 Welcome to Boogie Ponders, the podcast where I explore big questions with brilliant people. I'm Boogie Nightsmith and I'm your host. Today's question is, how does losing your sight affect how you feel, and I'm in conversation with Kate Holden. Kate is a Senko who works across her local authority, where she has set up nurture bases, worked across specialist provisions, pupil referral units and speech and language bases. She lost her sight for several years in her 20s due to a condition called keratoconus. In this episode, we're going to explore the wider impact on Kate of going from sighted to blind to sighted again and how this informs her support for children. Hi, I'm Kate Holden and I'm a specialist teacher working for a charity called the Together Trust. So the majority of my work focuses on autism consultants, say training and direct work with pupils. That's not why I'm here today. I'm here in a non-work relating capacity to talk about my experiences of sight loss, which was about 15 years ago now. So in my late teens I was diagnosed with a progressive eye condition called keratoconus, relatively rare and it affects the cornea and what happens is the cornea gradually becomes thin over time and bulges and becomes cone shaped. So this distorts vision quite significantly. So in the late 20s I was one of the really unlucky ones really as the disease had progressed so much so that there was nothing that could be done anymore. So I had to have two corneal transplants, two different donors, two years apart. Wow. And just you said it's quite an unusual condition and then even within the condition that you were a kind of sort of unlucky I guess in its presentation it was especially severe. I mean how did you, were you angry? Upset more than anything. I was very, very young you see and normally they'll want to save a cornea transplant till as late as possible because they predict that they'll only last about 20 years so they don't really want you having to go through that more than once in a lifetime. So it was more of a, I think I was a bit like a wounded animal. You know why me? Why does that happen to me? Why does that have to happen? I was more, it was more that reaction really and it was also a bit unexpected because I'd gone on for so long wearing a particular type of contact lens called a scleral lens and if you saw it you'd be horrified but it's about the size of a tempi coin and it literally pushes your cornea into the correct shape so you can see. But the problem with those was they cut oxygen off to your eyes so your eyes become really sore and you can only wear them for about eight hours or so. So it was getting to the point where my quality of life was awful because I was going to school and teaching, taking them out at lunchtime, putting them back in, coming home and at four o'clock they were out and then I couldn't see them for the rest of the evening and I didn't really think about that at the time I just thought this is how it's going so it did become, it was quite a shock when they actually said you know we're going to have to do something about it. And you wrote a beautiful blog post about this experience which was kind of what triggered us having this conversation because yeah I was really fascinated to hear what it must be like kind of losing your sight, kind of going through that and then sort of becoming sighted again and I was yeah very intrigued by that. And yeah I'm going to read bits from your blog post and ask you to talk a little bit more about it if that's okay and I get, this is quite hard you said you haven't really revisited this for quite a long time until you wrote the blog post. No no I mean I could honestly hand on heart so until I wrote that blog post there's only two times in a year when I'll think about it and it's on the days that the operations happened and part of that is just you know reminiscing but part of that is because I know that there's two people out there you know who died and gave you their corneas and I just feel like I owe it to them to kind of remember that day so there's only those two days I ever think about it so when the opportunity came up for the blog I just thought yeah let's go for it and what I didn't realise at the time was how much I'd been holding on to all of those things that has happened because when you go through a traumatic experience you just have to get through it there's just no other way and in some ways you're a bit in like survival mode you're not thinking about it at the time you're just thinking I've got to survive and get through this so it was only when I started to write it down I got really really upset and when I finished it I did I did stop a lot but it also felt really good so I've got it out there It's interesting hearing you talk about it and how you were just kind of getting through it and it's only now that you almost understand the gravity of what you were going through just I have this conversation with you in the context of having just yesterday recorded an interview with my very close friend Joe where we explored a time in my life when I was actively suicidal and you know it was a really hard time and it's interesting hearing you talk about it because actually that conversation with him was probably the first time I've really unpacked that time and again just stops and gone wow that was really hard and somehow you're just working on through and I get it's a completely different situation but I think some of those feelings are a little bit the same maybe So at the beginning of your blog post you talked about how you found out and what kind of happened next and you kind of quoted here you said you were told we cannot keep treating this condition Kate it's the end of the road and we're going to have to consider transplants now these were the exact words of my optometry consultant 15 years ago when I was 26 years old he then came over and gave me the biggest hug while I broke down in tears maybe not so professional of him but very human and that's exactly what I needed right there right then it had hit me like a ton of bricks and like I just I got that far and I was in pieces I don't know how you must have felt writing it but I think talk to me about that you know that connection you had with that consultant I mean that's horrible news to have to deliver for him and horrible news for you to have to hear and the fact that he did that in a human way I think is very important though it is it really is important and you know I've known him for a long time I was diagnosed when I was at university in Manchester so Manchester Royal Eye Hospital was literally over the road from my university and even when I moved back home to Liverpool I still kept going there I just felt like they knew me and I wanted to keep that continuity so I did know him quite well and by that point you know I'd been under him for about nine years and I could see I just knew you know when he looked at my eyes that time and he just went really quiet and he was really hesitant when he spoke and I just knew something bad was coming and I think this is why I think when I was teaching there's always this thing isn't there about keeping that professional boundary and it's so difficult sometimes because sometimes all people need is a hug and they just need a bit of humanity don't they so I'm just so pleased that he did do that and