1 (UPBEAT PIANO MUSIC) Captions by Madison Batten. Edited by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017 FEMALE VOICE: My name is Jo. In my head, this is kind of how I sound. I think clearly. I remember all of my medical studies. The voice in my head speaks like anyone else. But this is not my voice. It's a narrator's. Four years ago, my life changed forever. An arteriovenous malformation in my brain burst. What do you remember of when the haemorrhage happened? Oh. Yeah. Yeah. Yes. SOFTLY: Speak. SOFTLY: Puh-puh-puh-puh-puh. Yes. Oh. Oh. Jo was at work, and I got a call from one of Jo's colleagues, um, that she'd` something had happened with her brain and to rush out to Middlemore. Got there, and pretty much immediately I was told that, um, it was a cerebral haemorrhage. At that stage, they said there's about a 50% chance that she'll even make it to surgery, so, sort of, prepare yourself for the worst. (SOFT PIANO MUSIC) For the first three or four days, Jo barely had any consciousness. She was coming to very briefly in critical care. Between day four and day six, she started to get more and more conscious and more and more understanding of everything. Um, and it was pretty clear that she wasn't gonna be able to speak and that her right side was completely paralysed. 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 those were things we could deal with, given the fact that she was alive. Say hi for the camera, Jojo. Ahh. 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. So when you see her stumbling over a word and trying to find that consonant sound, being able to do that at the right times just, sort of, evades her. The other thing that happens is she's suffering from aphasia, which is a sort of jumbling up of the signals as they come through what was the speech centre. It might be sort of like someone with dyslexia, where the letters get twisted up, and she then, 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. What's it like? Is it like you've got the word on the tip of your tongue, but you can't get it out? No. Is it like you know the feeling, but you can't find the word? Yeah. Yeah. You have to be so patient. Yeah. Yeah. (SIGHS) Oh. (SIGHS) Oh. I want space. Uh... Yeah. You want space? No. Speak? Yeah. So, do you still remember and know all you learned about haematology? Yes. Yes. You know it all? Yes. Yes. Can you tell me about the years you've spent studying? Um... Uh, three` Oh. Uh, six was... Yes. Uh, doc-tor. Yes. Six years to become a doctor? Yes. Two years, um... House surgeon? Yes. Five. Six, five and two? Yes. 13 years. Yes. (GENTLE PIANO MUSIC) 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. (WOMAN LAUGHS) I love... Mama. Yeah. We've always been very proud of you because you always surprise me. (BOTH CHUCKLE) When you were 9 months old, you were diagnosed with a clicky hip, and you were in a plaster cast for six months. And then when the 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. You beat the odds. That's what you do. You beat the odds. You've got strength. You've got tenacity. You've got determination. Um, and you will` you will do it. You will overcome it. (TENDER PIANO MUSIC) Hey. You've got muffin all over your face. (BABBLES) Oh, the wheels on the bus. Yeah. I remember saying what 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. Yeah. Yeah. Hasn't quite` Further back, you think, than you thought we'd be. Yeah. Yeah. Yeah. Physically, as well, Jo? Yeah? What's, um` How do you` What's going on with that at the moment? What do you th` What are the limitations? Hands. Hands? Yeah. You thought you'd be further along with that? Yeah. What's that gonna stop you doing? Playing golf? No! (LAUGHS) You couldn't play golf before, Jo. Stuff at home that you can't do, or`? No, no. Work? Yeah. Yeah. Yeah. Like doing procedures? Yeah, yeah. You need a lot of strength to do a bone marrow and... Yeah. Yeah. Oh well. Yeah. Don't you, like, look for an excuse to get out of those at every opportunity anyway? No. Oh. (LAUGHS) Kiss for Daddy? No? OK. All right. Jo and I were always really good communicators. That was one of the strengths of our relationship. 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. (INDISTINCT CONVERSATION) OK, sweetie, lie down. (CONNOR CRIES) Lie down, Connor. Shh. How do you feel when I've got to step in and do the communication for you? Yeah. Feels like it's been the longest time? No, no, no. 'Longest'? Yeah. Two? Yeah. Are you saying, 'I don't like it'? No. No. Is that the word 'like'? Yeah. Are you saying` Are you trying to say what it's like? No. Oh, you hope to be not needing me by two years. Yeah. Yeah. Yeah. 