. LIVELY PIANO MUSIC Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 MUSIC BUILDS MUSIC QUIETENS POIGNANT PIANO MUSIC Rachelle McIntyre had everything she wanted ` a life on a farm, a job teaching and two children. I'm a country girl. Being a mum, of course, with that sort of maternal instinct that I had, that's what I always wanted to do. Diagnosed with multiple sclerosis a decade ago, her muscles have slowly wasted, and so has her dream of raising her family. She's 43 and living in a retirement village. INDISTINCT CONVERSATIONS Yeah, but it's not... where I wanted to be. It's not where a 43-year-old... who's got (GULPS)... (VOICE BREAKS) children... belong. And it's not how I want (SOBS SOFTLY)... them to (SNIFFLES)... remember growing up with their mother in an (SNIFFLES) aged-care facility. INDISTINCT CONVERSATIONS MEN CONVERSE ON TV I'll wake up, and you... lie there and wait for breakfast. You hear the trolleys when it's about 8 o'clock. Yeah, that'll be fine, thank you. Usually, I'm sort of cursing and saying, 'God, I'm sick of eating breakfast out of a bed.' It's very hard to lift up with your arm and when you're resting on this thing. TV PLAYS IN BACKGROUND That's my view that I see every morning. And, yeah, I've seen it for over a year now. I came here on the 1st of July... 2014. UNEASY NOTE You can sit in bed sometimes for what seems like half a day. How've you been? I'm good. How are you? I'm all right. D'you sleep well last night? I did. Not cold. No. Sometimes you are seen to at, sort of, about half past 9; other days, you can sit there until (TUTS) 11 o'clock, sort of thing, until, yeah, somebody comes to help you out of bed. UNEASY NOTE CLOCK TICKS Just gonna get that taken away. I was wondering when I might get up. I'm not sure, I'm the floater today, so... Are you a floater? ...not really on that. OK. I'll talk to the others. You know, I did say that I sort of have` You have to be up by 11 for physio, is it? No, I won't be going to that today. OK. But, um, yeah. I'm in a bit of a... I've gotta be out of here by about 1 o'clock. Rachelle was admitted to a rest home when she developed a dangerous pressure sore on her lower back. Her stay was only meant to last a few weeks, but she's now been here a year. The sores healed, but now she's separated from her husband and can't go home. POIGNANT MUSIC Glenwood Masonic Hospital is an aged-care facility. There are a few who have the startings of dementia, and it's just... not... not what I want them (SNIFFLES) to remember. And, yeah. (SNIFFLES) (TUTS) I've still got a lot of living to do. (TUTS) And my ultimate goal would be to, yeah, get a job and, um, be out there, living. UNEASY MUSIC No, to sip. Disability makes you face things. It makes you face your mortality. It makes you face the fact your body's changed. It makes you face the fact that you have to do things in a different way. I was diagnosed with MS in 2009, although I had symptoms of MS as far back as 1991. Life is as I make it. I mean, it wasn't easy, and I do get really bad days with really bad pain, where I just scream at the world and just wanna kick the cat, kick the dog and tell them all to go away. But life's OK overall, because every day is different. Get it. Get it. Good boy. Pull. Pull. Good boy. Good boy. OK? By the end of the day, if the pain's that great, I just take myself down and try and take time out for myself. It's not easy when you're busy. Like, working full-time is really really hard, because that work-life balance is really needed. But, you know, I'll get through it. It's only for a short time, so I know I can manage it for the next couple of years. But I do know that long-term, I'll probably have to adjust and try and find part-time work so that I can still have that work, still have that life and still have that balance. BIRD TWITTER Oh, is she? < Mm. Oh, OK. Cold outside, Rachelle. I know. Did you see the snow? Look after yourself. Yeah. And you look after yourself too. Multiple sclerosis attacks the nerve cells' protective coating, exposing them to damage. These attacks worsen with stress. Only two year ago, Rachelle used a walking frame. When she's feeling low, it's the thought of her boys that gets her through. They visit on Friday afternoons ` if it fits in with their sporting commitments. Mums were made to worry. I do. I'm a terrible worrier ` because I