My cousin Des and his wife, Sonja live up a mountain in the glorious north west of Ireland. Here they are on Mullaghmore Beach a few weeks ago with Paige, Des’ guide dog, Teddy the rescue sheep dog (who has also also his sight) and Paddy the Yorky. Not present are Buster the tabby cat who will go for walks up the mountain with you but does not like beaches, and ‘Black Cat’ who is now very aged and does not like going for walks anywhere.
Des has an inherited condition called ‘Late onset retinal degeneration’ – caused by a gene defect which seems to be reliably passed down the generations. I first wrote about him back in 2019 in a post called Word Pictures but since then his sight has deteriorated further and Paige, his gentle golden labrador guide dog, has joined the family party. Meanwhile he has also not only become expert in the huge range of visual aids enabled by our on line life, but gives occasional talks/writes pieces about living with very restricted vision – and how sighted people can be most useful to those who cannot see so well.
In this piece he takes a purler over Paige….
‘Hurry up!’ I thought.
I was in a rush to cross the landing to finish dressing. Suddenly I crashed to the floor, my head snapping back as my forehead hit a nearby door frame.
I had tripped over my yellow labrador, Paige. Paige is exactly the same colour as our pine floorboards and had been sunning herself on the landing until I flung myself across her. A nasty shock for a dog!
Blood trickled through my fingers as I held my hand to the gash on my forehead. Paige took one look at me and galloped down the stairs. Sensible girl, she’s a guide dog and is definitely not trained in first aid.
Why did I not see her?
I am partially sighted. I have an extremely rare condition called Late onset retinal degeneration. It is not the more common retinitis pigmentosa, although it is part of the same family and shares many symptoms. Until very recently I was the only diagnosed case of Late onset retinal degeneration in the whole of the island of Ireland. It means that the cells in my retina are dying off due to a faulty gene. Eight years ago I could drive safely, now I can’t see my dog on the floor. I now have no central vision and my peripheral vision is blurred. It is dark and indistinct and is becoming more so as my sight deteriorates.
My right eye is worse than my left and both continue to deteriorate steadily – so I already know where I’m going to be next year. I don’t think about it often.
An ever changing world
Progressive sight loss means my reality is constantly changing. What was safe last month isn’t so this month. This was my second fall in a couple of weeks. The last time, I was leaving a railway station and I tripped over a concrete bump stop designed to prevent cars encroaching onto a pedestrian area. I didn’t see it and went flying but that time only picking up scratches, not stitches.
But having got over the initial shock of these incidents, I have to rethink how I move around. This means that they stop being one off accidents and become life changing – and I have to adapt – again…
People with vision problems are very good at finding different ways of doing things. We have to be. Otherwise we give up and fall into a depression.
How to deal with the immediate problem of Paige and our floorboards?
What to do? Paige will stand on the ‘Up’ command but I cannot go around the house calling ‘UP UP UP UP UP’ on the off chance that she is lying in front of me. I need to train her to get up whenever she sees me coming.
I began by getting her to lie down, then I walked away and came back saying ‘up’ and giving her a biscuit when she obeyed. After a few sessions, she got up without the command. Now I have to train her to do it without the biscuit. Otherwise she’ll be for ever throwing herself down and leaping up in expectation of food. She just loves her treats.
By retraining my dog and being a little more careful, I can manage fine at home.
But how about outside home?
It’s more difficult out in the big bad world. Paige is a lovable, highly intelligent guide dog and she’s brilliant at recognising kerbs, steps and other obstacles but there’s not much she can do about broken pavements and the like. So I have to learn to pick up my feet and slow down a little.
We live in a visual society and when sight goes, virtually everything has to be done differently. Think about it. If you couldn’t see….
- How would you make a phone call?
- How would you buy a carton of milk?
- How would you travel to the doctor?
- How would you recognise friends?
The list goes on.
People who have lost sight are the best in the world at finding workarounds and I’m proud to be joining that group. There is always another way to do something but to find it can be hard, tiring, frustrating – and ultimately depressing.
Beating the barriers
Visually impaired people, like everyone with a disability, struggle to fit into a society which considers them broken. Society is designed for those who are mentally ‘normal’ and physically able.
I constantly battle against barriers designed to prevent me living life: inaccessible banks, web sites that don’t work with screen readers, footpaths without definition between them and the road – and service staff who ignore me and will only talk to my companion.
I am constantly surprised by how often I feel ‘got at’ and if this happens often, I find it very difficult to maintain my self respect. Indeed, it is downright depressing at times. I’ve been lucky to have access to counsellors who have helped me out of this darkness.
On the other hand, so many people go out of their way to help. Almost all are brilliant about asking what I need and do not assume they know best. I’ve had many lovely chats with people, mostly prompted by the girl I fell over (and fell for) back at the beginning, Paige.
Des and Paige striding along the streets of a rather soggy Sligo.
If you wish to contact Des please do so by leaving a comment below.
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