that's what I needed at that moment and then I was kind of you know once we'd had that talking and the other thing was he let me cry he just let me sit there and cry until I was done and I think it's really difficult isn't it when you bulge your eyes out and your face is bright red and you sniffle in and you don't want to walk out that room into a room full of people who you know are just going to stare at you straight away and you know experiences like that make me do my job better you know I spend these ones with children sometimes and then I know I have to send them back into a classroom and having gone through something like that I never do that I make sure if they need five minutes on their own and they get those five minutes on their own sometimes that's with me in the room sometimes it's with me gone just so that they can get themselves together and then you know following that I was quite quite quickly whisked away and because they have a site site counsellor on site at the hospital so anyone who's been given some news like that goes straight away and the counsellor who kind of sits you down and points you in the direction of some help really and was that you know that that so that you had the two elements of that approach then one the very human and then the very practical and I guess both of those things were important yeah yeah I think I think really the hook was the most important I don't think I was quite ready to sit and talk to somebody because I was in shock and I can't really remember what the site loss counsellor was saying to me and I've got a lot of written information which is always really important to make you know I'm all about the visuals and but yeah I just can't remember that conversation at all so I don't know I don't know how useful that was but at least I knew that there was support there if I needed it and had this been a relatively sort of inevitable step in the journey or was it quite a surprise the point at which it came quite a surprise yeah they haven't really mentioned how bad my corneas were getting at that point and because I was managing quite well with the lenses I had my appointments were only about six months apart anyway so what happened was my left arm had started to scar and when your cornea starts to scar there's a risk of perforation then which is really painful so they wanted to intervene at that point before it got worse so it was literally within that six month period everything started to deteriorate so yeah it wasn't expected Wow so that's a lot to kind of come to terms with and then you wrote in your blog post about kind of where you were working and how it was at the time which suggests that maybe you weren't kind of best placed to be sort of well supported so you said back then I worked in a really tough primary school I was also the Senko with a third of the pupils on the SEND register it was a very busy job the kids needed so much trauma informed care and we were really good at that what we were absolutely awful at was looking after ourselves and each other yeah yeah so you maybe weren't in the best context for kind of I mean how did were your colleagues supportive or did you support yeah I mean I had you know really close friends there and they were the ones that were just you know they just kind of surrounded me you know two or three people at home full of people but working in a school like that where you know we had so many children with so many history of trauma there was various different backgrounds and every single minute of your day was just devoted to that you know nobody really had a lunch time in that school nobody really had a break time even morning time to having children turning up with no uniform you know they hadn't eaten so we were busy sorting out sorting out their needs and always putting their needs before ours which I think every educational professional does anyway but in terms of staff support and staff well-being that meant that you know you just didn't have it in you almost because it was so tiring and so draining and I suppose at the time we were all suffering from some kind of vicarious trauma without even knowing about it we all took things home with us and you know it was one of those schools where you were there at seven and you didn't leave till the caretaker was throwing you out and there was there just wasn't time to talk and PPA didn't exist then either so we didn't we didn't get that time and occupational health were grating getting me back at the practical side of it and what I was going to need and you know I couldn't have done that without the RNIB and access to work as well but then once you were back it stopped then so all the preparation was amazing and the follow-up afterwards not so much. Did you enjoy your work so before you know before you ended up kind of going and having the transplants and stuff were you enjoying that work because it sounds heavy? Yeah yeah I loved it it was it was so varied you know and it was such a that was my that was my NQT school and I remember that very first year my very first day a little boy in year three set a little girl's hair on fire with a lighter that he brought from home and that was my first day. Wow. Yeah and I had another little boy who would crawl around the classroom barking like a dog most of the day it was it was you know just one of those classes and I kept thinking I have to put me in here it's my NQT but apparently that was that was pretty much the best the best class there was. So it was very much from day one single swim and it was so wobbly you know you just I just didn't know what I was doing but I'm so grateful to have started there because I probably learned more there than I did in the rest of my career and it gave me the chance to get into other things as well and because of the nature of the school we had to speak to language based we had a nature base. There was lots of opportunities to link up with other settings so it was a really good really good job and I did enjoy it when I went back as well but it was just so difficult. Yeah and and and that's it you you talk about that about when you so I went back I was determined I could do this I'd already decided to let go of the Senko role for a while for my own well being. There's no way I could manage the paperwork it took me two hours to type one lesson plan. My PA was amazing at being my eyes but after a good start things soon got harder and some staff members resented the fact I had an extra adult in class when most of them were sharing one teaching assistant between four classes. There was little awareness of sight loss so I was just left to get on with it. I mean yeah that sounds I don't even know where to start with that really. Yeah I know and I think you know that PA the PA that I had through access to work she was to be my eyes and so if I was listening to a child read I had some magnification equipment that put their book up on a big screen and I could manage to see that. But I couldn't see the whole class so she had to kind of sit at the front with me and watch because I couldn't see what Milado was doing at the back. And things like marking and I couldn't mark children's work and she had to read that to me so I needed her like you know pretty much all of the time. But I think a lot of other staff thought well it's another adult in the room that's another