A Wheelie Good Chat
A Wheelie Good Chat is hosted by me, Sam Cole. I dive into real-life experiences of living with a physical disability.
With raw honesty and a touch of humour, I explore everything from daily challenges to societal assumptions, shining a light on the stories that often go unheard.
Each episode features open conversations and reflections that aim to break barriers, challenge the norm and inspire more inclusive thinking, one chat at a time.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
A Wheelie Good Chat
35. Part 1 - Mum & Me: Navigating Our Early Days of Change with Di Jones
What happens when a mother’s role changes overnight? In this heartfelt episode, I’m joined by my mum, Di, as we reflect on my sudden onset of dystonia at age eight and how it reshaped our family.
Mum shares those first terrifying days, watching her active farm kid struggle to walk, endless hospital visits, and tests that offered no answers. We talk about my early optimism clashing with teenage reality, the emotional challenges that followed, and the life-changing decisions she faced about treatments like Botox.
Through it all, one philosophy guided us: accessibility without limitation. From school to abseiling and skydiving, it was never about lowering expectations, it was about making things fit.
For parents, carers, or anyone moved by stories of resilience, this conversation is equal parts raw, challenging, and comforting. As Mum always says: “I will always be okay, and so will you.”
Thanks so much for listening to A Wheelie Good Chat! Your support means the world.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
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I wanna start this episode of A Wheelie Good Chat by acknowledging that I'm recording on Whadjuk Noongar country. I pay my respects to the elders past, present, and emerging. Always was. Always will be Aboriginal land. I'm your host, Sam Cole, and this is A Wheelie Good Chat where I get real about life with a disability and everything in between. Yes, even the not so PG stuff. I live with a condition called dystonia and I started this podcast to break stigma. And share the things we as a society don't talk enough about. Hey everyone. So I'm really looking forward to this episode today. If you've been listening for a while, you would know that I often mention my beautiful mum, and I'm grateful to have her on this episode today. This episode today is going to start off, about, my diagnosis and the early days, before I got, sick as I call it. And then. how mum felt, the responsibility of being a mother then to a carer and those kind of discussions we're gonna have. So I really hope that it's gonna be a insightful discussion for you. And hello to my Nice to finally be on here. Yeah, thank you for joining me and being available in your busy schedule. Retired life. I'm never busy anymore. Yeah. So do you mind telling us a bit about yourself? A bit about myself. Okay. Um, my name is D and I was born and raised in. Perth. and then I married Sam's dad and I went to live in, a country town, uh, but actually on a farm in between two wheat belt towns where my son Jake and Samantha were born. That's exposing me there, mum telling, everyone my full name. Well, okay. And you're not even in trouble. Yeah. So, from there, Jake and Sam, uh, are only 14 months apart, and they started school and went to one of our local towns. and just everything was normal. They did all the country town things. They swam, lots of cousins, lots of extended family, on their dad's side. lots of good people in their life, lots of people that cared for them and looked after them, and they went to that school until just after Sam's illness started. Hmm. I have mentioned in, I think it might be in the first episode or second episode, about how I remember, you know, getting sick as I call it, you know, began. But I think it would be good from your perspective to hear how you remember it, if you're comfortable with that. that's fine. That's why I'm here as, um, I guess my, memory will differ somewhat from yours. as in timeline and whatever you grew up, you went to swim club, you did Netta, you ran in all the school carnivals, and achieved at school. no problems at all. I guess the first thing I noticed was one night you were very, upset. You didn't look well. but like any other parent, I guess, I gave you a t Panadol and thought, I'll see how you go in the morning. you were always a fairly placid child. um, you know, he never got sick very often. Uh, those sorts of things. But I wasn't overly concerned as well. I mean, in hindsight, I wish I had of done more. But having talked to the doctor, the doctor said, you know, if I had have taken you in, he possibly just would've said. Give her some paracetamol and bring her back if you're not better. you insisted on going to school the next day. I worked in the pharmacy in Narembeen at that stage, It was a Wednesday, and I had the day off and I suggested. You stayed home. You were just a little unwell, bit teary, but you insisted you could go to school. you hopped on the school bus. Uh, and I went about with my day as I normally did, having heard nothing from the school. but when you got off the school bus, you were leaning very much to one side, almost dragging one leg, and constantly drooling. No one at that particular school had. advised me. then once children started getting home from school, I did have a call from a couple of parents, from my friends and, that, that said that their children were upset because you were so upset at school. at this news I took you into town. your auntie, my sister-in-law did bowen therapy. Took you there and you were only with her about 10 minutes, and she said, I should take you to the hospital, which we proceeded to do, took you to the hospital. the doctor didn't dismiss me, which I had already decided that I wouldn't be dismissed on this one. This was something that I, I knew wasn't right. I just felt it. Um. And we were advised that we should come through to, what was the Princess Margaret Hospital in Perth. Mm-hmm. But we couldn't get Royal flying doctor because you weren't considered, an at threat or emergency case. So luckily for me, your nanna, drove through. Your dad wasn't her, Um, with me to Perth. And you just laid on the back seat. Mm-hmm. Went to PMH, and they decided to admit you after they'd done fruitless scans and all sorts of tests. You admitted to intensive care, where you remained for about, uh, four days. The doctor there, the, the pediatrician there told me that the likelihood of us going home without ever knowing what was wrong with you I, I knew there and then that nothing would ever be the same. wasn't so much what he said, um, that, that looking for a diagnosis, which, which I guess in the very early days, a diagnosis was really important, because it would've given us a, a way forward, um, be that therapies or. drugs or whatever it would take. Um, but over the next three and a half, four weeks that you are in PMH, um, and after numerous tests, you were tested for drugs, alcohol, chemical poisoning, because we were from a farm. Um, we were questioned at length about our own drug use, about, our home life, which is all quite understandable with when you have children like that. you were tested for all those things. Then we got down to things like you were tested for, for ticks, made sure you didn't have ticks. Guillain Barré, which is a, um, usually a, an ascending paralysis. From there, after about a week you stopped talking. Completely. you couldn't eat, I guess if I couldn't talk, I couldn't eat. 