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Hi, my name is George Abraham and welcome to this edition of Eyeway Conversations. My guest today is Simon Mahoney from the UK. He is a citizen of or rather he lives in Ashbourne in Derbyshire. Welcome, Simon, to the show. Thank you, George, it's good to be here. So Simon, you were telling me that you started losing your eyesight when you are about 63? Or 64? What was your response? And how did you deal with it?
I don't think my response was usual. Of course, I experienced the same horror and terror that everybody else does. But I was very fortunate. In my early years, I was in the Royal Marines, which basically gave me the view that you always need to challenge what is possible, which gives you a certain attitude to life. And secondly, as a social worker, psychologist, teacher, I had a lot of knowledge about what happens when people are faced with disaster. So in a sense, I could predict, to a certain extent, what the emotional roller coaster was going to be like. And what I did was I created a set of rules for myself, which I called the rules of engagement with sight loss, to help me keep a steady when things are getting a bit wild. I mean, it had things in it, like perceptual sight loss, obstacles, an opportunity to find solutions through improvisation, adaptation, and eventually overcoming the problem. It was about organizing my life, it was basically setting down rules, which would actually allow me to live with increasing fight loss. And I basically worked very hard at connecting what was going on right from the beginning, even though it was, as I say, quite frightening. But I was fortunate I was picked up very quickly by within two years by an organization called Blind Veterans, which is an organization for ex servicemen and current servicemen who are losing, or have lost their sight.
What was the kind of training that you got from Blind Veterans?
A lot of it was practical, but most valuable bit was being with other people with the same problems. And there was an awful lot of peer group support going on. For example, I had the idea that instead of putting toothpaste on a toothbrush, you put it straight in your mouth. When I shared that idea with people, they thought it was a great idea. Other people had the idea of having high sided bowls to eat out of, so you weren't chasing your food all over the table. And that was an idea I've set for myself. So there's a lot of swapping of notes, and sharing of tips. And basically sharing what we we'd already learned before we got blind back since. And the main thing was, of course, that you realized you weren't on your own. And the greatest thing with Blind Veterans is that things get put in perspective. You know, when I got there, I learned about a young rifleman, who was only a teenager, he'd had limbs blown off, and eyes blown out in Afghanistan. And, you know, to think of a 19-20 year old, having that happen to him, and how he gets on with it is really quite sobering. And when you hear that he's actually getting on with his life and making a good first of it is actually very humbling. And you then realize, actually, all what's wrong with me, is I can't see. So get a grip, stop mourning, you know. So, Blind Veterans was useful. In the sense it taught me some basics skills. It taught me, that I'm not alone, which I think is incredibly important, because you can feel very alone with sight loss. It also taught me a sense of perspective, in the sense that other people are so much worse off. And they've got multiple problems and all that's wrong with me is I can't see.
Simon, you are a family man. You were married and you have children? How did they kind of respond to you when this change happened with you?
My wife found it very, very hard to adjust to it. She was rapidly becoming disabled herself. In the end, I was her legs and she was my eyes. I mean, it was basically that, and it worked very well, actually. But she found herself horribly embarrassed when she would say, Oh, you see what I mean? Or why don't you look what you're doing. Or if she would come in, I'll be typing in dark, no screen, no mouse, just a keyboard and a tower. And no lights on I'd be tapping away quite happily. She would come in and say, oh, you're sitting in the dark. Can you see what you're doing? Do you want the lights on? And then there'd be silence. Oh, my God, she said, I'm so sorry. I've done it again. She used to get really embarrassed by that, I mean it didn't particularly bother me because that was one of my rules of engagement. Do not be backed by people use the language because they can't help it. And when people say I see what you mean, or in view of or get a focus, they get horribly embarrassed. Doesn't bother me. Because I quite deliberately use that language myself, I will say that something is blindingly obvious. And people will, you can almost hear them shuddering, thinking what's he on, you know. But as far as I'm concerned, I just want to make my sight loss a non-event for people. My wife found that very hard. I think the hardest thing she found was, she could only imagine what it was like for me. But as far as I was concerned, it was okay, I was getting on with it. It wasn't anything like as bad as I imagined. But for her, it was the ultimate horror because she had very good eyesight. She couldn't even begin to imagine what it was like. So for her, it was just a constant horror show, really. And she, even towards the end, she never really got used to it. And she used to say to me so often, as my skills improved, I can't believe you are blind, I really can't believe that you're blind the way you do things. And I think genuinely, the idea of having no sight at all is very difficult for people to grasp. Number of times they say to me, but you must be able to see like the shades of black or white or you must be able to see something. No I can't, I had to say to them. i had to say to them, which part of blind don't you understand, you know. Actually, curious thing about being blind is that you actually achieve clarity in a lot of things, particularly on what's going on around you, because you learn to listen so much better. And you pick up so much more information. I think when you can see, we are perceptually very lazy. As my as my stepsister's stepdaughter said to me, well, when we can see we do things blindly. Which means of course that when we can't see we have to do things mindfully. And that is a totally different ballgame. That is a totally different way of living. And you have to learn how to do that.
