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
34. When the Future Feels Fragile
In this vulnerable episode, I open up about the emotional and practical challenges of ageing with a disability. From fears of physical decline and lack of medical answers, to the deep anxiety of one day losing my mum, who has been my primary caregiver since I was eight, this episode explores what it means to age when your independence is so closely tied to someone else’s care.
I talk about the guilt, grief and hope that come with future planning, and my desire for sustainable support that doesn’t sacrifice freedom or connection. Ageing with a disability is confronting, but it’s also a privilege, and I’m doing my best to honour that.
Thanks so much for listening to A Wheelie Good Chat! Your support means the world.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
💬 Leave a review on Apple Podcasts
Click here to leave a review
I want to start this episode of A Really 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. I'm your host, sam Cole, and this is A Really 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 before we get into today's episode, I do just want to say thank you to everyone who's listened to the previous episode with Soph. I got some really great feedback, which is so lovely to hear. If you were one of those people who listened and gave you feedback, thank you so much. Or if you didn't give me feedback but you still listened, thank you also. But moving on to today's episode, I thought today's topic would be quite an informative one and also for me to reflect on some things that maybe you know I haven't considered. I mean, I don't know about for you guys, but when I'm talking, other things kind of come up for me. I'm like oh yeah, I didn't consider that. So sometimes having this discussion can really help me think about future things that I may need to consider for myself, or just maybe, if you're listening, there are things that you may need to consider for yourself, in whatever aspect that may be. So this episode is going to be around getting older, but not the superficial stuff, about the grey hairs, the wrinkles and that side of things. It's going to be around things such as my future and how that's going to look. My future and how that's going to look, things that I need to consider as I'm getting older and things that are actually quite daunting thoughts to actually have. For me, this episode is probably going to be quite emotionally taxing. So I hope I can compose myself through this episode. There's quite a few things I would like to say, so hopefully I get my message across and I can say what I want to say in within this episode and not go oh damn. I wish I said that.
Speaker 1:I guess the outline of this episode is just kind of reflecting of things I need to consider as I get older. You know my body physically, what supports I might need as I grow older, as well as what ageing means when my mum is my main support and you know she's not getting any younger and that is just so scary to have to think about that sort of thing with my mum and what my future looks like when I can't just assume you know I'll figure out later, kind of thing. So in regards to my body, physically I feel I am the strongest I've been in my life, like it's my adult life, and that is an amazing feeling, you know, being stronger, being working on my fitness. I love doing that and it brings me joy. It's just such a positive thing for me to do. I suppose that that's something that is great to be able to say aloud that I work on my fitness and I can see the the impact and the results from that, from working out consistently over I think it's four or five years now and be able to see the results in not only physically but also my endurance, my stamina, the fact that I'm not in any pain. I just am so grateful that I've never experienced pain, because that will be very debilitating. Having pain always with you, yeah.
Speaker 1:So the thought of getting older and my body changing is a terrifying thought for me. I can work on my fitness. I can work on my stamina, my endurance and all this kind of thing, but if I can't keep up with, well, not keep up, that's probably not the right word at all. But for example, say, I guess the chances of me having arthritis is very high, just the way that my joints and my bones are positioned. I would be very surprised if I didn't get it. And arthritis can really affect people's lives and it can really be very uncomfortable for some people. And just the thought of, like me, getting older and my body just kind of I'm not saying giving up on me, absolutely not but just having these aging aspects is really scary and it's really something that I don't like to think about. Because who wants to think about getting older? No one wants to think about getting older. It's a terrifying, terrifying thought, and especially when you're so unsure about how your body is going to go when you get older. You know, because as we get older, our body does change and we do have more aches and pains and you know we're not as strong as we once were when we were younger. So adding that element of a muscular condition is actually terrifying. I'm not too sure how to manage that side of it within myself, but I think it's just important for me just to look after myself and just kind of do what I'm doing and being that this journey is so diverse and so broad and so unique to each individual. I guess they they as being the health professionals wouldn't be able to confidently say that this is what the future is going to hold, this is what your body is going to be as you get older. I mean, I'm sure they can say there's a chance where you might age a lot faster than my able-bodied friends. No, that's scary.
