the doctor demanded to see me twice a week until I recovered. Only I didn’t recover. Not quite.

My lungs, after a couple of months, finally healed, and yet I never got ‘fit’ again. I have finally, after quite a horrific journey, been formally diagnosed with Chronic Fatigue Syndrome (CFS).

Did I say ‘changed irrevocably’? It feels more like having my life ripped from me. The pictures you see on this site of a young fiesty woman gallivanting about in sequins and shorts, offering writing tips and workshops, joking about office politics, taking part in film festivals, winning awards (well, award singular 🙂 ) and generally living life with gusto has gone and I’m still grieving, so forgive me if I don’t write about it in full just yet. Just getting these words down now is making me cry and if I take the lid off this can of worms, I’m not sure I can cope with the rest of the day and coping is what I do, every day.

Oh there are good days, of course. I can find joy in the simplest of things, even more so now. When getting outside, reading, writing, doing anything becomes a luxury, then believe me, you enjoy the small things as the beautiful gifts that they are.

That’s all for today. I didn’t know where to start with all that’s happened, but I needed to get this down and writing is my way of making sense of things. I hope it helps you too, in some way.

I know that I haven’t explained yet what CFS (also known as M.E.) actually is – I haven’t got the energy to right now – but this is a good place to start if you’d like to find out.

Take good care of yourself,

Stephanie xxx

IMPORTANT NOTICE: Unless you have experience of CFS/ME yourself, please don’t comment about things you think/have heard/your Aunty Doris said will help. I know it comes from a place of kindness, but if there’s one thing I’ve learned over the last year, it’s that unless you have experienced this yourself, your opinion isn’t helpful. If this sounds harsh, then please note that it’s been learned the hard way – everyone seems to have an opinion regardless of whether they actually know what it’s like and I just don’t have the energy to deal with or read them all. Thank you for understanding.

 

Giant slides and zombie robots – another day in London

“I’m near a giant pile of wool. Near the singing lift.” I’m meeting someone in the Royal Festival Hall, trying to explain, on the ‘phone, where I am.

“Are you near the weird people?”

I look around. “Um…”

“Those weird wooden figures?”

“No”, I say. “I didn’t see any wooden people. I’m by the windows.”

Eventually, she finds the singing lift and the giant pile of wool and joins me.

Later, we notice a crowd start to form outside the building opposite. They are queuing for the two enormous helter-skelter-y slides that have appeared outside the Hayward Gallery. I nip off to the loo and am informed of the news on my return: the slides are not working; people are getting stuck. We are mesmerised by the sight of the staff trying out the slides. Each is instructed at the top by a woman with a severe bun atop her head and a walkie-talkie in her hand. Each starts well enough, but slows down at the third curve and after slowly inching down to the bottom, is forced to shuffle their way out on their bum. We watch the repeated indignities, silently hoping someone gets stuck, just to see what would happen. Our attention is drawn to the right of the slides, on another of the Southbank Centre’s myriad levels, where a group of people wander aimlessly with arms out, perilously close to the edge. They are wearing what appears to be virtual reality masks. They mill around like zombie robots.

We try to work, but it is difficult with giant slides and zombie robots to distract us. But we manage, because this is London.

The people continue to fall slowly down the slide and, at the time of writing, no zombie robots have fallen off the edge.

Problematic area clearly marked

Drawing by Amy Pennington highlighting the ‘problematic area’

Drawing by Amy Pennington

One night in Arcos: And the beat goes on (a flamenco experience)

It is one of those nights that begins like all the best adventures – in a car, believing you might die. You don’t speak their language and they don’t speak yours, but somehow you have agreed to something – you don’t know what, yet – and now you are in a car squeezed between two people in the back seat, being sped around the narrow, steep and curvaceous cobblestone streets particular to this Puebla Blanca (White Town), built hundreds of years ago on the edge of a cliff. As the driver accelerates around absurd corners, you wonder how long it will take for the news of your tragic death to reach your family. Everyone in the car is laughing. Apparently this is hilarious.

