I feel such emotion reading the last words of this story. I can feel her pain so much, the sense of hopelessness. I feel the same thing when I see my sister so ill, this dark shadow creeping across the world stealing people’s live’s away and leaving them in suffering, agonised filled darkness.
Today is Chris’s story. I met him very recently via a M.E magazine ‘friendship page’ And now it feels as though we’ve always been friends. With darkness comes light.
His door is open to show how he is starting to win against the M.E and re enter the world behind the door. He also contributed this adorable little elephant.
I met Kat while drawing occasional artwork for the M.E magazine she was in charge of and we quickly became close friends. One thing M.E and Lyme does is take away your hobbies and passions, but we fight back and find alternative ways to still achieve those ambitions. I’m lucky to have so many wonderful people fighting this condition and we unite to create a Spoonie army.
Today whilst I feel little better, I spent about a minute trying to decide how ‘my’ was spelled. I even was preparing a text to ask Mum!
The initial project started featuring front doors but I soon realised that everybody with these conditions mostly spent their time housebound or, heartbreakingly bedbound and their bedroom doors were the doors which were closed on them.
I felt Kat’s story was very moving, it’s that bit at the end that is really a punch in the stomach, something needs to be done in the medical community but we are like ghosts, they don’t see us, refuse to believe in us while we fade from reality.
The first doors have arrived and something unexpected has arisen out of it, I’ve met some lovely new people, we’ve shared our own experiences and stories and reinforced the kindness and love of the spoonie (people with chronic illness) community. We are all in this together.
So far I have doors from everyone from the USA, the Uk, even the Netherlands. Regrettably I wasn’t able to complete the project for M.E awareness week as I just wasn’t strong enough, everytime I worked I ended up with a headache and felt too exhausted to do anything all day. This isn’t a failure, if anything it is a positive reinforcing the project and my own personal experience and showing how the illness changes everything.
Sophies Story – in the form of a poem she wrote
I had a great response from my search for M.E and Lyme suffers doors.
To mark M.E awareness week and Lyme awareness month here is the first door. I asked the suffers to send me a photo of their door showing the life that is behind and is so often ignored. The door is symbolic in many ways and one such way that came out of the project was how many people especially in the medical field have shut their door on us. The door is slammed in our faces and we are told it is all in their heads. Dismissed, just like that to live a life of pain and suffering. The injustice is almost as painful as the excruciating pain our bodies are wracked with. For the moment I am featuring the two together but it shall be presented in a photobook format.
This is Greta’s story
If you are a Lyme or CFS M.E sufferer, please comment below if you would like to take part. All I need is a photo of your door showing the top and bottom and some words on your story, what you want people to know about the condition or even a poem.
“Do the scary thing first and get scared afterwards” Beatrice Baudelaire – A Series of Unfortunate Events
This was already my go-to quote in scary situations yet somehow after talking to my tutor on Skype the scary situations I was facing dwindle into pale insignificance. Situations such as being at an art lecture and summoning up the guts to ask a question, for my voice to echo around the room with everyone looking at me, or to go up to a guy my own age (still not happening). After what my tutor wants me to do suddenly I feel I could speak to every guy my own age, heck I could ask them if they wanted to have a coffee.
I was talking to Les (my tutor) about Assignment Five, the self-directed project and how I wanted to simulate and capture a murder mystery of the landscape. “Something about, fracking,” I said chewing my pen thoughtfully. At the word Fracking Les suddenly burst into life, it was clear he approved thoroughly of the idea, burned with fury at the injustice, the fact that our local constituency had reached a verdict against the Fracking and then was immediately overthrown, the government crushed us, stamping on the local constituency as though we were a small ant that was messing up their caviar sprinkled five star afternoon tea.
I said I would create interviews. Just as I was about to say that I’d use my Godparents and friends to act out the role Les said:-
“The frackers and anti-frackers,” he said animatedly. I suddenly realised what he wanted me to do
“OH, I don’t know about that!”
“No do it, do it do it! Actively engage with them and see what they want, they’ll want to talk to you…”
Luckily I was making notes at top speed because my stomach was in turmoil at the thought of going up to these people to photograph them, interview them, but Les was continuing, find them online, go to the websites, go round to their house to interview and take photos.” According to my Mum who had just walked through the room my face was already burned with shyness and gasping like a landed fish!
My tutor said I shouldn’t feel scared about pointing the finger, that he and everyone would be behind me. That makes me feel like I’ve been pushed into the frontline by all the police, their shields against my back pushing me into the middle and all the anti- Frackers as my army.
Well, the course wanted creativity. And if I want the best mark I guess I’ll have to summon up some guts. I am a brave person. I feel I’m a coward, that I’d always be the person the zombies got, or the character in a movie who cries through the whole adventure. But that’s in my own mind. When I’ve actually been in a truly scary situation somehow I can become very strong, take matters into my own hands. So I will do this. I will be brave and contact these people. Even though it makes my heart pump hard and my stomach to squirm with snakes I’ll ‘fright’ through it. Because already since speaking to Les it’s about the little people, how our way of life and freedom of speech is a myth and we are controlled by those higher up who do what they want, stamp on who they please. Whilst I feel very very uncomfortable using the word, the murder mystery is almost a rape case, they are raping Mother Earth, our lives and freedom. We may be able to speak out about it but they don’t actually listen which means our freedom is an illusion, something given to keep us quiet. Some dare not speak out against their attackers. I do think this assignment will turn into something else, something I hope, quite powerful. Les said not to start with wondering what the result would be or how to go about it. He said to have no pre-conceptions or ideas just to launch straight into it. I guess Ill have to calm the squirming snakes and do this.