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IN TOUCH – Can you prepare for blindness?

TX:Ìý 22.11.2022Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

White

Good evening.Ìý Can you prepare for blindness?Ìý Last week, one of our guests made the point that however positive a person you may think you are it is very difficult to anticipate the situation until it becomes a reality.Ìý We thought this was an important enough issue to devote a programme to.Ìý Is there advice that can be given?Ìý Steps you can take, the right people to talk to, to prepare you for something which, let’s be honest, would come as a bombshell to most people.

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So, we’ve assembled three guests who are at different stages of this path.Ìý Ten years ago, Amit Patel, who was a trauma doctor at the time, lost his sight, literally, overnight.Ìý Marcia – Marcia Beynon – realised almost a decade ago that she had got problems with her sight but wasn’t diagnosed until 2017 and it wasn’t until she had to take early retirement from her nursing job that she really came out about it.

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But we’re going to start with Pauline – Pauline Mottram – because, although Pauline has had eye problems for many years she got her bombshell, literally, only a few days ago, so, we appreciate you coming on to talk about it so soon, Pauline.

Ìý

Just tell us what you were told by your consultant the other day.

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Mottram

He said that my retinas are degenerating and that he has people in his clinic who have ocular scans half as bad as mine who are designated visually impaired and he said, basically, I’m in the process of going blind.Ìý And he used the word ‘blind’ which I found really shocking, it was like a sort of kick in my stomach.Ìý And I just was sitting there sort of looking out the window thinking – am I really not going to be able to see all this beauty and how will I survive that?

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White

Were you expecting this at all?

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Mottram

No I wasn’t, no, no.Ìý I knew I had problems but the problems they’d always advised me about was retinal detachment and what to do in the eventuality but nobody had ever informed me that my retinas are actually degenerating because I’m such a high myopia.

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White

So, have you even thought about, as it were, preparing for it because I mean that is our theme – can you actually prepare for blindness?

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Mottram

Well, with retinal detachment, if my retinas detach, I can’t really prepare because I don’t know when it’s going to happen.Ìý And when I had interocular surgery for cataracts I was aware my retinas could detach and I contacted RNIB and spoke to them and the visually impaired people in Glossop were absolutely fantastic.Ìý So, I’ve sort of made links with quite a lot of people and then it hasn’t happened so, in a way, I think, I’ve been living in a bit of a fools’ paradise.

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White

And just one more thing before we move to Marcia.Ìý When you left the hospital, I mean, what did you – it’s a daft question but I want to know what you felt and whether you kind of felt you had any support with this?

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Mottram

No.Ìý I mean I told him that I love alone and I have no family and he just sort of looked at me.Ìý They didn’t even give me any leaflets for RNIB or anything.Ìý There’s a footpath behind the hospital so I went up there and sat in the woods and just looked at the beautiful colours and just cried my heart out.Ìý But I just felt like is life worth living if I can’t see all this wonder that’s always been so precious to me.

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White

I think that explains, very clearly, how it feels.Ìý We hope to add some positivities as we go on.Ìý Let me bring in Marcia because I think you freely admit that for a long time you were kind of in denial.

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Beynon

Oh gosh, absolutely and hi Pauline and I’m so sorry to hear your news because it resonates with me deeply.Ìý Two thousand and thirteen I had a really bad headache and I woke up the next morning with what they call floaters in my left eye, the sight had probably reduced by about 70%.Ìý I’ve always been short sighted, so I knew exactly what it was like not to see without glasses.Ìý So, I went to the hospital and they said I had a vitreous detachment and basically it was so bad that I wouldn’t sort of regain the sight in that left eye.Ìý Basically, I carried on thinking well my right eye’s good enough, I can still drive, I can still do my nursing career, which I’d been a nurse for, at that time, probably about 25 years.Ìý So, over the next couple of years I did actually notice a similar thing was happening in my right eye but, again, I kept it from my family until really it had got so bad that about 2017, I actually did go back and then they gave me the news that I’d had myopic macular degeneration.

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White

So, how did you conceal it and why did you conceal it?

