The Life Of Bryony - "He wasn’t choosing to shorten his life—he was choosing to shorten his death." Lottie Clarke on the Fight for Assisted Dying

Episode Date: November 18, 2024

Welcome to The Life of Bryony, where we tackle life’s toughest challenges head-on. GUEST: LOTTIE CLARKE In this deeply moving episode, Bryony Gordon speaks with Lottie Clarke about her husband James’s devastating motor neurone disease diagnosis and his decision to travel to Switzerland for an assisted death. Lottie shares the emotional toll of supporting James’s choice while navigating the complexities of family life, grief, and a system that left them feeling powerless. This is a powerful story of love, resilience, and the fight for the right to choose a peaceful end. Lottie’s courage highlights why open conversations about death, dignity, and autonomy are so vital. Get in Touch 🗣️ If you want to get in touch, I’m only a text or a voice note away! Send your message to 07796657512, starting with LOB. 💬 WhatsApp Shortcut -https://wa.me/447796657512 📧 Or email me at [e-mail] For More Information and Support: We discuss motor neurone disease, grief, and assisted dying in this episode. If you need support or want to take action, here are some resources: Motor Neurone Disease Association (MNDA): www.mndassociation.org My Name'5 Doddie Foundation: https://www.myname5doddie.co.uk/ Dignity in Dying: www.dignityindying.org.uk Samaritans: www.samaritans.org If Lottie’s story inspired you, consider writing to your MP to ask their stance on the Assisted Dying Bill, which will be debated on November 29th.  Bryony xx Learn more about your ad choices. Visit podcastchoices.com/adchoices

Seriously popular. Welcome to the life of Briney where we are not afraid to tackle life's toughest challenges. Today I'm honoured to be joined by Lottie Clark, who tells me about her husband James's motor neuron disease diagnosis and his decision to go to Switzerland to Dignitas for an assisted death. At that point when someone's telling you that they're going to travel to Switzerland to end their life, you can't ever envisage that day coming. You just can't. Lottie's story is about love, loss and the right to choose a peaceful end.

Coming up after this. to this. I was very relieved to find that I am not alone, certainly not at this time of year. There was a news story, some scientists, I don't know why they don't have more important things to be doing, but they have done some research of 2000 people and they have found that most people, they just want to stay in. They want to stay in in the winter. The ideal time to get home for a night in is 5.30pm, which sounds actually quite late by my standards. Apparently this gives you just over an hour until you should be settled down on the sofa by 6.42pm. According to the researchers, you would have a 19 minute shower or bath. That's quite long. I don't know. I couldn't have a 19 minute shower but I

could definitely have a 19 minute bath with X and salts. Anyway, putting on slippers, making a drink are among the first things you should do before settling down. I heartily approve of this. And the study showed that more than half of respondents would rather spend the night in by themselves than go out and two thirds, yes people, you are my people, two thirds are actively cancelling plans to enjoy some alone time. I read this in a reputable newspaper, okay, and all it did was sparked a sort of feeling of relief in me that I will be able to RSVP to this Christmas party invitation and say, sorry, I'm busy. I don't have to tell them what I'm busy doing.

I don't have to tell them that I'm busy at home, in the bath, having some alone time. But this also got me thinking about what if you do have to go to a Christmas party and you're like just sober? Because actually I remember coming out of rehab at Christmas. I mean, it's never a good time to come out of rehab. Never a good time to go to rehab. But Christmas is particularly challenging and that made me think, oh, maybe I need to do an episode

on being sober during the party season. Would you like to hear that? Anyway, I hope you have a very merry Christmas, but don't invite me. This episode is brought to you by RBC Student Banking. Here's an RBC student offer that turns a feel-good moment into a feel-great moment. Students get $100 when you open a no monthly fee RBC Advantage Banking account and will give another $100 to a charity-great moment. Students, get $100 when you open a no-monthly fee RBC Advantage Banking account and we'll give another $100 to a charity of your choice. This great perk and more, only at RBC. Visit rbc.com slash get 100 give 100. Conditions apply. Ends January 31, 2025.

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Additional terms apply. If you're enjoying the podcast, hit follow now to stay connected and never miss an episode. So this week, I have found myself thinking a lot about how we as a society avoid discussions around death. We know it's inevitable. In fact, it's the only thing we're all going to do. Yet we rarely talk openly about it. And today I am chatting to Lottie Clark about her husband's diagnosis of a terminal illness and the stress her family went through to ensure that he was able to die on his terms.

