Vanessa Potter experienced a brain injury from a sudden inflammatory response triggered by a rare autoimmune disease. Within two days she went completely blind and lost much of her feeling and motor skills. She regained her sensation and motor abilities and partially regained her sight during an extended period of recovery. Because vision is represented in many areas of the brain which are normally coordinated, and because her brain was not processing naturally, Vanessa experienced many visual aberrations. We are not aware of our visual processes and cannot access them as we cannot consciously access most of our brain activity. Vanessa learns about the complexities of vision first hand as she loses her vision and as parts of it return to be reintegrated. Her story, and her telling of it, captures you like an engaging novel. I have chosen a few excepts to give you a flavor of her experiences and her writing.
“How does anyone explain what he or she sees anyway? It’s completely one-sided. This seeing that I am experiencing is nothing like anyone else’s seeing. We are not even starting in the same place. My seeing is conscious, an effort and something I have to will myself to do, and it’s exhausting. For everyone else it is an automatic reflex – a given.”
“I just want to shut out the world for a while so my brain can rest; it’s a war zone in here.”
“I need constant rest. Even a short conversation can leave me almost winded, devoid of any energy and with my body silently shaking in disapproval.”
As Vanessa must rely on her other senses due to her loss of vision, she becomes even more sensitive to the attitudes of her health professionals as they are no longer masked by their appearance. Her reaction to the platitude “It’s a waiting game” is: “If they only knew how long waiting takes, and how much energy it uses up.”
“How do you explain to someone that you have lost the very thing that they don’t even know that they have?”
“It is a difficult balance of doing enough to be occupied, but remembering I am still ill and need rest. The moment I do too much or go too long without a break, my whole body starts to jitter.”
“We try to do normal things, but it’s forced and feels false somehow. I don’t know when the transition occurs, when normality creeps back into a damaged life – yet it does.”