1 (UPBEAT MUSIC) Captions by Amenda Quang. Edited by Ingrid Lauder. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017 (UNSETTLING MUSIC) This is the beach where I broke my neck, on a sandbar, when I dived off my surfboard. (REFLECTIVE MUSIC) Mama's gonna go for a swim in the ocean today. Is that a good idea? Do you think I should try and see if I can see some mermaids? Today will be the first day that I've actually swum in the ocean. And I'm just... this is kinda where my heart is. Ooh, I've clipped myself. Ta-da! (GROANS) Sorry, love. A delivery of hot tetra complete. Comfy? Yeah. One more. (HOPEFUL MUSIC) Get going. (EXCLAIMS) You're kidding me! (ETHEREAL MUSIC) (INTRIGUING MUSIC) I'm currently in the Auckland Spinal Unit, and I've been here for a week. I'm paralysed from my necklace down. I have limited hand movement. I have no ability to go to the toilet, to get dressed, to do anything that is normal. So everything is being rewritten, and there's a new track for the way my life rolls out. Yep. Right. Right. Let's go. My little girl, Lolo, she is 3�. She talks to me a lot about how she doesn't like that I'm broken and wants to make me better. She says, 'If I give you good food and then if I look after you, 'you can get better and we can ride our bike again.' I'm just gonna do everything I can to get back to the kinda life we had together before. We can't go too fast down here, cos Mama's driving is not that good yet. I'm a sociologist. I've just finished my master's at university, and I'm heading for a PhD. I have a gorgeous partner called Gemma. She gatecrashed, with a bunch of her mates, my 30th birthday party, and we decided actually... we kinda liked each other. And both of us` I had a husband at the time, and she had a boyfriend at the time, and we decided, 'Let's just not have them any more.' So we've been together for 11 years. Yeah. Gemma had been supporting me through university, previous to me having Lola, and the plan was, the minute I've finished my master's, she was gonna have a baby. I would then begin working and she would be the one who would be the carer of our kids. Look at her. Oh my gosh. She's smiling. She's smiling. Oh my gosh. Look at her. There's your mama. Look at you, cute baby. Oh my gosh. I broke my neck when the baby was 6 days old, and so Gemma hasn't really had much time to enjoy being a mama and just to be able to sit still and hold Ziggy and just be looked after and to be nurtured, which is everything I wanted for her. I'd just come out of hospital two days earlier from the C-section, and was just getting used to the whole baby, new baby, and then Amanda had the accident, so it was that sudden gain of a child, loss of a parent, and suddenly being there to handle Lola and Ziggy on my own. So it was all very huge, scary,... and not knowing what would happen to Amanda. (CRIES) Can't` Can't` Can't pick her up. I can't comfort her, and that breaks my heart. There you are. Yeah. You reckon? Does it work? Done. Yeah? (CRIES) You've got it. Yeah. Eh, bubs? Yeah, I got her. This is the first time I've held her like this. You get scared that it's just gonna be me raising Ziggy, (SNIFFLES) but when I see bits like this, I know Amanda's gonna be involved too. (CRIES) You have to pick up and you have to keep going, cos Amanda's awesome, and we're awesome together, and the kids need their mums. Both of them. So it'll be different, but it's... it'll be cool and we'll work it out. Bib on. (INDISTINCT CONVERSATION) Let me see. No, more than that. It's probably a two-hour mission, from waking up to being ready to go anywhere. That's good. Thank you very much. Now the mission of eating. It does your head in, though, just needing so much help. I can't cut my toast. I can't spread things. And that's yet, but right now, I'm completely dependent on other people's help for everything. (MELANCHOLY MUSIC) (DISTANT CHATTER) And then I look at the programme and go, 'Right, what have I got to do to get strong so I can get out of here and get back home?' (EXHALES) What a mission. So each day you're doing upper-limb class and physio therapy, and for me, hand class. So I have at least five or six hours of commitments every day. (DETERMINED MUSIC) All right, so give me a hug. I've got ya. This being moved less than a metre, it blows me away that I need another whole` another person to strap me into a hoist to get from A to B. It's mind-blowing. I've` I never have known this world. So you're gonna go up, Amanda, on to the side of the bed, and I'm gonna be behind you, so when you land, you've got that support from behind. All right, cool. I need to be able to lift myself, all 72 kilos of me, which currently has as much strength and stability as a newborn baby. I need to find my centre in all of that jelly feeling of no core and no balance. And those` The drop forward, it's gonna be a big drop forward if I make a mistake, cos I can't rescue myself. Yep, perfect. Got you. Cool. This is like sitting on a Swiss ball with your feet off the ground. So absolutely wobbly. So what I want you to do is I'm gonna be in front. I feel like I'm gonna pass out. (EXHALES) Just relax back on to me. (EXHALES) Just relax your arms. OK. (BREATHES DEEPLY) You OK? Yup. (SIGHS) It's weird. I was all right, and then