You don’t die. Instead you are transported a short way out of town to a large unassuming room, with mismatched furniture and brown paper tablecloths and the rich salty smell of Andalusian food.  There are families of all ages occupying the tables that are full of glasses of beer and wine and plates of tapas. Framed pictures of flamenco artists are crammed onto each wall at slightly crooked angles.  There is a small black stage in the corner with chairs set against the walls and a microphone on a stand points to the centre seat.

One of your party brings you a glass of pale gold manzanilla and grabs some spare plastic chairs that were stacked in another corner, so you can all squeeze yourself in. A basket of bread and regaas and a plate of fried seafood is placed on the table.

The show begins. The cantor (singer), bailaores (dancers), tocaor (guitarist) and cajón (percussion box) player take their seats on the stage. The cantor, a huge beast of a man with a voice to match and diamond studs in his ears, sings with a deep sonorous and powerful melancholy, full of raw despair from his guts. The first bailaora is magnificent – her hands, hips and dress magicking up commanding tableaux – taut and strong and beautiful.

The next dancer though, has you completely enthralled. He dances with wit and a divine intensity, his body alternately becoming fluid, then hard, heels stamping out an impossibly fast rhythm. At one point you realise you have forgotten to breathe, that you are suspended in time. You join in the huge “Ole!” and standing ovation.

Others in the room are invited on stage to dance in turn. Women from the audience transcend their ordinary clothes once they begin dancing. A girl in a Nike t-shirt and sweatpants jumps on stage and commands it completely, pulling at her t-shirt as if it were the fringes of a dress,  passion fizzing from her arms, her hips, her face.

After the show you go to the bar to order drink and food and are confused to find the dancers and one of the musicians serving behind the bar, still in costume. The girl in the Nike tracksuit is totting up a bill and the male dancer who took your breath away is asking what you want to order.  This is the Family Flores – this bar, these dancers, the proprietors. They are flamenco and flamenco is their life.

Most of the customers leave, but not the party you came with. These are their friends and now that the place is closed, a new show, the real one, begins in the bar.

One of your party, Juan Diego, is a flamenco guitarist and, it turns out, the nephew of the proprietor – the man behind the bar with the hat and white hair pulled into a ponytail. You guess correctly that this was Juan Diego’s teacher. Someone brings Juan Diego a guitar and a chair and it begins. Juan Diego sweats as he makes the guitar sing and the small assortment of people join in with palmas (flamenco hand-clapping) – each adding their own, complementary beat. Someone starts to sing and then the percussionist grabs his cajón. For the next couple of hours, different men sing desperate songs of love and woe with Juan Diego. You find yourself clapping along. You don’t know if you’re doing it right but it doesn’t matter. At the end of one of the songs, someone points and laughs and does an impression of you at that moment – hands clasped in prayer, face full of wonder.

Amid the Ole!s and smiles and smoke, a small dog runs into the bar and sniffs everyone’s feet. The dancers leave and return in casual clothes and carry plates of steaming food from the kitchen to the main room. Eventually, at around 2:30am, the players stop playing, but the music keeps going inside you.

On the backseat of the car on the short journey back, someone rolls a joint and the driver does not crash. You arrive at your room tired but you cannot sleep, not yet. Not while this music plays on in your veins.

Titi Flores will be dancing with Flamenco Express in London between 23rd and 26th April. See http://www.flamencoexpress.co.uk/ for details.

Wotever DIY Film Festival 2015 – Submissions Now Open!

Are you, or would you like to be, a queer film-maker? Do you have a story to tell or know someone who does? Then read on…

We are thrilled to announce that we are now accepting submissions for the fifth Wotever DIY Film Festival 2015 . Our annual celebration of queer lo-fi filmmaking will once again feature films, discussions, workshops and more at the beautiful Cinema Museum in London.

Deadline for submissions: 31st May 2015

Festival dates: 21st – 23rd August 2015

Venue: The Cinema Museum, Kennington, London UK (fully wheelchair accessible)

Last year’s WDFF was a huge hit!

We are looking for short films of up to 30 minutes on a queer theme. However, we will prioritise films 15 minutes and under. Feature length films will be considered although please be aware we have very limited space for these. All films need to be DIY or independent films of any genre on a queer theme. We have a particular interest in films about queer people and queer culture reclaiming space. Other than that, our only criteria is that they must be in keeping with our Wotever ethos and as such we will not consider submissions that are racist, misogynist, transphobic, homophobic, ableist, sizeist, feature religious intolerance or are in any way prejudiced or exclusionary towards a particular group or identity. We are always trying to improve accessibility at Wotever DIY Film Festival and with that we assert that all filmmakers selected for the festival must work to commit to subtitling their films.

