Hand cycling through Spina Bifida (Being Me: Jono)

* (GENTLE MUSIC) – I’m Jono Nelson. I’m 36 years old. I was born with spina bifida, and I compete in Para-cycling in the H4 category. I love handcycling. I just love the sense of speed, the wind in my face — especially when I hit speeds of 80 K’s an hour. It’s amazing. (GENTLE MUSIC CONTINUES) At the moment, I’m training for the K2 cycle challenge. No other handcyclist in New Zealand, or the world, has ever attempted this. It’s over 200km, it’s got 2500m of elevation, and I’m gonna give it a damn good crack. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2021 (UPLIFTING MUSIC) The weather condition — absolutely appalling.

It’s windy. It’s raining. The only good thing about today is it’s not cold. The wind is just a pain, especially if it’s a crosswind. And I think today we’re gonna have some crosswind. I think it’ll go OK. It’s more of a mental test rather than a physical test. I’m looking forward to it, but a little bit worried. I’m just telling myself just to keep those pedals turning. – MAN: All right, John? – I’m not falling out, put it that way. The only time they’re going to pull me off is if I’m in complete dire straits. Love you. See you on the course. – Love you too. (CHEERING, APPLAUSE) – Drive safe. – ‘You have to be a little bit cuckoo to do something like this, ‘but if you wrap yourself up in cotton wool, you ain’t gonna do anything, are ya?’ (ROUSING GUITAR MUSIC) So, how I actually explain spina bifida — it’s basically getting, like, a piece of string and cutting it in half.

One half of me works; one half of me doesn’t. Nicky, where are you? Food time! Come on! ‘With spina bifida, you’re born with a hole in your spine, ‘and depending on where that hole is, is where you’re paralysed from. ‘My hole was at the bottom of my spine, so I’m paralysed from the waist down. ‘I basically have no feeling in my legs from the knees down. ‘I can walk on crutches for a short distance, ‘but 80% of the time, I rely on my wheelchair to get around, because it’s a lot easier and faster.’ So, every morning I have to clean my G-tube. This goes into my large intestine and basically helps me go to the toilet. I’m L3-L4, so that basically means that I’ve got limiting bowel and bladder function. This helps me with my bowel cares. And then for my bladder cares, I just do four-hourly intermittent catheters, which is pretty standard for people with spina bifida. (EASY-GOING GUITAR MUSIC) (VELCRO RIPS) If I use my crutches, I wear these so my legs have support, cos I’ve got no muscles around my ankles, so just basically keeps my legs in place. Eh! – SHARON: ‘Jono is a outgoing…’ – Oi! – ‘…very caring man.’ He’ll put other people first 90% of the time. But then career-wise and sporting-wise, he’s dedicated to the task. – ‘Me and Sharon are a great team. She can recognise if I’m having a bad day, and she goes, ‘What’s up?’ ‘And the same goes for her, you know?

We support each other.’ Unfortunately, me and Sharon are unable to have kids of our own, so Nicky here gets treated like our daughter. Anything she wants, she gets. – She’s definitely Daddy’s little girl. – Mm. (GENTLE MUSIC) – ‘When he is training, and if he’s away a lot, we don’t get to spend a lot of time together with work.’ – Because she works in hospitality, and I do the job I do, sometimes we’re like ships in the night. I’m basically finishing work and she’s starting work. But when we do get to spend time together, we like to go out for coffee, we like to go play disc golf, and we have lots of fun together. (UPLIFTING GUITAR MUSIC) (SEABIRDS SQUAWK) We were both on NZDating. I tried the first time to get her, and she wouldn’t have a bar of it. She thought the age gap was too high. Down here. – Down there? – ‘Me being persistent, I tried a month or so later, ‘and she thought, “Well, no, I’ll give this guy a chance.”

