Transcript
Sophie Shephard: Hi, everyone, and welcome back to Beyond Pain and Fatigue. My name's Sophie Shephard and with me I have Oliver Crossley, and also very excited to welcome our special guest for today, Kylee Black. um It's my pleasure to welcome Kylee onto our podcast as our very first guest
Sophie Shephard: dynamic international speaker who shares her lived experience and insights into disability advocacy, inclusion, and social change at conferences, events, and in podcasts. Guided by the values in power, encourage, educate, equip, she fosters environments where everyone can realize their potential. As the founder of Kylie & Co and a key collaborator in the Clipboard Initiative, she's spearheading the transformation of the future of work, leadership, and inclusion.
Sophie Shephard: Kylie empowers individuals with complex needs to build confidence, develop leadership skills, and unlock their potential through readiness coaching, pathway preparation, and pre -employment support. Living with Erlers -Danlos syndrome and a complex disability herself, Kylie's journey reflects resilience, determination, vision, and power of community.
Sophie Shephard: From creating inclusive spaces such as the Soul Lounge at Festival One and disabled business owners, she has consistently championed inclusion and empowerment. Through her leadership at Kylie and Colin Clipboard, empowerment initiatives and their extensive network, Kylie proves that reframing circumstances and building on what is within our reach makes anything possible. She's flipping the script on what it means to live fully, challenging traditional ideas of success and showing that we're all capable of leading meaningful, impactful lives.
Sophie Shephard: Kylie's advocacy extends to working closely with medical professionals as a patient and consumer expert, teaching and training on disability inclusion. Additionally, Kylie consults with organisations and initiatives to improve accessibility, ensuring that everyone can participate fully in society. Her work is rooted in lived experience, teamwork and connection.
Sophie Shephard: And I had the privilege of meeting Kylie as part of our preparation for the upcoming global learning conference for the Ehlers Danlos Society, um which is being held in Brisbane in February. And um honestly, just feel so privileged to have been able to meet you Kylie, because it's been wonderful to hear your passion and your story. And I'm so looking forward to hearing you speak at the EDS conference too. um And look we're just thrilled to have you here to really share your story and your insights. So, so welcome.
Kylee Black: Thank you. It's a joy, privilege, honor and blessing, truly.
Sophie Shephard: Oh, thank you so
Sophie Shephard: know I've sort of shared a bit about your background um here, but I guess, do you mind starting by telling us a little bit more about yourself, who you are and where you're from?
Kylee Black: Yeah, so I'm based in New Zealand. As you can tell, I got the Kiwi accent down pat. um
Kylee Black: um ah So I've been living in Kirikiri or Hamilton for the last, ah since 2012 actually now.
Kylee Black: um But I grew up in Walkworth, which is north of Auckland. I'm originally from the Hawkes Bay. um All of my family originates there. I haven't lived there myself, ah but every holidays, every um time we went away, and we were always going home to Hawkes Bay, where the family, where whānau was. So to me, home's always been Hawkes Bay.
Kylee Black: um But home for me as an adult now is also very strongly rooted here in the Waikato. So yeah, um I lived in Australia for a year, um ah so Australia is very close to my heart also.
Kylee Black: um I am a person with a disability. um I am a whanau family. Whanau is family in New Zealand. So I'm a family member of ah someone with a disability um and I love life and it is brutal and beautiful um all in the same hand at the same time.
Kylee Black: um Yeah. ah There's lots, lots of things I love and do, and set my heart on fire,
Ollie: Kylie, this this is a question that's just come to mind that I know we we haven't chatted about, but you're um using a lot of lovely Maori words there,
Sophie Shephard: lovely, I think, actually to hear you using that language. I think it's something we're seeing increasingly in Australia, but I don't think anywhere near enough still.
Sophie Shephard: And so it's always lovely to. listen to our friends across the ditch and to be you know hearing that come through so much. That was a really beautiful thing to witness when we went to go visit in New Zealand was to see how much that was really honored over there and and to see the culture so embedded within you know everything that you
Ollie: Yeah.
Kylee Black: I think for me, um language is really important, right?
Ollie: yeah
Kylee Black: um And so is honouring Te Titiri and the treaty and the people. And I'm really proud of that part of our heritage and our culture.
Kylee Black: And it's just as much a part for me of my culture and my identity here as a New Zealander. um As it is any other part of me, I think.
Ollie: know you've had such a ah rich and challenging journey.
Kylee Black: Mm.
Ollie: If you could tell us more about how it began for you.
Kylee Black: Mm. and Absolutely.
Sophie Shephard: Yeah,
Kylee Black: um So, honestly, if I look at today um and where we are today, I'm just like, oh man, how different my world could have been, you know?
Sophie Shephard: absolutely.
Ollie: Yeah.
Kylee Black: um I wasn't diagnosed with Ehlers -Danlos syndrome until I was in my mid -20s.
Sophie Shephard: Hmm.
Kylee Black: But that didn't mean we didn't know there was something happening well before that. um So I went through my 10 years um always being told, um even from medical professionals, your body doesn't work like other bodies do, it doesn't function like other bodies do, we don't know why. ah We've got to wait for medical science to catch up. They often talked about there's too many differentiential do many different diagnoses to just be random. There's something that has to be pulling this together, but we just don't have the research and science behind us to work that out. Hopefully in time that'll catch up. They also said um maybe as it goes and things progress, maybe they get better, maybe they get worse, that sir it'll start to show itself as to actually what's really underlying everything.
Kylee Black: um But today I don't think we would have any trouble actually putting the pieces together. um Even when I was diagnosed with Ehlers -Danlos syndrome, I actually didn't understand what that meant or the implications of it. um But if we backtrack from that point and now go back to um even infancy, I ah was always really flexible always ah really mobile, um but
Kylee Black: High energy, no endurance. um Good fitness, but no capacity to carry anything fully out. I'd fatigue really quickly. um I couldn't keep up with other kids. I was breaking bones all the time. I was falling over all the time. I used to get bullied a lot because how do you trip over a flat pathway, Kylie?
Kylee Black: Seriously, there's not even a curb in the pathway that you tripped over, Adam. um So always just being told you're the clumsy kid. um But also, and it's really interesting looking back now, I remember, and I just thought it was normal.
Kylee Black: um So I don't know if you guys have the decking in Australia or in other parts of the world where it's got the ribs in it, you know, like it has the ribbing in it.
Sophie Shephard: Yeah, yep.
Ollie: Yeah.
Kylee Black: and um and so at school we had the steps, big fat steps and it had the ribbing in it and they would have us um eat our lunch on there so you'd sit on your knees and have your food on the one above or they'd line you up and you'd sit on your knees for different activities. um Well I've still got the scars on my knees so just being on my knees with my weight through would actually cut the skin on my knees like my skin would cut through with each line um and I always used to think that was funny but I'd have deep ingrained um ingrains in my skin and they would last there like all day through till the next day and then yeah I'd often end up with cuts there and never really yeah just never understood um didn't heal well
Kylee Black: um I had my appendix out when I was 13 and I had an open appendix operation. Six weeks after the operation my wound reopened um because the dissolvable stitches dissolved before the wound had healed.
