Running Blind

Chapter 1 – Fade to black

In my mind’s eye I can still see everything. I remember clearly defined images, spectrums of colour, light and shade, but most of all I remember the face of a frightened 15-year-old staring back at me in the mirror. This is the last image I have of myself, stored away as my sight disintegrated. Like most teenagers I was scared of what lay ahead. Unlike most teenagers I had reason to be scared. I was losing my sight. Five years later, at the age of 20, I was blind.

Still, I consider myself fortunate because I have so many vivid memories from those first 20 years of my life. I can picture my sister’s blonde hair and her green eyes, and my dad sitting in his armchair smoking his pipe. I remember the colours of family holidays: the brown and orange canvas of the family tent that screamed the 1970s, and the beige Austin 1100 that took the Matthews brigade to the seaside. I can recall the waves crashing against the rocks and the incoming tide gradually changing the dry, golden sand into a damp, brown mass. I can see white marshmallow clouds against a mid-blue sky, and I remember the colours of the houses and the hotels on the Monopoly board, a game we played for hours on end as the rain made a mockery of another English summer. I can still see my grey school uniform and the red, yellow and green school crest on the breast pocket, and for the most part I remember living a normal, happy childhood.

I got into lots of adventures with my mates, like most young boys do, and I was your typical gormless, gawky teenager. But try as I might to fit in, my failing sight made me different, and it was something I resented at the time. I just wanted to be normal. It is ironic really, because since I lost my sight I’ve rebelled against the norms of what’s expected when you’re blind. If someone says ‘that’s not something a blind man can do,’ then I set out to prove them wrong.

I made it my goal to be the fastest blind man in the world, and I’ve achieved more than I ever dreamed of on the track. I’ve won eight gold medals at seven Paralympic Games, set 22 world records, and been awarded an MBE for Services to Sport for the Disabled. Away from running I’ve driven a race car around Brands Hatch at 80 miles per hour. I’ve cycled across the UK and Europe. I’ve played golf and football. I’ve skied and scuba dived. And in 2006, at the age of 45, I left behind my family and friends in England and moved to the other side of the world to New Zealand to marry the woman I love and start a family.

So what’s next? Well, I want to run a 250 km ultra-marathon through the Sahara Desert, and I have set my sights on completing a 650 km ski/run to the North Pole in temperatures which reach minus 50 degrees. I truly believe that anything is possible if you set your mind to it, and we can all strive to be extraordinary. But as a child and as a young man growing up, all I wanted to be was ordinary. All I wanted was to be the same shade of vanilla as the rest and not stand out from the crowd.

I was born in May 1961 in the single bedroom at the rear of our family home in Strood, near Rochester, in Kent. My father, Aubrey, and my mother, Patricia, had bought one of the first houses in a new development on Poplar Road. Strood was much more affordable than London yet still only 35 miles (55 km) from the city. I was the second of three children, the middle child between my older sister, Angela, and my baby sister, Susan. You could say I was the rose between two thorns.

My dad, Aubrey Thomas Matthews, was also one of three children, but was the only one of his siblings to be born with very little useful vision due to the condition now called retinitis pigmentosa (RP). He was the third generation in the family to lose his sight as a result of a degenerative eye condition, after his mother and her father. It was too coincidental for it not to be considered hereditary. He was just three years old when he was taken away from his parents and sent to the Sunshine Home for Blind Babies. When he was seven he was transferred to another boarding school for blind children, Lyndon Lodge in North London. Conditions were tough and the children slept in 12-bed dormitories, but Dad had one advantage over many of the other kids. He’d learned to read Braille from a very young age, so when the lights went out he could read in the dark under the bed covers.

Dad learned quickly how to stand on his own two feet and stick up for himself. I’m certain he underplayed it, but I can’t help thinking how hard it must have been for him to be separated from his parents and siblings. I am so grateful that it was no longer standard practice for blind children to be sent to boarding school by the time I started to lose my sight as a young boy. At least attitudes to children with poor eyesight had improved from when my father was a baby.

