Speaker 1 00:00
[Vision] Australia Radio's 2024 Listener Survey is on now. We want to hear from you. What do you love about our service? What can we do better? Your feedback can shape our future. Plus you'll have a chance to win one of eight Amazon Echo Pop with Alexa Smart Devices so you can listen to Vision Australia Radio hands free. Ts and Cs apply, visit varadio.org and click the survey link to take part or call 1300 847 466.
Speaker 2 00:28
Amazon is a station sponsor.
Speaker 3 00:30
My computer has just been put in a different room and it took me about three hours to find cords and plug things in and the struggle is real. This.
Speaker 2 00:39
[This] is Studio 1 on Vision Australia Radio.
Speaker 4 00:48
Hello, I'm Sam.
Speaker 5
And I'm Lizzie.
Speaker 4
And this is Studio 1, your weekly look at life from a low vision and blind point of view here on Vision Australia Radio.
Speaker 5 00:56
On this week's show...
Speaker 4
As we always say at this point, please do get in touch with the show, whether you have experience with any of the issues covered on this week's episode of Studio One, or if you think there's something we should be talking about.
Speaker 5 01:14
You never know, your story and insight may help someone who's dealing with something similar.
Speaker 4 01:20
Please email us studio1@visionaustralia.org - that's studio number one at Vision Australia dot org.
Speaker 5 01:25
Or perhaps you can drop us a note on our Facebook at facebook.com slash VA Radio Network.
Speaker 4 01:32
Well, Lizzie, you've been rather busy. Busy? Fine.
Speaker 5 01:35
Yes, yes, I'm in, extremely busy,
Speaker 4 01:41
It's better than being busy Lizzie though, I can tell you that now.
Speaker 5 01:58
Yeah, well I actually, you know, I put it out to the community and this is what we wanted to be talking about and I had an overwhelming flood of responses and you know, sadly I haven't been able to get to everybody that wants to talk about this subject but we're doing the best we can and yes, it's been, it's been, you know, we've had a crazy response and that's why we've decided to re-show it to cover it.
Speaker 4 02:23
And of course, last week's show, Lizzie was, well, you were on your own for the whole period.
Speaker 5 02:28
Oh, I was. My first solo show. It was amazing. Yeah, I got to speak to Melissa and, you know, she sort of inspired me to ask some different questions to our people, our Choir of Angels and it's been really interesting listening to their stories and there's definitely a few common themes that run within those stories.
Speaker 4 02:46
Also, if you are listening to us via podcast, you'll note that we're another week late. That is because we've rolled both Vision Lost episodes into the one fantastically glossy shiny show.
Speaker 5 02:58
Yes, it's another one hour special for the year. How cool is that?
Speaker 4 03:01
But, if you are listening via radio, then, well, this is the first part of our two-part show and, well, we'll have more of the same next week. Alright, anyway, who are we talking to first? I believe we're talking to Neil.
Speaker 4 03:12
So yeah, we are talking to Neil, and then we're talking to a friend of the show, Carly. Yes, that's right. On we roll.
Speaker 5 03:22
As I understand it, you lost your sight later in life.
Speaker 6 03:25
I did, yeah, when I was probably, what am I now, nearly 70, so just after I got Yasmin. So basically six years ago, I'd had diminishing eyesight for probably 40 years, but it got worse once I'd moved up here to Queensland. So just before I'd got Yasmin, I could still see enough to walk around the footpaths here to at least know where things were. And in the last few years, it's diminished. So now I can't see the footpaths, but I can remember where they were, you know.
Speaker 5 04:00
So what is your eye condition?
Speaker 6 04:02
Retinitis pigmentosa.
Speaker 5 04:04
Oh, okay, yeah, that's a very common one, isn't it?
Speaker 6 04:07
It is. Retinitis Pigmentosa is never the same for any person with it. You can be younger or older and retain or lose all the sight. You can never judge what's going to happen because it's not the same with everyone.
Speaker 5 04:23
So when you had more sight, were you able to drive? Were you ever able to do anything like that or have you always been using a cane?
Speaker 6 04:31
No, I was driving. I got my license when I was 18, of course, like most people did. If they'd given me a nice eye test when I was that age, I probably would not have passed it because I used to be not able to read number plates at a distance, but I could see long distance, so like if there was a tree on the mountainside, I could basically see all the limbs and leaves.
Speaker 6 04:56
But in different situations, I saw what was in that crab shock, but in those days, they didn't test ice until probably 13 years ago. I was driving when I shouldn't have, but I got away with it because I'd only go out on the days where I felt comfortable and I knew where we were going and avoided any major traffic areas and got away with it.
Speaker 5 05:22
Right, well because that was going to be my next question, was How long until you had to give up your license? But it sounds like it was quite recent.
Speaker 6 05:30
Probably just over 12 years ago, Jodie and I were going to go to a Christmas party and we were in the car and stupid me was driving and I got to a corner on the road and it was getting a bit hard to see and I thought, I said to Jodie, I said, No, that's it. I said, We can't do this, you know, so we turned around, went home, I said, No, that's it, no more.
Speaker 5 05:54
Wow, that must have been pretty scary then.
Speaker 6 05:57
It is, because you can drive, obviously you can do what you do yourself, but you don't want to hurt anyone else.
Speaker 5 06:05
No, of course not. So what other adaptations have you had to make in your life since your vision has deteriorated?
Speaker 6 06:13
Just basically knowing where you want to go and how to get there. Obviously Jodie can tell me what clothes, what I'm wearing. 'Cause I can't, obviously can't see colors or what they are and know what a pair of shorts are and pair of long pants are, but you've got, have somebody basically coordinate them so that you... get the right stuff on. And also with different, like the washing machine and, um, different things. The microwave in the house, Jodie has put bump stops on different things. So I know what setting is the washing machines on and the microwave. So because you can't see the timer, you can feel where the bump stop is and set it going, you know.
