1 Captions by Chelsea Thoresen. Edited by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017 (CAR ENGINE STARTS) (LIGHT GUITAR MUSIC) EILISH: Despite the fact that neither Andrey or I drive, one great thing about` in the next couple of weeks is that we're going on a road trip, which'll be fun. We're going to be moving to Taupo, which is an exciting new adventure for us all. (HIGH-PITCHED) Hop in. Up you get! Look, there's lots of room for her to lie down. Yeah. ANDREY: It will be really fun going down to Taupo. It's just more friendly. People will say hello to you when you're walking down the street. See you in Taupo. See you later. Love you. Bye! See you in Taupo. Feet and paws in? Yes. Sweet. (LIGHT GUITAR MUSIC) We're going to stay with some family of mine in Papamoa. After that, we're going down to Lake Tarawera. Then we will finally get settled in Taupo. (MUSIC CONTINUES) Does it feel good to be out of Auckland? Oh yeah. (CHUCKLES) Don't miss the traffic at all. Yeah. (CHUCKLES) How's Loie doing? She's fine. She's very cruisy. She's got her paw on my foot. I still live with the effects` ongoing effects of my brain tumour, and to this day, it's still there in my head. That's what's caused me to be visually impaired. I was born without all my ribs on my right side. At about 16 years of age, I had my spine fused, and I now have tremendous back pain, and I'll get a headache. But I'm happy with that. Like, I've learned to not strive for comfort. (GENTLE MUSIC) - (MAN SPEAKS INDISTINCTLY) - Sorry? (LAUGHS) It reminds me of that Harry Potter ` MAN: There's no hurry. JAMAICAN ACCENT: Yeah, take it away, Ernie! It's gonna be a bumpy ride. (LAUGHS) (SPEAKS INDISTINCTLY) I've known Eilish since we were just kids. Back then, I didn't really understand the complexity of her condition, let alone mine. It was just` We were two kids playing, and we got along, because when we were sick, we just, for health reasons, had to be in sanitised areas. (GENTLE MUSIC) Here we are. Yeah. Oh, here comes Loie. Cool. (CHUCKLES) You gonna help, Loie? You gonna help? 'We had a period where we lost touch for about four years, 'and I actually tracked Andrey down, got in touch, and we started catching up again. 'And we just became best mates again, basically. HIGH`PITCHED: Come on, Loie. EILISH'S MUM: They are so different, and, possibly, that's why they get on so well. And Andrey was so tolerant of her, because she was bossy with him when she was little. She was` She was bossy. And he was very cynical, you know. (LAUGHS) It was` They were` It's so sweet. So not a lot's changed. So not a lot's changed, really, no. (LAUGHS) Nothing's really changed. Nah, we're still the same. Yeah. Bossy as ever. (SMACKS LIPS) Well, maybe a little. I think we're` Um, we have a lot of similarities, we really do. Yeah, we do. We` We have a lot of similarities, but at the same time, I think we have a lot of differences. Yeah. I suppose one of the ways we` we do really differ is that, um, and this is something that's kind of rubbed off on me the` the more time we've spent together, um, is he is very sarcastic. He's very sarcastic. (CHUCKLES SOFTLY) And` And` I would say no, but I thought I wouldn't. Bit facetious. Um, and, I dunno, he` he looks at everything in a very logical way, which sometimes annoys the hell out of me, um, because, I dunno, I'm` Would we say I'm an optimist? Yes, I would. I'm an optimist. And this guy over here is a realist. Very much so. Yeah. (WHISPERS) Nah, just` I'm glad you didn't say pessimist, cos I'm not. (LAUGHS) I'm very snarky, and, um... Um, sometimes. Some things. I have` I have my moments of sheer brilliance, but very rare. Some, like` Some` Some things we have the same sense of humour. I think I'm funny. I frequently get reminded that I'm not. Mm. (WHISPERS) Not really. But` But no, we` We do have a similar sense of humour on some things, but some things, you're just disgusting. (BOTH CHUCKLE) You'd say that? I would. I would. What` What` What male doesn't make the occasional poo joke? Sure. (RELAXED MUSIC) (CHUCKLES) I think that their friendship was born when they were very small, and also they've had a lot of shared experiences, shared