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Beynon

I know, it sounds – and I wouldn’t recommend anybody to do this.Ìý I just felt that I didn’t want to be seen as anything apart from me and I felt that if sort of admitted I had this problem, then it would sort of get the attention that I really didn’t want.

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White

No but you had been told that you may lose more or all of your vision.Ìý I mean how do you feel now, if that’s not a stupid question?

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Beynon

Well, I’m a lot further forward than I was four years ago, it’s taken a long, long time.Ìý I felt very isolated and, like Pauline said, the tears come and I thought gosh, how am I going to see this, how am I going to see any of my children, am I going to see my grandchildren.Ìý And I took ill health retirement because I was no longer able to drive to do my community palliative care nurse job.Ìý So, that was a knock as well.Ìý But I have come a long, long way and I want to tell Pauline that there is positivity.Ìý I don’t know if there’s hope but there’s certainly positivity and you can just lead the life that you actually want to lead by gaining access to certain groups and help.

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White

Well, we’ll come on to that.Ìý Let me bring in Amit Patel.Ìý I know you now wish you had had a chance – a time – to prepare for blindness.Ìý Just explain, first of all, just what happened to you initially.

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Patel

Yeah, so I have a condition called keratoconus.Ìý It’s a condition that usually – it doesn’t result in sight loss but it can be rectified using hard lenses or corneal transplants.Ìý And I was one of those rare people that, after having nearly eight corneal transplants, my body was still rejecting, so I would have a corneal transplant, I would have perfect vision – 20/20 vision – carry on being a doctor and six to nine months later, get signs of rejection and go through the process all over again.Ìý And it was only after my eighth transplant that everything was looking great and it was two years after I had my corneal transplant I came home from work, from working in a busy A&E department, went to bed and there was pressure that had built up in my eyes and it literally went pop.Ìý So, I lost my sight overnight without any warning, didn’t feel any different when I went to bed, woke up completely blind.

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White

Which for someone like me, who’s always been blind, I can’t imagine what that’s like, it would be as traumatic as getting me sight back, I suppose.Ìý But looking back, what would preparation have looked like to you because I know that you’ve said it would really have been helpful, the fact that it came absolutely out of the blue, so what kind of things do you wish you’d been able to do?

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Patel

I guess for me it’s very much if I had been able to gather the information I needed, if and when I would lose my sight I’d know where to go to, who to turn to.Ìý Even prepare my family for sight loss.Ìý Or even kind of get my head around the fact that I will be losing my sight and kind of get to that stage in my life where when it happens, I’m calm about it, as calm as you can be but I know where to go and who to turn to and what my next steps would be.Ìý I think because it came out of the blue, for a while I very much – like Marcia – I was very much in denial, thinking well if it went so quickly it’ll have to come back very quickly.Ìý But having the doctor’s hat, I kind of in the back of my head also knew that I’m never going to get my sight back.

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White

Can I ask you what’s helped you most to reach a state of thinking that you’re now living a good life because I know that’s what you do think?

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Patel

Yeah, I do.Ìý I think it’s friends and family and peer support.Ìý I used to wake up, having a bad day, you know, as a visually impaired person things take a little bit longer, you have to find different ways of doing it but you do it and you carry on.Ìý The peer support I have, I can talk to someone else who’s visually impaired and say – is it this difficult, am I doing it the right way.Ìý And they’re – oh no Amit, have you tried it this way, it’s a little bit easier.Ìý And it’s that.

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White

Which is why Pauline, you got that bombshell and you live alone don’t you.

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Mottram

Yeah and I think that’s the part that was frightening me most of all.Ìý I’m also new to the area where I’m living now and because of covid I’ve not been able to establish much of a network – I didn’t know any people when I moved here.Ìý So, I am very socially isolated in this place and that’s made it more frightening.

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White

Marcia, at what point did you begin to feel that you were coming to terms with what was happening?Ìý I mean you still have useful vision and it hasn’t happened, so I’m wondering what your state of mind is really.

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Beynon

Last year I sort of hit a brick wall.Ìý My night vision is very poor and you know I am lucky enough to have some sort of vision in right eye but overall, it is still quite poor.Ìý I rang the Macular Society, I just went online and I thought I’ve either got to go over this wall or else I’m really crashing into it.Ìý And I’ve been lucky enough to have that close knit friends and family, community to rally around.Ìý But, yeah, last year was the point of thinking this is sort of actually happening and I wasn’t ready to accept it and I don’t know if you can accept it, I think it’s about adjusting.Ìý Can you ever really accept it?

