This post is by guest blogger Joan Winer
What is it like to become visually impaired?
Like most things in life, we as human beings are inclined to take a lot of things for granted. We look at a man with a white stick and know he is blind but, how does he cope with it? How would life change for you if you could not see?
There is now, in society a great deal of people being diagnosed with “Macular Degeneration” who have never heard of it. Neither had I! Well what it means is the loss of central vision.
This is my story and how things developed for me.
At thirteen I had to wear glasses for distance. In my sixties it was discovered that cataracts were developing in both eyes, which is a clouding of the lens. It was not until I was in my seventies that the time was right to remove them, the usual practice being to do one eye at a time and so, the procedure took place on the left eye and the cataract was removed.
Removing a cataract is a routine procedure, with the success rate being exceptionally good. I had heard stories about this miracle and so, you can imagine the disappointment the next day when the dressing came off and there was no change. On my return for the check up with the consultant I was told that there was no way they could see the back of the eye to establish whether the Macular was damaged. It was diagnosed as dry macular degeneration, which left a small black smudge in the middle of the eye. This in time would become bigger, the rate of progress not being clear, but once it reaches the stage of wet macular, there is evidence that injections help to stave the progress, but unfortunately is not a cure. I had nine injections over fifteen months but, because of other health issues I elected not to have any more.
Two years after the first procedure, I still had a cataract in the right eye, but not wishing to risk the loss of anymore sight, I was very reluctant to consider the operation again. My GP suggested that I see a private consultant at the surgery so I could express my concerns and ask questions. He gained my confidence, however he advised that he could not guarantee that there were not going to be any further problems but he was confident enough to believe that he could not see any signs of problems at the back of the eye. I therefore agreed to the further procedure, and the miracle happened … no more glasses, except for reading! However, unfortunately there was evidence of dry macular in that eye as well.
As explained, there are two stages in dry macular degeneration, which to date has no treatment. However, the Macular Society has helplines and a programme of raising funds for research to try to find a cure and It was through the society that I learnt about help self-funded groups, run by volunteers.
How do you live with it? Realising that you will have do things in a different way.
Yes, it is frustrating, yes you could scream about it, none of which helps to deal with it. The thing to do is adjust to it.
Life does not stop because you’re visually impaired, you’re still the person you were but no one can tell by looking at you that you cannot see. It does get a little wearisome to have to say “sorry, I cannot see that”, which is where it can be useful to join a group to learn from others about particular ways of dealing with something that is impeding your life, and helping you to cut corners during the adjustment process.
The following are tips for coping with the condition from my personal experience:
- Learn to adapt to the condition.
- Be patient and find alternative ways way to do things
- Mark pairs, such as shoes, with coloured stickers in the heels.
- Be orderly, if you can remember where things are, memory can help replace sight when trying to find things.
- Join a support group
I now lead a group at Redhill, with meetings taking place once a month. We have an allotted time to share information, tips, moans, take part in quizzes, or just to let off steam. Occasionally, experts come to keep us informed. There are many gadgets available and these are demonstrated without the pressure to buy. We have speakers on general topics of interest all geared towards the visually impaired members, so obviously no slides! We encourage family or friends to join us and we have volunteers who help to make tea etc … if it was left to us it might not make it to the cup!
One of our recent discussions, surround the lack of consideration that is given to product packaging for those who are visually impaired. Removing it is difficult enough with one layer, a bone of contention when there are three, as it is difficult to see where the openings are. Then there are flip tops, screw tops or even packaging that prevents you getting to the flip top because it is sealed and must be unwrapped before you are finally able to flip it open!
Other topics or discussion, which cause us difficulty, are items dropped, especially tablets, stepping off kerbs with safety, pavements not being repaired and potholes not filled, as well as difficulty reading letters, newspapers, books, labels, and instructions on medication. There are so many things that you did before, without thinking about it and sometimes you feel that your independence is slipping away. The condition can also lead to a loss of confidence to go out alone, which leads to isolation.
Eye problems can also bring with them hallucinations, some of which I understand are pleasant images, some of which are frightening and can cause people to feel like are losing their minds, but it is reassuring to know it is the eyes creating these images!
Groups are not for everyone but if you do not want to live with it on your own, you will get a lot of help from joining a group of likeminded people. Despite the negative aspect of the condition, there is a funny side to some of it which we can all share a laugh to!
It was recently said to someone at the group that they made a comment about the sound on television and was asked why they did not use subtitles, “Cannot see them!” they replied. A good example of why there needs to be more awareness and support for those with visual impairment, particularly as Macular is not confined to the older generation, there are many younger people, some with young families battling with sight loss.
Sympathy will not help us or make life easier, but education, awareness, understanding and involving those impacted will.
About Joan Winer
Joan is a retired qualified bookkeeper, a lover of music (from her era!), the theatre, scrabble, organising, fundraising and being involved. She has been heavily active and successful in many help and social groups over the years and is interested in the welfare of others. Joan has played bowls for many years, taking on the role of Treasurer for nine years and Chairman for one year, as well as being Ladies Captain and secretary.