Beyond Organised

From Diagnosis To Defiance: Kezia Kecibas' Journey Of Courage, Community and Choice

• Mel Schenker • Episode 29

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What if the hardest news you’ve ever heard became the reason you chose to really live? We sat down with Kezia, a holistic therapist and mum, whose MS diagnosis pushed her from secrecy into radical honesty, community and a decision to pursue HSCT in Russia. Her story isn’t a highlight reel; it’s a practical map made of hospital corridors, fundraising calls, and small daily wins that add up to a bigger life.

Kezia takes us from early motherhood and “accidental” entry into holistic therapy to the decade she hid her illness behind a folded walking stick and a brave face. A blunt prognosis of a “wheelchair by Christmas” sparked a pivot: research, a global web of support and the courage to say yes to haematopoietic stem cell transplant. She opens up about the intense reality of high-dose chemo, the sterile rooms, the morning her hair fell out and the Russian nurse who answered with care instead of words. Back home, progress arrived in quiet milestones: bending a stubborn leg, feeling in her hands, walking with one stick. None of it erased MS; all of it expanded possibility though.

We dig into what actually sustains resilience: asking for help without apology, building routines that restore function, and protecting joy through deliberate adventure, like the skydive that began as a scheduling mix-up and became a training goal. Kezia’s book, Rose Tinted: My Story, captures the parts she once swore she’d never tell, and those pages continue to help others speak up, seek treatment and find their people. If you’re searching for real talk on MS, HSCT, chronic illness coping or even the mindset that turns fear into action, you’ll find it here; told with warmth, humour and zero "beating around the bush".

Follow Kezia @kelebekholistics and find her book on Amazon. Subscribe for more conversations like this, share it with someone who needs honest hope, and leave a review to help others find the show. What’s one brave step you’ll take this week?

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Mel:

Welcome to Beyond Organised, the podcast that helps you simplify your life and amplify your purpose. I'm Mel Schenker, life coach, speaker, founder of She's Organised, but, more importantly, a wife and mum of four little kids. If you've ever felt overwhelmed, like you're constantly juggling everything but never quite catching up, this is the place for you. Here we go beyond just the tidying up and creating systems. We're talking about real life strategies that bring order to your life, but also we talk about the things beyond the organising, the things that really matter, like your parenting relationships and so much more. So grab your coffee and let's dive in.

Mel:

Welcome to another episode of Beyond Organised. I have Kezia here today. Now I'm going to read out a really awesome bio for this lovely lady. You are probably going to be just as amazed as I am as this woman and all her achievements. So today's guest grew up in Cambridge and studied contemporary theatre at DeMontford University. A lifelong sports lover, her world changed when she was diagnosed with MS at just 25. Determined not to let that stop her, she went on to complete an NVQ in holistic therapies and now runs her own holistic therapy business from a purpose-built salon. She's a proud mum of two. Her son is married with a baby on the way. And her tall, spirited 13-year-old daughter keeps her on her toes. In 2019, she traveled to Moscow for stem cell treatment to slow the progression of her MS. And coming home from that experience, she wrote her first book, Rose Tinted My Story. Since then, she's embraced life with a sense of adventure. Skydiving, oh my gosh, parasailing by accident, swimming in the ocean, and saying yes to new experiences. Her philosophy is simple a diagnosis isn't a full stop. Life is for living, and a good sense of humor is one of the best tools we have. I loved reading that about you, and I'm so excited to talk to you today, Kezia. Thank you for coming on the show. No, thank you for having me. I'm really excited. I have to just, before we get into this, I have to ask, what is the story behind the skydiving and parasailing by accident?

Kezia:

