. Captions by Antony Vlug. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017 What makes life worthwhile? Is it the use of your arms or legs? Is it being able to communicate, see and hear? I thought losing any of this would mean my life would be over. The truth is ` we don't have control of our destiny or what happens to us, and when things happen, we're forced to look another way. That's the story of my life. I am C5-6 tetraplegic. Which means all four limbs were affected. I have limited function in my hands and legs. I mean, I just tell people I have a broken neck, and that, sort of, seems to resonate with most people. Except Americans, who think I often say 'broken leg'. (LAUGHS) When I had the accident and broke my neck, I guess, it just completely flipped my whole upside down. I think initially you just go into denial. I spent a long time thinking that it would definitely get better. I just didn't have any understanding of what paralysis was. It was a big, massive life change. (RELAXED MUSIC) Hey. Morning. Sleep OK? Yeah, it was OK. Good. Yep. Ralphie does the whole waking up thing. Yeah, he often does. Yeah. Would you like a cup of tea or toast? A cup of tea and toast. I might grab that for you. Thanks. I've always, sort of, been one to push myself and push the boundaries of what you could achieve. There you go. Thanks. I have this, kind of, strange, kind of, twisted side to me that likes proving people who think that they're right wrong. A little bit? Yeah, that's all. At the moment, I'm on 24-hour coverage. John's my main person. I have other really awesome people that help as well. We just all, kinda, work in with each other. I'm here about five days a week, and I stay overnight. And really, I just quietly go about helping her get on with her life, sort of thing. Maybe the other one. Yeah. Cool? Yep. Cool. Thank you. But I met Claire through a friend on Facebook 10 years ago. We just, sort of, struck up a conversation just talking online, sort of, found we had some, sort of, things in common. You know, we talked a little bit` got to know each other a little bit, and then she mentioned she had a broken neck, and I really didn't know what that meant. See how you going. The one thing I, sorta, remember telling my friends was, pretty much, she can do anything, really. It was just a little bit slower. Yeah. That's close enough. Cool. Right. Let's go. All right? Yeah. He does a lot of personal cares as well. There are a few people that I've accepted that I need that sort of help from, and because I've known him for such a long time, he's one of the few that I feel OK about that with. And he's just` He's always been there holding my hand, making sure that everything was OK. He's just a very special, incredible person. Right. Today I'm going out to Burwood Spinal Unit and meeting a young guy called Liam. I've heard that he's a really lovely person. OK. Cool. You got it? Yep. It took a long time to get a job. I graduated from design school, and after a few years, I managed to get a job down in Christchurch as a graphic designer. It also meant that I could do volunteering for the New Zealand Spinal Trust. They ask you to do interviews, talk to people. Oh, cool you got a window in here. Yeah. It's got mud on it. Yeah. Oh my gosh. Hard core. Oh my God, that's crazy. Slid over and hit my head on a wooden post. If I didn't have this and my neck brace on, I'd probably be dead. Yeah, for sure. I did my accident two months ago today. You` Because you were a` was it mountain bike? Yes, yeah. Cos what was your level ` do you mind me asking? Uh, T3. Last week, came here with the doctor and found out it was over 90% severed. Wow. Which, yeah, was a bit of a blow, but... Sure. Yeah, still, fingers crossed. I think when I first had my injury, I was, um,... You know, I was just like, 'Oh, I don't need to know anything.' I'm, you know, kinda like` I was quite` not arrogant, but I just sorta felt like, 'I'll work it out myself,' you know. 'No one needs to tell me anything.' And once you go out into the community, you suddenly realise, you know, that life is a little bit different to how it was, and there will be things that you need to do differently, and that's kinda when you start developing, you know, the, kinda, questions, I guess. In a way, I, kinda, wish I knew more people back then. Especially as a woman, you kinda feel like you're the only one in New Zealand, you know? One of the biggest things has been recognising that helping other people is a really good way of helping yourself. I see it now as someone who had never addressed the grief of what had happened. You have an injury, and it changes your life in such a profound way, and yet you're just, sort of, told to get on with it. It's like, 'Keep calm and carry on.' There has to be a moment when you do acknowledge it and you do realise what's happened, and I never did. Using a wheelchair, I was terrified of going out anywhere. I always felt people were staring at me and judging me. If I went to the mall or anything, I would stare at the ground. And so I never made eye