Neuromyelitis Optica, or NMO, is a mystery disease. Although the cause is unknown, its pathogenesis has progressively become clearer. A florid autoimmune inflammatory cascade leads to rapid demyelination and axonal injury targeting the optic nerve and multiple segments of the spinal cord. This is the calamity that rendered Vanessa Potter, patient H69, legally blind and partially paralyzed on short notice in the Fall of 2012.
We don’t learn until the second half of her new book that the pseudonym Patient H69, through which she blogged in 2013, derives simply from the first few digits of her NHS hospital number. Nor do we discover until the end of the book that, as of 2017, Vanessa’s motor and visual abilities have returned to normal. Or have they? The bulk of this riveting book builds momentum toward self-discovery of the seemingly effortless process that we call vision, and what happens when its fragments must be reassembled from scratch to build a new normal.
During the early days of having her vision tested, Vanessa knew she could see familiar faces but had trouble resolving detail. She whispered to herself as an infant would if infants could talk: “I can see. I saw Judy Finnegan this morning. I just can’t see your stupid chart.” Her optic nerves began to transmit visual input more faithfully, enabling Vanessa to discern lines and edges. These are among the rudimentary building blocks of sight, but an impoverished version of our rich visual world. Soon patient H69 would resolve letters on an eye chart, but more in the form of a captcha image whose identity plagued her like it would a bot. Explaining what she couldn’t see was much more difficult than articulating what she could see.
As her visual sense returns, Vanessa finds herself easily overwhelmed. More than sensory overload, taking in too much through her eyes erupts into an electric storm in her head. Lights can flash and explode insider her mind. As these interruptions occur less frequently, the jigsaw puzzle that is vision assembles itself with more certainty. Yet a VEP (Visual Evoked Potential) would still show that her optic nerves were taking their time transmitting visual information to distribution centers in the brain. Fuzziness and mistiness gradually abate, but the look of translucent protective wrapping around objects and images never fully peels away.
Eventually Vanessa can read down to the small letters on the eye chart again yet, as she writes, she doesn’t have the subtleties of sight, the humanness of seeing. Color creeps back in, but is still desaturated as her optic nerves struggles to regain their footing. This is when Vanessa begins her vision quest in earnest, following her storyteller’s instinct to understand and document her own personal drama. She envisions how she might invite the public on a journey to the center of her mind, and relive her visual odyssey. This leads her into the world of neuroscience, collaborating on an exhibition that would be titled the Beach EEG Project.
Vanessa’s forays into visual neuroscience take her to phenomena such as blindsight and synesthesia. She travels over roads previously paved by Richard Gregory in his classic Eye and Brain noting that the eyes are merely receptacles for sight, whereas vision emerges further upstream. Where this book shines, however, is in the first person account of the struggle in relearning to see. The restoration of contrast, and color, and depth. The coherence of qualia that serve as essential attributes of vision enabling sight to occur in all its meaning and glory.
I was introduced to Patient H69 via email by Sue Barry whose book, Fixing My Gaze, is a terrific resource on vision that Vanessa references. It is reasonable to characterize the odyssey as a series of mini-experiements in vision, and Vanessa is the first to acknowledge that more work needs to be done. I was excited to see Patient H69 prominently displayed in the front of Barnes & Noble this week, and equally excited to think of what lies ahead for Vanessa as she dips her toe into neuro-rehabilitative optometry. That story will have to await a sequel.