Coming Up on Blogeration…

After weeks of feeling like total rubbish, wrestling with Bipolar, spending time in hospital and having unexpected procedures, my blog became somewhat neglected. Apart from a couple of rather whingey posts. I did intend to write a post about all that happened whilst I was in hospital, to update all of my lovely friends and Tweeters (many of whom have become good friends), but I decided we’d all had enough of my infirmary saga. If anyone wants an update, or to ask a question, please just say. Your support, friendship, love, laughter and visiting – Mrs Marsh, you star!) – made everything bearable.

Instead, I, and my opiate muddled brain, will attempt to write about the subjects that have been bugging my whilst I’ve been bug (of the infection kind, not of the many legged variety) and bed ridden.

They include:
The abortion bill debate
The treatment of and attitudes towards foreign workers
ATOS (inc. their sponsoring of the Paralympics)
The continuing disgusting treatment of the ill and disabled
Sexuality and censorship

How quickly these get written will remain to be seen! But work on the first will start as soon as this one is posted.

TTFN

Mel x

1 Comment

Filed under Catching up

(What’s the story?) Morning Gory

Last night I was in agony with my foot, to the extent that I genuinely didn’t know what to do with myself. It was happening within a depressive phase of my life with Bipolar, which made it all the worse. You can catch up with it by reading my last post.

Well, I took extra sleeping meds (within the dosage I’m allowed), to enable me to sleep through the pain. So tired I couldn’t sit up straight, me and the Black Dog curled up in bed, and fell in to the deepest sleep I’ve ever had.

I woke up this morning, hearing Bess (my darling little dog) having her fur cut. Honestly, you’d think a wolverine was being tortured, not a a little terrier having her tummy trimmed whilst being cuddled and kissed! I laid in bed, opiate lozenge in my mouth, and waited for Mum to come and help me up. I felt wide awake, and decided to sit on the landing floor to cuddle the now cashmere soft Bess.

All was fine – I was smooched on the nose, and I held her in my lap – then I tried to get up. Because I felt awake, I forgot that the sleeping meds (of which I’d had more than I usually do) are also muscle relaxants. I’d put my wobbling down to the state of my feet, but oh how wrong I was.

I turned to kneel and push myself up…one arm gave out from under me, I grabbed the chair in front of me – forgetting in my panic that it’s a swivel chair – it spun around, my legs collapsed, I unintentionally flipped over and ended up with my head hanging over the top stair.

Poor Mum was stricken. Luckily, as it was ending, Dad came back in from the shops and ran up to help. I sat up, knowing instantly that I’d badly hurt my left elbow, which is already constantly painful, and my left knee, which is my best behaved one.

I was quick to reassure Mum that I was fine – explaining what had happened with the bloody chair and my rubber limbs! There were a few tears as the shock hit me, but then Bess appeared.

She has no understanding of EB. To her, I’m just one of the pack; I give her treats, I play with her when I can, and I give extraordinarily good tummy tickles. She knows when I’m sad, and she’ll stand on my lap, with her paws around my shoulders to cuddle me. Her big liquorice nose snuffling in my ear, her soft whiskers on my cheek.

But as I sat, booing on the floor, she rolled her most treasured possession under my leg…a soggy, grubby, chewed up tennis ball. She wanted me, or Mum, or Dad, to play. And that stopped the tears, because I had to laugh. In the midst of packing for hospital and panicking over what I’d just done, there was a little furry ray of sunshine at our feet. Bessie’s tennis ball is her ecstasy, and she wanted me to have it too.

She was jet black as a pup, but now her Yorkie daddy’s genes have come through, and she’s mostly silvery grey (with a ginger ‘tache!). My little, scruffy Grey Dog chased away the big Black Dog today. He’ll sneak back, but Bess will be there, shining with love and silliness, and she’ll see him off again.

Yesterday, I felt lucky, but I wanted to give my parents their freedom. Today I feel that, once again, something saved me. Something kept me here. Being agnostic, I won’t rule anything out. But I feel that if I keep being saved, there must be something I’m meant to do. I just need to find out what it is.

So until the Black Dog comes crawling back, I’ll have a good think about what I’m here for. Playing with Bess is definitely one of my purposes 🙂

M xxx

My Bessie Bear, chilling in my room, with the tennis ball!