Well, well, I'm not an adventure seeker. I mean, I go along, things just seem to fall into my lap, if I'm honest. Um I'm not one that would say, yes, I want to do this, I want to do that. Um so I went for oxygen. So I go to the Leicestershire MS Therapy Centre every week. So I do physio there and joining classes and have oxygen. So I was coming out of oxygen um and I was rushing for the school run. And one of my friends said, Kesia, you'll jump out of an aeroplane. And I literally said, just check my diary, see what I'm doing. If I'm free, yeah, just stick me down. But just check my diary and then rushed off for the school run. And then on my return the following week, uh, someone went, Oh, you're you're doing the uh tandem skydive. And I went, sorry? And they said, You saw me skydive. And I said, Have I? And I'm like, Yeah, yeah, you were put down. I was like, Oh my gosh, okay. And they said, because of insurance purposes, you've got MS, so we need uh doctors go ahead. And I was like, Oh my gosh. But when I've agreed to do something, I do it. Your mind is set. And I was like, okay, okay. And then obviously you have to have training because your legs have to be strong enough. So that set about my training to get my legs strong enough to skydive, um, which is one of the best things. Um but yeah, so I literally wrote took the insurance papers to my doctor and said, Have I got the go-ahead? And then just rang every day, Hi, it's Kezia again. Has anyone managed to sign the paperwork? Has anyone managed to sign the paperwork? And then my doctor did agree to it. And there was, I think in the end there was about 10 of us that did it. And then you've gone. I was the only MS one, I believe.

Mel:

Uh because I got the head. Wow, what incredible story. Now, I have no doubt you're full of incredible stories in your journey and everything you've gone through. And we have such a short period of time. So I'm going to be quiet and I'm gonna let you share your story because I'm sure, especially other women out there who possibly even going through MS themselves, but any other form of diagnosis that feels like maybe even a death sentence, I I would love you to share your story and yeah, go from there.

Kezia:

Yeah, well, it's I mean, I got diagnosed in 2007. Um, and I was halfway through my holistic therapy training because I was I was a young mum. Um, I was looking after my son. This I basically again got into it by accident, so holistics by accident. I was mashing baby food and I was changing nappies, and I was basically watching Night Garden all day long. And I think I'd just finished my university degree, I did theatre, and I'd just finished that, and suddenly was a mum, and I was like, I'd never babysat before, and suddenly I had this little boy that was relying on me. And I was like, I'm not meant to be, I've got polycystic ovaries, I've got endometrious, so I didn't think I didn't think it was gonna happen. Yeah, very clessed this little man relying on me. And so I did all the baby food mashing and watched Night Garden and changed nappies, but I was going a bit stir crazy because I was quite young and I was like, what can I do to have some time for myself? Yeah, and I looked at the local college and they had an accounting course where I could get free childcare or holistic therapy. Now I'm not big on math, so I was like, I'm okay, I can get by, but I was like, I'm not gonna do that. But because there was free childcare, I was like, right, I'm going to do an NVQ in holistic therapies. So I dropped him off at Cresh and went and did my training, and it was purely to get a bit of me time because being a mum is wonderful, but it is the hardest job in the world.

Mel:

I hear you, I hear you loud and clear. So does every other mum out there.

Kezia:

