Your body is the bridge between your inner self and the world. The bridge that connects your thoughts and personality with the world outside your own mind. With people, with places, with experiences. The world shapes you, and in turn who you are affects others and the physical world that surrounds you through your actions and words.
So what happens when this bridge collapses? There’s a divide. There’s an open gulf between the world inside your head, the very essence of ‘you’ and the physical world that you inhabit. You feel isolated, cut off, and alone. You can no longer participate in life, whether it’s work, social events, or hobbies. You no longer have funny anecdotes about strangers on public transport or the time you locked yourself out. Because these things don’t happen to you as you don’t go out. You don’t travel anymore, you don’t learn new skills, you don’t have that constant flow of the outer world penetrating and shaping who you are. Your world shrinks down to one square room, or a series of square rooms and largely, the world inside your head.
You don’t make much of a difference to the outside world either, it doesn’t know you exist. It can’t see you laying in bed, surrounded by pills. It can’t see you in the car when your seat is so reclined that you’re nearly horizontal. It can’t see you in the doctor’s waiting room when you sit in the corner with your head in your hands. You’re invisible, you fall through the cracks. You’re an NHS number, someone who used to do something but now has been in limbo for so long no one knows you anymore.
You desperately seek attachment, approval and a voice. You angry-type Facebook posts about politics, trying to feel engaged. You pour your soul into a blog, trying to feel understood. You put every last ounce of your energy into seeing friends, trying to feel connected. But when the friends leave and you shut down your computer, all you’re left with is your broken bridge, the cracks, the creaking and the rot. The emptiness and a yearning to be back out there experiencing the world in its techicolour wonder. And the fear, the pit of your stomach panic rising from the possibility of the suffering continuing indefinitely.
You watch them from your bedroom window. The healthy people with their shiny shiny bridges. They show the world who they are through their clothes, their hair, their make up. They choose where they go and how fast they walk to get there. For us, the clothes, the speed and the location is decided for us. By the illness that has broken our bridge and our connection to the world but has not yet drowned us fully. We are not gone from the world, but we are no longer part of it. We’re the decaying remains of a once useful structure that had a purpose but is now forgotten. Open to the elements and long abandoned by the maintenance crew, the bridge breaks down piece by piece but it’s soul remains. Under the cobwebs, the rust and the rot there are still pieces of the original detail, you just have to slow down and look a bit harder to see it. The spirit is still there, even if the paint has peeled.
I take photos. Lots of photos. They’re not award-winning quality but they’re priceless to me. Photographs are my way of letting the outside world into my inner experience, and letting my experience seep out through the images. It’s vital self-expression of my turmoil when my voice is too weak to talk. It’s a solid and permanent record of my feelings when there’s no one there to see them. Nobody writes songs about severe chronic illness, there aren’t any oil paintings in galleries of patients in waiting rooms with IV drips hanging out of their arms. There aren’t poems about the desperation, abandonment and anger at a healthcare system that simply cannot cope with you. There are a thousand heartfelt ballads about love, sex and even money, but none about health, illness or losing hope. (Sia and Coldplay aside; who are permanent fixtures on my playlists.)
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We need to start making more music and art about all aspects of human experience. We need to embrace the feelings of suffering and fear as much as those of love and lust. We need to engage with all people, not just the shiny healthy highly achieving people. We need to give everyone a voice and hear all the voices. It’s not ‘teenage angst’ to show negative emotions. It’s not ‘having a breakdown’. It might be upsetting and uncomfortable for people to see, but isn’t that what art is about? Isn’t that what life is about? All of it, in its raw entirety.
We need to bridge the gap.
So even if you’re not creative, try taking photos, or drawing, or writing or anything that lets out the tempestuous fire in your soul, your grieving aching heart, or your naked unadulterated fear. Feel all the feels, and invite the world to feel them with you, you might be surprised at the result.