But they still weren't quite his terms because obviously they couldn't be with him. As we record this episode, Parliament is gearing up to read the assisted dying bill next week. If it passes, it will allow terminally ill adults in England and Wales who have six months or less to live to choose a more dignified end. Lottie's courage in sharing her story shows just how important it is to have choices at the end of life. Lottie, I'm really happy that we've met. I'm not happy the reason that we're here to talk about. You come on to talk about assisted dying.

Yeah. Earlier this year, your husband James went to Switzerland where assisted dying is legal. And James was diagnosed with motor neuron disease in 2021. And so he took himself to Dignitas. Yeah. And you very generously come in to talk about your story. And I want to go way back to the beginning, because I've heard a bit about James and his

dodgy tattoos and things like that before we got started. It's just the start of it. But I want to know, how did you and James meet? So we worked together. We met in 2003. We both worked for Foxton's back of the day when the yellow and green minis. Did you both have them?

I actually did, but he was too senior. He did, yeah. Or did he have an Aston Martin or something? Yeah, he had like BMWs and then like an M3 BMW with a roof that came off. Wow. He was really quite attractive. In the Foxton's livery or just?

Yeah, it's called a supercar. You had to hit your targets to get to the top. Wow. I know. Okay. He didn't have that when I met him, but you know, he was on the right trajectory. And he was really quite attractive. He was really hot. Yeah. So because it was a state agency run by an amazing guy called John Hunt, and it was very target driven. I fell into it and so did James. Neither of us went to university and we just ended up there.

And we both hit our target for that quarter, which was a trip to Atlantic City in the US. So we used to have a leader board meeting on a Friday night where you'd have to call out your figures. I mean, it's just so cringy, isn't it? Very naughties. Yeah. So we'd hit our targets.

It was a mad scramble to get to Gatwick to catch the flight and I clocked him at check-in I thought oh, who's he he's quite nice And I basically followed his head on the plane for the trip across the Atlantic and then we had a coach I picked us up in New York and by that time I think you know a good couple of bottles of vodka down between us Rocketman came on and he basically sang karaoke on the coach. And I was like, that guy's amazing. I need to get to know him a bit better. I mean, sang it really badly. Right. Okay. Good to know. And then it was his birthday. I ordered him a birthday cake in the Hard Rock Cafe. And

then you probably don't want to know the rest. But yeah, it was- I really do, actually. I mean, it sounds like classic way that we used to get together with people in the North East. Exactly. Yeah, in our mid-30s. In our mid-30s. We went out, we got pissed. I'm not speaking for you, Lossie, but this is how I met my husband, got pissed, fell into bed, and the rest, as they say. Exactly that, yeah.

And I think we used to work hard and play even harder, didn't we? It was, there was just great days. I have such fond memories of that time in my life. And James did too. I don't remember what our pressures were, there must have been, but it's sort of all blurs, doesn't it, by the time you get to our age. They were just great days, you know, just full of friendships and laughter and yeah, no stress, very little stress. So how long were you, did you move in together, when did he propose? So he had recently ended a relationship.

I think I was ending a relationship, maybe a slight gray area there. But I was living with girlfriends. He had his own place. I was just buying a flat, which I bought and pretended to live in, but I actually really didn't. I ended up living at his pretty early on. And we just fell in love quite quickly.

I think he proposed to me maybe six months later, and then we were married maybe nine months after that. Wow. So we got married in 2005. And what was the proposal like? Yeah, it was romantic. So I'm a big skier.

I used to, I did loads of ski seasons when I was deciding what to do with my life back in the day. So we went to Val d'Azur. It was actually just the two of us, and he fell over and hurt his ankle quite badly. I had no sympathy at all for him. It's just irritating. So I headed off up the mountain one day. He'd been behaving a bit strangely. And then he called me and he said, I'm coming up to meet you. I've had loads of neurofine. It'll be fine. I said, well, I really don't think you should. You

know, it's really sore. No, I'm coming up. I'm coming up. So I met him at this chairlift. We got on the chairlift and he said, I've got something to ask you. Will you marry me? And I was so excited. I said, of course I will, yes. And then I got off the chairlift and I just skied off and left him because I was so excited and forgot that, well, A, he was a really crap skier and B, his ankle was really bad. So I. Just want to marry you.

Goodbye. Exactly. So yeah, that was that. And then you followed the normal trajectory of a married couple. Yeah, we did. You have three children. Goodbye. Exactly. So yeah, that was that. And then you followed the normal trajectory of a married couple. Yeah, we did. You have three children. So you must have had quite quickly Martha. Yeah, so Martha was born in 2008. Olly was born 60 months later in 2009. And then our third was born nine years after that. So she's a, there's a big, a big gap between them all.