Kylee Black: You know, um I was diagnosed with a hearing impairment when I was 15, glasses 15, scoliosis and they wanted to do surgery at 16, blood disorder.
Ollie: Yeah.
Kylee Black: um There were lots of like things that um just didn't quite, you know, like, yeah. But also back then, I didn't also know that it wasn't normal to be in pain.
Kylee Black: um Because how do you as a young person when you're already being bullied and or mocked or gone oh come on just like get on with it or you know um or what have you done now like or you know or that somehow it was my fault that my wound didn't heal or that it took me so much longer to recover
Sophie Shephard: Mm.
Kylee Black: um or you know um when I hit puberty I started having a lot of issues with um my period and with stomach and gut pain and episodes of relentless vomiting and um my stomach blowing up and really severe gut pain that would lay me in hospital and um you know and and cycles of that but there was never a real full understanding of why. All the tests showed up, you know, with different inflammatory markers, but nothing that you could really just go, oh, like, yeah.
Kylee Black: So I thought, and it's funny, I look at it today and I i giggle to myself, but like I literally thought I was a freak. I didn't understand, I thought someone could only have one diagnosis. um I didn't understand that people had more than one thing or could have more than one thing going on. um And when you don't have answers and you're just told your body's different, it doesn't function like other bodies does, I added a lot of hormonal issues, a lot of weight challenges, um and a lot of um food intolerances, but could never just really pin things together.
Sophie Shephard: Yeah, absolutely. And thank you for sharing that because I think it it really speaks to just the, I guess the complexity, right? of of Of all of the different symptoms that from my experience as a clinician working with people who have EDS and and other sort of complex disability, this is so often the case, right? People have all of these different systemic things going on. You know, it's not just pain, it's lots of other body systems getting involved. and if If that's all you've known, like thats you just kind of think it's normal. and I think like you have no other frame of reference. and um I think particularly with things like EDS, where there is often a bit of a genetic component as well, that sometimes it runs in families. so You're like, well, this is normal because like my parents have the same thing and like you know where you know it's normal for us. and and so
Sophie Shephard: you know, we kind of lose that. um I'm interested to hear a little bit more about your experiences um as a child and and sort of in your adolescent years too, because you mentioned that you were quite active. So I guess even though you were having a lot of these symptoms and these sort of medical concerns, what what did just life generally look like for you? You know, what what sort of hobbies or, you know, how would you sort of spend your time as a kid?
Kylee Black: That's a great question. um Actually, it's it's really ironic, right? but I was the first diagnosed in my family. But, you know, my nana had a lot of things going on. I wasn't diagnosed until after she passed away. um But
Kylee Black: my two childhood best friends have also both gone on to be diagnosed with Ehlers -Danlos syndrome.
Kylee Black: And so we used to have like party trick, like we did all the things and the tests, cause you just didn't know, you know? And people used to think it was funny, but you know, I remember one of my really close friends could maneuver her body through a chatter ring by being able to like move joints around. um But yeah,
Kylee Black: it's um yeah it's an It's an interesting journey. I i loved dance. um I i ah loved reading.
Kylee Black: I loved schoolwork um and threw myself into a lot of that.
Sophie Shephard: yeah lovely.
Kylee Black: um I hated cross country. um I could keep up to start with the first like 100 maybe 150 meters if I was lucky and then I was always last is I just didn't have the
Sophie Shephard: Hmm.
Kylee Black: long during like sustainability. So a lot of my um childhood I think was also self -managing my reality. um But um it kind of becomes a little bit complex after that point um because when I was an early teenager
Ollie: Mm.
Kylee Black: um my diet My dad was diagnosed with a brain tumor. And so he had a brain tumor on the left frontal lobe. And so that's all your cognitive skills, your rationale, your ability to function. So he went from running a business, international business, to not being able to cross a road or go through a checkout line.
Kylee Black: to not being able to watch movies and and and waking up in um horror of like being still in the nightmare and stuff. And so um for me, in those early years, like then a lot of it became around supporting the family and navigating that.
Kylee Black: um I didn't really talk about what was happening in my world um and I remember mum always tried to get me talking um but I found it really hard um yeah and I I think as a young person like you can't just say oh my knee's hurting today and my ankle's hurting today and like because pain doesn't move around so you just learn to not talk about it if that makes sense um
Ollie: Yeah. yeah
Kylee Black: And you just I just tried to learn to get on get on with it. So throwing myself into my schoolwork was a huge one. Never really fit in in school.
Kylee Black: um and um And so I guess a lot of what I do and where I am today even is formed from a lot of those early um those early years um and wanting to be part of community and wanting to connect in and and desperately wanting to belong, but never quite being able to match my will to the experiences of others, if that makes sense.
Kylee Black: um Loved art, you know, um but but a lot of those things like writing, like
Ollie: completely.
Kylee Black: you know writer's cramp and fatigue like and so there's like all those things that you just didn't understand why you couldn't do those things easily um that makes sense today but didn't didn't when i was younger and um so a lot of my time was spent looking after siblings and supporting family and um and throwing myself into interest areas i guess
Ollie: With the challenges you faced even in those interest areas, I'm curious as to how you found early ways of adapting it, you know, to to continue with your schoolwork or art or these interest areas that let you up around the challenges of supporting your family.
Kylee Black: Well, I left school really early um because I wasn't keeping up in school um and I was finding the days and um it was just too hard.
Ollie: Yeah.
Kylee Black: um And after I had my appendix out, I basically refused to go back to school.
Ollie: yeah
Kylee Black: um to high school. um um But also I wasn't well enough um and and I wanted to do more work and I found that I worked really well into the evenings and even now, like those mornings and and that kind of thing, ah there was a lot of difficulty around that. I had a lot of trouble with like sitting on normal seats and school seats and on the ground. Never really understood why. I have a whole lot more understanding now. Yeah, so I ended up doing a homeschooling through my college years and completed three years in two. And then just after my 16th birthday, we moved into and onto doing a certificate in film and television production.
Kylee Black: um
Ollie: Yeah.
Kylee Black: um out of home and loved that, but also burnt myself out that year too. you know were like um yeah So I didn't really have good coping skills at that point in life. um Wasn't necessarily doing super well. um Obviously on the outside, like a lot of people didn't know the struggles, but those in my inner world and the behind the scenes were holding a lot more of that.
Kylee Black: but also as a young person when people don't see the external, like I remember mum desperately trying to get me to talk to someone cause I just, I didn't talk.
Sophie Shephard: Hmm. Hmm.
Kylee Black: I bottled a lot of it up. I was quiet um and quiet. I'm not actually ever quiet, but do you know what I mean? Like off um um I remember mum saying like talk to
Ollie: Yeah.
Kylee Black: like this person in our world, like you're allowed to talk about things going on and it's okay. um in And they didn't even believe me, you know?