Speaker 1:So, as most of you know, my mum has been my main support, my primary caregiver, for my whole life. You know I was eight years old when I was the last time that I walked, and I guess before that, you know, I was still needing mum to help me with some things, you know, washing my hair, because I had really long hair, and that kind of thing. So mum has always been my number one person and I um, and oh my god, what the heck. Oh, yeah, and the actual thought of her, you know not. Oh my God, yeah. So mum has done so much for me and put up with so much from me.
Speaker 1:I'm sure absolutely none of us want to lose people who are closest. None of us want to lose people who are so important in their lives. But there's this element where I live with my mum. I see it every day and the thought that she's not going to be here, the thought that my mum isn't going to be in my life, isn't actually the most terrifying thought in the whole wide world. You know, ever since, like I was saying, ever since I was a little kid, my mum has done so much for me and sometimes I do take that love and support and that just for granted, and I'm sure no one likes to talk about death or, like I was saying, the close ones passing away. It hits so much harder when that person lives with you. That person is your everything. That person does so much for you, that person is your biggest supporter.
Speaker 1:It's so hard to fathom how I'm going to be okay, like I will always be okay, but it would definitely take some adjusting too, because I'm sure everyone who has that parent who they're really close with, and you want to give them the whole world, you want to just scream at how much they do for you and how much you appreciate them, but that doesn't even seem like enough, and yeah, I don't know what I'm trying to say, but I guess the fact that my mum is getting older, she doesn't act old, she doesn't dress old because of me, no, but the thought of mum not being here is an actually terrifying thought. I'm sure when mum's 80 she doesn't want to be caring for me and I'm sure she wouldn't be enjoying her life and not having to worry about me. Yeah, so mum does so much for me that it is hard to, I guess, have to even think about or consider or plan for how I'm going to be okay without mum, and that thought is just so. Oh my God, I don't even know how to put it into words, but I just don't want to lose my mum. Like nobody wants to lose their mum I'm not saying everybody wants to lose a parent who they're close to. So my mum has always done so much for me and I'm sure she will continue to do so much for me. But even from you know, when she's got a sore back or when she's sick and has a really bad headache or something like that, I think not.
Speaker 1:I think I know that I get really frustrated with myself by the fact that mum can't just rest. She can't just lie in bed, she can't just take a day off just to rest her body or whatever she needs to do to get better, because she well, I don't think she needs it, she wants to. She always says she wants to look after me. So, yeah, I feel guilty for not being able to give her the time, the space that she needs to get better, recuperate. And that's hard, that is really hard. And you know, I've got amazing support Don't get me wrong, amazing friends, don't get me wrong, but it's just something about the way that mum does things and does it without even thinking. You know, I don't have to ask you, just know how to do it. I guess that it's just being comfortable with someone, you know.
Speaker 1:Yeah, I think the frustration, the guilt is just something that I suppose has always been there. However, in the past few years, I really feel it has become more of a concerning thought, definitely a lot stronger, a lot more prevalent. The fear of mum not being here is something that I will have to deal with. You know there's no avoiding death in this life. Unfortunately, even my dog, you know. That's for another episode. Guys, let's be real. Death is inevitable for all of us.
Speaker 1:I don't know what else to say about that, except for losing mum is such a terrifying, terrifying thought. I am just so scared of losing my mum and not being prepared for it and saying things like, oh, I've got time, I'm not worried about it. Yet the time has come for when I need to, or when I should have been more organised about organising support, organising different aspects of my life to make myself comfortable and not have to do it when mum is gone, or something like that. That's just a thought that I'm clearly still working through and it's very raw and it's an absolute petrifying thought for me and there are different fear, frustration, guilt, that really kind of encompass that. And then you know, I've only got one brother. I don't want to always.
