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Navigating the Body

© Cynthia Webber (Jausten)

If I were an artist, my dream would be to tap into my creativity and show others a picture of what it is like to live with fibromyalgia. I am a writer, and it is even difficult at times to express in words how I view my life now. By using words, I can express myself and how I feel about having a chronic condition, yet at times my words aren't enough.

Pain and fatigue mean different things to different people. If I write that I am in physical pain, those who also have fibromyalgia can understand only to the degree that they have had the pain which my words are trying to convey. When I write that I'm in a flare, those with fibromyalgia know what I mean, but the general public can only see that I look healthy, unless they look closely into my eyes and see the pain within.

Things which are unseen are more difficult to understand, and yet most of us depend upon our sight to view not only ourselves, but the world around us. At times, I am able to draw a picture of my life through my words, but when the fatigue, pain, or mental fog rolls in, I'm at a loss for words. At times, I struggle to find the words to share my experience with others, but the English language doesn't have enough words to adequately show the depth of my loss, emptiness, and despair.

Navigating the Body is a web site created by Susan Harman of Vancouver, British Columbia which expresses in both art and words the stories of three women who are living with fibromyalgia. Susan's objective was to use art to translate personal narratives into a visual representation that would validate women's experiences of pain. Susan had the women over for many lunchs, after they had agreed to participate, and they discussed together and then later one-to-one how they would divide their experiences up into segments. From the writings, the women began a series of storyboards and started the biggest and most painful part of shooting the scenes. The three women, Donimo, Karen, and Rose, along with Susan found this to be a profound and painful collaboration.

Navigating the Body began approximately five years ago, and although Susan originally was going to create a video, she decided to use the internet in order to reach out to more people. Her web site is set up so that people around the world can comment on it, share their own stories, and most importantly, feel that they are understood. She uses a series of digitally manipulated images with words from the three women, and thus, she has re-created the pain, frustration, loneliness, and loss brought on by the unseen condition of fibromyalgia.