Plunged into dark­ness

A rare dis­ease robbed TV pro­ducer Vanessa Pot­ter of her sight al­most overnight. She turned her strug­gle into a book, writes Laura Baker.

The Press - Your Weekend (The Press) - - Feature -

A“deep, crip­pling, gut-wrench­ing fear” kicked in only weeks af­ter Vanessa Pot­ter had gone blind, fac­ing a rare di­ag­no­sis and long re­cov­ery. The fully sighted 40-year-old kept rel­a­tively calm dur­ing the three days her vi­sion eroded away into dark­ness. Her mea­sured re­sponse was par­tially for the sake of her two young chil­dren and her own san­ity.

A flu-like ill­ness, that had plagued her for a fort­night, was fi­nally be­gin­ning to lift when the UK broad­cast pro­ducer awoke on the morn­ing of her daugh­ter’s fifth birth­day to a world that ap­peared darker and fuzzy.

Every­thing was vis­i­bly foggy like “TV static”, says Pot­ter, and it felt as though she was wear­ing dark sun­glasses, ex­cept of course she was not. At that stage, she es­ti­mated she’d lost around 70 per cent of her sight.

Si­mul­ta­ne­ously, a “sin­is­ter” numb­ness crept through her body. Start­ing in her left-mid­dle fin­ger tip, silently mov­ing up ev­ery limb.

“My eyes aren’t right – I feel weird,” she stut­tered to the GP’S re­cep­tion­ist, as she booked an ur­gent ap­point­ment.

To cope with the en­clos­ing dark­ness, she swung into pro­ducer mode. “Of course I was panic-stricken, but dur­ing those first three days I was fo­cused on get­ting or­gan­ised, get­ting fixed and get­ting over it – the hard-hit­ting fear came later.”

In A&E, a per­plexed doc­tor or­dered an ECG and a chest X-ray, be­fore she was sent her home with anti-nau­sea tablets.

It took a sec­ond visit to A&E and a steely de­ter­mi­na­tion to be seen by a oph­thal­mol­o­gist that earned her a Na­tional Health Ser­vice (NHS) bed.

As the con­di­tion wors­ened, the numb­ness omi­nously moved into her spine. She felt “plas­tic coated,” her legs use­less like “frozen lumps”.

“Not know­ing how far it would go and how deep it would pen­e­trate was quite scary.

“I’m not go­ing blind, I won’t go blind,” she told an el­derly woman in the hos­pi­tal ward, de­ter­mined to grip onto the sliver of vi­sion that re­mained.

“Of course my vi­sion was pretty use­less, but there was some­thing there. I could just ob­serve move­ment and changes in light.”

Bound to the hos­pi­tal bed, she felt over­whelm­ingly that it was cru­cial to doc­u­ment the or­deal. Her hus­band, Ed, acted as her scribe, jot­ting down ev­ery de­tail.

Five years later, the di­ary has acted as the cor­ner­stone to her book, Pa­tient H69.

“Weirdly” she didn’t regis­ter the mo­ment her world went to­tally black. “My brain hadn’t caught up on the enor­mity of what had ac­tu­ally hap­pened.”

A di­ag­no­sis came two weeks later, by which time the black abyss had re­ceded and translu­cent grey fig­ures had be­gun to float into view.

Doc­tors said she’d suf­fered an ex­tremely rare au­toim­mune neu­ro­log­i­cal con­di­tion called neu­romyeli­tis op­tica spec­trum dis­or­der, or NMOSD.

“The prob­lem wasn’t any­thing to do with my eyes,” but a cou­ple of mil­lime­tres down in the op­tic nerve in­stead. The au­toim­mune dis­ease at­tacked the cra­nial nerve caus­ing in­flam­ma­tion, and long-term dam­age. It also af­fected her spinal cord.

NMOSD more of­ten than not re­oc­curs in pa­tients and is more com­mon in women than men. The rar­ity of the di­ag­no­sis earned her a rep­u­ta­tion as the “one-in-a-mil­lion” pa­tient, leav­ing doc­tors stumped.

“The men­tal an­guish of the un­known was by far the most fright­en­ing as­pect, it rav­aged my whole body.”

A visit from vis­ual im­pair­ment char­ity The Par­tially Sighted So­ci­ety to size her up for a white cane only for­ti­fied her mantra: “Full re­cov­ery, no per­ma­nent dam­age.”

At that stage, she says, “no­body was talk­ing about re­ha­bil­i­ta­tion,” so she ini­ti­ated her own re­cov­ery, us­ing sen­sory stim­u­la­tion to re­ac­ti­vate her brain. Hope­ful fam­ily and friends rubbed all man­ner of tex­tured ob­jects over her “rub­ber” feet, from cot­ton­wool balls to a nail­brush, caus­ing alien-like sen­sa­tions to shoot up her legs.

To re­mind her brain of colour, her nails were painted “elec­tric blue, white and very loud pink”. Later into her re­cov­ery she took up paint­ing to fur­ther re­train her vis­ual sys­tem to recog­nise colour.

“You don’t have per­ma­nent dam­age,” de­clared a spe­cial­ist as she was dis­charged af­ter a lit­tle more than a fort­night in hos­pi­tal.

Left to the mam­moth task of re­cov­er­ing at home, a bot­tle of Neu­tro­gena body wash be­came her best friend. It served as crude test to mea­sure her re­turn­ing sight.

Her morn­ing rit­ual was to test her sight, star­ing at the bot­tle with burn­ing in­ten­sity, as she willed the blurred smudge of a la­bel on the bot­tle to sharpen.

Even­tu­ally a sin­gle let­ter emerged from the foggy shapes and she felt a rush of ex­cite­ment.

“Ev­ery small change was good and there­fore we la­belled the whole day as a good day.

“We were tri­umphant over the small­est achieve­ments, be­cause col­lec­tively that gets you some­where.”

Af­ter six months how­ever, progress slowed, prompt­ing a re­fer­ral to a spe­cial­ist NMO team in Ox­ford, who dealt a heart­break­ing blow – she would not gain any fur­ther sight, that was it.

To­day Pot­ter’s vi­sion is like look­ing through a dusty wind­shield. She lives with pro­found colour loss and some­thing called vis­ual snow. It makes ori­ent­ing her­self and recog­nis­ing peo­ple’s faces dif­fi­cult.

But de­spite her vis­ual im­pair­ment, her fear is gone. “I’m not nearly as scared of the world as I was. I’ve re­alised I don’t have to be fright­ened. How I re­spond is my choice.”

An au­toim­mune dis­ease at­tacked Vanessa Pot­ter’s vi­sion. Over three days, every­thing went black and her body be­came numb.

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