By the sounds of things, you had a very like, you're both very active. He liked running marathons. Yeah. Sport for him was a real release. So he would always when we lived in southwest London, jump on his bike before the kids were at bed and he'd go and do laps at Richmond Park, you know, one of those mammals. I mean, I never understood it. I still don't.

But for him, it was a real release. And it was, you know, work by that point was, we'd moved from the days of it being great fun to suddenly you have a whacking great mortgage, you have young children, you're sleep deprived and work is quite serious and it's about providing for a family. So that was really, yeah, it was his release. He'd just jump on that bike and he did a marathon and he'd played a lot of squash and just, yeah, loved being active.

When did you first start to feel that perhaps there was something wrong or he was unwell? I don't think I ever... He was very much ahead of me in terms of all of that. I look back on it, I think. Was that because he was really scared that he knew deep down there was something really wrong with him and he wanted to sort of protect me from that? Or was it just that to me he really seemed fine? So the first symptoms were I remember he was by this point, you know, that the kids were growing up, we'd moved out to Hampshire. He was commuting into London, he had a job that he really, really loved. It was a big job and he spent had a job that he really, really loved. It was a big job and he spent a lot of time at work and he wasn't getting younger and that

commute was hard. And I think I just thought, he's just exhausted. He's emotionally absolutely exhausted and physically too. And he said, I really need to stop looking after myself. I'm just not feeling great. And James is one of those people that he'd have a Christmas where he'd just drink and be merry and have a great time, but he'd never do anything in moderation. So it was always like, right now I'm not drinking, I've given it all up and I'm now not drinking

for three months and I'm jumping on my peloton every day. And so I just thought, okay, he's about to do that again. And he was cooking in the kitchen and I remember him getting his fan out, he said, I'm videoing this because my grip is so weak, I can hardly hold this pan. And I said, that's weird. What do you mean? He said, I can't describe it to you but I can't hold this pan. It's really hard to hold. And I just sort of just thought it's a bit strange. I didn't think anything more of it.

And then a few weeks after that, he was working from home and I said to him, let's just take the dog out for a quick walk. You need a bit of break. You're being a study all day. And he had a work call whilst we were walking and his voice suddenly broke in this really strange way. And he looked at me and I looked at him and we both got the giggles and he sort of, you know, he's been very professional and hung up the call. What was that about?

And I said, that was really odd. I don't, he said, oh, it happened the other day. Anyway, didn't think happened the other day. Anyway, didn't think anything of it again. And then a few weeks after that, he was doing a big presentation at work in front of a few hundred people and the same thing happened. And he said, there's something not right. I'm a bit worried. I'm going to go to the doctor. And he had some tests called EMGs, which is basically to measure the signal going from your brain to your muscles. And they came back, and they were unremarkable,

was the word they used. So that was fine. We carried on. By this point, it was July. The borders were just opening up again after COVID. Do you remember that second sort of weird Christmas lockdown thing? Yeah, so it was like 21, 2020, 2021.

It's 21, exactly. And so we were just so excited to be able to jump on a plane. So we just booked a quick week to Ibethan and jumped on the plane. And when we're out there, we couldn't get a, we'd been to this gorgeous beach club for lunch, we couldn't get a cab back because of the five of us. And he said, you guys jump in that and I'll walk back to the hotel. I don't think it was particularly far, but when he got back, he said, I'm so out of breath.

I feel really odd. I need to follow up with that neurologist when I get back. We got back, we went out for the night with some friends. We had a brilliant evening. He didn't really drink. I remember England were playing, it was a big match. We got home, he spoke to me and I could barely understand what he was saying, his speech was so slurred.

I said, how much have you had to drink? He said, I've had two gin and tonics. I told you, this is serious. And at that point, I knew deep down that something was seriously wrong. And that I think was the first time for me that I thought I've got to listen to this. Like what's going on?

