Terror of a mother who went blind overnight
PATIENT H69: THE STORY OF MY SECOND SIGHT by Vanessa Potter (Bloomsbury £16.99)
On the morning of her daughter’s fifth birthday, 40- year- old Vanessa Potter woke with the gut- clenching feeling that something had gone very wrong with her body.
She opened her eyes to a world that appeared 70 per cent darker, as though she were wearing thick sunglasses.
Battling fear and disorientation, Potter made it downstairs in her South-London home. But as she splashed milk on to her two-year-old son’s cereal, she noticed her left-middle fingertip had gone numb.
‘Please,’ she begged the receptionist when her husband dropped her off at A&e. ‘I’m losing my sight!’
Over the next few hours all colour drained from Potter’s sight. As a tV producer, she made her living from the visual world. ‘Colour is my job!’ she told baffled medics as they flipped through increasingly murky eye charts.
the numbness crept slyly into all of her fingers. By that night her toes had ‘fused into frozen lumps’ and her legs began shaking violently. She had been fit enough for three Zumba classes the week before, but could barely lift her thighs now.
By the next morning 90 per cent of her sight had gone. A nurse whose face was now only a grey fog took her hand and said: ‘You must pray. God knows best. What will be will be.’
As Potter’s condition deteriorated, the engines of the nhS sped up. there was a volley of tests and a parade of consultants — the most senior of whom told her that he didn’t ‘think’ her situation was life threatening.
two weeks later, it was confirmed she had suffered an episode of a very rare autoimmune neurological condition called nMO (neuromyelitis optica), or Devic’s syndrome.
In europe, there are around one case of nMO for every 100,000 people. It can strike at any age — and is more common in women and people of Asian and African descent. Most will have recurring episodes.
By the time Potter received her diagnosis, her vision was starting to return. In this extraordinary memoir she writes that her doctor had emerged from the gloom to become a silhouette who gave her the wonderful news: ‘You do not have permanent damage, and you have a high chance of a full recovery.’ What he didn’t tell her
was how weird and painful the return to ‘normal’ life would be.
potter had to relearn how to interpret the senses most of us take for granted. It was an exhausting and unpredictable effort.
her friends and family were incredibly inventive and patient. they rubbed different textures ( from cotton wool to kitchen scourers) on to her numbed skin and painted her fingernails a full spectrum of colours in an attempt to brighten her black-and-white world. She could ‘see’ colour when people told her it was there, but not reliably otherwise.
there were unsettling hallucinations. A recycling bin suddenly fizzed like a sparkler, bright light dancing all around. pictures of the sun appeared to rotate and she had a hideous vision of spiders crawling across her daughter’s skin. though her children surprised her with their tenderness, family members irritated her by making light of her trauma, and friends upset her by sharing horror stories about other people with frightening diseases.
As well as learning how to walk and see, potter had to learn to tell wellmeaning visitors when to shut up.
Almost five years after her episode, potter is doing remarkably well, but although her vision is improved enough for her to paint, she is still looking at the world as though ‘through a dirty windscreen’. Stairs ‘without obvious edges, textured cobbles in parks and endless grey tarmac’ can still catch her out.
‘ I have a new respect for my environment,’ she concludes, ‘and approach it with caution. You might say I tread carefully.’