adult who can help out you know with group work and things like that and it and it really wasn't. And so I did have her in the class but didn't have anyone else to help. So I ended up needing to use her for me but also needing to use her for other things as well. And it was just the paper where it was just it was almost unmanageable when I first went back and I'd been to a visual rehabilitation centre for six months. And when I first went back with the agreement to the head teacher I was released on a Friday to keep going there. And what I used to do on a Friday was try and get the majority of my lesson planning done on that day. So that it was it was done for the week because I don't think I would have managed to have done it. I was still working till midnight most nights and you know doing a full day at the weekend as well so there was never, never that break. But saying that the time I was 27 and you know you're full of life then you can do it. I couldn't do it now no way could I do it now. How much could you see like you you know what was there just to give people up because you know obviously you said you had the oppressions you couldn't see much but like what how much are we talking. Just really outline shapes and colours and prior to me going back. It wasn't really much at all it was just fuzzy shapes and I know I gave you a link to a site simulator and you know people can use that and have a little look at what my site was like that gives you more of an idea. And but yeah just just really fuzzy colours outlines of things so I could make out somebody's head but I couldn't see their facial features. And then as time went on a little bit by the time I went back I was six months post surgery and I could manage I could manage text at quite a large print level. You know which was something else that was difficult because it was a requirement that I got a certain size text on a certain colour and I could see it then it made life so much easier. But for people to actually I don't think they intentionally didn't give me it but people had to remember to give me you know that size font and we'd be in meetings and these huge packs that be handed out and mine was you know standard size font so I couldn't I literally couldn't see a thing. And so you know feeling feeling quite lost a lot of the time. I'm not just in a work sense but in a life sense because so much changes in your actual life as well. It sounds like some of those things that you needed you know having your, you know, notes in a larger size font these don't sound like the hardest of adjustments to make for someone. Do you know what I mean like as a Senko, you're used to making adjustments for for people who need support for whatever reason and I'm, I'm a little bit intrigued as to just why would I mean. Why when why were reasonable adjustments not just automatically all the time made you know is that is that is that common or. I don't think so now and but then we're talking 15 years ago and the disability discrimination act had only just come into force. It had only been an effect for about a year. So, so now people people just didn't and I also think time as well because you know if you've got to copy 50 page documents in size 24 font on yellow paper you've got to first of all look for the other paper. A lot of schools have a real strict military policy on photocopying don't they. And it would take. I don't know it'd be maybe six times the amount of paper and take twice the amount of time to get it enlarged. And so I think then you know awareness wasn't wasn't like that but I know I know now it's definitely a lot better and once the disability discrimination act was in place. People could people could use that I mean you shouldn't have to use that but you did you would have to start saying I am covered under the disability and discrimination act and then people go. And it's the same now and my partner's blind and we have a guide dog and you know over the years I've seen I've seen such a shift in that 15 years to how we were with the dog with the dog originally. And how it is now and you know I know I still ring up restaurants and say we're going to be coming with a guide dog. But I know it's always going to be okay and people sit us in a corner and they'll take a chair away and they'll bring a bowl of water for the dog. But 15 years ago you were lucky if you could get in a restaurant. You know there was one time we were literally physically chased out with the dog and so I think we've come a long way in a short time. And talk to me about how you met your partner because you wrote about this in your blog as well but you actually met during the course of your recovery right. That's right yeah so in Liverpool we have a visual rehabilitation centre so when you first lose your sight social services become involved and I was sent there. And it was fate really because he went on a Friday and I should have been going on a Tuesday but I switched the day. And the purpose of that place was it was to teach you how to touch type, how to use software that would speak to you and how to use a white cane, how to cook safely in the kitchen. Lots of life skills and how to get dressed in the morning you know and you can't see what you're putting on and how to put your makeup on things like that. And we would have a social area as well so I ended up in a couple of cookery sessions with him and then in the social area too. And it was strange really because most of the people there were probably over 60 and there was nobody my age and Danny was probably the closest. So we kind of just buddied up really and he'd gone through a really bad time he was really unlucky and losing his sight and it just kind of started where he was almost like a mentor to me because I don't know just such a calm and influence such you know one of those people that will just sit and listen and I think that's sometimes all we need we don't need fixing we don't need anyone to solve the problem for us. We just need somebody who's going to sit and listen and can empathise you know it's all those counseling skills isn't it? And he was really really really good at that and because he'd been through it he boosted me up in a way that nobody else really could. Because he understood from the inside or? Yeah yeah he knew what it was like and I think hand on heart if I asked him he'd probably say it made him feel better being able to help somebody himself because he was going through a really really rough time. So I think that as well and yeah we just bonded and you know that was the good thing to come out of it. Everything should have a silver lining but that seems like a pretty massive one I have to say. And it was such a big thing and you know we actually didn't get together till after we'd left we were just the best of friends and then I think I'd left to go back to work at that point and you know he asked me out then and then it went from there but we had our baby then together he's nine now. So that was a big story and they had us up they had us back with the baby when he was first born and we had to take take photos in front of the door and they were like oh it's the first Christopher Grange baby. Oh that's so lovely and was your husband further ahead in that kind of journey than you had he lost his sight longer ago or? Yeah yeah he was really unlucky he had a detached