Medics thrive on feeling useful: testing abnormalities, forming a differential diagnosis, providing treatment and tracking improvement. But for many conditions, the story is one of uncertainty, setback and management rather than cure. While clinicians busy themselves with visible and measurable signs of disease, the patient’s hopes, despair and wavering sense of self may go untended, leaving them with the feeling that they are descending into darkness alone.
This is particularly true when the patient is going blind. Andrew Leland’s memoir about this process articulates beautifully, with energy and honesty, how being held between seeing and blindness has changed him and his views on our ableist world. He is a journalist and podcaster who has written for the New Yorker and is now a contributing editor to American magazine the Believer, and his sensitivity to storytelling, history and literature is everywhere evident when reporting on his own eyesight. As a teenager he started to realise he couldn’t see properly at night, compounded by experimentation with cannabis and psychedelics. The tunnel vision worsened. A diagnosis of retinitis pigmentosa (RP) was finally made. It is a hereditary condition that slowly kills the rod cells of the retina, which are responsible for seeing peripheral objects, particularly in low light. At some time in middle age the eyes will fail completely. Ophthalmologists, who have “a low sense of the lived experience of the visual impairments they diagnose”, review Leland’s “bad peepers” every couple of years. All the same, there’s no actual treatment, only the tantalising promise one day of gene therapy and CRISPR technology. The author now has 6% of his visual field left, which renders him legally blind but still able to read print.
