Monthly Archives: April 2011

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.

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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.

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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!

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Mother’s Day? Same as all the others

It feels like an age since I’ve blogged here, but equipped with my new iPad, I’m now more able to write in comfort. So I’m back to blogging!

I’ve just finished making my Mother’s Day card, as Mummy Jelly (as she is known to all on Twitter!) requested a homemade one this year. I have a severe lack of artistic talent, so were talking little more than stick figures drawn in felt pen, but I did write her a poem, so it’s not all bad.

To make up for my lack of skill, I used photos of my mum and me from over the years; me aged at ten months, six years, and twenty-three years (taken last May). And it made me think about how every year, Mother’s Day is really no different to any other for my mum. I can’t make her breakfast in bed and, even before opening her cards and gifts, she will put my morning blob of ointment in my eyes, then measure out and administer my medications. Then she will help me wash and dress, get me a drink, cook my Sunday lunch, liquidise it…the list goes on.

I hoped that we would have some help by now, as we’ve been looking for a carer to come in for a few hours a week, but so far we’ve had no luck. And even when we do, they couldn’t provide the nigh on twenty-four hour care my mum does.

The pain and discomfort of my disability and my illness can (for the most part) be managed, with pain relief and strength of mind and character, so if it only impacted on me, I wouldn’t hate EB so much. But I despise the fact that it means my mum is always a carer, never just a mum, a wife, or most importantly, a woman. She always has to take me and my needs into consideration, not even painting her fingernails in case it flakes into my wounds, or wearing rings in case they harbour infections. And even when I tell her I’m fine, and force her out of the house to meet her friends, I know she worries. Though I do smile when she comes home saying “I saw a woman pushing her daughter in a wheelchair in Marks and Spencer, and I missed you!”.

Though I sometimes wish I hadn’t been born with EB – I never enjoy it, but mostly I just accept it for what it is – I never wish that I hadn’t been born to my parents. I would always choose to have them and EB over having neither.

Every day I am thankful beyond expression for every single thing my mum does for me, but in Mother’s Day it really hits hard. That’s why I’m sending love and thanks not just to my mum, but to every mum around the world who is also a carer. It’s a tiring, often lonely job, and it is only going to get harder in the face if the government cuts in the UK. I’m one of the lucky ones who is able to actually put my arms around my mum and give her my thanks and love, but many daughters and sons can’t do that.

So while all mums are amazing, please spare a thought for carer mums tomorrow. They won’t have time to think of themselves.

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