December 3rd 2020 marked an unusual anniversary: 25 years ago a young footballer faced the trauma of losing his sight, but Gavin Burden’s never-give-in attitude, the love of his family and his discovery of golf, have all helped him to thrive.
By Ben Evans
Twenty-five years ago, Gavin Burden was a fit and active young man of 21, working as a carpenter in Salisbury while thinking about his career options. Free time often meant a group of friends getting together and playing football. On the pitch he was “a versatile right winger” who was good with both feet, while in the stands he watched his beloved Southampton Football Club, ‘The Saints’. Peter Shilton, Danny Wallace and Matt Le Tissier were the heroes: Gavin even followed the team to Hamburg with his Dad, for the UEFA Cup.
In 1995 Gavin had been suffering from migraines for two years and when playing football had started to struggle with his vision. “One Sunday morning I was playing and I couldn’t work out whether I could see three footballs or no ball at all.” Gavin drove his car home and made an appointment with his GP.
An urgent MRI brain scan followed, in a travelling mobile unit in the hospital car park (there were no on-site scanners at that time). The results of the MRI were about to change everything, forever.
December 3, 2020 marked the 25th anniversary of Gavin being diagnosed with a tumour in his brain. At 8am that day in 1995, at Southampton General Hospital, Gavin’s surgeon Peter Lees carried out a craniotomy to try to save Gavin’s sight. The medical team were cautiously hopeful they could remove the tumour but there was also a 50% chance of a brain haemorrhage due to the amount of Neurofen Gavin had been taking for the pain.
Eight hours in theatre found that the tumour was lodged in an area too complex to remove safely without potential catastrophic side effects. It was “the size of an egg”. The medics believed Gavin could have harboured the slow-growing tumour since as young as five years old. The condition caused Gavin to suffer sight loss of 75%. Horrendous news for Gavin and his family.
The one positive: it was benign. All the work from here would be about pain management and Gavin’s long-term welfare. This wasn’t straightforward: cerebral ‘shunts’ had to be fitted into his skull to treat hydrocephalus, the swelling of the brain from the tumour. Three times in the three years that followed operations had been required to replace these shunts. They are still doing their job to this day.
Gavin said: “They told me this type of tumour was a one in a million chance. I was devastated to be told about my sight loss. It’s amazing to think I have now lived with the tumour for almost 25 years. I have had to overcome many hurdles and still am doing so to this day. Usually the pain, if any, is very manageable but the demands on life in general are greater. Losing your sight is difficult to explain but we can all imagine it can’t we? In my case it has become more difficult over the years, I’m being put to the test all the time as I cope with my working career and now raising a family. I do have negative thoughts and sometimes wish I could just turn the lights off and rest, and be pain and stress free.”
As Gavin relates these thoughts you can understand how his lack of sight has produced more than a physical darkness over two-and-a-half decades. But human beings frequently have something inside them that helps to adapt to new circumstance: in short, the survival instinct.
Gavin has certainly adapted well, including turning a series of jobs into a varied and fulfilling career. One of his first jobs after rehabilitation was working with young adults with learning disabilities at Salisbury College, where he also studied for a further adult teaching qualification.
Gavin later “really enjoyed” developing features in the entertainments section, and producing a restaurant guide, for his local newspaper, the Salisbury Journal (“some great times and lovely people there”) before working as a business development manager for a local graphic design company. He enjoyed five years as a personal development worker for autistic young people before his current role as a project manager working in property management. Gavin said: “I love a challenge and see myself as a problem solver, which inspires me to succeed.”
During his time at the Salisbury Journal, Gavin met local girl Lindsey at a business breakfast group organised in the town (Lindsey now runs her own business). They hit it off at a corporate event at Salisbury Races, leading to marriage and children Frankie, aged nine, and Maisy aged 11.
His homelife was settled, which helped living with his condition immeasurably. But throughout Gavin’s struggles over the first 15 years after surgery, he missed the ease of sociability and the competitive camaraderie that football offered him as a young man. A certain insularity took hold, affecting both his confidence and his once positive outlook.
Gavin said: “Old friends and colleagues were of course sympathetic but that’s not really what you’re after. They used to ask me how much of my sight I had lost, and I didn’t know any figure at the time, and how do you really answer that question? In something of a private joke with myself I would throw back ‘I’ve lost 37%’, and this answer seemed to satisfy them. When one day my ophthalmologist informed me he could in fact give me an accurate figure, I was actually really shocked to hear I’d lost 75% of my sight. Even though nothing had changed physically at that time, this news really did knock me for six for a while, it was hard to handle.
“However, I am very fortunate that you do not notice there is anything wrong with my sight. As they say, not all disabilities are visible. I also have a lively sense of humour and have plenty of determination to see me through.”
This focus was demonstrated in 1998, when Gavin took part in a sponsored 100-mile trek in aid of The Guide Dogs for the Blind Association, hiking across the Atlas Mountains in Morocco over five days. “This was an amazing experience with wonderful people for a great cause,” said Gavin. “It also helped my confidence at a crucial time for me.”
One feature of Gavin’s condition is that while he can’t see any detail out of his left eye, as it is completely blurred, he does have what he describes as some “tunnel vision” in his right eye. This had advantages, for instance he found that he could still enjoy going to St Mary’s to watch Southampton FC. “If I stand well back from the pitch I can follow a lot of the action as it opens up the view. The club would have kindly given me a seat at pitch side but that wouldn’t have worked for me at all, as I would have had to concentrate so much more as my range of vision would have been limited (sometimes of course, you wanted to shut your eyes anyway, as the performances were that bad at times!).”