'cause of the tongue? Well, that, that's because of the tongue. You could swallow, you could do all that thing. So that mechanism. Mm-hmm. But the tongue being such a large, um, intricate muscle mm-hmm. You couldn't do that. you were given a nasal gastric tube to which we had to feed you through, and, uh, that was pretty intense. you were only, and have always been only a little tot you were never a large child and you lost over 10% of your body weight. Wow. Almost 20, like it was a good 15. in the space of like, how quickly did others, that weeks, a few, couple of weeks Mm. And I'm sure that like, would've been scary enough seeing, your, 8-year-old daughter, you know, just, just fading away physically, let alone, the unknown of what actually happened or it was happening at that stage. Yeah, it was, it was really difficult. and I guess, when you're in that moment, and I guess that's with anything, you just can only deal with. What's there and that I was, I was particularly concerned about, your weight loss. But I was more concerned about the incredible deterioration in your physical ability, And also your, um, vocal ability. and it was after a short amount of time that your body started to, for want of a better word, deform a little so your hands wouldn't open. Um, your elbow, your arm was right up under your chin. Uh, we had to be really careful. You didn't choke yourself. But along with that, I was dealing with the day to day. So I was dealing to make sure that you got. Nutrients with your nasal gastric tube getting up during the night because you had a monitor to feed you. Um, but at this stage also, I had Jake, and we were also incredibly fortunate that we lived where we did, had wonderful friends, um, great relationships with my extended family, my in-law family, um mm-hmm. And I was incredibly lucky to have such supportive friends who, um, had Jake at a moment's notice. Mm-hmm. Because it would've been very difficult for him at only you were eight. He. He had just turned, you weren't far off nine, he'd just turned 10. and all of a sudden his life changed as well. Mm. Oh, absolutely. Um, yeah, and I, and I think I have mentioned that in one of my episodes um, I always think about, you know, the sibling in a, a, um, you know, a family that has a child that has a disability, like, you know, the sibling, you know, you can often get forgotten or, um, you know, not, not asked about as often. Um, so, you know, I you know, often, you know, uh, think about my brother in that aspect. there's always been studies done about, the siblings of children, With needs outside, be they all sorts of, needs. and being in, in hospital for such a incredible amount of time. Mm-hmm. And yes, for the attention that was bestowed upon you, um, the gifts you were given, all those sorts of things, would've been difficult for him. Mm-hmm. Um, and I mean, you always look back, did we do the right thing in keeping things as normal as could for him? you do the best you can at the time. Mm-hmm. Yeah. And I think there's always, you know, parent guilt and in my case mother guilt about what could have been done. And, but when you, when you are in that time, all you're doing is trying to get through it. Yeah, for sure. So, I think I had decided. In hospital. And I think I even said to one of your aunties, our life as a family will never be the same. And I, and I knew that then. Um, it was just a feeling I had, just something I knew. Um, but through it all, you've never changed who you started out to be, I think, and that, that's really important. Um, we were never going to take you home and sit you in front of a television and that was just your life. It was always going to be advancements and we would always take those opportunities to provide. Mm-hmm. And we were very, very fortunate that we're in the position to do that. absolutely. Yeah, that made a huge difference. And uh, we have to be very grateful for that as well, that we had the ability to. Afford you different sorts of therapies that didn't come through the public system, so While it wasn't always easy. and even financially sometimes we certainly had that ability, I guess. No, that's something, yeah. Important to kind of point out, you know, The ability to, to provide those things as much as you want to. And certainly there were things that was, were out of our reach, um mm-hmm. it was a bottomless pit, but we were certainly. A, a little more advantaged in mm-hmm. In that way that, and, and not only financially, but also the fact that the support within small communities was allowed as I had a, a beautiful friend who set up a roster of, uh, people that came and did therapy for you, which allowed me to, um, even if it was just sit in the sunshine or Nick into town and do my shopping or, and she set that up and we had people, not only that were my friends, but just people in the community that wanted to help. they came and, and worked with you and it was just interaction for you, for an extra couple of hours a day. Um, so having people do that. Um, but we didn't have all my friends on that. I had my friends that were my support as well. Mm. And the good thing about that was we tried to keep it a bit separate so that mm-hmm. You had the support for people, but we weren't o hopefully overtaxing friendships and relationships at the same time. Mm-hmm. Mm-hmm. Yeah. Yeah, for sure. So, so I guess from your, stay in hospital, we went back and we were also incredibly lucky with what we had in Perth too. my family was in Perth, so therefore we had people to stay with, uh, people to visit you. People I could rely on. Um, my niece lived here, you know, people that used to were close to you. So we were, look, when I look back as mm-hmm. mm-hmm. Difficult. They're the things I remember. Mm-hmm. I, yeah, I, I think I also, sorry. I also remember how incredibly innocent and, how you viewed the world in those days. And in a lot of ways that's actually, that was sort of difficult for me. because I guess being older, my world of the, my view of the world was a little bit more jaded, had this incredible optimism that this was just a bit of a hiccup in life and, over it, it was never gonna be for you. It was never long to him, I always thought, oh, it's just like, oh, I'll wake up one day and it'll be all reverted back. Yes. Yeah. and while that was a really good positive, thing to carry through, it also in later years created, I guess it created issues for you when you did realize that it wasn't going away, and particularly when you became a young teenager when things didn't change, when, you did realize you were disabled. Mm. Um, those were really emotionally taxing years. Yeah, absolutely. But yeah, you did always have this incredible attitude and, and do you know what, so did Jake. He never treated you any different. he still just, um, got on with things. His attitude to you never changed. Never treated you, special, I guess. And actually that was really nice. It still doesn't Oh, Whether we never treated you any differently. No. It must have been incredibly difficult for, um, for him too. As, as well. God yeah But if we ever, you know, um, ask him about it Um, he doesn't really give much, which is no very much a, male trait kind of thing. Just kind of be a bit dismissive, which is understandable. Yes. But I guess he was no 10, so he probably doesn't really, think much of it. He just kinda like got on with it. Yeah. And his memories will be like yours, their child memories. Um, so that makes them a a little different. Yeah. Mm-hmm. So you went back to the farm with the nasal gastric tube. and we were very, also very fortunate at the time to, for the Allied Health Services, uh, there, but we had a wonderful, and you would remember Matt, a wonderful physio. Mm-hmm. Who, there's so much you could say about him, but he got us and he got me. and you through an awful lot of things. Yeah. He was quite an amazing human in that time in our life. and he'd done quite a bit of work at PMH too, I think. he was a really good support from a professional point of view. and you couldn't attend school, so I homeschooled you. Oh God. I Look, luckily at the time it was, um, side, so isolated distance Ed and I wasn't required to have the outcomes and things that they require of parents at homeschool. but we did a lot and I, I kept you occupied for a few months until you finally went back to school. Um, and when I went back to school, was. Uh, like my choice. Was it your choice? Was it like the doctors kind of like, yeah, you're ready to go back. Look like It was a combination of everything. And I think living on a farm was particularly isolating for you. Mm-hmm. And you needed the stimulation of children and Yeah. and of learning. You were quite capable of learning. Um, it was more the fact of when you went back to school, we had to make sure that, well, you had to have a, an ea so you had to have an education assistant, that had to be put, put in place. All those things take time. going back to school was a great thing, but it was also a really difficult time as well. With it came naturally came um. Parents, bias, you know, and I guess discrimination. And that's, our first taste of discrimination would have been that year when you didn't receive a school report. And it was put back on me that the principal there had said to me, well, I should have followed up and made sure you got one. It was my first letter writing, dipping my toe into the, the disability sector and what that actually meant, for you moving forward. when that wasn't brought to a satisfactory result, then I made, well, as a family, we made the decision to change, you two to Narembeen school. Mm-hmm. Uh, and I think we've discussed as a family, is the fact that, it singly probably one of the best, most, yeah, probably one of the best decisions as a family we made. the school was accommodating. they gave you reports, but then they read the letter I wrote, so they probably wouldn't have not given you a report. you, you had wonderful EAs. Um, but it changed everything. Um, but we made that decision in consultation with, school with Jake. Mm-hmm. Who would also was also going to change