So by September, he'd gone back to the neurologist and actually had this incredible life coach called Amy who became a huge integral part of his life. She just used to sort of help manage his work balance really. And she said to him, I'm sending you to his ENT specialist friend of mine because if you're worried about your vocal cords and... So off he went to see this guy and he put a camera down his throat and he said, no I don't like what I'm seeing. You're going straight back for some more EMGs

and back to the neurologist. And by the time this happened it was the end of the year. So he had that done and by this point he'd had so many tests and it had been going on for so long and everything's so drawn out that I didn't go with him and that along with not being with him when he died will always remain one of my biggest regrets. That he called me from, I was getting ready to go to one of the kids carol concerts and he'd gone on his own because we just thought they were going to say again, we're not sure what it is, we'll do some more tests. And he walked into the neurologist office and the neurologist, the same neurologist who had told him three months before when he'd gone in and said, I think I might have motor neurone disease. And he'd said, I can categorically tell you, I've

been doing this job for 30 years, you do not have MND. He walked back into that neurologist office and he said, I'm sorry to tell you, you've got motor neurone disease. And that was that. How old? So he's 42. Yeah, really young and really fit. Ironically, you know, I can't say healthy because he wasn't healthy, but he was. Like you'd look at him and he was the picture of health. So can you explain what motor neurone, just for anyone listening who doesn't know what motor neurone disease is? So motor neurone disease, MND or ALS as it's called in America, in Europe as well, in some parts of Europe,

is a neurodegenerative disease which essentially stops your brain sending signals to your muscles. And so they start to weaken and they then start to die. It can start in many forms. For James, he had very strong legs because of all of his cycling and his running. So he didn't notice a limp or that one of his feet was dragging. But for him, it was his voice, it was his vocal cords that were affected, and that was the thing, and his hands and his fingers. So they don't know what causes it. They are trying very hard, but it is so underfunded that we are sadly many years away from finding

a cure for it. I think it's probably the worst disease you could get because there is very little hope for anybody that's diagnosed with it. So the doctor told him that he had motor neurone disease and presumably when you get a diagnosis like that you want to know how long you've got. Yeah. But is it like asking how long is a piece of string? So he didn't do, he didn't ask that question there and then. I think he had already, he'd self-diagnosed it months ago and weirdly I think, although it was horrific. I think he had already, he'd self-diagnosed it months ago and weirdly I think, although it was horrific, I think he knew that that was what they were going to tell him. So he didn't ask that question then. What they did say is, you need to go

away, you need to have some genetics screening if that's what you want to do and we also need to do some just further tests just to narrow out the possibility that it could be Lyme's disease and at that point you to narrow out the possibility that it could be Lyme's disease. And at that point you're hanging on to everything that it could possibly be Lyme's disease. We then went into Christmas. We managed to get a quick appointment with the neurologist and we went to see the neurologist then about, I think it was like the 22nd of December or something. And James said to him, then

I need to know how long have I got. And he said, girlfriend, do what you can in two years. Do as much as you can. And so that was, that was hard. And that must have been nightmarish. Yeah, it was. I mean, I don't think we slept a lot. I remember we didn't want to be apart from each other. I think he'd arranged to go and watch. He's a massive, sorry, Chelsea supporter, Brian. And only our son is, and they'd arranged to go and see Chelsea. And we were adamant that, you know, life should really continue as normal. So we went to do that.

But I remember they're staying in a hotel that night. And I was just like, oh, can you just please come back? I just want to hold you. And he was like, I know. I can't bear to be apart from you. So yeah, those weeks were dark, really dark. And also, because we didn't know the true extent of what we're dealing with, and yeah, it was 90% sure that that's what he had, but we weren't able to tell our friends

and family. So we literally told about four people just because our behavior was strange, you know, we'd suddenly retreated and we weren't the sociable people that we were and we were saying no to things. And, you know, we literally looked like we were shell shocked, we were, we just wandered around in a state of shock. So February comes and you find out the extent. So February came and we were told what we knew, that it was confirmation and I think in a way that was maybe like okay okay, well now we need to plan. There's no more shifting patterns here.

This is what it's going to look like as much as we can. James at that point was getting worse. Definitely within those sort of couple of months, it was far more noticeable. Not to people that didn't know him well perhaps, but you know, to people that knew him well. He just lost his confidence hugely and became really anxious and anxiety and james were never two words that you would put together. So he at that point he was always very organized and he loved to plan. So he sat in his office and he worked out what he was going to do. So he wrote cards and letters to the kids for each of their birthdays, wedding cards. He spoke to

the life insurance companies, he spoke to work about his future and how that was going to work and he made some pretty horrific decisions that at the age of 42 you really shouldn't have to make within those four weeks. And actually we led quite separate lives in those four weeks because he would literally go and lock himself away in his study and I would just, you know, carry on with my day. So we sort of were processing our grief a bit separately I think at that point in time. And then after that we knew we had to break the news to the kids. So we sat down with them and we said, look, you know, dad's been given this diagnosis. Sadly, the outlook is not good, but we always have hope and we've, you know, we must believe in that and that there are trials and James is a fighter as well, so he was going to go

