His world went dark days after he turned nine
WHEN Benjamin James Spencer was nine years old, his world went black.
‘It was September 18, 1992, a week after my birthday,’ he said. ‘I was at school leaving a class and in the time it took me to walk 50ft everything disappeared.
‘At first it started to go foggy and then a few paces later it was just dark.
‘I panicked and started screaming and kind of went into shock. Everything after that is pretty vague.’
In the coming days specialists at a hospital near his home in Texas broke the news that he would never see again.
‘I was told this was going to be my future. I was classed as lacking 100 per cent light perception. I was blind,’ he said.
Mr Spencer, now 35, had paediatric glaucoma, a rare condition caused by a defect in the eye’s drainage system.
It had been incurable but scientists have now managed to bypass the broken link by sending images directly to the visual cortex, the part of the brain responsible for sight.
Mr Spencer lives in the city of Pearland, near Houston, with his wife Jeanette, 42, and daughters Abigail, 15, Melissa, 13, and Jane, ten. In April 2018, he became one of just six people to have a 60-electrode panel implanted in the back of his brain.
Surgeons at Baylor Medical College in Houston spent two hours cutting a window in his skull, placing the electrode array on the surface of the brain, and stitching it up again. They then spent six months ‘mapping’ his visual field.
This involved sending computer signals to the stimulation panel in his head to synchronise his brain to the real world – in effect teaching his visual cortex to process images again.
Eventually, in October, the device was wirelessly connected to a tiny video camera, mounted in a pair of glasses, and switched on. He saw his wife and three children for the very first time.
‘It was an incredible moment,’ he told the Daily Mail. ‘It was very humbling.’
Describing catching a glimpse of the sun through the window, he said: ‘Such a tiny thing is normal for people who have vision. But I had not seen the sun since I was nine years old. I had felt its heat, but actually seeing it was incredible. After 25 and a half years of living in the dark, it is awe inspiring to see so much beauty.’
In January, after months of hospital testing, he was allowed to take the device home. The terms of the clinical trial means he can only switch it on for three hours a day, but he makes the most of it. ‘I usually use it for 45 minutes at a time and space it out,’ he said. ‘If I want to go to the store or if one of my kids has a performance.
‘It is not perfect vision – it is like grainy 1980s surveillance video footage,’ he said.
‘I can see silhouettes, I can see light and shade, I can guess at colours. It may not be full vision yet, but it’s something.
‘I can go to the store, I can walk without my cane, I can sort my dark laundry from the whites, I can see a crack in the sidewalk coming up. I could see a sign sticking out – but I couldn’t read what it said.’
Even when completely blind, Mr Spencer learnt to thrive independently.
He finished school, went to college and earned a masters in business, focusing on international trade. He worked for a few years in import-export and then set up his own tax business.
‘I was determined to be an independent person,’ he said. ‘There is always a way around whatever the world throws at you.
‘Luckily I had people around me who said you can allow this to define you, or you can define life. But that being said, everything was a stepping stone. I learned that life was about adaptation.’