retina from a fall but he'd been a boxer in his early days so probably a weakness there and they couldn't do anything to fix that and he lost that eye. And then he was extremely unlucky in the fact that he got something called sympathetic ophthalmia which is an immune system disorder so what happens is your immune system starts to attack your good eye. It's very rare I mean at the time there were two people in the country had that so whenever he sees a consultant now and they hear his story they're just like oh he was so unlucky. And interestingly it's what happened to Louis Braille. Louis Braille lost an eye puncturing it with one of his dad's tools but then got sympathetic ophthalmia in the good eye. So that's what has happened to Danny but you know the only thing that brought him out of it he told me that because he had his dark moments and you know you talked about genuine feelings suicidal and he had those times as well. And the only thing that brought him out of that was getting the guy dark. I really yeah he said it was the only thing that works so he would literally just sit in a room all day won't go anywhere won't speak to anyone he was he said he was awful you know to live with he was just really angry and really really nasty. And once he got the dark he just felt like he had that semblance of his life again and some kind of normality because once he got that dark he got his independence back without having to rely on somebody else. And that is the one of the hardest things is is your loss of your independence when you lose your sight because you totally totally rely on somebody else. You can't go up house without having somebody with you and you know can't you can't go to a shop and choose clothes without having somebody with you and sometimes you need space but you can't have it at the same time so so so the dog is is transformational and you just can't put into words what what a guide dog can mean to somebody and giving their life back so so the dog gave him his life back and my donor corny has gave me my life back and I think at the time as well as this you know I said about your life changing and not not being independent you totally lose your identity totally you just don't even know who you are you don't you don't fit why because the friendship group that you're in you know like 2026 27 all my friends are going out all the time and that's how we socialize we go out for meals we have nights out and one of the one of the one of the strange things that people won't think about is that a lot of people when they lose their sight they will not eat in public anymore at all because you can't see what you're doing you can't see where the food is you lift a fork to your mouth it will drop off more times than you know you care to imagine you don't realize how much you use your sight to eat so you don't want to go out for meal anymore and if you're going out to a pub at the age of 27 and your friends have all had to drink and you're just stood on your own it's absolutely terrifying you don't know where you know you can't see anybody so your social life goes it's very difficult to go out and if you do go out then you feel you feel guilty because you feel like you've got to have somebody babysitting you all the time because you can't be left on your own can't even go to the toilet on your own you know so it's quite it's quite degrading and you just feel like you don't fit there's this reliance on other people that you might not particularly want to accept and you know no matter how good people are to you and they were that you know my family and my friends were just amazing and I've never got through it without them but it's just how it changes how it changes for you and socializing it's so difficult anyway and you know I think about this when I go and visit schools and I go and talk to my autistic people or I'm doing training on autism but I always think of my sight loss because there's so many experiences at that time that help me relate to how autism may possibly feel so you know the fact that I can't see faces you know when I lose my sight I cannot read facial expressions when I can't see I don't know when people are talking to me when I couldn't you know when I couldn't see because people would start to talk and because I couldn't make eye contact and I didn't know if they were looking in my direction and I couldn't read their face I wouldn't know until they said my name they would say Kate and then I'd be like oh you're in you know and that's exactly what I talk about with my autistic people you know they can't read faces a lot of them and you know don't know when don't include themselves in instructions and things like that so the similarities The other thing that was a massive thing to me that we all needed actually Danny as well you suddenly need a very structured routine and lots of predictability and again I know what that feels like not to have that so again for my pupils please put the routine and that predictability you need a routine for everything when you can't see you have to lay your clothes out the night before because it takes so much longer to do things like cleaning the kitchen worktop you have to do it in a set pattern they teach you to go up left down left up Really? Yeah so you talk these certain procedures and ways of doing things and because you can't see you also can't remember so you're really reliant on these like predictable routines and structures and then if you are going to go out somewhere you need to know where are you going you know how are you going to get there what's it like when you get there where am I going to be sat who's going to be with me all of those types of things are really important so yeah I feel like it's really helped me do my job so much better it's a totally different thing but it's just that I can get it I can get some of it and the other thing the other thing as well is and I now know what a sensory difference is in terms of perception because when I couldn't see the supermarket was the absolute worst place for me to be and I had a real problem with depth perception so if I reached for an object on a shelf I'd be grabbing thinking it was closer to me than it actually was and the other horrific thing was walking down a supermarket aisle and having people coming towards me so because I had this problem with the depth it literally looked like people were swarming at me I couldn't tell where exactly they were so it was real fear I used to just freeze and grit my trolley so tight until they'd gone past me it's almost like the only thing I can describe it as is you know when you go and watch a 3D film and you've got those things it's that kind of feeling so you know when my pupils talk about not being able to go in a corridor at a transition time because of the busyness of that corridor and the stairs not being able to manage the stairs I kind of get how disorientating and how it is literally frightening really really frightening do you think that that experience and being able to sort of empathise with that has that shaped kind of because you were already working as a senko weren't you but has it kind of shaped what you do as well as how you do it or yeah definitely and it's made me do this now as my job you know because I was teaching for teaching in Senko for 15 years and I've been doing the autism outreach and consultancy