Speaker 5
So, and you've also said that you got a seeing eye dog about six years ago, do you feel like travelling with Yasmin has helped you increase your confidence again to be able to travel independently?
Speaker 6 07:17
Oh, for sure. I go not out as much as I could probably do, but I go out a couple of times to exercise physiology with Yasmin by myself. So we'll walk from our house across the road along the footpaths, up to the shopping center, up to where the left is, because Yasmin, you know, you ask her, you say, all right, we're going up to shops, so she knows. And then she'll take you along that track up to the shops. And then you say straight through because we go through an alleyway. And then you go out to the front footpath and you say, we're going to ex-phys or the physio.
And because she knows, she'll walk towards that and you'll say, Well, find the lift. So she'll walk along, put her nose in the, pretty well on spot where the button is. So to be able to do that in really any weather and most conditions, even when the footpath's a bit muddy, is really good - because obviously with your dog, Yasmin will lead me around any obstacles on the footpath or around any mud or shopping trolleys... or if somebody's walking the other way and not looking where they're going, Yasmin will lead you around them... or if there's a car backing out of a driveway, Yasmin will stop... or if there's a car parked across the driveway, she'll walk you around it to the curb or whichever side of the car is easiest to go through.
So independence is pretty good. I don't like going in the town that much without anybody, but half the time I don't need to. I'm usually either with a support person or Jodie, you know.
Speaker 5 09:04
Of course. And back to the colour, because you say now that you can't see colours, is that something that only happened recently or even, you know, back when you were younger, did you have colour blindness?
Speaker 6 09:17
No, I could see most colours, like, probably saw... probably 40 years of being vision impaired, I could see the colours, so it wasn't too bad, or what I, you know, I knew what blue and green and red and everything was, unlike a person with colour blindness, you know, I could tell basically most colours.
Speaker 5 09:39
And what about your depth perception? Like when it comes to steps and curbs, do you have pretty good depth perception, or has that faded over time as well?
Speaker 6 09:47
That's my own fault because I don't take enough notice of where I'm going half the time. So I'll step up a curb, but if you take notice of what seeing eye dog's doing, you know, you'll say, Find the curb - and then you can sort of feel down with your foot how far the drop is. So depth perception over a period of time had dropped off, but I also had a lot of trouble a couple of years ago with my balance, which ended up my I went to exercise physiology to retain a bit more stop falls over basically because you weren't aware of where you were in spatial awareness.
Speaker 5 10:28
Yeah, it's funny you should say that because I was having this conversation with someone not long ago, a lot of blind and vision impaired people actually have trouble with balance, me included. And I don't know if it's because they can't see the space around them or that, you know, they can't see it as well, but yeah, a lot of vision impaired people have balance problems.
Speaker 6 10:48
Yeah, well, I'd noticed that had got worse, I'd go up to feed the chooks and I'd turn around in the chook shed where the chook feed was, and end up falling against where the chooks lay their eggs, and I thought, oh, this is not a good thing, you know, and then Jodie had suggested that I should do x-phys, and when I spoke to the guys up there, well, obviously, they gave me different exercises to do to my course friend, which was pretty crap, and my leg strength was not much better, so that, of course, when you're trying to find your balance, you fall over because you're not quick enough to maintain your height, you know.
Speaker 5 11:30
And do you get that covered under the NDIS or is that something that you have to work out for by yourself?
Speaker 6 11:37
No, I'm lucky it's under, it's in my package. So it's very good. I go twice a week and have done for the last couple of years. So it's, it's covered, but I guess now knowing how much it has helped me, if I did have to fund it out of my own pocket, we'd have to see if we could stretch it out because like most things on the NDIS, if you tell them you're on a plan, bingo, the price goes up, you know.
Speaker 5 12:02
Of course, of course, yes, I've noticed that. Would you say that your quality of life is still just as good since you've lost your vision as it was when you could drive and, you know, do all the stuff that you were able to do before?
Speaker 6 12:15
Yeah I'd say like most times I'm quite happy with my life. I get out on the tandem bike with a support worker, get out walking with Jodie with the dog. We do, well I don't mow the lawns any more than like I used to but quality of life is really good but I think that has a lot to do with where you live and your surroundings like as in access to basically public transport, shops, things you're not isolated you know so if you want to get out you can.
Speaker 2 12:56
This is Studio 1 on Vision Australia Radio.
Speaker 5 13:02
Alright Carly, so before I ask you about your vision loss, just sort of give us an idea what were you doing before it happened. So like, what was your job, what was your life like? Paint us a picture.
Speaker 7 13:15
Okay, the picture was, I was in my mid-30s and I was working in aged care, so I worked in community in people's homes, I was nursing background, high care, dementia and palliative care in people's homes and would work seven days a week in seeing our clients and yeah, that was the work side of things and the lifestyle side of things are just going through a separation, a divorce at the time and just trying to get my life back together and then my world changed.
Speaker 5 13:53
So when you say your world changed, because, you know, we're talking about sort of sudden vision loss, how quickly did it deteriorate for you?
Speaker 7 14:00
I've got retinitis pigmentosa, RP, no one can tell you when it's going to go, when it's going to happen. But see, in my family, I come from a father that was blind. He lost his sight probably at a younger age and grew up knowing my dad was my dad. He was just blind and we had guide dogs and that was just the norm for us. And working out, having it being an excellent gene, I've got one brother and I knew that he didn't get it. And my concern was my children, me passing it on to my kids. So it was one of those things that I got told that I could not get it, but I was a definite carrier. So it was never a thing for me. I wore glasses since I was three. I had astigmatism and that was just how my life was.