With the advent of the Second World War, Dad’s school was evacuated to Dymchurch on the Kent coast, which is where this story could have ended as this was a direct route for German bombers on their way to attack London. When he was 16, Dad and a friend were fired at by a German fighter plane returning home. They probably saved their skins by diving into a roadside ditch. This is the closest he would get to the action, as his blindness made him ineligible to be drafted into the forces. Still, it was a scary time for him, and when we were youngsters Dad regaled us with stories about the nights he spent sheltering in Tube stations in London during the air raids. He described the experience as a mixture of dread tinged with nervous excitement and anticipation, as he sat and waited for the bombs to whistle out of the sky, hoping and praying they exploded somewhere in the distance.

Mum has also talked about her experiences during the war; of being bombed by the Germans in her home town of Scarborough, East Yorkshire. Her side of the family were no strangers to war. Her grandfather, Patrick Crow, was from Clones, Ireland, and he served in the Scots Guards, fighting in the Boer War; he was one of the founder members of the Irish Guards in 1900. Mum’s father (my grandpa) Jon Crow served in the Black Watch in the trenches in the First World War. He suffered the horrors of hand-to-hand fighting and being sent ‘over the top’; after one occasion in 1917, he was found two days later, wandering around no-man’s land, suffering the effects of mustard gas, and was demobilised. He was just 18 years old.

My parents first met after the war when they worked in the same office in the Treasury in London. Mum told me that she noticed my dad immediately, as he was a tall, dark and handsome fellow. She didn’t hesitate when he asked her out for a drink, and things progressed quickly from there. Dad’s blindness was never a problem for Mum, although it took her parents some time to adjust to their daughter’s choice of partner. They obviously learned to adjust, because Mum and Dad were married on 21 May 1955.

By this time Dad was working as a shorthand typist for the Ministry of Defence at Chatham Dockyard, and he commuted from Strood every day by bus. He had to walk 400 m from the bus stop to his office, and he made the journey using a symbol cane, a short, white folding cane to indicate the carrier was blind. His cane was just over a metre long, and Dad used it to follow walls or grass verges. His cane worked reasonably well, apart from the occasional collision with a lamp post.

Lamp posts are the bane of the blind and those with poor or fading sight, as I was to discover as a teenager. The council always seems to place them a foot or so from the edge of the pavement to deliberately catch out unsuspecting ‘blindies’. Dad often came home from work with an assortment of cuts and bruises, and it was a huge relief for him and for us when he organised a lift to work with a colleague and gave up his daily battle with lamp posts and late buses. Why Dad was only taught to use the symbol cane—which was clearly inadequate for any totally blind person navigating journeys alone—we’ll never know. He should have been given a long cane, or better still offered a guide dog. They were different times, I guess.

My older sister, Ange, was born in 1959 and then our baby sister, Sue, in 1964. While we were aware of our father’s battle with blindness, Ange, Sue and I never considered him anything but normal. He was just someone who happened to be blind, which was fine by us—we loved him for what he was, cuts and bruises and all. While we may not have worried about Dad’s blindness, it must have been a source of concern for him and Mum, particularly when they first decided to have children, given that RP is hereditary. As soon as Ange and I were born, Dad asked the doctors to check our eyes for signs of anything out of the ordinary. Mum says they turned our eyes ‘inside out’ to see if there was any retinal damage. Ange and I screamed our lungs out, but to our parents’ relief the doctors found nothing wrong with our eyesight. When Sue was born, Mum refused to put her newborn daughter through the same ordeal.

Although given the all-clear when I was born, by the time I was two Mum had begun to notice that my movements around the house were less confident and precise in poor light than they should have been. She took me to see our local GP, Dr Pritchard, who saw no reason for concern at that stage. By the time I was eight, it appeared my sight hadn’t improved, nor for that matter noticeably worsened, and Dr Pritchard referred me to Maidstone Eye Hospital for tests. The specialist at the eye hospital confirmed my sight wasn’t perfect, but he predicted it would improve and I would have normal sight by the time I was 13 years old. I guess he didn’t really know what he was dealing with because we would soon find out how wrong his initial diagnosis was.

