A coming of age story about a girl accepting her health condition, pushing herself and eventually walking the Himalayas.

Recorded in a pub garden in Kent.


[Carys]: Do you want to introduce yourself as well? So you see you can introduce yourself however you want like, you know “I’m Carys, I’m an Aquarius” or whatever you want to say you know like… Do you know what I mean like the title, if your story was a film, what the title would be kind of thing.

[Sophie] Oh, so I’m Sophie Spencer, and it was my journey of accepting my condition and pushing myself in India, and walking the Himalayas. It’s so much pressure… I don’t know.

[Listener]: Take it easy though.

Yeah I know. I’ll have a drag, and then see what I can think of.

[Listener]: That’s the point, you pass them out so you can get all the good stories… I get it.

[Carys]: Yeah exactly. And because, you know, that’s what people do: smoke and tell stories and stuff…

[Sophie]: Ok we’ll just do a round rough of how I got like, I don’t know, me. So like, my sister is severely disabled. She has no communication, she uses sign language. So I’ve been brought up in a world really unique to everyone else’s and I feel like it’s such a privilege. And then one day I was on the school bus and then I just collapsed. Like it just happened like that. And then I was struggling to breathe. Five months later they told me it was glandular fever but, who knows what it was.

[Carys]: How old were you at the time?

[Sophie]: Sorry so I was in year eight, so I was 13. So then before that I was this super sporty person, I played [unclear]… did netball like every single day, gymnastics… I was on the go, never stopping. And then those two, like January to February – I think it was like 2010 – I was in bed. I couldn’t walk, could do anything. I was just like, recovering. And then as soon as I kind of could breathe again, everything was fine. I tried to stand up and I just couldn’t, like my muscles just wasted away over that time. And I started having like spasms and I didn’t really know what was going on. So I got rushed into hospital and it took five months to get diagnosed, and it was Ehlers-Danlos Syndrome.

[Carys]: Was what sorry?

Ehlers-Danlos Syndrome.

[Carys]: Which is?

It’s a connective tissue disorder. So at the time… I can’t really explain my condition it’s a long like, thing… But it is genetic, no idea who it comes from in the family. But like basically you need to keep up with like, however sporty or active you are. And if you can’t you’re, like the tissue just really gets weak and like, when it twangs… It’s like I don’t know like an elastic band when it twangs and that spasm, that’s kind of what my body does. So yeah so that kind of happened. So it was like a really hard year. I lost the ability to walk, didn’t really know what was going on, I wasn’t really in school.

[Carys]: And how did you feel, because to go from doing everything…

Oh it was hard, being 13 like I was angry, I got really suicidal and was like “I don’t know what the point of life is anymore.” Like it was really hard. Even now I’m still like “Why me?” Like I think I’ve accepted it, but probably haven’t. But at the time I didn’t, and it was just hard. I lost all my friends because I was just going into year eight so it was a new school, only knew these people for a year and then kind of lost them. And that was really, really hard to deal with. And also at the time like, my mom then gave me attention. My whole life I’d never had any because of my sister. That was a really weird dynamic in the family to like change. And then as school was going I was in and out of school for five years, like I missed about five years of education. And then in year 11, no year 10 sorry, there was a trip to go to India. And I was like, that’s what I want to do. I want to go to India. And all my family were like…

[Carys]: Why was that trip important to you?

Because it’s like, the trip that it was… So it was a week of, it was a whole month in India to go see things. To go to New Delhi and look around and then do a week of like volunteering, which has always been important to me. I’ve always done stuff even when I was ill. And then a week trekking in the Himalayas. And I was like, that’s what I want to do. And my parents were like… “What?” And at the time, I was still on crutches, couldn’t walk up the stairs. And they’re like “Sophie, how are you going to do this?” And I was like “I don’t know, I’m going to do it.” And the school was like: “You haven’t been at school, we’re not going to let you on this trip unless you pick up your grades and sort yourself out.” And I was like “Okay”. So the determination was just there, I was like right, the last five years of my life can’t limit me to this. This is not what it’s going to be. So I did my GCSEs in six months, I was doing it… Yeah, it was hard and everyone was like “You’re not going get above a C” and I’m like “Yeah I will. Just stop telling me you can’t.” I think even now, like when people tell me I can’t do something it makes me work harder. But sometimes I actually want people to be like “You can’t do it” because then I’ll get the motivation to do stuff.