20110816-145426.jpg

1 Comment

Filed under Disability

About last night…

In around thirteen hours, I’ll be heading off to hospital. It might be earlier, if things get worse, but I hope not.

Really, I should be in St Thomas’ A&E now, but there won’t a doctor there who will know what to do with me, and I really don’t want to spend another night in the Clinical Decisions unit. One night, three years ago, with an elderly man snoring louder than I thought was possible, and a heroin addict throwing tables around because he wanted Methadone, Dad awkwardly asleep in an upright chair, Mum curled up like a cat at the end of my trolley. No, not again.

So in about eight and a half hours, Mum will call the specialist nurse and tell her I need to be admitted. She will start the arduous task of securing a bed for me to collapse on to, and the Specialist Registrar of my Dermatologist will ask Microbiology which antibiotic needs to be pumped into my bloodstream, to force the infection out. I’ll be begging them for every pain killer I can have.

I feel like a failure. I’ve always had a sky high pain threshold, eschewing pain relief in favour of distracting myself. Music and a good book are my preferred methods. But I have never known pain like this, and even my strong opiate pain killers aren’t really helping. The fact that I’ve cried with the pain has been my parents’ indication of how much pain I’m in.

My right foot has myriad ulcerated wounds on it, and some are on areas that were already severely nerve-damaged. Imagine how an ulcer on your tongue feels… Now imagine that ulcer is four inches long… And it has siblings, all over you tongue, cheeks, roof of your mouth and gums… Now imagine someone is pouring vinegar over them, and they are so deep you can sink your teeth right into them. You’re getting close to how this foot feels.

On top of that, my Bipolar Disorder has reared it’s head. It didn’t occur to me last week, when I was a cheery and getting lots and lots done, that I was in a manic phase. I just wanted to think I was happy. Well, I obviously wasn’t, because the Black Dog has its paws wrapped around me in a vice like grip. I was managing to tell it to shush and be a good doggy when I was with people, or chatting on line, but tonight it broke free.

To be clear, I don’t think I’m unlucky, or that I have an awful life. I am so grateful for everyone I have who, for whatever reason, love or like me. I have a home, food, clothes, luxuries like the Internet and my iPad. I have healthcare, and some health. I could have a far worse disability or illness. I do thank my lucky stars, for all the good things I have, and all the bad things I don’t. So what I said wasn’t for my benefit…

I sent a tweet in which I said I thought I should let the infection take over, finish me off, and then my lovely, wonderful parents could have their freedom. And I meant it. It wasn’t a cry for attention or help, it wasn’t that I wanted my ego massaged and to be told how great I am, it was, is, what I felt/feel is best. My mum was sat in front of me, still wading through my dressing change, and I wanted better for her. I wanted her not to have to worry, not to sleep on mattresses by my hospital bed. I wanted she and my dad to go to bed at the same time, to travel and have fun together. Without a bandaged burden to consider.

But, for some reason, they won’t let me go. And I can’t go without their help.

So you’re all stuck with me for now.

I wanted to say a huge thank you to everyone who sent kind and concerned tweets, who offered support and prayers (I might be a non-believer, but I do appreciate people taking the time and having hearts open enough to pray for me. I’m sending love and good wishes back to you). And though I don’t believe any of the nice things you said, and probably never will all the time I’m a Bipolar Bear, I feel incredibly lucky to have made such fabulous friends via Twitter.

I hope you all know how lovely your hearts and souls are.

With love and thanks
M xxxx

3 Comments

Filed under Disability

The Curse of Lottery Winners

Today, the winners of the huge £161 million Euromillions lottery win made themselves known.

Like most people, if I had won, I wouldn’t have breathed a word to anyone but my nearest and dearest, but there have been comments that the couple were pressured into making their announcement. Some said they were told it would be “safer”, but I have no good sources to back that up. Personally, I can imagine they were pressured, but mainly because it benefits the consortium to show the public that “rags to riches” stories do actually happen. Then more people go to buy tickets, and the owners cash in even more.

(I do indulge in a Euromillions ticket now and then, so I’m not condemning buying them. Just the profiteers pressuring winners to make such a potentially unwise decision.)

