Wondering if you might be going blind is not a pleasant thought. Knowing that you’re going blind can feel like you’re heading for eternal doom. In this post I hope to paint an alternative picture of blindness for those readers who know that this is an inevitability. I will also offer some practical advice, and hopefully by the time you’ve finished reading this article the word “blind” will not conjure up such fearful images.
Deteriorating vision is easier to deny than to accept. For one thing, the human brain often compensates for sight loss by replacing indistinct shapes with recognisable ones. So if your eyes register a blur in front of you your brain will try to make sense of it by replacing the blur with familiar objects. The dancing cat or waving monkey may in fact be a crooked fence post or a canvas sign flapping in the wind. At this point your friends or family will probably be nagging you to “get your eyes checked”. Your vision defect could turn out to be something that’s curable or helped by prescription glasses. But occasionally the situation may be more serious. You might suspect this and be afraid to have it verified, or perhaps you’re already under an opthalmologist and you know that sight loss is fast approaching.
This is often where fear of the unknown – i.e. being blind, takes over your rational head. Sometimes the easiest thing to do is simply to ignore the reality and get on with your everyday life. But the trouble with this approach is that one day, if sight loss is inevitable, there will come a point when you can no longer run away from it.
Most sight loss is in fact gradual. It’s extremely rare to wake up one morning and find that you’re totally blind. You’re more likely to realise you cannot see when you’re trying to read something or spot someone in a crowd. This realisation that you’re practically blind will probably hit you with a bang, and your world will go topsy-turvy for a while. Therefore if you know that one day you’ll be blind, it makes sense to slowly introduce yourself to this concept. A good way to do this is to familiarise yourself with some of the gadgets and gizmos that are out there to assist visually impaired people with everyday tasks. You could start with something basic such as a liquid level indicator. This useful inexpensive little gadget has plastic prongs which hook over a cup or mug, and vibrate or beep when the hot water makes contact. You may well encounter resistance from people around you who don’t wish to think of you as being blind. This can make arming yourself with gadgets and paraphernalia tricky, but don’t be deterred. Talking alarm clocks and audiobooks do have some general appeal nowadays, so if you share your living space with others there’s no reason to be isolated. However, other people’s reactions are not always helpful – it might be worth bearing in mind that they will be having to readjust too as your vision deteriorates.
This preparation period could be viewed as a blindfold test drive. It doesn’t mean you have to become preoccupied with blindness, but becoming more self-aware will help you later on Familiarise yourself with what’s available before you absolutely need it. Browsing through the RNIB catalogue or on an Assistive technology website might even be inspiring! You’ll probably be amazed by the variety of aids and gadgets on offer,and most of them don’t require great technical know-how to operate. The whole point of these things is to help not hinder!
If you’re at the stage where you know your sight is failing this is a great time to build up your list of contacts. Your local association for the blind, or charities such as RNIB or Action for Blind People are great resources. The RNIB has a helpline: 0303 123 9999. Knowing that you’re going blind is actually a great opportunity to consider what you want to do with your life, and to ascertain what assistance (if any) you might need to achieve your goals. It doesn’t have to be a headlong dive into despair.
Coming to terms with blindness is often harder than the blindness itself. Facing it head on might seem like the last thing you want to do. But from my own experience the more you stick your head in the sand the longer it will take to readjust. As I mentioned before, blindness is more often than not a gradual process. Imagining being blind can be frightening, so it’s a good idea to find someone who will listen to your fears and anxieties. An objective person such as your GP or RNIB staff might be able to offer more practical advice than someone close to you.
What is being blind like? Blindness does not necessarily mean total darkness. Most registered blind people in the UK retain some light perception or are able to make out hand movements. Being registered blind essentially means that the vision you have is no longer reliable or useful. This does not mean your life has to stop or tone down, but you will need to find other ways of continuing your hobbies. For instance I’ve always been a bookworm, and when I lost my sight I missed reading more than anything else. But once I’d accepted that I could no longer read print I began listening to audiobooks and Radio Drama. Although it doesn’t quite equal reading, I can still get my fill of literature from Audio libraries such as Calibre and RNIB.
Whether you lose your vision suddenly or gradually you’ll find that you learn to manage indoors far more quickly than outdoors. The big wide world outside your front door might become a source of terror. This probably accounts for why around 180,000 visually impaired people never leave home alone. I can’t pretend that the outdoors isn’t scary at first. But I know for sure that it gets more and more scary if you start hibernating. For this reason I would make it a priority to step outside your front door at least once a day. You don’t have to go anywhere – but just listen to the birds, inhale some fresh air, stand still and absorb your surroundings. Slowly a whole new world will start to emerge. Sounds will seem sharper, the rain will make your nose tingle with a medley of smells, and if you’re lucky someone might even call a greeting to you. Even if you meet no one, you’ve shown yourself to the world and you’ll go back inside a more refreshed person. In time, you’ll find that you still have a place in the world.
It’s common for newly blind people to become very depressed. Losing your sight is a huge loss, and you will grieve. If your sight loss is sudden and you’ve had to change your whole lifestyle your emotions will be totally out of sync. My advice would be to go with your instincts and not to expect too much from yourself. Accepting that your feelings are natural will help you move forward. There’s no time limit to adjusting – some people may take 20 years to feel comfortable with their blindness, and others just a few months. It’s your journey, and you’re the one deciding how fast to travel. Perhaps it’s worth saying here that a lot of people who find themselves suddenly disabled in any way struggle with asking for or accepting help from others. You’ll learn how to balance keeping your pride and independence with getting to where you want to go. This comes with experience.
But blindness or near-blindness does not mean the end of the road. In fact it’s often a new beginning, despite the fact that you’d rather not have had a new beginning. When I was at the ‘Guide dog of the Year Awards this year I met Scott and his dog Travis. Scott lost his sight in 1993 and has just received an MBE. He’s trekked hundreds of miles, climbed Ben Nevis with his Guide dog and raised £!25, 000 for Guide dogs. Blindness does not stop you having a life. Not every one will have the inclination to climb Ben Nevis, but whatever your goals are you can still achieve them. Being blind may mean that it takes you twice as long, but perseverance pays off. In my own life it took 18 years to be matched successfully with a Guide dog, but the great benefit of achieving something after a real effort is that the victory tastes super-sweet.
There will undoubtedly be days when you wish you were dead. But if you forge on you will emerge stronger and more determined than ever. Your life will not be the same as it was before your sight loss, but that does not necessarily mean it is worse. Whether you end up training with a Guide dog, competing in the Paralympics, wading through the CDs of the RNIB library or learning to touch type – you will find your own way of learning to live with blindness. If you keep hold of your dreams and don’t give up, the darkness will eventually lose its gloom and you’ll feel the radiance of a rainbow light up your life.