life experiences, that` that they've had to live in isolation; they've had to learn to live with pain; they've had to learn to live with being medically fragile. When I was 2 years old, I was diagnosed with an optic and hypothalamic glioma cancer, which is a type of brain tumour. I underwent neurosurgery and a craniotomy. Not long after that, I underwent 18 months of extensive chemotherapy. And then, when I was 5, I became very unwell again, and my tumour started to grow again, very aggressively. So I had about six months' more chemotherapy. Then it was sort of a last-ditch effort for me to have radiotherapy, and that's what finally stopped the tumour from progressing any further. I was born in the northern parts of Russia. I was adopted out to my mother here when I was 2 years, 8 months of age. She raised $500,000 for my first trip to America for that first operation. I had titanium implants, and every six months, as I grew, they would need lengthening. At about 16 years of age, one of my titanium pieces actually got infected. They ended up taking them out. There's been about 27 operations on my back. It's just life, though, for me. I don't know anything el` anything different. I don't go to hospitals any more, for good reason. Quite sick of them. (REFLECTIVE MUSIC) All right. (HAND BRAKE ENGAGES) (CLATTERING) Let's roll out. on, Loie. Out ya hop. Good girl. Here we go. (DOOR SLAMS) I have very limited vision. I have no depth perception. I've always struggled with things like steps and colour changing. That's why Loie's made such a` a huge difference. How are you feeling today? Pretty tired today, yeah. It is quite daunting moving to a new town, and, sort of, having to start afresh, particularly after getting established with` with Loie up in Auckland. I-It's a bit different for me. I've moved a lot. But it's hard, because there's just a lot of judgment in the world, especially for someone like me. Just walking down the street, you know, you get the stares ` people looking. And it is the norm, but at the same time, it does get to me. You can meet someone for the first time and, automatically, they've put me lower on their ranking, just because of the way I look. Here, ducky, ducky, ducky, ducky. (LAUGHS) But I` I love it so much when people actually come up and have a conversation, and it's very rare. I've had lots of people say to me, 'Oh, wow. You're` You're actually intelligent.' (SEAGULL SQUAWKS, DUCKS QUACK) Don't get it, seagull. Out of the hundred people that have a look, maybe one will come and say, 'Oh, not` not to be rude, but what happened to you?' And I don't mind that. I-I prefer that over just glancing and looking and pretending that they're not looking, when I know they are. I find it hard sometimes, because I say, 'How about we go do this?' Or, 'Can you come with me to do this?' And he says, 'No, I don't really wanna go there.' And I say, 'Why?' And he'll say, 'Because there's gonna be lots of people.' And sometimes it just, sort of, slips my mind that it's because, you know, you don't like having lots of people watching, because I can't see it! (CHUCKLES SOFTLY) (RELAXED MUSIC) Have you seen any cows or anything? I haven't seen any cows. Nah. Or sheep. Nah. Or sheep, or horses. You know, animals, in general. Nah. Nah. How disappointing. (CHUCKLES) Everything's so lovely and green here, eh? Yeah. That was pretty funny. What is? You were saying how green and lovely it is,... Yeah. ...and then cameraman looks over and it's all cut down. (CHUCKLES) He's like, 'No, never mind.' (BOTH LAUGH) I was sort of meaning more in the distance. Yeah. (BOTH CHUCKLE) That was brilliant. (LAUGHS HEARTILY) How's that for timing? So, Eilish, when you're driving around, how much can you see around you? It's always been a fairly challenging thing for me, like, how much I can actually see when driving in a car. Yeah. Um, particularly when you're on the open road, and, um, you know, there's lots of trees and things like that. Things sort of, uh, almost blend into one a little bit, and that's why I end up getting so carsick. Could you pop a couple out for me? I think that's safer. I don't really wanna lose any on the floor of the