schools, of which he actually was really quite happy to move schools, I think because I was so good at sport. He he he get in there. But, um, we're not a athletic family, we enjoy it and I think, yeah. Look, I don't know, but look, he was quite happy to go. We were particularly lucky It really was a great school. It was a great school for you. It was a great school for Jake. it allowed me different friendships. I was on the school board. Mm-hmm. there was always everything was done, with your disability in mind. So if they needed steps, they didn't get steps, they got ramps. It, it was never a question or never a debate. It's more like, when can we get it? Absolutely. and it was the same with, um, school buses. We had teachers that would help you off the school bus. in other areas that wouldn't have happened. So we were particularly fortunate that we had all those things, available to us. And then you got a school bus. Um. But yeah, your, your life so understatement changed measurably, but you never, you never dwelled on it. I guess that was the thing I, and I can remember one of your EAs you were doing things that had happened in your life that changed your life, and she said to you, what do you think you've had changed your life, Sam? And you said, I don't know. She just looked at you and blinked, thinking of all the change that you'd been through, and you go, oh, I guess I had to change schools. so that, that was all you remember. You didn't, you didn't say, look, I'm in a wheelchair now. I used to be able to walk. I used to be able to run and swim and mm-hmm. And all those things. So, um, I guess that's your take on it. You never dwelled on, on what had happened, all or where you'd come from. Yeah. But no, that, that was a good decision, both from a, from a schooling point of view and from a family point and mm-hmm. And speaking from me, from my point of view we were very, very fortunate and still are very fortunate. and also I guess like leading on from that, like, I guess, you know, your emotional world changed as a mother, like, you know, as to I guess the carer, I mean, you're still my mother, but like that kind of shift of, in a way. Yeah. I, I guess as parents, you all think, we all think that as your children get older, they become more independent. Um, they find their. Way in the world, which you have, but differently. But it did bring a lot of challenges. It, you wouldn't stay with anyone. We had one person you would, or two people you would stay with. You wouldn't go to the toilet for anyone else. You wouldn't mm-hmm. Um, let anyone else shower you. and a lot of those things were based because I always did it. And for the fact that I wanted to protect you. as much as I could. Mm-hmm. And that meant it being me, but it also meant. Didn't go places the same way my friends were. Um, I found it really hard to, take time away mm-hmm. if I came to Perth for the day, it was always during school hours, so I was home for you. So I never went away if there were, 'girl weekends I didn't go. I found it difficult to go back to work, until you're a little bit older. Um mm-hmm. And I'd always worked part-time before you got sick. So when you got sick, I left my job, I went back every now and then. But you were always the priority. Mm-hmm. Mm-hmm. And I guess that changed my life enormously, but I always felt it was certain times I felt it was, it was never about me, but it, because ultimately it wasn't. It was always about you having the best life you could. there were lot, there were lots of things I didn't do. and my life was Is that because you felt you couldn't or was that because of my response to you not doing, or not going somewhere that's a question like, which came first, the chicken or the egg? because I look back now and go, did my need to make your life so good, make you like that? Or was I like that because you made me feel like that? I, I don't know. I had never. Uh, yeah, I, that I still don't know. And do you know what, now it's less important because, since you've been an adult and we got through your horrendous teenage years, which we'll talk about in the second part of this. 'cause that's a whole story on its own, a whole nother world. so I guess those things, I don't reflect on them all that much because my life is very different now. yeah. My life's different to my friends. But it's not, and I guess you've talked about this, it's not worse, it's just different. it's what you and I do now. Mm-hmm. So I see. How my, I don't look at, sometimes I do, I guess look how my life could be different. that I could just jump in my car and drive to the farm or mm-hmm. Um, and I can't do that or I don't do that. Mm-hmm. Because there's organizing for you. It's different for me, wherever you and I go, we have to make sure it's accessible. but I think they're all logistic things. The hardest thing I found was the emotional difference. So having to watch your pain and anguish realizing that you were disabled. And you begging me. That you weren't always going to be like that. as a mother, you sort of wanna kiss and make it better. And I knew I couldn't. That was and, sometimes is still really, really raw, there's not a day goes by then I wouldn't swap. That, that I wouldn't take what you have and, you know, you have a, less old, that's what I find really difficult. You feel if you could, like, you kind of would in my place. Without a doubt. and I don't think there's many parents, you know, people go, why aren't you good? You know, you've, you know, you look after Sam. Well, I don't think I am. You know, you read of people that, um, in paper and you go, oh, you know, that's a really tough life. And gee, they, they do that really tough. And then I, I realize that's us. and I don't know what it is. I don't see it like that. I would never, you know, and I'm not saying everyone is, is different, and I'm not judging those people. And we've talked about how some people's, what tips some people, what doesn't tip other people, I guess. And what some people find, It's good to manage other people. Yeah. That's right. What, what you manage. And I see people on television programs and they're going, you know, this is my life and this is what I have to deal with. And I, I feel mm-hmm. Find myself feeling sorry for them until I realize that's actually you and me. Mm-hmm. That's or our family that mm-hmm. That's what we do. We deal with that. We deal with other people's prejudice. We deal with that. Our day to day changes of not being able to go to celebrate someone's party because you can't get in Mm. Of not being able to go somewhere 'cause there's no accessible toilets That is your day-to-day life. It's, it's far less mine now than it, than it used to be, but, but as a small child. we could lift you. We could carry you. if we got a, a room that wasn't, accessible, we could lift you into the shower as you became an adult. those barriers mm-hmm. Were always and still are there, you know, and if I could, if I could change one thing about when you were little, when you were growing up, it'd be for those barriers not to be there, for you to be able to a AC access participate. all those things to your best ability. And that's not, wasn't always the case. You know, I mean, how many hol family holidays did we have where, we took you out of the chair and, piggybacked you or carried you down the trail so we could see a waterfall or Yeah. Um, you know, all those sorts of things that people should be able to experience and don't. Mm mm Yeah. Just those small things. Well, I guess they're not small. They add up over time So I, I guess that changed. And I honestly, would I be aware of these things if you weren't in a wheelchair? I hope I would, but I don't know that I would. would. I see those, those barriers and, and those things that people with disabilities face every day. I don't know, but when you are my child. Dealing with those things is, yeah. That, that's what I found the most difficult. I found it difficult watching you endure a test after test of lumbar puncture of Botox injections, of, all sorts of scans and sitting with you always coming back normal. Yes. and that was a thing. And I guess in those early days, finding a diagnosis meant some sort of cure. To me. Yeah. Uh, ka and I mean, we are talking, what are we talking 23, 24 years ago? 24 years ago. Like Google was in its infancy. But I used to sit until all hours in the morning combing, trying to find something that the doctors couldn't find. You know, on the, worldwide web. Yep. That's right. On the old dial up. On those phone, I used to spend with very dodgy internet connection, but I spent countless hours trying to find something that no one else could find, because I probably thought I knew you better than anyone, so therefore I could find something that would cure you. Mm-hmm. As in, were you looking for a doctor or some sort of, name for what I had. Okay. Everything. Yeah. and we were always given advice and, and. And help from people Was always forthcoming, and 99.5% of it was, well-meaning, well thought, people who did alternative treatments that came out mm-hmm. To help you, spent time with you, be they emotional support, all those things. you know, there, there were always people that, said, had I given you too much Diet Coke, because of the aspart. I mean, all those sorts of, things where we were, yeah, sort of, this is what, and I mean, I had enough guilt. I didn't need to think, mind you, you didn't drink those sorts of things. But that's beside the point. 