I'm not. That's really strange. Just give yourself a minute. Being upright is quite difficult in the morning. They've had to give me drugs because I have no stomach muscles to keep my blood pressure up. I have naturally really low blood pressure and I was really fit. And then you chuck a spinal injury on that and then you have scary blood pressure. That means every time you sit up, you just wanna pass out. I want it to be nice and controlled, rather than just throwing yourself forward. (LAUGHS) Yeah, funny that. OK, look down to the right. Use those nice strong lats. Yes. Good. Well done. That's great. And then momentum. Dig in. Use those lats. Good. I've got you. I've got you. Cool. Well done. Look. I'm sitting up by myself for the first time since I've been here, and although it's probably a little bit weird-looking, it actually feels really nice. I feel human. For me it's about getting home and being able to be part of the family in the way that I was. I was a chef before, and I do all the food and I garden and that's my role, and I need to get back to that. So I got to find a way to make that work, cos I love it, and it makes me happy, and it makes my family happy, and it's my job. (DETERMINED MUSIC) Fact that I so want this and I'm so focused on this, that's the way it's gonna work. I think a bad attitude would probably be the only thing that would stop you. This might look really slow to you. I'm actually getting faster, and I'm getting better at it, and my hands are getting stronger and used to holding these things. (GRUNTS) I will do this a thousand times a day, if it means that when I get home that I can be a productive member of my family and not a drag. We're going on an adventure, baby. This is our first time. This is the first time I've been out of here. (GASPS) Yay! It's huge. You realise how broken you are when it requires a van with a back-end loader and two people to drive you to the gardens. That would be bad. Yeah. Did I eat too`? Did I eat too much lunch? No. Am I too heavy? It's really heavy. Straining under your weight. (LAUGHS) All right. I'm back on again. ...so that these are even on these tracks. I can't see the wheels. OK. Cool. Yeah, cars were always about freedom, and now there's three people required to get me in one. Little bit distressing. The lack of control will be the hard bit for her. She's normally the one who drives. She's the leader. She does it. Freedom. Freedom in 10, nine, eight, seven, six... Yeah-ya. Can I chase you? Jump down and I'll chase you. See how fast I can go, eh? Right get ready, set, go! Go fast! (GRUNTS) Go! It's quite upsetting. Although it's lovely to be out, it's upsetting. I can't catch my girl. I can't throw her over my shoulder. I have to work really hard to be more. I can't come, bub. (SQUEALS PLAYFULLY) There's stuff that I need to be aware of that I would never have thought twice about ` steepness of anything. Yeah, I just have to be careful now. It's odd, cos I was I was 6ft in real life, or just under, but there's a way of engaging with the world when you're big and strong and tall, and then now I'm on wheels and I'm motorised and... I don't quite know where to put it, cos I had a great life, and I think I'll have a great life this way too, but it's gonna be a different life. Ha-ha! There's probably more anger than she lets on to people, and she's sad. She's gutted. In terms of the realisation of where you're at, the adrenaline starts to wear off, and it's almost like a leaf floating down from the sky. You have this kinda feeling ` whoop, whoop, boop ` and reality sinks in quite slowly, and all of a sudden you go, 'Huh, so this is it.' You're super high! Yeah. Up and away. Lola and I talk quite a bit about me being broken, and what that means for her and` and... Press the down one. We talk about what happened on the day, cos she was at the beach when I broke my neck, which was really traumatic for her. I could hear her in the background crying when I was lying there. Lola? Hmm? Do you remember when Mama broke herself? At the beach. It was pretty dumb, eh? No, it was sad. You were sad, weren't you? And I was sad too. You're gonna help Mama get better. Hold on, hold on. (BABY CRIES) OK. All my girls have uprooted their life to come here and are currently staying with some friends. Um, and we're trying to get Lola into a kindy. We're trying to get some normality, because the reality is I'm gonna be here for at least two to three months. Home is this gorgeous little place in Tauranga, and Gemma and I have owned it for maybe seven years. We're obviously intending to stay in beautiful Tauranga and have lovely times there raising little baby, and then all of a sudden, Gemma has to uproot our whole life and come up to Auckland. Our house needs changing, but do we look at somewhere else? Because we lose all our garden. We lose what we love about that home. (SINGS SOFTLY) It's not just that whole bigness of what's happened to Amanda, it's what's happened to all of us, and we're not gonna go back to what we were. It's too big. At the moment, you feel pulled in every single direction, so I need to protect me and make sure that I can hold the family together still. (POIGNANT MUSIC) (BIRDSONG) (HUFFS) So each of the PT sessions now is purely focused