Christine - Ellie's Couch transcript

Ellie: Christine, thank you so much for coming in today. I hope you're excited for our chat and get to know each other.

Christine: Yep, I am, yeah.

Ellie: So tell us a little bit about yourself.

Christine: Yep. I'm Christine. I'm the business manager for the New England region. So, rural being Armidale, up to Tenterfield, over to Inverell, down to Walcha and everything in between. And I'm 54 years old.

Ellie: Well, I've only heard of one of those places before and that's Armidale. You flew in from Armidale this morning?

Last night.

Ellie: Last night. What's it like living out there?

Christine: I was born and bred there. I did move away for roughly about eight, nine years. I had to move north with my disabled daughter for warmer weather and then eventually went back home.

Ellie: And what was it like growing up there?

Christine: We were out in the dirt. We didn't have computers or anything like that. It was mainly just outside, you know, you bred your own chooks, absolutely everything, grew your own vegetables. You're out doing gymnastics on the front lawn, riding a push bike and that. So growing up, it was amazing.

Ellie: Sounds like an idyllic childhood, really.

Christine: Yeah.

Ellie: Yeah. And I can see your face light up when you're reminiscing about it as well.

Christine: Yeah.

Ellie: Do you have chickens now?

Christine: No.

Ellie: Do you have any like kind of land out there? I'm assuming that a lot of people - I'm just making assumptions here - that a lot of people that live out in rural areas tend to have a little bit more land than what we would in Sydney.

Christine: Look, the yards are big.

Ellie: Yeah.

Christine: But unless you're sort of kind of on the outskirts and owning properties and that sort of stuff, yeah. But the big old homes that are there, they have massive yards.

Ellie: Yeah, nice.

Christine: Yeah.

Ellie: Maybe I'll move there!

It seems like you had a lot of positive family influence growing up.

Christine: Yes. So, I'm the baby of eight.

Ellie: Oh, really? Wow.

Christine: Yes.

Ellie: The smallest of eight.

Christine: Yes, the baby of eight. So, yeah.

Ellie: What was that like, growing up with eight siblings? So, you had 10 people living in your house?

Christine: It was adventurous, I could say that much. When one got into trouble, everyone got into trouble. Yeah.

Ellie: It's probably easier for your parents to have everyone in trouble than try to find out who did it out of eight different kids.

Christine: Yeah, that's exactly right. yeah.

Ellie: And the wonderful thing about having a lot of siblings as well is that I'm sure, and particularly being the youngest, you had a really good influence from your older siblings. And I'm sure each of them having different personalities would have taught you so much about working with different people, right?

Christine: It does. And it also, you know, you put your heart and your soul into your work. We were taught, you know, growing up that when you're in employment and things like that, you dedicate yourself to it. You know, you work hard. And if you work hard in life, then you'll achieve what you need to achieve.

Ellie: It sounds like you've got an amazing work ethic.

Christine: Yeah.

Ellie: But you live in a great area as well to relax, by the sounds of it, too!

Christine: Yeah, yep!

Ellie: So, you mentioned that you had a daughter that had a disability.

Christine: Yes.

Ellie: And you have - do you have any other kids?

Christine: I have a 27-year-old.

Ellie: So you’ve got two kids?

Christine: Yes.

Ellie: Yeah. And what was that like?

Christine: Look, to be honest, I had my first daughter – and absolutely amazing. I ended up having – when I had my second daughter, she was born premature at 26 weeks, 6 days. So, she was in the Royal Randwick Women's Hospital for quite some time. She was diagnosed with Chromosome Ring 22, and then she also had Cerebral Palsy.

Ellie: From premature birth?

Christine: Yes, yeah. As she grew up, I don't know, I think it was mother's intuition. I just, I knew something wasn't right. And then, you know, she started fitting, having major epilepsy and stuff like that, being in hospital all the time. You know, you could say maybe three days a week if I went and picked my other daughter up, I'd have to stop at the hospital and have her rescued from having a seizure. She was non-verbal, all that sort of stuff.

But then she went in to have leg surgery and during the leg surgery she had a stroke. And we were up in Brisbane at this time, and we spent eight and a half months in hospital and we found out – it was 2 days prior to the Christmas before she passed away – that she had a condition called Phelan-McDermid Syndrome 22q13 Deletion.

