Calum Glendinning-Clark: Like so many disabilities, brain injury is on a spectrum, and can affect each individual in a unique way. For the purpose of this episode, I'll invite you to imagine you are the main character in a sci-fi film, and you are completely wiped of your sense of self and memory.
Where would you start when trying to rediscover who you are and where you fit into the world around you?
What are your likes and dislikes?
What are your memories and experiences that make you you?
Do those things inform who you are? Or are you just you in that moment, now?
Kashif Saghar: “I feel like that's one of the only moments that I remember my head being completely empty, because I was looking around the room, but nothing was connecting with me. And that felt I had never felt like that before. And I didn't, I didn't really know what to do at that point, because nothing around me was telling me what I was supposed to do next…We never expected that this would happen to us. But it's it's happened to us and we've accepted that it's happened to us, and we've accepted that we're different people now. And, but it's made me see the world completely differently. And I'm glad that I see a lot of things differently. But my life is more difficult and a lot of ways.”
CG-C: Welcome to the final episode of this season of divergent. You just heard the voice of my good friend Kashif, who I met in Glasgow, Scotland, through skateboarding in 2013 when I moved there from Aberdeen. Kashif is well known amongst other skaters in Glasgow, as he is the most skateboarding obsessed and passionate person I've ever met.
We connected through skateboarding, which led on to us connecting about music and ideas and ultimately being good friends, but I never would have guessed eight or so years after meeting, we'd be connecting through both having had a traumatic brain injury. For this episode, he and I spoke about our experiences with our invisible disabilities. Kashif and I wrote about our experiences in emails quite a while before recording this conversation. In this episode, Kashif and I will discuss how brain injury has thrown us into a process of putting our lives and our sense of selves back together again, piece by piece.
KS: When I said things to you, I was so surprised that you said the same the exact same thing back to me. So a lot of the things that I was saying, I thought, right, yeah, these are lots of things that I’ve felt. And I've written them down. I've only shared them with a few people. But usually before I share them with someone, I think, what are they gonna think of me if I say this out loud? But as soon as I said things to you. You just went: “Yeah, man, that happened to me, too. Yeah, yeah, that's like the exact same way I felt I did this, and I did this.” So that that helped me out with it a lot too. And then with the, in terms of disability, because I was told, I was told by the people at the treatment center, that I have a hidden disability. And I didn't really know what that meant, at that point. So then I started to read into that a lot more.
So I do feel like that that is what I have. And that's what we have. But it also makes you feel guilty. Because then you think, well, if I can still do all of these things, how can I be in the same category as someone who can't do all of these things? But that's, that's, that comes from other people. I think that's pressure that you're putting on yourself that you don't have to put on yourself. But it's really hard to step away from that, I think.
CG-C: Yeah, and I think that's one that happens a lot with neurological disabilities, like things like brain injury, even spinal cord injury, like the one I've got, and all sorts of other ones when they're on quite a large spectrum. And I think, I don't know, we can only speak from our own experiences, but it's definitely a thing that you and I have both had where you think: Well, okay, I have maybe I have a little bit more access or a little bit more ability. So how does that mean? How do I identify under this kind of blanket word that we all fall under?
And that's when I started to kind of understand it more as like a spectrum or, or a different experience. And for me, brain injury was a big throw into that different experience of like, because there's the spinal was pretty concrete, you can't move, you know, so with with brain It was very well, in the early days before you understand spinal and stuff, but with brain It was very like I don't know what's going on, but it feels different.
KS: Yeahyeah. That's, I think that that's it's very strange as well, because I remember almost everything before and after I hit my head. But the one thing I can't remember is hitting my head. And the doctor and other professionals told me that I might never remember that. Or it could come back at one point, but they think it wasn't.
So even when they told me that I had a brain injury, I didn't question it. I didn't ask what it meant, or why it happened. They told me you have a brain injury. So I just said, “Okay”, so I just thought, Okay, I have a brain injury and that's what they've told me. And it was still very, very confusing, and I think is, so it still took a long time to understand what it meant. And like we said about the about categorising yourself as being disabled. Because you look at it the way you looked at it before you had your injury, you don't really understand what disability means until you've seen on the other side.
And like you said, it's a whole spectrum. So you do feel guilty, if you see if I mean you if I see everything you've been through, and we've not been through the same things. So I think how can I call myself the same thing as Calum calls himself. But really, that's only because I don't have enough of an understanding of it. And once you start to research it more, and you understand it more, you realise, that's not your own thoughts, that's just thoughts from other people that you're placing onto yourself. So I feel like once you start to understand yourself more, then it becomes easier.
CG-C: Yeah, I can relate to that. I think, once you start to understand yourself more as okay, like, is this it's not really a comparative thing. But it's just a thing where I'm having a different experience, than what would be considered the “norm”, even though there isn't one. But, you know, like the, I guess, the able-bodied aspect of like, “Oh, maybe I should do this in a slightly different way”. And that's what makes me what me personally identify as having a disability or, you know, I have to go about things in a different way and think about things in a different way, and interact with the world in a different way.
KS: No, completely.I think, I think earlier on, I wouldn't have identified with that. But now that more time has passed, if someone asked me that question, then I would try and explain to them what I meant when I said that I had a hidden disability. And I think that I have to understand it more before I can explain it to someone else.