That's a very interesting way of putting it. And yeah, you know, I listened to a radio program on BBC World Service recently, where you were one of the panelists, and the topic was about your heroics in the kitchen. So, you know, that's something which is interesting. And can you tell us a little bit about it.
One can't eat out and obviously I had to learn how to cook again. And to begin with, it was a shambles. And then I gradually settled down and I began to learn to create systems which would work for me. One of the things I was fortunate in having was an automatic pen friend, which gives you an audio label on things. So I was able to label all the food, and the jars and the condiments, all rest of it. So that was a big help. So I knew what I was doing. And then I develop the system, which I call KISS, and SLOPE, which is, the KISS is Keep It Simple Stupid, which is an old, old English saying. And when you're blind, you need to keep things as simple as possible, because otherwise a lot gets hopelessly complicated. And then SLOPE, S stands for Safety, which of course, you've got to be really careful of, because you've got hot water, sharp knives, electricity, trip hazards, God knows what else. Besides, you have to, you also have to operate on the basis of what I call the lazy person principle, which is, basically, you make sure that you are only focusing on one thing at a time. And then when you actually come to do the preparation of the meal, you are, you've got everything there because you've organized it that way. So you just stand there, and you focus on what you're doing. Even then, and that brings us on to the next thing, Organization. If you got everything organized, you can just be lazy and stand there. Next thing then, having a bowl to put the rubbish in which so you're not having to go backwards and forwards to the waste bin. And making sure that every piece of equipment, every ingredient and the last half of water is there at hand. So you just get on with the job. And so SLOPE, which is Safety, Lazy person organization, Preparation, plus making sure that everything is laid out for you. And then Execution, which is basically just doing the job. And this is, Sheila Kennedy on the food program called it a new philosophy of cooking. Well, yeah, okay, maybe it is, maybe it isn't. But it works me, it means that nothing is left out. And you're not wandering around with your mind preoccupied trying to get something else. Because the minute you start moving about when you're blind, you're actually putting yourself in line for some interesting possibilities, like tripping, falling, cutting yourself, or whatever. So again, this ties in with the lazy person principle, you don't want to be moving about, so you make sure that everything is organized down to the last tee. And that's basically what I developed as a method, and people come in saying, Oh, this is amazing, How are you doing it? So I wrote a book about it, and I called it First Catch Your Rabbit, because it occurred to me, that I wouldn't be the last person to be in a position of losing a spouse. I wasn't the first. And I wouldn't be the last person who was blind, who would be in that position. So I reckoned it would be useful to write a guide on how I'd done it, and the methods are developed, and the sort of basic philosophy behind it. And the basic philosophy behind it is very simple. Just challenge all the time, what you think is possible, because then that way, we keep on moving forward.
So I believe that you have published another book and you're working on your third book. Can you tell us a little bit about those books?
