When people say they fear going blind, I often wonder what that fear looks like. because – while blindness is not “comfortable” for me – I’ve come to a place of peace with my own vision, limited as it is. Memoirs of progressive vision loss are many, but there are very few memoirs of unexplained and sudden vision loss and the crisis that it creates.
Enter Vanessa Potter, otherwise known as Patient H69.
Imagine how it would feel to one day wake up and find your vision descending swiftly into darkness. Your fingertips are turning numb, and, as the world closes in around you, you realise there is nothing you can do to stop it. This is what happened to Vanessa Potter.
In the space of 72 hours, Vanessa went from juggling a high-flying career as a producer and caring for her two small children to being completely blind, unable to walk, and with her sense of touch completely gone.
Over the course of the next six months, Vanessa slowly began to recover. Opening her eyes onto a black-and-white world with mutating shapes and colours that crackled and fizzled, she encountered a visual landscape that was completely unrecognisable. As colour reappeared, Vanessa experienced a range of bizarre phenomena as her confused brain tried to make sense of the world around her, and she found herself touching and talking to inanimate objects in order to stimulate her vision – all part of her brain’s mechanism for coping with the trauma of sensory loss.
Going blind led Vanessa to turn science sleuth, reinventing herself as Patient H69 to uncover the reality behind her unique condition. With the help of a team of psychologists and neuroscientists, we follow Vanessa’s story as she learns the science of herself, transforming her terrifying experience into a positive, inspirational and scientifically fascinating endeavour.
Vanessa, Patient H69
The first part of this book is by far stronger the second. it chronicles Vanessa’s career and family, and the sudden illness that took over her body over a very short period of time. Vanessa describes in poignant detail what it felt like to be a patient, at the whims of medical staff who frequently viewed her as a patient, not a person. She faces down doctors and students who treat her condition as an anomaly, but who couldn’t care less about the little successes she uses to prove to herself that her condition is improving. From finding pleasure in the little things (like an independent shower), to facing down the anger about not being able to see and move the way she’s accustomed to, to the little victories of being able to instinctively know what she’s seeing, we’re there through it all with Vanessa. It’s a wild ride.
Ableism on Display
There were portions of this book that made me take sharp breaths with their poignancy. At one point, Vanessa is brought in to speak to medical students, and one of the professors made it abundantly clear that Vanessa’s time was valuable, full-stop, and told one of the students to stop disrespecting her by prioritizing the donuts at the back of the room. During her time in hospital, Vanessa was subjected to so many medical professionals, almost all of whom treated her changing vision as an inconvenience – it wasn’t perfect, so it wasn’t worth their time to discover.
Even Vanessa herself made a comment about a wheelchair being a “demeaning” way to travel, being at the whim of someone else all the time. There’s talk of a back-to-normal goal date, as though doing all the right physical and mental things will make Vanessa complete and whole again.
And yet, Vanessa seems to become much more aware of societal barriers around her, such as being unable to fit into the hospital gift shop with her wheelchair.
This is a fascinating look at both medical and social models of disability, and while I know many of these ableist thoughts were expressed in moments of great fear, pain and conclusion, this reader couldn’t help but think about friends who use wheelchairs, or who spend years hoping for a cure without embracing the lives they have now.
The second part of the book – the neuroscience behind Vanessa’s condition and recovery – was interesting, but definitely went over my head in places. I couldn’t really tell one doctor from the next, what their role was, and how they could help explain the brain’s connection to interpreting visual information or motor function. If you’re interested in neuroscience, it’s written in an accessible style; feel free to fill in the gaps?
The memoir is much stronger than the scientific research, but overall I’m glad I spent time with this book. It’s clear that Vanessa’s experience of vision loss hasn’t left her – she still struggles to interpret some visual information, and finds it hard to explain to people just what she can see. it gave me a deeper understanding of friends with partial vision, and how they struggle to fit between the worlds of sight and blindness. As a memoir, it’s poignant, gripping, and compelling; as a scientific exploration it is less so. In either case, though, it’s a worthwhile read, particularly if you’re interested in the different ways of looking at disability.