I can’t say I’m not a bit envious. I can’t imagine ever spending that much money, but I can imagine helping all of my family and friends, my favourite charities…the list goes on. And, not so philanthropically, buying a house with a library, and having a walk-in wardrobe filled with Vivienne Westwood and original 1920s dresses…and a holiday apartment in Paris *sigh*. When it was announced that there was only one winner, and I knew it wasn’t me, I thought “lucky bugger!”, and hoped it would be someone nice. Not another cocaine snorting, obnoxious oaf, dripping in gold chains.

I was amazed by what people on Twitter were saying about the couple. It’s human nature to be envious (personally, I don’t think it’s a sin), and people will always make snarky comments. I’m hardly Snow White in those stakes! But I think there’s a line between being a bit bitchy, and being outright cruel. The winning couple are both big, overweight, whatever you want to say, and the husband obviously has mobility problems as he uses a walking stick. They said that they have both had serious health problems in past few years. It sounds about time that they had some luck!

There were a few minor bitchy comments. That isn’t what got my back up. There was some name calling, which I won’t repeat, but most was based around characters from Star Wars and Austin Powers. That started to rile me, but worse was to come. Tweets and Facebook statuses such as “f*cking fat f*cks. Kids are starving and they’ll spend millions on burgers”, “first thing they should do is get surgery so they don’t look so f*cking disgusting” and “if there [sic] to [sic] stupid not to eat so much, it’s a wonder they could fill out the ticket”, with retweets and ‘LOLZs’, really pissed me off.

I have recounted these tweets because people on my personal time seemed to think I was overreacting. Maybe I am, but I just cannot see how such comments are justifiable. Why does weight have to be such an issue? Not that they need a particular reason, but their severe ill health, and subsequent mobility problems might just have something to do with their size. You can’t very well exercise if you struggle to walk! Not all big people are so because they don’t stop eating! It wouldn’t be acceptable to bring race or religion in to it, and rightly so. And I do think, that given their health problems, there is a hint of disablism, conscious or not with some of the commenters.

All the couple have done is win a game of chance, which anyone could do. They’re not (as far as we know, at least) criminals, hate-mongers or anything unpleasant. Just two people who are happy to be able to help their family and friends, and being able to travel in a way that accommodates their health problems, having not been able to before.

Maybe it is just life, but I don’t see how body fascism is that far removed from racism and disablism. I would also say the same if the nastiness had been directed at people who were very thin. I’ve had family members suffer with anorexia, I’ve had family and friends abused for being “big”, and I’ve had friends abused for being thin (which apparently equals being vain, shallow, and whatever else!).

Maybe it has really riled me because I’ve been bullied because of jealousy. Not because I’m rich or beautiful (definitely neither of those!), but because I got “special treatment” i.e. being pushed in my wheelchair. I’ve also seen my loved ones to be attacked due to jealousy over their partners, their jobs, their clothes, even their fingernails! It hurt them, and I hated to see it.

Maybe, in fact probably, the couple don’t care what people say about them. I’m sure they are on Cloud 9 right now. But maybe it will hurt them; wealth doesn’t mean you suddenly stop feeling pain and humiliation. Look at these celebrities bleating to the media.

Earlier I said that we could say “that’s life” whenever someone is horrid. I didn’t mean that all horrible statements are equal in their offensiveness, as I’ve said above, but that we could dismiss all hatred, racism, sexism, homophobia and disablism as such. You get horrible people saying horrible things in life. It’s also life that people are living in poverty and dying of illness, but we rightly act against those things. Conservatism believes we are all inherently bad and need controlling. I believe the opposite, that we’re inherently good, even though we might naturally tend towards some negative traits like envy etc, most people do far more good than bad. I believe that only the goodness in people can spark change. I guess that’s why those tweets upset me so much.

I do not think that everyone in the world is a horrible sexist, racist, disablist, fascist person; I’ve been mean, and I’ve insulted people and bitched, when the recipient or target has done something wrong or hurt me or a loved one – not that I’m excusing it – but these people haven’t hurt anyone.

I’d love some of the ‘haters’ to say why they think they were so much more deserving. Maybe they’d like to say here….

3 Comments

Filed under Uncategorized

Work shy? Work deprived!

In a blog post I wrote last week, I suggested that the government give monetary incentives to businesses who enable disabled and/or ill people to work, whether by providing equipment for them to work from home, or by adapting their offices. A lot of companies in cities (at least I know this to be true in London) are required to ensure that any new buildings – of which there are many – must be accessible to the disabled. But those in old buildings, particularly small, local firms, might not have the means to fund adaptations. Necessary adaptions might not be viable in each building, of course, but this is hypothetical. Or what if the government provided grants or loans to people who could set up their own business and work from home? If a loan is given, it could be paid back over a fair period, with either base rate interest, or no interest at all. I’m sure that, within a year, the government would be recompensed by a decrease in claims for ESA, IB, IS, JSA etc.