for it, you know, whatever he was offered, he would grab with both hands. And yeah, so we broke the news to them and it seems like a very long time ago now, that conversation. And I don't know if they'd, I should probably talk to them about how they remember that conversation because it's probably very differently to the way I remember that conversation. Did you, did you get advice on how to do that? Because that's just an impossible thing to have to do. We did a little bit, but I think you know as a mum that nobody knows your kids as well

as you do. So it had to just come from us and I don't think there's any right or wrong on it. And I'm really learning to trust my gut. That's something that over the last two and a half years has been put to the test. And I think you just go with what feels right for you and your family. We didn't tell Matilda who at the time was six I think you just go with what feels right for you and your family. We didn't tell Matilda, who at the time was six, it was just too much. I think she wouldn't have understood that. And that really was the start of our new journey together as a family on that, you know, that pathway of terminal illness. But, you know, whilst I sit here saying that, it wasn't all tears and doom and gloom from that point.

You know, I really want people to know that there was so much laughter within the months that followed that. Yeah, sure, there were huge amounts of tears and there were times where the darkness was unbearable, but we laughed so much, you know? And there were really good times. I'm glad, and I'm glad that you can see that.

I'm listening to you and, you know, like I imagine the process of being given a diagnosis like that and then you mentioned the stages of grief. Yeah. And I guess it's the acceptance that life is not going to go, I don't know about you, but you know, there's a certain age where something similar happened to a friend of mine recently and they said that it's like every problem they've ever had before there's always been a way out of it and they said it was like this is the first time in my life where it's like there is no way out of this this is just terrible this is just holy shit holy not holy as in yeah religiously

Holy shit. Holy, not holy as in religiously. Yeah, W-H. Yeah, holy shit. And I'm sure this isn't helpful at all because it's like nothing anyone says is helpful, is it? It's like nothing changes what you've been through. But the human ability to adapt to the most horrific things is truly incredible. I'm a changed person because of this. And our family is a changed family because of this. Up until that point, we had led a really blessed life and we still do lead a really blessed life.

We are very, very lucky in so many ways. But it does change you. And does it change you for the better? No, I don't you? Does it change you for the better? No, I don't think it can ever change you for the better. But I think I'm a different person. I remember people coming up to me saying, and they still do, you're so brave. You're incredible. But I think when you don't have a choice, like bravery is not something which is, it's not an option. It's like, well, I'm a mom and I've got three kids. So yeah, you kind of hope that I would be brave, right? You know, you put one foot in front of the other

and you crack on. You know, life is very different. It's brought about a change in me. I look at myself very differently now. And I wish that he was here to see all of that. Cause I think he'd actually really quite love the new me as much as he adored the old me, but I know he sees it. I love the new me as much as he adored the old me, but I know he sees it. How can you be sure your child is making the right decision when choosing a university?

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before it ghosts you for another year. Chicken from Popeyes, before it ghosts you for another year. So James sat down and made some difficult decisions. And one of those decisions was that he didn't want to be seen off by. That sounds like a terrible phrase. No, he wanted to choose when it was his time. So going back to that neurologist's appointment when he got the results on his own, he called me and he said, I've got MND. And the following sentence to that was,

I need you to know that I will not see this through to the end. He said, I'll fight for you and I'll fight for the children. And I'll be here as long as I can be here, but I need to see this out on my terms. And he said, I've signed up to Dignitas and he literally did that on the train on the way home. He made inquiries. And how did that? Oh, it was a filthy word to me. I honestly blocked it out. I just, I discredited it immediately. It was something that I wasn't even going to entertain. But also, yes, he was gravely ill, but he didn't look it. And he, you know, at that point when someone's telling you that they're going to travel to Switzerland to end their life,

you can't ever envisage that day coming. You just can't. So that was in the winter of 2021, 22. Yeah. And as you said, his symptoms started to get worse. You very much still... He had adventures. Yeah. So once he'd written his cards, at that point, he'd step back from his role.

And he grieved. That was a huge part of who he was. He was incredibly driven. He loved people. He was an amazing manager. And he found that really hard. And so I just said to him, we can't sit around here. We need to make some memories.