Maidstone is only ten miles (16 km) from Strood, but we needed to catch two buses, and the trip would take an hour on a good day. The journey started out as an exciting adventure, but over several years of travelling there—and later to Moorfields Eye Hospital in London, the leading eye hospital in the UK—the excitement and expectation were replaced by the hope that the pain and discomfort I was to be put through would mean I would have improved vision. Only this outcome would make the whole experience worthwhile.

Once Mum and I arrived at Maidstone Eye Hospital, the doctor would shine his torch into my eyes, which wasn’t too bad until he applied the drops to dilate the pupils. This gave him a much better view of the retina and the back of my eye, but with the pupils enlarged more light was let in. Considering my eyes were already sensitive to bright light, it made it incredibly uncomfortable. Try as I might, it was impossible to keep from screwing them shut, so the doctor would use his thumb to hold my eyelids open, making my eyes water. Next up, the doctor would take a photograph of the back of my eye, which entailed placing the camera right up against my iris. The pressure was severe, and even with the drops my eyes felt numb and sore.

My visits to Maidstone Eye Hospital became more and more frequent, with the ophthalmology department finding my condition extremely fascinating and unusual. I was invited in for ‘guinea pig’ sessions on Saturday mornings when anyone—or so it seemed—with a passing interest could drop in to have a look into my troublesome eyes. Sometimes up to 30 ophthalmologists and their students would be there, shining their little torches into my eyes.

This was tantamount to torture. I was ordered to ‘look up…look down…look left…look right’ without a please or a thank you, and little more than an occasional grunt or a worrying sigh in the way of feedback. Some of them got quite irritated if I complained about how painful it was to keep my eyes open for so long. Most of the eye doctors walked away without even the courtesy of a goodbye, and the first I knew of the changing of the guard was when I heard a different voice telling me to ‘look up’ or ‘look down’. I put up with this in the hope that somehow, some day, they would find what was wrong and fix it.

It took ten years before I was eventually diagnosed with RP, the same condition as Dad’s. It’s hereditary, gets progressively worse with age, and there is currently no cure for it, although there is some promising research into gene therapy being carried out at the moment.

There are approximately one million people in the UK who are registered blind (less than one per cent are totally blind) and approximately 33 per cent of those have some form of RP. People with RP are not born blind; their sight slowly deteriorates until most useful vision has gone, typically during middle age. Night blindness is usually the first symptom, followed by a gradual loss of peripheral vision. This leads to tunnel vision, which means people with RP can often read a sign 20 m away, but fall over a chair under their nose or—like Dad—walk straight into a lamp post.

Most people with RP don’t go totally blind until their 40s or 50s, but the rare strain of RP I inherited meant I went blind much earlier in life. I remember lying in bed as a young boy with the lights off, looking in the direction of the bedside table, willing myself to see it. I used to hold my hand up in front of my face, convincing myself that I could see it—surely that was a shadow, an outline…something…anything? But soon I realised it was just my imagination. I couldn’t see anything in the dark. I knew exactly where the bedside table and my hand were, but the rods, the light-sensitive cells in my retinas, were next to useless.

I couldn’t see in the dark and I was dazzled by bright sunshine, but when the light was somewhere in between I was able to get around confidently enough. I had some peripheral as well as central vision, enabling me to see colours and quite a bit of detail. I could read normal-sized print in a book if the light was good, but ironically I struggled to read large print as I couldn’t see all of each letter at the same time. I could watch our black-and-white television, read a car number plate from 25 m away, and played football fairly well, although it was difficult to focus on the moving ball.

As I got older, scar tissue formed on my retinas, creating ever-increasing gaps in my vision. A very interesting piece of equipment used to test my peripheral vision looked like a big mixing bowl on its edge. I had to put my chin on a rest, look into the ‘bowl’ and focus, one eye at a time, on the lens directly ahead, then press a button each time I saw a pinpoint of light. Later the eye specialist described my sight as ‘like looking through a net curtain at a jigsaw with pieces missing’.

By the time I was 13 I had accepted that my sight was not improving. In fact it was fading relatively quickly, with my central vision seeming to disintegrate faster than the peripheral vision. I found it more difficult and uncomfortable to see in bright light. Like Dad, I started suffering more and more physical injuries as a result of my failing sight, many of them caused by those damned lamp posts.

