Captions by John Ling. Edited by June Yeow. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 I want... (MOUTHS) speech. Yeah. I want... speech. WOMAN: Yeah? > WOMAN: Yeah? > Yeah. Ju-Just everything back? > Ju-Just everything back? > Yeah, yeah, yeah! REFLECTIVE MUSIC In two thousand... and... thirteen, I... had a... brain... haemorrhage. I lost... my ability... to speak. I am... a doc...tor. I... was... about to... be... come... become a... haemato... lo...gist. REFLECTIVE MUSIC CONTINUES 1 This is Connor, 1 day old. MAN: Hello. > MAN: Hello. > Open your eyes for Daddy. one, two,... three. You have to walk down the Domain. Hi, Mum. > You have to walk down the Domain. Hi, Mum. > Hello. On your sling. You wanna say hello to Nana? Say, 'Hello, Nana.' Here we go. Oh, this is a nice page. You really like this one? This is what we ate on Saturday, isn't it? Walk. Walk over. Come on. Come on. Baby needs his mum. That's it. Legs as well. Other leg. < # Happy birthday to you. < # Happy birthday to you. Hello. Hello. Someone needs longer arms. Hello. Someone needs longer arms. There we go. And tilt down. Eh? Can you see Mummy and Connor and Daddy? It... happened... just after... Connor's 4th... birthday. SOMBRE MUSIC MUSIC CONTINUES WOMAN: What do you remember of when the haemorrhage happened? > WOMAN: What do you remember of when the haemorrhage happened? > SIGHS: Oh... Yeah. Yeah. Yes. Pain. Puh, puh, puh, puh, puh, puh... Yes. (SIGHS) Oh. Oh. Jo was at work, and I got a call from one of Jo's colleagues, uh, that she'd... something had happened, um, with her brain and to rush out to Middlemore. Got there an-and then, pretty much immediately, I was told that, um, it was a cerebral haemorrhage. They said there was about 50% chance that she'll even make it to surgery, so sort of prepare yourself for the worst. DREAMY MUSIC For the first three or four days, Jo barely had any consciousness. She was coming to very briefly i-in critical care. Between day four and day six, she started to get more conscious and more and more understanding of everything. It was clear she wasn't gonna be able to speak and that her right side was completely paralysed. I'd` I'd sort of managed to come to grips with those things and, sort of, in my head had traded them off for her life, um, and felt like they` those were the things that we could deal with, given the fact that she was alive. Say hi for the camera, JJ. > Say hi for the camera, JJ. > (MUMBLES) Ah... She knows exactly, in a certain part of her brain, what she wants to say. However, to be able to sort of, um, turn that into... into words, um, there are a couple of major blocks. The first one is apraxia or dyspraxia, which is basically the mind being able to control her mouth to make the sounds she wants to make. When she is stumbling over a word and trying to find that consonant sound, being able to do that at the right time just sort of evades her. She's also suffering from aphasia, which is a, sort of, jumbling up of signals as they come through what was the speech centre. It might be sort of like someone with dyslexia. The letters get twisted up, and she, sort of, can't put them into the right order. So frustration is the main thing, with that perfect thinking going on and absolute comprehension of what she wants to say but not able to do any output. WOMAN: What's it like? I-Is it like...? You've got the word on the tip of your tongue, > but you can't get it out? > but you can't get it out? > No. Is it like... you know the feeling, but you can't find the word? > Is it like... you know the feeling, but you can't find the word? > Yeah, yeah. You have to be so patient. > You have to be so patient. > Yeah, yeah. (SIGHS) Oh... (SIGHS) Oh... I... want... s-space.... Oh. Yeah. Yeah. You want space? > No. No. Speak? > No. Speak? > Yeah. So, do you still remember and know all you learnt about haematology? Uh, yes. yes. Uh, yes. yes. You know it all? > Uh, yes. yes. You know it all? > Yes, yes. Can you tell me about the years you've spent studying? > Can you tell me