and training now for 6 years now I think when I got to 15 years of teaching I thought oh it's like 15 years since you know my site as well and it almost instigated that change what do I want to do next and I always wanted to go into this particular line of work and you know I've always loved working with autistic children and their parents absolutely loved it so I got into this yeah and it definitely does you know I think you know we all try and empathise don't we there's some situations that you can empathise more with and I think it just makes you put this like really determined hat on you know and it makes you fight for these kids you know I'm going to make sure these kids are okay you know it makes you more passionate about what you do and you're able to connect then I think and that connection is so important and I think going through being disabled you don't see yourself ever as disabled I still don't see Danny as blind now he's just Danny he's just a person and I think when I when I therefore meet a pupil for the first time I don't look at what's on that piece of paper I don't look at what the diagnoses are or what condition they have I mean I know I know what it is and I've got my background knowledge of that but sometimes I meet somebody and what my perception might be because I know they've got the diagnosis of autism or whatever totally throws me because it's not what I thought at all so I always start with the person and I think losing my sight has really helped me with that I never see I don't ever see somebody as disabled I don't ever see somebody as having a certain condition I just start with the person Is that because of how you felt when you weren't seeing them was that to do with your kind of perception of self or was it to do with how other people kind of treated and responded to you? I think how other people treated and responded to me yeah I couldn't stand the fact that when I was in visual rehab I knew the staff would have meetings about me I couldn't stand that Without you Well they would have meetings with me but they'd also have their team meetings you know like you would in a school you'd have your Monday meeting once a week and I didn't like the fact that and I know they were only planning what they were going to do next and things like that and it would always be discussed with me and it was always involved in me But I just didn't like the thought that they were talking about me you know without me being there and another thing that really affected me and still affects Danny now in our life is I couldn't bear the sympathy I couldn't bear people looking at me like oh that poor girl and I remember I wouldn't use a white cane I was literally bullied into using a white cane because the minute I held a white cane everybody would know I couldn't see and I almost wanted to hide that I would have much rather of been out in public with another person standing next to me and linking their arm I didn't want that cane at all and you know I was offered a guide dog as well which I didn't want to take because I knew it was only going to be temporary and I didn't want to take a dog off somebody who was going to be blind for life so I wouldn't have a dog and I remember crossing the road one day I was doing training with the white cane and we crossed over and there was a couple of ladies at a bus stop and I could see them look towards me and people forget you know when you can't see you can still hear they were talking to each other and they said to each other oh that poor girl oh look at her so young that poor poor girl and that was just not nice to hear so I didn't want anyone to think poor girl and you know poor me I didn't want that because I was trying to get through it and I was trying to survive so when somebody's saying you poor thing that's not conducive to trying to get through things and Danny will say the same now you know he doesn't want sympathy you know he's happy he has a good life and you know you just don't want anyone to think poor you is there any place for that I mean you went through a really tough time is you know was there anyone in your life that you would have accepted or wanted kind of sympathy and empathy from or was it really just about focusing on continuing and getting through it I think I think part of that is a shield isn't it because the minute you start to accept sympathy is when you start to crumble and I felt like I was made of glass at that time and I had those times on my own in private where something was happened and I would literally break I would just break into a thousand pieces I'm getting upset talking about it now but just little things it didn't even have to be anything big it could be something like I remember one night I came home from work and I had a doctor's appointment and I got home from work and just to get to the doctors I had to get two buses there and two buses back so by the time I got home it was half past seven and it started pouring with rain and I got in the door and I just I just collapsed inside the door and I just sat on the floor and I just cried and it was it was only that you know it started to rain and the bus the buses took so long but that's what it was like it was just these little things would just shatter me into a million pieces and then I'd have to pull myself together and and I think you know we talk about resilience don't we and the things that we have in our lives to make us resilient and I just think you know life's going to break everybody at some point and it's just where you get where you get the strength from at those times to put all those broken pieces back together and and I think you know we don't have to be strong all the time No and I think actually you know hearing you kind of say how that felt at that time and actually it seems like a perfectly reasonable response in just the same way that I've got lots of people coming to me at the moment needing support and advice with their mental health because we're in the middle of a pandemic and you know what people are feeling low and they're feeling anxious and that's a really reasonable response in the given situation and I think that to lose your sight like that and so young and for it to feel like it took away so much of who you were and what you wanted to do the fact that maybe you'd feel a bit down about that and find it a little bit hard to manage day to day sometimes that seems normal no reasonable Was that something they prepared you know you went to this site rehabilitation centre and as well as introducing you to the love of your life they taught you how to do many things to manage day to day how to wipe surfaces in the right ways you didn't miss a bit did they talk to you about your mental health and your emotional wellbeing as well Yeah yeah we had like weekly mentoring sessions so we'd always have an hour with somebody who worked there and then there was counselling on offer as well which I did do a little bit of but I don't know I just the counselling helped a little bit but I couldn't I felt like I needed somebody who understood who had gone through it so you know obviously my counsellor was cited and the majority of the staff was cited as well so my comfort and my rehabilitation and my counselling came from the other clients that went to the rehabilitation centre because I just felt like well they all know what