“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