Debbie's story: Living with dual sensory loss: “when people ask how do you cope?”

Receiving a diagnosis of vision loss

Debbie says: “I hail from the Midlands; I was born in Leamington Spa in April 1965. My brother, Ady was born three years later in September 1968. As there were now newborn hearing tests, he got tested at 18 months old, whereas I was already four years old before diagnosis. We were classed as partially deaf at that point.

“When my brother was 17, he began to have problems with his eyesight, so he was sent to the optician, who then sent us both to Birmingham Hospital to be tested for Usher’s Syndrome 2.

“I was nearly 21 at that time, and for me the diagnosis explained a lot of what I’d already experienced. It was more a case of ‘oh, so that’s why I couldn't see in a night club' or ‘that’s why I missed that goal at hockey’ or ‘that’s why I knocked that glass over!’ But for my brother, it was absolutely devastating to be told by the consultant at just 17 years old ‘you will go blind’.

Despite dealing with her own diagnosis, older sister Debbie took charge

“Because I was the older one and because I’d already experienced some of what we were going to go through in terms of sight loss, I sort of coped better. He still struggles with the possibility of losing his sight completely. Whereas my attitude has always been that if I lose my sight completely, I will deal with it when it comes along. I’m not afraid to ask for help and that is one good thing.

“After being diagnosed with the condition we did all these tests and took part in a couple of clinical trials, gene testing and gene therapy. We didn’t know at that time where we had got Ushers from - there was no one else in the family with it that we were aware of. We now know, due to testing, that my mum and my dad were carriers of the recessive gene and so there was a one in four chance that I would have Ushers, and it was the same odds for Ady.

Finding Fight for Sight, starting the committee and launching an annual Golf Day

It all started when I met Clive Stone playing golf in 1994. We talked about doing a golf fundraising event and between us we decided to do it for Fight for Sight.

When I met Clive, he was Vice President of Fight for Sight. I told him about my diagnosis, and he said you need to contact the organisation. Fight for Sight helped with some extra appointments at Moorfields which enabled us to learn more about the condition and what might happen.

Clive launched The Warwickshire Committee many years before I came on board, but the golf days have helped to raise nearly half a million pounds!

Clive handed over the reins to me 12 years ago. I can’t believe it’s been 30 years to be honest, you just do the same each year and try to improve the day each year with different ideas.

Am I proud of having helped raise so much money for Fight for Sight? Well, yes, I suppose so, I’m quite laid back in that respect. I always say it’s not just me; it’s everybody else as well. I can’t do it without all those that support and help to make the event a success.

I’ve done a couple of tandem sky dives and a solo one back in the 1990s. My landing wasn’t great as I didn’t see the ground approaching! I don’t like endurance events, it always must be a quick thrill for me, so I wanted to do an abseil next or a wing walk, but I may scale the principality stadium, zipwire across, then abseil down. 

Research is hope

I want to try and help find a cure for many eye conditions, and obviously for Usher syndrome as well. I don’t want other people to go through the same, particularly children. I was lucky in many respects, but some young people may struggle with it more.

It’s changed in that now it can be detected earlier and so you know what is coming, but we had no knowledge. I had just come to terms with losing my hearing and how the future was looking only to be told I now had to deal with loss of sight too.

That’s what charities like Fight for Sight have done, they’ve brought it to the fore, more people know about the condition now and the testing is done earlier. So much has changed. With cataract operations, for example, years ago you would have spent a week in hospital. Technology is so advanced now, thanks to research, and it’s great to have contributed something towards that. I wish I could do more.

Exciting times ahead

These are exciting times with the recent merger, seeing how ambitious the charity is, it’s great and gives hope. I would love one day to be able to say that we have helped to find a cure for something. I know it is a long process, but that’s my aim.

And for fundraising?

I would do ten golf days a year if I could! But there aren’t enough hours in the day, as I work four days a week.

I have more ideas for fundraising in 2025 – it’s a big milestone year as it marks my 60th birthday and the 60th anniversary of Fight for Sight.

My dream would be to expand and have a golf day in every county! We have teams that come from Sheffield, Scotland, Bristol, and all over, so there’s definitely an interest there. We reach far and wide with the golf day. Maybe we could even think about having a Fight for Sight Golf Day on the same day on several courses throughout the UK? To raise more awareness and much needed research funds – let’s make it happen!

Debbie’s quiet determination to raise all she can for the charity inspires a loyal following.

Among those taking part in the golf day and supporting Debbie’s efforts for Fight for Sight, she reveals, is Dr Anthony O'Driscoll, the eye surgeon who replaced her cataracts.

Debbie explains: He is also a supporter of Fight for Sight independently and does a range of endurance events. He’s been such a generous supporter and supports the charity on his own. 

What advice would you give your younger self?

Don’t be afraid, no need to panic. Support is out there for you now and when the condition progresses. Friends will step up without you needing to ask.

Fight for Sight will be a support with information and updates on clinical breakthroughs.