‘We met one night after she finished work.’ – (CHUCKLES) – Look, no hands. – ‘We just clicked. It was just like talking to your best mate. We just carried on from there.’ – Is this where you got your hole-in-one? – No, I got it over the other side. – They kept it secret from us for a bit. And, yeah, they got together with each other, which is lovely because we always thought we were going to have Jonathan living at home (CHUCKLES) for the rest of our lives. (CHAINS RATTLE) – Six months after meeting her, we were engaged. No, I’ve thrown further than you. – Oh yeah. – ‘And then we were married a year later.’ That’s the rules. – (CHUCKLES) – There was no messing around. I didn’t want to lose her. (CHUCKLES) It was love at first sight. – ‘We’re a bit like opposites attract, cos I am quite shy.’ – How many’s that? – Three. –

Three. Right-o. – ‘He is the guy that’s always the talk of the town, in the limelight and stuff, ‘so he helps me through those things. And it’s just nice to know that he’s got my back.’ Miss, miss, miss, miss, miss. (CHAIN RATTLES) – Yes! – Aw. (CHUCKLES) – ‘She’s the best thing for him.’ – Five for me. – ‘He became more independent. God, we used to have to go around quite regularly and help clean up.’ But now that he’s got Shaz, he has to take his turn doing the housework and bits and pieces. – Winner does dishes tonight? – Yep, right-o. Fair enough. – Fair enough. And cooks? – No. – (SCOFFS) Wuss. ‘He’s an independent guy. He doesn’t need people doing his stuff for him. ‘I won’t help him put his wheelchair in the car ‘because I’ll get told in no uncertain terms that, “I don’t need your help.”‘ He will let me know when he needs my help, and I’m there to help. – I win. Guess you’re doing the dishes. – (LAUGHS) ‘Jono did the K1. ‘I must admit, I wasn’t very happy about him doing it, ‘but he did it, and then he comes back and goes, “The organiser wants me to do the K2.” ‘I still have my worries about it. ‘But, hey, I’m not going to be the one that stops him doing it. ‘If he wants to do it, I’ll just be the nervous one in the background. (CHUCKLES)’ So, do you think you’re ready for the race? – Yeah, ready as I’ll ever be. I’ve done the work, and I’ve done the training. – There’s a lot of blind corners. And the locals, they fly around those corners cos they know it so well, and they’re just not gonna expect to find a handcyclist there. It still worries me. I think once I get there, it’ll be all right. John, his coach, has got a lot of things in place for safety and that. And I’ll be following behind in the car as well so I can keep an eye on him. – How do you feel about me going down some of these hills? – I won’t lie and say that I’m not worried about you, but I know that you know your limits. You’re not gonna be a hero. – Mm. – You’ve done the hard work. You’ve done… – Yeah. – …the psychological work of… – Yeah. – …thinking that you can actually do it when no one else has. – Yes. Yes. – Now, you’ve just gotta put it all together. – Do it. Yes. Which I will. – And I’ll be at the finish line waiting for ya. (BOTH CHUCKLE) * (CICADAS CHIRP, BIRDS SING) – I need to be back by the Wednesday. – Yeah. The road race is here, and probably going up on the Thursday. – K, so leave Tiff’s. – ‘Me and Sharon are a great team when it comes to my sport.’ I’ll just have to be thrifty with my clothes. ‘Sharon takes care of everything. She writes out all my timetables. ‘It’s really important that everything’s on a tight schedule. ‘Without her help, you know, I wouldn’t be as calm as what I am.’ – No, change flights. ‘Basically, I do all the administration. ‘So I book our hotels, rental cars, flights, anything to do with that sort of thing,’ and leave Jono to the cycling. There are fewer than five seats available, so we need to get that one. – Right. Yep. – ‘Every dollar counts when you’re doing all these competitions. ‘We fully fund ourselves apart from doing fundraisers and that.’ So, yeah, we’ve got to keep the pennies tight. (CHILLED GUITAR MUSIC) (BIRDS SING) – Oh, I love work. You know, I don’t wake up in the morning and think, ‘Man, I’ve got to go to work today.’ It’s not a grind. I work for NZCare Disability, which is a business of HealthCare New Zealand, and I’m a home and community support worker. So, I support people with intellectual disabilities. I take them into the community and do tasks with them. There’s a lot of misconceptions around people in wheelchairs and people with spina bifida. Some people think, you know, that I’m a client and not a support worker, because there’s not too many of us in wheelchairs that do my job. ‘I’ve been working with Mark for six years. ‘He started off living with his parents, and now he’s in his own home.’ Hey, Mark! How are you today? – Welcome. How you going? – ‘He’s come a long way. ‘At the moment we’re working on him developing good, healthy friendships with guys around his own age ‘because he has a lot of adult friends, I guess.’ – So, how was work today? Were you busy? – Oh yeah, always. – Always? – Always, always, always busy. – Did you have any orders to put away? ‘I feel, with having a disability myself, ‘I have a level of understanding that my able-bodied colleagues don’t necessarily have —’ the frustrations that we go through on a daily basis. – Come on. Nah, this way. – Wait up. – You all right? – ‘My role might be as simple as taking my client out for a coffee to the local coffee shop.’ – Keep up, Jono. (BOTH CHUCKLE) You slowpoke. – Oh, slow down. – Slow down, slow down. – ‘It might be that I text one of my work colleagues ‘and we meet up with one of their clients, ‘and we do some role modelling around how to start a conversation,…’ – Fergus! Fergus! – ‘…how to interrupt during a conversation,…’ Go, Fergus! – Go, Fergus! – ‘…basic skills that we probably take for granted that these guys may struggle with.’ – Yeah, I reckon we better start looking at your vege garden, Jon. – Right-o. Right-o. ‘Dad tells a story quite often, when I was born, the doctor says to him,’ ‘What would you like to have to drink, you know, cos this is a bit of a shock.’ – See where your cat’s been. – This is where she goes to the toilet, Dad. (LAUGHS) – (LAUGHS) Oh, gross. Jonathan was meant to have been born around Christmas Day, but throughout my whole pregnancy, I was in and out of hospital. 28th of October 1983, Jonathan was born. But we were not expecting to be told the news that he had spina bifida and a bilateral cleft lip and palate. He was born eight weeks prem and only 2 pound 9, and he wasn’t given 24 hours to live. – You’re actually quite good with that. Might get you one for Christmas, one of those things. (SNICKERS) – Good idea. – It was just a big nightmare, wasn’t it? (SIGHS) Yeah. – Devastating. (REFLECTIVE MUSIC) We were just told to take him home and wait for him to die, but he was a fighter right from the word go. Back then, I was a meek, mild little mouse who wouldn’t say boo to a fly. But then we realised that if we had to give Jonathan a chance, we had to fight. His childhood just consisted of lots of hospital visits. – You know, I’ve kept Mum and Dad on their toes. In the first two weeks of my life, I contracted meningitis. I also had breathing difficulties. I had to have 11 operations on my mouth and face before 1 year old. I had to have a shunt put in because of my spina bifida, because I got hydrocephalus. Mum was a very determined lady and did physio on me every day. So their support has been quite profound for me, and it’s made my journey a lot easier. – Oh, the cat’s gonna go and leave a deposit while we’re here. – ‘Quite often I will call in and see Dad after work on a Friday. ‘We’ll sit down and have a bit of a yarn. ‘Dad’s into making a little bit of home brew. (CHUCKLES) So we have a bit of a sip of that. ‘Me and Dad, we’ve become a lot closer, because he had health issues last year. ‘So, he got diagnosed with prostate cancer, and he had to have radiation.’ Me and him value and know how precious life is. And at Father’s Day last year, I actually gave him one of my medals— gold medals that I won at last year’s nationals. Sorry. Because he, um… (SNIFFLES) you know, he got through the treatment. – ‘We’re immensely proud of him ‘and we always will be. ‘He certainly has got his teeth into the handcycling, and that’s been jolly good for him. ‘He’s always got a goal, and it’s brilliant.’ Hmm. And you taking spare— spare wheels? – Yeah, spare wheels. – All right. – Yeah, don’t worry. Coach has drummed that into me already. I’m feeling a little bit nervous about the race. Not the uphills — the downhills, cos they’re quite technical. Especially the ones where you go 17K’s downhill and then there’s a 15K speed corner at the bottom. – Oh, great. – Yeah. – ‘His love of sport started from about the age of 8, ‘when… Here in Timaru, we’re part of the CCS. ‘They had what we called back then a Halberg after-school programme. ‘And that’s where his love of sport started.’ (ROUSING MUSIC) – What was the turning point for me was when I went to secondary school and started doing sport. In this day and age, disability is a lot more widely accepted. But growing up for me, it was really hard. You know, I used to get bullied on a daily basis. Sport has given me more happy days than sad days. It’s my medicine, I guess you could say. I train six days a week, up to 15 hours a week. I don’t do anything less than 150K’s. So, you know, it’s pretty intensive. (WHEELS WHIRR) – Jono! – Hey, Hans! – Gidday, mate. – ‘I met Hans when I did the tour of New Zealand ‘and they were raising money for the New Zealand Spinal Trust. ‘And then, 12 months ago, I came up with this crazy idea of doing the K2. ‘And I contacted him and said, “Hey, I’d like to raise some money for the New Zealand Spinal Trust.”‘ – Killer climb too. – Yes. – Yeah. – Yeah. – ‘Jono is a very dedicated, very motivated man.’ I think that’s reflected in his work that he does, but also in his cycling. – Right. – All righty, let’s do it. – Let’s go for a ride. – Yep. ‘He will really have to work to his maximum effort to be able to do the K2, which is an incredible ride. ‘You know, thousands of metres of climbing. It will be hard, yes. ‘But he is fiercely determined, and he’s very gritty.’ Show me the way, brother. Let’s ride. – Let’s go. (UPBEAT ELECTRONIC MUSIC) – If I’ve had a hard day, or a long day at work, or I’ve been feeling a bit down, there’s nothing better than going out on the road for a two-hour bike ride, going out to the country and just smashing myself on the bike. I just love going uphill as hard as I can, feeling the pain in my arms. It makes me feel empowered, you know? * – Hey, John. – Hey, man. – How you doing? ‘I’m a very competitive person. Anything I do in life always ends up in a competition. ‘So I love to win, and I love a good challenge — hence why I’m doing the K2.’ – We’re going to have to get up about 4 o’clock, something like that. – Oh, awesome. Just like the Auckland Marathon. – Yeah, exactly. – ‘John is my coach. We have a very good athlete-coach relationship.’ We qualified for the world champs in Canada, and since then, I’ve won three national titles. – With your fluids — you just have your bladder bag on, eh? – Yeah, so that holds 2.5 litres. So I’m thinking at some stage during the race, we’ll have another bladder on standby. ‘He knows what he’s talking about, cos obviously we’re different to an able-bodied cyclist.’ Can’t train too hard otherwise we might get an infection or something, so… He knows how to make me tick. – The other thing I was thinking about a lot is just your catheter. If you can do a stop early rather than later, before you really need to, that could be a way around. – Yeah, I can do that. – Yeah. There’s really close public toilets in Whitianga, and you can ride right up to it, and that’s at about the 55K mark. The two-stop strategy might be the way to go. You don’t lose much time, you know? – No. – It’s better to be over-prepared than underprepared. (BOTH CHUCKLE) Good one, man. – OK, thanks. – OK. We’ll see you later. – Because I’ve got a good team around me, I should be fairly safe. I will have support riders around me. I will have a support vehicle with me that will be at various points around the course. It’s just a hard grind. There’s wind in my face, rain in my face… It’s pretty crap, to be honest. John