on getting my, um` my transfers, um, because when I leave this ward, I never... never, never, never, never want to see a hoist again. A hoist, for me, is dehumanising. On the bottom? Or right underneath? Gemma needs to learn how to hoist me from my wheelchair to the bed, to learn how to do that safely, so that's kind of exciting. At least we don't need anybody else. We don't need a carer. We just need her. (WHISPERS) You're not light. (CHUCKLES) (WHOOPS) That's why I never want to see one of these again when I leave. Right, so what's the plan, then, girls? Bring it on. Who's your daddy? Good! Well done! That way. Yup. Two. Go, go, go, good! I didn't even help you with that one. Sweet. Now I'm stuck. Just take your time. Every day is just moving forward, forward. See, I don't like this, but I'm gonna find a way to make it everything it can be. And it means that we're gonna have a really full life when I get home. Maybe one more. One, two... Good. Get that hand under and you wanna push. One, two... All right? Not quite. Maybe one more. Good. Got you. Pull that one. Yes! Even from last week, this is just way better. Better strength. Effectively put socks on or trousers on, but it may take some time. (LAUGHS) It's not like knowing before. You actually need to feel it and it doesn't make sense to your head. Yeah. Cos there's no response from your body. Yup. So you actually have to` This is a whole` This is an intellectual journey more than anything. Tonight is my first overnight leave from the spinal unit and from the hospital since I've had my accident. Um, and that's hugely significant for me and Gemma as a family, because we haven't spent any time together alone since I hurt myself. So that comes with a whole lot of joy, but it also comes with a whole lot of sadness, because (EMOTIONALLY) last time I was with them, I wasn't broken. Need to keep it real. Like, we're allowed to be sad about this. But we also have to be happy that I'm making progress. Go on. Wait, wait, wait. No, no, no, no, no. OK, break's on. Yup. Wait. No, wait there! Lane will show you. Yup. Go! All right. OK. Oh, darling, it's OK. All right. Inside. This way. It might be` Are you all right? Foot off. Right. Ready. (GRUNTS) Cool. Oh, there's your sweetness. I think it was a real eye-opener in the reality of what our life's gonna be life when we go home. How skilled we'll have to be in order to manage this. Might get those. Might just have to` Get on it maybe. Yeah. That red` That red` I don't know how to do it. You will. All right. OK. Um, OK, now I'm gonna` you lean forward into me. I've got you. OK. OK? It's gonna come in really useful. Perfect. Yep. Can you do it? Is it too hard? I hate carpet. Ouchie. OK, Lols, you have to help me push cos the bed's quite low. Push. Once she's on the bed and we're all sat together watching telly, it'll be like normal. There won't be the barrier of a chair. There won't be that difference, and it's gonna be nice for me to be able to actually just... be able to touch and be there. Well done. You did it. One, two, three. OK. I'll even put the TV on. That's my fizzy drink over there. Cool. Hi, baby. That's your fizzy drink over there. And this is normal. This is normal. Gonna use this yellow banana board. Mm-hm. And we're going to assist you to transfer yourself across on to the plinth, and then back into your wheelchair, Cool. And this is working towards your goal to being more independent. Not more ` completely. Yup. Completely independent. Completely independent. Yes. (DETERMINED MUSIC) Two, three. That was all you that time. That wasn't us, so, yeah, we'll just stop there. That's the one. Two stages. Make it look easy, Amanda. (ALL LAUGH) Chur. Cool. Yay! Whoo-hoo! That's cool! That's really good! Thanks, love. (POIGNANT MUSIC) I need to own it. I need to say, 'This is how I look.' I need to start to become comfortable with this physical reality. It's not confronting, but it's quite odd, and I don't know quite how I feel about it yet. I think I still look like me, so that's the main bit. She'll tell you, 'If I'd died, you would have mourned for a bit, but you would have got on. 'Now you've got to live with me, like this. Is it enough?' It's not good enough for her. She's not happy with it. So she's gonna do everything to change that situation. As everyone says, if anyone is gonna get up and walk, it'll be her. Got four days left at the unit now, and there's this mixed emotion of wanting to get out in the world, but also being really afraid of what that means, because we're normal in here, and there's tons of us, and you've got a community, and there's a heap of support, so mixed emotions. You get not kicked out of here... Supposedly by about 1, and we don't know how to collapse the wheelchair. Still don't know how to collapse the wheelchair. OK. Collapse wheelchair. Have to remember that. What worries me is, is just I'm not sure who are the providers. I need to feel safe. Yeah. And I need it to go OK, and I need there to not be dramas, cos that's horrible. And it needs to work in with our family, because although these people are just caring for me, they also have to get on with us. They have to become kind of like part of our family because of the personal nature of what they are doing. The big