Rebecca ate lunch at Dans Le Noir? Clerkenwell, London, as a guest of Vision Express and the Macular Society as they launched their joint initiative to highlight the lack of funding for research into Macular Disease.
It is a good job that my visit to Dans Le Noir? (excuse the question mark but that is how they spell it) wasn’t for a restaurant review. I would have told you not to bother. The experience was awful. I was totally crippled with fear, cried for the ninety minutes I was at the table and couldn’t eat anything. I managed two glasses of red wine, without which I may well have had a proper panic attack and would have had to be escorted out of the dining room hysterical. As it was, it was a close thing.
So why put myself through this? To be fair I hadn’t realised that the concept was totally overwhelming pitch black, I thought darkness was how it felt when you turned out the light at night. This wasn’t that kind of dark. The darkness in the dining room at Dans Le Noir? is like being buried alive with the added bonus of being trapped with people you don’t know. I am attempting to use words to describe it but my vocabulary isn’t up to it.
Does anyone remember being five years old and lost in a very dense crowd of tightly-packed, noisy and threatening strangers? You thought screaming but work, but the more you really wanted to say ‘help’ the further away your voice sounded until it seemed easier to give up and sit on the floor crying, even though you risked being walked on. I can only say I would be an awful person if I lost my sight.
My father developed Macular Disease shortly after he retired. Within a few years, he was registered blind. He became very depressed, drank too much and was extremely angry. Life was really quite difficult. My parent’s relationship became even more fractured and the last years of his life were not happy ones.
Sitting at the table in the dark yesterday was the first time I truly appreciated why he changed so much as he lost his sight. I suspect that I would never leave my home, give up real food and live on liquids, probably those with as much alcohol in as I could find. Of course, like so many things, how we respond to life-changing conditions is part of our personality. I think I was the only person on our table to have quite such an intense response to not being able to see. After a bit of adjusting to the practical aspects of finding cutlery and water, everyone else got on with chatting away and eating merrily. After feeling my food with my fingers I lost any appetite, talking was a huge effort, and my brain was concentrating so hard on not panicking that I don’t think I anything I did utter was sensible.
We were all there at the invitation of the Macular Society and Vision Express who have launched a first of its kind campaign to boost funding for macular conditions. Research shows macular disease is more prevalent than dementia – and is now an urgent public health issue forecasted to reach epidemic proportions. The Society has found that, in an escalation of previous estimates, nearly 1.5m people in the UK are affected by Macular Disease (MD), with 300 people facing a diagnosis every single day. And although it is the nation’s biggest cause of blindness across all age groups, without any cure and only limited treatment options, public funding remains woefully inadequate.
MD is a progressive condition that steals the central vision of those affected, leaving many unable to drive, read, watch TV or recognise the faces of their closest friends and family. It is linked to falls, social isolation, depression and suicide, which certainly ties in with my father’s reality after becoming blind.
The older we are the greater our risk of developing the condition. Around one in every 200 people has AMD at 60. However, by the age of 90 it affects one person in five. We are all living longer so the number of people affected is increasing.
Just 0.2 per cent of UK public medical research money is spent on MD. That is nowhere near enough to make real advancements into treatment or a possible cure. Which is why the Macular Society wants to increase its funding of macular research tenfold by 2023 to £6million per year and Vision Express is supporting this by donating £1 from every £10 eye test in December to the charity, to bolster the research pot.
There are steps we can take to help keep our eyes healthy as we age, and as with all health issues, being aware of changes in our eyesight and get a prompt check-up at the opticians is an important step. Because of my father’s history, I am super careful to keep regular eye test appointments and my daughters are the same. There is thought to be a genetic aspect to some forms of Macular Disease (MD) and there are certain lifestyle links to the age-related version (AMD). Smokers are four times more likely to develop AMD than non-smokers. Smoking kills the cells of the retina, reduces the delivery of oxygen and nutrients to the eye and damages blood vessels. Smoking causes AMD to progress faster and makes treatment less effective. Dad was a two-pack-of-fags-a-day man – it wasn’t only his sight that suffered because of this – and it may well have meant that the AMD took hold quicker at the very least. You can lessen the risk with moderate exercise to maintain a healthy weight and normal blood pressure which will benefit your eyes as well as the rest of your health. And eating a healthy diet, with plenty of fruit and vegetables, especially green, leafy vegetables containing lutein, will also support eye health.
My very short experience of lack of vision caused me to feel I was on the edge of mental instability. My charming lunch companions composure and stability helped calm me down. Cathy Yelf, chief executive of the Macular Society explained Charles Bonnet syndrome to me, half of all people with MD are thought to experience visual hallucinations at some time and these might be images of people, animals, landscapes or just patterns. People who haven’t heard of it often worry they are developing a mental illness, but it is a normal response of the brain to sight loss. As fewer messages reach the brain, the cells that normally process vision can become hyperactive and create images of things that are not there. I was sure that if I had stayed much longer in the dark my mind would have gone into hyperactive overdrive. Suffice to say I can’t recommend Dans Le Noir? for a relaxing fun lunch but I can recommend Vision Express if you are in need of an eye test this December as every test will be contributing to the vital work of the Macular Society.
For more information visit: https://www.macularsociety.org/resources
To find your nearest Vision Express: https://www.visionexpress.com/opticians