But coming up to the day in question, it was an overpass day. Now I reflect back and there's a lot of signs, but because I got told I could not get it, I just thought, it's just astigmatism. Oh yeah, it's a throw off of night blindness and things like that. But it was coming home, it was a lunchtime break one day and I thought I'll pop into Mum's house because I just don't see the good old duck. And I was driving to her place and it was really overpassed, really dark day and she lives on a street with trees that cover over the road a little bit. And I had a big Nissan Patrol, the big four wheel drive, seven seater. And I was pulling into her street and right at the last minute, I saw this person come out of nowhere and she was wearing fully black.
And I nearly hit her now. If I didn't see her right at the last second, it would have been bad. But right at the last moment, I kind of caught her as I kind of glared over and went, you know, I freaked, she freaked. It was just, I had to pull over. She was absolutely beside herself, which, yeah, see this big white four wheel drive coming for you with bumper bar on it. Yeah, I would be too. And I kind of, I was out the front of Mum's house and I was so throwing back and so scared. I just kept driving. I didn't even stop at Mum's. I just, I couldn't, I wasn't making sense to me, you know, and she's like, You were going to kill me. You were going to hit me. And I said, look, I wasn't.
And then we, another lady come over and said, look, it's not even a road. You shouldn't have stepped out. And I just was, I had to sit up the road for a minute and just go, something's not right, something just, that person was not there. And then I rang Mum and I said, Mum, this has just happened. She goes, come back around. And I pulled in there and I just had a good chat with Mum. And, yeah, she goes, okay, we'll book you into Professor Caronio down in Sydney. He's the one that looks after our family. We've got a few with RP in the family and yeah, booked in to see Professor Caronio because I was driving, he, I kind of got in quick. I think it was two weeks later, where usually you'd be on a couple of month wait, but because I was out there driving, they got me straight in and I went down there and I got all the tests done.
My Mum drove me down there and I had my little son with me, Jed. He was probably four at the time, three or four. And I had already had him genetically tested. It was the boys, you know, having a son. I thought he could get it. You know, he was my concern. I had a daughter and she was fine. She's a lot older. And, um, I had him genetically tested when I had him and I come back from Manchester, he did not have the genes. So I was like, okay, happy days. My kids, both of my kids have not got it. They can't pass it. It's, that's finished there. And I just remember Professor Caronio and he... bit of the backstory is, my dad passed away in the year 2000. He... was in Nepal and he was trying to be the first blind man in the world to climb Mount Everest. And at 48, we lost him.
Speaker 5 18:08
That is really tragic, but at least he died doing something he loved, I guess.
Speaker 7 18:13
Exactly, exactly. And, and, you know, I guess it's all part of the journey. What he taught me in the 22 years I had him in my life, you know, I'm blessed. Some people don't get that for a day out of a father, and I got it for 22 years. And Andrew, on my journey, he's taught me everything I need to know. You know, he's not here anymore. He's been gone for 24 years. But it's like, I know, you know, but yeah, going back to that day when I got diagnosed, Professor Cronia said, go and get your mum, bring her in here. And... he just said to her, she's got RP and it's pretty bad too. And she can't drive anymore. And that was when I was in kind of disbelief.
But in the in the same breath, I thought I knew something wasn't right. You know, I just knew deep down that my vision wasn't good. And then when I got the field test done, you know, it's like, one eye I've lost a little bit in the front at the time, and then the other eye was like looking through a straw, it was closing in. And that's what RP does. That was eight years ago, I got diagnosed.
Speaker 5 19:22
Okay, so since that day when you noticed something was wrong, how much has your vision deteriorated since then?
Speaker 7 19:31
Okay, the first four years was probably, the nights were very dark, the darkness really took over and then coming up to the four year mark, I lost central in my left eye and that's gotten to the point where I can't see out of my left eye now. My right eye is closing in, so it's like a straw and I've got to be looking at something straight on to get it. So if anything's happening around anywhere else, I won't get it. So I'm turning into a little bit of a radar, you know, if I've got to look around and on top of that, I've got a pretty bad stigmatism.
So without glasses, I can't see anything. When I've got glasses on, I can still get that little bit at a computer, but I feel, I know it's coming over and it's coming over quick and I, you know, I don't know if it's because of the stresses in life.
Sometimes I've picked my life around now and I only entertain things that give me joy. And hopefully that might stop it, not stop it, but slow it down a little bit. Because I think in the last eight years when things were not going great, that's when I feel, I don't know, I might just be thinking that up.
Speaker 5 20:54
It's interesting you should say that because I think there are a lot of medical conditions including a lot of autoimmune conditions as well where chronic or acute stress can really bring on a deterioration. So it would be really interesting to see if that's the case. I mean if there's any research about that.
Speaker 7 21:11
Yes. And I feel if, like I said, if I did a timeline back in the last, even coming up to that eight years, I can see certain times in my life that, you know, you're not connected, you just, you're just in that autopilot. And it's not till you slow down that even today, I was trying to just put quads, my computer rooms being moved into another room. And it took me twice, three times as long as it usually would. So that's just acceptance of this disease, you know, RP. And, and yeah, I'm trying to get fit and be around people that bring me joy. You know, I've got a choice. I've got a beautiful, a fantastic job I've fallen into and everything's just good at the moment. So RP is just there.
Speaker 5 22:03
So let's talk about the acceptance part, because that is a major part of losing sight. And we have recently spoke to someone who talks about it like being a grief process, and there's a lot of emotional sort of trauma that comes with that, which we can all acknowledge. But what sort of adaptations have you had to make in your life since your vision loss?
