Summary

In this interview, Shaima, our Patient Engagement Manager, speaks to Carson Kawabata about the challenges that he has faced with citrin deficiency. Throughout the interview, Carson touches upon themes of identity and community.

Interview Transcript (edited for readability)

Shaima: Do you want to start off by telling us about yourself? Perhaps your name and a little bit about how you manage your condition?

Carson: My name is Carson Kawabata. I’m an 18-year-old senior in high school, in Salt Lake City, Utah. I go to a pretty small school, which I think has played a big part in how I’ve been able to manage my condition.

At my school I’ve been lucky enough to compete in high school golf for the last four years. I think it’s been a really cool experience to build that collectively as a team, and still compete. Even though we’re not the best, it’s still a really good experience, I think.

Outside of school, I also do martial arts. I’m a black belt in Taekwondo. I’ve been doing it for 10 years. Now that I’ve been doing it for a really long time and don’t get to train as much, I have become more of a teacher. So, those are just a couple of things I’ve done as extracurriculars outside of school. I think all my extracurriculars have really helped me build my foundation for managing my condition.

With that said, I would say overall, a big part in helping to set me up for success is having my support system. I wasn’t diagnosed with citrin deficiency until I was six years old. And regardless of the diagnosis, we didn’t really know what to do exactly, and doctors had a difficult time diagnosing me. So, for the most part, it was just experimenting a little bit. Reflecting back now, I wasn’t really aware of this kind of experimental period, it was kind of just my family allowing me to listen to my body.

Before I was diagnosed, I was raised by my grandmother a lot. She helped me learn when I needed to eat and how much. Before I could talk, she learned this the unfortunate way when I would scream at her. After a few times, she had built a routine. Before I could eat whole food, she would have my milk ready around 30 minutes before I would scream. That routine has carried on through my whole life. To this day, I have a protein shake about every two hours.

To sum it up, I think my family really set a strong foundation and it hasn’t really felt a lot like I’m managing my condition – It was a lot of my parents, my grandparents, giving me the tools. I feel like I’ll be a lot more successful once I start feeling like I’m managing my condition on my own.

Shaima: It sounds like it’s been a team effort. Thanks for sharing that. It’s really interesting to hear about your routine and how you’ve managed things so far. I am curious, at what age do you feel like had an understanding of your condition?

Carson: I mean, one thing I kind of forgot about was when I was two or three, I wasn’t growing. So, I missed out on a very big growth stage. So that leads to one of the things I struggled with when I was younger which I didn’t necessarily connect with my deficiency.

When I got older, I had this science research project at school, and I decided to look into my deficiency. That’s when my mom got your guys’ book. I was able to read through it a little bit, and quite frankly, I didn’t understand it very well, but I think it was a good step in the right direction. Since then, I’ve understood a little bit more about the emotional side of it too.

One of the things my family has used as a term is “low protein,” to refer to when I go too long without having food. When I get to that stage, I get really lethargic, and as you can imagine, especially as a shy kid, it was hard for me to vocalise when this was happening. As I got older, I started to understand that when I got low on protein, my judgement started getting loose, I guess you could say. So, looking back, I really wanted to focus on managing myself before I got to that point. Because I’ve had a lot of lows, to be honest, when I was low on protein.

Now, I don’t want to sound like I’ve had my low points only because of my protein deficiency. But it definitely became hard to differentiate whether I was low on protein or whether I was anxious for example. But as I’ve come to understand my protein deficiency on more of an emotional level, I think I’ve become a lot more aware of myself. Even though I still do get low on protein as an adult, I definitely feel less of that anxiety about messing up. One of the things I struggled with on the golf course was not only did my protein levels affects the way I played, but I also had a tendency to lie about my golf score. I especially had a hard time, just because my ability to focus was really low. Just overall, I would say, I just had a hard time being vulnerable when I was low on protein. You know, my understanding for the majority of my life has been based on observation and reflection.