Financially, we were in a fortunate position where we could do that. And so we just started to travel. And I don't mean, he felt quite anxious. So it wasn't going to India. It wasn't going on safari. But we just went where. We went to America on a big road trip

and traveled out to the Caribbean. We went to America on a big road trip and traveled out to the Caribbean. We went to loads of different places in Europe and he did a, he bought a crazy car and went off with his boyfriends whilst he could still drive down to the Alps and behave like idiots for a few days. You know, all that stuff that he wanted to do. So we started doing that and I just sold it to him as early retirement. I was like, we're just going to take early retirement. That's what we're going to do. And we did. And we did that for as long as we could do that. And there were periods when the disease definitely seemed to slow down. And again, interestingly, I'll never know whether that was because, for example, when we're in California,

he was in a great place mentally, as much of a great place as you can be when you've been given a terminal diagnosis, but the best place he'd been in since his diagnosis. And I don't think you ever really forget about it, but there were definitely moments where you could pretend that everything was normal. And the disease really, I think, about two to three month periods seemed to just slow. Wow.

Because I've seen pictures of him, of you, in California. Yeah. And him on a bike. He could ride a bike then. Yeah. You wouldn't look and think that anyone in the picture was suffering from a terminal illness. Yes, he managed to do all of that.

And actually at that point he was still driving. And so that summer passed and then we continued to travel. We had a great time. He'd go to every sports match with the kids because that was his thing. So he said, I'm not missing a single match. He'd do all of that. And that was amazing. And then it really started to ramp up. He then started to really struggle with his swallowing. He

was adamant that he wouldn't have a feeding tube. We used to go to hospital appointments and they were so hopeless. It was no fault of the neurologists or doctors, but there's nothing they can do. So they'd literally say, how high can you lift your arms? Stick out your tongue. And that was it. It's like some 1930s. It's so basic. So we decided that we'd knock all of those appointments

on the head, because actually that was more triggering, going into those hospital wards and seeing neuro diseases progressing. So we knocked all of that on the head. And then we cracked on, really. And then he had a really bad fall, and that was when things changed. So his swelling went. He had a couple of really horrific choking episodes where it was high minute manoeuvre

and we nearly lost him. And then this awful fall where he fractured his jaw and broke his fingers. And driving back from the hospital there and I said, right, things have changed now. At that point he couldn't drive anyway. And I just said, look, you know, I'm now your carer. I'm going to have to take you to the loo. I'm going to have to feed you. And so life from that point, I think, got really hard for him because he'd always said that I'm going to Switzerland when my lines in the sand are when I can't go to the loo myself, when I can't feed myself. And yet we crossed those lines and he was

okay. It was all right. It was OK. So when was this? That was just over a year ago. Because this is obviously something when you make the choice to die at somewhere like Dignitas, you can't just kind of go off there next week. Or this is something that has very strict laws in place

in Switzerland to make sure that you are of sane mind. So you have to make the choice before sometimes you're actually ready to die, I imagine. Yeah, that's right. So he kept saying to me, the window is closing. And by this point, he'd been drip feeding me Dignitas. And I'd accepted, I guess, that that was what he was going to do. And that he wasn't going to change his mind. So we went away for final time that Christmas and it was really, really tough. By this point, he was quite disabled, so he was using a walker to walk.

He couldn't feed himself, he couldn't turn over in bed. Life was really difficult for him. And there was less than... Yeah, but I'd have done that for forever. You do when you love somebody, don't you? The scales were tipping. You know, the balance was definitely like, there's less enjoyment here, and there's more pain and suffering.

And we went away. He had a fall, two falls, lots of away. And unbeknownst to me, he at that point emailed Dignitas and said, I need a date. And then we had an amazing Christmas together. She's a family, knowing that it would be our last one. Even though I didn't know he was going to family, knowing that it would be our last one. Even though I didn't know he was going to Switzerland, I knew it would be the last one. He wasn't going to see another Christmas through. Yeah, he broke the news to me in the New Year that he got a date, and that date was April.