It is literally the hardest job because it's 24 hours, you have no break. Yeah, there's no sick pay, there's no yeah. So it was literally, I ended up doing holistics just to get a break from my son, and I just fell in love with it. And I thought this is amazing. And then halfway through my training, um, I started falling over, and I was really healthy. Do you know? I was quite I did like also, I was at the gym, I did loads of I was just super healthy. Um and I just started falling over, and you know, I went to the doctors and said, What's wrong? And they kept checking my ears and they were like, There's nothing. And then I got to the point where I was being sick and I the room was spinning, and I got quite ill and they couldn't find anything. And in the end, I said, Right, I'm going down to A. And I went and they checked me and said, I'm really sorry. Uh, have you ever heard of MS? And I was like, What? And I was like, No, no, that's that's that's not right because I'm healthy, it happens to old people, you know, all these people. Yeah, not me. It happens to everyone else apart from me. Yeah, and from them, I did the injections, everything I was told, I completed my holistics, but I hid my diagnosis, and I hid it. I think it was over a decade that I hid it. I did theatre, so I was very good. It was, I mean, I look now and I think that was so stupid. And I was thinking, you know, when I start working, are clients gonna think they might catch it from me? Are they going to look at it? It's now I think that is totally ridiculous. Yeah, and then but I can understand that, yeah. It's about fatigue as well. And I thought, if I'm giving a full body massage, is someone gonna think I'm not gonna be well enough to do it? Are they gonna make me ill? So that's why rationale, but after in hindsight, I realised I just hadn't dealt with it, and I just thought if I put my fingers in my ears and don't tell anyone, it doesn't exist. Yeah, bury my head in the sand, everything I do. La la la la, everything is fine. Yeah, so I literally hid it. I think it was probably 11 and a half years or so, but it was over a decade. I hid it. I had a fold-up stick, I had a salon built in the garden, so I it's still there, my salon's fabulous. But I could get into the salon with my stick, fold up the stick, put it to the side, and people, you know, people are it's really relaxing in there, and people not looking for anything. Yeah, so I hid it for so long, and then it was at a routine neurology appointment, and the doctor said, I'm really sorry, there's nothing else the NHS can do for you. You're you're going to be in a wheelchair by Christmas. And I went no, no, I don't think so. I think you've made this, you're you're wrong. And I and I just sort of ignored everything, and people always tell you, you know, all you need to do is eat more cinnamon, all you need to do is spin on a Tuesday with a banana in bed. Everyone's got, everyone has a cure. Every theory under the sun. I'd been to this meeting, and it was just by chance because the kids were with their dad, so it was by chance again, and I didn't have anything to do. And I was thinking, what do adults do? You know, when they don't have their children. So I went along to this meeting, and this lady ran across the stage, and and she said she was in a wheelchair the week, the week before, sorry, the year before, and she had MS. And I was like, right. And then people started, neurologists came up on the screen and they were talking about statistics, and again, I'm not happy with numbers, and then like those numerous, and it was all going over my head. And then this little Russian doctor came out and he went, We are all family, we work together, the c the patients look after each other, we're family from all over the world. And I said, if I'm ever crazy enough to have this stem cell transplant, I'm going to Russia. So in the doctor's surgery, when the neurologist said, I'm really sorry, there's nothing else you can do. And I said, Well, I'll have a stem cell transplant. And he was like, I'm really sorry, you're too far gone. And I was like, No, no, no, I'm not. I'm not going to Russia. And he was like, Okay, okay, crazy lady. And I was like, okay. And then one of my friends said to me, You need to tell people. And I was like, What do you mean? And she said, Make videos, show them what you do every day. And I was like, What, like cooking with the kids? And she was like, No, the MS stuff. And so I started doing YouTube videos. I think it's Kezia Kicks back. Um, you can find them all over YouTube, and just sharing my story. And then I came out to the world, and clients were like, I thought you had cramp. I thought you, you know, when they noticed things, because they're like, How did you hide it? And I said, if you were so desperate to hide something, you can. Yeah, yeah.

Mel:

And they weren't looking, as you said before, you know, they they weren't looking, so it's easy to to miss, I guess.

Kezia:

Yeah, I mean, I got to the point, it's really it makes me sad now for my former self because I literally started retreating and I stopped going out and I stopped going into town, you know, because I went from one stick to two sticks to like barely being able to walk. I mean, luckily I could still go to the salon, so that was like my sanctuary. Um but yeah, then I came out to the world and fundraised, and I had a just giving page, I had meals at restaurants, we had pamper days, we had cinema screening, I contacted so many people, it was amazing, and we fundraised, and then I headed to Russia in 2019 and had a stem cell transplant, which was incredible. I mean, luckily I made videos because I look back and it's like a dream world now. I mean, you have uh chemotherapy, but really high dose of chemo, um, and they harvest your stem cells. So I had my neck slit a couple of times and tubes put into my into my spine to harvest my stem cells. Oh. And then they use it's a centrifuge and clean your separate your stem cells, give you chemo. Um I mean the chemo was pretty intense. Um I mean, I imagine they cleaned my room constantly, and the outside of my door was bleached in case anyone opened the door, um, because they get you solo because it's your immune system.

Mel:

Yeah, and so you've got no immune system left, so any germ could kill you, essentially.

Kezia:

