Bound is an Art Project
Bound by a sickness
I battle through everyday
Bound for Greatness
In 2009 I was diagnosed with Ehlers Danlos Syndrome III a rare connective tissue disorder. My symptoms include severe pain, excessive weakness and dysfunctional organs.
Bound meant I didn’t have to be afraid anymore, it gave me purpose. It soothed my pain and calmed my dark thoughts. It gave me my life back.
In 2009 I was diagnosed with Ehlers Danlos Syndrome III a rare connective tissue disorder. My symptoms include severe pain, excessive weakness and dysfunctional organs
I sat there in my shiny box
Batted my eyelashes
Offered you my love.
When the Dr came to see me, he was really good looking and I smiled at him and he smiled back and then he pulled on some plastic gloves, squirted some lube on his fingers and asked me to turn over
Part of this illness affects the digestive system and the sufferer is forced to undergo a number of intrusive procedures to look at the function of the intestines. One of the procedures involves a camera being inserted into the back passage whilst the patient is still awake.
“It quickly became clear to me that there is no dignity in illness. In fact, there is a complete violation of your body. You are prodded and poked, stripped down, lubed up, pricked and all manner of things are inserted into every crevice. You are ‘investigated” and this investigation has no boundaries or privacy.
I felt so vulnerable at first, then angry and then mistrustful. There were so many hands touching me and so many eyes seeing parts of me that even I’ve never seen. I had to learn to see the humour in the experience, it was the only way I was going to feel comfortable. I had to remember that when people took me to the bathroom, I was still me and I still had my dignity even though my knickers were round my ankles.
When the Dr came to see me, he was really good looking and I smiled at him and he smiled back and then he pulled on some plastic gloves, squirted some lube on his fingers and asked me to turn over. That is the reality of being ill. Its intrusive, its ugly, its unsavoury. I felt like the girl in this picture, all glammed up but with my knickers round my ankles, completely exposed, being prodded and poked with not much say.
Ultimately I feel like I've lost my dignity and the only way to counteract this deep feeling of vulnerability is to act like I don't care. Sure you can help me to the toilet, sure you can put a pipe up my rectum, sure you wash me. It doesn't matter, can't you see I'm fabulous…
Look I've been dropped a couple of times so I'm a little broken but it's the cracks that make me beautiful
Since falling ill I struggle with everyday tasks as simple as taking a shower and am confined to a wheelchair when I go out due to weakness, dizziness, a heart condition and pain when I walk.
I sometimes wish I were wearing this fragile warning tape when I go out in the wheelchair so that people would heed the signage and treat me delicately.
Being in a wheelchair means you are exposed and on show and people have reactions, judgments and lack consideration. They often see you as an inconvenience or worst still behave like they don't see you in a clumsy and nervous fashion
In my case, people behave confused "what exactly is wrong with her". I see their questioning and it feels almost accusing sometimes,
You're not really disabled.” “You don't look ill". Imagine how that makes me feel. The physical pain is enough but this is coupled with emotional pain whenever I go out. I feel the need to explain, "Hey, I might look ok but I’m suffering every day". I am broken physically and mentally and I wish people would understand. It would be easier if I could just wear the tape
I was working in the film industry producing a 1.5 million film and writing and directing for top producers when I fell ill. I lost everything I had worked for after her diagnosis including my Media Company offices, my car, my flat and I even had to sell my shoes,
“ I felt like I was living my dream. I was travelling all over the world, drinking champagne and knew so many people. I was working in an amazing industry, setting my sights on Hollywood and living like a star. Then this illness hit me and everything changed. It all went away, my light went out.
However now that I think about it, I feel so much more comfortable in my skin now. That world was alien to me. I was surrounded by people who were attracted to the fake and the plastic. I was living in an illusion. This experience has taught me about myself. It’s showed me who my friends are. It’s taught me that I’m not reliant on the façade to be amazing. My light is within me and I can let it shine naturally.
Sometimes I feel like lashing out
The anger, it torments me
I can’t shake the feeling
Why did this happen to me?
What do you know?
What do you really know?
You’re sitting there thinking what?
What do you really know?
I grew up in church.
My gran would take me every day from when I was a baby and after she passed I continued to go. No matter what happened I believed and had so much faith that God would bring me through. I would pray often. I wasn’t so good at reading my Bible but I have a good memory of it from memorizing and reciting verses in Sunday school. My whole family is religious actually, God is in our DNA.
But I was so angry in hospital. As the uncertainty of the illness grew and time passed, so did the anger and resentment. I couldn’t understand why I had to be the one to suffer in this way. I hadn’t been a bad person. I had trusted and served God to an OK standard. Was he not seeing me?
Here are some of the things people would say to me in relation to God.
“Pray and you will be healed”
“God doesn’t give you anything you can’t handle”
“Everything happens for a reason”
“If you’re not being healed you don’t have enough faith”
“God made this happen to you because you’re on the wrong path”
Here is the question I kept asking
“Why would God do this to me, haven’t I been though enough?”
When you read these comments, I hope you can understand why I created such an irreverent picture. I’m rebelling against an establishment. The church looms in the background and I’m dressed as a punk. It captures how I felt at the time. Angry, mad, despondent and unable to pray.
This is my life
Is not now.
It’s what to come
I’m not the only one
Who feels I’m done
When I’m overcome.
But the highlight is not my strife
It’s my light
I turn on in the darkness
So all can see
I have the ability
To hold on
Because I am still happening
My time is not up yet
And I don’t dwell on regrets
That life is in my debt
I’m owed nothing
And owe something
To myself to make it through.
There is no known cure for this debilitating condition and symptoms are managed with a concoction of medication.
“When I realised that I wasn't going to recover easily, quickly or perhaps not at all from this illness, I didn't know what to do. I had so many dreams and goals and suddenly it felt as if I would no longer be an asset to this world.
I was going to be a burden. A burden to my family, a burden to society, incapable of contributing anything to anyone. I sat and contemplated this new existence, I felt completely worthless and couldn't really see the point of carrying on, I may as well end it, I thought.
However the caterpillar struggles through its cocoon before it can become a butterfly and a rock undergoes immense pressure before it becomes a diamond. I slowly began to see this illness as less of a torment and more of a metamorphosis, a struggle into something greater than I was before. I saw my worth in a different way. I could still contribute to my family and I still have so much to give to society. How? By allowing myself to be me regardless of this illness and realising that rather than being worthless, I am worth more than ever before. I am valuable. I can still shine and I will still go on.”
Bound meant I didn’t have to be afraid anymore, it gave me purpose. It soothed my pain and calmed my dark thoughts. It gave me my life back.”
Samona Naomi Williams is a Film Director who was bound for stardom but was unexpectedly halted on her path to success by a debilitating illness. BOUND is her tragic story told the only way she knows how, through Art.
BOUND is an Art Exhibition featuring a series of photographic images which depict the journey of moods that an illness can bring. In a never seen before showcase, witness images from the disturbing to the profound as the true feelings of the inner mind at a time of suffering and illness is displayed in a stark, thought provoking creative experience.
BOUND will take you through a intimate and personal journey in a filmic, all encompassing experience, with second to none photographic images expressing, amongst others, feelings of madness, abandonment, fragility, pride, pain and worthlessness. Witness a completely fresh perspective on disability, an unprecedented interpretation as shocking as it is eye opening.