is doing OK. He’s complaining a little bit, but not too much. He’s done the first 40K with me. Considering he’s done this on no training, he’s doing pretty well. (ROCK MUSIC) – Yeah, he’s going really good. No problems at all. He’s riding well. In fact, I have to remind him just to slow down every now and then. Yeah, he gets a bit tempted to go a bit harder. And it’s not the right thing to do at the moment, cos we’re only 40K’s into it. Hard part to come now — five hills in a row. – All righty. – 150 to go. – See you up there. Yeah, I’m feeling quite good. Everything’s going to plan so far. But I’ve got five major hills coming up. It’s gonna be a real tough challenge mentally as well as physically. (UPBEAT ELECTRONIC MUSIC) I’m just telling myself just to keep those pedals turning, because I know if I stop, I’m in deep doo-doos, and the last thing I want to do is roll down the hill backwards. The good thing is I now have the other cyclists coming past me, and it’s giving me great motivation. The words of encouragement is just spurring me on. My arms are starting to ache at this stage. I’ve got cramp in my fingers. Once I get past the 150K mark, that’s when my mind starts to wander. ‘Go, go, go. Keep going. You’ve got to finish.’ (UPBEAT ELECTRONIC MUSIC CONTINUES) – SHARON: Whoa! Well done. That was amazing! – ‘This stop is quite a relief. ‘There’s a lot of self-talk going on. ‘Me arms are starting to feel a little bit tired now. ‘I’ve had to had help to get into my wheelchair. ‘But, you know, I’ve done a fair few K’s now.’ – I’ll change your bladder, and then we’ll sort your pockets out. – ‘I’ve drunk over 2 litres of water, ‘and it was just good to get into my wheelchair and have a bit of a shake around. ‘But I’m happy with how things are going. ‘John has given me some good positive feedback. He’s happy with how I’m going.’ – Carry the muesli bars? – Oh, no that’s… – There’s five hills that are quite big hills, and that last one, yeah, just dug in a bit. And he went to a bit of a dark place for a while, but we got through it. Right-o, Jono. Home straight, buddy. ‘Hopefully this is the last stop we’ll have now. 65K to go from here.’ I think when we get over the other side, he doesn’t know it yet, but he’s in for a lot of headwind. – We’ll keep it? Is that what you’re saying? – I think so, yeah. – ‘And my hands are starting to ache a little bit, ‘but I’m still feeling good mentally, so that’s the main thing. ‘I won’t start thinking about the finish line till the last 50K’s, I reckon. ‘My next goal is to make cut-off, which is 330 in 10. ‘Once I get past that, I know I’m on the home straight.’ (UPLIFTING MUSIC) – Most handcyclists, well, most able-bodied cyclists, would’ve pulled the pin and gone, ‘Nah, this is too hard on the body. I’m giving up now.’ But Jono’s just kept going. He’s just proved how he can just beat the odds again, like he did when he was younger. Go, Jono! – WOMAN: Well done! Well done! (CHEERING, APPLAUSE) – This is something you only do once. I’ve already promised Sharon that I’ll never do it again, unless someone offers me some money next year. (UPLIFTING MUSIC CONTINUES) – I’m nervous. He’ll be in a lot of pain by now. So proud of him, so proud of him. We’ve done so much training over the last year to get to here. TEARFULLY: To see him come across the line will be really good. – So, I can see the timer in my sights, and I’m just going as hard as I can, given the conditions that I’m in. And, oh, just crossing the finish line is just absolutely amazing. (AMBULANCE HORN TOOTS) I’m feeling very proud of myself. I love that sense of accomplishment. Oh, I’m so happy. Oh, thank God it’s over. Yes! If you put your mind to something, you can do anything, you know. Your world’s your oyster, basically. The only disability that anyone has is a bad attitude, and that’s a saying that I live by every day. OK, I’m in a wheelchair, but, you know, I try and do most things in life. Captions by Jade Fernandes. Edited by Ellen Sinclair. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2021

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