So suddenly we were looking at a clock. And I can't, I mean, to ask you the question, what was that like, seems so fucking futile and stupid. I don't even really remember it. I think I've blocked that part out along with other things that, yeah, I just, I think it would be too traumatic to deal with. I just remember thinking, right, well, we need to enjoy the time we've got left. And then you just, and like everyday life continues,

right? I mean, your teenagers are still teenagers and they still want to take into a party and they're still pissed off because you didn't get them the right serial brand from the supermarket, you know, even though their dad's about to travel to Switzerland. On that point, obviously, you couldn't be there when it happened because there are strict laws still in this country, which currently if you are found to have assisted someone in dying, you can spend up to 14 years in jail. Now, no one's ever been, no one's ever actually been imprisoned for that, but people have been arrested. And obviously that's not something that James would have wanted for you to have to go through on top of his death. So the start reality is you can't be with him when

he's dying. Yeah, that was. And we looked into it and he made lots of inquiries with lawyers and we were categorically told that you can'tottie, can't be anywhere near you when you pass. And actually, I really battled with that. And then I thought I'd made my peace with it. And then about a week before he was going, I just said, I'm coming with you. And he said, you can't. He said, you can't. The kids are losing their dad. They can't lose their mom too. That's not, you know, if the law decides to make an example out of you, then, you know, there's three kids there with their parents.

So, yeah, that was, that was hard. So how did last? So we, the last few weeks, I, I'd arrange, he said, I want you to put some flights to go skiing. This was like months before with the kids. Take the kids skiing. You know, I'll be all right. We can get a care in. Mom and dad will come to look after me, whoever. So we booked these flights.

And as we got closer, school holidays loomed. And I said to him, what do you want to do? We'd broken the news to the kids that we were honest with them, that he was going to dignitas and not to Matilda, because that was just too much for her to understand. So the narrative to her was very different. But we'd said that, you know, he's going to Switzerland in six weeks. These are his wishes. And they were really good about it. They understood. But don't forget that by this point, we had lived with the degeneration of his body and

James wasn't who he was. And he'd, I think once he'd booked that date, he'd given up the fight. So they were accepting that he didn't want to see it through to the end. You know, he was really poorly and very weak by this point. And they knew, I think then what the last months of MND looked like. You know, they'd seen Rob Burroughs when I'd run the marathon up in Leeds the year before. And they knew, they knew what was coming. Friends organized his travel out there and a very dear friend of ours took him out to Switzerland and we decided that we'd go on one last blast. I said, do

you think we could get you up to the Alps? We're going back to Val d'Azur weirdly and because it's where we got engaged, my children never learned to ski, I said, do you think we can get you up there? He's like, you're crazy. Look at the state of me. And I said, we can do it. Come on. So between us and our amazing network of incredible friends, we got him out there and we got him up the mountain and we had a week together, which was really hard, but I'm glad we did it and I think he would be glad he did it.

And he watched Matilda learn to ski. He watched Matilda learn to ski. And then we came back and we had 10 days and I couldn't tell you what those 10 days looked like. All I can tell you is that we, I don't know what he ate the night before he left. I just remember we sat and watched TV together and that night we just, well he couldn't hold me, I held him tight. And then we woke up the next morning. He'd made photo books for the kids, which, sorry, he made these gorgeous photo books for the kids whilst he'd been ill and he put them away in this big memory box. So we got those out and we sat and we

went through those for an hour or so and laughed and cried and there were lovely memories and that really nice memories and then his left arrived We hugged him goodbye and Matilda clung to him and said, you're not going to be around to watch me start my new school daddy. And he drove off. Well, he didn't drive off, but he was driven off. And throughout his illness, that was one of the things I worried about. How would I watch him being driven out of our driveway

and, you know, not being able to go with him? I don't think I'll ever recover from that. I don't think my kids will ever either. And I think that is why things need to change. He had to go before he was ready, you know, because physically he wouldn't have been able to travel. And actually, when you're terminally ill, those last few weeks can be really crucial.

So Martha then went two weeks later, she turned 16 and she started her GCSEs. He could have been there throughout those if he was allowed to die here. And he could have watched another cricket season with Ollie. And he could have, maybe that's wishful thinking, but maybe he could have seen Matilda start her new school. Who knows? But he couldn't take that risk, Briannie. And that is why I don't want anyone else to have to go through that.

I think that things need to change. I think it's archaic. It is archaic. Yeah. I'm so, so sorry you had to go through that. Thank you. I'm sorry too. I'm sorry for crying.

I'm yet to start my therapy. We're just... Grief is something you need to go through. Yeah. Therapy doesn't always like... No. This is probably my therapy. You're probably my therapist now.

Sorry. You know, it can't hurry you through something. No. he doesn't always like, this is probably my therapy, you're probably my therapist now, sorry. You know, it can't hurry you through something. And I think this is a subject that we really do need to talk about because it can make the difference to people in such a really significant, important way, you know, the way that you are able to spend your final days, if that is something you know is going to happen. The difference that can make as well to the people around you. I'm just so sorry that you weren't with him and that you had to say goodbye to him.

