Introducing James

Hello there, my name is James and I’m a 32 year old sufferer of the hereditary and degenerative eye condition known as Retinitis Pigmentosa (RP). As is common with RP the main symptoms I experience are tunnel vision (although I’d describe it more as a collection of interconnecting blurs that block and distort light shades and colours, blending them confusingly together, rather than as a simple long dark tunnel) and night blindness. I’ve also started to lose my central vision (I think the consultant at the hospital described it as “macular degeneration”) and develop cataracts. Oh and I’m also short sighted, but that seems to be the least of my problems now.

For many years my condition appeared to linger at a certain stage until around 2008 when there was a noticeable step in the deterioration and I found myself struggling with such things as reading normal print and recognising faces. At that time in my life I’d just ended my career as an administrative civil servant due to depression and erroneously assumed that this sudden increase in loss of sight might somehow be related, but after a quick trip to the hospital it was confirmed that my RP was just entering another stage in its evolution. Since then I’ve had to adapt to another set of visual impairment problems which, up until then, had mainly included night blindness and what can now retrospectively be described as only the beginnings of tunnel vision.

I’ve started wearing my spectacles less and less as they no longer help with reading or seeing fine details (the small amount of focus they give me is almost negligible) and I have to use strong magnifiers to read even large print. I’m finally able to start investing in better technology including magnification software for my laptop and a Kindle so hopefully I’m on the positive road to managing my life and eye condition better.

Since I’m quite introverted and self conscious I often find that the process of adapting to sight loss can lead me to draw attention to myself which I’m personally not too keen on, therefore I’m constantly trying to find a balance between doing what I need to do to get by in a visual world and not finding myself distracted or disorientated by my own social phobias and hang-ups. As well as RP I’ve suffered long-term with depression (although in contrast I’m quite a positive person so I think the depression is triggered by external forces and controllers rather than my own internal outlook) so finding a path through life that complements both health disorders is an experience that can either be described as uniquely challenging or nightmarishly Kafkaesque.

These experiences I hope to chronicle here in a positive and constructive manner.

Learning about screw tops on wine bottles, a good laugh! - Betsy

I was used to opening wine bottles with a cork screw, first fumbling around the drawer amongst all the kitchen utensils for something to loosen that horrible metal covering and then struggling with the cork screw opener until finally 'pop' as the cork reluctantly relented. I had not encountered a screw top yet.

Some years ago we were in the Lake District at Windermere Manor when I bought a bottle of wine while waiting for our dinner. After sharing my bottle with friends and continuing to drink at the meal, I knew there was some wine left when we adjourned to the lounge to await the evening entertainment.

I had not poured the wine myself but now as we sat at a long table, I knew it was time to finish the wine, yum, yum. So I decided to pour the remaining wine myself and tipped the bottle gingerly over my glass, a hit and miss exercise at any time.

With the bottle tipped up it seemed as though nothing was coming out so I shook the bottle vigorously, determined to get my wine. I was mystified, however, as nothing seemed to be happening and finally a voice from the other end of the table said 'Remove the screw top.

I felt the bottle and sure enough, something unscrewed in my hand and wine began to come out. As I giggled about this, much laughter began to come from the far end of the table from those who had been watching and waiting to see what would happen.

I finally got my wine but who needs evening activities while such entertainment is taking place? Needless to say, I have not had this difficulty again. Just keep laughing!

Betsy

Flat out - Betsy

The words 'Flat Out' can have various meanings, like I am walking flat out to get to my destination, or I am flat out with tiredness or for being boozed up, hopefully on my bed rather than on the floor. My tale involves a bit of each of these.

It was Sunday and I was looking forward to joining some friends for a ramble. Now we all know that the Stannington half hourly buses are often unreliable so it is wise to walk down to Malin Bridge where it may be possible to get either the bus or a tram. Thus I decided to walk down and set off about 7.30am.

It all occurred about 7.45am when I was about two thirds down the hill. The birds were singing lustily but as you know, in January sunrise is after 8.00am so there wasn't much light. But why should I care, why should I worry? I had walked this route many times.

Suddenly my stick, which was in my right hand, hit something metallic, like an empty pail. Naturally after a brief curse I was concerned to get my balance and come to a stop. For some reason that I still don't understand, both feet came together and I found myself pitching straight forward. Funny, I thought, I am falling down. Then I was flat out on the sidewalk (sorry, pavement), pointing downhill with my left arm stretched out ahead of me. Oh dear, would I make my ramble!?

There was no-one about, not even a light in the windows of the terrace of houses so there was nothing to do but pick myself up from this most unflattering position. My hat had not moved, but my rucksack had helped thump me down.

I stretched my arm and it felt in one piece so I examined my hand which, as you all know, should be scratched as my thumb was throbbing. But no, no broken skin so my waterproof must have come to my rescue by covering most of my hand in the fall - the one service it did for me all day.

Then I felt the bruise at the top of  my arm, just below the joint and wondered how this had happened, being on the top side of my arm. Then realisation struck, my walking stick which was folded up and attached to my rucksack, took this opportunity to get a whack at me in retaliation for all the abuse I give it during rambles. The handle had swung forward with glee against my arm. I suppose I can't really complain.

Having restored myself to an upright position and confirmed that I had probably not broken anything, not even skin, I wondered about looking for the culprit that had tripped me up. But no, I thought, if I found something I would probably wake the neighbourhood in my retaliation. So I continued down the hill, using my usual inefficient vision and inefficient white cane technique, but going a bit more slowly and while I missed the tram, I caught the bus.

I re-walked my journey yesterday, more than a week after this event, just looking around in the bright afternoon to see if the culprit was still around. One item caught my eye, a very sorry looking sign, one of those triangular 'beware of road works' signs on short legs, sitting at the roadside, looking in the wrong direction. Was this the culprit?  However it looked so sad that I didn't have the heart to take a swipe at it.

So take care, everyone, you never know what is out to get you and 'ouch', it is still painful to scratch the back of my neck!

Cheers,

Betsy

Welcome to the SRSB Blog

Welcome to the brand new Sheffield Royal Society for the Blind blog, a space for SRSB clients to share stories about living with sight loss.

By focusing on day to day life, often with a dash of humour, we hope to raise awareness of the issues faced by visually impaired people. Seemingly simple tasks that many of us take for granted can become a real challenge when you can't see what you're doing, as some of our writers will explain!

We also want to provide a space for visually impaired people to share their writing with the world. If you'd like to contribute, please contact blog@srsb.org.uk to find out more.