about the years you've spent studying? > Um... Uh... Three. Uh, no, uh... Six was... Yes... A goc` a doc...tor. Yes. Yes. Six years to become a doctor? > Yes. Six years to become a doctor? > Yes. Two years. Um... House surgeon? > House surgeon? > Yes. Five. Six, five and two? > Six, five and two? > Yes. 13 years? > 13 years? > Yes. Wow, and then one exam short... from becoming qualified? > Yeah. Yeah. Yeah. Yeah. Three exams? Yeah. Yeah. Three exams? No, uh, yeah. Two exams of becoming a qualified haematologist? > Two exams of becoming a qualified haematologist? > Yes. REFLECTIVE MUSIC LEON: She is such an amazing thinker and academic. The biggest worry of all is Jo's loss of identity. A lot of the identity is wrapped up in being a doctor. MUSIC CONTINUES I... love... Mama. Mm, yeah. We've been very proud of you because you always surprise me. We've been very proud of you because you always surprise me. BOTH CHUCKLE When you were 9 months old, you were diagnosed with a... a clicky hip. You're in a plaster cast for six months, and then when that plaster cast came off, you were about 18, 19 months old. You walked within three weeks, and the one thing that you showed then was a lot of tenacity and determination. And then you just went on wi-with school, and then when your brother got the academic prize and you turned to me and said, 'I'm as good as he is. I can do that.' And from that day onward, there was absolutely no stopping you. And then even when we took you to Baradene and the principal asked you what did you want to do, you said that you wanted to do medicine. She looked down at your school-cert marks, and she says, 'Oh, yeah, these marks are not good enough.' And, uh, you proved her wrong. You know, you beat the odds. That's what you do. You beat the odds. You've got` You've got strength. You've got tenacity. You've got determination. Um, an-and you will... you will do it. You will overcome it. POIGNANT MUSIC < Hey. You've got muck all over your face. < Hey. You've got muck all over your face. OK! This day being a year... a year on since the date, um, is... is a sort of strange day of, um, going back almost minute by minute and remembering what was happening at the time and remembering having a-a very normal morning and, um... and then` and then knowing that roughly the time that I had met` had the phone call and` and thinking about all those moments when` where was I at that point in time; what was happening at that point in time. I... let... died. Yeah. (CHUCKLES) Yeah, yeah. < You nearly died? < You nearly died? Yeah, mm. Oh, the wheels on the bus? Oh, the wheels on the bus? Yeah. I remember saying, uh, the dream was to have conversational English by the end of the first year, > and then in the second year, work on your academic language. > Oh! All right! Oh! All right! It hasn't quite... > Oh! All right! It hasn't quite... > Yeah. Further back, you think, than where we'd be? > Further back, you think, than where we'd be? > Yeah, yeah. Yeah. > Yeah. > Yeah. Physically as well, Jo,... Physically as well, Jo,... Yeah. Physically as well, Jo,... Yeah. ...what's, um...? How do you`? What's going with that at the moment? What are the limitations? Hands. Hands. Hands? OK, obviously. Obviously. Hands. Hands? OK, obviously. Obviously. Yeah, yeah. Yeah. You thought you'd be further along than that. What's that gonna stop you doing? Playing golf? Playing golf? No. (CHUCKLES) Playing golf? No. (CHUCKLES) You didn't play golf before, Jo. Stuff at home that you can't do or`? Stuff at home that you can't do or`? No, no. Work? Work? < Yeah. Yeah? Yeah? < Yeah. Like, doing procedures`? Like, doing procedures`? Yeah, yeah. Need a lot of strength to do a bone marrow and... Need a lot of strength to do a bone marrow and... Yeah, yeah. Yeah? Oh, well. Yeah? Oh, well. Yeah. Don't you look to get out of those at every opportunity, anyway? No. No. Oh. No. Oh. (LAUGHS) A kiss for Daddy? No? OK, all right. 'Jo and I were always really good communicators. It's one of our strengths. 'We always talked a huge amount. 