Kylee Black: like so So when no one in your world believes you about the things that you're saying or or what's going on or the navigation of things because they don't see it because it's behind closed doors or you're not going out when you're not well or you're not going out as a family if if dad's having migraines all the time and you know and it's really unwell then um ah that was probably the hardest that's probably the hardest struggle. um I ended up, and I don't talk about this, I haven't talked about this a lot at all in my world today, um I ended up in Australia um at ah and spent 13 months in a live -in residential facility where for the first time I got space to be me and pull away. Mum is phenomenal.
Kylee Black: And so much of the skills and the tools that she taught me when I was younger have been life changing. You know, speaking truth over yourself and lifting yourself up and filling your own bucket and plugging your own holes and holding those things that give you hope and fuel.
Kylee Black: um But when everyone around you has is, when your world doesn't make sense with the world of those around you or the world that others are living, there's an incongruence to that too. But why am I different? Why can't I i keep up? And I knew, I just remember, I was just like, mom, I just want to be like others. I just want to be able to do things like others. But I couldn't, you know, I had hearing aids put in um just before my 16th, 15th or 16th. And um when I was at uni or um going through higher education.
Kylee Black: um you know they were I had a headset on my head and then the teacher had a lapel but I hated it because it made me feel different and I felt like I was in a different world from everyone else um and so that time to step away, to be with other girls my age, to see how they do things and to work out what my body can do and what it does look like and to be believed and
Sophie Shephard: Mm.
Kylee Black: And to have time to, I think, speak the truth over my life and and renounce the lies and step into those things and fill myself and and work out who I am and and and navigating all those challenges was really foundational to what was about to step into the whole next level of chapter of life.
Sophie Shephard: Absolutely. thank you for sharing that experience, because, you know, I really appreciate, you know, these aren't always easy things to talk about. And, you know, there's a lot behind them, like these are often, like you said, so often, these are things that we do kind of keep hidden. And there's a lot that people don't see. So thank you for your vulnerability and sharing that I'm curious because I know from previous conversations we've had that you know you've spoken about how having that sort of diagnosis and and sort of a frame of reference to view your experiences through
Sophie Shephard: can really be a bit of a game changer in terms of how we kind of understand ourselves and in the world. And I'm curious to hear from from sort of those early experiences, how you then sort of progressed towards that sort of time of diagnosis. What did that sort look like for you?
Kylee Black: Yeah well I came back and um I came back from Australia and was probably in like what I felt was the best place um that I'd been um because I had a bit more understanding around what I could do, what my body was capable of, where my boundaries of my body laid um but also um I was more confident in what I needed to do for me so I was able to get into work, I was working with people with um supporting people with disabilities into work um and a pre -employment capacity and supported employment space um and I loved it um but I was only able to work part -time and so I would work but then go home and nap to be able to do anything in the evening and that's just what I had to do um but I was working out how to make life work for me. What I haven't touched on yet is that I've never felt stretch in my muscles before
Kylee Black: I don't understand why we stretch. Why do we do those calf stretches? Why do we do the legs behind us? Why do we do this one when you push your arm behind your head? Like I've never felt stretch in my muscles before.
Kylee Black: And so like I can do the splits and I can do different things.
Sophie Shephard: Hmm.
Kylee Black: I was doing a kickboxing dance thing at the time, um which I loved because I was getting back into dance and I'd been doing tap earlier.
Sophie Shephard: Hmm.
Kylee Black: um And I remember we were doing this task at the time where you would stand straight with your back and your feet up against a wall, and then you would have a partner walk your leg up till it's like maximum stretch and then push you maybe 10 % past to give it a really good stretch. we had a um ah yoga Pilates teacher and um she was really peeved man.
Kylee Black: because um she's been practicing, she'd been practicing this for like 15 years and was so proud she could get her leg up to like this. And then they came and did me and of course they walked my foot straight up and my ankle bones touching the wall behind me doing the split standing up.
Kylee Black: And I was like, you can go further. And they're like, I know.
Ollie: Okay.
Kylee Black: No, that's not normal. At the time I was getting a whole lot more flexible and I didn't understand why. My body was getting bendy and others around me were noticing.
Kylee Black: They're like, are you working on your flexibility? Cause you're getting way more supple. Like you're getting way more flexible. I was like, nope, but I know, right? Like, um and I was noticing it and, um and yeah.
Ollie: my
Kylee Black: And so at one of those events, actually I slipped on a newly waxed floor and I tore my hamstring and groin muscle and what I didn't know then um is that it would trigger a little known illness, a disease that I had no idea about, um complex regional pain syndrome, RSD. And so I had the injury and then very sheepishly got up and kind of managed to hobble back to the car, managed to get myself home and then couldn't
Kylee Black: like walk up the stairs at all like I had to get on my knees to kind of crawl up because I couldn't put any weight on my leg to stand up to the next step so I could only use my right leg to get up each step but I thought you know like we've done so many injuries in my life like she'll be right it's all good you know like a few days, ah it'll be fine. And everyone's like, you okay? You don't look okay. And I'm like, yeah, fine. Like, no problem. You know, I do this all the time. It's not a big deal, but I heard the pop and I was just like, I heard the pop and I felt the instant sear. And so it just kind of like bit it back. It was really sore. Anyway, I got, I found this deep heat cream. And you can tell it's like a minute right now, eh?
Kylee Black: Um, so I said to mom, I'm like, mom, the back of my legs really sore. Like it's just killing me. Like it is so sore. And I said, but I found this small packet. It was like a little sample packet of like deep heat cream. I'm like, could you just like rub it into my leg and it just might help ease the pain or whatever.
Kylee Black: And um she did honestly within a really short space of time. I'm like, mum, there's something wrong with this cream. It's burning me. Mum, it's really burning me.
Kylee Black: And it felt like someone had taken three tail layers of the top of my layers off my skin off.
Sophie Shephard: Mm.
Kylee Black: um I couldn't sit. I couldn't lay. I got into a cold bath and I spent the next few days in a bath or a pool or whatever. Like I just couldn't. escape it um and at the same time i was losing more ability to put weight through that leg and i'm like i went into my doctor i'm like this is really weird and i said to my mum like this makes no sense injuries don't get worse they get better um and and this was getting worse and my leg started swelling up my foot started swelling up It started changing colors. It was going really bright purple. It was starting to get a shine on it and it was building a crusty layer of skin. um And then my foot started getting really sensitive and I couldn't put my sock on and I wasn't tolerating my pants. um And I went into the doctor and he's just like, look, I don't know, but there's a sports doctor that has just finished his sports program and I think you need to go and see him. And he sent me down and he's like,
Kylee Black: I think it's this he said but I do not want to diagnose it so he said you have three days to prove me wrong um and he sent me home with the information but he's like please let's just see what we can do gave me some medications and he's like I really don't want to diagnose this it's not a nice diagnosis and um you've got three days basically and come back in three days and we'll see how it's going. um They got me on to a, um he diagnosed, got me over to a pain specialist quite quickly um and and obviously I still don't know all the things around it but you know the CRPS is spreading was gone from my foot, it was up to my knee and it was going purple and splotchy and all those kind of things and a few months down the line and so mum was helping me, I couldn't
Kylee Black: sit at all so I could be standing or I could be flat but any stretch on my legs from sitting up was causing the stretch which was causing it worse and um and then I had a something happen and I said um mum the the CRPS are spreading she's like what do you mean and I'm like it's moving to my hand and she's like no don't say that I'm like that's going to be purple tomorrow because I'd worked out where the layers were of where the symptomology was happening. And I was like, mum, I think it's moving to my hand. My hand feels funny and it's all tingly. And um mum was just like, well, look, just go to bed and let's just hope for the best. And I woke up the next morning and my whole arm was purple. And that really changed things for me and what I could engage with and how I could get around.
