Simon Hill, who represented Team Gb in the Beijing Paralympics, talks to CHECT about the highs and lows of living without sight. If you are affected by the issues raised in Simon’s piece, please contact our support team on support@chect.org.uk – we are here to support you at every stage of your journey with retinoblastoma.
I don’t remember much about the first couple of years battling retinoblastoma, so I can only describe it how it was described to me. My parents spotted some kind of discolouration in my right eye when I was less than 6 months old, and I ended up at Birmingham Children’s Hospital where the diagnosis was given and my right eye was removed when I was 6 months old.
This was done with the hope that the cancer would be removed and my left eye wouldn’t be affected so I would at least be able to see out of one eye. I don’t know the exact timings, but it was discovered that unfortunately tumours had appeared in my left eye, and so treatment began to try and remove the cancer from my eye. As I understand it I was given a course of radiotherapy at the children’s hospital, but when I was about 3 years old my parents chose to take me to St. Barts in London to be treated by Dr John Hungerford.
I wasn’t aware of exactly what was going on, all I knew is I had one artificial eye and one real eye that I could see out of. I couldn’t remember being able to see out of both eyes so really didn’t know any different. I was told my left eye was still poorly and so that was why I had to continue to attend hospital. The visits to the children’s hospital were only day visits. As we lived in Stourbridge in the West Midlands it wasn’t a long journey to and from the hospital so that was an advantage for my family. However, when I started going to St Barts that changed the routine for everyone. We would travel down to London, and I would be in hospital at least one night attached to a drip. I now know this was my chemotherapy.
I was my parents’ first child, but by aged 4 I had a two-year-old sister and a newborn brother, who were also screened for retinoblastoma. After a period of four or five years they were discharged with no treatment needed. I don’t know how often we made the journey to London but trying to manage that and making sure my siblings were taken care of put a big strain on my parents. They argued a lot, and although I didn’t understand it at the time, I now know the additional strain that this must have put on them.
Going to hospital was a major part of my life in the early years – either going to a local hospital for blood tests or going down to London for chemotherapy. One time that sticks in my mind was when I went for blood tests. I expected to go home as normal after, but my blood test showed there was something not quite right with my white cell count – meaning I was more susceptible to infection. I was taken to another local hospital, put on a drip in a room of my own with a TV and some of my videos from home brought in to keep me entertained. It was close to Christmas, so I remember people coming in with presents and me struggling to unwrap them with one hand. I was in there for three or four nights as I remember, including Christmas eve and I woke up on Christmas Day 1988 in hospital. I remember lying in bed, and people coming in smiling and saying I could go home. I escaped and made it home for the rest of Christmas, albeit weak and struggling to open my presents.
My treatment continued, and although I didn’t realize, my sight in my left eye was deteriorating. By the time I was 5 years old, my sight had completely gone. I remember I could see on my fourth birthday, which I started off in hospital, but couldn’t see by the time my fifth birthday came round. A couple of years later I remember my parents coming out of a meeting with Dr Hungerford and my mum was crying. She said she was upset because they were closing the unit at St Barts, which I guess was the best she could come up with at the time because of course they weren’t… I believe that is when my parents were told that my left eye had to be removed to save my life. I remember my dad having a talk with me about how the doctors wanted to get rid of that “bit of rubbish” in my left eye so they needed to put me to sleep with some special gas while they did it. I don’t remember what I said or even thought, and aged 7 I was taken in to have my left eye removed. Unlike the first operation when I was 6 months old which I don’t remember, I remember the second one clearly. I remember on the journey from the ward to the operating theatre I refused to let the nurse put the blanket over me because I felt like that was a show of weakness. I just laid there telling myself I was not going to cry – I felt numb. I remember taking the few breaths of gas and then nothing until I woke up and inspected the damage. I found I had a big bandage over my left eye, but no drips in me so I could use both arms. My mum appeared next to me and when I asked if I could go home she said it was 9pm and so we wouldn’t be able to get a train and the doctors wanted to check on me in the morning.
When I wasn’t having treatment, I was just like any other boy. I knew I couldn’t see and that meant I was different to most other children, but I didn’t have any fear about trying to do whatever they were doing – I only wish that was the case now. I wanted to ride a bike so I did, I would ride around our estate and have no more accidents than sighted kids. I wanted to play football so I played football. Looking back now I’m not sure how I did it and I’m not sure I could do it now.
I think the first frustration I felt about not being able to do something I wanted to do was when computer games started. I remember my brother playing games like Sonic the Hedgehog and completing level after level, but when I tried I could only manage to get to level two, which considering all I was doing was pressing buttons and hoping was impressive I suppose.
Overall, being blind didn’t bother me that much until I reached my teenage years. By this time I had been taken out of mainstream school and sent to New College Worcester – which was a specialist school for the blind. This was probably a good thing education wise, but not a good thing for me social-life wise. Although I had friends at New College and (because it was a blind boarding school we were from all over the country) it was fine during term time when we were all together, in the holidays it meant that you had to make do with talking on the phone. which led to high phone bills being run up in my case. My parents had divorced when I was six, and my brother and sister were living with my mum. I had stayed with my dad, so I spent most of the time in school holidays at home alone. It also meant that I lost touch with my local friends from primary school, and I now only keep in touch with a small number of my friends from New College.