Speaker 1:This is going to sound so lame, you know, when there's always that one person in the family who doesn't have any kids, who's still single and just kind of is a bit of a what's the word? A bit of a leech, a person who just feels're they're welcome to come around and they just pop by and then they stay for five hours. But in that five hours you could have been doing a lot of houseworks. You could have been, you know, doing a lot more productive time rather than feeling like you had to entertain the single sibling, oh my god. And they always turn up at Christmas, they always turn up on birthdays. That's what I feel like I'm going to be like with my brother, so, and poor Christy is just going to have to put up with me now as well. But you know, I don't want to have to burden. Oh my God, why am I crying again? And I would hate to think that I am burdening their family. I guess that they will be the one when mum goes. Jake will be my only immediate family. I'm sure he doesn't want me around all the time and he doesn't want to see me for every Christmas, every birthday for my little niece and nephew. So I hope I kind of understood where I'm coming from in that aspect about my family.
Speaker 1:Planning for the future is overwhelming sometimes. You know, for the best of us, and being that I am a type A personality, very much so it's really difficult to plan for something like this and I'm being very much an ostrich with my head in the sand. I think that's a saying with this kind of thing. And yeah, so when I talk about my future, I'm not talking about my career, I'm not talking about my love life. I'm talking about, you know, my friendships. It's more about access, my care, my physical support that I would need, and that's absolutely terrifying because, you know, I, like I said before, I don't want to be a burden to anyone. I don't want to just be put into a home and then will not be put into a home. That can happen, you know if. If the main care is gone or there's someone around to to be support, then, then I would be well, I presume so. I mean, that's very presumptuous of me, but I'm just presuming that what would happen? When I say a home, I mean like when you've got aged care and there's all these little rooms coming off there. I guess that would be the same for a disability. I'm actually not 100% sure, so don't believe what I'm saying on that part.
Speaker 1:My dream is to be independent. Have sustainable supports is very important to me and continue having those relationships with my support and not because I guess, as I'm getting older, you know, when I hit my mid-40s will I still be getting like young uni students supporting me. Is that fair on me? Is that fair on them? I got all these questions when I live. You know I probably should be living in Perth. I would love to live overseas, experience that life.
Speaker 1:I think I've said that on a previous episode, that it's just not realistic for me. And who will be there living with me in Perth? Well, I honestly kind of think who would be living with me, because would it be like someone to support me, but also a friend. I wouldn't mind that, but that just seems a bit unnecessary, wouldn't it? Because I love my own space, so important to be able to be on your own and have that time alone and be able to do what you want to do in that time and not having someone always there and always being like you have to talk to them or being like you have to entertain them probably better way of saying it. But my fears around being independent is, like this becomes so isolated that I don't see anyone. That is terrifying. That is absolutely terrifying for me because I'm the people person you you know. Of course I love, like the low-key weekends every now and then, but, like, after I've had my low-key weekend, I love to be out and about during the week, if that makes sense.
Speaker 1:And then fears around my sustainable supports. I guess I kind of did say that before about. Am I going to be, say, 45 and still have like young 20-year-olds? Because that's not fair on me and that's not fair on them to have to be talking to an old 45-year-old. 45 is not old. I'm joking, guys, relax. I guess, like some of my beautiful, beautiful besties, are early 20s and that's so fine because you know your 30s are your new 20s guys.
Speaker 1:And the fear where I'll be living well, I don't really feel like that's a fear for mine because I know I'll always have a roof over my head because mum has made that very clear for me who will be living with me, my head, because mum has made that very clear for me who will be living with me. That is a fear because I don't want 24-hour care. I mean, maybe I might need it in my mid-40s who knows? Honestly. But there's a fear because, like I was saying before, I love my own time and it's just so important not to have someone just always there in this space. I know I will be okay in my future, you know. Of course there's gonna be a time where I'm like, oh my god, how am I going to get through without my mum, but I'm always going to be okay. So, yes, just remember, you're always going to be okay.