Speaker 7 22:25
The first four years I was still getting around and it was, life just was. It's like I had this burden that, you know, I had to accept it. I had to accept that I'm losing my sight and for four years I didn't do that and I probably self -medicated with things I shouldn't have, you know, that's where my story took me. And in 2020 I'd have to say that it got really dark mentally, physically, spiritually, like I just was not in a good place and I don't know what it was. One day it was just like, I feel it was like dad just come down from above, grabbed me by the scruff of the neck and went, Come on, get on with it. You've got two beautiful children, you can't... go that way. And yeah, I was like, my life from that day onwards, I made decisions to accept what's happening to me and my life's become a lot lighter.
It's joyful. It's attracting like minds, you know, I've met that beautiful crew of tandem bike riders. I never thought I would be riding a tandem. Like I do come from, my dad did do Iron Man to triathlons and he had tandems and that, but it just wasn't, I was too young to, I guess, really enjoy what he was doing, you know, how it was quite... I would appreciate it. Appreciate exactly. I was kind of in party mode, late teens and early twenties, but just before he passed. So I was just like, Oh yeah, mom and dad are going for a 180 kilometre bike ride. I'm just coming home from wherever I went last night. It was just, you know, that's how I got brought up. So it's in me.
Yeah, I guess my journey is different to my dad's. And that's another thing I've had to accept. It's brought up a lot of him not being here anymore. And he's the one person that would have got it. He's the one person that would go, You know what, I get it. And that's been probably the hardest, you know, even though he's been gone 24 years. I think it's just, I sometimes sit and I do talk to him. I do. I have those quiet chats with dad. And if I sit still enough, you know, the right next thing pops up. Yeah, I love believing, you know, he's like my higher power. He's guiding me from above. And yeah, life's not going to... life's life. It's a decision. Either I can have a good life or a beautiful life, and I'm choosing a beautiful life.
Speaker 5 24:56
So you're talking to me on a computer and obviously you've had to have a training to use this computer. What other things have you had to be retrained in as it were?
Speaker 7 25:10
Retrained in. Well, I've got a beautiful guide dog in 2020. So, you know, he's... a part of the package now, Tyson. He's a big black Labrador, weighs about 30, we'll say 36. He's probably 38. But yeah, he was training and he was another... right at that point of having to accept what is happening. He come at, you know, the divine timing was unbelievable because I was travelling when I lost my job. Eight years ago, I could no longer do that job. I kind of sat with it and thought, What can I do? So I went back to TAFE and I would have to catch a train, three stops down towards Sydney.
And I remember I just wasn't accepting and I had an umbrella, you know, one of those long stick umbrellas. Yeah. And yeah, on a 40 degrees day, I'd be tapping my umbrella around just to see the gaps in the trains and, and stairs and things like that. And I kind of had a real resentment against losing my sight back then. And I hope I can laugh at it now, but yeah, here I am getting off a packed train, tapping this umbrella around because I refused to use a cane, but I did get cane training probably in 2019. And then because of my circumstances, I had a young child that I had to walk to school and things like that. And he's on the spectrum. It doesn't mean anything. He's got his quirks. Tyson's been not just a guide dog to me. He's been like a pets and therapy dog to my son as well. So, you know, tick, tick, tick, tick in this instance.
And yeah, so there was training there and... that came along with acceptance as well. You know, I am going blind and I no longer have to look at what car I'm going to drive. It's like, you know, what dog's going to walk me around. And...
Speaker 5 27:02
That's so cool. You're in the shop for, you know, you're shopping for a dog, not a car.
Speaker 7 27:08
No, but I don't look for it, though. Like, yeah, everyone gets their new cars. It's just that I don't want a new dog, but I'm just saying, it was, he came into my life and this dog was not just my eyes. He helped me in a really dark time and he takes my anxiety away. You know, shutdown in 2020 for everybody was just, yeah, mentally exhausting on... everybody had their own experience, I guess. But for me, he come right at the right time. And it was quite ironic, because I got in two weeks before that first lot of COVID and he got taken off me for about nine because training hadn't kept, yeah, because training hadn't completed.
And that was another time of just, I had to reflect and go, what is happening? Is this real? I was double questioning everything. Like, did I get a guide dog? Did I not? That's a lot of madness, but then when I got him back, I was like, nah, he's staying now. Sure, but I do, it was the process I had to go to and that's how it is. But yeah, it was a lot better going down to the TAFE with the dog because people actually noticed to move. I didn't with an umbrella for some reason, I don't know why. But yeah, and then moving forward, I ended up studying more, spending more time on the computer. I've had to learn JAWS. I'm still learning JAWS for the future, but I'm also learning Fusion and ZoomText and...
Speaker 5 28:45
Yeah, very cool. So you got a lot of things you have to re-learn.
Speaker 7 28:49
I have to re-learn for the first time kind of thing, you know, I didn't, yeah, it's, and studying as well has been, look, it's been challenging, but I've completed what I at this stage wanted to complete. And I reflect back and go, wow, I don't know how I did that, but I did. So that's where I'm at with everything.
Speaker 5 29:12
So last question, what would be your message to other people who are currently going through vision loss themselves?
Speaker 7 29:20
Just don't self-isolate, do not think that you have the answers... well you do, but I guess it takes other people that have walked before you or professionals to help you. For me it was to help me manage exactly that acceptance stage and just don't give up, like for me it could be so much more, it could be what's so worse than it is, I've just got a reflector, I've got a roof over my head, I've got money in the bank, I've got two beautiful healthy children, I've got so many things that are right, but only four years ago I couldn't see that, so it took me to reach out, I went out and got a psychologist, I needed to check up from the neck up, I didn't know what was happening, and I've gone back and done a diploma in counselling and now I'm a counsellor.
