A descent into darkness by Simon Mahoney
1 June 2016 17:05
I joined the Royal Marines in 1966 and after a brief career left to become a social worker. The next 30 years were spent in various social work roles. By 1998 it was clear that social work was changing out of all recognition. Subsequently the next 10 years were spent as a trainer, as a freelance artist and teaching psychology. I moved to Derbyshire in early 2012 to develop my landscape painting and for the beautiful countryside. In October 2013, I was registered as severely vision-impaired/blind. Since then I have not had any effective sight and it continues to deteriorate.
Becoming blind is an intensely personal event which is unique for each one of us. The one thing that we all share as we lose our sight is uncertainty. We have no idea what is going to happen next. It is this not knowing what to expect that is so very stressful. All that can be done is to expect the unexpected and not allow it to alarm us. Below is an outline of some of the events and thoughts I have encountered. It may forewarn others to some extent and remove some of the stress of not knowing what to expect as sight loss develops.
Very few of us will lose our sight entirely or instantaneously, the far greater majority of us will experience the gradual onset of vision loss. However it occurs the loss of sight is felt as a bereavement with all the anger, denial, confusion and grief that accompanies any great loss. With any bereavement there are two clear options, to allow the event to overwhelm us or to improvise new rules of engagement, adapt our behaviour and overcome the effects of the profound change that has occurred. The change will not only affect your abilities and the way in which you do things but also have significant influence on psychological wellbeing and social relationships.
"At first sight the task of dealing with vision loss seems hopeless and insurmountable and it may well be so, unless two basic and crucial steps are taken."
The first step is to accept that you are blind. This is easier said than done as most of us are extremely good at ignoring what is going on right under our noses if it suits us. However, I feel there is no real choice but to accept being blind if there is going to be any chance of living a normal life. In many respects it is true that it is not what you say but how you say it that matters. My personal take on blindness is that I am not handicapped or disabled but merely have a condition that can be inconvenient and cause problems. This may sound a little glib but if you unpick it there is a clear message about refusing to be shoved into the background, treated as being handicapped and therefore a problem and that there is every intention of living a normal life. However, be aware that your sight loss may cause inconvenience and problems for others. It also allows you to regard blindness as something which causes problems to which there are solutions.
"When told I cannot do something my response is to ask why not."
Once the search for solutions begins you start to appreciate how much help exists to enable near normal life. This brings me to the second crucial step that of actively seeking help. All my life I have been a help giver, very much in control of things and fiercely independent. Taking those first steps I consider to be amongst the most difficult things I have ever done.
After all, nobody likes to be considered a nuisance or a burden. The irony is that you have first to become a burden so that you can learn the skills that help one be independent. For me the simple act of using a signal cane was a tremendous leap towards starting to achieve the objectives of both steps. Initially I was rather diffident if not downright embarrassed. There was no need to be concerned as people seemed to be universally kind and eager to help. Mind you, as someone pointed out, I would not see those who were not.
Tools such as audio navigation on the computer, mobile phone and kindle have all been very helpful as has been the use of analogue rather than digital appliances such as washing machines, dish washer and cooker hob and oven. Other help is in the form of tax breaks, reduction on TV Licence, a personal blue badge, radar key and other possible benefits. Whilst various tools and benefits are very welcome it is the human response that can be overwhelming.
Most of the supermarkets appear to be not only geared up to help but very willing to be involved. The railways have staff dedicated to helping vision-impaired people, or VIPs, as is the London Underground system. This implies that as long as you have a white stick and a tongue in your head it is possible to travel independently anywhere. The response of people in general, and the staff of Blind Veterans UK in particular, has been truly amazing and have changed my previously somewhat jaundiced view of human nature. I feel it is useful to point out that asking for and refusing help are both a social skill in their own right. Balancing the desire to be as independent as possible and refusing help is difficult and requires tact and skill if you are not to alienate those who wish to help. Curiously, strangers are much easier to deal with than friends and relatives. A little thought will tell you why.
Whilst most people have coped with my vision loss in a very positive manner, some are embarrassed and have no idea how to respond. I have found that you have to give permission to regard sight loss as an everyday event. This can quite often be achieved through gallows humour or some indication that blindness is not taboo. In short, the elephant in the room needs to be addressed. However, the fact remains that many people address you with compassion, sympathy or sometimes derision. None of these are particularly helpful when you are struggling to develop a sense of self and act normally.