Speaker 1:Probably wasn't a good idea to record this like three days before my period, but anyway, here we are With planning for my future. It's clear that I don't have all the answers, but I'm certainly starting to think about the questions that I need to consider for my future. I'm still so proud of how far I've come, I feel. When I started my podcast, I never thought I would be talking about this kind of stuff so openly and being so vulnerable about my future, and how scary it is for me to have to consider all these different things. I feel like that just shows how far I've come. You know, not only on the podcast but also in my personal life, and I feel like it's important you know, even for for you as a listener to, to remember that you've gone through so much already.
Speaker 1:Unfortunately, we all have experienced hard times. You know, and that's you don't compare a hard time your hard time is. You know, and that's you don't compare a hard time, your hard time is your hard time and you've clearly come out of that difficult time. And if you're currently in that hard time, believe me. I know you'll get out of that hard time and keep getting up each morning and just be there, be there for yourself. You know, I know that's easier said than done and I can totally respect that. It's easier said than done. I just hope that that if you are having a difficult time, in whatever aspect that is, I hope you know that that you've got this and it just shows, shows you, that you can do it, that you can do whatever you put your mind to to get out of that difficult time that you were in your life.
Speaker 1:And that's so important to remember the fact that I've built a life for myself. You know I'm not sitting at home twiddling my thumbs, relying on my mum to entertain me Absolutely not. I am, I guess, hustling in a way to make the best life that I can. You know, every now and then I go through periods where I'm like, no, I'm not looking for social work jobs, it's all too hard. But I know I'll find a job out there that will be the most beautiful organisation and I will thrive in that environment. I know it may take time but I know I will find that organisation and use my degree and I think for all of us, ageing is super confronting, but it's also so important, not only for me to remember, but also for yourself, that it's a privilege to get older, because some people never get the opportunity to grow older. I may not sound or act or, you know, have the typical and air quotes 33-year-old life.
Speaker 1:It's not easy talking about the future when it feels so uncertain for myself, but I know this. I've made it through every hard season so far. I'll figure out the next ones too, even if I'm scared, frustrated and sad and all these other emotions I've spoken about. Yeah, so within this episode, I've spoken about, you know, my physical side and how there's this uncertainty of what, physically, my body is going to be like in another 10, 20 odd years and that's concerning for me. And then I spoke about my mom and her, her role in my life and how absolutely petrifying that is to think about losing her and how forever grateful, you know, I am for her being by my side through it all. And then just exploring and thinking about just things I need to consider about support and where I'll be living and things I need to consider for the future Having sustainable supports in place and how that will look and just my fears.
Speaker 1:There's a lot of emotion in this one, the concern around it all, and just trying to be, I guess, open and honest. Hopefully I encapsulated it well and really kind of made it really clear about the concerns and the things that I need to consider in my future. Yeah, so getting older for me it isn't a crisis, it's just it's a complex issue that I guess I need to kind of start thinking about. What I guess I have been thinking about, I guess put things into place, you know, for when tragedy does happen, which I hope is a long, long, long time away, and I'm sure you can hear throughout this episode talking about certain things, like my mum and my brother and that sort of things you know my family brings up sadness.
Speaker 1:I feel as though I reflected quite a lot throughout this episode and, yeah, so, definitely a variety of emotions within this episode and, yeah, I just want to finish off by saying, if you've been feeling any of this too, you know about getting older and things you need to consider, put in place, let you know and say you're not alone and a good, I guess, good kind of reminder to put in place if you haven't done a will before and you have been putting it off or haven't even considered it. This is just a friendly little reminder to get the will finished, because we have no idea what the future is going to be like. You know, we don't even know what tomorrow is going to be like. You know, we can be as safe as we want to be and then just something tragic might happen. So I hope everyone does the wheel.
Speaker 1:I didn't realize that as a sole person, that it would go to my parents, and I was like I don't want that. I want it to go to my niece and nephew. So I've got to do mine as well. But that's all. Thank you so much. Okay, bye everyone, and that's it for today's ride. Thanks for rolling with me. Make sure you're following a really 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 favorite streaming platform. Stay safe, everyone. I'll catch you next time.