We welcome films that push the boundaries of queer thinking and ideology, are thought-provoking and progressive. Saying that, we also appreciate a nice queer-meets-queer love story, slap stick comedy or music video we can dance to.

This is a film festival by and for the queer community, and we would especially love to see submissions from people who may feel under-represented in the queer community, such as QTIPOC, trans and disabled groups as well as people with refugee status. With this in mind please share this with your friends, lovers and family and get the word out to as many corners of our wonderful queer community as possible.

DEADLINE FOR SUBMISSIONS: 31ST MAY 2015

For submission forms, questions, suggestions or queries contact Theresa and Tara at woteverfilm@gmail.com. Please do not send your film until you have received a submission form, and ensure you provide a download/streaming link to your film

www.woteverfilmfest.co.uk

http://woteverworld.com/

http://www.cinemamuseum.org.uk/

@WoteverFilmFest

https://facebook.com/WoteverFilmFestival

A brief compilation of phrases I utterly detest

Distressed = distressing

A perfectly good piece of furniture made to look shit.

These five phrases really piss me off:

1. Shabby chic
Ugh. Take a piece of furniture, make it look tatty. “Distress” it. Sell it as some sort of ‘lifestyle’ design to people who think it makes their home look cool in some vague bohemian way. A complete oxymoron.

2. Going forward
The most unnecessary and useless waste of words. Whenever you see these two words together, mentally remove them and read the sentence again. See? Makes no difference to the meaning (but vastly improves the sentence).

3. To be honest
Suggests the speaker hasn’t been until now.

4. Key Performance Indicator (KPI)
Corporate wank. No. Just no.

5. Lifestyle
What the fuck does this even mean? It is used to sell products, to demean people’s sexualities, to suggest that what you spend money on and how you look is your life (no doubt for some people that may sadly be true). It is a term one is supposed to buy into. Empty and meaningless.

Did I miss anything out? Share your hated phrases in the comments.

Happy New Year II: In which we say goodbye to January and start again

Dear January 2015,

I know it’s hard, being the first of the year. December is a difficult act to follow, what with all its froth and glitter and celebratory wantoness. Then you come along – turning up the morning after and picking your way across a dirty carpet covered in streamers and fag-ends. You are overwhelmed by expectation. People expect change goddammit, they want something new, something better and they expect you to deliver. So you reach into your pockets and pull out your offerings: cold air, short dark days, a broken boiler. You root around for more, desperate to find gold amongst the bits of fluff and loose change. But all you can find is illness, a flu virus here, something more serious there…Then you bring out the big guns. The media go mental. It’s not your fault, of course it’s not. It’s not as if these things don’t happen to the others.  It’s just that you’ve got this reputation and frankly the weather doesn’t help. You’ve done your part. You’ve ushered in the new year, you’ve given people the excuse they needed to hide under a duvet, to stay inside, to ingest something healthy. But now it’s time to move on.

So. Let’s start again. Happy New Year. And HELLO February (Oh for god’s sake put those chocolate hearts away, what are you, twelve?!).

Faith in LGBT

HM-2015-Front-Page-727x1024

I’m excited to be chairing ‘Faith in LGBT’ as part of LGBT History Month 2015 in Camden on 6th February.

“An evening of exploration of sexual orientation and gender identity contextualised within religion, faith and belief with short presentations and Q&A from Father Bernard Lynch, Rainbow Jews Project Manager Surat Knan, Kieran McCrystal from Soka Gakkai UK and Dr Rusi Jaspal from the De Montfort University.”

Free refreshments available on the night (soft drinks and wine). Tickets are FREE but you must register at: http://www.eventbrite.co.uk/e/faith-in-lgbt-tickets-15004989327

For more on the Camden & Islington LGBT History Month February 2015, download the programme here

Cabaret Artist of the Year!