Yeah, exactly. Wow, and then they reboosted my immune system, um, and I was in isolation in Russia. I think I was only in for eight days because they they test you, they were incredible. They tested me at every single point, and the food, I don't even know what I was eating at some points because it was it was like an orange blob with some yellow custard looking stuff, and I had no idea. And I was thinking these people know what they're doing, I'm gonna just trust, you know, they know what they're doing. Yeah, it was an incredible experience. Um, and then yeah, came back to England. I was in isolation here for a while because obviously my immune system I mean I lost all my hair, and um yeah, so that was the shocker, really, even though I knew it was gonna happen. I've got massive curly hair and I had it chopped as short as I could, and then in Russia they shaved it so it wasn't so scary. Um but that was the scary point. When I I literally woke up one morning in Russia and they kept telling me off because I never pressed the emergency bell or the calling bell. You know, to get tea and coffee, I'd just get it myself, and they were like, You're really weak. Please ask something. I don't need to, I can do it myself. Yeah, I'm an independent woman. Absolutely, yeah, exactly. So I was very much like that. But then I woke up one morning and I was covered in hair all over my hands, my arms, my face, and I literally just burst into tears because the thing is like all so short, but I was just like, what is going on? And I pressed the buzzer for the first and every time, I believe. And then this Russian nurse, she came in, she was fantastic. She literally she nodded, and then she just wiped down my hairs, wiped my face, lifted me up, changed my bed, put a hair cap on, gave me a cuddle, then put me back in bed. Oh my gosh. But sometimes that's just what you need is someone to just come in, clean you up, give you a hug. No, you're never too old for that, I don't think. No, definitely not. So yeah, that was the that was the biggie in Russia, but then I came back here and and then yeah, just started my physio. And I mean, I couldn't bend my left leg before I went to Russia, and I came back here and I could suddenly bend my left leg, I could feel my hands better, and it's all things. See, yeah. Yeah, so I'm walking one stick now. So that was what six years ago now. Oh, 2019, yeah. Yeah, that's six years ago. Yeah, so that's crazy.

Mel:

I mean, it's a good thing you went in 2019 and didn't wait till 2020. Oh gosh. Yeah, okay. Your life could be incredibly different now, just based off that timing. So wow, how fortunate. Sometimes things have a way of working themselves out, don't they? Like you just really you don't realize, but looking back on the timing of things, you think, wow, like that timing uh is pretty pivotal to actually you being able to still be able to walk now.

Kezia:

You might not have been. I dodged so many bullets because Brexit happened just after. You know what I mean? But I had money coming in from Italy, from Japan, from Turkey. I had money from all over the world. And if Brexit had happened, that wouldn't have happened. Wow. And then I got back and I came out of isolation um on Halloween actually. Um, and then we went into lockdown because Leicester, where I'm based, is was the first place to go into lockdown. And so three months after COVID hit, we went into lockdown, and then after that was the Russian war, and I managed to avoid all of those things. Wow, and also the neurologist in Russia, um, Dr. Fedorenko said that my MS has just switched to the more um aggressive state.

Mel:

Yeah.

Kezia:

Just just then. So he'd managed to catch it just before. So I think I dodged four bullets, and I'm so grateful and so lucky.

Mel:

That oh, I've got goosebumps. I've I've got goosebumps. I've just like, that is incredible. I mean, it's a hard blow, what you've been dealt in a lot of ways, but I love how despite the challenges and all that, you are so grateful for life and what you have got and the blessings that have sprung up because of it as well.

Kezia:

Like one of my best friends said, I'm glad you've got MS. You know what I mean? I got diagnosed. I was like, Oh, thanks. And she said, if you didn't, we'd be sat in a pub talking because of your MS. We go parasailing, we're living in hot air, we're doing everything that people with MS or a disability shouldn't do. And so I'm like forever grateful for it because every single day I'm excited. What's the day gonna hold? What can I do? What how can I challenge myself? And MS is one of the best things that happened to me, which either makes me sound crazy, but I don't mind. I don't mind sounding a bit crazy.

Mel:

You know, you're not the only person to speak like that. I actually have had a number of people that have come and gone in my life, a few have passed away now, but people that have had diagnosis of some sort, but it's just made them live. It's like, and some of them, you know, they've had the diagnosis as long as you, you know, it's a very long time, and they have lived their life. And when you think of it, the amount of people that I know that are perfectly healthy and perfectly fine and they live till a ripe old age, and they have all these regrets, all these things they wish they did when they could, when they had the ability to, when they were younger, when their kids were little, now they've grown up, they moved out, they got like all these things. And I just think like, and I'm not saying, I'm not saying that anyone that's being diagnosed with something tough like what you've got is a good thing. I'm not saying that, but I love how you can take something that's bad and turn it into something good in the things you can control because you can't control it all. And the fact that you're going, you know what? Yeah, it's a it's a rough card to be dealt, but I'm going to live my life and live.

