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.
Happy 1st of the Month everyone. This is the start of Lyme awareness month and also M.E awareness week. I’ve written up a post regarding the Assignment and have posted it on several Facebook groups dedicated to both illnesses. I’ve had a lot of engagement with projects on these pages before so I’m positive that I will get enough people to take part.
Reading the module I’ve decided to submit the project as a photobook. Portrait to reinforce the door imagery and the idea is that as you turn the page with the door on, you open the door to a pure black page. This black page represents the darkness that those are in with this condition, both figuratively and literally as many suffer from light sensitivity. When I say light sensitivity I mean daylight burns the eyes. My sister can’t even have a desk lamp on. Even a salt lamp causes pain. What follows is many people living their lives in darkness. So the black page reinforces this. Then on the black page is white handwriting, shining out of the darkness, that is the symbol of hope that one day this condition will be gone. It is also a cry for help. M.E and Lyme suffers, especially those severely affected, struggle with writing. Holding a pen causes such intense pain. For those who can submit a small piece of handwriting I will replicate it (I once spent a happy summer reading a book on handwriting and copying different styles for fun,, so feel I can acheive this)
I have written to my tutor to inform him about this, I hope that he will have no qualms about a collaborative essay, but as I have done all the groundwork I’m sure it will be fine.
Returning to the reverse out writing I’ve always liked imagery about light in the darkness
“Stars can’t shine without darkness”
“Hope is being able to see the light despite the darkness”
“A light shines brightest in the darkness”
The question is what sort of text should fill the black page. Perhaps the sufferer should choose whether to submit a small poem, a day in their life, a statement or their story. I will write on behalf of my sister her story. Perhaps I will offer the book as an ebook somehow and a portion of their sales will go to research for these terrible illnesses.
Already I feel that the project has scope to be powerful and emotive. I’m aware I must contextualise. Sometimes though I find it hard, ideas flitter out of the darkest places in my mind, unexpected, all at once thrilling and inspiring. The idea is created from my imagination and initiative, almost like waking up from a dream with snatches of ideas. My tutor asks which photographer inspired you to do this and though the answer is, my mind was the inspiration, I know that this isn’t acceptable in a degree. Which is a shame because I feel that the idea of doing a degree in the creative arts is generating your own ideas from yourself, telling your own story and not neccessarily using someone elses idea. At least for me that is how I’ve always worked and I sometimes work backwards finding photographers and artists after developing my idea. Do you know anyone who does this?
After a six-week relapse of being unable to do anything except watch TV and rest, I feel a little better and am going to tentatively try to return to my studies once again. Thank you for the kind messages and support I really appreciate it. How is everyone getting on with their studies, please comment your latest work below so I can go and look.
I feel like my day is full of blue skies once more instead of really thick fog.
At the start of my relapse, I contacted the OCA to let them know I wasn’t well and they were very kind and understanding. It also turned out I only had until November to finish this module, talk about a wake-up call! I didn’t realise I had run out of time. Then I have several more years to complete the next Level. So needless to say I need to get a move on.
My Plan was to continue from where I was up to but I don’t yet have the energy to read Deborah Brights essay, let alone write my own. So to conserve energy but still make progress I am going to jump ahead to the next unit where I create my own brief for an assignment.
I’m going to go ahead with my new idea of “lives behind closed doors’ and try to tie it in with M.E awareness week which is coming up. I feel that the assignment will be stronger as it shows I have thought of the audience and perhaps it will raise some awareness. This assignment is different in that it is a collaboration, while I email a brief to everyone who takes part they will essentially take the photo and I will present them together showing the lives we do not know about behind closed doors. The fact that it is collaborative will save me energy enabling me to continue with the course.
At this stage,. I am wondering a few things
Should I make this assignment solely for CFS M.E/Lyme suffers to tie in with M.E awareness week. Or should it be open to all invisible illnesses?
Is it considered my assignment if I have only taken one of the photos? If I didn’t have M.E/Lyme I would go to the houses to photograph them which ties in with my assignment, I too have M.E and cannot do that. The spoonie world have to team together. That’s what is highlighted here
Should I use their handwriting to be posted underneath the doors to reinforce the idea that this is a real person suffering? Or should I write by hand over the photos as I did in Assignment Three – Snippets.
Should the photos be of doors? Should the doors open – how would that happen? Should the words be behind the door. Two photos hmmm
Any thoughts or research suggestions would be very much appreciated.