Let me be clear, I do not think any disabled or ill person should be forced into work. I do think, however, that I have too many ill or disabled friends whose talents are going to waste. Some are great at PR, some would be fantastic researchers, others are writers, or techies, or bakers and artists. Their wealth of experience, and their want to make use of it are being left to rot just because their bodies or minds are keeping them out of the standard work place. It makes me angry to think that there are less skilled and less qualified able bodied people getting jobs above my disabled/ill friends, purely down to their lack of wheelchair, absence of surgical scars, or “clean” mental health record.

So, I would really be interested to hear what adaptations you would need to work in an office, or what kinds of equipment you would need to work at home (if, like me, your health/body/mind wouldn’t suit an office). For example, screen magnifying equipment, voice recognition software, aids to allow you to work comfortably from your bed, ramps or a wheelchair lift to access an office, a specialist pen that you can hold, or adapted kitchen appliances, a mobility scooter or powerchair. If you need a medical treatment, but are being denied it by your GP or consultant, that would be interesting, too. We all know about the “Postcode Lottery”.

Costs would be great, but not essential. I’ve never been able to go to work, but I know that so many of you have been pushed and forced out of your jobs, by your health and/or by ignorant bosses and co-workers. Equally, if you’ve never been able to work, but know what access adaptations or equipment you would need to go to work, do tell us.

Please do contribute your needs and/or experiences. The government might not want to listen to us, but we can make our voices heard. Even if you post anonymously, please do give us your story. Doubters and skeptics ask us what we would do instead of these cuts – well, let’s give them something to think about!

Mel x

Leave a comment

Filed under Disability, People Power, Politics

Here comes the hurricane

It’s 6.04am, and I’ve been awake for about two hours. I’m laying here in my bed, listening to David Ford (“So close your eyes and sleep” – I wish) and writing this in the hope that I’ll suddenly overload my desperately tired brain until it gives in and switches to standby. My legs, thanks to twenty-five years of nerve damage in my feet and as much joint damage in my knees, and despite making me pump large doses of Gabapentin – supposedly meant to make my extremities behave – will not stay still. They jolt, shake, compel me to wave them around, pound them against the pile of pillows beneath them, cycle them in thin air and pace silently around my less than spacious bedroom. I once read some know-it-all stating that “Restless Leg Syndrome was invented by drug companies to encourage idiots to buy placebos”. Right now, I would like to aim one of my involuntary kicks at his bollocks.

Okay, maybe, as Mr Ford is quietly singing into my ear, I should “cheer up, you miserable fuck”, but some days – especially in the early hours – the frustrations of being ill and disabled are harder to bear.

As I lay here, yawning and fidgeting, I have Philip Davies MP on my mind. He and his ilk have been making women and men writhe and scream, cry out and sigh in their beds for years now. Purely out of disgust, fear, stress and desperation. We know that this government, and so many others, will “sell out our kids for a tank full of gas…let the economy crash”, to keep the working classes, the poor, the ill and the vulnerable in their places. Right at the very bottom of society.

Mr Davies thinks that, to give myself a chance of employment, I should agree to work for less than the minimum wage. Maybe he is right that, wrongly, a potential employer would choose a less experienced or skilled but able-bodied person over me. And to be honest, right now, I wouldn’t blame them; as I’ve written before, I’m hardly a desirable employee because of the way my body plays tricks. But there are so many ill and disabled people who are, and whose expertise and skills are going to waste. Why not give incentives, if that’s what it takes, to businesses who enable disabled people to work, whether in the office or at home? Over the course of a single year, that expenditure would surely be counter-balanced by a reduction in benefit claims. I have disabled and ill friends who could start their own business, to be run from home, if they were leant a start up grant, to be paid back over a fair period, with base rate or no interest. No bank will give a benefit claimant a loan, but they aren’t vilifying us. We might not function – physically and/or mentally – the way we want to, but we are people, and we deserve the same rights as the rest of the population. So, Mr Philips, “will you just laugh and say I’ve got it wrong? Will you tell me what the fuck is going on?”

