#NaNoWriMo 2011 (#disability #spoonie #mentalhealth) - by @CreativeCrip / @IconicImagery #TBofB

"This year I hope to finally set a realistic and achievable #NaNoWriMo goal by focusing on writing blogs for thecreativecrip.com #amwriting". Thus read my first social media status update for 1 November 2011. I am feeling "OK" today and unlike many others in the UK, last weekend's time change seems to have helped me a bit with managing Spoonie fatigue, the pain.and brain fog notwithstanding. After a mad round of tweeting I managed to crawl out of bed and get going.

A well-meaning new-found long-lost relative from across the pond decided to comment on the Facebook entry; "truth is I'm strategic..." she wrote. "...the goal is achievable you have to trust yourself to make it happen."

This was my response:

Not being funny but - as someone who has complex health problems (physical disabilities, illness and mental health) all the planning, strategies and jolly hockey sticks cheerleading in the world cannot guarantee a result. That's just #Spoonie reality - we do what we can, when we can ... unfortunately more often than not it means struggling immensely to do not very much at all... I give myself these pep talks and try strategies every year for #NaNoWriMo but don't really care if I actually manage to submit or even finish... its just helping me to focus on my blog and get some things done that I've neglected.

The thing is, I really would like to achieve a National Novel Writing Month win; I've wanted to for the seven years that I've tried. It's only in the past few years that my increasing problems with concentrating, memory and ability had nothing to do with just being lazy and more than a bit to do with the severe clinical depression that went undiagnosed since I was a teenager battling the Bulimia I still struggle with from time-to-time on the cusp of 46. The added struggles with physical disability and invisible illness makes it even more challenging to get started or keep going even if I do. Even a simple post like this has taken hours, with many stops and restarts.

I am blessed for every day that I have to actually wake up and The Great Spirit willing, I will have many many more. Unfortunately (as I explained to the psychiatrist at my last CMHT check), every night I go to bed my head spinning with a few ideas of things to work on the next day. I make notes in my project books and smartphone when I can manage to not forget within a minute or two of having a scathingly brilliant idea. Then the sun rises and sets again without any of those things getting done. Thus is the vicious circle that constitutes my spoonie not #fitforwork life, day-in and day-out.

Unfortunately it is impossible to have a "normal" schedule. For those who would criticise that sentiment and make a "scrounger" comment; review my LinkedIn profile. Even if I hadn't had my previous career on Wall Street and in The City of London, the life I am forced to lead today still wouldn't be a lifestyle choice. I would gladly give up my need to have help from the State in return for good health and mobility.. I need help - in the form of a Careworker who visits a few times weekly so I don't have to go for months on end without being able to have a shower or shampoo my hair; someone who could take me to the supermarket and help with shopping; someone who would be willing to help me keep my flat tidy and make sure I don't ignore the brown letters of doom from the DWP; someone who would be willing to prepare meals that aren't burnt beyond recognition and make sure that I eat them; someone who could actually be a Lovely Carer (tm @BendyGirl) - which would help me immensely.

I have big dreams and small; and yes, a little fame as a writer and campaigner wouldn't unwelcome. But as Lydia Grant used to say in the opening of the Fame television series: "Fame costs, and right here is where you start paying - in sweat". Like the majority of people in my situation or worse - I'm not afraid of hard work and never have been. The relentless onslaught against disabled people from politicians, government bodies, general public and media takes a toll on my health. This, along with the  lack of Care in my daily life and constant worry about my finances, needing business help and having to move house again etc, makes something as "trivial" as trying for a NaNoWriMo win feel like trying to go up an icy hill alone on rollerblades. I may fail again; but in the words of Bob Hoskins in Maid in Manhattan, what defines us is how well we rise after falling.

I may be disabled, but I'm not dead yet.

Lisa J. Ellwood

Disability & Mental Health Campaigner

The Broken of Britain

Cross-posted from The Creative Crip Blog

Related articles

• NaNoWriMo is Here! (lifesmaze.wordpress.com)
• NaNoWriMo (ghostwritermummy.wordpress.com)
• Happy Halloween and Hello NaNoWriMo 2011! (dailypost.wordpress.com)
• What I learned through NaNoWriMo (enermazing.wordpress.com)

Soul on my Skin #TBofBTT #TBofB

“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.

By Melissa Smith, @queeniejelly - TBofB

Originally posted here