'And I know her really really well, and I usually know what she's roughly thinking about, 'which means I can usually tease out the point.' < All right there, Jo? < All right there, Jo? Uh, no. OK, sweetie. Lie down. OK, sweetie. Lie down. < (CRIES) OK, sweetie. Lie down. < (CRIES) Lie down. Lie down. Shh... How do you feel when`? When I've got to step in and do the communication for you? Feels like it's been the longest time, huh? Longest. Longest. Yeah. WOMAN: Two? > WOMAN: Two? > Yeah. WOMAN: Two? > Yeah. Are you saying, 'I don't like it?' No. No. No. Is that the word 'like'? No. No. Is that the word 'like'? Yeah. You saying`? Are you trying to say, 'What it's like'? You saying`? Are you trying to say, 'What it's like'? No. Oh, yo-you hope to be not needing me by two years? Oh, yo-you hope to be not needing me by two years? Yeah, yeah, yeah. That's the goal? That's the goal? Yeah. Yeah, we always had two years in mind for you to be able to... speak relatively comfortably in conversation and stuff, eh? speak relatively comfortably in conversation and stuff, eh? Yeah. Go... Go... Good. > Go... Good. > to... sleep... now,... Connor. Connor. Tongue up. Connor. Tongue up. BOTH: To... sleep... now,... Connor. Connor. Yes, good. Good. I understand... everything you say. Eve...ry...thing. Yes. You try it on your own. At your... Ev... (YAWNS) (YAWNS) Give you a yawn. Yeah. I understand... eve...ry...thing... ...you say. ...you say. Starting from 'ry'. ...you say. Starting from 'ry'. BOTH: Ry... Great. Great. BOTH: Eve...ry...thing. Great. BOTH: Eve...ry...thing. Yeah. What's understated is that effort that goes into communication and, um, for Jo, even when she needs to try and articulate any sounds or words, that needs conscious thought of where she's gonna position her lips, tongue to be able to produce those words. I mean, that's from my opinion. I think it requires concentration and effort, and that's what then results in the fatigue. REFLECTIVE MUSIC WOMAN: Compared to... studying haematology, which I imagine is pretty difficult, how hard is what you're going through now? how hard is what you're going through now? No. Much harder? Much harder? Yeah. MUSIC CONTINUES 1 CHILDREN CHATTER Hey. Hey. How you doing? You good? He's outside, building sandcastles. (GASPS) Hey. (GASPS) Hey. I did this. (GASPS) Hey. I did this. Oh, ooh, ooh. LEON: We have to be quite careful of not comparing Jo and Connor, because there's a difference between someone acquiring language for the first time and someone like Jo, who has that` the issue of having the word there in her mind but not being able to make her mouth... physically make her mouth say it. He's not frustrated as much now. He's not ripping books out of her hand when she tries to read them to him any more. But, yeah, I really want him to make sure` wanna make sure that he knows how-how smart, how intelligent, how` how` that his mum was a doctor. We often talk about that, um, as doctor. Yeah? (CHUCKLES) Oh, this one. Oh... WOMAN: How can you relate to his learning? Oh... Connor... (SNIFFLES) Connor... want... to... (SIGHS) (SIGHS) learn? > (SIGHS) learn? > Yeah. TEARFULLY: I... You wanna tell him things? You wanna tell him things? Yeah. Look. You say quack, quack to them. Quack, quack! 'You hear of scenarios where someone has a traumatic life event 'and the people around them can't cope and walk away. 'I don't understand that at all. How can it be too hard to care for someone 'that you've decided to spend your life with?' Where you going? > Jo's always been... just... just one of the strongest people I know and... (SNIFFLES) one of the most... Oh, just... (VOICE BREAKS) I-I love her for being a powerful woman, and that's one of the reasons I fell in love with her,... (SNIFFLES) and this takes... take so much of that away. REFLECTIVE MUSIC In the early days, I barely slept, and even now I still have nightmares around certain elements of it. Coping is a strange thing. I think you don't know how you're going to react until you're in the situation. I still