Talking about two steps might imply that coming to terms with sight loss is a simple smooth progression, nothing could be further from the truth. It is a process marked with frustration, setbacks, pain and moments of utter despair and isolation. It is a constant struggle to maintain psychological wellbeing and social relationships, living in a perpetual twilight or darkness with no visual feedback is hard work and can be depressing and frustrating. Learning to substitute other senses for vision can be extremely tiring, involving as it does high levels of concentration and mental effort. At this point it is worth saying that it seems that other senses are not enhanced, we just pay more attention to them.
"In addition to this being blind can knock your sense of self and confidence which is reinforced by an apparent increase in clumsiness and poor memory. At a deeper level we all carry within ourselves a sense of who we are and in some ways regard ourselves as the hero of our own story. The onset of sight loss makes any such thoughts incongruous, our bubble is well and truly burst and on top of everything else we have to painstakingly rebuild a sense of who and what we are. The psychological side effects of the onset of sight loss are numerous and would more than justify an article on their own."
Just in passing it may be useful to mention a few of the physical side effects that contribute to some of the psychological issues. Having no visual reference points can cause problems with balance whilst walking in a straight line or taking a corner presents interesting challenges. Having no visual cues and reinforcement, it is very easy to forget where you have put things or what we need to take out with us. The fact that you dream and store new memories in sharp and bright colour causes repeated disappointment and reminders of vision loss. In addition to this the visual cortex works overtime to make sense of what little sight remains, including making stuff up and hallucinations. In the absence of sight, hand eye co-ordination takes a dive as does awareness of where limbs might be (proprioception). Simple things such as these do nothing to improve psychological wellbeing and it is easy to start questioning your sanity.
The majority of the information we take in is visual and this also true for interaction. When someone speaks their appearance, posture, gestures and facial expressions give a huge amount of information which is lost when blindness sets in. This clearly affects the ability to communicate effectively, it is almost as if you have to relearn how to interact with people. However, this can prevent making snap judgements about people and makes you really listen.
Another aspect of relationships is that those around you have the almost intolerable burden of having to communicate very precisely. They can no longer ask you to put that over there as you have no idea what that is or where there might be. They also have a sense of loss whenever they wish to share something visual. Perhaps one of the most difficult aspects is relearning tasks as those around you are tearing their hair out with frustration either because you are so slow or they want to do it for you. Again, this is an aspect of sight loss which is worthy of an article in its own right.
It is clear that the implications of sight loss are far reaching and complex. It also seems that sight loss is in itself the least of the problems that have to be faced. I was fortunate enough to be referred very quickly to Blind Veterans UK. The training, support and comradeship have been invaluable in coming to terms with blindness. This organisation has been, with my wife, absolutely inspirational and vital on the long road back into some approximation of normal life.
Whilst Blind Veterans UK have been key players in kick starting the long process of coming to terms with vision loss, the support of a spouse or partner is inestimable. Their role is hard, gruelling, not what they signed up for and 24/7. In addition they may be suffering bereavement for the loss of the person they originally hitched up to. Managing this loss and helping a loved one with a setback such as blindness must be extremely hard. It is probably as frustrating and painful as having the condition itself, it certainly puts any relationship to the test.
Both Blind Veterans UK and my wife have given me the inspiration and confidence to see blindness as an everyday event, to talk about vision loss to both groups and individuals, fly an aircraft, walk coast to coast along Hadrian’s Wall for charity and generally get on with my life.
Living with blindness is a work in progress and will always be so. The unique nature of the experience for each person it also follows that side effects may well vary both in kind and degree. Bearing in mind the immense and continuous work involved in normalising sight loss it may be incorrect to assume that everyone wants to make the effort. Perhaps this is the most important and first issue to be tackled.
In conclusion, it is not possible to regain what blindness has taken, but new doors can open onto previously unimagined paths. The task of learning to cope with not seeing is comparatively simple when contrasted with regaining psychological equilibrium and confidence. Blindness can be a new start or the end of useful and fulfilled life. Sight loss can either be treated as a great adventure or one can give up and become a victim.