So it's just about, I could not settle with You know what, here you go, you've got RP, you're going blind - I thought there's got to be more to this, I need tools, I need to meet people, I need to get out there and start living, and it is different, it is a lot different to what I thought it was going to be, but it's good.
Speaker 4 30:42
So far some interesting insights, what have you got out of the first two interviews?
Speaker 5 30:46
Well, it was interesting... just how quickly things deteriorated for these people - both of them have retinitis pigmentosa or RP as it's commonly known. And obviously this condition can strike at any time. And for both Neil and Carly, it, you know, life was going along fine and dandy. And then all of a sudden it struck them pretty quickly. So it was, you know, that acceptance and then learning how to adapt and change. That's what really stood out to me is just how quickly they were able to make the modifications necessary to continue with life as normal. So.
Speaker 4 31:24
I'll come clean to the listener that this is not something I've ever gone through myself. What I have is what I've got - and I think you're the same, aren't you?
Speaker 5 31:33
Oh yeah, I've been blind since birth and, you know, I've, that's the one thing I got to say, this one positive of it is I've always been blind. So I've never known what it's like to have vision, and you can't miss something that you don't have. And so, you know, when I hear about these stories of people that have lost their vision suddenly or they're losing it over the years, it kind of makes me wonder what would I be like in that situation. Would I be just as positive as I am now? Or would I go through the same, you know, the grief process and that, you know, struggling to accept things as they were and modifying and adapting things to be different?
Speaker 4 32:12
I think it's like if you lose anything that you've become accustomed to then, yeah, there is a period of grief. I mean, we've found the same thing when we're talking to former athletes, they retire from their sport.
So, alright, who are we talking to this week?
Speaker 5 32:25
We are talking to Kirsten and Michael.
Speaker 4 32:28
All right, let's hear from Kirsten.
Speaker 5 32:37
Well Kirsten, welcome to Studio 1. It's great to have you.
Speaker 8
Wow, thanks for having me. Happy to be here.
Speaker 5
Yeah, now I've spoken to you a lot off air and you've actually got one of the most interesting stories I reckon. So before we ask about your condition and your vision loss, paint us a picture of what your life was like before you lost your vision.
Speaker 8 32:58
Before I lost my vision, I was actually studying law in Darwin. I was driving to uni every day. Yeah, it was quite a busy life, really, because I was full-time studied, and I came down to visit my family in Adelaide for the holidays. And then I started losing my vision, just woke up one morning with pain in my eyes. That was what started my journey into vision loss.
Speaker 5 33:25
You were telling me like quite some time back that you also rode was it dirt bikes or motorbikes?
Speaker 8 33:30
Oh yeah, I rode motorbikes growing up with my brothers - I have three brothers, yeah my dad was from [?] so we used to go, he used to do dirt circuit speedway which is racing cars and there was a motorbike track behind the the arena where all the car stuff went on so you could do jumps on all the motorbikes, yeah.
Speaker 5 33:50
Fantastic. So we'll jump to your vision loss now. You said you had pain in your eyes. How long was it before you noticed that something was wrong and then actually getting a diagnosis?
Speaker 8 34:02
Yeah, I woke up one morning, I had this really red, irritated eye and I thought, Oh, it's just a sore eye. You know, it'll, it'll get better on its own. A few days went past, I was still having problems with this eye, I was getting discharge out of it and then it spread to the other eye and I thought I should go to the GP and get that looked at, figured if it's a minor eye infection. GP told me the same thing, he said it's just allergies. Yeah, so he just said, you know, get some over-the-counter Zyrtec, some lubricant eye drops from the chemist, nothing to worry about.
Then it didn't get better. Was there a couple more weeks? Went back to the doctor. Was told the same thing, it's just allergies. So that went on for about six months and I was losing more vision all the time. I was very light-sensitive. So then I finally went back to the doctor and I could hardly see. I'd been to him probably six times without him helping me. And I told him, look, I can barely see. And that was when he referred me to the ophthalmology department at the Royal Adelaide. And that was when they first diagnosed my eyes.
So I have a condition that's called chronic bilateral lephroconjunctivitis, which is a medical speak for constant infection and inflammation in the eyes, which is what caused the breakdown in the tissues of my eyes. So my corneas all the way through to my eye retinas, which is at the back of your eye. So that's what caused blindness for me. Wow.
Speaker 5 35:46
That sounds like a really painful experience too, not only have you got the fear of the vision loss happening but the pain of that as well, that must have been really challenging for you.
Speaker 8 35:56
Yeah, certainly. I don't know if you get used to a certain level of it. It was, yeah, to treat it, they have to get the inflammation down. It doesn't, doesn't change the vision loss at all, but it affects how light-sensitive I am. So the more they can control the inflammation, sort of the more comfortable... it is. Bit of a little bit of a combination of things really, because they had to test the discharge that was coming out of my eyes to find out what was going on. It's actually a super common bacterial strain which was really resistant to antibiotics, which makes it very difficult to treat. So it took a long time for them to be able to get the inflammation down. So the problem with that is that there was just more damage happening all the time, the longer it took for them to control the inflammation.
Speaker 5 36:51
Wow, that's, yeah, that is horrible... and I'm just wondering, like, what modifications have you had to make to live independently or to sort of resume life and go back to some sort of normality?
Speaker 8 37:04
Yeah, for me it was getting orientation and mobility instructors out that made the biggest difference for me because when I first lost my vision, well the biggest challenge initially was the light sensitivity which meant I withdrew from everything. I couldn't leave the house, couldn't take the kitchen light from the TV, it was just agony. So I'd end up just sitting in this little corner in the corridor between the bathroom and my bedroom because that was where there was no light so it wasn't painful. Yeah, that was very isolating, being suddenly forced into this dark little corner of your life.