Recently, I’ve been taking a hiatus from busy places both on and off-line.  I’ve been craving quiet and nature. In short, my current fantasy is to hide out in a log cabin in the wilderness, surrounded by trees. No social media, no traffic, no people. Just green and sky and pen and paper. Huge windows in a small room. A wood burner and a decent coffee pot. Time. The sound of the wind through branches. Just being and writing.

But yesterday I found myself all dressed up in a nice frock and heels, a gold evening bag frantically swinging from my shoulder, at 3 o’clock in the afternoon. I jumped in a cab for the last bit of the journey (because these kind of heels are for looking good in, not for rushing from tube stations in) and arrived at Sway Bar in Holborn to be greeted by Katie and Naomi from Planet London for the Ultimate Planet Community Awards 2014‬. I’d been nominated for Cabaret Artist of the Year – which I didn’t think I had a chance in hell of winning. But also, the club night I compere: Female Masculinity Appreciation Society (FMAS‬) was nominated for the Most Creative Club Night of the Year award, and the Wotever DIY Film Festival, which I was involved with and which is run by the wonderful Theresa Heath-Ellul and Tara Brown was nominated for Film Festival of the Year. In addition, friends and all-round brilliant Wotever World people Ingo Andersson, Positive Change and DJ Jo Gattenberg were also nominated for, respectively, Role Model; Volunteer of the Year; and DJ of the Year. I thought it would be nice to hang out with mates, gawp at hot women and maybe bag a free drink.

There was free drink*. It started at 3pm. And although it didn’t stay free for long, it did not stop flowing. I forgot about the log cabin and embraced the glamour. I met some amazing, inspiring people, including author Karen Campbell. We bonded over the completely cast-iron fact that neither of us could possibly win our respective categories (I think you know where this is going…). I met the inimitable Lady Phyll, who runs UK Black Pride. Not only was she hilarious when she presented some awards, she also let me have some of her wine after mine ‘disappeared’. I screamed and whooped when Kerry Positive Change, Jo Gattenberg, Ingo, FMAS and the Wotever DIY Film Fest all received Honourable Mentions. And then, I, er, won an award myself. It was very surreal, because I just didn’t think that could happen. And so I was quite drunk and hadn’t planned anything to say and just thought ‘What?? What the fucking what??’ and did some embarrassing gushing** and then had to have my photo taken against the ‘media wall’ by one very sexy photographer who said something that I misheard as “are you ready for your bikini shot?” (which was a little disconcerting, as I don’t even own a bikini). And then there was dancing …

Winner – Cabaret Artist of the Year 2014 (Photo by Emma Bailey)

You know when people say “I NEVER WIN ANYTHING!”? Well, *I* never win anything! Only now I have. And that’s rather nice.

So, thank you everyone who voted for me. It was unexpected and appreciated and meant more than I thought it would. Thank you Ingo, who’s given me lots of opportunities to prance around on stage talking stuff and nonsense. And thanks to Katie and Naomi at Planet London for making us visible, creating such a lovely event and bringing so many talented Lesbian, Bi and Queer women together.

Crawling home in the wee hours, then getting up again for work this morning with feeling in only some of my toes*** was a brutal bump back to earth. Am I still craving that log-cabin in the woods? Yep. Thing is, if you wear gold fishnets in a forest, do they make a sound?****

Wotever Family Outing

Wotever Family Outing (Photo by Emma Bailey)

You can read the full list of winners here and see more pics and video from the night here
*and hot women, obvs.
**not *that* kind, you perv.
***feeling in all ten toes has now returned, but it took a while.
****That doesn’t work, does it. I tried to be clever. It didn’t work. Deal with it. You get the gist.

Conversation with myself: I’m Writing

Sick and twisted

I’m writing a story.

~No, you’re updating your blog about writing a story. Not quite the same thing.

Yes, but it’s just so dark!

~Your blog?

No, the story.

~So?

I disturb myself sometimes.

~Good.

Good?

~It means you’re getting somewhere. You’ve hit a nerve.

:-/

~Look, the things you write about aren’t a literal representation of you. We all have darkness inside us. We all think horrible things. At least you’re not doing them.

True.

~Now, stop pissing about and get back to work.

Thank you.

~You’re very welcome.