Walking into a lamp post at high speed results in a curious mixture of sensations. First there is the sickening sound of bone hitting concrete, followed by a jarring jolt as you come to a sudden stop, and a nauseating feeling as though you are falling from a great height. Then there is the pain, which I desperately tried to ignore, figuring that if I acted as if nothing had happened, nobody would even notice that I had walked into a lamp post.

Once, on my way home from school, I learned a valuable lesson: that I needed to concentrate on where I was going at all times and not allow myself to be distracted, however briefly. I was walking along Lilac Road, kicking my football in my bag, and daydreaming of playing for Chelsea one day. It was a dark, dingy evening, but I noticed a bloke on the other side of the road who was walking quite quickly and I decided to race him. I was doing well and had him in my sights until a lamp post leapt into my path from nowhere, and bang! I bounced off it and stumbled backwards before finding my feet. I wondered what the hell had hit me. I was still a mile from home, and the last thing I wanted was the prying eyes of nosy neighbours wondering ‘what happened to young Matthews then?’ I tried to hide my battered face behind my bag and hurried home as fast as I could, never stopping to think that maybe a kid walking home with a bloody face wouldn’t look half as strange as I did carrying my bag in front of my face.

When Ange got home from school she was more horrified than usual at the state of me. I had done a really good job on myself. My right eye was closed for a week, and the bruising was bad enough to keep me off school. I worried about what the other school kids would say when they found out, but they just assumed I’d been in a fight. They were more impressed than anything, and wanted to know how badly I’d hurt the other kid. Naturally I kept quiet about what had really happened.

You’d think I would have learned my lesson, but a few years later I was running to get an ice-cream for my girlfriend. I saw the ice-cream van, but didn’t see the lamp post. This time I chipped a couple of teeth and bruised my knee. I wouldn’t have minded so much if she’d been worth it, but she wasn’t.

My failing sight did nothing to help my shyness and lack of self-confidence. I was reluctant to draw attention to myself, and it took a lot of courage to put my hand up in school and ask a question or volunteer an answer; I didn’t want to feel foolish or look stupid. Whenever I opened my mouth in front of the class, I felt my cheeks burn as the blush spread across my face.

My efforts to blend in weren’t helped by some of my teachers. At the beginning of my first summer term at Rede Court Comprehensive, Mr Shoot, the physical education teacher, told me I wasn’t allowed to do summer sports. I guess he felt my bad eyesight and my resultant clumsiness would make me a major liability when putting the shot, not to mention throwing the javelin. I couldn’t have agreed more, and I was relieved to hear this good news. I wasn’t so happy that Mr Shoot decided to deliver the news to me in front of the whole class. It was as good as advertising the fact that there was something wrong with me, and I remember wishing the ground would open up and swallow me.

My time at Rede Court was difficult because the classes were so big, and the teachers just didn’t have the time to give special attention to a child who was losing his sight. The fact that I couldn’t see a thing that was written on the blackboards didn’t help. It was a traumatic couple of years as I slowly came to the realisation that I wasn’t a normal kid.

Ange noticed how difficult things were for me at school, and told Mum and Dad who decided it was time to move me to a school that would help, rather than hinder, my development. Leaving Rede Court for the Nansen School for the Partially Sighted at the age of 13 was the best thing that could have happened to me, and was one of the major turning points in my life. Nansen was a small, friendly and intimate school, with 60 pupils ranging in age from four to 17. It shared its facilities with a school for children with learning disabilities and one for ‘delicate’ children—those with disabilities such as brittle bone syndrome, pulmonary or cardiac problems and dwarfism. This was the first time I had come into contact with other children with sight problems, let alone children with disabilities and some who had a terminal illness. It was the beginning of an important learning curve for me—I learned to see the person, not the disability.

My first day at Nansen was a terrific eye-opener. It was completely different to anything I’d experienced. The classroom seemed practically deserted with only eight children. I felt almost exposed, but soon learned that there was now no need to hide, and I settled into my new way of life quickly, despite it being so different to anything I’d yet experienced. It was at Nansen that I learned to accept my fate. I was going blind.

