Re-imagining my disease…

I like to make up stories to comfort myself. Today’s pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it’s because she’s battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that’s how she’s able to survive where others wouldn’t. I wish her well!

One of the most important things I have learned over the course of my disease is that there’s no use making excuses. People can’t see my illness, so they don’t understand what I’m going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I’m going through, and preoccupation with managing my symptoms. But that doesn’t change what it looks like from the outside. I could say it’s not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I’m a princess and will ask for the comfortable chair from you. [...] continue the story

Planet of the Blind

Planet of the Blind is an artistic interpretation of Stephen Kuusisto’s courageous life story, as described in his memoirs. Stephen was born visually impaired. Reflecting his mother’s denial, he grew up pretending he could see. He marched everywhere at dizzying speeds without a cane, ashamed of his blind self. The film explores the struggle and beauty of blurred vision. By offering a sense of reduced vision, the film creates an experience of disorientation while emphasizing the poetic beauty and sense of discovery inherent therein.