CG-C: Yeah. And I think it's a lot more. I mean, I mean, I kind of half had your experience. But so I'm much more interested to know what your experience is like, because I do have a physical one that was very visual because I was in a wheelchair for a long time. But the invisible side, I think, first off, I really struggled to accept myself more. And it's a difficult one to come to terms with. And I was really curious as well, one of the added pressures I thought of immediately when thinking about, you know, what the things we'd spoken about was an invisible disability as someone in Scotland as well, and what comes along with the culture there and then in someone heavily involved in skateboarding as well. And it's like both things where you typically are not really supposed to talk about things as problems [Kashif laughs].Just you know,like, head down work through it.
KS: Oh, exactly.Exactly.
CG-C: Do you have any good stories about like, trying to explain, like, what how things are different to anyone.
KS: I remember what what people have said to me throughout this entire time, so it's been over two years now. Yeah. But even when I was worried people would always look at me and say you're fine. You're the exact same as you were before. And in one way that made you feel alright, because you thought right everyone else is Accepting of this, they think it's okay. You were you were different for a little while. But now you're, you're the same as you were before. But when people would say that to me, at first, I would feel okay. But then afterwards, when I was alone again, then I would question everything again. Because I didn't believe that I was the same as I was before.
And I know a lot when a lot of people said that to me. They weren't, they weren't meaning anything more by it. I think they were just happy to see that I was okay. So that was a way for them to say, no, it's cool, you're back to, you're back to where you were, man, you're doing all the same things as you were doing before. So even as I started to be able to do more things that I did do before my brain injury, I still felt like I was doing them in a completely different way. Because a lot of the things that I do now, I can’t remember doing them before I hit my head. And that that's really hard to explain to people. And I think it's very hard for people to understand what I mean when I say that. So even with skateboarding, I didn't skateboard for seven months. And then I started skateboarding again and started using my camera again. But when I was going out skating, I was doing the same tracks that had done before I hit my head, but I couldn't really remember doing them before I hit my head. I knew that I knew how to do them. And I wanted to do them. But I can't really remember where they came from. Do you know what I mean? I just thought, cool. I'm gonna go and skate now.
CG-C: Yeah. So it's almost like feeling. That's, that must have been like instinctively moving through something and feeling it before you even register it? And like finding yourself in that and being like, Okay, that makes sense.
KS: Yeah, I think I think that's it. Because you, you're trying to put your life back together. And a lot of what you think of yourself comes from other people. So whenever I would meet people, they would tell me stories of things that we did before. And a lot of the stories that they were telling, I couldn't remember them. But the way that they described me in the stories and things that I did, I thought, okay, that's, that's me, that's what I do. I didn't really think that I did do those things. But if everyone around me was telling me that that's what I was, like, I thought, well, cool. I'm supposed to get back into doing all of these things.
KS: That that was weird as well, because a lot of the things that people were saying to me. I didn't feel any connection with. I felt like, that's not me. I don't, I don't want to do that. I don't want to do any of these things. But I felt like, I had to do a lot of things, because that's what people were expecting of me.
KS: And that took a very long time to kind of understand, in myself as well, because I think I was still searching for answers. But I didn't really know what I was searching for. Because everything was so confusing all of thetime.
CG-C: The way you described that is a much it's like realising, re identifying with an image that other people have of like, you had that as a tool to kind of find like, for landmarks, or, you know, we talked about landmarks and different things to like, find your way? For me the things would be like, like opening up an old jotter and like, seeing a note, and it would be like a band, or like a song or like, and I go and listen to it. And immediately, the memory wouldn't be like something the name or you know what I mean? It would be like the feeling of what was happening at that time. And it just felt familiar. And then I'd be like, oh, that's me.
And it and it was like just this little accumulative process like that of just different things. I remember like getting dressed in the morning and just being like, Is this like, what do I like? Who wears this? Like, do you know what I'm like just looking down and being like, is this even and like, then you like, see something that reminds you of like, why that's there. Like, why you even have that to begin with. And then it's like a collage or something or like a little like putting all the little pieces together that make up whoever is you. And I find it really funny though, like see these things? We're talking about? The pre-injury, right? You'd probably think like, those aren't the things that define someone. Those are just like interests or superficial things. But once you're there, and once you're you have that a brain well the brain injuries that we've had an you start there the first things you kind of look for that kind of give you that sense of where you sit. It's so I find that so Interesting.
KS: Yeah.Yeah is because even, I remember when I was in the hospital for about a week. And then my mum, and my aunt picked me up from the hospital and took me back to my mum's house. And then my mum and my sisters, they said that you can, you can stay here tonight, you can stay here as long as you want to.
But when I was there, I felt like I knew where I was. But I was looking around, and I thought, I'm not supposed to be here. I have to go to my room. So I got dropped off at my house, I knew where my house was, I had my keys. And I opened the door. And I brought my stuff in, and I remember sitting in my room, I sat on my bed, and I like I was looking around my room for clues as to what was going on.
KS: But there was nothing. I feel that's one of the only moments that I remember my head being completely empty, because I was looking around the room. But nothing was connecting with me. And that felt I had never felt like that before. And I didn't, I didn't really know what to do at that pointbecause nothing around me was telling me what I was supposed to do next. But I was also really tired then. And so a lot of the time, I would have these thoughts, but I would just go to sleep. So I slept a lot the first few months.
