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.
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.”