Shaima: You’ve touched on a lot of different aspects of your experience there. How do you feel that growing up with citrin deficiency affected your relationships? Or your upbringing, I guess? Because having a rare disease… it’s a very unique experience in itself. And then having citrin deficiency specifically is also a very unique experience within that. What role do you think that played in how you grew up?

Carson: Like I said, a lot of my time in elementary school, I correlated citrin deficiency to my height. I think, to some degree, because a lot of my classmates were taller than me, you could say that was one of the reasons why I was shy. I didn’t really get the idea that I had a rare disorder, to be honest with you. Like I said, my family has played a big role. I think regardless of my deficiency, they’ve been supportive of me, not because they think I need more help, they just want to be supportive. Just because they’re family.

With that said, something big in my life that I feel has affected my relationships, especially when I’m low on protein is my ability to think on the fly. When I was in middle school especially, I built this paranoia of messing up when I was low on protein. So that triggered my fight or flight a lot more. I started saying things and not thinking about them, if that makes sense. I think one of my biggest examples is in seventh grade, I made it harder for myself. And to be honest with you, at the moment, I thought I was making it easier for myself by showing the teacher that I was normal, that I could read a book in a week like everyone else could, or at least I thought like everyone else could. But ultimately, you know, experiences like that initially hurt my relationships with my teachers. And I think after making a couple of mistakes like that, it kind of turned me off in terms of creating those relationships with my teachers. But as I got older, and started to understand the reasons I lied, and I started to take ownership of my life. I don’t think I could take ownership for my actions. But I think I have gotten better at it which has really helped me to stay connected with myself and others.

Shaima: Thank you so much for sharing that. It sounds like some challenges have come up along the way, but that you have really tackled them head on. I mean, a couple of things came up there that made me think about the theme of identity, you know, you were talking about this sense of paranoia about your achievements. And I guess to some extent, in my mind, that is coupled with worrying about how other people view you. I guess you kind of mentioned earlier about lying about your golf score and things like that, and they all kind of tie back into identity. So, I was wondering if there are any specific things that you feel has affected your perception of your identity?

Carson: Something I’ve been thinking about a little bit in terms of identity is the bigger picture of disorders in general. It’s interesting, because I’m reading this book about a deaf community, and it had me thinking that I have never been addressed as a citrin deficient person. I think that that plays a big role in identity. I’m still grappling with it. I think it’s just something interesting to think about. If anything, the only thing I’ve been addressed as is a metabolic patient.

Looking back now, I would say there’s this kind of distance I created between my “normal self” and who I am when I’m low on protein. So, I think to some degree, that challenged my identity a little bit. It’s honestly hard to say how much my deficiency played in this role and how much COVID played in this role. Because I especially started thinking about my identity when COVID happened. I don’t want to make it sound like I’m blaming the quarantine at all, but it’s just hard not to think about it when you literally have nothing else to do.

Shaima: Yeah. Yeah, I think a lot of people shared that experience.

Carson: I would just say overall, one of the things I discovered about identity was that it’s hard to create identity without your community, which has been a big theme for me. Not only has my family been an awesome community for me, but also my martial arts school. It’s been something I haven’t really talked about. But like I mentioned, it’s been something I’ve been doing for 10 years.

And it was especially something I did a lot when I was in elementary school. But as middle school progressed, I went less and less and less. And then COVID hit around when I started going, like once a month, and maybe not even once a month. So it kind of progressively went from going every day to going less to not going at all.

One of the biggest things that I’ve learned as a martial artist is balance. There was a lot of thinking about how to maintain balance and improve yourself, but also liking who you are right now. That’s a really big thing, regardless of if you have a disorder, or whatever it is, that’s the biggest challenge. I think that’s something I really struggled with.

In seventh grade, I wanted to be like everyone else and be able to read a book in a week. That was the complete opposite of the philosophy that I’ve learned now, where I’ve learned to accept that maybe I am a slower reader than a lot of other people, but as long as I can understand the book in the way that I can, then there’s no need for comparison. Because at the end of the day, I feel more confident in what I can bring to the table.