But it was just so confusing. Because I think when you do put that much stress on your brain and try and think about things your brain just wasn't down for it. Yeah. Like, just let me race. I'm not ready for this stuff yet. It has said, it's been a long time doing that. Because I think before before my brain entry, I would overthink all the time. And I think the consequences of that were different than now with having a brain injury, overthinking can lead to other problems as well. So it still because I remember when the place that went to the Community Treatment Centre for Brain Injury, when I was speaking to them, and they were trying to tell me that it's okay, you know, entertain, you're going to be able to move on and you're going to recover from this. And I remember one of the people saying “You will recover from your brain injury”. And I remember saying to them, “I don't think you ever recover from a brain injury”. And I think that the way that this said it was because they could see how worried I was they were trying to reassure me. But what I was trying to say to them was what I thought that was that everything will always be different for the rest of my life now. I won't feel like one day. It's been 10 years now. And I think, okay, I'm okay, now, I feel like you're gonna keep, it's gonna keep changing throughout the rest of your life. So I feel like it doesn't, it's the thing that happens to you, but then it's with you for the rest of your life as well.
CG-C: I find that really interesting that they said, that “recovered”, like recovery from neurological injuries. As far as I understand that I relate, maybe people do view it as an endpoint. And that's helpful to them. I don't know everyone's different, but for me is a constant process. But being in that constant process makes you have to really engage with where you are each day and each time and each thing.
I'm sure you've noticed this too. with brain injury, this was a big one. It's like you catch yourself maybe in a conversation or going to put a note in your phone or something and you just it's there like what you're thinking the thing that you wanted to access, that memory or that thought or that thing is just right there when you wanted it. And it's like whoa, you're like oh, so it's it's on, like it's coming back and then little things and like what I found to with the recovery stuff is like it's like reprogramming too like if you repeat something each day, like we'll speak about this a little bit more. I know you've spoken about it but like reminders, notes become like your best friend. Like writing notes like sticking them everywhere, putting, recording anything you wanted to record that night before you go to sleep. So you wake up you see it and like all these little things. The more you do them the more they just become automated, but then you find I find myself remembering lots of lots of stuff, but becoming very much a creature of habit. Because it's very, that's like the environment I've achieved, managing that. So it's more comfortable for me to like wake up at the same time, go to the same cafe and order a coffee, the same coffee before I do anything else, because that's like the routine that's comfortable. And then I feel like I can build within that routine. And then you start questioning things like, is this something unique to a brain injury? Or is this just me coping? But there's that overarching feeling of difference? It's like carving an like, a new headspace. Foryourself.
KS: Yeah.BecauseI still, I still get that feeling. I still have this thought in my head. When I'm doing something. I wonder, am I just doing this, am I doing this because I'm different now? Am I doing this because of my brain injury? Is this why I'm entering this situation like this? And that's, that's so difficult, because you're putting so much pressure on yourself, when you don't have to, but it's so hard to stop to stop doing that.
So even if I'm having a conversation with someone, and they'll say to me, “I remember when you used to do this”, and I'll laugh and go. “I don't remember that”. Yeah, you think wow. So if I don't remember doing that would I still remember it if I didn't have a brain injury? Because a lot of the times I say to someone, I say I can't remember that everything's really fuzzy for me, and they go, “Oh, yeah, I don't remember that part of my life, either. That's normal, you know, you don't remember things like that”. And that confuses me a lot as well. Because before I hit my head, I really cared about having a good memory. And I did a lot of things. I documented a lot of things. I wanted to, I could if someone said to me, we were at a spot and someone wants to film a trick. And they would say, has this been done here before. And then in my head, I could go, this guy did this, and this and this. And then that became more difficult when I got my brain injury, because I felt a kind of pressure because I thought people would ask me these questions, they expect me to know the answer to these questions. So someone would ask me a question. And if I didn't know the answer, it wasn't a big deal. But to myself, I made it a big deal, I would get upset at myself. And think, why don't why don't I know this? I'm supposed to know that people are expecting me to know these things. And that's, that's really difficult as well, because you don't have to be any of these things. But you just somewhere inside of you you're like, I have to live up to what people think I'm supposed to be.
CG-C: Yeah.Did that for you change your relationship to memory? Or like, the value of memory in the sense of like, Is it important to remember, like the name like what's been done at that spot, like tricks, skateboard tricks that have been done at that spot? Or is it important to remember enough like, how you see how you relate to that spot as a skateboarder to see what could be done, then? Do you know what I mean? Like a memory in like, like how you said about, like, re like doing tricks over and over and like feeling them out again. And it's like that memory is still there, right? The one the feeling. And that for me when with my brain injury, that I started to, like, move away from trying to worry about remembering names, dates, times, unless like in everyday bor- like kind of mundane stuff. But like when it came to like thinking or being creative, and more like what that immersive experience was like, and then each time I'd go into more like the immersive experience, the feelings that were familiar from the past would come back. And is that similar for you?
So like, if you're at a spot, maybe you won't remember those tricks, but someone, you might smell something or hear something and it reminds you of another time you were there and someone did something and then you'd remember the trick because it's more experience? Was that was that how it was for you?
KS: It was it was really difficult because I remember there were there were places that I would go to, and I would think, Oh yeah, I'm supposed to be here. I feel comfortable being here. But then there were other places that I would go to that just seems so strange to me. But I know that I’d spent a lot of time there. And as as, as time moved on, A lot of the things did start to come back to me, because I was doing a lot of the same things that I was doing before. But I think after, after a while, I just stopped caring about a lot of things. I just thought, it doesn't really matter if you remember this, or if you do this anymore, and you kind of I think it was very freeing to stop caring about a lot of things. But it was also, it felt really weird, because I thought, Wow, I've probably spent years of my life caring about this thing. But now I just don't. At all. And you felt it was good, because you felt you did totally feel free. But then you also felt bad. Because you thought, well, am I doing something wrong here? Am I supposed to be doing - Am I supposed to care about this thing more than I care about it? And so I still have that feeling with a lot of things I still view feel very confused by a lot of things. Because I think like we've spoken about before, even like music, that you listen to anything like things that you watched, you would watch them again, or really listen to your records and think I don't feel anything from this anymore. And maybe that's just a normal part of life. And then that's again when you question is this just because my life has changed? Or is it because of my brain injury? And I feel like so many situations, you're still asking yourself that question. And I can a lot of the times I can't tell which one it is.