it feels they all know what it feels like so when they give me advice that's genuine advice you know that's coming from there that's coming from somebody that knows what this is like and you know when you were saying about you know losing this identity I used to look forward to those Fridays so much because it was the only place where I felt comfortable in my whole entire week because when I went there everybody was in the same boat I wasn't the different one and we were all in the same boat and it was like the sight loss didn't exist it didn't matter it's always like it took it away for a day so I used to just wait for those Fridays and were you unusual there in that I guess from the beginning you knew that this was going to be a temporary thing for you were there other people in the same situation or were most of them losing their sight for good? No there was nobody else who was going to get their sight back there at that time so there was about 15 of us there on a Friday and I must say that in itself came with an incredible amount of guilt I used to feel so guilty that you know I was there and I was going to be okay and they weren't so when some things were offered to me like the guide dog which would have helped me I just felt like I wasn't entitled because they were in a much worse position than I was but does that make sense I mean would you you know if you're working with a child and maybe they're autistic but they're not you know they are higher functioning say than the next kid would that mean that they shouldn't take the support that's offered to them I mean in your role working with them would you advise that? It shouldn't mean that they take the support but I think you and I know a lot of children don't want that support and don't want to be different and don't want to stand out but I always find a way to get that support in a discrete way and so I have a few children I'm working with at the moment who will not accept anything that looks different to anybody else particularly the teenagers who are trying to put these visuals in that we know are going to help and they won't accept them As far as I'm concerned that is absolutely fine I wouldn't I wouldn't carry on with that because I know how it feels to have something forced upon me like using a white cane I really did not want to do that to the point of where I was defined about that so if I know that something's going to work for people I'll try it but if they don't want it then that has to be their decision but then it's about how we find ways to put that in discreetly you know an example would be I've had a young man who I worked with he was 15 and he did a lot of work on anxiety and emotional regulation and he needed to indicate when he needed to leave that room but he just wouldn't accept anything that was different so we put two biros in his pencil case and if he pulls the green one out that everybody used anyway for correcting the work if he took the green one out and it was on his desk that meant he needed to leave the room so it was just finding other ways of doing that and then yeah yeah being discreet about it Would you if you could go back and you know mentor yourself almost would you sort of counsel that maybe take the dog maybe use the stick maybe take the help you deserve it or do you think that the approach that you took is the one you would advocate Yeah I don't think I'd change anything I just think I just had to go with what felt I'm a heart person and I do I do go with my heart and I go with my gut a lot and maybe you know I'm wrong and maybe I'll think about that later and sometimes yeah that was the wrong thing to do but in that situation I genuinely still think that I got that got through that in the best way that I could and I think because because you're so anxious all the time you don't have that capacity to think things through properly so I think of a lot of what you do especially when you're on the spot and you're out and about you can't see you just go with your gut and thinking doesn't really come into it if that makes sense It makes perfect sense you're just kind of trying to manage to get through minute to minute by the sounds of it really and it does sound a bit doom and gloom but you know there was so many funny things I was going to ask was there any darkly humorous moments So I remember I went to ASDA and you know when I was saying about that depth perception I ended up knocking a whole pyramid of chocolate oranges and the security guard was amazing I remember standing there going I'm so sorry I can't see I'm so sorry I can't see I just ran over and he was like it's alright love I'll fix it I'll build it back up again he handed me a chocolate orange and he said take that home with you it's alright and the other thing I did one time was you have a device and you put it on your clothes and it speaks to you and tells you what colour so you know what colour clothes you wear and you see but it didn't wait for me one day and I went to school and one of the kids said to me Miss where have you got a brown shoe on and a black shoe on they were both the same shoe I just had them in two different colours and I hadn't I hadn't actually realised I told them do you know what and I was so quick I just said oh I forgot to tell you it's our Tuesday it's our Tuesday The other thing that my mum said to me was when my left eye was recovered enough and it was settled enough because what happens is you have to wait six months and then over a period of another six months they start to take stitches out but they take alternate so they might take top and bottom left and right there's 16 stitches in there so you have to keep going back every two months to get just two more out two more out so there's a lot of adjustment and a lot of time to wait but when I did first get my glasses you know my surgeons were incredible and if I go to see an optometrist now they still say to me these are the best transbite graphs I've ever seen so I'm really looking but when I first got that pair of glasses I ended up with 2020 vision in my left eye which was just oh I can't even describe it was just incredible and I remember putting these glasses on and I came home it was a bit wobbly you know because they were all new and I saw my family for the first time and I just went oh my God you all look so much older I didn't know you had wrinkles at the side of your eyes that's hilarious I can't believe I said that it just came out because I've not been able to see faces for so long I just saw all these features you know lines and all how about yourself did you look different yeah yeah yeah definitely definitely yeah but it was nice to be able to see see things again you know it was nice to be able to give a hair dresses and to get my hair cut and to see what that looked like to be able to put makeup on and to be able to go and choose clothes again and just oh to read you know I really miss reading I tried the audible books but every time I did I fell asleep and then eventually to be able to drive and you know most blind people who've driven will say it's the thing that they they miss the most your independence isn't it anything yeah and it's time as well because when you can drive everything's so much more important isn't it and so yeah being able being able to drive was just amazing and somebody asked me the other day actually