Every day we hear another story of another calamitous cock-up by ATOS. How hard is it to understand that putting people with serious health problems under a huge amount of pressure and stress will only make them worse? It’s easy to imagine them saying “heart problems? Let’s give you a cardiac arrest! Epilepsy? We want to see you fitting on the floor! Emphysema? Cough up half a lung for us! Then we’ll believe you”. Of course, we need to do what we can to ensure that the system isn’t abused; no truly ill or disabled person wants to see some idle cretin making a career out of the lives we never wanted, but not at the expense of the vast majority of people who do need help. How can these “tests” by ATOS be defended when people with late stage cancer are being told to return to work? It’s becoming clearer by the day that “‘This train was armed for collision” because “‘clever’ men know all that and all this and they will talk and they will talk, but they don’t fucking listen”.

Oh, Mr Cameron, “what a model of Christian behaviour, preach on with the message of ‘go fuck thy neighbour'”. Let’s be honest, we all expected this from the Tories, but having been kicked in the stomachs by the Lib Dems, Labour are coming to spit on us as we lay on the ground, coughing up blood. You see, “I believe lots of those calling the shots have no respect for the rights that we’re given….and I believe lies cost God knows how many lives, while some rich people made more money”.

Dear readers, “I wouldn’t have it all easy, so come on, let the hard times begin. Let’s kick through the hole in the wall of the mess that we’re in”.

“This is a call to arms”. Come and fight with us.

I’m off to get some sleep…if I’m lucky.

(Words in quotation marks are lyrics written by David Ford)

2 Comments

Filed under Disability, People Power

A Father’s Day toast to my dad

Today is my dad’s 28th Father’s Day. He has two human children, and one four-legged, furry one called Bessie. He says he loves us all equally (!!!), but us humans know who is top dog!

I often think that dads of disabled children are overlooked, as mums are more often than not the primary care givers (to able bodied children, too). My dad often says that he doesn’t do enough for me, but that isn’t true at all. As my consultant once observed, he is one of the special ones, and that’s an understatement!

A while ago, we were discussing the issues of parenting with disabled kids. I said, truthfully, I would much rather have EB and my parents than have neither. My dad said that, though he wishes he hadn’t passed on his EB gene, he would “selfishly” always choose to have me with it than not have me at all. He said that being my dad has made him a better man, and he couldn’t imagine life without me. I’m crying again just writing that!

It has been far from easy at times, our relationship. Mostly because we are so much alike and have been known to lock horns over such trivial things as carpets (yes, you read that right). But we’ve always loved each other, and, now I’m older, we are great friends. Apart from the odd tiff! We go to football matches, the occasional gig, watch films together and quote The Simpsons at each other (“One of you ate cans, one of you ate health food. How you solved crimes, I’ll never know”). We both love cars, and I’ve got into cricket and am beginning to not hate golf, whilst sneaking my favourite bands on to his iPod, turning Dad into a David Ford, Weezer and Muse fan (he’ll never come around to NIN or ATR, sadly), and he saves Johnny Depp et al interviews for me from newspapers. I’ve realised that, though he might not remember the courses I studied at uni, and has at times added or subtracted a year to my age, he knows me far better than I knew. He can read my moods, knows how to calm me down or cheer me up, and he always helps me to rationalise my fears. Dad understands my decisions when no one else does, and can tell I need a cuddle from the way I’m sitting. He drives me here and there so that I can have a social life, drops my friends home so they don’t have to walk or catch the bus, has sat with me while I get tattooed, bought home weird things that he knows I’ll like, and sat outside Brixton Academy until 11pm even though he’ll be up at 5am for work.

Dad is still there when I’m in hospital, and comes to sit with me in Recovery after I have surgery. He doesn’t mind if I vomit blood over him, and protects me when I’m too drowsy or in too much pain to speak. When I have a blistered eye and am screaming in agony, he still lays on my bed with me and cuddles me until the Morphine kicks in. Dad knows when I’m a bipolar bear, and let’s me cry snottily on his shoulder until I have no more tears. He’s even been stuck in two lifts – one directly after the other in Great Ormond Street – with me on the theatre trolley, two panicked nurses and an almost hysterical porter. All he cared about was me being okay (including telling said porter that if he tried to climb on my trolley again – to get out of the celling hatch! – there would be trouble) and getting to my bed as soon as possible. He’s taken me and Mum to Brighton, even though he hates shopping, so that I can have a nice day after having surgery.