just miss them so much. Rachelle's finding it harder to be active in her boys' lives. Amalgamated Helicopters have offered to take them all for a ride. Well, this afternoon is... going to be... fantastic. I'm really excited. Um, when I talked to them last, they were trying to get it out of me of what we were going to do. I didn't give away anything. ENGINE RUMBLES SOLEMN MUSIC For Rachelle, it's hard for her to find activities she can do with two rambunctious, healthy boys. Fishing or, um, going out biking with them, any of those things, it's all different now. So what do you do with two teenagers when you've only got them for about an hour and a half? So the relationship must be getting strained, and that would be a huge concern, I'm sure. ROTORS WHIRR UPLIFTING MUSIC I grew up in Wairarapa. Always outside, and we had horses and cats, dogs. They grew up in the same country atmosphere. Now they live in each other's pockets. RELAXED MUSIC On a perfect day, what I would like to be doing with my children would be to be outside with them. And I would imagine that they would be wanting to ride their motorbikes, and I'd be on my horse. We'd just be together. As a mum myself, I know that she would want to be a part of their lives, would wanna know how they're doing, you know, want to be there when they've got needs. And yet these teenagers are having to deal with all the changes ` one, Mum's not coming back home; two, Dad's not with Mum any more; and three, Mum's condition is such that Mum may never be able to care for them fully. ROTORS WHIRR I've never been in a helicopter before. Quite amazing when you see the rivers, um, all tangling round. And, um, we did see a bit of snow. ROTOR WHIRRS How was it? Great. To be alive... (LAUGHS) ...and hope that I don't fall out. You haven't fully booked the` Whoa! I thought we might go backwards, actually. Oh. Because I'm gonna fall out. But I hope not. But... I think we might go backwards. (SPEAKS INDISTINCTLY) Who? Jackson's dad. Oh, Peter Jackson's. Oh, yeah. Of course he did. I think we're going over to ride up there, so we've gotta go backwards. OK, here we go. Yeah, just lift me. Yeah. The barriers for Rachelle are going to be` Well, she's in a rest home, so she'll be losing contact with her friends; she'll be losing contact with, uh, you know, family; she'll be losing contact with her community. And so one of the things that she needs is to get back out. She needs to get her independence and needs to be able to live her own life as she chooses to live it. GENTLE GUITAR MUSIC I mean, I'm happy reading a map and all that sort of stuff. That's a woman thing. We just` We just can't do those things. No, well, I'd have turned the map... Marie is Rachelle's closest friend. She's trying to help her get out of the rest home. Tell me, what's the plan for you, going forward? It's to get out of the aged-care facility that I am in. So you've got to set up, basically, a care plan for` Oh, yeah. ...an individual care plan. Just a` a timetable. What would be your biggest frustration about being in a` in a rest home? Oh, just not having any, um, independence. Great thing that has happened about you being in there is it's, you know, like` I mean, you've` you've actually got yourself in good health, which you weren't when you were living on the farm in that situation. So in some ways, it's been` there have been some advantages. Uh, yeah. Yeah. I know. Hard to accept` But` ...but, yes. Yeah. Yeah. And that's` I think it's helped give you the strength to want to` to actually step out on your own. Yeah. You know, when you first when in there, you weren't very well. And you've been able to eat well, and now you're strong enough to` Yeah, well, I had to be there. Yeah. Just because I wasn't able to stay at home. She's with me! She's with me! (LAUGHS) PENSIVE MUSIC Rachelle dreams of working again. But even getting out for the day is challenging. Rachelle relies on friends for transport. DREAMY GUITAR MUSIC Before her diagnosis, Rachelle taught at Opaki Primary. She hasn't found the courage to visit ` till now. Definitely I wanted to be a teacher right from` My sister and I used to play schools. We had (SPEAKS INDISTINCTLY) and things. And so it was sort of a given that I was going to be a schoolteacher. And it was something that I really wanted to do was to play a role in other people's lives