Brothers Julian and Caeleb MacDonald share how growing up with severe hemophilia A shaped their experiences, family dynamics, and sibling relationship, while emphasizing that their condition is only one part of who they are.
Transcript
Julian: Hi, my name is Julian. I am a singer. I am 29 years old. I was diagnosed a couple weeks into life here. So we’re going on 30 years.
Caeleb: Hello, I’m Caeleb MacDonald, and I have severe hemophilia A ever since I was born about 20 years ago. I am an artist and filmmaker, going to college to get a degree and get into the field for it.
Julian: Did we speak to each other growing up about hemophilia?
No, we didn’t talk. We had such — we’re 10 years apart, so we had such drastically different — we have the same type, same severity, but also because hemophilia is very specialized to the person, we also had drastically different experiences with it.
At no point in our relationship did I ever even consider hemophilia. At no point was I just like, “Hemophilia is getting in the way.” No. If anything, I thought hemophilia was annoying because I couldn’t get away from you.
I was there in the hospital for those months on end.
Julian: Yeah, I guess on my end, I always felt really guilty about how much attention I naturally would, like, have compared to you because of all the times I would have to be hospitalized.
Caeleb: Mom and dad were the same way. They were so concerned because they kept checking back in with me because my parents — even though I just gave them a pretty rad there — are pretty solid parents, and so they would keep checking back in with me, trying to make sure that I knew spiritually that they didn’t, like, love one kid or the other more than the other.
They just — this one needed more attention at the moment. And Also, I remember thinking, this is so annoying because I genuinely like not being the center of attention in this regard. Like, no, please go to him. I’m great. Pick something up on the way home.
Caeleb: Let me lurk in the shadows, man.
Julian: I’m good.
I feel like most people with hemophilia can have touchstones. So, yeah, I’ve never been hospitalized as much as Caeleb has. But I know what it’s like to get a bleed. I know what it’s like to have an earth-shattering bleed. I know what it’s like to get hospitalized.
I know what it’s like to do these things, just not to the same frequency. There’s touchstones I can relate to. And so at least as a result of our relationship, especially with parents who don’t have it, who don’t have a history of it, at least as far as — I don’t know if I’m speaking for you here, Caeleb, but at least in my approximation of our relationship, I simply don’t think we think about hemophilia very much.
Caeleb: Yeah, we really don’t.
Julian: It’s just I have always been this way. So what? Your normal might change. Their normal is this. I want to say for the first 15 years of figuring it out, it’s going to be a roller coaster, but then it slows down.
It only takes 15 years, and you got that to burn.
Caeleb: If I had to share anything with any families or siblings with hemophilia out there, it’s kind of similar to what, what Julian said, just about how even though, like, we have a similar condition, we are bound to have very different experiences and very different severities.
But despite, like, how radically different our experiences are, we still don’t really talk about it. Not in the way that we’re ashamed of it or anything. It’s just, I guess for us, we don’t really want to truly identify ourselves by just our condition alone and kind of have people that understand what — even an iota of an idea of what we experience — and find comfort in that we’re able to just, like, subtly understand, but talk to each other as if we’re just as human as anyone else can be.