99 point. 5% of the people were coming from a good place. And it's like we've discussed about, how churches in town prayed for you and things like that. And while we are not religious to have those people use their prayers for you, and I think I'd said that to you, that their own prayers are so incredibly important to them. And to have them use those in the hope that it would make you better. It's really powerful for me feeling, isn't it? It's, yeah. Absolutely. Yeah. I'm also fairly pragmatic. Mm-hmm. We just get on and did what we had to do. And that's a hundred percent where my, I guess not dwelling kind of comes from, as a parent, you know, you've, you've kind of just, oh, this is so, this is what we have to do. Like, there's no point in dwelling on like, let's just kind of keep moving and you know, like you said, you don't really stop and reflect, but like that's a strong, point that you just made. That, that you do that that is probably where I kind of learn it from. Yeah, it possibly is. We didn't, we never, and I think I said we never took your hope, sat you in front of the telly and patted you off and said, there, there, this is your life. did just get on with it. And, and also being in the community, we were so school never treated you any different. In fact, a lot of times at school they expected more of you because they were aware that, um, you would need to be the absolute best you can to compete in a very uneven world. Mm-hmm. That's true. So those teachers that when you look back were well aware that, but there was always, people that, said you got special treatment and, I don't know whether maybe you did get special treatment, but you also got a lot of treatment that wasn't too special either along the way. I reckon I take it, it's like, you know, it's nice to have a blue bay to park in when it's Christmas time. Small price to pay for what you have to go through to get it. That's true. Yeah. You know, that's a good analogy. Definitely. You know, so, sorry, I'm just reading in my notes. Am I rambling? No, no, no, no, no. Definitely not. No, no. It's, no. Uh hmm. I'm trying to think how, what we can, what, how do you wanna round it out? Yeah. Yeah. So I was thinking, because, so we've mentioned, oh, well, I guess, um, so I guess, um, okay, sorry. Sorry. So Are there any key muments that you feel shaped us, in whatever area that is? Um, well, I, guess the fact, you have already mentioned one when I said to you like, don't tell me am I really disabled? Like disabled? Yeah. Like, I remember sitting on my floor in my room. yeah, you remembered that. Yeah. Yeah. I, I think those sorts of things, I, key muments that changed. it can be, it doesn't have to be changed. It can be like shaped as for the better. Um, like a defining kind of mument, I guess. And, well, I don't, I don't know that there's been defining muments. I think there's been muments along the way that changed us in how we view things. I don't think, um, I, I think we are who we are, but I think there's probably things that happened along the way that I changed your perspective on things make you look at things differently, and be that, having therapy. Doing those sorts of things, making decisions and being faced with decisions that you normally wouldn't have to make. Mm-hmm. So being faced with decisions about whether you had Botox, which in those days, Botox wasn't thing. It definitely wasn't a cosmetic thing. It was used purely and simply ma Well, mainly for children with cerebral palsy, to help, relax their muscles so they didn't toe walk, so it was used in their, their calves so that their heels would hit the ground and they could walk with a more normal gait. then they started using it for upper body. So you had it in your upper limbs to, stop to relax your arms because your hands were under your throat. you had it in your wrists and that to try and relax your hands. I did so much research about that, which when I look back now, seems so utterly ridiculous when we had it shoved in our faces and all sorts of places now. but 24 years ago it was basically creeping in. but to read it was botulism toxin, to read up about it. Not a lot was known. There was no long ge long term studies about it. So I did lots of research about that. So making decisions that were life altering for you were, were quite difficult. Mm-hmm. So they defined, so you having that then you having, operations on your legs too, where they shred the tendons and things like that to elong your muscles and they, and you had what they call serial casting. They put your feet in plaster. And we'd go home. You would live like that for five weeks, then we'd come back, they'd take them off, then they'd move your feet and try and set them in plaster again to try and make your feet flat, turn the right way. making those decisions, seeing you in plaster cars for months and months on end. and knowing that we had to make those decisions, you're only 11, they weren't decisions you could make, not informed, you could make them. Mm-hmm. But they wouldn't have been particularly informed, and knowing the consequences. So I guess those decisions were quite taxing. emotionally, they probably took the most for me. And seeing you go through that, seeing you in a chair. In plasters, transporting you, the extreme, hot weather because they were doing at the end of summer. You know, all those sorts of things. They probably play on my mind watching you go through those things more than, than, than anything. and we've certainly done the hard yards with, with ops and mm-hmm. And we'll get to, um, you know, incredibly life changing ops, but in the early days, having you had those procedures and seeing you go through all those tests and doing it so stoically, you were always a very, and I've always said, you're much braver than me, both physically and, Psychologically, I think sometimes you're much braver than me. but you were particularly brave when you were little and were going through those things. Yeah, and I guess it just comes back to, to the fact that I didn't think I was gonna be like that forever. So, you know, anything to kind of like, move along the process just to um, you know, get me back up on my feet again quicker. No, that's exactly right. You never saw it as a long term thing. And I think when you started to get into your teenage years, and the realization hit you and, and then teenage being of rebellious years anyway, you started not wanting to wear your orthotics on your feet, not starting to want, splints on your hands, not wanting to. do mundane exercises Made me seem more disabled than I already was. And you know, like teenagers very about appearance, I fitting in and, and having to go to those appointments and having those ugly, horrendous things on my feet or hands or whatever, it was just made me feel more not normal. Yeah. oh, look. and certain we had to make decisions based on, and I think as a, we've discussed it recently with, having skins with a, with a physio that was here and we discussed the fact of how we had the second skins that you had for a long time and mm-hmm. All the sorts of therapies that you went through. Um, and yeah, you just, just wanted to be normal and look like everyone else, and while you're in a chair, it's actually very difficult to do that. So what you could control were things like not having stupidly plasters on your feet and not having casts on your arms and mm-hmm. Um, special shoes and, all those sorts of things. So that, that certainly, we were well aware of that and Mm. And why wouldn't you, you know, and I mean all the, the therapies you were given looking back now and what they know if they could have made them part of your every day, so, which I think is why Matt was so good in the early days. He got you on a bike and tried to make you ride a bike, he. Made things engaging for you rather than just, you know, oh, let's move these fingers in and out, Sam, and, you know, it, it's like a therapy. Whereas, um, it, it was made more fun that way. Exactly. And, you know, even now, like, it's still the same though, going to Helen, like, when I go to the gym, it's, I get enjoyment out because it's, um, just what everyone else does, you know, it's nothing special. it's, working on my