CG-C: Yeah, I'm the same, I think. But when something does come through from the past, it’s like - has this really strong pull and like power to it, like when you do hear a piece of music, and you're like, oh, wow, that reminds me of like this thing. And then you it's like, you get that memory back. And then that becomes you get you get like you get that back, but it doesn't hold the same weight. It's like, like you're saying, like you're looking at memories, instead of as part of you like from the outside. It's kind of like a like, the way I describe it is almost like a more mindful experience. So you're like, you know how they describe like, mindful like the like that mindfulness stuff, like the ones they do on the apps and stuff and they're like, it's like clouds floating through the sky, and you're like lying and watching the clouds. And they're just thoughts. It's kind of like seeing memories like that, where you're like up, not a part of them, but apart from them. And you have to just, I guess the long way of saying is you have to start from scratch, in some sense. And like, really start re figuring out everything. And like you said, it's absolutely exhausting.
For me, I was the same as you like I was like, well, I think I was just, you know, more focused on being in a wheelchair at the time. But I was like, I remember being in the brain injury unit and they took, we'd see a speech therapist and a different people would come and ask you questions and test if you could remember them. And I would just cheat by like writing them all on my phone and studying them like five minutes before they came because I was like, I don't know if this matters to me as much as like, how I feel. And then the one thing that really shot it home was when I went to like a group, and it was all the people in the brain injury unit together all having coffee. And the purpose of the whole exercise was just for everyone to chat about the news or the weather or whatever. And watching how hard that was for everyone to do. Like take turns or know like, what, whether suddenly they should say loudly or softly or angrily or sadly or, and like if people were interested, not interested, if someone could manage like, their coffee and talking at the same time. And I was like, okay, this is very real. And I need to take time to like, be patient with this, you know? But I was never but what's interesting is I can speak to you about that. But at the time, any of my friends or anyone else if they said oh, you know, you do have a brain injury, you might say like, I remember people said to me you have brain injury, you're gonna struggle with that. I was like, No, I don't I don't I'm fine.
KS: Yeah,yeah.I think it's because he spent think like a lot of the a lot of the thoughts that we had, I think there is there is like no base for a lot of the thoughts that you were having because, again, you never really had something to relate it to. So when when I would have a thought, then I would repeat it to myself. And then I would think, if I tell someone this, something bad will happen, because they'll think they'll think differently, they're gonna think differently of me, or they're gonna think that I'm dangerous.
So I just didn't tell people a lot of things for a while. And the first few months, I was still, I was still very fatigued, and I couldn't, I was speaking much slower than I speak now. So the way that people reacted to me was different then. So they could see that I was really slow. So I remember that now, when I talk, I just talk better remember that I would, I could hear myself seeing the words inside my head. Like I was saying them to myself to double check them. And then I would say them out loud.
KS: And when I explain to people they thought they understood, but I don't think. But it's just such a strange thing for people to hear. Because it would go Yeah, I remember, when you were like that, I remember when you were speaking really slowly. And as I said, Yeah, I can remember that too. And that feels really weird that you can, that you can remember yourself like that. And that in a way, that's good as well. Because then you can kind of guess, like your progress, you can see your progress. Because you think, wow, at this time, I couldn't do this. And now I'm doing this. But it also, it's really hard to understand, because I can't you know, you were like that because you have a brain injury, but then you still start to question yourself and think, well, could you have done something differently, then? Were you not trying hard enough? Were you…maybe you weren't taking your medicine? What were you, you know, there's something that you were doing wrong.
And that's that, I still do that all the time. But I think it's happening less now. Because I think I've understood it a lot more and realised that a lot of the things are out of my control. And I really don't know how long certain things will take to work. Because I had no idea how long it was going to take for me to reach this point. So I think sharing things with people is difficult. If you have an expectation, I think.
CG-C: Yeah, you're right.
KS: When I would say something to someone, if I would think if you're looking for someone to reassure you, or if you're looking for someone to go, just just give you something. I think that's that's that's really dangerous as well, because then you're just going to be disappointed when they don't give you the reaction that you want.
CG-C: Yeah,I think so
KS: You have to, I guess, you have to find the right people to speak to. And that may mean that you have to speak to a professional or you have to find other people that have been through the same thing as you're going through the same thing as you. So when I first spoke to you about everything I didn't, I didn't think that what we were going through was the same thing at all. I could see from what you were experiencing, I thought I can put myself in the same category as Calum at all. Everything that's happened to him, that’s not what's happened to me. But when I spoke to you, I realised that we were having a lot of the same thoughts. And that that made me feel like you understood completely, because you would just say something to me and I just go wow, that's, I've not heard someone say that to you before. That's so cool. That's amazing, man.