So, what we found out is her organs and that went into regression and her body just shut down. Her seizures ended up a thousand times worse. And then I took her home to be with family, to spend a bit of time with her.

And then on May the 12th, the year after, she passed away. So, yeah.

Ellie: And her passing, was that attributed to the new syndrome that she was diagnosed with, with the organ regression?

Christine: Yes, yeah.

Ellie: So effectively organ failure.

Christine: So, they do say that, you know, it can be something like pain that can trigger it. And obviously she had both ankles done and she was in a lot of pain and she just didn't come back from it.

Ellie: If we go back to when she was born, she was born 26 weeks. What was that experience like for you going into the hospital knowing “hold on, like she's not supposed to be born for another few months?” I know a lot of people who have been born prematurely being on the Paralympic team. And I know that, you know, in 2024, the experience of having a premature child is so different than how it was, I'm not sure what year she was born in, but what was the experience like for you?

Christine: The experience knowing that she was coming was frightening, but I also knew as long as I stayed strong, then hopefully she'd pull through as well.

Ellie: And how did you find you dealt with that experience emotionally? Because going into something like that, there are so many unanswered questions. It can be really hard to navigate, I'm sure.

Christine: All I could do was go with it, yeah.

Ellie: Yeah, yeah absolutely. And what was she like when she was growing up?

Christine: Gorgeous, cheeky, mischievous, into everything! So, she couldn't walk, but she did crawl. She could pull herself up to stand. Verbally, she only had a few words, like “mom” and, you know, we used to do a bit of sign language with her, but we also got to know her to the stage where we knew what she wanted.

Ellie: Yeah.

Christine: Just yeah, really mischievous!

Ellie: You had a real mother's intuition, hey?

Christine: Yeah, yep.

Ellie: What's your favourite memory of her, if you think (back)?

Christine: She used to go into her sister's bedroom and she loved really loud banging heavy metal music. And my daughter would have the music on, and she'd stand up at the stereos and literally stand there and just banging her head 24/7. But then all of a sudden, the stereo would smash because she's holding onto it, like, banging her head and things like that. So, even though she was only 10 and 10 months when she passed, she did get to live her teenage years through my other daughter and her friends, which is amazing.

Ellie: Yes, her older sister.

Christine: Yeah.

Ellie: And, she sounds very, very cheeky.

Christine: Yes, yes.

Ellie: How did her passing affect your family, and especially your other daughter, who was older at the time?

Christine: Yeah… well, I'll just be honest. Because I was with her for the eight and a half months, they tried to prepare me for the outcome. I don't think anything will ever prepare you for an outcome. When I did take her home, I sat with what they call the Robyn team and there was a specialist from the Phelan-McDermid Syndrome team there and they explained it all to me.

And it was – I had already signed a do not resuscitate because of her seizures. And I was at that stage where I had two choices, and that was to keep her up there in Brisbane Hospital, or to take her home and be with family. So, we took her home, I took her home on Valentine's Day that year and surprised her sister, and then pretty much just had to explain it to them. And I don't think you're ever ready for anything like that. I think, you know, you've got to make the right calls. It was devastating. It devastated everyone.

Ellie: It must be so difficult to get to the point of having to make a decision like that.

Christine: I would never wish it on anyone, to be honest. There's an old saying that, you know, when you lose a partner, you're a widow or a widower. When you lose a parent, you become an orphan. But when you lose a child, there's actually no words for it. The pain is, it's horrendous. Yeah.

Ellie: Absolutely. I can only imagine.

Christine: Yeah. Did I doubt myself as a mum after it happened? Yeah, definitely. I didn't believe that I did everything in my power that I could do to help her. But after a while, I knew I did.

Ellie: If you look at yourself as a person before you became a mum, and then if you look at yourself after going through an experience of losing a child, how do you think that has shaped you now and we've given you a different perspective into things?

Christine: Yep, it has shaped me. For the first 12 months after my daughter passed away, I hated everything in life, and I mean everything. I threw myself into work, working 24/7. I never focused on what had happened. And then around the 12-month mark, I did have a total meltdown, total breakdown. And then one day I just sat there and I just thought to myself, “I can either make good out of this or I can make it bad.” But I also knew in my heart that she would want me to keep going and help people the way I helped her.

And that's why I do what I do.