Shaima: There was a lot of insight there. So, thank you so much for sharing. I guess what I’m hearing is that your experience, and you know, even yourself, your identity…it’s all kind of created by all of these different things. It’s affected by your community and by your lived experience of having citrin deficiency, but it’s also affected by finding this balance and liking yourself while still striving to grow. It’s definitely a balance I’m still figuring out; I think a lot of people really grapple with that. It seems almost like it’s just a constant work in progress.

It seems like you have a really amazing support system, and that you’ve chosen certain extracurricular activities that could help you build yourself up in a way that you want to grow and finding ways of managing the condition so that you can do the things that you want. As you were saying, you have to have a level of understanding for yourself and compassion for how the disease affects you whilst also taking ownership for things. I think that that’s really impressive. And it’s a very difficult thing to do for anyone really.

Carson: I don’t want to make it sound like it was this big thing but a big test to me looking back is, I was recently invited to leadership camp through a programme I volunteer for called “First Tee.” It’s a golf programme.

I didn’t really make a lot of friends when I was in elementary school. So, I think to some degree, you could say that built up some insecurities. I think I put a little bit of pressure on myself. But, when I was preparing for this camp, I had this idea that there would be these amazing people who’ve done so many things, and yet it didn’t feel like I had to add on things to myself to be on their level. Because at the end of the day what I’ve learned is just because they’re amazing at their level doesn’t mean I have to be at their level right now. So, I think that setting was a great opportunity for me to see if I repeated the same mistakes I made when I was in middle school.

Shaima: It sounds like that was a really good opportunity for you. I think the comparison thing is very easy to do. It’s a very natural human tendency. But I think, what you said is really great, which is that you found it inspiring. It was no longer this pressure on yourself to be like them, it was more like, “Oh, it’s super impressive that people my age have done these things.” instead of being like, “Oh, I have to be exactly where they are.”

I definitely wish I had some of this insight at your age. It will be helpful for other teenagers to hear about your experience. So, with that, if you do have any final piece of advice for anyone who is going through similar challenges?

Carson: I think some advice would be don’t try to prevent things from happening. Someone once told me that things happen for a reason. That kind of messed me up a little bit. Because, with that said…I’m not trying to get religious or anything, but I would think “Why was I given citrin deficiency?” You know? Why was I the 1 in 250,000? The point I’m making is, I wouldn’t be as strong as I am without my experiences. If you take out the times I lied, if you take out the times I was low on protein, even, I can tell you 100%, I would not be as strong as I am today. So let things happen as they happen.

One of the things I struggled with when I was younger was instant gratification. I think that’s something a lot of us struggle with, especially with technology. You could even look at golf, for example. An easy way to be a good golfer is to just write down that you shot a really good score that day. But ultimately, did you really score? Or did you just write down what you wanted your score to be? So, I think I struggle with instant gratification a little bit. And quite frankly, I still do. But I understand more about accepting the struggle, accepting the success I have, and everything in between.

So, going back to what I was saying before: let things happen. Because I think ultimately, that shows that you have trust in yourself. And that was hard for me. I think the reason why I felt I needed to lie and whatnot was because I didn’t trust myself. I also really think I wouldn’t feel that sense of identity if I was just the same person every day. What pushes me to be better and have different perspectives is the different people I meet.

Shaima: That’s super powerful. I loved what you said about identity being this dynamic thing – that you wouldn’t be who you are now, if you were just the same person every day. I mean, it’s like you said, it’s a process. And it kind of makes me think that identity is much less about who you are, in the sense of, like, putting yourself in a box, like, “I’m a person with citrin deficiency and I do martial arts.” It’s less about who you are, and more about how you live your life every day, and I think that’s a super powerful message to give. It’s incredible that you have such a strong community around you that’s really helped you to form this trust in yourself. Part of why I really wanted to do this interview is that I think that you also have the capability of helping other people build that trust in themselves as well. Especially given it is a rare condition, and a lot of people haven’t actually met anyone else who is going through the same challenges.

I feel like that is a good note to end this on. I’m looking forward to people, both parents and kids, benefiting from this and learning to trust themselves and trust the process that they’re going through.