CG-C: I think it's through, like my experience is up to there like of just becoming very frustrated with the clinical approach or like, try, like you said, like having expectations, maybe trying to, like hoping for something back and like looking for either professionals or people you know, around you to give that back to you and being disappointed. It made me become very blunt I think, when speaking about my brain brain injury, especially, and also having to communicate with support workers, that was a big one. Trying to be like, the big one for me was we kept leaving the house and we get somewhere and I would need to go to the toilet enough to use a catheter to go to the toilet. And we wouldn't have any because I'd forgotten to pack them because I was thinking about the as you'll know, like when you have three things to manage, juggle. It's very hard [Kash laughs].
Like when you're thinking okay, I gotta go this appointment. I gotta make sure I got this food in my bag. I got to make sure I got my keys, my wallet, my phone, and you leave and then you get to the whatever you're supposed to be and then you have to just come immediately back home because there's no catheters in your bag and you have to pee. And me having to, you know, I’d just suffer that for a long time and blame it on myself oh Calum needs to be better. And then I started to be like, right, okay. Before we leave, you need to make sure as part of my support that I have catheters in my bag, and the guys would catch on to that eventually, and they started doing it reminded me reminding me, now anytime I go near the front door, I automatically check. So it was like building like that routine and relearning.
And so now looking back, I could be like, oh, you know, it's not that big a deal. My brain injury’s okay, it's manageable, but you don't you forget about those different steps along the way. And I think those different steps along the way make you be more rash. So when I think where I'm getting with this is when I got to the point of communicating with you about it, I was very like, to the point like, yeah, this is how it is for me, you know, cuz I feel like that kind of embarrassment or shame or uncertainty falls away very quickly, when you're forced into certain situations like that, where you have to voice your needs to get what you need.
KS: No that that's it because, like you say, you feel embarrassment, and the shame, that's it doesn't go away for a long time. Because you’re still comparing yourself to other people is always dangerous, but you're automatically doing that when you're in this situation. So I remember, at the treatment center, they said to me, they said, “You're farther ahead than what we thought you would be”. And they were, they were really surprised that my progress in the way that I was, and they were really happy, and they said, “this doesn't usually happen”. And then they said that a lot of people that they treat don't have the same support system as I have, they don't have the same life that I have and it can be difficult for just depending on what your circumstances are.
So at that point, I felt good that my life was moving on. But then I also felt like, well, there's so many other people that also have a brain injury. Why is it okay, that we're all we all have the same thing as each other? Do you know what I mean? Unless you obviously we all have brain injuries. But everyone's it depends on your own life it's specific to everyone. But I thought if I can recover from it, and this time, and I'm further ahead of what you thought, what am I doing that's different than what other people are doing.
And also, it's not their fault. It's not their fault that they haven't recovered in the time that you thought they were going to recover. So you start to question yourself even more, so when they did say, Yeah, you're farther ahead than we thought you would be. Then I would think oh maybe, maybe this brain injury isn't that bad? Maybe I'm just being lazy. And, and yeah, and I'm just making excuses for everything. So sometimes I would wake up and I would think, I don't want to do this today. Is that just because I can't I can't be bothered today? Or is that got something to do with my brain injury and that’s so difficult to kind of, to gauge. Because you really don't, you'd really don't know which one it is. And it's all it always seems like a waste of time to figure out which one it is because you think, why wouldn't you? Why did you know that? You know,
CG-C: I had a really funny one. I was I've been going to yoga as part of my like, spinal cord injury thing, like I just started going to regular class. And because it's because it's an able bodied class. The guy, the instructor, it's Ashtanga. So it's not like one to one. It's like a group and he was like, “Oh, why do you always bring the bit of paper with all the poses in” and I was like, “ah, I actually have a brain injury as well, which was awkward to say I felt and so it's might take me a little bit longer to remember the sequences and the poses”. And he was like, “Well, when I speak to you and when I see you I don't see someone with a brain injury I see like a highly intelligent young man”, and I know he meant that as a compliment. Or like like you were saying before about people being like, Oh, you’re just the same like they mean well by it. But what it it put me in this spiral of like if I identify with having this disability or this injury and in order to accommodate it, the deeper I go into that and identify with it, am I because it's invisible, am I actually perpetuating it and making it worse by becoming more like accommodating of it? Or do I dissociate from it? Because it's not visible, pretend it's not there just have a harder time and, and blame it on other things. And I was like, I don't really feel that it would be very helpful to just start to not see myself as having that. But at the same time, I don't, It's important not to define myself by that.
And I think there's a difference. And I think that with invisible disability, for me, that was a point at which I was like, oh, maybe that's where people struggle a little bit. To not like, I mean, people from the outside able-bodied people.
KS: So I think, because when when when they said that, you say they were meaning well, to think. No, no, you're not. But that's, I think that it, sometimes you're not that angry at someone, you're just heart because you think they see the other thing is a negative.
So when you say that you think if I say to someone, oh no, this is difficult for me, because I have a brain injury. And they go, no, no, no, you don't man, like you do but you’re fine now. As if that's a really bad thing that you're supposed to get away from and get rid of. And obviously, there are a lot of people when they're saying that they're not meaning it like that. But then that makes you feel sad in yourself, because then you think this is people don't want to hear about this thing. This is like a bad thing to people. So maybe be like you said, maybe I shouldn't say it out loud anymore. So for a while. as more time passed, I just stopped talking about it with a lot with a lot of people in my life I've been very open and regularly spoken to them about everything. And I've been very lucky that I've been able to do that. But then as more time passed, when I would meet new people, I just wouldn't say anything to them.