Dad has believed in me when I haven’t, slept in chairs on hospital wards and in A&E departments to be there for me and Mum, had more days off of work (even though he is self-employed, won’t get paid and we’ll be short of money) to be with us than I can count. He’s run from the City to Lewisham when I dislocated my knee to get to me when the trains were stopped, driven me home from hospital at 10pm because I was desperate to sleep in my own bed. Dad has chased our guinea pigs around the garden and been scratched to bits, cleaned bird cages and tortoise houses so that we could have pets. And he agreed to having Bess because she made me happy after months of ill-health (I was 21 when we got her!).

Dad has always given me the encouragement to keep my spirit going every day, and walked a mile in the snow and ice to get my medicines to keep my body going. He has driven across London to get my pain killers and sat in pharmacies for hours to wait for them, just so I can sit comfortably.

He is currently renovating an antique desk and chair, so that I can have my dream place to write, overlooking the garden, even though kneeling on the floor damages his skin.

All of these things, and so many more, make my dad the best I could ever ask for. You might not change my dressings, or know how to measure out my medicines, but you’ve loved me all my life. That’s the most important thing of all. I’m incredibly lucky to have my dad in my life, but luckiest of all that my dad is you xx

20110619-211943.jpg

My dad feeding a two day old me.

2 Comments

Filed under Disability

Fit for nothing, but good for something!

Once again, the media – in all of its many guises – is getting its knickers in a twist about us layabout disabled scroungers, refusing to work and laughing at the saps who do. The Daily Mail even reported that people have been awarded Incapacity Benefit purely because they have “blisters”! How ludicrous, eh? I mean, it’s not like having blisters could affect your daily life, or leave you dependent on your family and carers, permanently disfigure you or carry off nearly thirty of your friends, or… Oh…wait a minute….

I’m not in the habit of feeling sorry for myself, and I’ve never thought “why me?”, but when these stories hit the press, I can’t help but curse my body for being useless in so many ways. You see, until a few months ago, I thought that maybe this year would be the one where I would find a job in an office that could accommodate me and my needs. Then I started a personal project in earnest, and the reality of the situation my body has put me in really hit home.

Having been given such a lot of help and support by DEBRA UK over the years, I wanted to give something back, other than giving talks and doing interviews. Not that those things don’t help or have their merits, but I wanted to do something more. When I a) became more involved with my burgeoning love of vintage clothes et cetera, and b) realised that finishing my Masters degree was becoming increasingly unfeasible, I decided the time had come to organise my very own fundraising event for DEBRA. How hard could it be? A few phone calls, a few emails, maybe some letters and hey presto! a event is ready to be enjoyed by all. Now, only a few months on, my naivety astounds me, and it makes me realise how much I’d been denying the true impact EB has on my life.

Firstly, making phone calls: I can only hold the phone with my right hand, the thumb of which repeatedly blisters and then becomes raw. Holding the phone either aggravates the blister, or causes the dressing to ride up and leaves the phone handset covered in wound “ick” (technical term there!). That would be lovely in an office, wouldn’t it?! Then there’s my mouth, which, when blistered, causes me to sound like the Elephant Man. Try phoning a company for a donation when what they hear is “El-oh. Ahm or-ha-ni-in ah fuh-ray-in uh-ven”, and that takes an age to say. If those two aren’t a problem, there are always the oesophageal spasms which suddenly take hold, leaving me gasping for breathe and rigid with pain, unable to speak. Or, there’s just the absolute fatigue that comes with chronic illnesses. Thus, my marvellous mum has done the majority of the ‘phoning around for me, including several hours when I was exhausted on my hospital bed and imbibing opioid pain killers. Are you a business owner who wants to employ a twenty-five year old and her mum to do one job? If so, we’re your women!

Emails aren’t without their difficulty, either. Having deep ulcers at the tops of my thighs makes sitting upright very painful for me, and so I have to lean to either side alternately. Try typing on a laptop, which is balanced on your hip and making you very hot, with your osteoporotic spine twisted around and see how much you get done. That’s if my eyes aren’t blistered, or the brain fog isn’t so dense that I can’t remember how to explain my own disease. If anyone knows a company where sending an email saying “I’ll get back to you when my bum calms down” is acceptable, please let me know!