I’d also have liked to tell my brother when he first was diagnosed with the condition how technology is going to bring real improvements.

Don't worry so much and let it stop you enjoying your life, you’re not going to lose your sight quickly, you may not notice it until you get to your late 50s. 

Discovering, losing, and reclaiming a life’s passion: golf

I started playing golf in 1988 with Helen, my tennis partner at school. We also enjoyed a game of snooker and one evening at the snooker hall we challenged two brothers to a game of golf! What were we thinking! It turned out we were naturals and really took to the game, so we bought some golf clubs and joined a local club.

Our biggest achievement there was being part of a team of three ladies and winning the National Association of Public Golf Courses Martini Bowl in 1992.

We later moved to Stoneleigh Deer Park, a members’ course, and before long we were winning trophies there too. I took my turn on the committee and was Competition Secretary for a few years. I held the course record for a very short time - just one of those days everything went in!

Most of my holidays from work were taken to enter golf tournaments around the region and we had a great ladies’ team who won a fair few major competitions. So, yes, it’s fair to say that I am competitive!

I gave up golf in 2006 because my sight had deteriorated to the point where I couldn’t be competitive anymore. I spent most of my time asking: ‘where did my ball go?’ I couldn’t see my ball in flight, so couldn’t work out whether I had faded the ball, blocked it right or even if it had gone in the hole!

I wish I had found England and Wales Blind Golf before I joined them recently. I would have still been playing off 11, but now I have a high handicap, and I don’t like it, but anyway, it is what it is for now.

I’m determined to improve my game. I’m down from 54 to 36, so that’s something. I need to knock another 10 off that to be satisfied!
It can be difficult to find someone to be available to take you out to play golf, and we are still trying to find more volunteers to be guides.

“I grieve the loss of my independence more than anything”

For me, I think I’m lucky to have had the journey I’ve had because I have had a slow gradual loss. It does bother me, obviously, I have my down days, and I have a lot of  frustration because of the loss of independence.

I’d love to go to the gym every day, but I can’t because I need someone to go with me, especially in the winter because of my night blindness. For most things I need someone to drive me to places which aren’t on my doorstep. I have my dad at the moment, but he’s in his eighties.

Anyone who knows me will tell you that I just tend to get on with it. 
I follow the actress on Emmerdale who had twins with Ushers, and you think that must be incredibly hard. My mum has dementia now, so I can’t ask her about her experience as a mother, with my brother and I losing first our hearing, which was bad enough for her, and then later, our eyesight. Ushers would have been unknown back then. It must have been so frightening for my parents, not knowing what was causing it and not knowing of any other people in a similar situation.

I didn’t want children, and my mum was quite pleased that I didn’t. I don’t know, perhaps I wouldn’t have chosen to have children anyway. But I felt that even though I didn’t feel I had suffered too badly, it affects people differently, and it could have been worse for my child.

I know things are different now, and there is a lot more help around, but at that time it felt like the right decision for me. Would I have made the same decision now? It’s a hard one, I’m not sure I had the maternal bone in me anyway. Things have advanced so much these days, that I certainly wouldn’t discourage anyone from having children now for fear of Ushers. 

“When people ask how do you cope?”

I often say, ‘it has become my norm’ but that’s glossing over the difficulties. I tend to forget the hearing loss side of the condition as I’ve lived with it all my life and fortunately with Usher Syndrome type 2, the hearing loss stabilises and tends not to get worse.

Social situations can be quite hard with both senses impaired. I can’t recognise faces now and its harder to lipread. When out in a restaurant, for instance at nighttime, some places turn their lights down low, and I have to be very cautious when reaching for something with the fear of knocking the wine over! I struggle to hold a conversation, often asking friends to repeat what they said. Hearing aids now can be set to different surroundings and that can help.

Night blindness can be quite scary at first and when you try to explain it to people, they generally say, ‘nobody can see in the dark!’

To keep my independence, I have now had my long cane for three years and this aids me to find kerbs, and make sure there is nothing in front of me. It also helps people understand and move out of your way, so it does have its uses! Before having the cane, I would walk into people and apologise, but now they see the cane and they get it.

I did take a long time to accept using my cane. I call it ‘Mabel’ as i’M ABLE to do so much more independently by using it. I don’t like the noise the roller ball makes on the ground, I was very self-conscious about that, but I’m used to it now.

I now have distance lenses, which will help me later on too, but it has made reading a lot harder. But we are in the age of technology and there are now many apps that can help, and this is aiding my independence. Before these apps became available, I did become very lazy about reading. If I couldn’t see the text well with my glasses, or enlarge it on my laptop, I would give up as it was so frustrating and rather than get depressed about it, I would avoid it!

Because of my lack of peripheral vision, I’m often startled when people appear at my side or walk in front of me. I can’t hear them coming either!

And I get a false sense of security in a way because I can see straight ahead, but that’s until I trip over a wet floor sign!

When is a door not a door? When it is ajar...  That joke is my reality as a door half open is a hazard for me and I’ve had many bumps on my head to prove it!