And they didn’t see me any differently. And it felt good for me as well, because I thought I don't have to explain myself to anyone. But then it also felt like I'm letting other people down that also have a brain injury. Maybe I'm supposed to talk about this more, because that's not fair that it can just be dismissed so quickly. So then, again, that’s you putting all this external pressure that you put on yourself, that you don't need to but I still felt like, no, this is a real thing that's happened to me. And maybe other people don't see it like that. But I can't not speak about it, I have to still let people know that this is what's going on. Sometimes not just for not just so that they can understand. I think sometimes it's just for yourself to say I said that today. You know, you just kind of feel like, well, you're convincing yourself of it as well, at the same time, I think.
CG-C: Yeah, yeah, I totally agree. I think that's such like a tightrope that you walk. Especially, I'd imagine, you'd experience it a lot as a guy in Scotland and skating. And for me, I've had to find that I have to adjust how much I say based on the context and who I'm interacting with. So I have to say, with brain injury that, you know, we, you know, we're talking about, like the burden side of it in terms of like you're always reflecting and it eats away at you a little bit. That is one of like the privileged sides of it, compared to my friends who do have very visible disabilities,
KS: Like even like without a brain injury, you just want to be understood, even. I feel like everybody feels that sort of way that they want other people just to get what they're saying. And they don't want to have to keep explaining things. They just feel like if I say something, I just want you to get it. But then with your brain injury, it's so much more difficult because you're you're questioning everything yourself anyway. So even if someone does respond your still going to question their response because you can't tell you just can't tell what's real with a lot of things. So I feel like after after a long time I just thought, it doesn't really matter if people understand what I'm saying, because I just have to, I just have to keep moving forward.
And then I think what helped me a lot, once I started to piece more of my life together was that I remember from our life because because of my race, because I'm not white, I was always treated differently. And there were always things that I felt that I wanted to say, or things that I would say that other people wouldn't understand. So what I started to do was think about my brain injury in the same way now. And in the way that it's, it's completely inside of me. And unless I speak to someone who's been through the same thing as me, they won't understand.
So when I speak to someone else who's experienced racism, we can just connect on it. And I won't have to see, I won't have to delve further into it. They'll just go yeah, man, I remember that happened to me, this is always what happens. This is how I felt. So then I started to really get to the brain injury more. I can't, I can't expect everyone to understand this, because they don't have the experience of it. So whenever I say something to you, even though we've not been through everything, in the same way, I'll just say one word to you or sentence and you can just go, yeah, man. And then you can just say, give me like a full example and say, I've actually I've actually thought about this for a long time as well. So I think, I think thinking about things, with my brain injury, the way that race, and racism is affecting my life, I feel like those two things that really helped with it, were it kind of got to a point where I was like, this is, you're going to experience racism for the rest of your life. But you're also going to experience your brain injury for the rest of your life. And people are not ever going to a lot of people will never understand it. And they just won't care either. But that's just the way that your life goes. So that that helped me a lot. Ifeel.
CG-C: maybe I should think about more like how I experienced the world and why someone might experience it differently.
KS: Yeah, it's, it's, I think, because you do you just wantI think a lot of the times when when you are trying to explain to other people, it's also just because you want a solid answer to things, and there isn't really a real answer to a lot of things. Anda lot of the answersfor us don't come in one moment. It's it's like over months or years, that things start to make sense. But it's like you're just searching for, like an absolute answer to things, but it just doesn’t. It just doesn't exist really. And so that's, that's really hard to to manoeuvre around as well.
Because even though because when you speak to when you speak to doctors about this, they'll say they know, they know so much about what a brain injury is, but they don't because they've not had a brain injury. And so a lot of the things that you would say, because I remember saying to a doctor that my head hurts, and they said it doesn't, you're imagining that your head hurts. And I said, well, okay, because I I know where I hit my head, but I don't remember hitting my head. But I remember I was holding my head because I felt like I could feel something happening. And they would always say that's that's not happening. You're just imagining that that's just happens. And I thought well cool, right. Maybe you're right. But why have you just said that to me is if that's that's where it ends for me that I just go to you, hey, this is what I'm feeling and then you say you're just imagining that, why would I then tell you what else I'm feeling? Because I'm afraid that you're just gonna say yeah, no, you're just you're just imagining that man like, that's not really what's going on.
CG-C: I really wanted to ask you about when I was in the brain injury unit, they got me to do this. And this thing called a neuro psych assessment, and it like, basically tells you how severe it is. Because for me, I just had no oxygen going to my brain for a really long time because I lost all my blood in my body. So they didn't know, they they didn't know like, I'd whacked my head as well, but they didn't know like how severe it would be or like how like kind of what you were describing how the recovery would be.
I think they thought it would be a lot more severe. And so they do this assessment. And I remember sitting with the guy and he's going like “count backwards in increments of three from the number 70” or something. And like, “I'm, I'm really sorry about I just don't feel motivated to answer this question at all. I just, I’m in inpatient. I've been here in the hospital for four months, I don't know where I'm going to live. I don't know when I'm leaving. I don't know how I'm gonna get a job”. And then they'd be like, “look for this to work, you really need to just answer the question”. Yeah, I was like, I started then again, like we were saying before, like question like, is this a symptom of my brain injury? Or is this a symptom of my emotional experience of getting a disability?
KS: I think that whatthis is, this is, this is one of the strangest things that's ever happened to me as well. When, when I had my brain injury, I, I couldn't work. So I was told to apply for benefits. And that was, that was really difficult because, again, you question yourself, because you thought do do I deserve this? Should I just be? I'm okay. They said that I could have died but I didn’t. And so does that mean that I'm just supposed to get on with things now? So, it was very long process. And it took a long time for them to believe me, and for me to receive money. And when I did start receiving the money, they didn't give me everything that I was entitled to. It took months after that for them to go, yeah, cool you should get all this money to and then the back deeds and money.