Yeah it was a really, really hard year. I was coming back into school and learning like friends again. And then learning how to go up the stairs and it was so painful because my hip just kept popping out every time I did a stair. And I was like, I don’t how I’m going to do this. And it was 3000 pounds get to India as well so I had to fundraise that at the time. So then, got the GCSEs, got it done and then India came and… The night before I was stressed out like crying like “What am I doing? I so can’t do this.” And then I was on the plane and I’ve never been anywhere, because of my sister we couldn’t travel anywhere. So like as a child – my mom had this rule that she can’t take one without the other, and my sister can’t go on airplanes. So yes I was like “No. I’m going to do India.” So the first night in Delhi was the most overwhelming thing I’ve ever experienced. I mean it’s so busy, it’s the colors and the noise and I was like aaaah…

[Carys]: Describe – I’ve never been to… – describe what it’s like.

I don’t even know, it’s just like… The roads in itself, there’s like three lanes but there’s like seven cars over the lanes. And it’s just like, I’m going to die in this car. And it was just craziness and it was amazing. But it’s fine and we didn’t go to like a nice luxury hotel. It was sort of right in the middle of where kind of all the travelers go, like the hostel. Yeah so the first day was just so overwhelming and I was sitting in my room being like “What am I doing?”, rocking myself like, this is crazy.

And then we went up to Leh, which is like right at the top in the Ladakh district. And like you just got off the plane and you’re just surrounded by mountains. Struggling to breathe because it’s so high up. And it did just take your breath away and it was just incredible. And it was so different to Delhi. It wasn’t as busy, it wasn’t as crazy. It was the feeling I had when I was there, I was just happy. I was just like, profoundly happy. And then we did the trek first. And I was like right, okay, here we go. So everyone else kind of struggled but I was okay. So first we went up massive, massive mountain.

And we got up to the top and there was just this view. It was amazing. And then as we just kept… Like, we slept in the tent for the first night and as we kept going – it was a five-day trek, a struggle for five days, no one held my bag, I wouldn’t let them. Like I pushed myself, like I was always – there was nine of us – and I was always in the top like three. I wouldn’t let anyone… and just kept going.

I don’t know when you’re walking you’re just there with your own thoughts. And the whole time was like, this is just so crazy and so amazing. And where I was like, five years ago and a year ago and whatever. Like it’s just this incredible moment. And I remember standing at the top being like “I don’t know how I did it”. And then we had to rush off because my friend had altitude sickness. And her head like, it just started to swell so we literally had to get off. And then I was just like, we were dancing and chilling while everyone else is being ill. Because we were like “We’ve done it! We climbed the path! It’s amazing!” Like this incredible thing that we’ve done and I was so proud of myself. I couldn’t believe it.

And then like four hours in the cold kind of waiting for everything to happen, and my body was like “Nope, I want some attention.” So I had a massive spasm for four hours. And it was just like, my body was shaking uncontrollably. And everyone was trying to like – this is the time when I had spasms, I now have seizures and that is a bit more complicated but, spasms I can kind of, I’m not like unconscious, I kind of know what’s going on. People were trying to make me laugh to like, take away from the pain. And my leader at the time hadn’t seen me like this. And he was like “I can’t… How did I let you come here? What is this? I can’t believe you managed to get on this trip and not really tell us what was happening.” And I’m like “No, I told you but like, I’m really good at not really showing it.” Every day when I was like in pain, I was like “No, we’re going to do it. We’re just going to keep going.”

So I got carried down to where we set up camp. And then the next day, I had to go on a horseback ride. It was an eight-hour descent, because we had to get off really quickly because of me. And I was on a horseback. And then we had like a massive river crossing and I was still on this horse and I was like “Oh, this is great fun”, there was like rapids and everything. But we got down, and it was all great. Yeah, that was kind of, that was the trek. It was a good trek.

[Carys]: So what’s the moral of the story?

Resilience. And trusting yourself, even when you really shouldn’t. When you can – after India I was in bed for like a month, like I’d killed myself, it was ridiculous. My mum…

[Man]: Was it worth it though?

Of course, like, I would go back in a heartbeat. That’s where I found myself, that’s where I realized that I can do anything, I can push myself.

[Carys]: Thanks a lot!

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