Kylee Black: um They got me over to Rotorua Hospital really quickly and um I was under a specialist there who was working in ketamine protocols. And so they got me under really high dose ketamine treatments really early on. um And they actually did a study on me and I've got the videos from it of them doing the study, but it was really interesting. So they would take me down to theater and do really high, high dose ketamine. They don't do it now um in the same way I don't think, but it was a similar time when the Mexican ketamine protocols were out and they were doing the ketamine commas and things like that. um But um he took me up to a pain day
Kylee Black: ah because they didn't have the ketamine on and then they would give the high dose ketamine and my foot would go back to normal size, normal colour, everything.
Sophie Shephard: Hmm.
Kylee Black: And um and then that stopped the ketamine and my foot blew up and went purple again.
Sophie Shephard: Hmm.
Kylee Black: And they were just like, it's just phenomenal. And, you know, when they gave the ketamine, he's like, watch this to my mum.
Sophie Shephard: Hmm. Hmm.
Kylee Black: And he said, if I move a feet, he said, this is how, cause you know, there's like, even back then they were, you know, there's all those terms around of like, you know, and putting it on or like all that kind of thing.
Kylee Black: And he's like, you know how you know it's real. And he said, watch this. He's like, she's under full ketamine. So like full anesthetic. He said, your body, you have, she has no, no, um,
Kylee Black: She has absolutely no like conscious reactions at this point. And he took a feather and he brushed it over my leg and my all my legs pulled up and I pulled away from it and he said, that's where you know. That's the body keeping score.
Sophie Shephard: can only imagine for you how that would have sort of felt to watch some of those videos and to see those changes. But I think what's really um sort of Fascinating in that, and and I guess the challenge is that you know i just it makes me think of all the people out there who might have you know sort of pain conditions that maybe aren't you know don't have you know those obvious sort of overt signs that we can easily point to.
Kylee Black: I was so lucky, honestly.
Sophie Shephard: yeah
Kylee Black: So much of my journey. So like horrendous, horrendous. um But... um It made the journey easier in a lot of ways because there was a physical, external, viewable outcome.
Kylee Black: um
Sophie Shephard: Yeah.
Kylee Black: And um the other thing is that when I went under the ketamine, I would pedal my legs. And then as the ketamine came off, I lost the ability to pedal them in the same way. Like I'd go back to not having the same movement patterns again.
Kylee Black: Yeah, really, really interesting. um But I was a scared young person.
Sophie Shephard: Hmm. Absolutely.
Kylee Black: terrified, didn't understand what was going on in my body and why. um However, this is where going back to the tools that I learned and this is where I feel so grateful for a lot of my journey.
Kylee Black: And like, you know, we look at where we are today and you're like, you know, there's not a lot of my life that hadn't been robbed, stolen or taken from me at that point in life.
Sophie Shephard: Hmm.
Kylee Black: Like I've lost a lot of um normal life experiences and ah things, but um I look back now and I'm so grateful because every single thing I've been through has brought me to where I am and the person I am today. And that's where I went back to and I knew I'd been through depression as a young person. I'd been through suicidal ideation and not wanting to be around and um it all being too hard, but um wanting to fight through like I always, I just didn't understand why life didn't work
Kylee Black: for me like it did for others why I couldn't keep up, why I couldn't do the things that I wanted to and why is my body different and no one had answers for me and why have I got these things happening um but mum always used to speak positive affirmations and and filling myself and not looking for the external things and and growing and in in going deeper in my faith and my faith has been a huge foundation for um what I've been able to build my life upon but um but I knew, I knew that I knew my ability to withstand this journey um was gonna be in my mental resiliency.
Kylee Black: and that I couldn't lose myself to the pain and I had to fight the fear. at that point, it was about desensitizing and and learning to use and and I'm so grateful for the access that I had to ketamine through that part of my journey, because it certainly helped and still helps.
Kylee Black: um significantly in my journey and I seem to get so much more leverage, I seem to be able to use it as a as a a leverage at it to gain ground. um I went through a huge part of my journey where I wasn't able to access, i didn't have access to it anymore and I often wonder if I'd still been able to access it, how much further I might have come.
Ollie: Yeah.
Kylee Black: But um I ah knew that I had to find my why and my reason and everyone kept talking, you know, at that point I was bed bound.
Kylee Black: I don't usually use the word bound. I'm not wheelchair bound. My wheelchair gives me my life and my freedom.
Ollie: and
Kylee Black: However, my situation at that point did bind me to my bed because it wasn't my choice, it wasn't my control.
Sophie Shephard: Alright.
Kylee Black: um And I didn't have the supports in place that allowed me to live my life like I'm living today, you know? um But I knew that I had to find a thing that would allow me to go through.
Kylee Black: so um People. kept talking about, oh, it's horrendous, isn't it? Oh, you poor love. And everyone was talking about what I didn't have and what I couldn't do. But no one, I mean, my beautiful mother is like the most amazing, steadfast person in my corner. And I had a phenomenal psychologist that stepped in alongside me for that period of life as well. um But um I knew that if I was gonna get through, I had to find my why. And so, yes, okay, there's all these things I can't do.
Kylee Black: but what What can I do? What do I have? Because we all know that, um and I love analogies, right? So here's a little analogy. um I felt like if I fell into a pit of depression,
Kylee Black: my journey would be a hundred times harder or more. Like if I lose the battle to my mind, not that it's not a lost battle, but do you know what I mean? Like I knew that I felt like standing on the side of a sand dune, you can feel safe and it is safe, but actually it's really, really unsafe territory.
Kylee Black: and it felt like depression's like standing on the side of a sand dune and you can feel safe and be safe but at any time that sand dune can cave out from under you and now I'm at the bottom of the cliff and now I've got to use 100 times the energy required and I can get nearly up to the top and then be back at the bottom. All circumstances outside of my control.
Kylee Black: But if I can create a series of fences between me and the side of the sand dune, so if you think of a beach and you've got the side of the sand dune and then you've got the softer sand and you've got the harder sand and then you've got the grassy sand and then you've got the grass and then you've got the car park. If I could start to create fences between me and the side of the sand dune, then I intentionally had to start crossing over the fences before I was in a place of real unstable unsteadiness where life can cave out under me if that makes sense.