and help them. Oh wow. This is new. This mural. How neat. GENTLE GUITAR MUSIC Wow. Ah, there she is! This is the woman I've been talking about. How are you? Good, thank you. Here's a walk down memory lane. Yeah. Heaven's above. Heaven's above. Oh. Hang on. LOUD SQUEAKING Thanks, Di. Thank you. Oh my goodness. Here we go. Look the same? Yeah, well, it does. Yeah. Hello! CHILD COUGHS The crew from Room Three, mostly. The crew from Room Three. Doing some algebra. Doing some algebra. Oh! Bet they're excited about that! This used to be my room. Oh, big changes. Rachelle was classic, cos we used to buy ` you girl` you guys will like this story ` used to buy new textbooks and whatever, and Rachelle always used to buy them all, and she used to do the sniff test. SOFT LAUGHTER She always has to smell new textbooks. LAUGHTER Yeah. I know. I'm a real book person. No, and the children in my class got the, um, (TUTS) got the bug also, because whenever we went to the library and there was a box of new books, they would say, 'Oh, Mrs McIntyre, look, there's a box of new books. Can we open them?' We would. We'd open the box, and we'd dive in and look at all these new books, and they would pick them up, and what would they do? CHILDREN: Sniff. Smell them. LAUGHTER My name is Rachelle, and I used to teach here at this school. I got diagnosed with... MS, which is multiple sclerosis, which affects the nerves in your body. How do you find ways to be happy? Well, I would go back to the mum thing. You just have to think of the boys. And that makes you happy. And think of memories, which sometimes` Well, most of them make you happy, but sometimes they can make you sad. Um, happy is also... to think of... what could possibly be in the future ` that they might find a cure for this disease, and that can bring you, um, happiness. It's amazing to be back here and of course amazing to be in the classroom and see children. Having` Being around children, I think that's what makes you (VOICE BREAKS) think back to your childhood. Yeah, and, um... (TUTS) Yeah, and not want to... to be like how I am now and especially not want to be where I am... now. PENSIVE MUSIC When a diagnosis happens of any kind, you go through depression; you go through anger; you go through doubt and denial; you go through, 'Why did it have to happen to me?' And then you eventually come to a point of acceptance. PENSIVE MUSIC CONTINUES Everyone goes through it, and I've gone through it, and, you know, every now and then, you go back through it as things change. It's just a reaction to shock. It's a reaction to change. And once you accept that that change is not gonna go away, once you accept that that change is there for good, then you go to the point of, um, being able to live your life. And it's really important, when people are first diagnosed with disability, to realise that there is a grieving stage and to be supported through that grieving stage so that when you have come to the acceptance, you start to realise that there's more to life than just your disability. You want five of those ones and then` Yeah, cos I don't know where I'll sort of be at 5` Yeah, I've packed your lunchtime meds... Yeah. ...and your afternoon meds. Rachelle needs inspiration. She's flying to Auckland to meet Huhana. What she's got it not something that needs to confine you to a rest home at 43 years of age. So I'm quite interested in meeting this woman, to be honest, and to find out what's making her tick; why is she in this situation and why is it she's not back home with her whanau. BOTH: Hello! (GIGGLES) How exciting! I know! Yay! Thelma and Louise. (LAUGHS) We're` Oh. We're on our great adventure. How wonderful. A road trip. Isn't that cool? (GIGGLES) So, what's the thing you want to do the most while you're up there? Um, well, Jesse told me that he wants a, um` a pack of cards from the casino. (LAUGHS) Looking really forward to, um, meeting the lady that we're having dinner with tonight. Mm. That'll be lovely, won't it? And, yeah` Really` Hopefully to get a lot of inspiration and` Yep. And, um, hopefully she'll... be able to, um... Plant some seeds. Plant some seeds, yeah, definitely. In that mind of yours. And, um, yeah, work towards just getting me out of that place. Marvellous. Oh, how fantastic. To be me again. Mm! ANTICIPATIVE MUSIC HIGH-PITCHED DRONING, MUSIC RESUMES I'll need