When I was 15, the specialists examined Dad and me together for the first and last time. I don’t know why it took so long, but the doctors were able to confirm that our loss of sight was caused by the same condition and that it was hereditary. It was another 10 years or so before the doctors at Moorfields Eye Hospital confirmed that the condition we shared was RP.

At that time, there was very little known about the causes and effects of RP, but over the years of seeing countless specialists and genealogists, I’ve learned that my family has a dominant form of RP in its genes—dominant in that there is a 50/50 chance of the affected parent passing it on.

I inherited RP from Dad, who inherited it from his mother, who probably inherited it from her father. This means that by deciding to have children, my wife, Sarah, and I have taken a gamble. There was a 50/50 chance our baby could have had RP, but indications to date show that our son Thomas’s eyesight is normal, and I fervently hope that he doesn’t inherit the rogue gene that causes RP. If he does have RP, I will be there to help Thomas through it, just like my father did for me, and show him there is no reason he cannot do whatever he wants in life.

As a father, I now realise that Dad must have felt guilty about passing his condition on to me, but we never discussed it. I must admit, I probably didn’t make it easy for him to broach the subject. It was something I didn’t want to talk about, and for a long time I refused to acknowledge it. I convinced myself that if I didn’t talk about going blind, it wouldn’t happen. I recall Mum telling someone that I was ‘partially blind’, and I corrected her that I was in fact ‘partially sighted’—a small but very significant difference, to my mind.

But as my sight deteriorated, I began to feel increasingly sorry for myself. I am also embarrassed to admit that I felt bitter towards Dad for passing the rogue gene on to me, for condemning me to a life of blindness. Why me? Why should I have been cursed with losing my sight when Sue and Ange both had 20/20 vision? But the truth is, I’m glad that it was me and not them who inherited RP. I truly believe that I never would have been so focused on becoming an elite athlete and would never have gone on to set 22 world running records, win 29 international gold medals, or be presented with the MBE by Her Majesty the Queen, had I not lost my eyesight.

Going blind forced me to focus. It forced me to take a good hard look at myself and challenge my own and others’ preconceived notions about what a blind man could do. When I started coming to terms with my sight loss, I realised self-sympathy is no sympathy at all. Dad enjoyed a full life, helping to produce and bring up three fit, happy and healthy children. Where would we have been without him? Selfish feelings were forgotten. There was no reason I couldn’t live my life to the fullest, too.

And I soon realised that life can be funny, compensatory and unpredictable, all at the same time. As I learned to cope with my blindness I stumbled upon an escape, more by accident than by design. Blind people can feel isolated and alone, trapped in a world of darkness. I can’t say that I’ve never felt isolated, but I was lucky enough to find something to fill the void. I found running.

Chapter 2 – Blind panic

It took me 20 years to discover my gift, my aptitude and my talent for running, but since then it has been the one constant in my life, apart of course from being blind. One of the reasons I run is that it is something I am good at. I feel alive when I run. When I was growing up, my failing sight just made me feel clumsy and awkward, but when I run I feel tall and graceful and confident.

I was lucky I had Dad to remind me that blindness is a long way from being the worst thing that can happen to anyone. He used to say: ‘Life is a challenge, and sometimes it’s more challenging than at other times.’ My father enjoyed few of the advantages I did, because there was less support for the blind when he was growing up. When he was courting my mother, being ever the gentleman he would walk her home and then catch the Tube back to Fulham. Once he became disoriented on the platform at Leicester Square station and fell onto the track. Thankfully there were no trains coming at the time.

By the time they began dating, Dad was able to see very little, but he did his best with the limited sight he had by focusing intently on what was around him. Mum used to tell the story about them catching a train to go on their honeymoon; when the train pulled into a station, Dad leaned forward to look out of the window and eyeballed a chap who was minding his own business on the platform. She says she wasn’t sure who got the biggest fright.

Despite the occasional gaffe, at no stage during our childhood did Ange, Sue or I consider Dad to be anything other than normal. We couldn’t take