fitness, working on my endurance, which I love so much. So it's just, you know, even 20 odd years, 24 odd years later, I'm still enjoy the same kind of things. Absolutely. And I think that's, that's the thing. And I think with, um, with when dream Fit was around and with going skydiving and things like that, it was Making normal things that able-bodied people could do mm-hmm. Fit you. not saying, oh, you can't do them, or let's dumb them down and make them okay for people in the wheelchair, you know? Mm-hmm. All those things is, it's not dumbing down things for people with disabilities. Mm-hmm. It's making whatever it is you want to do, fit that person. Mm-hmm. You know? So your abs sailing in your chair was done where able bodied people were sailing. You were skydiving with people with, with your uncle, with people able-bodied people. Mm-hmm. But yeah. Made to fit you. Yeah. I think absolutely. I think that's where sometimes people with disabilities. What they come up against is that things are, either not accessible or they're dumbed down. So you do your boring old hand exercises instead of making it part of your gym routine, which is what I can do. But it's made to fit you and I think that's a really important thing for people with disabilities. I feel like that's a really good place to stop for this episode. Um, you know, we've covered a lot around my childhood and, you know, how that affected you and like your emotional turmoil in, in that aspect of things. And I guess a good question to wrap up, for you mum, um, when you look back on those early years now. What do you wish you could go back and tell yourself? Oh, goodness me, hit me with that one. I didn't know that was coming up. What, what would I tell myself? Something I told my mum when we'd been living in Perth for a while, and she was worried about us, and it's become my catch phrase. And if I could tell myself, and I still do, I will always be okay. And so will you. Mm-hmm. And, and that's, and I, I said it to my mum and I say it to you, I will always be okay. Doesn't matter how or what, or whether it's What, whatever capacity I will be. And I wish I could have known, because sometimes it was really overwhelming. Like you couldn't see the light. And as much as I said, we just did it day to day, yes we did. Mm-hmm. But, but some days it was incredibly, incredibly difficult. but yes, I'd tell myself that I'll always be okay. Mm-hmm. I'm pretty sure I said that in my last episode about, um, you know, about, you know, my future and that kind of thing. I'm pretty sure I. I even said that, 'cause you always said that to me, so that's funny. because we will be Exactly. We always have been and we always will be. Absolutely. Thank you so much for joining me on this episode, mum. I hope you'll jump on for the next couple and, um, yeah, I would be happy to. It's been, it, it's been interesting actually to chatting about it. things I hadn't thought about for a long time See you next time. Bye. And that's it for today's ride. Thanks for rolling with me. Make sure you're following A Wheelie Good Chat on Instagram for all the latest updates. And if you're loving the chat, don't forget to follow the podcast on your favourite streaming platform. Stay safe, everyone. I'll catch you next time.
Sam:want to start this episode of A Wheelie Good Chat by acknowledging that I'm recording on Wadjuk Noongar country. I pay my respects to the Elders past, present and emerging. Always was, Always will be Aboriginal land.
Sam:I'm your host, Sam Cole, and this is A Wheelie Good Chat where I get real about life with a disability and everything in between. Yes, even the not so PG stuff. I live with a condition called dystonia and I started this podcast to break stigma and share the things we as a society don't talk enough about.
Sam:Hey everyone, so I'm really looking forward to this episode today. If you've been listening for a while, you would know that I often mention my beautiful mum and I'm grateful to have her on this episode today. This episode today is going to start off about my diagnosis and the early days before I got sick, as I call it, and then how mum felt the responsibility of being a mother, then to a call it, and then how mum felt the responsibility of being a mother, then to a carer, and those kind of discussions we're going to have. So I really hope that it's going to be an insightful discussion for you and hello to my mum.
Di:Nice to finally be on here.
Sam:Yeah, thank you for joining me and being available in your busy schedule.
Di:Retired life I'm never busy anymore.
Sam:Yeah, so do you mind telling us a bit about yourself.
Di:A bit about myself. Okay, my name is Di and I was born and raised in Perth, and then I married Sam's dad and I went to live in Country Town, but actually on a farm in between two wheat belt towns where my son, J ake and Samantha, were born.
Sam:That's exposing me there, mum telling everyone my full name.
Di:And you're not even in trouble. Yeah, so from there, Jake and Sam are only 14 months apart and they started school and went to one of our local towns. Everything was normal. They did all the country town things. They swam lots of cousins, lots of extended family on their dad's side, lots of good people in their life, lots of people that cared for them and looked after them. And they went to that school until just after Sam's illness started.
Sam:I have mentioned in, I think maybe in the first episode or second episode, about how I remember getting sick, as I call it, you know, began, but I think it would be good from your perspective to hear how you remember it, if you're comfortable with that.
Di:That's fine. That's what I'm here as I guess my memory will differ somewhat from yours, as in timeline and whenever you grew up you went to swim club, you did netta, you ran in all the school carnivals and achieved at school no problems at all. I guess the first thing I noticed was one night you were very upset, you didn't look well, but like any other parent I guess, I gave you a Panadol and thought I'll see how you go in the morning. You were always a fairly placid child. You never got sick very often, but I wasn't overly concerned as well. I mean, in hindsight I wish I had have done more. But having talked to the doctor, the doctor said if I had have taken you in, he possibly just would have said give her some paracetamol and bring her back if you're not better. You insisted on going to school the next day.
Di:I worked in the pharmacy in Narembeen at that stage and it was a Wednesday and I had the day off and I insisted you stayed home. You were a little unwell, a bit teary, but you insisted you could go to school. You hopped on the school bus and I went about with my day as I normally did, having heard nothing from the school. But when you got off the school bus you were leaning very much to one side, almost dragging one leg and constantly drooling. No one at that particular school had advised me. Then, once children started getting home from school, I did have a call from a couple of parents from my friends that said that their children were upset because you were so upset at school.
Di:At this news I took you into town. Your auntie, my sister-in-law, did bown therapy, took you and you were only with her about 10 minutes and she said I should take you to the hospital, which we proceeded to do, took you to the hospital. The doctor didn't dismiss me, which I had already decided that I wouldn't be dismissed on this one. This was something that I knew wasn't right. I just felt it, and we were advised that we should come through to what was the Princess Margaret Hospital in Perth, but we couldn't get Royal Flying Doctor because you weren't considered an at-threat or emergency case. So, luckily for me, your nanna drove through with me to Perth and you just, laid on the back seat, went to PMH and they decided to admit you. After they'd done fruitless scans and all sorts of tests, you're admitted to intensive care where you remained for about four days. The doctor there, the pediatrician there, told me that the likelihood of us going home without ever knowing what was wrong with you. I knew there and then that nothing would ever be the same.
Di:It wasn't so much what he said, that looking for a diagnosis, which I guess in the very early days, a diagnosis was really important because it would have given us a way forward. But over the next three and a half four weeks that you're in PMH, and after numerous tests, you were tested for drugs, alcohol, chemical poisoning, because we were from a farm. We were questioned at length about our own drug use, about our home life, which is all quite understandable when you have children like that. You were tested for all those things. Then we got down to things like you were tested for tics made sure you didn't have tics, guillain-barre, which is usually an ascending paralysis.
