What happens when you are suddenly dragged to a dark black abyss where you can't move nor see anything surrounding you?
José Saramago's book Blindness opens with a man stranded in the middle of the traffic when suddenly he’s blinded by an extremely bright white light. Someone manages to take him to his place and then to the doctor to see what happened to him. Soon, those near him start to experience the same signs of blindness in what seems to be a strange but terrible pandemic. Saramago was awarded a Nobel prize, especially due to this specific book, but what makes it so special is the way he manages to portray not only the horrors the characters endure, but also the anxiety and fear caused by the fact that the condition has no apparent explanation. Somehow it shocked me, but I kind of left these experiences to the fictional world. However, it has happened in real life, not as the pandemic Saramago imagined, but in cases of sudden blindness.
When I came about the book we’re going to talk about, I remembered Saramago's novel. However, all those descriptions I attributed to fiction became more gruesome once they were translated to an actual case. This book is called Patient H69 and was written by Vanessa Porter, a former film producer who, out of the blue, woke up with her body paralyzed and unable to see anything. The book is divided into two, being the first part some sort of diary or record of what she experienced every day since she woke up in this hell, the two weeks she spent at the hospital, and the five months she spent at home working so hard to recover.
Unlike the characters from Saramago’s novel, who can only see a bright white light, she explains in detail the darkness she was suddenly dragged into, as well as the horror of listening and perceiving all the movement of the hospital without actually seeing what was going on. Besides being blind, she wasn't able to move, and felt just like a bulk in a bed, trying to sense anything on her limbs and body. What the hell happened to her, and why has no one found an explanation for it?
As the days went by, she started feeling some sort of numbness. Although she hasn't recovered her mobility or all her senses, at least that's something to start working on. This made her hope that things could go back to normal. As we read her story, we become that bulk in the bed, that patient H69. We get frustrated and scared as her when the doctors don’t give an answer or when they don't seem to care enough about their patient. At some point, she says she's seeing shapes, not as clear, but more like a change of lights. However, the doctors just say she's blind and she's not seeing anything. Passages like this one make us want to grab whatever we have near us and throw it to theIr face for not listening or even understanding how even this slight change in her condition could be an opportunity to find a solution.
We work hand in hand with her, finding alternatives not only to recover her sight but to live without giving up the idea of thinking in terms of actual images. She asks people to wear bright clothes when they’re with her, or paint her nails with different colors to make tests. Porter then becomes so bossy and demands everybody to describe the room and everything on it to create mental images so at least through her mind, she can know where she is and in a way see what’s happening. All in all, we become as vulnerable as she is.
The second part of the book becomes a sort of detective story in which she starts investigating and taking her signs as clues to determine what happened to her. But more than solving the mystery of her sudden condition, it’s also a great exploration of the brain and its mysteries. She talks about the synesthetic moments she experienced and the science behind them. We get to know that she was affected by Neuromyelitis Optica Spectrum Disorder (NMOSD), a very rare condition that results in blindness and paralysis, and just as we get answers, we learn with her how to adapt to a new life where, despite being different, hope isn't lost.
What would you do if something like this were to happen to you? Would you just wait to see what happens next or fight the impossible to find an answer and recover?
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Photographs by @kavanthekid