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? Yeah. Go... Good. ...to sleep now,... Connor. Tongue up. BOTH: To sleep now, Connor. Yes. Good. Good. I understand... (INDISTINCT) to say. Eve-ry-thing. Yes. Can you try it on your own? Ev-you. Ev. (YAWNS) What's understated sometimes is that effort that goes into communication. And, um, for Jo, even when she needs to try and articulate any sounds or words, that requires a conscious effort to think of where she's gonna position her lips and tongue to be able to produce those words. So everything's` I mean, that's from my opinion. I think it requires concentration and effort, and that's what then results in the fatigue. (SOFT MUSIC) Compared to studying haematology, which I imagine is pretty difficult, how hard is what you're going through now? Hm, no. Much harder? Yeah. (SOFT MUSIC CONTINUES) (PEOPLE CHATTER) How are you, Jo? Hey. Good? Yeah. He's outside building sandcastles. (GASPS) Hey! There he is! Ooh. We have to be quite careful of not comparing Jo and Connor, because I think there's a massive difference between someone who's 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. Here? (CHUCKLES) Ooh. How can you relate to his learning? Oh. Connor... Connor... want to (SIGHS) Learn? Yeah. I... You wanna tell him things? Yeah. (CRIES) Jo's always been just... just one of the strongest people I know and one of the most` I love her for being a powerful woman, and that's one of the reasons I fell in love with her. And this takes... takes so much of that away. (SOFT PIANO MUSIC) Connor, do you want some cornflakes? Yes? Connor? Or Weet-Bix? Corn-flakes? Yes. Um... or Weet-Bix? Yes? Yeah? Would like a... (SPEAKS INDISTINCTLY) No, no. Uh,... hard. Time to do your hair? No, no. (CHUCKLES) Um... No. It's hard since your AVM? No. Back. You never liked mornings. Yeah. Yes. Most mornings involve me nagging you, don't they, 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 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. I mean, Jo's career's always been the dominant, most important career in the` in our family. So that kinda had to shift out a little bit for a while. And hopefully that comes back. No? OK. All right. So, I'm on my way to work at St Cuthbert's College. A lot of the things that I've learned from dealing with Jo have actually helped me in some of my teaching. Yeah. You have a good day. Bye. Earlier 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. And` 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. Parlour. Paula. Oh. (CHUCKLES SOFTLY) Power? Yes. Yeah. With, um` With language comes power? Yes, yes, yes. Stand nice and straight and take your arms out to the side. People ask me all the time what progress is she making, and I say she's constantly making progress. There's always forward progress. However, the progress that we can` 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's she's gonna need to` to be a haematologist, I fear, might elude her. When these trials and tests come along, you say you find out who you are, and you've just either gotta roll over and give up, or you fight. She's certainly fighting, and I'm trying to support her as much as possible and be the` I'm still trying to be the` the man behind an amazing woman that I wanted to be before, that I was when she was in her medical career as well. I want to go back to work. Jo's been avoiding going to the hospital. I guess it's hard sometimes to think about work. At the same time, she desperately wants to get back there. I met Jo when she was working as 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's incredibly courageous to come back into an environment where your colleagues are all doing what they were doing before and what you were doing. I mean, I can only begin to imagine what it might feel like coming back in, knowing that this was where she would be ` she'd be a consultant by know. Lovely to see you. Aww. Yes. How you doing? Yes. Fine. You all right coming in? Yeah. It's big, isn't it? Yes. '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? Yeah. Yes. How does it feel walking back into this place? Uh, hard. Hard. Yes. Um... Which was your desk? Yes. This one. Have you been back in this room since it happened? No. This your rubbish on the wall? (BOTH LAUGH) No. Oh, yes. That's yours. Yes. Oh yes. That's yours. Yes. Oh yeah! (LAUGHS) Yeah. Is this where you wanna be back? (EXHALES) You're not sure. No. You're not sure. Uh... Yes. Yes. Um, yes. Do you think it's gonna be possible with everything that`? Uh... Don't know? Yes. Yes. Yeah. Yeah. You still hopeful? Yeah. Yes. Yeah. Yeah. I want