Di:From there, after about a week you stopped talking completely. You couldn't eat. I guess If I couldn't talk, I couldn't eat. Well, no, and that's because of the tongue. You could swallow, you could do all that thing, but the tongue being such a large, intricate muscle you couldn't do that. You were given a nasal gastric tube which we had to feed you through and that was pretty intense. You were only, and have always been only a little tot. You were never a large child and you lost over 10% of your body weight. Wow, almost 20, like it was a good 15.
Sam:In the space of like. How quickly did I lose that?
Di:A few, a couple of weeks.
Sam:And I'm sure that like would have been scary enough seeing your eight-year-old daughter, you know, just just fading away physically, let alone the unknown of what actually happened or it was happening at that stage yeah, it was really difficult and I guess when you're in that moment and I guess that's with anything you just can only deal with what's there, and that I was.
Di:I was particularly concerned about your weight loss.
Di:But I was particularly concerned about your weight loss, but I was more concerned about the incredible deterioration in your physical ability and also your vocal ability, and it was after a short amount of time that your body started to for want of a better word deform a little, so your hands wouldn't open your elbow, your arm was right up under your chin. We had to be really careful you didn't choke yourself. But along with that I was dealing with the day-to-day. So I was dealing to make sure that you got nutrients, with your nasal gastric tube getting up during the night because you had a monitor to feed you. But at this stage also, I had Jake and we were also incredibly fortunate that we lived where we did. I had wonderful friends, great relationships with my extended family, my in-law family, and I was incredibly lucky to have such supportive friends who had Jake at a moment's notice, because it would have been very difficult for him at only you were eight, he had just turned 10, and all of a sudden, his life changed as well.
Sam:Oh, absolutely yeah, and I think I have mentioned that in one of my episodes. I always think about the sibling in a family that has a child that has a disability. Like you know, the sibling can often get forgotten or not asked about as often, so I think about my brother in that aspect.
Di:There's always been studies done about the siblings of children with needs outside, be they all sorts of needs and being in hospital for such an incredible amount of time and, yes, for the attention that was bestowed upon you, the gifts you were given, all those sorts of things would have been difficult for him.
Di:I mean you always look back.
Di:Did we do the right thing in keeping things as normal as could for him?
Di:You do the best you can at the time and I think there's always, you know, parent guilt and, in my case, mother guilt about what could have been done, but when you're in that time, all you're doing is trying to get through it, yeah for sure. So I think I had decided in hospital and I even said to one of your aunties our life as a family will never be the same, and I knew that. Then it was just a feeling. I had just something I knew, but through it all, you've never changed who you started out to be, and I knew that then it was just a feeling. I had just something I knew, but through it all, you've never changed who you started out to be. I think that's really important. We were never going to take you home and sit you in front of a television and that was just your life. There was always going to be advancements and we would always take those opportunities to provide, and we were very fortunate that we were in the position to do that.
Di:Absolutely yeah, that made a huge difference, and we have to be very grateful for that as well that we had the ability to afford you different sorts of therapies that didn't come through the public system. So while it wasn't always easy, and even financially sometimes, we certainly had that ability. I guess that is something important to kind of point out the ability to provide those things as much as you want to, and certainly there were things that were out of our reach. I'm not saying it was a bottomless pit, but we were certainly a little more advantaged in that way, and only financially. But also the fact that the support within small communities was allowed, as I had a beautiful friend who set up a roster of people that came and did therapy for you, which allowed me to, even if it was just sit in the sunshine or nick into town and do my shopping or and she set that up, and we had people not only that were my friends, but just people in the community that wanted to help. They came and worked with you and it was just interaction for you for an extra couple of hours a day. But we didn't have all my friends on that, I had my friends that were my support as well, and the good thing about that was we tried to keep it a bit separate so that you had the support for people, but we weren't, hopefully, overtaxing friendships and relationships at the same time.
Di:So I guess, from your stay in hospital we went back and we were also incredibly lucky with what we had in Perth too. My family was in Perth, so therefore we had people to stay with, people to visit you, people I could rely on. My niece lived here. People used to were close to you, so we would look. When I look back, as difficult they're the things I remember. I also remember how incredibly innocent and how you viewed the world in those days and in a lot of ways that was sort of difficult for me because I guess, being older, my view of the world was a little bit more jaded.
Di:This incredible optimism that this was just a bit of a hiccup in life and it was never going to be for you, it was never long term always thought oh, it's just like I'll wake up one day and it'll be all reverted back, yes, and while that was a really good, positive thing to carry through, it also, in later years, created I guess it created issues for you when you did realise that it wasn't going away, and particularly when you became a young teenager, when things didn't change, when you did realise you were disabled. Those were really emotionally taxing years yeah absolutely. But yeah, you did always have this incredible attitude, and do you know what? So did jake. He never treated you any different. He still just got on with things.
Di:His attitude to you never changed never, treated you special, I guess, and actually that was really nice still doesn't whether we never treated you any differently. It must have been incredibly difficult for him too as well.
Sam:Gosh, yeah, but if we ever asked him about it, he doesn't really give much, which is very much a male trait, just kind of being dismissive, which is understandable. But I guess he was no 10, so he probably doesn't really think much of it.
Di:He's just kind of like got on with it. Yeah, and his memories will be like yours.
Di:They're child memories, so that makes them a little different yeah, so he went back to the farm with a nasal gastric tube and we were also very fortunate at the time for the Allied Health Services there. But we had a wonderful and you would remember matt, a wonderful physio who there's so much you could say about him, but he got us and he got me and you through an awful lot of things. He was quite an amazing human in that time in our life and he'd done quite a bit of work at pmh too. I think he was a really good support from a professional point of view. And you couldn't attend school so I homeschooled you. Oh God, luckily at the time it was side, so isolated, distancing, and I wasn't required to have the outcomes and things that they require of parents at home school. But we did a lot and I kept you occupied for a few months until you finally went back to school. And when I went, back to school.
Sam:Was it like my choice? Was it your choice? Was it like the doctors? Kind of like, yeah, you're ready to go back.
Di:Like. It was a combination of everything and I think living on a farm was particularly isolating for you and you needed the stimulation of children and of learning. You were quite capable of learning. It was more the fact of when you went back to school we had to make sure that, well, you had to have an education assistant. That had to be put in place. All those things take time.
Di:Going back to school was a great thing, but it was also a really difficult time as well. With it came, naturally, came parents' bias and, I guess, discrimination. That's. Our first taste of discrimination would have been that year when you didn't receive a school report and it was put back on me that the principal there had said to me well, I should have followed up and made sure you got one. It was my first letter writing dipping my toe into the disability sector and what that actually meant for you moving forward. When that wasn't brought to a satisfactory result, then I made.
Di:Well, as a family, we made the decision to change you to Narrabeen School and I think we've discussed as a family is the fact that it's singly probably one of the best most yeah, probably one of the best decisions as a family we made. The school was accommodating. They gave you reports, but then they read the letter I wrote so they probably wouldn't have not given you a report. You had wonderful EAs but it changed everything. But we made that decision in consultation with school, with Jake, who was also going to change schools, of which he actually was really quite happy to move schools, I think because I was so good at sporting. Get in there. We're not an athletic family. We enjoy it and I think look, I don't know, but look, he was quite happy to go. We were particularly lucky. It really was a great school. It was a great school for you. It was a great school for Jake. It allowed me different friendships. I was on the school board. There was always everything was done with your disability in mind. So if they needed steps, they didn't get steps, they got ramps. It was never a question or never a debate. It's more like when can we get it Absolutely? And it was the same with school buses. You had teachers that would help you off the school bus. In other areas that wouldn't have happened. So we were particularly fortunate that we had all those things available to us.