van. Due to where my brain tumour is, I've always suffered from car sickness. Ahhhh... A lot of that is also just because I can't see. When you're driving along and trees and things like that are rushing past you, it actually makes me feel like I'm` I'm going to be sick, because your 'fight or flight' instinct kicks in. That enough? Um, I might have a sip more. Hang on. The reason why our friendship developed into Andrey becoming my (CHUCKLES) personal assistant, for want of a better term, when I wanted to learn how to touch-type, and Andrey said he could teach me how to do that. And then he became my reader-writer for university. It just became, um, more day-to-day things. (UPBEAT GUITAR MUSIC) Having Andrey to` to help me with` with things has made a` a huge difference. Like lining things up in my scrapbooking, which I used to have to always ask my mum to help me with, and sometimes she'd be busy. (CHUCKLES) Little other things, like Andrey cuts my fingernails for me, cos I can't see to cut my fingernails. So, like, the other day I said, 'Can you` Can you cut my fingernails for me?' And so, um, you know, the whole risk of chopping off fingers and things like that. Um, I'm happy to help with whatever. I can't say I'm a good, ther` uh, beauty therapist, but I try. (BOTH CHUCKLE) And` And that one, across the` the bottom. Um, just a little` Little bit of white space? Yeah, just a little bit. Lining things up and, um, little details become quite difficult for me to see. Some of the cards I d` I do, are` They do take a lot more time, for me. And it does frustrate me a lot, just how much time I have to put into things in comparison to what a sighted person would have to put into something. But I think, in some ways, it just means more, cos I've` I've had to put a lot more into it to get it to that stage. Most of the cards I make I give away, but, um, I'm hoping, though, when we move to Taupo, to expand, um, that into selling my cards at the local markets. (LIGHT GUITAR MUSIC) Ever since I was really little, I've always loved telling stories and writing stories. My first book was published last year. It's called Hospital Happenings, and, basically, it walks a small child through three basic medical procedures that most children will experience at some stage in their childhood, which is a check-up, an X-ray and a blood test. I've also, more recently, just been volunteering in public-speaking roles, doing, sort of, inspirational speaking. So I've worked on a local level with some of my charity work. I was on the Auckland branch committee of Canteen for a year, and I did a lot of fundraising and planning events and running events. I just go at 100mph, and that's just who I am. I love it. I love doing that. I love being apart of something bigger that I know will, um, influence and improve the lives of other people. (ENGINE HUMS) We're just five minutes away. Good girl, sweetheart. We're almost there. We're almost there. Then we're gonna go on a boat! Get ready for it. All right. (HAND BRAKE ENGAGES) No diving. No diving. Yeah, no swimming. Nice and steady. Nice and steady. Kia ora, welcome. I'm David. Hi there. Nice to meet you. Loie, come on, sweetie. Come on. She's` I hope she's not too heavy. Here we go. No, she's fine. There ya go, sweetie pie. It's all right. There ya go. There ya go. Can you hop down? There ya go. Good girl. (ENGINE REVS) Welcome to Lake Tarawera. As I` It is` It's the most beautiful lake in New Zealand and the whole world. This is my wife's great grandmother, Guide Sophia. And she was a bit like the Kardashians of the time. (LAUGHS) Can you imagine it? She was famous for being around the famous, because what she was taking people were to the Pink and White Terraces. And there was a geyser at the top, and as the water spilled down over a period of 500 years, left the silica behind and created the beautiful baths here. So people not only came over here because they were stunningly beautiful, but in those days they were looking for the cure for arthritis and lumbago and skin diseases. Lumbago is probably not a word we use nowadays, but everybody had a bad back. (BOAT ENGINE HUMS) (EXCLAIMS) OK, so, the water coming