I'm sorry that you had to say goodbye to him at all. Yeah. But you had to go through those moments of seeing him go and the pain of that, you know, of not being able to be with the person you love as they go. I think just to hold his hand. You know, the kids might have chosen not to be there and that would have been fine. But it's all about choice, isn't it? We live in a society where we should be able to choose things like that. He wasn't choosing to shorten his life, he was choosing to shorten his death,

which was ultimately very close and he was in so much pain. I understand, of course, I understand the arguments against, but there are ways, I think, of protecting the vulnerable. Yeah. It has been happening in other countries successfully for many years without repercussions.

And I think it's time that that happened here now. And there needs to be some change. James couldn't just be driven away and go to Switzerland. He had to have psychiatric reports done every six months. He had to not be on any antidepressants, you know, I don't think he was even able to be on sleeping pills. He had to be a sound mind. He knew what he wanted. And it wasn't for anybody else to tell him whether that was right or wrong in a body that was failing him in the way it was. And his last thing, one of the last things that he asked you to do was to campaign on this.

Yeah. He didn't ask me to campaign, but he was such an orator. And when he was diagnosed, he set about fundraising and he raised over a million pounds for My Name's Doddy, which was amazing. And that was kind of who James was. If James wanted change, he'd get change. So My Name's Doddy is an MND charity that you can all go and donate to. We'll put the links in the show notes in James' memory. Can I just say, a million quid is quite a lot of money to raise in quite a short space

of time. Yeah. I mean, like, that's incredible. But that was who he was. That kind of sums him up. You know, that million quid was who he was. He never did things by half. It's like, I'm not just going to raise 50 grand.

I think he got, I don't know, he got to a point where I think he'd raised 100 and he's like, I'm going to do a million. I was like, really? He said, yeah, I'm going to do a million. And he did. And so now his wish is that this law changes. And I really hope that it does. I'm not a campaigner, but what I do know is that if people are listening to this and they do want change, then write to your MP, ask them their stance on it. Please get behind it. Ask them on the 29th to go to parliament and to vote

for a change. So there is a vote happening on the 29th of November. If you're listening to this the day it comes out, that's in just over 10 days. So you can write to your MP, press pause on this podcast. I wouldn't usually tell you to pause this podcast, but maybe, yeah, go and write to your local MP and you can just say to them, dear MP, where do you stand on Assisted Dying? Yeah. Yours, whatever your name is.

You probably don't even have to put your name. I think you do and your postcode. And your postcode. Because I've done it. Okay. Where do you stand on it and why? Challenge it, you know? Yeah.

I do know one that's changed his mind already. Okay. So, where there's a will, there's a way. If nothing else, let this be a way for us all to start thinking about this really important subject that affects all of us, you know, whether we like it or not. And, you know, you said earlier

that you don't have any choice to be brave, Lottie, but that doesn't stop me from telling you that you are incredibly brave. And I'm incredibly grateful for you coming into this studio and reliving some of the most terrible moments of your life in the hope of changing things in James's memory. That is an awesome, beautiful thing to have done and I'm really grateful for your honesty and your vulnerability and I'm really grateful for your tears as well and that you felt able to shed them. I have shed some too. I was going to say fingers crossed there's a change in the law. That seems pretty fucking pathetic. Lottie Clark, thank you so much. We will put links for more information on all of the subjects

that we've spoken about in the show notes for anyone who has been affected by any of the issues or wants to know more about motor neurone disease or wants to know more about how they can read about the proposed change in the law to allow assisted dying. They'll all be in the show notes. Lottie Clark, thank you so much. I just want to send love to you and your wonderful three children. And thank you for telling us about James. Thanks, Bryony. I really want to say a huge thank you to Lottie again for sharing her story. And what I really wanted to get across to listeners is that as awful tragic as it is. I was really struck by how just lovely Lottie was

to be around, her energy was really good. And I think this is the thing that really strikes me about people who have either been through terrible things or who are going through terrible things is that we can be scared to sort of talk to them like normal human beings and I think this goes back to the earlier point about why we don't talk about death but what Lottie proves to me is that it's actually it's far better to have these conversations than not and

you might be surprised if you're scared to talk to someone that you know or love about these subjects you might be surprised by what happens when you do. And I just want to kind of leave you with that thought. We're back on Friday with Dr. Catherine Mannix, a palliative care doctor who is going to answer all your questions about dying. Honestly, it's not scary. It's actually a really lovely chat. I'll see you on Friday.