Right. The first book is called A Descent into Darkness, which is literally just describing my descent into darkness in the sense of transiting from a sighted person to someone who can't see. It deals with the emotional firestorm I went through, it deals with a lot of the message I found of coping with life as a blind person, including, I mean, one of the things I do every year is I go around the whole of the South of England, which is about 500 miles to see my children and grandchildren, all on local buses. And I take my dog with me, and a rucksack full of presents and I take about four days over it. So I've demonstrated to my self, if you've got a mouse and a white stick, travel is not a problem. The same with shopping. So again, I've given hints on how to deal with people who assist you in shopping. I've also given advice on how to ask for, and refuse help, because refusing help is actually quite difficult. You're doing a number of things, when you refuse help. You're rejecting the person as such, you're stopping them from doing something they chose to do, you're acting contrary to their expectations, and basically, you're turning your world upside down. Now, if you think that's a bit extreme, just think about how you feel if you offer help to someone and they refuse you. You actually feel quite put off, you think, Oh, well, I wanted to help, they don't want it. So you actually feel quite put out by it. So I spent quite a lot of time talking about that. I also spent some time talking about basic communication skills, because one of the things I learned very quickly was that you have to re-learn how to communicate again, because you no longer got the benefit of being able to assess people, by the way they look, the way they stand. And the gestures, and say you got to rely entirely on touch and sound. So you're actually operating on something like 10% of the information to which you are used to. So you actually have to totally relearn how to communicate again. And you have to do this deliberately. Because if you try and proceed on the basis of what you knew before, all that happens is you end up doing the wrong things. Well, that doesn't help at all. And the other thing, of course, I get warning about in that book is the Charles Bonnet Syndrome, or CBS. CBS is when the visual brain doesn't have very much to do, because there's nothing coming in from the eyes or very little coming in from the eyes. So it makes things up, basically, hallucinations. Now, if you know about these hallucinations, they're not a problem. If you don't, you can start thinking you're going mad. And that is a problem. Because as we all know, sight loss and mental health are not that far apart. And sometimes a lot of people become very depressed, even suicidal, when they lose their sight. And being able to manage your sight loss, and get a positive attitude about it, and be cheerful in adversity as it were. or as we say the Marines laugh in the face of adversity. I don't mean being hysterical either. You know, it's a very important aspect of dealing with it. I think above all, in those early, in those early days, I learned to climb out of being disabled to being someone with an inconvenient, with an inconvenient condition. Because as I said to you earlier, before we started this, I do not consider myself to be disabled at all.
You know, unlike the time I was growing up in the 1960s and 70s as a blind person, today there's a lot of technology that is available. So what is the role that technology has played in your life?
Oh! Immense! I've mentioned the pen friend, that labels everything I need to know. Yes. So I'm not you know, I'm not putting curry in trifle or baked beans on the strawberries, you know. So I'm actually, when I put my hand on something and I'm not sure what it is, I stick a pen friend on it. Oh, yeah, that's chop tomatoes, okay, so we know where we are. Um, I also have a talking microwave, which is actually quite useful. But above all, I have what we call a Synapptic phone. So I can find my way around with a touch screen because everything I touch it tell me what I'm touching. So that is, if I can use a phone, that gives me my independence. The other thing I've got is my assistive technology on my computer. Every keystroke is repeated back to me audibly. So when I'm writing, I know what I'm writing, I've only got to hit a particular key, later read it back to me. I mean, there's no way I could have written three books, and with a fourth on the way, without that kind of assistive technology. But one of the things I've had to learn to do touch type, it took me six months. It took my 16 year old girls a fortnight, but it took me six months. But that's age for you.
So, you know, it's very impressive, Simon, at the age of 64, between 64 and 74, you've done a lot of things which a lot of young people might not dare to do. You've written three books, a fourth one on the way, you've learned cooking, and you've kind of written a book about cooking. And, and you've kind of turned a condition, which most people would say, is disabling. But you've kind of accepted it and then moved on with life. And just see that is just an inconvenience...
George, can I tell you, I walked 84 miles along Hadrian's Wall for charity. And that was quite an adventure. And that's up in the really rough bit of it on the border between England and Scotland. That's as far as it runs. I've also walked from Ashbourne to Fairfield via one of a local reservoirs and that's about 61 miles again for charity. I've also relearned how to sail on a sailing dinghy. So I go sailing quite regularly. And I'm also learning to climb at the moment. And I've also had a go at skiing. So yeah, I've done a lot of things since I lost my sight. The best one, I think was getting my sailing back because I've always sailed. So I can steer a boat in a straight line on the wind, quite happily, it's not a problem. I just go by the feel of wind, direction of the sun, the sound of the water on the hail, and the sound of wind in the sails. So I've learned to use other senses to do what I used to do with my eyes. And climbing, that tends to be guided in the sense that they'll say yeah, up, up to your left, slightly high. There's a whole grub. But I'm hoping, and this isn't that unusual because I was with a youngster of 19 with severe sight loss blindness, who actually led a climb on the old mountain of Hoi, which is one of the classic climbs in this country. Yeah. So yeah, I mean, as far as I'm concerned, somebody pours a number, too high a number for my liking, but it's still me a number. So basically, I'm trying to keep myself as active as possible, both mentally and physically. And I don't see being blind an impediment because you just need a little bit of help occasionally.
Yeah, I guess the the secret of living happy and a good life is to have the right attitude. And I think you during this conversation, you very amply kind of demonstrated that, and you've talked about so many wonderful experiences you've had. It's lovely talking to you Simon, and wish you all the best.
Well, George, I think blindness is as much a state of mind as a physical condition.
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