Kylee Black: So how do I put things in place?
Kylee Black: And um I also knew that my ability to connect and be part of community was a huge part of. my ability to maintain wellness in my life and having a reason and a purpose and a meaning and a being. And I had lost my physical access to my body. um And so, but what can I do and what did I still have? And so this is kind of like, this is the culmination at this very moment of every part of my life was about to be like a seismic shift that changed the entire trajectory of my life moving forward.
Kylee Black: And I looked at my situation in my reality and I was like, well, what do I have? I'm like, well, I can move my right hand. I have access to the internet side of the computer. I can see the lake, the sky and the sun. And I made that the beginning of my journey is that I had a five gratitude list and that was my five gratitude every morning.
Kylee Black: Then when life was really hard, I did 10 and 15. And if it was really hard, I just still kept listing them. Because if I can find the things that I'm grateful for and that are blessings in life, then it got my head out of all of the hardships and the circumstances and the difficulties. And I guess I'm really lucky in some ways. And I don't think Dad will um mind me saying, but supporting him and in his journey in that also opened my eyes to um finding those, um what I've learned from you Sophie recently, glimmers and um in seeing what I'm grateful for and and seeing like the ability to see those things can change things for myself but also change things for my family and those around me, you know?
Sophie Shephard: Hmm. Hmm.
Ollie: Yeah.
Kylee Black: um But that's part one, okay? part two you can't just sit in the um call these all the things i'm grateful for and now what like cool so and what life's still shit right um i still can't get out i still can't connect well i was just really lucky at that point in time this is giving away how old i am guys eds skin might i add doesn't dictate how actual young i am
Kylee Black: um um um Social media was just starting. um you know um At that point, there was nothing like we have it today where you see young people living at home on hot in hospital, in and out of hospital with feeding tubes or central lines or wheelchairs or different disabilities or living a good life. like I was a young person hidden from the world and no one knew how many young people were hidden behind closed doors because we didn't exist.
Kylee Black: we were invisible to the world. And um I thought, well, you know what, I have access to my right hand, I have access to the internet. And so I made it my job to reach out and support and encourage others. Because if I'm struggling today, likely others out there are struggling also. What I had is access to my hand and what I had is access to the internet. And I had time and a lot of my friends didn't. um The other thing is that I, this is,
Kylee Black: um Ollie, I might whisper this one to you because Sophie is a physiotherapist. um I hate, no, I'm just teasing. um Oh, right, cool, okay.
Sophie Shephard: So, sorry, sorry, I should jump in too. So here, Ollie is actually a physio too, although he's also he's also a yoga he's also a yoga instructor and then sort of mindfulness um educator as well. So.
Kylee Black: Well, I failed that one then, cool.
Sophie Shephard: yes
Kylee Black: I hate repetitious exercises.
Sophie Shephard: Yes.
Kylee Black: They are redundant. I know they're important and I will do them, but it seems pointless and senseless and it just doesn't click for me. Now,
Kylee Black: ask me to do something that has an outcome, home a hundred percent in, right? So when I started trying to, when where I was working on relearning and rehabbing my left hand, I started doing this, you know, and moving and I would spend hours and hours and hours and hours, you know, doing things to get movement back. But one of the things that kept me going is quotes and putting quotes and positive things around me and positive affirmations. And so I started making these small encouragement books um about, you know, eight by eight and I put something in this hand and then make the hand stick it down.
Kylee Black: as a way to engage my hand in functional reactivation. um And in that way, I could also go on and do the activity and the task was significantly longer because it had a meaningful outcome that made a difference to something.
Ollie: Brilliant.
Kylee Black: um And I could see the opportunity in it. And so my whole rehab plan the whole way around, like when we started working on, you know, using the grip and stuff. Instead of using just basic like moldable gel things, we used cake icing and made cake figurines, things like that. But I started making these encouragement books and and yeah, it started from there and then other people started sending things in and and and that was the beginning of ah setting up spirit spark plugs.
Sophie Shephard: That's so amazing and I'm keen to ask it to ask you more about spark plugs and the business and and a few other questions as well. um I really love your point and I know Oli's thinking exactly the same thing with your comment about hating repetitious exercise and that we can't say this to a physio because I think this is something that Oli and I have spoken about a lot in the past and something that we have basically said between ourselves as well that like so many people find the same and and you know when when people are also working with really limited bandwidth for um you know maybe it might be limitations in energy or limitations in in physical capacity or even just time and like you know there's only so much we can fit in our day to day depending on how much people are juggling and you know in ah in a lot of cases it's kind of like is is
Sophie Shephard: that style of exercise, is that actually the both the best and most meaningful use of of sort of energy and time? and i mean Of course, certainly there are times where that sort of style of exercise is important, but I think as much as we can, it should always be about trying to bring it back to meaningful activity and prioritizing that wherever we can, because that's ultimately what we care about in terms of getting people back to where they want to be.
Kylee Black: Yeah.
Sophie Shephard: Oli, I don't know if there's anything else you want to add to that, because I know it's something we've talked about at length too.
Ollie: Yeah, this is something that within physio has been a ah long struggle. um So I relate with you there, Kylie. That frustration of the repetitions, even prescribing it, I would feel like frustration of going, I know that you're not going to do this.
Kylee Black: Well.
Ollie: You know that I know that. So how could we like it? How could we cover about it more creatively? So that that um using that task to even as you said to do it more than you would have otherwise it's just a brilliant example and why i think professionals like us can often learn so much more than than sometimes you know we can provide to you uh with um working with people like yourself on your journey that's um those functional things brilliant brilliant
Kylee Black: Motivation. I remember one of my favorite things, one of my greatest accomplishments too, was being able to stand up, lean against a bench and using my hand to a need to um hold and measure things out into a bowl and then knead a dough and then roll a dough out and make pizza for my family. But I was standing. So I was actually stood longer than you would just stand to do a set stand thing.
Kylee Black: I had the distraction to allow me to do it longer. I could push through pain further because I was doing something that had a really tangible, meaningful outcome. So for me, it's been a huge part of my journey.
Kylee Black: But if I can step back for a half second, is it all right?
Ollie: Sure.
Kylee Black: And I'll go back to touching on that seismic shift. The question that changed my whole world
Ollie: Mmm.
Kylee Black: I was looking down and going, okay, I've got my right hand, but what can I do with what's in my hand right now?
Ollie: Mmm.
Kylee Black: What can I do with what's in my hand? And that's where I said, I've got my hand, I've got access to the internet. And I know for myself, even now, if I focus on my world and my reality and what's going on, I drown and I drown really quickly and it's really overwhelming and I feel underwater breathing through a straw.
Kylee Black: But if I can look outside of my world to the worlds of others to see what I do have and not what I don't, what I can do and not what I can't, and then going back to what's in my hand and what can I do with what's in my hand right now.
Kylee Black: It changed my life, but it has become the mantra I have used to now teach, and help and inspire others. um And there's a whole, when I do speaking on it, um I've got a whole like series of actions that I do along with it that help kind of like feed in.
