Sunny days and getting around - James

It's been such a stop and start summer for me with regards to living with Retinitis Pigmentosa. I find it’s easier to cope with RP if I know what the weather's going to be like with a bit of certainty from one day to the next so that I can make minor adjustments to my travel plans, even if they're just around town. I struggle mostly on very sunny days when the contrast between shaded areas and the open sunlight is jarring. I need to stay in either state, as flitting between the two is disorientating and possibly hazardous. This is easier if I'm in familiar territory, like Sheffield in general, but I've been away to Bristol and Newcastle this year where I’ve had to use my guide cane (halfway between the symbol and the long cane) to make sure I don't twist my poor ankles on curbs and cobbled streets or plunge myself down a quaint little flight of steps from a cosy nook in an immaculately designed corner of a trendy high street wine bar.

No, that's a lie, I don't go to wine bars, I like real ale pubs with gruff old men (me being one of them) guffawing about crop rotation. You'll usually find me in Shakespeare's on Gibraltar Street which I find initially very dark as I go in, but the giant blackboard which lists all their guest ales is an absolutely indispensable tool for finding out what fermented vegetable drinks they have on offer as the pump clips are totally out of my visual range. The brightest and least intimidatingly lit pub for me is actually Gardeners Rest in Neapsend, but that's slightly harder for me to get to and I sometimes feel uneasy wandering through the uneven industrial landscape.

I've learnt over the years just to take things slowly, even though I'm a fast walker. I guess "slowly" to me means the measured charting of the routes I take and what dangers I'm looking for directly up ahead. I keep an eye on people who look like they might stray into my path at any moment, especially those who bury their heads in their mobile phones while they're walking and perhaps unfairly hope that everyone else dives out of the way for them. I scan the edges of pavements that aren't well defined so that I don’t step out cluelessly into oncoming traffic - the areas around Fargate and Barker's Pool are especially tricky for that reason. I always keep a steady watch for bollards and fence posts or anything else that I might painfully clip my arms or genitalia on. I'm working all the time with RP; I'm calculating and deducing everything and constantly monitoring my surroundings, which can be quite exhausting on a busy day.

My Independent Journey - Betsy

For the Ramblers Association Annual General Meeting, I have to get myself across town to Norfolk Park’s new Centre. I’ll show them what I can do when I don’t have a guide.

Now, let’s see what I need. I’ve got plenty of time but will these new boots cripple me? Never mind, the brilliant sunshine and crispy air beckon and I’ll wear my new fleece walking pants. No sense getting cold, and I’ll need some lunch. Come on, old girl, gather yourself up in a hurry and start trekking. Just put the handbag in the rucksack. Never mind extracting bus pass, etc. I’ll forget something so bung it all in.

Ring for the lift. Come on, come on, I want to be off and I’m not too sure just how long it will take me to walk from Stannington to Norfolk Park. Feel for the ground floor button. It’s one above Hold Door. Out of the flats and down across the car park. Make sure I don’t turn my ankle on the rough stone surface. No sense in bungling things before I get going. Oh damn, I forgot to bring down the talking book I wanted to post in the box which is just in front of me. Oh, well, tomorrow will have to do. Now to cross the street. Shall I chance it here or closer to where it turns off the main road? Be safe. Go to the junction so turning cars can see me and my white stick. Careful at the curbs.

I’ll open up and swing down Stannington Road at my natural pace as I know the curbs well. Keep my ears open towards the main road however, to assess the traffic. For the moment I want to stay in the sun but I will have to cross over to go down Hollins Lane to Rivelin Bottom. Oops. I almost bumped into that lady. Keep my mind on the job. Now’s the time to cross. Get the stick into full view and go for it. Nothing coming up and the one coming down is well up the hill. Where’s the path leading to the pavement? No sense in walking through dog muck on the grass.

No trouble dropping down to the bridge, but now the fun begins. Go to the crossing and tune in to the sounds. Get going. I see the movement of someone crossing right at the intersection so no traffic. If there is, he or she will get hit first. Stop at the island in the middle and look the other way bur don’t waste time getting over. Phew, time to take off a layer. It’s all up hill now until I hit Walkley. From then on it’s a doddle until I get to Granville Road. Hope my feet don’t hurt by then. Tuck my jacket safely inside the sack.