run through scenarios about Jo dying because, I guess, the processing of what might happen in those early days has almost burnt itself into my consciousness. REFLECTIVE MUSIC ENDS Connor, do you want some cornflakes? Connor, do you want some cornflakes? Yes, Connor? Or Weet-Bix? Or Weet-Bix? Uh, corn... flakes? Yes? Um... Uh, ah, Weet-... Bix? Yeah? Yeah? < Would like a... < morning hard. No, no, a... hard. < WOMAN: Time to do your hair? < WOMAN: Time to do your hair? No, no. < WOMAN: Time to do your hair? No, no. < (CHUCKLES) Um... Um... < No? Your head? No? It's hard since your AVM? > It's hard since your AVM? > No. It's... back. back. You never liked mornings? > back. You never liked mornings? > Yeah, yeah. Well, most mornings involve me nagging you, don't they, to... to hurry up? Pretty typical. Wanting to make sure I get out the door fast enough to get to work. For the first six months after Jo's cerebral haemorrhage, I wasn't working cos I was still on a year's paternity leave, looking after Connor. I guess we never imagined that I would be the one going to work and Jo would be the one at home, um, looking after Connor a bit an-and doing all of her classes the rest of the time, cos the plan was always for Jo to be working and for me... me to be the one, um, doing the primary, kind of, childcare stuff. Yeah, it's a little bit, um, different from how we pictured it. Jo's career has always been the dominant, most important career in the` in our family. So that kind of had to shift out a little bit for a while, and hopefully, that, um, comes back. Here we go, getting in the car. Where are we going, Connor? Day care! > Day care! > Day care! > In the mornings, I usually take Jo and Connor up to day care, and then I head off to work. I just like to spend time with Connor and supervise, which was a big issue when, early on, when she was starting to get epilepsy, and we didn't know how controlled it was. Oh, Connor. What's that? Oh, Connor. What's that? Look. Oh, Connor. What's that? Look. What's that? Connor, look. Connor, look. What's that, Connor? A rubbish truck. > All right. Bye. (GRUNTS) So, I'm on my way to work at St Cuthbert's college. So a lot of the things that I've learned from dealing with Jo have actually helped me in my teaching. Early on, I was just quite fascinated by the way her mind had lost language. Not just, um, words, um, spoken word, but writing and sort of symbolic language as well, an-and, um, also just seeing how... you know, it doesn't matter how hard someone wants to do something when they've got conditions in their brain, whether it be what Jo's got or dyslexia or something like that. You just` You just hit walls. Only, sort of, hard work and understanding and workarounds can kind of` kind of help with it. (LOCKS CAR) Power. Yes. Um,... parlour. Um, paula. (CHUCKLES) WOMAN: Power? > WOMAN: Power? > Yeah. Um... With, um... With language comes power? > With, um... With language comes power? > Yes, yes, yes. REFLECTIVE MUSIC MUSIC CONTINUES Um, whole. Half. Whole and half? > Whole and half? > Yeah. Whole and half? > Yeah. Yeah. Of your`? Of yourself? > Yes, half. Yes, half. You're halfway? Yes, half. You're halfway? Yeah. LEON: People ask me, 'What progress is she making?' She's making progress. There's always forward progress. However, the progress that we can see has not yet been significant enough to have a positive impact on what she's able to do. Her very very clear goal is to get back to her job. I'm quite confident she'll get back language to a really good conversational level, but that extra academic stuff that she's gonna need t-to be a haematologist, I-I fear might elude her. Wh-When these trials and tests come along, you` so you... you find out who you are, and you just either got to... roll over and give up or you` or you fight. She's certainly fighting, and... and I try to support her as much as possible and be the... I'm still trying to be the... the man behind the amazing woman that I wanted to be before that I was when she was in a medical career as