1 Captions by Desney Shaw. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 INSPIRATIONAL MUSIC Morning. Are you awake? Yeah. One, two, three. I don't have any control over my body. I need somebody to help me with everything. I am 37 years old. All right, sweetie? I've never been able to speak. This is what I imagine my voice would sound like. My whole life, people have treated me as if I don't have a brain. But I know I'm smart. I rely on technology to communicate. This is how other people hear my voice. ELECTRONIC VOICE SPEAKS All I can control is my head. It's how I operate the communication box and my wheelchair. This is my life. It's all I have ever known. I may never have fed myself or dressed myself, but I can still make choices. Track one? Uh, which one? This one? I wish I could do things myself, but this is how things are. Purple? Caregivers are just like my hands. Done? Shakey-shakey. (LAUGHS) Sip of drink? I like things done in certain ways. Caregivers don't always think about what I want. This is the only body I've got. If I don't love it, who will? Like every girl, I dreamt of one day getting married. I was born normal. When I was 3 weeks old, doctors discovered I had cancer of the kidneys. On the operating table, I died three times. MACHINE FLATLINE BEEPS And, bam, cerebral palsy. I never even got to crawl. But my world changed when I was 7. They put me in a powered wheelchair for the first time. The chair had to be specially made, and they weren't really sure if it would work, because it had to be head controlled. I could hardly lift my head. But I still remember the first time they let me control the chair by myself. It was one of the best days of my life. When I was young, Mum and Dad sought out any therapy there was. I'm just gonna hold it there ` the other arm. I probably had an appointment every day. I had so many different types of therapy. We've been through these routines on the bed. I'm gonna show you how she got into that position. Anthea, can you lift your arms up or do something with your arms? Oh, well done. OK, now just move them around. That's part of it. Yay. For a while, I even walked for short distances with a frame. It was such a buzz being able to look people in the eye. That's really good. She likes it. Just hold it there for a while. As I got older, it hasn't been so easy. My cerebral palsy has gradually gotten worse, and I have a lot more spasms. It really affected my confidence. Then I found boccia. And it turns out I'm really good at it. Well, her game has improved, because she now is getting the idea that it isn't just to get the ball close to the jack; she's thinking about all the consequences of the fact that she has to throw six balls. Boccia opened up my world and brought some unexpected people into my life. MAN: Oh, here's trouble. Hi, Trouble. Did you miss me? You had a CP moment? Now you've cut yourself. This is why I drive your van. It stays in one piece. All right, go show me the damage. (CHUCKLES) How in the world did you attack that door and do that? It's, like, 3m apart. Oh, from time to time, Anthea just tends to have a CP attack, as we call it. Cos she controls her wheelchair in her head, she'll just go full speed into whatever's in front of her, and as you can see, this has suffered damage today. So they'll have to get totally replaced, so I'll just have to work some longer hours. You're a worry. Anthea, to me, is someone who's very warm, loving, caring, kind, always smiley, always laughing, always happy. There's never a sad, boring moment with her. We were both already dating people. We met through being part of the international boccia team at the time. I actually don't know if she saw me at first, but... must've caught her eye somehow. As we got together more often for training camps, we just grew fond of each other and... really started to like each other, and our relationship grew from there. Yeah, in the beginning of the relationship, there was that moment where I sat down and thought, you know, 'Do I want to be with Anthea 'with all this care, responsibility and... everything behind it, 'or do I just close my eyes, take a leap of faith?' The 28th of March 2011, we got married in Rarotonga ` the most perfect day of my life. Ready? Comfortable? Michael always said he'd like to be my carer. He is such a devoted husband. Sometimes I can't believe how amazing he is. But I don't want him caring for me full time. I want him to have other things in life besides me. I want him to be around other people as well. I don't think it would be healthy for him to care for me full time. Compared to most caregivers, Michael has a real advantage, because he knows me so well. Is that better? She has her basic communication ` yes, no, OK. She says yes, she looks up; no, she shakes her head. Set you up? And then the more time you spend with Anthea, at the end of the day, you hardly even need her communication box ` just on the really bad days that I don't understand her; then I get her to type it out. Give me your leg. Give me your leg. Yeah, give me your leg. I need to be strapped into my chair because I have strong spasms. They can be scary, because they throw my whole body around. Want me to zip you up? When you have your spasms. Want me to set you back again? You show them who's boss. A spasm is an involuntary reaction of the muscle. It doesn't feel painful unless I hurt myself during it. You wonder why you're always breaking your chairs. All right, here comes your headrest. Click. Is that one in the right spot? I'm crazy about boccia. My dream is to represent NZ. Michael is my ramp assistant, and I think that gives me an advantage. We already have an unspoken communication. We make an awesome team. At the moment, Anthea's just trying to line up the ramp with the jack. And I've just got to listen to everything she says. She's the boss. (CHUCKLES) Boccia is difficult to describe. It's a bit like petanque. The aim is to roll six balls as close to the white target as possible. Ooh, nice. During a game, Michael is never allowed to turn around and look at the target. He has to concentrate solely on me, and I have to communicate where he should position the ramp. Head movement, eye movement ` it tells me left, right, up, down. At the moment she's looking at the ramp and the floor and telling me to move it over. And move the ramp to the left. Just follow her head, really. To the right. Left a bit. Left a bit. Right a bit. Left a