out of the rocks here runs at 86 degrees centigrade,... Far out. Wow. ...um, and runs into the lake here. So you have to find the right place to go in without burning your toes. There you go. Go on. (GRUNTS) There ya go. And just, maybe, don't` don't let her go. No, I won't. And if you come down, you'll turn around now,... OK, cool. ...and you'll come down backwards. First, there'll be one long step, and then there's` Keep going down. Keep going down. You're right. You're right. You're right. And you` There. And then there's two steps below that. So you've got one... And then you can step backwards a little bit. So, there's a stool there. That's the way. And put both feet on there. OK. And if you put your hand on my shoulder, if you want to. Yep. All right. And we step off. Great. Beautiful. Thank you. Great stuff. Oh, there's one of those birds coming a bit closer. Just one of them, though. Where? It's still really small. I really can't see a thing, eh. I just see water. She's coming across here, going down there and carrying on. Oh yeah, maybe. The little black dot. Yeah. The little black dot. I see the little black dot. There's a boat there. Yeah, there is. Yup. See that boat? Yep. Kinda just pointing it out for you. Thank you. Don't know what it's called. Don't know what the writing is, but` 'Sweetwater 3'. Yup. Nah, I-I can't. I dunno, things like that, if I don't have some kind of memory of something... Yeah. Like grass ` well, grass is obviously green. I know grass is green. So, obviously, I'm gonna look at something` Like, it's the same with memory of, like, what you're wearing. Um... Yeah. You're wearing blue shorts. I know you're wearing blue shorts. If you suddenly changed, it would take me a wee bit to register that, 'Hang on, you've changed into red shorts,' or something like that. Oh, that's easy. One mess. (SOFT MUSIC) No, Loie. (CHUCKLES) Eilish has been pushing herself, which is not out of the ordinary for her, but she does` she gets very stressed, and then she hits fatigue. A burnout for me is basically just being in so much pain and being so fatigued and tired that I can't get out of bed. I-I've gone through some really tough patches in the past, where that's actually led to depression and` and feeling quite unhappy with how things have` have been going. Worry for Eilish would be, just, her letting things get on top of her, because she does take a lot on-board, and she does fall susceptible to getting stressed. I think Taupo will be different and help with that. Come on, sweetie. Come on! Hop in. Up you get. Come on. Hey, guys. Hiya. Morning. Did you sleep well? Yeah. Yeah, we slept really well. (ENGINE TURNS OVER, REVS) September 2015, I was diagnosed with SMART syndrome, which stands for 'stroke-like migraines after radiotherapy'. The blood vessels around my tumour have been damaged. I get numbness in my face and tingliness going all down one side of me. Light becomes very painful. My vision goes all blurry and spotty, and the pain is just excruciating ` to the point where I've actually thought I was going to die. For me, each time she says, 'God, that headache today. I just can't bear that,' and there's a part of me that thinks, 'God, here we go again. Is that thing gonna get moving again?' We're in a situation now where if it did, we've run out of ammunition. There's nothing else we can throw at it, and, yet, it's sat dormant for years. But as a parent of a child with cancer, I can tell you that every day is the same. You just wonder. Saying goodbye to my mum was quite difficult. Um, she was quite emotional. She's happy for me, but at the same time, this is the first time I've lived more than two, three hours away from her. Andrey was a` a bit emotional saying goodbye to his mum. I think Pam was` was very emotional saying goodbye to Andrey. I think she'll, um, miss him terribly. And he` he does so much for her and supports her so much that I think it will be challenging for` for her, in some ways, but I think he'll go up and see her quite often. So why is there a detour? Are they doing roadworks or something? Yeah. Yeah, that road going straight to Taupo from the roundabout was closed. Bugger. I was