But then there is an extra benefit that you can apply for. So I applied for that as well. But you have to have a face to face interview.
CG-C: Oh is this fora personal independence payment?
KS: Yes. Yes. So my sister, my youngest sister, she went with me. And before we went, and she said to me, be careful, because they watch you from the moment you go into the yeah,
CG-C: Did they ask you they they ask you like how did you get here?
KS: Yes, yeah, everything and they're watching to see is that my sister said don't even open the door. I'll open the door. Because if they see you opening the door, they'll ask you how she can open a door?
So I went, I went and then we're sitting in the waiting room, and I was looking around. And then I made some jokes with my sister. And she said, stop it. Stop laughing and she said, No, you can't do that. And then they took me, they took me into the room. And the there was a woman that was she was leaving the interview. And then there was another woman there taking notes at the site. And then they started to ask me all these questions. And then they said, how long can you walk before you have to stop? And other questions like that? And I didn't really know how to answer any of them. Because in my head, I was thinking, I can do this, but I can't do this. But if I say I can do that. I won't get any help. So that means that I'll have to lie. And then I said I can't lie to them. That's not okay. So I didn't lie to them. But at the same time, I knew if I tell them the truth, they're not going to help me.
They didn't like they didn't like my answers. So then they placed a piece of paper on the table. And they said, “Can you fold this piece of paper in half?”
CG-C: Oh, my God. Yeah.
KS: And when they they looked at me and said, Can you fold this piece of paper in half? So in my head, I thought, I can fold this piece of paper in half. But what if I don't? What if I fold it in a different way? Then I'm lying. And I'm making this up. So there's so much pressure on yourself. Because if you tell the truth, you go home with nothing. If you lie, you might get something, but then it's not okay, what you've done. So I just looked at the paper I took it was maybe a few seconds and then in my head, I'm thinking no, just do it. So I folded the piece of paper in half properly and then I gave it to them. And they said, yeah, this is just an old test that we do, to check if you're okay. And that and I don't really remember anything else in the interview. And that's the thing that always stood out to me. And then I was rejected for the PIP! Is that because I folded a piece of paper? Is that why did that prove to you that I'm okay?
CG-C: I know it's a point scoring system on paper. So that's why that's what they look for. They look to give you points, right? He got public transport to your appointment, you get so many points, if you can open the door yourself, you get so many points, but folding the paper that must be high up there on the points.
KS: I couldn't believe it. And then I remember that. I told the people at the treatment centre. And I said, “Yeah, I said, I could have lied to them. But I didn't lie to them. But why did they tell me to fold this piece of paper in half?” And I can't? I can't remember what it was that they said. But they said I think I can’t remember when he said that was an old dementia test. And they said, but it's not it's like an outdated test. I don't know why they did that they shouldn'thave done that.
CG-C: That's so strange. Normally, they tell you for those. For those like appointments, they said they used to always say to me, and like, I actually didn't do this, but still my disability because it's very physical as well was severe enough to get access to those benefits. But they tell you like you're supposed to say what you are on your worst day. And I was always in conflict with that, because I was like, but I don't want to present myself as someone on their worst day, I want to present myself as who I am at my best. And it was kind of a similar thing about your one sounds like some sort of like absurdist drama or something like a play.
KS: No, no, no, completely, totally. Cuz you think you can, you can't make this stuff up. And I thought like, in that moment, I thought, well, imagine, I think I'll be I'm gonna, I'm gonna get by, okay, if I don't get the help from them. But other people who really, really do need that help, they're probably being rejected too and if it's because of how they fold a piece of paper, I can believe that this is okay, like that. They're professionals. And this is how they get through with people. And I saw people there. And again, that's just me guessing when I looked at them, and I thought, Wow, you need this more than I do. But again, I feel like that feeling is also wrong for me to look at things like that, because everyone, even everyone with a brain injury. So obviously all the people there, I didn't know what reason they were there for everyone has their own thing. But I think we’ve said even with a brain injury, everyone has their own, you know, someone can have it more severe than you have it. But it doesn't mean that they should get money and you don't get money. Everyone is still supposed to get help. But I still feel like everyone should feel like words should be more accurate with things sometimes. So we I feel like I wasn't told I wasn't told enough specific stuff about what happened to my brain. And like what in other words to kind of explain it to me more, right? Because I didn't, I didn't ask for more information maybe. Or they felt like they didn't need to really say that. So I feel like that's that's really important so that people can understand exactly what they're going through themselves.
Yeah, I think it'sstillbecause I think I told you before that I - there's there's charity here called headway. And I had not heard of them before my brain injury and I was told about them in the hospital. So I remember I looked at their website, and my sisters, they researched it for me as well. And they said no, this place is going to be really good for you should go and speak to them. So I made an I made an appointment to go and speak to them. And then the person, the person that I met there, he he was leading some classes there. And he'd had a brain injury himself. And he was the first person that I met that also had a brain injury. So that was the first time I was speaking to someone else. That had a brain injury and when when I spoke to him, that was the first moment when I felt like I didn't have to hide anything.