bit. Fractionally to the right. Now she's telling me to put the ramp down. And up again. Down. Now she's just told me number four by looking up, which you don't actually have. Unfortunately, there's a time limit in boccia. End of the day, it's a` it's a team thing. So it feels good when she wins and I... I know I've done a good job. I really need to practise as much as I can, because coming up soon is the Oceania boccia championships in Sydney. Your hair's going all wavy at the back where it's getting long again, eh. You might have curls. We could let it grow, get you some curls. Nah. (CHUCKLES) What I like most about myself is my eyes and my smile. So I guess with my hair, I'm always trying to make sure that it complements the rest of my face. Long hair is too difficult. I think women are pretty hard on themselves. We always wish we could change this or that. We want to be perfect. But if I could change anything, I wish I could speak. So, did you holiday out of Auckland? No? Where'd you go? Overseas again? No. OK. Beach? Just away. Just you and Michael? Ooh, very nice. Like? I think she's naturally very beautiful both inside and out. It's quite good. Don't give me that puppy-eyed look. Don't give me that puppy-eyed look. < WOMAN: So you're a lucky guy? I say that to her every day. She never believes me. That's pretty true. We're soulmates. Even when I'm work, you can still feel me. Michael works in a trophy shop just up the road. He works 40 hours a week, Monday to Friday. And he's really good at what he does. This is a trophy that we engraved for Lydia Ko. North Shore good golfer, she is. We actually do quite a few for her every year. Be good if Anthea wins a lot more trophies. You know, she's got over 40 medals already at home from all her boccia and various other things. I hope she wins one really big trophy for... hopefully for boccia. And then she'll bring it to me, and she'll want me to put her name on it, so,... yeah. I love getting out of the house. I can't wait for the weekend, when Michael and I can do fun things together. Now, just remember, there's water in front of you, so don't go flying into, eh. (CHUCKLES) It's not that cold. Well, if you` if you start doing some star jumps, you'll be right. Oh, you're running me off the road again. (SCOFFS) (LAUGHS) Do you want to feed the ducks here? All right. Just remember, I can't stop you if you go in there. And you've got one, two, three, four, five, six, seven, eight, nine straps to undo. OK, one for you. I said one, not three. One, one. What? These birds here. Do you want to break one up? Go like that, all right. And then tell your hand... There. Now break it up. (CHUCKLES) When you're ready. Are you stuck? Which way are you going? (LAUGHS) Hey, um, that's my foot. Well, I didn't know which way you were going. Ah, thanks for that. See, now you got yourself stuck, didn't ya? Trust you to not know which way to go. Michael's not perfect. I know I can be clumsy sometimes, but he just keeps teasing me and teasing me. I'll just powerwalk back. Come on. (CHUCKLES) Nah. (CHUCKLES) (LAUGHS) Oh, it's a hill! Oh, what a shame. Make sure we got everything. I'm getting excited. Today we are going to Sydney to compete in the Oceania boccia championships. Hope that's everything. You sure? Once it's closed, it's closed. Good. It's a long way to fly back. Travelling with me is never easy. We've got to take a lot of stuff. Here we go. There, that's it. CAR HORN TOOTS FUNKY MUSIC This is the biggest competition I've been to in seven years. The last was in Perth, and I got fourth. Finished? Ready to go? Just about? As a team, we've been a bit out of the loop when funding to support boccia development was cut. Hey, boys. How's everybody feeling? Oh, this competition is pretty big. Um, we've got people from the Asian-Pacific community, like Singapore, Hong Kong Japan, China and, of course, Australia ` host country. Big team, Australia has. And should be pretty tough. Well, our strategy will be to give it all, give it our beans, play hard, play fair, though, and just do the best we can. Hopefully all this training's paid off for us. Are you warming up yet? Still cold, still cold. FUNKY MUSIC MUSIC CONTINUES I'm Michael. I'm Michael. Michael, nice to meet you. Good hand. Good hand. Good hand? All right. Good hand. Good hand? All right. I'm Ashleigh. How you doing? That's` That's my wife, Anthea, the missus, significant other half. I'm just trying to stay focused, visualise my plan of attack, because I'm up against Australia's best BC3 boccia player, Daniel Michel. APPLAUSE He's only 18. I'm 37. I hear Australia is putting a lot of resources into developing him. He's only been playing for a year, and he has a flash as ramp too. Well, for me, it's pretty hard, because, of course, I can't look at the ball, I can't talk to her, I can't do anything. I want to know if it's a good game. Sometimes she'll look at me and smile or look at me and shake her head. It was a good start. But Daniel is amazing. He's quick and accurate at setting up his shots. I'm getting worried. I've only got a certain amount of time to set up each shot. BELL DINGS WOMAN: 30 seconds. BELL DINGS BELL DINGS 30 seconds. I feel like I'm letting the Kiwis down. APPLAUSE The coach wants to do a debrief about what happened. Happy to do a debrief? The first question ` what do you think went well? Not a lot. Not a lot. Not a lot. (CHUCKLES) Don't be worried that there's 30 seconds, um, left, because, particularly, the score clocks make a sound at a minute and 30 seconds. At least that gives you an indicator. And so Mike knows you hear that sound, you know, if it's in that last minute, you need to pick up the pace a little bit. If it was a long end and you were playing the whole end at nine, I'd probably say, yeah, be really fast and deliberate in terms of having to get those extra extensions on. Um, but I think, you know, you're not losing too much time, and at that short end, having 30 seconds is` yeah, I think you can feel comfortable about it. I'm always proud of her. Winning or losing, I'm always proud of her. She goes out there, does her best. Well, you did some good shots then, eh. No, that's good, that's good. You're happy with yourself? As long as you're happy, then I'm happy. She's honest and loving and caring and warm and happy and... You know, you never really see her have a bad day, so... Captions by Desney Shaw. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014