Kylee Black: and I talk a lot about also I bring in something that I'd learnt later on which is around pivot and how you hold life lightly and loosely um and that gratitude to hold what's in my hands right now but the thing that changed my world is to realise that in that moment I gave myself my power back because it doesn't matter what's happening in my world and how much power I did or didn't have and like in the future, I would go on to spend lengths of time in a neurorehab, inpatient neurorehab. i would go up rehab I would go on to spend years in and out of hospital and in a hospital more than out and not having control over my body again and not having the ability to make decisions for myself or you know choose when I got off or
Kylee Black: ah what was so any of that and um or even you know when i wasn't able to eat and drink anymore or um life changed and like the ability to go okay but what's in my hand right now what can i do with what's in my hand right now to realize that it doesn't matter what's happening in my world outside of my world i can live a good and a full life here and now um a lot of that is because of access to tools and technology like internet like social media, like engaging. Like if you think my grandma said years ago, what would you have been done if you'd be born in my day? And I was like, I'm pretty sure that's why I wasn't born in your day, Nan. Like actually my world even today would be really, really small, limited to a bedroom. But because of access to technology, like even now, like fast forward so many years down the line,
Kylee Black: Um, a lot of my internal organs are dropping. I've lost a lot of my bow. I have a feeding tube. I have a central to a line and most of my life has to be in recline. I can only sit up for short periods of time for limited periods of time. So essentially most of my life is still whatever, you know, like reclined or.
Kylee Black: I don't use the term bed bound because I don't even identify with that. I don't, it's hard, I don't actually see myself as sick or I'm well because I just, I can't wrap that around in my brain, but I know I am and I know my reality and identify as disabled, but yeah, it's just, it's a thing.
Kylee Black: But, um, I now run a business and I support others and I encourage, like help others to find what's the thing that sets your heart on fire. What do you love to do? Like out of a hospital bed, I started, um, a business Kylie and co and we've now got 1500 products on the website and collaborate with a whole lot of others to help them engage and give capacity and support for people to engage how they want, where they are at, whether they're at home or.
Kylee Black: and hospital a lot or can be up and about or can't be or have neurodiversity or anxiety or overwhelm like we have an open door policy and young people just come and hang out and be part of the room like so what I term pre pre -employment it's a slow process of just being like how do you be in another space when that's your full capacity.
Sophie Shephard: It's so amazing, so amazing to hear what you've been doing and what you've been able to build in, you know, what you said before, you know, all of your experiences and your journey have enabled you to to be in that space where you can be that person and craft these spaces and these opportunities for people, which I think is just such a
Kylee Black: tell
Sophie Shephard: a beautiful example of you know sort of doing what you can with within these circumstances and really looking for those opportunities to live a full life regardless of what life does look like and and that there's opportunity for that regardless of circumstances and that's not to say that you know circumstances can't be really challenging
Kylee Black: Brutal. It's still Brutal It's still hard constantly and every day and life's not better.
Sophie Shephard: yeah
Kylee Black: But one of the things I worked out early on is that like, and it was a struggle and it and it came back to what I'd been through being younger as well, but I realized that life's not a dress rehearsal.
Kylee Black: and my life was moving and life was going on without me regardless and I don't get to choose my circumstances but how do I choose what do I have choice and capacity over like I might not get to choose my circumstances but how do I choose my outcomes or how do I choose the life that I live in that and that I don't choose my circumstances and my reality, they are what they are.
Kylee Black: But if I let that steal my attitude and every other last thing of capacity I have to choose, then it's stolen twice.
Sophie Shephard: Hmm. Hmm.
Kylee Black: Like it's stolen what it already has and then it's taken everything that I have had capacity to still choose and I determined that I didn't want life to take more from me than I'd already lost. So how do I work out how to live the best life I can within the circumstances I have and how do I make a difference and how do I support and how do I ensure that others weren't isolated and lonely like I was and how do I build community that supports and and and wraps around those that are often on the outsides or haven't been able to keep up. How do we create capacity? How do we support and get behind one another? You know, the idea alone we get so far together, we get so much further. the That's a whole other conversation. But how how do I choose the best for me? The reality is, right, is that
Kylee Black: You can walk away from me. You can walk away from me. My family and my partner can walk away from me. I can't walk away from myself. So the only person that's genuinely hurt at the end of the day is me. Because, because, you know, if I'm shitty or grumpy or yelling at people or angry or aggressive, like people aren't going to want to be around that or deal with that as much.
Kylee Black: But so what can I control and and how do I navigate that? and And the other thing is that when you're going through really hard, complex illness and and things are a lot more struggle, the reality is that all of us struggle in life.
Kylee Black: And what I found is that because of what I was going through, I was being isolated further because people didn't want to talk about these struggles with me because they're like, oh, but yours are so much worse or you're going through so much harder. And I'm like, can we just stop? Like the flu sucks.
Kylee Black: And I i can empathize with you that the flu sucks without you or friends comparing it to my world, because as then there was nothing to talk about. There was nothing to share. And I didn't just want to be my illness. and and And so me being able to be there for my friends was something that I could do. And and then I'm building it from that and having what we code is, we had illness -free days.
Kylee Black: So like yes, you can come over, yes, but there's no conversation about illness or sickness, because I'm more than that.
Ollie: So as I'm hearing you talk I'm hearing all these wonderful things that you've that you embody so well this ability to really prioritize and value the present moment creating community always social connection the things that we know that help people with various forms of persistent invisible illness so much
Ollie: shows to the world really that there's so much more to people than their symptoms, than their diagnoses. it's the It's the skills and gifts and brightness they bring to others like you do for so many. What's that been like since you've started it?
Kylee Black: I didn't start ah setting out to do what we do today per se. um There's whole chapters of my journey that we haven't talked about necessarily, um that have kind of like formed and moulded to kind of come where they are. um I've been with my partner since 2020 and he's phenomenal and amazing. and and that's a whole different story in itself, you know. But my mother -in -law was the one that was like, um because I, you know, I was trying to find things when I was in hospital for a long time, it was through COVID and um you didn't have visitors and you didn't have people coming in. and But I also struggle with just being seen as a body in a bed.
Kylee Black: and you know and it's plain and it's redundant and it's just next next next and you just feel like you are a body in a bed. And so for me early on I developed a pillowcase. It's cotton on one side, flannel on the other and complementing fabrics again giving power back where I didn't have it. When I couldn't move easily I could turn my pillow over and change my aesthetics. I could make it warm or I could have the cool side. I could have different patterns so that it gave me control to navigate my world. What I also noticed is that when people came into my room, everyone identified with the pillowcase and made comments on it and they lit up and they were sparkly and they engaged with me outside of my illness.
Kylee Black: um and it gave me an opportunity to get to them to share bits of myself with them. I'm also really lucky that where I am we've got a teaching hospital and a lot of my friends in the medical health profession and so a lot of my friends were doctors and anesthetists and surgeons and nurses and so I did have personal connection within the hospital that did help make it easier because sometimes like the people that were treating me knew someone that knew me and that or I worked really hard to find those connections of identity because all of a sudden I wasn't just a patient I was a person that was connected to someone that they knew and I found that really changed the relationships.