your... (GIGGLES) Are you ready? Yup, I'm ready. It's gonna be fantastic. We're gonna have the best time ever. We are. I've never actually been to Auckland, apart from when you go to the airport to swap a flight, and I think I've only done that about once. BOTH CHATTER I did leave the country for a little while, because I went to Palmerston North Teachers College I went there for four years. Yeah, Palmerston North was a big enough city for me. ROLLING, FLOWING PIANO MUSIC MUSIC CONTINUES Whoa. This is... Here we are. I know! BOTH CHATTER ROLLING, FLOWING PIANO MUSIC Well, it's good to have you here. Yeah. It's lovely to meet you. I understand that you also have multiple sclerosis, or MS. How have you found it for yourself? Uh, pretty gutted. Yeah. Didn't know what the future was gonna hold? No. I didn't have the foggiest idea. And you were married at the time as well? Oh, yeah. Yeah. But you seem to be... And... ...OK about it now, or is it still a bit of a progression for you? Oh, well, uh, you've gotta be OK with it. It's life, isn't it? Because it's life. Yeah. I go through, um, the grief cycle... Yeah, every now and then. ...a lot. What do you actually do? A bit of everything, really. (LAUGHS) I'm a bit of a troublemaker. Um, no` Go for it! (LAUGHS) It's called having the advantage of having a mouth. It's, um` It wasn't until my disabilities came along, when I couldn't continue nursing, uh, that I ended up realising I had to look at another career. And I got myself into university. And I didn't think I'd achieve that. Nobody really thought I'd achieve very much. But I got A's, and I thought, 'Well, I must be able to do it. There must be something working up there.' And I went on and then did Law, and I got my Masters in Law with First Class Honours, and then I did my PhD. Rachelle, you're in rest-home care. How is that feeling for you at the moment? That must be very hard. Yeah. Very. One thing, um, that you might find that can help you is having network connections with other women who have got similar experiences or have had similar lives, and you can see where the potential is for each other rather than, you know, living your life in a rest home. And do you have any plans for yourself? I mean, you were a teacher. Yeah, I've got a lot of plans... that... What are they? To, yeah, get a` get a job, and with children. And that was where we came up with the idea to do the remote teaching, you know, for children that` Oh good! ...like correspondence teaching. Oh, that's right. Yeah. Because obviously, Rachelle's voice, you know, projection is not as strong as it was. So being in front of a classroom` Might be quite taxing. But if you were on Skype, you know, one on one... Uh, because of the resources ` you've gotta be able to get the resources together ` so you've really got to be down at the correspondence school in Wellington. They've got children there with disabilities, and so they need teachers that can understand their needs too. So I think it's really important that there be, uh, teachers with disabilities be a part of that process as much as children with disabilities having to be a part of that process too. I agree. So maybe there's a way that we can get past those barriers of having to get to Wellington. > There might be a way of getting support. Let's see what we can find out. Wow, you are... amazing. No, it's just` We've got to look for the solutions up here. If we give up, there's nothing. Yeah. There is nothing. And we can't give up. Eh? And I think that's the thing with` We are` We are a community. There's a big disability community out there. And I don't know if you do Facebook, but, uh... I do Facebook. You do Facebook? Well, we're gonna have to connect, because` Oh, I think so. ...I will put you on to the networks. Because I tell you what, they are people first. Disability, as society sees us, is something out there. We don't have to feel disabled every single day. And our community can help us to be strong, cos you can't do it alone. No. And I'd really encourage you not to do it alone. Because if you do it alone, you're gonna draw in. And you've got Marie. Absolutely. Yeah. I can see it means a lot for you. Yeah. It's OK. Don't you start me off. (LAUGHS) Then it's all go. Oh no! Ah. I'm sorry. And I think that was fortuitous. That friendship came right at the right time, eh? < Most definitely