like, 'OK.' As they get older, and Eilish is 21 this year, Andrey's 25 ` he's lived independently, you know, within flats, with friends and things ` it would be wonderful if Eilish had that opportunity. It just depends on her health, and` and, you know, we` we never know what's going to happen. WOMAN: Do they ever clash? Oh yes. Yep. They bicker all the time. They bicker all the time. (LAUGHS) Yes, they do. They bicker over things. They'll be cooking a meal, and it's really funny to watch, because they will bicker. Um, but I think that comes from the security of having somebody being your friend your whole life. MAN: Can we take the harness off too? I don't think it was there before when` Oh, it used to be in the back. Just pop it in the back. Yeah, that's where it was before. It used to be over his nose. No, no, it wasn't. Yeah, it was. It was behind him. I think it was behind him. Check your camera. No. Nah, it was behind him. Later, not now. Later. You'll see, Mark. It was behind him. OK, children. (LAUGHTER) I'm just saying` I'm just saying, look at the evidence. I love you guys bickering. I think it's awesome. This is our everyday lives, and it drives me` And usually it turns out I'm right! (MUMBLES) You guys are gonna have video evidence. Andre, Andre, if we weren't on camera, you know what I'd be doing right now? You'd be walloping me one. No, no, I'd be doing something else. Oh. Something quite rude with my` with my hand. Walloping's quite rude. You know, you know, the` the` Patting me on the back going, 'That's a good sport.' Yeah, nah. You know, no. LEAH: There's a nasty speed bump coming up. Oh OK. We'll go very slowly. (UPBEAT GUITAR MUSIC) Let's go to Taupo! (EXCLAIMS) Ahhh! (BOTH LAUGH) (MUSIC DROWNS OUT CONVERSATION) (UPBEAT MUSIC) Whoo-hoo. Someone paragliding or something up there. Oh, awesome. Can you see that? No, but I'll take your word for it. What a day. Have you ever done that before? Yeah, um, countless times(!) No. Oh. Well, there ya go. Oh, I'm so excited. So excited. (SQUEALS) I, on the other hand, you know,... Yeah, I know. ...always just... You're just too chill for me, man. Yeah. Just too chill. Where's the`? (EXCLAIMS) (HIGH-PITCHED) Excitement. I just don't feel it, eh. I'm excited on the inside. OK. Inside, you're going (EXCLAIMS). Sure. Yeah. (GROWLS) (UPBEAT MUSIC CONTINUES) This way. No, this way. Walk on. Want a chorizo? (CHUCKLES) Leather belts. Auction hammer. Oh, those are neat. Wind chime. Look out. Look out. Yeah. Ooh. Jeez. Thanks. That's all right. Hi there. WOMAN: Hello, how are you? Good, thank you. I'm Monica. This is Eilish and Loie. Hello, Eilish. Nice to meet you. And who have we got here? This is Loie. Hello, Loie. Aren't you just gorgeous? Yes, you are. How can I help you? We're just, um` just moving to Taupo from Auckland, and we just wanted to come and have a look round the markets and, uh, talk to you about possibly setting up a stall in the future. The things you have to decide is how big your stall is going to be. Mm-hm. It's a really neat little market. Uh, it's a family, so we help each other, which is really good. We look out for each other if somebody needs to go somewhere, you know. So, if you fit in here, you'd really, really love it. Which one do you think she'd like the most? Um, does she like her china? Yeah. You've seen how many teapots she owns. Yeah, I was just thinking, like, that's pretty cool. (SOFT CHIMING) So, that's 50? Yeah. Thank you. Thank you. (CHUCKLES) That bird is so cute. Yeah. Time to go home, go see Mum and Dad. Yeah. # I feel love when you're around. # You pick me up when I'm feeling down. # The stars align. # You broke the mould. # Nothing comes close. # When you're around, you lift me up. # My guiding light when things get tough. # You feel so good, your way so fine. # Take my hand. I'm yours. You're mine. Come on. You're home. Come on, honey. # You are the sun. # You are the only one. # HIGH-PITCHED: Come on. Come on. Out you go. Out you go. (UPLIFTING MUSIC) Beautiful. (WHISTLES) Loie. Here, Loie. (MUSIC DROWNS OUT CONVERSATION) (SOFT CHIMING) Captions by Chelsea Thoresen. Edited by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017