So yeah, for me, one, getting the inflammation down so I could tolerate small amounts of light again. I have special glasses that I got through C differently which filters light for me so it makes it less painful. Yeah, and then they sent out an orientation and mobility instructor to teach me how to crossroads because that was the biggest challenge for me was I was living next to a road that is six lanes of very busy traffic. Oh, I was going to imagine it. Yeah, learning how to navigate on my own again.
Speaker 5 38:21
And what has you said before that you studied law? Now, have you resumed your study since you lost your vision?
Speaker 8 38:29
I have. I actually, when I was losing my vision, I was still trying to study. I'm very stubborn, so I thought I could just kind of force my way through it with just, you know, sheer force of will. So I'd be squinting at the screen and the light would be making my eyes just stream constantly. I'd be squinting at the screen trying to read it. It was very challenging. I ended up having to withdraw from all my subjects and I had to take it was, I think it was two years off of uni for I was able to go back last year.
So I've had a lot of help from the access and inclusion team. They've set me up with some assistive technology and I can get all my textbooks on my laptop that I can read with my screen reader. And yes, I'm now back at uni. Yeah, it's been really well, actually.
Speaker 5 39:21
Brilliant. And what about your mobility around the community? Have you managed to sort of get some level of cane training and you feel safe out and about now?
Speaker 8 39:31
Yeah, I have actually. I've had quite a few lessons with my orientation and mobility instructor through guide dogs. She's been teaching me how to navigate public transport so I can get myself to appointments and things on my own and to the gym and the pool and anything else that I want to do and crossroads safely again. That was the biggest barrier, biggest scary thing.
Speaker 5 39:57
Brilliant! So what would be your message to other people that are going through vision loss right now? If you could talk to them, if you could say one thing to them, what would it be?
Speaker 8 40:09
I'd tell them that they're not alone - because when you lose your vision suddenly it feels like you are. It's very confusing and scary and you don't know what's going on or how you're going to be able to cope with this level of vision. You don't know what's out there with support services and assistive technology. Like for me it was an absolutely terrifying time so I'd want to tell them that there is support services available and there's a whole community of blind and vision impaired people that they're going to be your support network and yeah it's the biggest difference in the world, that sense of community.
Speaker 5 40:51
And just going back to the supports that are out there, how did you reach out to get the supports that you have from Guide Dogs and see differently? Because from talking to people, I've found that they don't know where to turn at first, and so how were you able to find them, to reach out to them?
Speaker 8 41:09
Well, luckily for me, my mother actually used to work for guide dogs. Oh, wow. Yeah, so we had, you know, the connection was already there really. So yeah, she reached out to some old work contacts that were still there and got me a referral to guide dogs. And she had referrals to sort of all the different vision organizations through them. So yeah, I was very lucky in that way.
Speaker 5 41:36
Amazing... well thank you Kirsten for chatting with me today, it's been great to hear your story, anytime there's...
Speaker 8 41:42
Thank you for the chat.
Speaker 2 41:47
This is Studio 1 on Vision Australia Radio.
Speaker 5 41:54
So Michael, before we talk about your vision loss, paint a picture for us of what your life was like beforehand.
Speaker 9 42:00
I've had a pretty lucky life. I grew up with four brothers and sisters, two lovely parents, lots of support, didn't have a lot of money in the household, but just about all of us where I would have go through university, I guess that was because Mr Whitlam at the time made it free, which was a benefit to all of us. Qualified as a town planner, worked firstly for the housing trust. I have a passion for what the housing trust does in South Australia and 17 years there and then 13 years working for the Queensland Department of Housing, five years of which was working in Aboriginal and Torres Strait Islander housing.
For a whole variety of reasons, we came back to Adelaide from Brisbane. We had a granddaughter and for the last two years of my working life, I worked as a planning consultant. So I've been a town planner, a project manager, a program manager, a construction manager, a design manager, quite a few elements in my sort of career, I suppose.
Speaker 5 42:57
So you've worn many hats... and did you drive at all when you had full sight?
Speaker 9 43:03
Definitely. So basically I drove, I was responsible for our finances, I managed the house in terms of maintenance, I managed the garden, all of those things I did before I lost my sight.
Speaker 4 43:17
Did you have much experience with disability or even vision impairment prior to this happening to you?
Speaker 9 43:24
With disability I did, because in Queensland the Department of Housing wanted to make sure that there was some accessibility in the houses that we built. It was pretty low level accessibility but it wasn't there. And when I worked for Aboriginal and Torres Strait Islander Housing we built five houses for people coming out of institutional care with severe disability. So I had a lot of conversations with parents and carers in terms of how we could make that work for those people. That wasn't a blindness disability, that was other severe disabilities.
Speaker 4 43:56
It's always something that fascinates me when someone has an acquired disability, is that when we're born into this world... so, I mean, what would you have thought of line of vision and care people when, well, when you were able-bodied?
Speaker 9 44:08
Interesting, because I used to see people with a white cane, and I thought, well, these people are basically vision impaired, but they're still able to get up and about. And also, you know, seeing people with guide dogs, and of course, guide dogs are like children, you know, you basically want to go up and say hello and have a chat with them, but you really want to have a pet of the dog. So I guess that was sort of reasonably peripheral. Other than that, I knew not much about what blindness or low vision was going to do in terms of impacting on someone.
Speaker 4 44:40
Okay, so let's fast forward now to when did you lose your sight... and it's an idea of, well, what led up to it, what happened?