to... speak at (SPEAKS INDISTINCTLY). Um. T... Ugh. (CHUCKLES) It's all right. Keep going. You want to speak well enough? Yeah. Well enough to be able to come back to work. Mm-hm. Yeah. But it feels OK... Yes. ...being in here? The thought of coming back here feels OK? Yeah. Yes. But you'd need to be able to speak well enough? Yes. Yeah. Yeah. Yeah. What is it about work that you love so much? Um... Um... (SIGHS) I love you` love it, yes. You love it. Yeah. Why? Um... Um... (SPEAKS INDISTINCTLY) Purpose? Yeah. Um... People. People? Yes. You love the people. Yeah. (UPLIFTING GUITAR MUSIC) This is Connor 1 day old. Hello. Got your eyes open. Legs as well. Other leg. Good boy. There we go. Who's that? (CHUCKLES) Hi, Connor. # Happy birthday to you. # Happy birthday to you. # Hey. Can you see Mummy and Connor and Daddy? It's your birthday. (TENDER MUSIC) All right, sit up. Yup. Further back. Oh, yeah, I know what to do! 'I guess it's about three and a half years, nearly, now since Jo had her cerebral haemorrhage. 'And it hasn't been an easy time, but I guess we're constantly making forward progress.' Come on. We gotta go soon. I can see the change. I can see the movement, but I` The word I'd describe it with is glacial. Since we last saw you, what's improved? Um, driving. Driving? Yup. And what's that like ` being able to drive again? Yes. I like it. Yeah? Yeah, yeah. Where do you go? Uh, um... Everywhere? Yeah. No, not tickles! I don't like getting tickled. (CHUCKLES) All right. Off to day-care, Connor. 'Yeah, Jo's got a much greater vocabulary than she would have had a couple of years ago. 'It's` It's probably easier for her to access words now. 'Though, sometimes and some days and some moments, there are still those huge frustrations 'about not being able to find the right, um` right starting letter, or` 'She was having a lot of trouble with December the other day.' (CONNOR CHATTERS) ...Sky Tower. Park, um... South Pole? No, no. Um, (SPEAKS INDISTINCTLY). (GENTLE PIANO MUSIC) Window down, Connor. (KISSES) I love you. Bye. (GENTLE MUSIC CONTINUES) Yeah, what's it like being back for you? Yeah. Yes. Um... Um... Do you love it? Yes. Yes. What Jo's doing is reporting on blood films and bone marrows. She's looking down a microscope and writing a report on what she sees, which can give useful information to clinicians about what's happening. What an amazing achievement when people thought that it would be impossible for Jo to really get back to any kind of level of functioning. And given how incredibly determined she was to do that, when everyone thought it was completely impossible, she's really done an incredible job to get this far. Jo being back at work, I guess, from a financial perspective, has been amazing. We've been running it right to the bone for a long, long time. She can do a little bit more with Connor. Don't have to worry about taking him to a movie or getting takeaways once a month or something like that any more, which we could never really do before. (CONNOR CHATTERS) Yeah, yeah. The hardest part with Connor was probably that Jo wasn't able to spend as much time with him as she would have wanted to. When she first had the cerebral haemorrhage, obviously, she was in hospital and rehab for a space of around three months, followed by time at home where she was just bedridden. Things that made the most difference to that were her getting stronger physically, and not having to sleep as much was a big deal. And then from about a year and a half ago, she started looking after him one day a week. Then it went up to two days a week. And that time has allowed them to bond without me around. Hey. Connor. No, no. Uh, Mummy says no. Hat on. Yes? What are you most happy about at the moment? Luke Skywalker met Yoda. Yes. There's been a couple of things about Jo that just have never wavered and definitely haven't changed ` determination, coupled with the love of the job that she was doing, and she's` she's fearless in certain environments. Y'know, I still am in awe of` I say to her, 'Do you really wanna go out and try that on your own 'without someone, you know, there with you?' I imagine if I was that person and couldn't articulate it, I would be hiding under my rock somewhere. But she's just out there and doing it. (READS INDISTINCTLY) Ooh, I know that guy. Yes? Yoda. Yes! Yes. How do you think you've changed since the haemorrhage? Oh. Uh, Connor and Leon (SPEAKS INDISTINCTLY) to me. Connor and Leon...? are s` port` (SIGHS) So important to you? Yes. Yes. Yeah. Whoo-hoo! (LAUGHS) (LAUGHS) Captions by Madison Batten. Edited by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017