Di:But your life understatement changed immeasurably, but you never dwelled on it. I guess that was the thing. And I can remember one of your EAs. You were doing things that had happened in your life that changed your life, and she said to you what do you think you've had that changed your life, sam? And you said I don't know. She just looked at you and blinked, thinking of all the change that you'd been through, and you go oh, I guess I had to change schools. So that was all you remember. You didn't say look, I'm in a wheelchair now. I used to be able to walk, I used to be able to run and swim, so I guess that's your take on it. You never dwelled on what had happened or where you'd come from. But no, that was a good decision, both from a schooling point of view and from a family point of view, we were very, very fortunate and still are very fortunate.
Sam:And also, I guess, like leading on from that, like your emotional world changed as a mother, as the carer I mean, you're still my mother but that kind of shift of ability, in a way.
Di:Yeah, I guess as parents we all think that as your children get older, they become more independent. They find their way in the world which you have, but differently. But it did bring a lot of challenges. You wouldn't stay with anyone. We had one person or two people you would stay with. You wouldn't go to the toilet for anyone else, you wouldn't let anyone else shower you, and a lot of those things were based because I always did it and for the fact that I wanted to protect you as much as I could, and that meant it being me, but it also meant I didn't go places the same way my friends were.
Di:I found it really hard to take time away. If I came to Perth for the day, it was always during school hours, so I was home for you, so I never went away. If there were weekends, I didn't go. I found it difficult to go back to work. Until you were a little bit older I'd always worked part-time before you got sick. So when you got sick I left my job. I went back every now and then, but you were always the priority and I guess that changed my life enormously. But I always felt it was certain times. I felt it was never about me, because ultimately it wasn't. It was always about you having the best life you could. There were lots of things I didn't do.
Sam:Is that because you felt you couldn't or was that because of my response to you not doing or not going somewhere?
Di:That's a question like which came first, the chicken or the egg, because I look back now and go did my need to make your life so good make you like that? Was I like that? Because you made me feel like that I don't know and do you know what? Now it's less important because, since you've been an adult and we got through your horrendous teenage years, which we'll talk about in the second part of this, because that's a whole story on another world.
Di:So I guess those things I don't reflect on them all that much because my life is very different. Now, yeah, my life's different to my friends, but it's not and I guess you've talked about this it's not worse, it's just different. It's what you and I do. Now I don't look at sometimes I do, I guess, look how my life could be different, that I could just jump in my car and drive to the farm, or I can't do that because there's organising for you. It's different for me. Wherever you and I go, we have to make sure it's accessible. But I think they're all logistic things. The hardest thing I found was the emotional difference. So having to watch your pain and anguish, realising that you were disabled and you begging me that you weren't always going to be like that. As a mother you sort of want to kiss and make it better and I knew I couldn't. That was, and sometimes is still, really really raw.
Di:There's not a day goes by that I wouldn't swap, that I wouldn't take what you have, and you know you have a less old. That's what I find really difficult. You feel, if you could, that you kind of would in my place, without a doubt. And I don't think there's many parents. You know people go. Why aren't you good? You know you look after Sam. Well, I don't think I am. You know you read of people in paper and you go oh, you know that's a really tough life and gee, they do that really tough. And then I realise that's us and I don't know what it is. I don't see it like that.
Di:I would never, and I'm not saying everyone is different and I'm not judging those people and we've talked about how some people's what tips some people, what doesn't tip other people, I guess, and what some people find difficult to manage.
Di:Yeah, that's right what you manage. And I see people on television programs and they're going. You know, this is my life and this is what I have to deal with and I find myself feeling sorry for them until I realise that's actually you and me or our family. That's what we do. We deal with that. We deal with other people's prejudice. We deal with our day-to-day changes of not being able to go to celebrate someone's party because you can't get in, of not being able to go somewhere because there's no accessible toilets.
Di:That is your day-to-day life. It's far less mine now than it used to be, but as a small child we could lift you, we could carry you. If we got a room that wasn't accessible, we could lift you into the shower. As you became an adult, those barriers were always there and still are there, you know, and if I could change one thing about when you were little, when you were growing up, it'd be for those barriers not to be there, for you to be able to access, participate, all those things to your best ability, and that wasn't always the case, you know. I mean, how many family holidays did we have where we took you out of the chair and piggybacked you or carried you down the trail so we could see a waterfall, or all those sorts of things that people should be able to experience, and don't Just those small things.
Sam:Well, I guess they're not small. They add up over time.
Di:So I guess that changed. And, honestly, would I be aware of these things if you weren't in a wheelchair? I hope I would, but I don't know that I would. Would I see those barriers and those things that people with disabilities face's what I found the most difficult. I found it difficult watching you endure test after test of lumbar punctures, of Botox injections, of all sorts of scans, and sitting with you, always coming back normal.
Di:Yes, and that was a thing, and I guess in those early days, finding a diagnosis meant some sort of cure to me. And I mean, we're talking, what are we talking? 23, 24 years ago. 24 years ago, like Google was in its infancy, but I used to sit up until all hours in the morning combing, trying to find something that the doctors couldn't find, you know, on a worldwide web Yep, that's right On the old dial-up. On those days I used to spend with very dodgy internet connection, but I spent countless hours trying to find something that no one else could find, because I probably thought I knew you better than anyone. So therefore, I could find something that would cure you.
Sam:As in. Were you looking for a doctor or some sort of name for what I had?
Di:Okay, yeah, and we were always given advice and help from people always forthcoming, and 99.5% of it was well-meaning, well-thought people who did alternative treatments, that came out to help you spend time with you, be they emotional support, all those things. You know. There were always people that said had I given you too much Diet Coke because of the aspartame? I mean all those sorts of things. Where we were, yeah, sort of this is what, and I mean I had enough guilt, I didn't need to think. Mind you, you didn't drink those sorts of things, but that's beside the point. 99.5% of the people were coming from a good place and it's like we've discussed about how churches in town prayed for you and things like that, and, while we're not religious, to have those people use their prayers for you and I think I'd say that to you that their own prayers are so incredibly important to them and to have them use those in the hope that it would make you better.
Sam:It's quite an incredible feeling, isn't it?
Di:Absolutely, and although we don't come from a religious place, those people, they're really special things to those people. I'm also really pragmatic. We just get on and did what we had to do.
Sam:And that's 100% where my I guess, not dwelling kind of comes from. As a parent, this is what we have to do, like there's no point in dwelling on, like let's just keep moving and you don't really stop and reflect. That's a strong point that you just made, that you do. That is probably where I kind of learned it from.