Uff, it’s a hot pull. Just keep going. Keep breathing evenly. No dust bins in the way today. Thank goodness it’s Sunday. Now I’m up the first long pull. Stride through the gap into the next road. It’s so much easier going by the footpath. Too steep for cars so they have to go all over the place to climb up. Keep going. Don’t stop. Shorten the steps but keep going. There don’t seem to be many birds around. None are singing from the TV aerial - that is such a favourite. No smells of cooking from the houses. Are they all at church, or not up yet? Here’s a car that has been out fetching the papers. It smells of hot oil. Get up this final patch of road and I’m on the level. Hurrah! But keep my guard up. Car doors are often open here and kids’ bikes sprawl across the pavement. Where’s the cat that comes out meowing?

This road coming down from Crookes is a tricky one, especially if I try to cross before the lights. No hope today, too much traffic at intervals so I can’t safely judge the gaps. Wait for the bleeper when the lights turn and cross over into South Road. Mind the old boy. He doesn’t look as if he can get out of the way of my long cane. Don’t mow people down. Netto is open. Press on, I don’t want anything today. At least the shops which put their goods out on the pavement are closed and I don’t have to wave through them. One of these days I’ll report some of them. What a job if you can’t see anything. Guide dogs love weaving about. It’s a change and a challenge. I will go down Fargate, the most challenging course in Sheffield.

Just keep going as I come this way often. Oh hell those branches overhanging Commonside. My face stings but nothing in the eyes. And why are these dust bins out? Some are overflowing. That one looks abandoned. Never mind, just keep going. Yippee,traffic is crossing at Crookesmoor Road. By the time I get there the lights will turn and I can cross. Watch for cars coming around the corner. Ouch, I’ve just turned my ankle on some hole in the middle of the pavement in Barber Road. Retrieve my white stick and move ahead slowly but steadily. It’s the same ankle I turned badly three weeks ago. Let it wear off but watch traffic turning around the corner of Crookesmoor Park. Shall I go through Western Park? It’s a lovely day. No, crossing by Children’s Hospital towards the Octagon is worse than crossing at the roundabout. Thank you. The young man has pushed the buttons and is waiting to cross until the lights change and I am safely over. Usually the students run for it. Seeing the 'wait' sign is particularly difficult here as someone put advertising stickers over the glass. No bleepers and twirling knobs here to assist me, so get a move on and give a friendly wave to the cars.

I’ll weave as usual past the entrance to Jessop’s around two corners, past the Sheffield Royal Society for the Blind on Mappin Street and into West Street. Good heavens, music is pouring out of the building and tambourines are rattling. Much livelier than during the week. Wonder who it is?

Hello there. Who is it? Eunice, what are you doing here? Parked your car at SRSB and going to to John Lewis shopping. Come on, then. See you at SRSB tomorrow. Let’s cross West Street here, the lights are with us. Come on the traffic is moving across. So what if a car is coming along West Street, he has to stop. I know you don’t trust motorists, but this is daft. Let’s get across before the lights change. You ought to get out of your car more often and walk like we do. Come on now, we can cross Rockingham Street. Just shut your eyes and come instead of standing there staring at all the cars. Here’s John Lewis so I’ll see you tomorrow when I come for those photocopies.

Careful coming down to Fargate. Sunday shopping has started and cars are streaming around the corner into Leopold Street. I can get across just before that bus gets up here. Now, careful through all these obstacles. Get over towards M&S but watch out for their signboards. Phew, that Body Shop or whatever it is smells strong. Keep on going straight down High Street. What is this couple going to do? If I push past I might hit something. Hell, they are slowing down. Get over. Right, make a break for it and hope they continue looking towards the shop. Perhaps it would be a good idea to stop at the Interchange for the toilet. Look out for the change in pavement level approaching Platform A. Where is the ramp down into the Interchange? Wrong again, it’s on the other side of these cycle bars. Ouch, my toes are hurting. Too much walking on paved surfaces. Now where to cross to Suffolk Street so I can get to Granville Road? I think it has to be along Platform D and then cross over to the Railway Station. Next turn right and follow Suffolk Road. Mind the traffic and tram lines. Is that bus going to stop? At last I am climbing Granville Road and my sore feet are forgotten. Here are the park gates. Notices everywhere but no opening. Don’t give up. Walk to the far side and sure enough, here is a small entrance. Now where to go? Excuse me, is this the way to the Centre? "Come over here luv and walk right up the middle. You can see the Centre up there on the right. Ah,well ah, anyway, just keep going and you’ll get there in ten minutes". Thanks pal, and I am off. Nice aristocratic drive. I wonder where it used to go? Lots of kids playing around the Centre and here is an entrance. Do you know where the Ramblers’ meeting is? Oh, hello Terry. Am I the first? Yes I’ve walked all the way from Stannington and I’m hungry. I’ll take a seat and eat my lunch. When the time comes I’ll tell them of my journey. I too have enjoyed a ramble.

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.