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Patel

Absolutely, I do a lot of work with people who have been diagnosed with sight loss and it’s that stage where you are in denial for such a long time.Ìý I think it’s once you get to the stage, within yourself, to think well, okay, I want to move on, then it’s easier to get the help.Ìý When I lost my sight, I was angry.Ìý I don’t know who I was angry at, I was just angry.Ìý And it used to annoy me when sighted people say – Oh, I can imagine what you’re going through.Ìý Well, you probably can do for five minutes when you close your eyes but you can open them up again.Ìý So, it was very much when I reached out to the RNIB, I reached out to local charities and I said this is where I am, I really need to be able to talk to someone, I need help, I need that help and support to move forward and not be angry anymore.Ìý I got the help, I got the support and I learnt well okay, this is my life, this is what my life is always going to be like, I want to control where my life leads, I want to be happy again, I want to put that genuine smile back on my face again, not for people around me but for myself.

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White

Can I just bring in Pauline, because I’m wondering – you’re hearing a lot of advice but quite a lot of positivity and I’m wondering whether it helps because our whole question, in a way, is people will say to you perhaps prepare yourself for it, I’m just wondering whether any of that kind of gives you a way forward?

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Mottram

I was thinking as Amit was talking that there is a grief process and I think that’s a part that other people find quite hard to deny, that they want to put a sticking plaster over it and say – oh you know look at Peter White he’s blind and look what he’s done with his life – and sort of things like that.Ìý Fine art has always been terribly important to me and as an art therapist for many, many years and visuality is important, so, that, to me, is a huge loss.

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White

I want to pick up, actually, on something you just said.Ìý I wanted to ask about this and you’ve given me an opportunity.Ìý There was a time when I thought, doing a programme like this clearly you do talk to people who have lost their sight or have been threatened with losing their sight, and I used to think, you know, it would be really helpful for people in all your positions – and not so much Amit now – but to meet people who’ve had long experience of blindness, someone who is doing okay and having a good life.Ìý But as time has gone on, I’ve started to question myself about that and whether people like me are actually really quite annoying to be reassured by because aren’t you tempted to say – well, it’s alright for you, you’ve been blind all your life and so you don’t know any different.Ìý So, I would be really interested to know what you think about that.Ìý Can I bring in Marcia?Ìý I mean would you find that encouraging or would you find it a bit frustrating?

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Beynon

To be honest, Peter, I think it’s very, very inspiring and encouraging.Ìý You know, if I come across somebody like yourself that has never had sight, then it just makes me feel that I’ve been fortunate to have had sight.Ìý But I do understand what you mean because some people would say – is it worse to have lost something than not to have had it?Ìý But, for me, no, I find it encouraging actually.

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White

Amit, did you want to meet other blind people or not?

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Patel

I did, I did.Ìý It was very much blindness was a new world to me.Ìý I didn’t have any blind friends.Ìý The only blind people I saw were my patients in hospital.Ìý So, for me, it was learning to live as a visually impaired people but how do you do it.Ìý Personally, I needed to be surrounded by people who live that life, who know what they’re doing and can give me the help and the advice.Ìý The first time I listened to In Touch, it was encouraging because I thought to myself – well, I don’t have to live the life that I thought a blind person lived, I can live the life I want to live and I’ve got the same opportunities and I can do what I want to do.

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White

Can I just ask Paulin because the problem for you that I imagine is that you haven’t received a definite piece of news, you’ve received something that might happen.Ìý You have to think, well I don’t want this to happen but should I concentrate on it or should I get on with life while I can.

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Mottram

He was clear, Peter, it is going to happen, he said I am going blind…

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White

Right but people throw that word around, you know, and it may be a degree of… I mean I’m just wondering how certain you can be.