Di:It possibly is. We never and I think I said we never took you home, sat you in front of the telly and patted you on the head and said, there, there, this is your life, did just get on with it and also, being in the community we were so school never treated you any different. In fact, a lot of times at school they expected more of you because they were aware that you would need to be the absolute best you can to eat in a very uneven world. There's teachers that, when you look back, were well aware, but there was always people that said you got special treatment. And I don't know whether maybe you did get special treatment, but you also got a lot of treatment that wasn't too special either. I reckon I take it. It's like you know, it's nice to have a Blue Bay to park in when it's Christmas time. Small price to pay for what you have to go through to get it.
Sam:That's true, it's a good analogy. Definitely, are there any key moments that you feel shaped us, in whatever area? That is Well, I guess, the fact that you have already mentioned one when I said to you don't tell me, am I really disabled? Yeah, I remember sitting on my floor in my room yeah, you remember that.
Di:Yeah, yeah. I think those sorts of things are key moments that change it can be.
Sam:It doesn't have to be changes. It can be like shaped as for the better, like a defining kind of moment, I guess I don't know that there's been defining moments.
Di:I think there's been moments along the way that changed us in how we view things. I think we are who we are, but I think there's probably things that happened along the way that change your perspective on things, make you look at things differently, and be that having therapy, doing those sorts of things, making decisions and being faced with decisions that you normally wouldn't have to make. So being faced with decisions about whether you had Botox, which in those days Botox wasn't a thing. It definitely wasn't a cosmetic thing. It was used mainly for children with cerebral palsy to help relax their muscles so they didn't toe walk. So it was used in their calves so that their heels would hit the ground and they could walk with a more normal gait. Then they started using it for upper body. So you had it in your upper limbs to stop to relax your arms because your hands were under your throat. You had it in your upper limbs to stop to relax your arms because your hands were under your throat. You had it in your wrists and that to try and relax your hands.
Di:I did so much research about that which, when I look back now, seems so utterly ridiculous when we have it shoved in our faces and all sorts of places now, but 24 years ago it was basically creeping in but to read it was botulism toxin. To read up about it, not a lot was known. There was no long-term studies about it. So I did lots of research about that. So making decisions that were life-altering for you were quite difficult. So they defined so you having that, then you having operations on your legs to where they shred the tendons and things like that to elongate your muscles, and they and you had what they call serial casting. They put your feet in plaster and we'd go home. You would live like that for five weeks. Then we'd come back, they'd take them off, then they'd move your feet and try and set them in plaster again to try and make your feet flat turn the right way. Making those decisions, seeing you in plaster casts for months and months on end and knowing that we had to make those decisions You're only 11.
Di:They weren't decisions you could make, not informed decisions you could make, but they wouldn't have been particularly informed and knowing the consequences. So I guess those decisions were quite taxing emotionally. They probably took the most for me. And seeing you go through that, seeing you in a chair in plasters, transporting you, extreme hot weather because they were doing it at the end of summer, they probably play on my mind. Watching you go through those things more than anything and we've certainly done the hard yards with ops in the early days having you had those procedures and seeing you go through all those tests and doing it so stoically. You were always a very and I've always said you're much braver than me, both physically and psychologically. I think sometimes you're much braver than me.
Sam:But you were particularly brave when you were little and were going through those things, yeah, and I guess it just comes back to the fact that I didn't think I was going to be like that forever. So you know anything to kind of like move along the process, just to you know get me back up on my feet again quicker.
Di:No, it's exactly right. You never saw it as a long-term thing and I think when you started to get into your teenage years and the realisation hit you and then teenage being, of rebellious years anyway you started not wanting to wear your orthotics on your feet, not starting to want splints on your hands, not wanting to do mundane exercises.
Di:It made me seem more disabled than I already was and you know, like teenagers it's very about appearance and my feeling in and having to go to those appointments and having ugly hair and things on my feet or hands or whatever, it just made me feel more not normal yeah, oh, look, and certainly we had to make decisions based on and I think, as a we've discussed it recently with having skins with a physio that was here and we discussed the fact of how we had the second skins that you had for a long time and all the sorts of therapies that you went through.
Di:And, yeah, you just wanted to be normal and look like everyone else, and while you're in a chair, it's actually very difficult to do that. So what you could control were things like not having stupid big plasters on your feet, not having casts on your arms and special shoes and all those sorts of things, so that certainly we were well aware of that. And why wouldn't you? You know, and I mean all the therapies you were given, looking back now and what they know, if they could have made them part of your every day, which I think is why Matt was so good. When we had a physio in the early days. He got you on a bike and tried to make you ride a bike. He made things engaging for you rather than just you know, oh, let's move the fingers in and out sam, whereas it was made more fun that way exactly.
Sam:And you know, even now it's still the same, though, going to helen, like when I go to the gym, I get enjoyment out because it's just what everyone else does. You know, it's nothing special. It's working on my fitness, working on my endurance, which I love so much. So it's just. You know, even 20 odd years, 24 odd years later, I'm still enjoying the same kind of things Absolutely.
Di:And I think when DreamFit was around and with going skydiving and things like that, it was making normal things that able-bodied people could do fit you, not saying, oh, you can't do them, or let's dumb them down and make them okay for people in the wheelchair, all those things. It's not dumbing down things for people with disabilities, it's making whatever it is you want to do fit that person. So your abseiling in your chair was done where able-bodied people were abseiling. You were skydiving with your uncle, with able-bodied people made to fit you.
Di:And I think that's where sometimes people with disabilities what they come up against is that things are either not accessible or they're dumbed down, so you do your boring old hand exercises instead of making it part of your gym routine, which is what I can do, but it's made to fit you, and I think that's a really important thing for people with disabilities.
Sam:I feel like that's a really good place to stop for this episode. You know we've covered a lot around my childhood and how that affected you and your emotional turmoil in that aspect of things. I guess a good question to wrap up for you when you look back on those early years now, what do you wish you could go back and tell yourself?
Di:Oh goodness me, Hit me with that one. I didn't know that was coming up. What would I tell myself? Something I told my mum when we'd been living in Perth for a while and she was worried about us, and it's become my catchphrase. And if I could tell myself and I still do I will always be okay, and so will you. I said it to my mum and I say it to you I will always be okay. Doesn't matter how or what or whether it's whatever capacity, I will be and I wish I could have known, because sometimes it was really overwhelming.
Sam:Like you couldn't see the light.
Di:And as much as I said, we just did it day to day. Yes, we did, but some days it was incredibly, incredibly difficult. But, yes, I tell myself that I'll always be okay.
Sam:I'm pretty sure I said that in my last episode about my future and that kind of thing. I'm pretty sure I even said that because you said that to me.
Di:So it's funny Because we will be. We always have been and we always will be.
Sam:Absolutely Thank you so much for joining me on this episode, mum. I hope you'll jump on for the next couple and yeah, I would be happy to.
Di:It's been interesting actually chatting about it, things I haven't thought about for a long time.
Sam:See you next time Bye, and that's it for today's ride. Thanks for rolling with me. Make sure you're following A Wheelie Good Chat on Instagram for all the latest updates and, if you're loving the chat, don't forget to follow the podcast on your favourite streaming platform. Stay safe, everyone. I'll catch you later.