One thing that being at a blind school did for me was give me the opportunity to play competitive football for the first time. Although even in that setting I was still at a disadvantage, because playing as a totally blind person against partially sighted people isn’t exactly a level playing field. However, I tried my best and in 2003 when I was in my final year at New College, myself and a couple of other boys were invited to go along to train with the blind England squad following a recommendation from our P.E teacher. We went along and after attending a few training camps the three of us were selected to take part in a tournament held in Buenos Aires in April 2004. Over the next six years I represented England 31 times. Unfortunately, my time was blighted with the frustration of picking up injuries at the worst possible times i.e., when there was a match coming up. I have supported West Bromwich Albion since the age of seven, and in 2006 I helped set up the West Bromwich Albion blind team who I have played for ever since and am club captain. For a few years I was representing my club as well as my country at football which was something I never imagined being able to do when I was growing up, because there just isn’t the same amount of opportunities out there for blind footballers as there are for sited footballers. It has given me a number of highlights including winning the national blind league on a few occasions with West Brom, and representing England at three European championships finishing runners up on two occasions, and two World cups. However, the biggest highlight has to be qualifying for and playing in the Paralympics in Beijing back in 2008. Representing England at international tournaments was special but stepping into the team GB set up was another level. We were just one small group of many with different disabilities, and all competing at a range of sports, By the time you got into the Olympic village and were amongst the other country’s teams, you realized just how enormous the Paralympics really is.
We spent two weeks training and acclimatizing in Macau, where the facilities were certainly a step up from the football tournaments. Team GB were put in a luxury hotel, with plenty to keep us occupied when we weren’t training. My favorite activity was the driving range. It was unusual because at the end of the driving range was the South China Sea, and there was a man out on the water in a boat whose job it was to collect any balls that went into the sea. I am not sure what the hotel staff made of a load of blind people being let loose with golf clubs and a basket full of balls to whack around but there were no injuries to report…
My big disappointment about Beijing apart from the fact we only managed to finish fifth, was that because our first match was at 9am the morning after the opening ceremony, it was decided that we would be unable to attend. We missed out on the experience of walking into the stadium with the crowd welcoming us, and I know that would have been an amazing experience.
We were able however to join the rest of the GB Paralympic and Olympic teams on the celebration parade through London a few months after we got home, and that was certainly an amazing experience. The number of people lining the streets, the cheering, and getting to meet the Queen at Buckingham Palace are memories that will stay with me forever.
Alongside football in 2007 I managed to get my first job working for West Midlands Police as a non-emergency call handler. This opened my eyes to working with the general public and I have many stories from my four years in the job. The demands of trying to work full time and meet the training demands put on us to be fit for football started to take their toll on me and by 2010 I knew I wasn’t feeling myself and needed some help. I was diagnosed with depression and after picking up another injury playing football I felt that I was caught between football and my job – neither of which was making me happy. Unfortunately, I wasn’t going to get paid for playing football, but was for doing my day job, and at that point I had bought a house and so had a mortgage to pay. I felt I had to choose my job and step away from the pressures of football – for a while at least.
This is where I feel living as a blind adult is much harder than living as a blind child. I was run down and fed up with my job, but it had been hard enough getting this job, and I didn’t feel getting another in the same way sighted people can do was an easy solution. I did manage to find another job working for NatWest in 2011, and that went ok for a few years, until I ran in to some trouble due to the accessibility of systems which ended up with me having to give up the job in 2017. Since then, I have not managed to find employment again and have battled constantly against feelings of hopelessness and feeling like I can’t find a way into a world designed for sighted people. I have felt like this on and off over the years but as an adult, there are fewer options out there in terms of work and activities you can join in with. Asa shy person, trying to get where you want to get to is hard, and it takes so much effort to keep getting up again after the knock backs, and all the time I think this wouldn’t be happening to me if I wasn’t blind. However, over the last couple of years I have been having a go at becoming a self-employed massage therapist. I passed my first course in Swedish massage in August last year, and have just passed a course in sports massage, while continuing to look for employed work.
Being blind isn’t the end of the world, you can still have a fulfilling and happy life, and there are blind people out there leading great lives – they have families, wives, husbands, partners, children and jobs. I’d be lying if I said that being blind doesn’t frustrate me because I feel it has robbed me of things that sighted people take for granted, the freedom that being able to drive gives you for a start, and I like cars so I am sure I would have been a keen driver if only I had the chance. I don’t like relying on people, and I think you have to try to make things happen in life because no one else is going to do it for you. If you have good people around you who are supportive, treasure them, because not everyone has that.
CHECT continue to support adults who had Rb as children. They connect people on social media, and facilitate in person and online meet ups to allow people to share tips, and establish friendships. They are well connected with other organisations and can signpost and refer in to other support services. They have up to date information and can support around late effects. Contact the support team on support@chect.org.uk for more information or visit the support section of our website.