contact with people. I didn't see myself as an attractive person, and I guess I just sort of hid that side. I pretended that I was normal. I pretended that everything was OK. But inside there was a lot of grief there, a lot of anger. If I could talk to my 17-year-old self fresh from hearing I'd always be paralysed, I'd tell her, first of all, I'm already a survivor. I'd say beauty is a state of mind, and no matter what I look like, if I took pride in my appearance despite my flaws, I'd feel better both inside and out. So, I'm going to the airport to pick up my mum. Really excited because I love it when she comes down. When` She lives in Wellington, so coming to Christchurch, you know, it's always checking out grabaseat. She is actually one of my best friends. She's an awesome woman. We always have heaps to talk about. One thing I didn't tell you about my accident is exactly how it happened. Hi. Hi. Hi, sweet. (CHUCKLES) It's so good to see you. How are you? Yeah, really good. Looking good. Thanks. So are you. I love those boots. She was my third daughter. She was gorgeous. She was a lovely, lovely baby. And she was a fantastic... child. Looking back on it, it was quite a utopian childhood. We lived outdoors mostly. We lived by the sea, by the beach. You know, we had a boat. It was just fantastic. As a teenager, she was challenging sometimes. And I think that's where her strength has come from. She was a talented artist. 98% in school C art. She was also a really good musician. She played piano beautifully. I was 17 at the time. I was in seventh form, which is the last year of school. I was preparing to leave home, anyway. I was ready to start the next chapter of my life. I had an interview at Unitec. We were driving from Whangarei to Auckland. You know, I even remember things like before I got into the car, I remember running to the car and thinking in my head, 'I don't run enough these days. 'I should be running more, cos it's fun to run.' The night before had been her final dinner and farewell for her class. That had gone on till fairly early hours of the morning. I was teaching at the same school where Claire was, and I was very tired. And we had an appointment at 3 o'clock. And I was in the backseat. I was lying down. I didn't have a seatbelt on. I had taken it off. We got as far as Wellsford. And I wanted to stop, but, of course, we had the pressure of being at the appointment. And I fell asleep. The car rolled down a hill. I'd broken my neck, but I was still conscious. I couldn't move a thing. And I just had no idea about how serious it was. It probably was later on that it, kinda, occurred to me, 'Oh my gosh, this is paralysis. 'Like this is` You can't repair this.' And just, you know, you have this pressure to be somewhere, and... I should've just stopped. You just don't know. A matter of seconds, our lives where just completely changed. You feel incredibly guilty. And that's a guilt that I just have to live with. Five. Six. I never placed any limitations on myself. Maybe it was because I was in denial, but I always thought I'll still be able to do design. (INDISTINCT CONVERSATION) Excellent, Claire. OK? Forward. Having this catastrophic thing, kinda, happen, no one was prepared or no one, kinda, knew how to handle the situation. We quickly realised that I couldn't go anywhere on my own; I would need support. (INDISTINCT CONVERSATION) And because I was 17, I trusted my mum, and so I just said she would need to do all those sorts of things. All my mum knew was that she had to be with me. She put my needs first and even ahead of her needs and my dad's needs. I got into design school in Wellington. So I just assumed she'd come with me to Wellington. And my dad decided to stay in Whangarei. He'd a really good job there. Well, they were married for 26 years. They ended up splitting up. OK. Thanks. Wow. You all right? Yeah, thanks. OK. Look at that. It's gorgeous. Oh, it's gorgeous. Every time I come along here, I think about how this, sort of, reminds me of, like, you know, walking along Oriental Bay, and it was a great, sort of, place to go after everything that had happened and` I was trying to work and keep my job going. In the end, it was hopeless. So I had to leave. And so that meant quite an upheaval... to move from Whangarei, and... Cos they certainly don't have much in the way of disabled accommodation for students. Yeah, I think at that age, it's really hard to, kind of, put everything into context, so it was very easy to blame my mum, even though, you know, I wasn't wearing a seatbelt. You got it? Yep. You OK? Yep. You sure you're OK with this bit? Yep. Whoo-hoo-hoo. It took eight years, which sounds like a terribly long time for you to hold a grudge against someone. Ralphie, come. Come on. I was doing a self-improvement course with my sister, and they said, you know, 'Are there any issues in your lives, think about this if there's anything wrong with a particular person, 'and we'd like you to write a letter to that person.' OK, OK. Where's Claire? Where's Claire? And I remember I went home, and I woke