I didn't have to think about what I was saying, like, think about the what what he's gonna think of me. So we sat down he made, he made his tea, and then we just sat down and we started talking. And then I just told him everything. And he just turned around to me. And he just said, yeah, man, that's it. I had that same feeling this many years ago. He said, “it took me about five years to kind of get on with things”. And at that point, I thought, wow, this, this works, you have to find other people that have been through this, and they will be able to speak to you, and they will understand how you feel when other people were dismissive, dismissive of you. So that that helped me a lot. Because I just thought, wow, he's he's been through this.
He said that he, I can't remember. He was studying, studying neurology now.
CG-C: Oh, wow.
KS: I think he was going to get a PhD, said that he, I didn't know if he I can't remember if he started the studying before he had his head or after. But that's what he was doing. He was doing all his own work into any been working with a lot of people at the at the charity. And I thought that was amazing. Because I thought, Man, he's been through this. And now he's helping other people that are going through this again, now, himself. I never. I think I emailed with him, but I never got to see him again. I think he left the charity, as well. But I think even just that one, that one meeting with him just helped me so much. It's so it's so reassuring, because you just want to you just want to be able to say what you're thinking without being judged. You know? It's such a simple thing. But it's so it's so scary. Because you've every time you're about to say something you think I know, people think differently of me now. Or maybe I won't be allowed to do something anymore, because of what I've just said.
CG-C: Yeah, I used to think
that a lot. I used to think that like if I say that, will, they put me on a different medication?
KS: Yeah, yeah.
CG-C: But the emotional relationship, that's the one I just needed to do myself and really work hard at. That wasn't one that I could just write something down on a bit of paper to remember.
KS: Writing stuff down is had very weird relationship with writing stuff down. Because at first, we were told that that's gonna be part of our life, now we're gonna have to use writing aids, we're gonna have to do all these things. So at first I thought, no, I'm, I'm gonna be okay, I would need, I would need these things. I will just be able to get through things. But then every day, I would forget things. And like you said, like, you would just leave your house. But you didn't have everything that you needed with you so I would leave the house a lot. And then I would be outside, then I would look in my bag and the stuff wasn't there. And I'd forgotten all of this stuff. And then I'd go back home and I would get the stuff then I would go back out again. And then. And then I started to just, I just had to be straight up with myself and go, Yeah, man, like, you keep forgetting things. Start writing, just start writing them down. And then I started to write them down. But then you felt embarrassed because you thought, okay, that's fine. If I write down and I see them but I can’t let other people see them.
CG-C: Oh, yeah!The lists! Yeah, I used to I’d take them off the walls and stuff.
Yeah. So if I let other people see this, then they'll think, oh, we can't trust this guy to do this. Because he doesn't. You can't remember that stuff. Then Then you're doing this thing in secret that doesn't need to be done in secret. And you're making such a big deal over and you keep thinking, no, no, no, no, I can I can't do this. I can't do this. And then I would say like, oh man, what someone sees my notebook in my bag what if they see something?Qhat? It doesn't, it doesn't matter if they see it.
No, but someone might ask me to film them doing doing a track on their skateboard because they think I can't do stuff properly. So they have to hide this from everyone, right?
CG-C Yeah. Yeah. Like what if they don't hit me up to come out filming because I think I'll forget to get the clip. Like what if I missed that try!
KS: It's as good that we can make there's lots of things that you look back at and you feel really sad about. But I like the things like this. You can you can laugh at yourself and go What are you but I think I really, really did think that Cuz I thought man was like, I'm not like emotionally. I'm not right. I'm not reacting to a lot of things the way I'm supposed to a lot of lost feeling for a lot of things. But then what if I, if I write this down and someone else sees it, or they think that I don't like them anymore?So you just, you go in this spiral where you’re like,what am I doing, man?
CG-C: I think it's almost like yet the fear of like having the notebook in your bag, you need to have it in secret, like in a lot safe or something?
KS: No, no, no, no, exactly. I think that there's so much of so much of your brain entry is completely linked to what other people are going to think about you. And that's so it's so hard to let go of, because it can be dangerous, because you can just say, “Well, I don't care at all”. And I think there's a difference between not caring, and just giving up, almost, you know what I mean?
Because I think like a way, like, a way that I got through, everything was to relate a lot of things back to skateboarding. Everyone skates in their own way, everyone's got their own things that they're good at. Everyone's on their own level. So I think that if you can kind of treat your life like that as well. And say, well, even before my brain injury, I wasn't doing the same things as this person was doing. I did the things the way that I wanted to do them. And I was satisfied with these things. So then I try and think like that more now as well. And think, well, these are the things that I want to do. And I feel happy with these things, and I need to work on these things, so then you kind of like start to accept it for yourself more.
With just with time, I think things will make a lot more sense. I feel like even though it's been two years, it's not. It's not a long time at all, really.
CG-C: Nah, I’m, two years next week.
KS: So think like it. Like, if you think about how much of your life you've lived before that two years is not much in the whole time that we've been alive. So I feel like it's when we're much older, if we're lucky enough to be older, then I feel like we will understand things a lot, a lot more.
I think maybe a lot of things won't matter as much when we're older as well. I feel like that that's a good thing as well, because you'll be able to let go of a lot of it, it won't. It just won't matter as much. But I still feel like you that that's how I feel about it is that it's changed it's changed everything in my life. I didn't -we never expected that this would happen to us.
KS: But it's it's happened to us and we've accepted that it's happened to us, and we've accepted that we're different people now. And, but it's made me see the world completely differently. And I'm glad that I see a lot of things differently. But my life is more difficult in a lot of ways. But that's that's okay, because I can't control that. But I feel like I've benefited in a lot of ways from this happening.