Ursula and Mike's story: learning to live with an undiagnosed sight condition

My husband Mike, who is a retired journalist, lost his sight ten years ago.

When he first started to complain about his vision, we visited our local opticians. They suspected a cataract and recommended we go to a private eye hospital. The hospital consultant booked Mike in to have, what they thought was a cataract, removed.

However, within a week, Mike couldn’t see out of both eyes! He was seen by another consultant who said he thought it was cancer of the optic nerve. Being told that was such a shock, as the first consultant had been so confident it was a simple cataract operation.

I began researching online and made a list of all the possible eye consultants we could speak to. I made phone call after phone call, being passed from one receptionist to another, eventually being put in touch with a doctor who saw us and said that Mike had never needed the cataract operation.

The diagnoses have ranged from autoimmune disease of the inner eye to cancer of the optic nerve. There have been a number of MRI and brain scans, all have proved negative, thank goodness. However, to this day none of the many eye consultants and neurologists are unsure what Mike has. All we know it is a very rare eye condition and no one knows either the cause or any cure as yet. We live in hope.

For the past decade, Mike has been with various wonderful research teams at both Moorfields Hospital in London and Bristol. He has taken part in a number of trials including plasma IV. Whilst there may not be a cure or solution during his lifetime – Mike is 75 – the research may well help others who suffer from the same autoimmune disease of the inner eye which attacks the retina and photo receptors. 

Learning to live with sight loss 

For a long time, Mike was in denial of his sight loss, and so was I, but in the last three years we have made incredible strides with living with sight loss.

It has been and still is a difficult journey for us both, especially since Mike was away from home for the best part of our marriage reporting for BBC TV News all over the world, largely from dangerous areas. What makes things more difficult is that Mike has been a fiercely independent person. Since his rapid sight loss which coincided with Mike’s retirement, I have been as proactive as I can to help make Mike's life enjoyable, meaningful and near ‘normal’.

Mike has been superbly knowledgeable, both digitally and technologically for most of his life, which means he now uses Apple and Alexa technologies to the full. We have eight Alexas around the house. He uses voice control for everything. All SMS and email messages are read out, he dictates every message; and with his subscriptions to The Times, FT, Spectator and Economist - all articles are read out by ever improving AI technology. Only Private Eye remains stubbornly off-line only in print.

With the wonderful assistance of Sight for Surrey, I have learnt to guide Mike 'off road', so that we can now hike at quite a good pace by linking arms and 'striding out' along the Surrey Hills, the North Devon coast, Guernsey coastal paths and beyond. 

It has taken Mike a long time to come around to the idea of using a white cane, but this year he has fully embraced white cane training with Sight for Surrey’s Tracey, and that has been the biggest breakthrough, as it has enabled us to get back to pursuing our individual interests, which is such a positive thing. It’s meant that I’ve been able to go away on my own again for a short while, and Mike has felt confident to stay at home on his own. He also has the assistance of Sight for Surrey’s 1-2-1 paid for service, with a couple of male guides who take Mike off road walking when I am working.

We have always loved watching TV together, but that fell by the wayside when Mike lost his sight. For a time, we would sit separately, him in his office chair listening to the radio and I would watch TV. 
So, three years ago, I began looking into Audio Description (AD). The BBC at the time was only 10-20% AD, so I decided to write to them about it and they responded. Things are so much better now, every programme is AD, even Strictly Come Dancing!

We are both great theatre goers and I have the number for every theatre Access Line. I ring them up and we book tickets with AD performances with regular visits to The National Theatre and Shakespeare’s Globe in London, and the Festival Theatre in Chichester.   

A renewed love of golf, learning the guitar and keeping fit

A while ago I looked at the RNIB website which informed me of the many things people with visual impairment can do, with links to all the sporting and musical activities. I contacted the Blind Golf Association (BGA) and they put me in touch with the captain of the RAC golf club who explained how he guides ‘blind golf’ for the BGA during tournaments. I arranged to meet him with Mike who was extremely adamant at this point he never wanted to play golf again. Mike said: “What’s the point? I can’t see the ball; I can’t see the hole!”  Mike had been an excellent golfer since the age of 9 but had given his golf clubs away upon his sight loss. We met Paul the golf captain at the RAC a couple of years ago – and the rest is history.

Mike has been taking golf lessons twice a month with a wonderful pro who in turn has taken a course in teaching ‘blind golf’. Mike can now go around 9-holes with his putting being extraordinarily accurate with his teacher or a friend guiding him and telling Mike what to do.

I then looked for a guitar teacher who could continue the work which Mike had attempted over zoom during the Covid pandemic in 2020 (which had been hopeless). A year ago I found an enthusiastic teacher at the wonderful music school, called ‘Music Works’. Since he was only used to teaching children, Mike has been a challenge – once again the guitar teacher, originally from Nashville, has risen to the challenge and both men talk ‘music’ whilst Mike wants instant success, playing Led Zepplin.

I got Mike a Personal Trainer and a spin bike in the garage, so he can stay physically fit. He comes along to my Pilates classes where particularly the balance exercises provide him with confidence to move around and avoid him falling.

I no longer worry about him when I go away, knowing he can navigate around the house and of course use the white cane to take the short walk into town.