thing that I'm sort of feeling is the fact that when we've come back before after weekends, there's been someone else to check you. There's been that backup if I've missed anything or... Now I'm like, 'Who else checks for bed sores? Is it all my responsibility?' It's just me, and that scares me a bit. I think that transition part, for me, feels frightening. I'm` I'm a little bit nervous about it. I'm excited, and I'm nervous. Where's my baby? Where's my baby? Is she hiding? (GIGGLES) I missed you so much! I need to have a cuddle. I missed you so much. What are we doing today, baby? Buying a home. And are you excited about that? I'm always excited. We're going back to a rental property while we decide what we're going to do with our house, and if it's worth modifying it or if we'll try and build or you know. There's a lot of` We won't be able to answer those questions until we have seen what it's like for me to be like this in our world. (UNCERTAIN MUSIC) Empty room now. It's weird. But it's good. Someone else can come now. I can go home. Much better idea. You go well. Yeah. I will, love. Lovely, lovely, lovely to meet you. You too. Yeah. ...lights on when I get old. Take care. You too, eh? Go well. See ya. Take care. Yeah. Give me all that. My darling. And you're a vital part of my time here. You know that, eh? Bye-bye. Bye. Go well. Mum! I'm hungry. You're hungry? You should have eaten some more cupcakes. I will never love this way of being. I will never accept it. I will never accept it. But what I will do is I will learn to be brilliant with it, and I'm going to grow with this, and I'm going to do everything I can to be really good with this. Arohanui, eh? (REFLECTIVE MUSIC) All right. Keep holding it. Keep holding it. Now we're good. Good, good, good. Cool. Come on, Lily. Yeah, I'll do it now. Don't touch. Thanks, man. I'm actually a mum, as opposed to just` No need to go kitesurfing. (BACKGROUND CHATTER) I think they get a better deal. My family get a better deal since I've been in a chair, cos I'm here. What did you do today? I went for a swim in the ocean, my baby. Lola is 7 years old. Ziggy ran away. (LAUGHS) Unfortunately she's heaps like me, and Gemma laughs all the time. She's says, 'It's like watching you argue with yourself.' So we're gonna have an interesting time. Can you do the, um`? Can you do a little song for me or are you a bit chicken? She always goes, 'I wish you had legs, Mum, and I just don't think you're trying hard enough.' And I'm like, 'Baby!' (SINGS WAIATA) I said I am trying. I'm trying real hard, but, um, it doesn't make a difference, you know? I said, 'We just have to be really good at what's going on right now.' I'm so proud. Oh my God. Can't wait to see it tomorrow, babe. Yay! That was good. Race. Let's go. Let's catch them, Zigs! (EXCITED SQUEALING) You all right? They're too speedy. They're too speedy. Aw, and a train's gonna come. Ziggy is 3. She climbs up on my knee and off we go. A digger. I know. I so wish I could get on it. She doesn't know any different. You know? It's cool. Yeah, yeah. Whoa! Sit on that. But she sees pictures of me in the past and goes, 'Is that you, Amanda? But you got no wheelchair.' And I'm like, 'I know.' There's two. This sand doesn't make sandcastles, though. You ready? Do you want me to try? It's good. Aw! What happened? I think it's tougher for partners. It's tougher for partners, and it's tougher for families than it is for the people who are injured. (LAUGHTER) Make the most of it, all right? It's challenged us a lot. To not become your partner's carer and stay as a partner is really challenging. But in terms of our relationship, we're working really hard to` to find a new way of being` being us. Put the lid on a shake it. The things you miss are the smallest bits. If I'm talking to her and I put my hand on her knee. And then I wouldn't respond, obviously, because I can't feel it. You forget that she can't feel it, which sounds dumb, but then she doesn't think you're being attentive. But we've figured out` Well, obviously, it's obvious, but she has to do things where I can see her do them. Thanks, babe, for making this work. Because I can't feel, I've still got to touch people, because me touching them still makes them feel seen and heard and loved. I think we're good, and we love each other. You know? And I'm really lucky. (EXHALES) I don't know how lucky she is, but actually I think she's pretty lucky. (LAUGHS) Can you do cheers? Cheers! (ALL CHEERS) Yay to our beautiful surroundings. I'm really grateful that I had the foundations in my old life that made this life OK. # Ooohh, # that old... I have quite a strong spiritual practice, I have a really strong physical life, and I've got really good support around me, so those three things, those three elements mean that this is gonna be OK. # Loud and clear. It's the resilience thing and the... and constantly trying to find joy and trying to find celebration and doing things you love. You know? # I let my guard down. # When you're walking... The tetraplegic bit is secondary to my life being good. My life is still really good. # They say you can't have too much # of a good thing. # Captions by Amenda Quang. Edited by Ingrid Lauder. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017