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Mottram

…or what timeframe he was talking about, I mean he didn’t give any timeframe at all.Ìý To pick up on what people were saying, you know, sort of my first instinct was where do the visually impaired people meet around here and how can I find that out.Ìý And I’ve found it quite interesting when I’ve been phoning up different places trying to find out, the response has been – oh, there’s no money for community care, you’re not going to get anything you know.Ìý And that wasn’t my request at all, I wasn’t saying I want carers to come in and dress me in the morning, I was saying where are the visually impaired people so that I can learn from them.Ìý And that, I’ve found, really difficult.

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White

I wonder, in that case, we could spend a little bit of time just wondering where people did get help from.Ìý Marcia mentioned the Macular Society because Marcia has a macular condition.Ìý Amit, who did you get help from?

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Patel

It was Sight for Surrey.Ìý So, as soon as I was registered, I had a visit and this gentleman came round and he sat down, he said – Look Amit, this is the services we can provide you with – we lived in Surrey at the time, we moved to London a few months after I lost my sight because that’s where my wife works and my wife researched to see which boroughs had the best services for visually impaired people and would you believe Newham came out the top because the cash injection from the Olympics.

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White

So, you’ve had a few bits of luck then really?

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Patel

Sometimes it is luck, sometimes you have to kind of go and do your research but it’s hard when you’re visually impaired.Ìý I was lucky that I had my wife who can get on the internet and actually research this.Ìý But contact your local authorities or you can contact the RNIB, they will – they should be able to help you with the local clubs and the local charities around where you live.

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Mottram

I’ve contacted the RNIB today and they’re going to be phoning me back and I contacted another more local service and they’ve got me on their waiting list for counselling, I don’t quite know what that involves but they’ve got at least a two week waiting.Ìý So, you know, I’ve got that as sort of something on the horizon.

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Patel

Pauline, two weeks – two weeks is good, two weeks is very good.

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White

Marcia, I think you had – did you have counselling?

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Beynon

Yes, I did actually, Peter, I went to the Macular Society but like Amit I did contact the RNIB, it took me a long, long time and it’s only in the last 12 months that I’ve done it.Ìý And I’ve also contacted Sight Loss Cymru, Wales which they’ve been excellent as well.Ìý And I’m going on a course with the RNIB regarding technology.Ìý I’ve recently been registered severely sight impaired as well, so our local authority have been in touch with me to do sort of kitchen assessments and lighting.Ìý So, it is all coming together.Ìý I know I’ve taken a long time to get to this place but if I was to answer a question – can you be prepared – I’m not sure you can be.Ìý I think it’s such a life changing thing that I’m not sure any preparation can actually prepare you.

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Patel

It’s that thing of the unknown.Ìý There’s only so much you can prepare yourself but if and when it does happen, you’ll, hopefully, have someone to turn to or you’ll have the needs and the skills.Ìý But, like Marcia said, it’s something I don’t think you can quite prepare yourself for it but, hopefully, if you’ve got some yellow ducks lined up you know where to go.

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White

And Marcia, top tip?

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Beynon

Top tip Pauline – this is what’s happening, hit it head-on, don’t hide it, your sight doesn’t define you and there is help there, people really do want to help you, as long as you sort of want to be helped.

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White

Can I just ask you, Pauline?Ìý It’s still very early, I mean I think this is less than fortnight ago, wasn’t it, do you have a plan?

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Mottram

Well, what I’ve been doing is trying to research.Ìý I got the letters off the consultant because we’re not routinely given them.Ìý I’ve arranged an appointment with Specsavers because they didn’t get copies of the letters from the consultant either.Ìý And I’ve been trying to research all the sort of community groups that are around of visually impaired people to make links with them.

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White

Well, thank you for coming on because it’s fairly rare to be able to talk to somebody so soon after a diagnosis like that.Ìý And Marcia and Amit, thank you both very much as well.

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We’d very much like to hear your reactions – listeners’ reactions – to what we’ve said and strategies that have helped you, if you’ve been in this situation.Ìý You can email intouch@bbc.co.uk, you can leave voice messages on 0161 8361338 and you can go to our website, that’s bbc.co.uk/intouch.Ìý

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From me, Peter White, producer Beth Hemmings, all our guests and studio managers, Tom Parnell and Mike Smith, goodbye.

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