Speaker 9 44:49
I lost my sight in two parts. So I had to have some operations on my eyes that I... first operated on my right eye in 2014. That very quickly turned into inflammation, and I was a bit worried about it might have been more than that. So they put me in a hospital, I had three operations on my right eye, and I went blind in that eye within about four weeks. And that wasn't catastrophic because I still had sight in my left eye, so I was able to drive, I probably shouldn't have had, but I was still able to drive and do most of the other things that I did before that operation.
Speaker 4 45:27
They even for, originally I mean something routine or...?
Speaker 9 45:31
It was. I don't normally mention this because I don't want to stop people from this operation. It was for cataracts. As I say to everybody else, my partner said both are cataract style and I know many people that had cataract operations. It's one of the most successful operations you can have. But for me, as we found out later, and I'll talk about that in a minute, there was some special circumstances as to why that happened to me. After my operation in 2014, in 2015, there was a lot of gnashing of teeth and trying to work out why I had gone blind in my right eye.
I saw many specialists, eye specialists, nose and throat specialists, immunologists, allergists. They tested all the antibiotics that they used and were eye on my skin, nothing came up. So when I had to have my second eye done in December of 2014, 15, everybody said, Well, have the operation. You shouldn't have any worries. So I had the operation in December 2014. I had 20-20 vision for about three days and then the inflammation came up again. They were worried, somebody sent me the hospital. I said I didn't want to have any operations. I wanted to basically try and work through other ways of saving the sight, because it appeared as if that was going to follow my right eye.
So we had massive antivirals, massive doses of prednisolone, plasma. They tried everything. They sent out at all points both around Australia and overseas to try and understand the characteristics of me losing my sight, but nothing came back that helped me. So gradually in 2015, I was declared legally blind around about my birthday in January and then I went from there to being totally blind by about June of that year.
Speaker 5 47:23
That's one devastating birthday present.
Speaker 9 47:27
It was. But look, it was, I guess it came with a wonderful surgeon who prepared me for the fact that I was possibly going to lose my sight. He thought I might have some residual sight, so when I was declared legally blind, I thought, Yep, I can possibly still live with that. But as my sight deteriorated, it became more and more of a challenge. And what we found out about six months after I lost my sight, because I had a phone call from my surgeon who did my laser vision, he said, there is information out of America. We have a very similar cohort, a lot of people, about 15 people and 23 eyes with all of the same issues that I had.
And they worked out that I was topically allergic, that is, in my eyes, to the back of the eyes, and they used to wash out your eyes after you had a cataract operation. And my immune system reacted to that by closing down the blood supply to the optic nerve, so it was fairly catastrophic in that sense. And there's now a diagnosis for what is called hemorrhagic occlusive retinal vasculitis, HORB.
Speaker 4 48:41
So something that started as, well, it's a routine operation that I think almost everybody's going to end up going through at some stage. I'll speak for myself. I've got a cataract in my left eye, I name it Bruce. It basically means that when I'm in my 60s and stuff like that, it will have to come out and I'll have my vision restored to, well, what it was like when I was in my 20s, which wasn't that good in there to start out with anyway, but anyway, so when you were declared legally blind, how old were you?
Speaker 9 49:15
I was 61.
Speaker 4 49:17
How did that affect what you normally do? I mean, how did that change the way you did things?
Speaker 9 49:24
It changed everything. I had to retire from my job. There's no way I could be a town planner because it's a very visual job. I immediately lost my license. That happened very quickly. I was no longer, I was sort of able to do things around the garden initially and around the house, but that very quickly became problematic as I had lost my sight. So everything changed basically. And that was at a time when I had hoped to work probably to my age now, which is 70, I would have liked to have kept on working. So big changes after working for 40 years, we had to deal with Centrelink. It was catastrophic in that sense.
Speaker 4 50:12
So next week we're doing a show on the NDIS and how people fall through the gaps when they're over 65 and just doing a quick, doing the maths. Do you just fall in, or are you outside the limit?
Speaker 9 50:28
I got included in the NDIS when I was 64 years and 10 months.
Speaker 4 50:33
You're lucky.
Speaker 9 50:35
How lucky is that? I know. And I cannot believe the disparity now between my opportunities that I get through the indie ice, which I know is changing fundamentally very shortly, but hopefully still provides me with support against somebody that saves over age 65.
Speaker 5 50:52
So we talked a lot off air about the importance of talking about the impact that vision loss has on the families of those that are going through it. What sort of impact did it have on your family, or more to the point, what impact have you witnessed vision loss have on other people's families as well?
Speaker 9 51:10
Thanks for that question, Lizzie, because I'm very passionate about this. I think that vision loss impacts not only on the person, but the family around them. And I've witnessed that with both my partner, but also talking to other people that have gone through visual loss, particularly later in life, and particularly for those that are, you know, in working and have to deal with how they manage maybe to continue working or maybe have to stop working. So from my perspective, it led to my partner becoming the main driver. She also then became the main finance person in the house, and my partner is dyslexic and that became a bit of a challenge to her.
We had to deal with, you know, garden and maintenance, house maintenance, pretty much I became fairly dependent on her to start with. I mean, I'm gradually over the last 10 years working my way out of that to try and reduce the impact on her, but it was significant.
Speaker 4 52:06
What about yourself, though? I mean, we've had a few people talk about the grief process of when you actually do gain a disability, and sometimes it feels isolating. How has that affected you?
Speaker 9 52:18
It was initially, and one of the things we did when we first made contact with See Differently, formerly the Royal Society for the Blind, was we got some counselling, and that really helped us to understand our current situation at that time, how we were both dealing with it differently, and some tactics for working out how we might deal with it as we were going forward. And that was a really important stage in our cycle of the anger, the grief, the anxiety. I never got depressed, but I was certainly anxious at times about what my life is going to be like going forward.