did. But you need to think about not trying to force this on your own. It will come. But you've got to find a network and a community that can help you feel it through the bad days so that you can find the good days. > EXPECTANT GUITAR MUSIC (LAUGHS) Here we go. Ooh! Oh wow. Awesome. I don't need to help you. I'm holding you. So that you don't, um, flake out. Look down. Look down there. Oh wow. That is wicked. (LAUGHS) Rachelle needs to realise that her life is not gonna be the same. She has to do things differently, and she will need to challenge some things in herself and in society in order to achieve those goals. She can do it. She has to have that confidence to step up and say, 'Well, this is what I want. This is what I'm gonna go for. This is what I'm going to achieve.' Huhana has tasked Rachelle to write down her goals. OK, Rachelle, let's talk about some of your long-term and medium-term goals. What is your long-term goal? My long-term goal is to get into my own home, hopefully by, yeah, my birthday. And that's by April 25? Sure is. So to be able to achieve this long-term goal, we need to set up some more intermediate goals. What do you think they need to be? First of all, I would have to sort out things with the` with Focus,... OK. in terms of what hours they would give me to have a caregiver come in so that, yeah, I'm sort of... living semi-independent. Yeah. Um, and so that's getting in contact with them. Um, also, like, the DHB. Cos everything's gotta go through them. So, Rachelle, what about that career goal we talked about last night? Uh, perhaps would it be that your, um, qualifications will need some sort of review or...? Well, they will. They do. Because, um,... at the moment, yeah, I need to... I... You only get, um... Uh, your teaching certificate only lasts two years. And when we come up against some of the barriers and the buffers that are going to make a little more of a challenge, you know, you've gotta come back to that 'why', because it's the 'why' that will always see you through. Yeah. Why should MS inhibit it` Exactly. ...when it doesn't have to? Let's do it. SERENE GUITAR MUSIC DREAMY GUITAR MUSIC So, this is where I work, up on the fourth floor. OK. And I'm doing a Postdoc research on, uh, the health and disability needs of experiences of Maori with disabilities. So, Rachelle, how have you come on with the challenges? (TUTS) Long-term goal is that I am going to be, yeah, living in my own home, and I'm hoping` Ka pai. ...hoping that it'll be before my birthday, in April,... OK. ...um, so that I can have a nice housewarming party. Awesome! Another long-term goal towards work? Is explore the avenues of being able to be a` a long-distance teacher, get it down pat. Well, that's fantastic. You've got a goal. You've got a couple of goals. And of course within those goals, I` I imagine that it'll be having your children` Yes. ...with you as well, and making sure that you've got that relationship building. You've gotta grab it. And it's really up to us, because society isn't gonna make it easy for us. < Society is not gonna allow us to grab it. We've got to take it and grab it, and it's really in our hands, completely in our hands. No one else can do it. Yeah. And so I really wanna encourage you that, you know, on the hard days, reach out. On the good days, just go for it as much as you can. On the days where you need to rest, allow yourself to rest. It's OK. And be good to yourself, you know? The one thing I learned a long time ago is that once you love yourself, you'll be fine. PLAYFUL GUITAR MUSIC Auckland ` we've been, and we've conquered, Marie. We did. We went and we conquered. That's the one. The future... can be bright, and I intend to, um, make mine be bright. Finn! Come! Aw! Good boy. So, what does Finn do for you? For me? Well, he can pull my socks off. He can pull my shoes off. He gets the mail. He calls for help, like, if I've fallen or something. Oh OK, right. Yep. Does all of that, and he also... He's a great companion to have. A special welcome to our dignitaries, our finalists, families and friends. The 2015 Attitude Awards are less than two weeks away. Tickets have now sold out, but this year, we're live-streaming the event, starting at 6pm on December 3rd. Get to know the finalists and have your say in our People's Choice Award on attitudelive.com. Copyright Able 2015