Ellie: So that's why you have entered into your role now at APM, (it’s) to help other people.

Christine: Yep.

Ellie: That's amazing. So how long have you been working at APM for?

Chirstine: Four years. So, two years as an EC and coming up to all but two years as a business manager.

Ellie: So what do you love most about your role?

Christine: I'm going to have to say the participants.

Ellie: Yeah?

Christine: Yeah. I love sitting there and I love listening to what they have to say. But I also like to try and - I'm a bit of a brainstormer. I like to be able to help them achieve what they want to achieve. So, if it's a little step like getting counselling, help them find the counselling service. If it's the little step of, you know, they need help doing a resume or they just want to sit and have a day-to-day conversation about what they would like to do and how do they do it, then that's what it's about.

Ellie: I think when people think of employment, they think of going from point A to point B. But it's not like that, is it?

Christine: No, it's not. It's about having an open mind. And you know, you might say, for instance, have a mum who's never worked, OK, she's just been a mum. And you've got to really look at those transferable skills, you know, you think about what a mum does on a day-to-day basis. I know what I did as a mum. You know, a dad – he might have been a stay-at-home dad. What did he do? Can we use those sort of things to use those transferable skills to find that perfect employment opportunity for them?

Ellie: Do you live with a disability yourself?

Christine: I do, yes.

Ellie: Tell me what that's like.

Christine: So, I've actually had a laminectomy on my left side of my spine.

Ellie: Laminectomy?

Christine: The removal of the C6, C7.

Ellie: OK!

Christine: Yeah. So, having Chloe, growing up, she used to fall asleep on the floor. I picked her up – she was about, I don’t know, about roughly 58 kilos – I picked her up and as I've picked her up, I lost the feeling in my legs and her body weight fell back on me and I smashed the C6, C7. So, in 2018 the neurosurgeons decided that they'd operate because to be honest, you know, I'm on a lot of painkillers to control the nervous system and the pressure. And so, I had the surgery in 2018 and have a lot of weakness on the left-hand side.

About 18 months ago, I was diagnosed with Raynaud’s, where my blood cells don't open up enough. So, (I) ended up having treatment for that and ended up in hospital having an infusion of iloprost to open up the smaller blood cells to make the blood pump and that sort of stuff. Otherwise, I'm freezing cold 24/7.

Ellie: Yes! I’ve met someone that's had Raynaud’s before.

Christine: Yep. Feet go blue. I just started to get really fatigued.

Ellie: Because of the lack of blood supply?

Christine: Yeah. It will never go away.

Ellie: Yeah.

Christine: I'm constantly, at the moment, having injections, B12 injections because I've got anaemia now due to it. In that, I also have cortisol on that as well because I have Addison's.

Ellie: It’s a hormonal… Addison’s?

Christine: Yes, Addison's is where your adrenaline glands don't form enough adrenaline. And then you've got to have the cortisol injections to keep yourself going and have that adrenaline. Otherwise, you just end up in bed and going to sleep.

Ellie: So much fatigue, I'm sure.

Christine: Yeah.

Ellie: Yeah. And what's it like to have your team at APM recognise those signs and maybe tell you that you need to rest a little bit?

Christine: Well, like you’ve said, I'm an open book. So, I like to be open and I'm upfront with them because, you know, I'm hoping that, you know, if I ever did have an Addison’s crisis and ended up dropping to the ground, they'd know what to do and they'd know what help to get. Because I know in turn, I would do the same for them.

Ellie: Absolutely. I can definitely see in turn helping them if they need help. I think it's human nature to want to help people.

Christine: It is.

Ellie: Do you think your experience, and lived experience of having a disability yourself, has translated into your role at APM?

Christine: Definitely. I think it's all my experience from having my disabled daughter, to me now, to, you know, having my daughter's friends who had, you know, cystic fibrosis and things like that. It's just the experience I've had. I can use that on a day-to-day basis to try and help someone.

Ellie: And what's it like do you think, for the participants that come into APM? You said you love working with the participants at APM. What do you think it's like for them to be able to come into the office and to be able to have someone who's sitting across from them who understands what they're going through and what they're feeling and what their experiences have been like?

Christine: I'm very lucky in that sense because a lot of the participants that we have, being rural and things like that, they know, you know, who I am, how I will help them. I haven't disclosed everything I have, but there's little things I have, to help them understand that we can help them. You know, we can guide them, we can support them.