Ollie: And.
Kylee Black: For me I guess it made me feel like I had something of connection outside of just being a sick person. um And often joked that I could keep up with them because I had learnt it all from the other side of the bed. But there really wasn't a lot different between them and myself except that I was on the other side of the bed.
Kylee Black: and living it. um And I also found that being able to engage with like a fun pin that you wore or fun earrings allowed me the opportunity to have a non -medical conversation with you.
Ollie: yes so important
Kylee Black: And this is where it comes back to one of my core points, those opportunities those um for human to human moments and human to human interaction outside of clinical conversation.
Kylee Black: that allowed me to be another human meeting with another human. um And then being a young person in my 20s and early 30s, I didn't want to use an old person to pick up.
Kylee Black: I didn't want to use things that looked medicalised, but I couldn't find the things that worked for me.
Ollie: Yeah.
Kylee Black: So I started looking all overseas and a girl again, I was a girl in a bed with a phone. So I had time and I would email people in find and find and work things out. I started finding things that worked for me and then people like, oh my gosh, where did you find that? How did you get that? Where do I get it from? like um And I was like, oh, well, if you go here and then email here and then go here and they'll send you to here and they'll just like look cross -eyed and like, you just get me one and I'm like, sure.
Kylee Black: um Yeah, and then nurses started coming up and asking, hey, I've always looked for something that could help me with this, do you know anything? And I'm like, no, but I can find things and so did I get things in. and um and And other people started coming up to me and like, I've been looking for something for like 20 years, do you have anything or know anything that's out there?
Kylee Black: um At the same time I was ordering things from like six different websites a month and then like if we go back to like when I started Spirit Spark plugs and I had realized that a lot of us were doing the same thing over and over. We were all doing the same thing but how do I work out where to get a hearing aid product from?
Kylee Black: and a product from this and someone else that's making this and someone else that's making this but also how to use a disabled person do it if I just want to make the product and that's the capacity that I have but now I'm throwing into social media and e -commerce and websites and design and sending it out and postage and but I don't have the support for that. And I just wanna do this one thing. And I was like, how cool if we had a platform that brought all of that together, because you and you might not be connected, but you might have really cool products that people want from each of you.
Kylee Black: But if I don't know you or your community and your community don't know you and your community, I'm like, this is really stupid. We've got all these like random independent people and people were coming and going because circumstances changed and everyone was learning the same stuff over and over on their own. There's youth in business, there's women in business, there's men in business, but there was nowhere that I could find how do I be a disabled person in business? And so I started Kylie & Co. ah My mother was adamant that it had to be called Kylie and co. I do a lot of advocacy in the background. I've been in a lot of advocacy and speaking up and I was.
Kylee Black: no one. We were in Wellington and three different people stopped me to say hi and and early in our relationship with my partner and we were in this one store and there were these two girls talking behind the counter and they're like oh my gosh I think that's Kylie. I'm like I think that's Kylie. Is that Kylie Black? And then she's like yeah so one of the girls was like you should go and say hi and she's like oh my gosh no. My brother -in -law heard and she's just like are you talking about her?" And they're like, yeah, yeah, i follow I think I follow her on social media. And she's like, yeah, that's Kylie Black. Oi, Kylie, there's someone here that wants to speak to you. But she realized the, and whether it was like a timing thing and it was just like one of those moments in time, but she realized the impact, but she's also phenomenal businesswoman.
Kylee Black: and she does a whole lot of crafts and she had been doing markets and she wasn't able to do those now, but I wanted to get out there and connect with people. And so she's like, well, you set that up, you do the markets, you sell the products and I'll make the products. And we incorporated them both and it gave me opportunity to connect into community with what I could do in a way that I could do it. um And yeah, and then, but she said people will get behind a person before they'll get behind a thing.
Kylee Black: And she said, if you use your name, then your reputation, your name goes ahead and you can use that to push doors open to support others to move them forward and to open doors for others.
Ollie: 100%.
Kylee Black: um So we now support other people to put their products up and support other people. um and others to do what they can with what's in their hands. And we're one of our young people at the moment ah designing a whole lot of illustrations for stickers that we're about to release.
Kylee Black: And, you know, she's, you know, has to be reclined and home a lot, but giving that opportunity to engage in community and connect in and she comes up to stay now.
Kylee Black: And I'm so grateful because I know what it's like to have the opportunity to go somewhere and just be a young person for a few days outside of your illness. So honestly, to be able to do it for others
Ollie: Yeah.
Kylee Black: I've spoken a lot and around in circles but it's the greatest most phenomenal honor and privilege and also to realize that life isn't perfect and things aren't better and and it's still ongoing um but I am so grateful to live the life I do now and to start to use some of the experiences and things and the learnings over the years. I don't think you learn the depths of yourself um when you're not in the intense struggle and grapple and wrestle.
Kylee Black: While i that's hard, I'm also immensely grateful because I've had to dig to deep depths. But that brings deep richness too.
Sophie Shephard: ah hundred percent And it's just, it's honestly, it's just such an amazing thing to be able to sit here and to listen to your story and to your experiences because, you know, to to come from where you have and to, you know, not even come through the other side because that implies that it's done.
Ollie: I'm different.
Sophie Shephard: And like you said, it's ongoing.
Kylee Black: um
Sophie Shephard: But to be able to approach things with such a perspective and to have the impact and inspire so many people that you currently are is amazing. And I, you know, what keeps coming through what I'm hearing from what you're saying is just really just the importance of community and with what you've been able to build with Kylie and co having that that platform so that you know people can can kind of leverage their own strengths and connect with others so that you know we can move forward together and I know that's something that you're really passionate about as well and you know I just think you know no person's an island right and and I know something that I've heard you talk about before is the fact that when we talk about accessibility and when we talk about you know things that maybe we put in place for people who have a disability or the sort of things that we we prioritize when people have disability, it's not just important for people with disability.
Kylee Black: Hmm.
Sophie Shephard: like We all need community and we all need support and things that enhance accessibility benefit everybody.
Kylee Black: And.
Sophie Shephard: um and yeah i just I love hearing you talk because I think it really just drives home how much we we need that community and we need others and how can we help support people to connect and coexist, I guess.
Sophie Shephard: like we're We're meant to be connected with each other, I think, so it's just Lovely to hear you talk about this.
Kylee Black: ah it it really is like I think the biggest thing to stress is that it is community and it is togetherness like people look at me and they're like how do you do it and how do you do everything you do and I'm like I don't do it all myself and we're building it as community and it's a privilege to lead but it's all of us and um I think and I'll be sort of a transparent and like real here like but what enables you to live a good life is the supports in place, is the things that um help me live and function, um is my team around me and I call my team a crew ah because the reality it is, and that includes my medical team by the way, um they're all part of the crew and they call themselves the crew.