up at about 5 in the morning, and I stated writing my mum a letter. I was just, sort of, going through it, then it was like, 'Oh my goodness, like, she didn't cause the accident.' She would have done anything to get me to that interview. She would've put herself through pain even if it meant driving tired. Claire, where is she? Good boy! Good boy! So I wrote her a letter, and I said, 'I want to say I forgive you, but there wasn't anything to forgive, 'because it was just an accident. It was just a moment.' Ready. OK. Smile. (CHUCKLES) How are you? Good. Blame, I think, is something that's a human reaction to a situation that you can't control, and I completely blamed her for many years afterwards. Yes, it was a tragedy, and it was a long journey to get to where we are, but we've learned so much about ourselves, about each other and about humanity. Because I know forgiveness is possible even in seemingly impossible situations. I remember thinking after my injury that I'd never live in a cool house or have the same opportunities that I might have had if this hadn't had happened. I couldn't have been more wrong. I saw a TV documentary early on of a doctor who had a spinal cord injury, and he lived in this amazing house, and I remember thinking, 'If he could do it, I could.' So with little to no hand movement, I've got my design degree and masters, and I worked my arse off for the dream of one day owning my dream home. Hello, darling. Hi. She was working a full-time job. She'd be up at about 5 o'clock in the morning to get herself ready to get to work by 8, and she was absolutely determined that she was going to pay for it independent of us. I lived off 2 Minute Noodles and saved everything I had, and finally two years ago, designed and built my house. It was incredibly hard, but I did it. I started experiencing a lot more pain. That was a red flag for the doctors spotting it that there was something wrong. (CROSS ALARM BEEPS) So, that's where C4 cafe used to be. Oh, yeah. Used to go there heaps. Claire's injury was 20 years ago, and just with time, the, sort of, supportive metal work and the bones around the neck degraded. Some of her vertebrae were disintegrating, essentially. If she did nothing, it would be quite serious. The worst-case scenario ` actually kill her as, kinda, bits of her neck slipped and cut further into her spinal cord. I guess, when I see the city, and you see all the buildings and you see the facades, you see the crumbling walls, I can relate to that. There is, sort of, sense of, you know, I know what that feels like. Yeah. Unfortunately, some things had happened during surgery. So it ended up being that the operation was medical misadventure. A screw was put in the wrong place, and it did cut into my cord, and I did sustain some more spinal damage. I was a graphic designer. I did a lot of finicky design work with my hands and my arms. But I really needed those triceps and that wrist function, and not having that meant that I couldn't return to the one thing that I thought had given me purpose, which was my career. Before the operation, it was pretty bad, to be honest, yeah. She'd been working really hard building the house, trying to manage her job full-time, you know, the earthquake situation ` there's a lot of things compounding at the time, and, really, I think she was emotionally burnt-out. I'd broken up with my husband of the time. And there was a lot of stuff behind that that was extremely confronting. It all, I guess, impacted on the post-traumatic stress. I had nightmares about the accident that were rolling in together with al the earthquakes and the aftershocks. And it just reached a point where I was like, 'I can't do this any more.' I just wanted everything to stop. It was suicide, but in my head, it wasn't. It was just stopping. She was talking about ending things. Being around that is very difficult. You, sort of, feel a bit responsible for making sure that doesn't happen. We were talking daily. And she was telling me what she was going to do. I was just waiting for the... police or someone to knock on the door. I was just deeply unhappy. So I started looking into assisted suicide. This was potentially something that I might qualify for. I discovered this place in Switzerland that might be a possibility. Once I'd, kinda, decided that, it was actually, like, a relief, because it was like, 'Oh, there's an end to this.' Part of the reason behind our travelling last year was to take a break. Claire still was not in a very good space, and she was telling me, you know, 'When we get to Switzerland, I'm never coming back. 'I'm not coming back.' And I said, 'Well, I'm not going. I'm not going. I'm not going with you if... 