Insights into profound loss
LPEOPLE ‘APPEAR’ WHEN THEY SPEAK AND DISAPPEAR WHEN SILENT
ost in the dark. Blindness is one of our greatest fears. We rely on our sight to navigate, not only our physical environment but also our social and emotional world. Loss of vision has profound effects on all aspects of life and relationships.
As such, these three books are not just about blindness, or adapting to the physical constraints of blindness, but more specifically about adapting emotionally.
John Hull went blind from retinal detachment at the age of 45. He was told he would take years to adapt. Notes on Blindness is the story of those difficult years, after he had adapted physically but not emotionally. By comparison, Nick Gleeson, who suffered retinal detachment at age seven, seems to have adapted to blindness with the resilient elasticity of childhood. The Many Ways of Seeing documents the importance of his family and friends in that process.
In Patient H69, Vanessa Potter never accepts her loss of vision as permanent. Her sudden experience of blindness is caused by neuromyelitis optica, an inflammation of the optic nerve and spinal cord, at the age of 40. Her book is infused with a determination to recover, which, in part, she does.
Each author approaches their journey with blindness in a different way. Hull, who was born in Victoria but lived in Britain from the 1960s, applies the analytical and intellectual skills of an academic theologian to his experience. His book is a finely wrought depiction of the landscape of blindness, of a journey in which he “began to sink into the deep ocean and finally learned how to touch rock on the far side of despair”. He subjects his own emotional and spiritual response to the same rigorous level of scrutiny that he applies to his sensory experiences and, no doubt, his work.
The result is a crisp and illuminating book, infused with the stoic melancholy that Hull struggles to overcome. Hull died in hospital after a fall at his home in Birmingham in 2015, aged 80. He was survived by his wife and five children.
Potter, a British advertising producer, addresses her illness through a more emotional and social lens. She documents her immediate response with almost frenetic intensity, recording her experiences on a dictaphone, possibly to stay in touch with a world from which she has been shockingly isolated.
In the second half of the book, she explores the biology behind her illness and her symptoms. Like Hull, she seeks to reconcile herself to her condition through knowledge and analysis. While this process is largely internal and personal to Hull, for Potter it is more outgoing and social, presented largely as dialogue with medical and scientific experts. The result is part memoir and part science journalism.
Gleeson — the Sydney-based athlete, adventurer and accessibility advocate — provides a physical and experiential story. Many aspects of his adaptation to blindness are probably amalgamated into the broader experience of childhood. The trauma associated with his loss of sight, compounded by the deaths of family members, is packaged into a broader narrative of happy memories and a lifetime of considerable achievement. Gleeson does not dwell on climbing mountains or running marathons. His greatest achievements are his connections with friends and places, his wife and children, and his family and memories.
While Potter and Hull’s books are structured within a dated chronology, Gleeson’s recollec- tions are fragmented, structured within a discontinuous narrative with contributions from Peter Bishop and occasionally Caroline van der Pol. The result is a generous and moving story that is somewhat disconcerting to navigate. Perhaps this is deliberate: encouraging the reader to let go of their requirement to see the path ahead and to experience each moment in the book, under the guiding hands of the authors, as it comes and goes.
This loss of the ability to see ahead, the need to live in the moment, raises all sorts of unexpected complications, from socialising to enjoying food. Some level of dependence on others is inevitable. Potter sometimes suffers from too much assistance and, on other occasions, not enough. Hull records, in painful detail, insistent, well-meaning but unhelpful efforts to assist, and his own struggle to encourage the kind of help that enables rather than disables.
“A disabled adult man loses part manhood, part of his adulthood, part humanity,” he observes.
Soliciting help though is not easy when people are no longer stretched out in space before of of his his you. They suddenly “appear” when they speak and disappear when they are silent. Hull acquires new skills in engaging people. Potter, too, suffers the frustration of not being able to prove the subtle changes she experiences in her own visual perception — as if others are better at seeing through her own eyes and at knowing what is best for her.
Gleeson, with a cheery upbeat optimism that I’m sure provides its own rewards for friends and acquaintances, expresses few concerns about accepting the assistance of others. He accepts his blindness as an inescapable reality but directs his determination into achieving whatever goals he sets. Whether he is climbing mountains, crossing deserts, driving a car or diving in oceans, he has a determination to conquer his blindness. Here he is on taking a mark in Australian football: “At such moments, blindness begins to be conquered — overwhelmed by sheer young-boy willpower.”
Hull, on the other hand, had great difficulty accepting his blindness, despite skilfully adapting his academic research and teaching life, including giving lectures without notes. If I were to accept this thing, if I were to acquiesce, then I would die. It would be as if my ability to fight back, my will to resist were broken. On the other hand, not to acquiesce, not to accept, seems futile. What I am refusing to accept is a fact. This then is the dilemma. I am in the presence of an unacceptable reality.
For Hull, reconciliation with this unacceptable reality is a spiritual journey, unobtrusively shaped by his Christian faith.
There are strange and unexpected features of blindness. Both Potter and Hull lose their appreciation for food. Who would have thought the visual anticipation of taste was so important? Gleeson suffers no such impairment. His descriptions are rich with the taste and smell of food. I suspect loss of appetite simply was not an option for an active growing boy.
As Potter notes in her book, these stories are not about neuroplasticity but about normal brain function that we don’t normally notice. It is not, after all, just our eyes that see images but our brains that construct a meaningful pattern from the messages they receive. They don’t always get it right, even without damage.
Potter recalls seeing a horrifying pool of blood on the path as a teenager, only to realise it was just the red colour of the setting sun. Such normal “tricks of the light” later result in images of fizzing blue rubbish bins as her recovering brain attempts to reconnect mental and physical reality along alternative pathways.
All three authors become skilled in using their complex mental maps to find their way over new terrain, extending their sensory perception with white canes, guide dogs or senses they weren’t aware of before. Hull describes his acoustic landscape, illuminated by the rain.
“Rain has a way of bringing out the contours of everything; it throws a blanket over previously invisible things; instead of an intermittent and thus fragmented world, the steadily falling rain creates a continuity of acoustic experience.”
Just as significant as the loss of outer vision is the loss of inner vision. How do you remember someone you cannot visualise?
“My greatest challenge with blindness is the impossibility of visual memory. I will often ask my closest friends what they look like because I am scared that, if they die, I will not remember them,” Gleeson says.
Both Potter and Hull are tormented by the fear of losing the visual memory of their children and partners. Hull dreams of losing the child born before he went blind, although not the children born after. He deeply mourns the loss of being the kind of parent he was before. Gleeson, whose wife is also blind, simply takes fatherhood in his stride. Yet all three describe intensely coloured visual dreams, suggesting that even with the lack of visual input the brain is determined to regain its sight.
Despite such sensory deprivation, all three suffer from excess sensory stimulation. Gleeson surprisingly enjoys diving underwater and the loss of external sound. Both Potter and Hull describe the desperate need to retreat into a quiet space, Hull to his office and work, while Potter uses meditation to retreat to a fantasy beach. In extremes, they even fall asleep. The sensation of being isolated in a crowd, trapped within their own body seems unbearable at times, leading to depression and melancholy.
The end goal of Hull’s book is reconciliation with his condition, Potter’s is recovery, and Gleeson’s, I think, is one of recollection, but all three are about maintaining connections in the face of the profound fear of being lost, and of the joys of tenaciously hanging on. is an author and critic.
Author Nick Gleeson and friend