well. I want to... go back to work. Jo's been avoiding going to the hospital. I-I guess it's hard sometimes to think about work. Uh, at the same time, she desperately wants to get back there. I met Jo when she was a haematology registrar in this hospital. She was a trainee. So a junior doctor; not yet a consultant. And she chose to spend six months working with my team, which is the hospital palliative-care team. She is courageous to come back into a environment where your colleagues are all doing what you were doing before. I can't imagine what it might feel like coming back in, knowing that this was what` where she would be. She'd be a consultant by now. BOTH CHUCKLE Oh... Oh... Yes. Yes. Yes. How you doing? You all right coming in? It's big, isn't it? Yes. Yes. Yes. Yes. Show me the way. Yes. Yes. Show me the way. BOTH GIGGLE You are a different person by the time you've become a doctor and worked in medicine for a while. You see yourself differently. It's probably not until it's taken away from you that you really begin to realise it. It's big coming back here, isn't it, Jo? It's big coming back here, isn't it, Jo? Yeah, yes. How does it feel walking back into this place? How does it feel walking back into this place? Uh,... hard. hard. Hard? hard. Hard? Yes. Um... Um... Which was your desk? Yes. Yes. This one? Yes. This one? Yeah. Have you been back in this room? Have you been back in this room? No. Have you been back in this room? No. Since it happened? This your rubbish on the wall? This your rubbish on the wall? Yeah. This your rubbish on the wall? Yeah. BOTH CHUCKLE No. Uh, yes. < That's yours? < That's yours? Yes. Oh yes. < That's yours? < That's yours? Yes. Oh yes. < That's yours? Yes. Oh yes. BOTH CHUCKLE Yeah, yeah. Yeah, yeah. Is this where you wanna be back? You're not sure? You're not sure? No. You're not sure? No. You're not sure? Uh, yes, yes. Um,... yes. yes. You think it's gonna be possible, with everything that...? Uh... Uh... Don't know? Uh... Don't know? Yes, yes. Yeah? Yeah? Yeah. You're still hopeful? You're still hopeful? Yeah, yes. Yeah. Yeah. Yeah. I want to... speak. I don't... Um... Do... (SIGHS, CHUCKLES) It's all right. OK, you want to speak well enough? Well enough to be able to come back to work? Mm-hm, yeah. But it feels OK? Being in here? The thought of coming back here feels OK? Yeah, yes. But you'd need to be able to speak well enough. But you'd need to be able to speak well enough. Yes, yeah. WOMAN: What is it about work that you love so much? > WOMAN: What is it about work that you love so much? > Um... Um... (SIGHS) I... love you` love it. Yes. Yes. You love it? > Yes. You love it? > Yeah. Why? > Why? > Um... Um... Purple. Purple. Purpose? > Purple. Purpose? > Uh, yes, um... Pu-pu. Pu-pu. People? > Pu-pu. People? > Yes. You love the people? You love the people? Yeah. Your colleagues and the people you help? > Your colleagues and the people you help? > Yeah, yeah. HOPEFUL MUSIC Too high. Don't slip. Don't slip. Yeah! Yay! Getting back to work's gonna be a really really hard thing for Jo. Even if she does, it won't be the same. She's not gonna get back to... to the really high-powered, high-energy 14-hour day kind of thing that she used to do and love. We've come a little bit further along towards acceptance. She said something about five years the other day to me, which is a new` a new number. At least she's now realistic it's not gonna happen in a year and a half, two years, but she's not giving up, so it's pretty amazing. WOMAN: How do you thing you've changed since the... haemorrhage? > Uh... Uh, Connor is... Leon and... so precious to me. Connor and Leon are...? > Connor and Leon are...? > Are s... portant... s... (SIGHS) So important to you? > So important to you? > Yes, yes, yes. Nominations for the eighth annual attitude awards are now open. For information and entry forms, go to... It's great to be in an audience where people are talking about ability and not disability. Captions were made possible with funding from NZ On Air. Copyright Able 2015