In­sights into pro­found loss

The Weekend Australian - Review - - Books - Danielle Clode


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

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