on Twitter when they read the blog is there anything you miss about not being able to see hmm let's have a think about that one as well and I do miss you know that that group that group of people who I was with you know you know that that sense of community and that sense of spirit and determination and being with you know that that particular group and the other thing I miss and it sounds sounds so strange but when I couldn't see I used to get these beautiful things happening with lights so one of them was halos so I would see literally at night time everything would have a halo around it street lights, car lights it was so so pretty and then I used to get these starbursts as well so that used to happen at dusk rather than rather than dark and at dusk just when when lights started to come on and a starburst is where you see you'll see that the centre but literally like a star you see all the lines you know it looks like it looks like fireworks and I suppose I miss the halos and the starbursts. Was getting your site back anything like I'm assuming that you've read the rules of seeing maybe you haven't Joe Heap's book have you read that? No I haven't. Oh you're going to have to read it then and then we'll have to talk again so Joe Heap wrote a book called the rules of seeing which is fiction but it's about a girl who has been blind I think all of her life and then she gains her vision in her I want to say her 20s you know she's not a child she's a fully grown adult but she's never seen before and she thinks that she really really wants to be able to see but she actually goes through this it's really I mean it's an amazing book but she goes through a very deep process of like reconnecting and she finds the world really visually overwhelming and I think it was very interesting in that it made you think really carefully about stuff like she had to work for months to learn to catch a ball and things because if you've never developed vision you haven't got depth of perception a bit like you said I guess and yeah I don't know I found it very fascinating and I think yeah I think it questioned that assumption that you know if you're blind that you should want to be able to see and that would make everything better and yeah and I think talking to people as well there's a huge difference between being born without sight and then losing your sight later on because I think you know if you're born with it you've never experienced it so you don't miss it and if you've had it and then it goes then of course you're going to miss it aren't you? It's a different situation because you kind of knew this was something that might happen at some point so were you able to kind of prepare for it in any way were there things you learned to do whilst you were sighted in preparation for losing your sight No do you know what nothing at all and that sounds strange doesn't it because you think if you knew something you know if you know you're going to be ill you'll prepare with your book and the only thing I can think to explain that is because one you're putting your blinkers on because you don't want to think that's going to happen you don't want to think about it but also it's unimaginable until it happens you cannot imagine what it's going to be like so you don't exactly know what to do what's going to help how to prepare I think if the visual rehabilitation people have become involved before the sight loss as well as after that would have been helpful for sure learning how to do things it wouldn't have taken definitely touch type I would have done that you know all the way because that took me so long to learn how to do that and that's something you can do anyway so I would say the touch type would have been the biggest prep for me in terms of work And was there anything about you know when you kind of regained your sight again I'll see you took a couple of the prettiness that you missed and maybe that group but you know people treated you in a certain way when you lost your sight and was there anything there about your kind of self-identity because you kind of lost yourself you said when you lost your vision but was there a sense of that again almost when you gained it back because it must have been a really big part of your life yeah it was a huge part hmm that's a good question Pookey I try I think I was not so much an identity but I think I was very tentative I didn't rush back to doing things it took me a long time to socialise again and I think that came from just how fearful I'd been in those situations so for a very very long time putting myself back into a social situation when I was away from home and I was on in an unfamiliar place was still really difficult even though I could see and I don't know whether that was just triggering that fear that I'd felt back then I don't know I'm not too sure but I was genuinely fearful about going out to the point where I'd sometimes cancel or avoid and I am a really sociable person I love being with people I just love people I love watching them but I just couldn't do that and then I think in terms of family and friends nothing really changed there at all but yeah and I think it's just I think I became a little less tolerant at times as well I think that changed once I got my sight back I just found it difficult to tolerate when and this is going to sound awful but you know when people were just really down moaning about little things basically and I know I should be a good friend and I should listen to all that and I know that and I do that now of course I do but at the time I just thought there's just so many people that are so much more and I found that I wasn't able to be very sympathetic and pathetic at that time I think because I was happy and everything was okay again once everyone else could be happy and everything to be okay and part of that was probably I wasn't strong enough quite in myself to deal with other people's problems as well so it came from a place of I'm happy now I should be happy rather than what are you moaning about I just spent the last X years being blind yeah and I didn't want to ever use that and I never ever said it I didn't say it out loud and I would never use the fact that that had happened to me because no matter what anybody's problem is it's a problem to them isn't it no matter how small it is it still affects them but just at that time I just couldn't quite put myself there but now I've gone the total opposite way I'm almost too empathetic now so I feel it you know I feel it thinking some ways it's made me go out of my way to make to try and be as empathetic as possible and to try and understand people and to just try and be nice and to thank people and to be kind you know it goes such a long way you know when somebody just shows a little bit of kindness doesn't it and how did losing your sight make you you know kind of influence that in you I don't know did you keep in touch with the people who were in your Friday group I mean obviously one of them you see that was it up at that point could I yeah I kept in touch with a couple of people there's a lady that we know now she's fabulous such an advocate for people with sight loss and we are big Liverpool supporters and the advantage of having a blind partner is that he gets two season tickets for the price of one so he gets to take somebody with him all the time and