Kezia:

Yeah, I mean you can't control what life throws at you, but you can control your reaction to it, and that's what I say to everyone. Life is so much fun. It's like do something that scares you, or do something that brings you joy in. You're challenging me now. Yeah, I mean, like, because I hid it for so long, and in hindsight, I'm thinking that is so awful. And you know, when I got back from Russia, we COVID hit, so I had time, and I literally wrote my book because I thought all the things I said, I'm never gonna tell anyone that I'm never gonna tell, and I did. I wrote it, wrote it all down, rose tinted my story, and it just I've had people email me and say there was one chap in America and he said, I've not told my wife because I'm scared. And I'm like, oh my gosh, how do you? And I've had other people email me and contact me, and and I now get phone calls and saying, My friend's just been diagnosed, not necessarily with MS, but with something, will you speak to her? Because it's it's so scary, and it is it's really frightening because as humans we see worst-case scenario, and I did, and that's why I went, yeah, what's happening? But yeah, actually, with my honesty came my power, and it was only when I went, okay, yes, I have got this, and yes, it might be awful, but I'm gonna I'm going to own it.

Mel:

And it's I mean, that it's someone that's done it already, but it's uh it's such a difficult thing, and I it's empowering, yeah, so empowering because when you bring something that's been kept in the shadows and in the dark, a secret or or something that's heavy, yeah. As soon as you bring it out into the light, it no longer holds that power over you anymore. And all of a sudden you're in control and you run the narrative, and you go, you know what? Okay, I can't change this thing, but I'm gonna change this, this, this, this, this, and I'm gonna make my life the best life it is, and I want to bring everyone along with me. Like, yeah, you know, it's not keeping things away from everyone as well. It's like, okay, let's all go on this journey together.

Kezia:

Yeah, and and people were amazing. My clients were fantastic, my family, obviously, my friends, and then people I didn't know. People literally are amazing. And it was, you know, when I was telling people that suddenly it thinks that there is a lot of good in the world, and it's only when you ask and are willing to share, you know, your difficulties that people open up to you, and it was you know one of the best things I've been doing to be honest.

Mel:

Oh, that is so beautiful. So oh my gosh, the time goes so fast, this is crazy. But if you were to give just one bit of advice to a woman out there who might be diagnosed with something that is incurable or something that is gonna gravely impact her life, what would that advice be?

Kezia:

I would say uh, you know, don't be uh scared to ask for help. It takes a strong person to actually say, Look, I could do with some help. Because that's it's so difficult because we are women, especially, apologies if I'm being sexist, we are like, we can handle everything. But it's okay not to be able to handle everything, it's a stronger person that can say, Look, I could do with some help right now.

Mel:

Yeah, I think that's really wise, very wise. So if people want to get in touch with you, want to get a hold of your book, where can they go?

Kezia:

Um, if you go onto Amazon, it's rose tinted my story. Um, and if you I think if you type by naming, because I've done a few different bits, it's Kezia Kitschibash. Um, and you can find me on Facebook, I think I'm on LinkedIn, um Instagram is under Kellebeck, which is my therapy business. So you can literally if you put all the links in the description.

Mel:

They're all everywhere. I'll put I'll put them all in there so people can find me. But the main thing is looking up in your country, wherever you're listening to this from, looking up your Amazon and finding her book. Oh my goodness, I have really enjoyed talking to you, and I wish we had hours. I wish we had hours to talk. You are an incredible woman, and I just I want to say sort of on behalf of everyone, I know I can't speak for everyone, but on behalf of everyone, thank you for being so vulnerable. Thank you for sharing your story because you may not realize just how many lives you seriously impact from what you've gone through. You've you've turned something really difficult into something that could literally give life to people. So thank you.

Kezia:

Oh, that doesn't mean an awful lot. No, it's been an absolute pleasure.

Mel:

Oh, you're so welcome. Well, I'm gonna have to get you back again one day because I'm gonna want to hear the updates on everything, and I'm sure the audience is gonna want to hear it too. So thank you so much for coming on today, and I look forward to seeing how your story continues. Amazing. Thank you so much.

Mel:

If you like this episode, don't forget to hit subscribe so you don't miss what's coming next. And if you want to continue the conversation, you can connect with me on Instagram @shes.organised or for some free resources, head over to beyondorganised.com/ toolkit. Remember, organising is a tour to live the purposeful life of beyond it. See you next time.

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Amy Dave

Host
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Mel Schenker

Host
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Kezia Kecibas

Guest