I'm very lucky. I have a great rapport with practically nearly every client in our region. So yeah, it's a bonus.

Ellie: And being rural, do you have a real connection with almost like, well, you've grown up in the area, right? So, you must have a connection with so many people that live in your community. And then to be able to help those people in the communities to be able to live an amazing life, to be able to give them the choice of what they want to do with their life. It must be just incredible for you.

Christine: It's an amazing feeling, but it's also great, you know, with the businesses that are in rural, is - they've got that awareness now. You know, not everything is based (on), “OK, you may have your illness, injury or disability, but there's ways around that.” And I'm finding, especially in the rural areas, there's more… they're open-minded more now, you know, they're seeing a lot more of it and they're willing to work with us.

Ellie: I think that's one of the most amazing things about having a disability or going through a kind of hardship, is that, you know - we were talking about transferable skills before with life experiences - you learn so much about how to be agile and how to adapt.

Christine: Yes.

Ellie: And to be able to be given an opportunity to showcase that and to use it as a real skill that you can't really learn from a textbook. It's amazing.

Christine: Yeah.

Ellie: Especially as a participant of APM. What's your favourite part about working for APMI?

Christine: I love the support.I love the inclusiveness. I know when I was first diagnosed with all this stuff about 18 months ago, I couldn't have got better support from them. And I also know that if I have a day where I can't get out of bed (and it does happen), then I know I can pick the phone up and just go, “I can't do it.” They're not going to judge me. They're not going to, you know, fire me or anything like that. They're very supportive.

Ellie: I think it can be really scary for people to be really vulnerable, especially when it comes to disability, because everyone's experiences have been so different. But I know as a person with a disability in the sporting field, that showing our vulnerability has resonated really well with the Australian communities.

Christine: Yes.

Ellie: So, what would your advice be to someone who was coming in that was feeling quite vulnerable and not really sure how to approach that conversation, of having (an) open-ended conversation?

Christine: Take your time. I think take your time, and like I said, it's about, you know, that open-ended conversation and the rapport. And I think, give them the time to be able to get themselves ready and start with little steps because if you put too much pressure on people, it just puts them back into a shell and you know, they don't feel supported and things like that.

Ellie: Definitely. That's very sage advice and I think from any walk of life, that's really good advice.

Now growing up in Armidale, you've spent a lot of time in the communities there. What do you think having local knowledge has offered you in terms of your role at APM?

Christine: I think having the local knowledge - firstly, being an EC and travelling so much, and doing the areas of… like, I was in Armidale but did Inverell, Glen Innes and Tenterfield. I think I gained a really good rapport with the businesses and things like that, the community entities, you know, disability support workers to absolutely everything. And I think now moving into the BM role, it's been a bit of an advantage.

So, I talk to the participants and that sort of stuff. So, even on a Saturday or a Sunday, if you're going downtown for a coffee, you can guarantee you're going to run into a participant, an employer, you know, just absolutely anyone. So, you might go down for a half hour coffee and it's two and a half hours later, you're getting home. SO, yeah.

Ellie: It sounds like you've got a really good connection with your community there.

Christine: Yep.

Ellie: Yeah, it sounds amazing. Where do you see yourself going from here? You're a business manager now. Do you like this role? You'll stay in it for a while, or do you see yourself maybe running APM one day?

Christine: No, definitely not that! Look, I love what I do. You know, I think being 54, I'm at that age where - what do I do next? I don't know. My ultimate goal ever since having my disabled daughter is to just advocate for people with illness, injury or disability. Am I going anywhere? No, but you know, I'm here for the long haul. I can't see myself changing anything at the moment, but it'll be a wait and see.

Ellie: I'm looking forward to it. And, I said before, it's just amazing to be able to hear your story today and to hear about how you're using your daughter's legacy to enable better lives as well. And the amount of people that you have positively impacted and in turn, your daughter has positively impacted, will live on for such a long time and then positively influence other people. So, to be able to have you do that for APM and have you do that for us is a real honour really.

Christine: No, that's okay. You know, I always believe, even though it wasn't the best time, at least I can try and get something positive from it.

Ellie: Absolutely, I think we all have. Thank you.

Thank you so much for coming in and sharing a story with us today.

Christine: All right. Thank you.