Kylee Black: um um Because it doesn't matter who I am, none of us can do life alone and none of us are independent of our own. We all need people around us. we all need None of us raise our kids independently if you have kids. None of us work independently with no other supports in place. No one milks their own cow or fossils their own fuel. you know like I mean maybe some people do but not every aspect of your whole world is you and you alone we all need people and community sometimes I think I am lucky and I actually have the privilege and the gift because one I can't do life alone I have to do life with others I have to need support I've had to learn how to ask for help
Kylee Black: I've had to learn and continue learning how to delegate. um i won like There's no there's no like perfect perfection here. I get grumpy and stroppy and stressed and overwhelmed. like But there's something beautiful in being able to say that. and ah Because I think sometimes too often we can elevate people to this place that they're not.
Ollie: Yes.
Kylee Black: And to realise that leadership is not some grand lofty up here thing, that's an ongoing thing and it's a every person thing and and it's a together thing.
Kylee Black: and so Yeah, it's like life doesn't have to be better to live, to have full life and my life is incredibly limited in so many ways. And I could have my focus there um and and there's so many things that stop me and at the moment I've had some things happening that means that life is actually more restrictive right now and I'm having to need even more help and support at this point in time. um But no one no one would say that I don't live a full life.
Kylee Black: And there's something um you've spoken on, Sophie, um which is a whole other podcast you guys can touch on in the future. But um the physical and the emotional and the intellectual and the like, my physical capacity is and incredibly low and incredibly small. But I live in my head and my whole world exists in my head and all the things that I do allow me to juggle things and keep life busy and interesting. And the reality is I use it as a distraction.
Kylee Black: um And a lot of my work happens in the middle of night, um but I'd rather do that and and have those things as a positive outcome to navigating pain and illness than being sucked in. If I let myself be absorbed in the world of I'm struggling, I'm in pain, or I'm up at night and now I'm not going to sleep tomorrow, blah blah blah.
Kylee Black: if I can go okay well I'm doing stuff right now that still has meaning and outcome so it doesn't make a night up redundant then that again gives me power back in those moments to make something beautiful out of it it's not meaningless pointless suffering and I think yeah the reality that find those hope moments those glimmers those things that bring beauty and meaning for you but as small as they are. um As a quote um I wrote a number of years ago that's become another mantra for me. um One step at a time and soon enough when you look back those steps turn into miles. It's the tiniest decision of um I can watch a movie for myself right now.
Kylee Black: Yesterday was a really hard day, brutal day.
Sophie Shephard: Thank you.
Kylee Black: I wanted to throw everything out of my room off the side of the thing or throw myself into a wall.
Kylee Black: like i felt I can't use the word here, but like I felt just like, yeah like I wanted to, like I just felt claustrophobic in my body. you know I felt overwhelmed and claustrophobic and like I just wasn't and i just and I just need today to be done.
Ollie: Yeah.
Kylee Black: and But I took some time out, I went and had a really long hot shower and a cold shower and I mixed it between and I tried to get on top of my pain a bit more. And then I came out and I was like, you know what?
Kylee Black: And like for me, I throw myself into my work all the time but I was like I just need to get out of the house so I went out with one of my team and we went down to the lake with a um frozen coke and just took 15 minutes to just be but removing myself from the environment and getting some time out and then coming home and I broke my, i have coat like I don't normally sleep in the day, I'll wait till the night to sleep again even if I haven't slept the whole night before. But I knew in that moment that's what I needed and so I put on a movie and I had time out and I had a nap and I'm really proud of that for me because that for me is growth.
Kylee Black: too, but to realize that it's okay to have those days, it's the small decisions that add up to be where we want to be down the line. I didn't, I could, you asked me like so many people told me, oh, you'll never be in a relationship. Who would want to take that on blah, blah, blah. Like I could have never imagined the life that I live today and the the business that I run with my partner, which is a whole other conversation again. But like I pinch myself every day and, um,
Kylee Black: And it's not made up of the big moments. It's the small moments. It's the everyday tiny decisions. They're reaching out to someone that makes all the difference.
Ollie: I think that is a perfect place to finish. A wonderful discussion that I wish we could continue and probably will in the future. Kylee thank you so much.
Sophie Shephard: i I think we, um I know I have so many questions and from from previous conversations, Kylee I know we've had around some of the. I guess maybe more of the specific stuff around like navigating pain in EDS and and like I guess some of the more clinical management type stuff.
Sophie Shephard: I haven't asked you this yet. I'm asking you now, but like I feel like we need a part two because there's so much that that's there and and I know we've run a little bit over anyway, but I think we definitely need a follow -up if you're up for it because I know there's
Kylee Black: Um. Hmm. It's.
Sophie Shephard: you've got such a rich experience and I think, um yeah, that warrants definitely much more discussion and I think there's so much more insight that you were able to share.
Kylee Black: Well.
Sophie Shephard: um I wonder if maybe as a nice way to help sort of close out this episode in in preparation maybe for part two.
Kylee Black: please
Sophie Shephard: um I guess if you had one bit of advice that you could give to somebody who's living with EDS or other complex disability what what would you say to people who are in a similar position
Kylee Black: Reach out.
Kylee Black: Reach out to others, reach out to friends or family or your online community and and also what what's your what.
Kylee Black: in your thing, what's your thing, it's not necessarily an easy question and um also we know in the EDS not everyone has the same access to care and that's a conversation we've touched on in the past Sophie and it'll be a conversation for the future but I've not always had the easiest access to care myself and it's not like my life is just here and arrived you know it's been a long it's 20 years down the line now like it's been a long road and I'm I'm wary to give platitudes because it's it's there are none it's brutal and it's
Kylee Black: a wrestle and yet in the middle of it there's moments of beauty and so finding those small moments and locking onto those I film and photograph everything in every moment because they are the memories that I go back over when things are too hard and the moments, the glimmers, the reaching out because we can't do it alone.
Sophie Shephard: Yeah, amazing.
Ollie: Can't it alone. So well said, Kylee um There's lessons in that that could certainly will guide me for a lifetime. So thank you so, so much for your time and for your wisdom. And I can't wait to hear you speak more at the conference in just under a month's time.
Kylee Black: Thank you so much, team. It's an honor.
Sophie Shephard: for those of you keen to find out more about Kylee um I will make sure to link her social media accounts and other websites and things. We'll list those in the episode description in and our follow -up blog post as well for anyone who's keen to connect with Kylee
Sophie Shephard: And for those of you who are in Australia or even keen to tune in online, we do have the Ehlers Danlos Society Global Learning Conference coming up in early Feb. Online and in -person registrations are still open. So even if you don't live in Brisbane and you're keen to attend, um you are able to access online registration and zoom in from anywhere. So um I have the privilege of being on the same panel as Kylie and will also, both Oli and I will be there as part of the VIVE team.
Sophie Shephard: if anyone is planning on being around, please come and say hello and Kylie, thank you so much for joining us and for sharing your experience with us and I'm very much looking forward to a part two.