Speaker 5 52:59
And, you know, that leads perfectly into my next question - because I was going to ask what supports were there for you, but what also what supports do you think could have been more forthcoming and could have been better?
Speaker 9 53:13
Okay. So clinically, the hospital was fantastic. They had a great surgeon. But in terms of social support, in terms of understanding what future supports might be available, it was absolutely hopeless. So my first step is to say that what we need to do, and I know this is happening at the moment, is to get out to the optometrist, the people that are involved in hospitals, to say there is support out there, and to make sure that when somebody's going through vision loss, that they know what levels of support are out there, and to get them into the system as early as possible. So that was the first thing.
Secondly, making contact with See Differently was initially disappointing. It happened to be after Christmas, and things were a bit messy, and they don't triage like they did now. So we went in to have a meeting with them. We sort of walked out thinking, not sure what that means, but we persevered, as did they. And I have to say the support that I've had from See Differently has been magnificent.
Speaker 4 54:19
So going back to the able-bodied you, now we've heard what our guest who had said she hears these conversations sometimes on the bus or tram or whatever and when she walks on with her white stick and that sort of stuff and there's this debate what they'd rather lose their hearing or their sight and her comment always is I wish I could just simply say I'd rather be deaf too because I don't want to hear these conversations. What would you say to your younger self now? If the thought of having a disability was there, would it be more frightening or less frightening?
Speaker 9 55:01
I think it's probably going to be equally as frightening initially, but then hopefully with the level of support that's available now, it becomes less frightening and you start to see that you can live with blindness. One of the things that I say now is that I choose not to think about what blindness has taken away from me, but what I can do with my blindness. That is a message that I would try and get across to anybody that's working their way through the system. Some of the things that I did before, I still do, I just do them differently. Assistive technology is amazing and getting even better by the year.
And I say this as well, which is a funny thing to say, there was a former Prime Minister said a few years ago, there's never been a better time to be in Australia. Well, I say there's never been a better time to lose your sight, because of what supports around. And I know that sounds sort of strange, but it is important when people understand there's so many levels of support out there now, both in terms of social support, psycho support in terms of issues it might be going through, but also assistive technology, which makes your life easier to navigate.
Speaker 4 56:14
Is there something that you've learnt from all this that you would have never learnt in a million years had you not lost your sight?
Speaker 9 56:21
There are so many things, Sam, I do things now that I probably would never have done if I was sighted. And I actually cherish the fact that some of the things that I do now, I'm actually out there providing support and assistance to other people that are going through what I went through 10 years ago. So I definitely see that there are, I suppose I shouldn't call them positives, but if you should work your way through the initial impact of understanding that you're losing your sight. And for some people it can be fairly sudden, which is very catastrophic.
And for other people it can be a slow burner, which is equally catastrophic because you're gradually seeing the things that you love to see on a daily basis sort of contracting away from you. So for me, I swim three times a week, I walk with my guide dog every day, I go to book club, I navigate around to medical appointments and other things by myself. I've become much, much more independent, but it's been a process of learning how to become more independent and doing the things that I want to continue to do. I'm on a board for not-for-profit, I'm on the finance committee, I'm on the acquired engagement committee, I want to see differently trying engagement committee. So my life is equally as busy as it was before I lost my sight, but in so many different ways.
Speaker 5 57:54
That's amazing. I was going to ask actually if you had a message for anyone going through vision loss, but I think what you said about, you know, there are so much support out there and that you can still be a meaningful and productive member of society. I don't know. Well done to you. That's amazing. I'm so glad that you were able to return to, I don't want to say some sort of normality because of, what is normality?
Speaker 9 58:18
Exactly. It's a bit, Lizzie... you know that we were at a panel meeting the other day where we had people that had been blind since birth, like yourself, other people were suffering with vision loss, other people that had lost their sight quickly, others slowly, someone had died, dogs somewhere there. And pretty much all of them were making their way in the world in one way or another.
Speaker 4 58:40
So before we go, let's flip this eye to your [?] head a little bit. Just say you wake up one morning, open your eyes and your sight's been returned and everything's back to normal. What would be the first thing you would do?
Speaker 9 58:52
Go out and look at my partner. I've always been an observer of people, and you know I've been blind to 10 years now and I guess I just would go out and firstly look at my partner and go outside and just you know look in wonder.
Speaker 4 59:11
Michael, thank you very much for joining us.
Speaker 9 59:13
Thank you guys.
Speaker 5 59:19
And that's a wrap for this week. A big thank you to Neil, Carly, Kirsten and Michael for sharing your stories with us. And of course, a big thank you to all of you out there who have listened to us for a whole hour. Next week...
Speaker 4 59:33
While we enjoy the benefits of the NDIS, there's a whole section of our community that doesn't. We look into the world of over 65s and what they're missing out on.
Speaker 5 59:44
But between now and then, please do get in touch with the show whether you have experience of any of the issues covered in this week's episode of Studio 1, or if you think there's something we should be talking about. You never know, your story and insight may help someone who's dealing with something similar.
Speaker 4 01:00:00
You can email us, studio1@visionaustralia.org - that's studio1 at vision australia dot org.
Speaker 5 01:00:05
Or of course you can drop us an order on our socials, just go to Facebook, Instagram or X and look us up at VA Radio Network. We want to hear from you.
Speaker 4 01:00:16
See you next week.
Speaker 10 01:00:17
Vision Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation for Studio 1.
Speaker 11 01:00:28
Thanks for listening to this Vision Australia Radio Podcast. Don't forget to subscribe on your preferred podcast platform. Visit varadio.org for more.
Speaker 7 01:00:39
Vision Australia Radio - Blindness, Low vision, Opportunity...