This ‘advantage’ of his narrow sight also brought him to a defining moment in 2010 while Gavin caught the park and ride bus to work in Salisbury from his home in Laverstock. “I’d like to get there nicely on time so I’d often find myself talking to the park and ride site manager, called Pete. He was a lovely guy and I soon realised he loved playing golf. I started to think that despite my vision issues I might be able to concentrate and focus on the golf ball when swinging a club. Pete actively encouraged me and said he’d gladly host me at his local club. Now, I hate getting lifts off people, feeling dependent on them, it’s one of my big issues, but I liked and trusted Pete and told him that if he could give me a lift one day, I’d love to try playing golf.
“I was soon having my first golf swings at Salisbury & South Wilts Golf Club. Obviously there were lots of good, bad and ugly shots but I connected with a few and I was hooked! I have been a member there ever since.”
Gavin found if he connected well he could watch the start of the ball in the air in its travel. Like all golfers, he could also soon “feel it” around the impact of hitting the ball, knowing instinctively if the ball had gone to the right or the left.
“Becoming a regular player, playing with good mates, I now absolutely adore golf. I play off a handicap of 14 [he has played as low as 12]. I love it, and love the banter with my friends as this is so important to me and them too.”
Gavin’s new sport led him to make lots of social connections. His group of friends mushroomed. For some years now he has organised annual golf trips in the UK for groups of around 20 players and in the last three years they have travelled to play in Portugal.
“I’m a very proud person. I never wanted the tag of being blind. Only in recent times have I accepted any disability benefit. I hate relying on others too much, so I really enjoy it when I can help people, whether my family or my friends. It really means a lot to me.”
Gavin remembers fondly all his friends from his football days and he still loves a chat about playing for local Salisbury teams, including The Wig & Quill, Laverstock, The Huntsman and “the mighty Avon Rangers”. Great days, but now it is golf that gives him the competitive outlet to keep him focused.
He adds: “Golf has been absolutely fantastic for me. It’s wonderful to be out in the fresh air, enjoying great company, and able to compete well at a sport. I feel comfortable; golf has changed a lot in recent years. It’s not so judgemental. I love being part of a group of friends and organising our golf trips.
“Playing golf makes me feel so alive and is actually crucial to my health and well-being. The banter and laughter with my golfing buddies is the Coke to my spiced rum, it’s essential – and I thank all of my friends at Salisbury & South Wilts for helping me to enjoy the game so much.”
Away from golf Gavin says: “The fact I just get on with stuff I know is credit to me but it takes its toll when things don’t go right. I am married to an amazing woman and have two wonderful children and they keep me going by taking the micky out of me for my mistakes around the house.
“My family and friends are so supportive and without them I wouldn’t be here today, that is for sure. Life has been difficult and I have had a couple of occasions where I have wanted to end it, but my willpower has kept me going.”
He adds: “I would like to personally thank my amazing Mum, Dad, sisters, Lindsey and all her family, and our children of course, and all my family and friends, including all the NHS staff, for everything they have done for me.”
Gavin found himself once again having to adapt quickly to a new situation when his wife Lindsey was diagnosed with breast cancer in January this year. It led to three operations in Southampton Hospital during lockdown.
He said the whole family are now feeling in awe of Lindsey’s courage through her diagnosis, treatment and recovery but it has been a tough year for the Burdens.
“Lindsey is completely clear of cancer now which is the most important thing. She has been so brave. She has always been such an inspiration to me as a business woman, working for herself, and as a wife, Mum and friend, and this has only continued and grown in recent times.”
Gavin was naturally supportive through Lindsey’s trauma, including helping her through all the difficulties of patient care in the year of Covid-19, but an old vulnerability did come to haunt him. “Because I can no longer drive, I couldn’t help by giving Lindsey a lift in the car to hospital for major surgery, like any partner would want to do at this time. Lindsey’s mother had to do all that for me (she was fantastic) but it was heartbreaking for me as I felt totally helpless. It’s hard to explain, this lack of independence but it is a very big issue for people with sight loss.”
In recent times, Gavin’s eyes have caused him added difficulty and he is aware that 25 years of effort during his jobs has taken its toll. Acute eye strain and fatigue led him to decide a couple of weeks ago that he would call time on his full-time career for now.
“I think the break will be good for me physically and mentally in the long run. This was actually one of the toughest decisions I’ve had to make, but a break will help me look at the future and hopefully help my condition, or at least give my eyes a rest.”
Gavin believes that a role helping young people who are faced with sight loss or other disabilities might help him use his own experience to the best advantage for others.
“If I could combine what I have learned through my work, and my experience of living with 25 years of sight loss, and put that to helping young people, possibly through sport, that really could be quite satisfying.”
During his well-earned rest, the golf course and those good friends are sure to lure him out in 2021.
While looking into sport and disability online Gavin stumbled across the work of EDGA (formerly the European Disabled Golf Association), an international body that helps people of all abilities to thrive through golf. EDGA offers competitive opportunities to golfers all over Europe and beyond and such events may appeal to Gavin when Covid-19 is hopefully at bay next summer. England Golf holds an annual championship for golfers with disability and Gavin has fond memories of competing in such an event eight years ago, held at The Shire golf club near London.
“Wherever and whenever I do play next, I’ll be thanking my playing partners and also offering a little special thanks to Pete from the park and ride, whose positive talk about golf made such a great difference for me.”