Arranging meetings is like something out of Challenge Anneka (look it up, kids). I can’t imagine important meetings at a work place being deferred because I’m having to lay with my legs in the air to ease the pain, or because I’m having my oesophagus stretched again, or have a Colitis flare-up (wherein my mum has taken phone calls and passed messages through the bathroom door). I could only do that with my event because I’m organising it with friends who understand my situation, and know that things can change at a moments notice with me. It is far easier to find friends who accept the “EB permitting” caveat than it is a job or employers.

There is also the issue that the vast majority of the organising of the fundraiser has been done either at my home or from hospital rooms whilst I await surgeries, usually with me in bed (mine or one at St Thomas’ Hospital) wearing my pyjamas. I also send many of my emails during dressing changes, even though the distracting pain can cause errors in my messages, or late at night when my discomfort is keeping me awake.

I’m sure this sounds terribly depressing and negative, yet despite all I have said here, the continuing experience of pulling this event together hasn’t been a horrible one. Vastly because it has proven to me that the majority of people are not just good, but kind and generous beyond my imagination. So many people, especially those I have met via Twitter, have put their hearts into helping me and my friends to help DEBRA. And I have made friends, wonderful ones, because of this; friends who I had never met until they heard about my event, but who have given so much time and love to it. There are independent crafters and jewellery makers who have taken the time and effort to make pieces for us to raffle, small businesses who are giving to us even though we are in austere times, and who have pledged more support than I could have dreamed of. A Forties style singing trio, who emailed and asked if they could play for us for free (then thanked us for saying yes!), and bloggers who have offered to write about it – including The Broken of Britain’s Lisa J. Ellwood, even though she has tons going on and should be resting! – sharing their expertise and readership with us.

I’ve also encountered several emails and tweets with messages like “I know it’s not as bad as EB, but I have…”, with revelations of what people are living with. For the record, the severity of one illness doesn’t negate the difficulties another person is experiencing, but it has widened my circle of “differently abled” friends in the best way – not purely because we have health problems in common, but because we have shared interests.

While this project has shone a spotlight on my limitations, it has emphasised knowledge my heart has been trying to convince my brain of for some time:

1) Though I may not be fit for work, or good for employment, I am good for something. I just need to be able to pander to my body when it demands attention – which I couldn’t do in normal employment. Having a disability does not mean that I cannot contribute, it just means I can’t contribute in the way the majority of the media has decided I should.

2) Britain is not broken, but full of wonderful people, in all classes, ages, races, religions, jobs and bodies – the only thing that is broken is the view the government has of the people it should be serving. The minority of the “bad” people is so small, it’s laughable that the government and media waste their time working themselves into a frenzy over them.

So I dedicate this to all of the amazing people I now know – you haven’t just helped DEBRA, you’ve helped me, too.

2 Comments

Filed under Disability, People Power

Soul on my skin

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’.

As the chief said this, my dad leant forward and said “like yours are for you”.

And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them.

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body.

For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again.

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more.

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying.

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be.

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

1 Comment

Filed under Uncategorized

The Brain Fog

I think I’m the only disabled person I know who doesn’t refer to themselves as a Spoonie. It’s not that I have anything against the term, and I can understand why people do use it, it’s just that I never have. Probably because I’m too lazy to explain the concept to people, tending instead to say “I’m in constant pain and my body is working harder than most, both of which make me very tired”. Subtext – I’m not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn’t even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I’d always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it’s complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don’t call myself a Spoonie, one term took a figurative leap off of the screen and shouted “Yes! I actually exist!” – the Spoonie brain fog (search for #brainfog for evidence).

I don’t remember having the brain fog until the end of my first year at university, though I’m sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I’m lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn’t occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn’t a failure in concentration on my part, it wasn’t stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don’t. People around us see the surface, but they don’t see the frantic paddling our bodies are doing beneath it. When you’re born with a disability or illness as I was, it isn’t any worse than developing one, it’s just maybe more difficult to understand what is usual and what isn’t, as there is no ‘life before’ to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It’s a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course – two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven’t really accepted that this feeling befuddlement isn’t going to leave if I shake my head hard enough, I feel much easier now I can email TBoB team back, as I did last week, and say “I’m out of the loop”. And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

3 Comments

Filed under Disability, People Power