'this is` There's a chance that you're not coming home with me.' And so we, sort of, made a deal. But that seemed to be a turning point. I had the time to focus on myself. I guess, to, sort of, put it in perspective and to try and grieve, in a way. But that took 20 years. It's taken me to become more disabled, in a way, to just suddenly realise that there was another way. Maybe just rein him in with the... And I think the whole journey for me has been recognising that... (SIGHS) things can change, you know. I suppose a state can change, but that can be very, very difficult to tell someone. Life lessons. It's possible. You can work full-time. But I think you need to acknowledge that you need some help with that, especially if you have an injury as high as mine, that you are gonna need help, and that's OK. Ralph. Legs. How about that? That's all right? Yep. Certainly, you know, Facebook or social media, you wouldn't see any pictures of her in a chair, and I think a lot of her friends that didn't know her wouldn't have even known she was in a chair. Hey, look at the camera. She had an Instagram for her dog initially. That's kinda how she got into it. But then she, sort of, started posting some pictures of herself in a chair, which she'd never done before. In one sense, it, sort of, feels like I'm coming out. In the same way maybe as someone who was gay, or something like that ` you know, reveals themselves. They just said, 'Oh, we've been waiting so long to see you.' It's so crazy how you always crop yourself. It's just who you are. And the more I seem to be posting pictures, the more, kinda, feedback I was getting from people. 'You look great in a chair.' 'What do you do with your life?' It was really healing for me to open up about my life through the pictures. People started following me and telling their friends about me, and that's sort of how it's got to the point where it's got to now. There's, like, nearly 10,000 followers` or nearly 10,000 people out there that, you know, are actively, kinda, looking at my images. I used to be so ashamed of my freckles. At school, the boys would call them 'fly poo'. That was my biggest problem in life ` before my broken neck happened. Also, there's this great life hack for people who use a wheelchair. You can buy cheap but good-looking shoes as it's not like they'll be put to the test too much. Gotta be some benefits. I'm not a model, and I'm far from perfect, but dressing up is cool, and rocking new heels is great, and finally accepting my body is liberating. We're bringing sexy back. The image of the disabled is being reinvented. The epitome of sexy. It's beautiful ` the tartan, everything. Yeah, I mean... Certainly, if you get someone a present like this for their birthday, they're gonna be very, very happy. Spill your coffee, wipe it off. It's beautiful. Um, yeah, I mean, this is kinda what I'm thinking ` not a lot of thought, maybe, has gone into the design, but very practical. Given the surgery impacted my hand function, I could no longer keep my job as a graphic designer, and I had to rethink my career. Hmm. (SHUTTER CLICKS) So I'm combining my background in design and health science into a PhD. I'm looking at the way society views people with power wheelchair use. Certainly, the research shows that because it's such a physically big part of who they are, that's often what people see first is this big cumbersome machine. We've developed a manual chair, like this one ` it's carbon fibre, it weights 2.5kg, it's fantastic. But with a power chair, they're very heavy; you can't use them unless you have a van; and aesthetically they haven't come very far either, so they still look as they did 20 years ago. It would be great to come up with a design that incorporates the latest technology, but also brings that price right down. I think there's terminology out there that's focused around wheelchair use. If you read an article about someone in a chair, they're suffering. Society as a whole tends to view someone with this injury in an asexual way. I often hear the term 'she's bound to her wheelchair'. The slightly twisted part of my personality drums up images of being tied to my chair. I even told a health professional who asked if I was wheelchair-bound that I wasn't into wheelchair bondage and discipline. I use a wheelchair just as I use a car or an oven. You know, it's a tool, a piece of equipment that helps me get around. I want to design wheelchairs where you see the person first, not the chair. OK. You all right? Yeah. We're going in here? Yes. How did I get from someone who was looking into assisted suicide to where I am now? OK, cool. Yeah. You're cool? Yeah. OK. It's like I've found happiness for the first time, and part of that happiness is this acceptance of who I am and what has happened to me. Yeah, I had the accident. It's really given me a chance to change things for the better for a lot of people, and you can't really put a price on that. So I think I'm really coming to terms with the fact that maybe I wouldn't change it. So that's the story of my life so far. If there's one thing I've learnt ` if I can dream it, I can make it happen. Physically I might have limitations, but I can adapt, evolve, learn from my failures and keep dreaming. Given what I've been through, every moment is one to cherish, because we don't know what lies around the corner of time. Captions by Antony Vlug. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017