this particular lady goes to the match as well so I always go and see her there are there are there are the odd perks when I was using a wheelchair then I could go and see shows in the West End really cheaply and get amazing seats and take my husband with me so you know you take you take the little perks Danny always says to me you're only with me to use me aren't you that's it I just get you the free festival ticket and the free concert ticket I'm interested to know like when you and Danny were first together and you were newer to kind of not having your sight and kind of working your way through that time do you think it was more helpful that you were together and you were modelling your way through or was it just like double jeopardy definitely more helpful because it was so cute really because we couldn't we couldn't see each other as often as we would have liked to because transport was so difficult you couldn't just jump in a car and you know and we couldn't we couldn't go to places that we wanted to go to we always had to check is the dog okay there can we get there what's it like you know how is it in terms of lights you've got to think about lighting as well you don't go to dark places so we used to do things like plan where we were going to meet and sometimes we were much better being outdoors somewhere because we didn't have to deal with buildings and navigating stairs and you know walkways and steps all that kind of thing so we'd often go to the park and we used to just get a bus and he got a bus I got a bus we knew a certain place where we could meet and then we'd go and get a picnic and go to the park so we did a lot of things like that but that was great because it was almost like having that crutch to lean on and I hated going anywhere on my own so if we were together if we ended off you know in a bad situation at least we were in it together I guess there's always something isn't there and I tell people this all the time in my in my work I've never thought about it in the sense of sight loss I have to say but there's something about you can't necessarily fix a situation for someone but if you can make them feel less alone in their pain in their worry in their experience then I think that goes quite a long way actually isn't it? Yeah and I think you know telling stories like this as hard as they may be um you're not a victim when you share you know a bad story you're actually you're a survivor and that's how I see it you know sharing your story makes you a survivor and you never know who's listening no who may need to hear that story to just get a little bit of courage themselves it's so true I have to ask this is a really sort of shallow and superficial question but you met Danny when you couldn't see did you kind of have like you know did you have in your mind what he was going to look like and how was it when you saw him I could see because I could see the outline and you kind of the shape but I didn't quite know the face and I asked him the same because he couldn't he has very little sight and I said to him could you see me at all and he said no no I said so what was it and he went I knew from day one with you and I said how did you know from day one and he said it was just the energy and the voice and the bubbliness and I think that's a really nice thing about us because when people meet and start a relationship no matter how much we say it doesn't matter looks do matter don't they you know people look at each other and the fact that I always felt great and it always made me feel great that somebody wanted to be with me because of my personality and they didn't know what I looked like at all I'm the same you know the same the other way around I couldn't see him but it was it was him as a person you know that I fell in love with not him and what he looked like so strong foundations there from the off yeah and I think that yeah it must bring a real depth yeah a real depth but what was it like when you felt like you know when you then could see him was that strange or no no not really because I just I just felt like I knew him already I knew him so well and it didn't really it didn't even come into it then at all no not at all and there was no revelation you know where I suddenly saw his face and thought whoo it was just you know I could see that was that and I didn't it didn't even cross my mind what you looked like really well it was six months on you know yeah yeah I'd already left I'd left the visual rehabilitation centre and haven't got my glasses at that point so probably we were probably in a relationship three or four months before I actually got glasses and could see him properly so yeah it just it didn't even cross my mind at all just like how it doesn't cross my mind now that he can't see in certain situations you know when it comes up because the dog's everything you know the dog it makes him so independent and when I went when I had Sam our son I had to go back to work straight away you know he was only five months old so you know Danny was looking after the baby and as long as he's got the dog they went away Sam got strapped on the back pack and off once the dog knows a route we're really lucky we're on the second guide now and we've been really lucky with the dogs we've had most of the time they only need to learn a route once and they know it I wish I was like that I'm terrible like yeah I take many many times to learn a route so yeah maybe the dog is a I'm exactly the same you know I can't remember I'm so bad with directions I would get lost in a square room and then when we've been to hotels I'm terrible at remembering where the room is and you know when I couldn't see I couldn't see the dogs on the on the rooms so finding the dog the dog would literally just walk down the corridor and he would just stop outside the door and it was always the right one they're also great if you lose your car in the car park as well Oh don't, this is an actual like proper problem for me I do like really lose my car and I have a blue badge actually to help because I struggle so much with my anxiety and stuff to do with autism and I'm not always able to keep myself safe but the main thing that it gives me is the ability to always find my way back because if I've spent all day kind of doing kind of out there stuff being with people it takes every single bit of me and I literally have lost all capacity to problem solve and I have before now it sounds so ridiculous I have before now spent like over half an hour looking for my car in the wrong car park it's anyhow so as we kind of draw to draw to the place thank you so much for your honesty and your openness and for exploring this and I think as you said it might be what somebody somewhere needs to hear right now that somebody is listening who finds themselves in an even vaguely similar situation what would you want them to know that they're going to get through it that they're just going to find a new way they're going to find a new way of life that they're going to find a way to adapt but it's not always going to feel that bad and to know that there are people around you who are going to pull you through it so when you have days when you just feel like you are never going to get through this and that's the end of that there's always going to be somebody who you can talk to who will drag you through it if needs be