Cystic Fibrosis and ‘Five Feet Apart’

Maisy Millwater and Liz Breslin

Maisy Millwater is 14 years old and lives in Hawea Flat, New Zealand. She and her brother, Stan, have Cystic Fibrosis (CF). Here she talks with Liz Breslin about the newly-released film, Five Feet Apart. The film (adapted from the novel by Racheal Lippencott) follows Stella and Will, two young people with CF. The film’s title refers to the distance CF patients are advised to keep from one another in order to prevent cross-infections.

Liz Breslin: So, Five Feet Apart … did you like it?

Maisy Millwater: If I didn’t have CF I probably would’ve, but it reminded me, kind of. It didn’t give me much hope for my future. She [Claire Wineland, who consulted on the movie] died last year on the second of September, which is the day after [Maisy’s pet dogs] Evie and Obi’s birthday and the day before my friend McKenzie’s birthday.

LB: So if you didn’t have CF you would have liked it, maybe. But you’ve never not had CF, so how do you know?

MM: I had a doctor ask me once, how long have I had CF for. [Huge laughter.] I was like, um, it’s genetic. [Huger laughter.]

LB: What did the doctor say?

MM: I can’t remember but I was just like – [face palm].

LB: Okay, so let’s imagine you’re one of those people just watching the movie, what would you think of CF? What did they make CF out to be like?

MM: They just made it seem like everyone with CF had a shit quality of life, which to a certain point yes, but no because you can still do everything everyone else does, in moderation, unless you get a bad bug – the b cap, capecia, thing – can’t say it right! [Burkholderia cepacia complex (B. cepacia) – who can say that?] I wouldn’t say any of it was wrong, but everyone with CF is different. For me and Stan it’s not like a gonna-die-tomorrow kind of thing, which they kind of tried to make it out to be, like all CF people can die just whenever.

LB: Like [SPOILER ALERT] what happened to Poe in Five Feet Apart. Because it seemed like he just died whenever.

MM: He didn’t chew his food.

LB: Is that a CF thing?

MM: We have smaller airways. So it’s probably easier to choke. It’s kind of like having constant asthma in a way, but not. But it’s not like I’m going to be running around having a party with friends, get home, have some lasagna and choke and die. It’s not like that.

LB: Life is not like that?

MM: Yeah, and not even life for CF people. But it doesn’t exactly show how he does die. But it was quite cleverly done that they made it about CF and also a love story. I would say it was perfectly balanced out, because it wasn’t like oh CF CF CF and a little bit of romancey stuff, and then more CF, it was kind of like you would watch it if you didn’t want to go see something about people dying. And there were mostly nurses and not doctors, and that’s how it usually is. The one doctor acted more like a nurse because she was really nice.

I reckon it could have been cool if they had actual actors with CF do it because they could have done a better job, but then maybe they wouldn’t have wanted to get that close.

LB: Some people have compared it to The Fault in Our Stars. Sick Lit – have you heard that term? Where people love it because it’s a story about people who are falling in love but also dying at the same time and then it makes them feel really good about themselves because they’re healthy.

MM: That’s a bit sad.

LB: Do you know any CF love stories?

MM: No. You don’t even go near people with CF. When you first arrive in hospital you ask if there’s anyone else with CF or any bad bugs and if there is then you just stay in your room and if there isn’t then you can go in the playroom and stuff.

LB: So would there be more than one person with CF on the ward usually?

MM: In Invercargill, there’s only been one other kid with me and Stan there, once. But I’ve never actually seen him.

LB: Some people are boycotting the movie, saying that it’s really irresponsible, that it’s not good or fair to encourage people to not be the five, six feet apart.

MM: People are so boring, what the heck?! You do you. The thing that bugged me most about that movie is they could have been closer if they were wearing masks! I just don’t understand it.

LB: So if you’re wearing a mask it’s fine?

MM: It has to be a good mask, like sealed all around. I’ve always been told just to wear a mask if there’s anyone else with CF around … which I don’t always do. Like I’m normally on all the antibiotics that will kill the bugs anyway and it’s not like, say, I’m in Dunedin and walking down a street and someone with CF walks by and coughs – it’s not like I knew they had CF, it’s not tattooed across their forehead.

LB: What else?

MM: It was weird how their parents weren’t there. Like they didn’t even really play a part in the movie, I’ve always had a parent there. They’ve always been there the whole time, apart from when I’m in surgery. But then I’m asleep so …

LB: Do you think that’s usual?

MM: I’d hope it’s usual, but then they were like 17, 18 [years old in the movie] but still … hard to know … but I wouldn’t want to go without a parent. Because it’s scary. People come in in the middle of the night saying you need to do a blood test and it’s like, no, wait till the morning please, I’m trying to sleep.

LB: And what about the medicine trolley, how she had it all organised?

MM: I don’t know, I’ve never seen one of those.

LB: So do you think it’s not a New Zealand thing?

MM: I’ve never heard of that, like, when we have to take Creon, sometimes the nurses want to bring it every time before I eat and then I have to ring the bell, when I could just take it myself and be responsible for it. It’s not like you can overdose on it either. It’s not gonna make you sick. I mean, I dunno, I’ve never really felt like I need to take a whole tub of it.

LB: So the thing about other people’s reactions – and this is why we started this, isn’t it? – you thought other people were going to watch the movie and pity you. What do you think about that now that you’ve seen it?

MM: Well, it hasn’t come to Wanaka yet so I’m not sure. But I feel like when I’ve told people about CF, or when they’ve asked, I’ve always tried to make it seem as not-bad as possible because I don’t want to talk about it. And when people say I’m so sorry I want to say thank you but you can’t actually fix it. It depends on what kind of person it is. Some people come up to you and start talking to you about it and say all the wrong things, and some people say all the right things. My friend saying she wished she had CF so she could go to LA, that was a wrong thing. When someone asks you about what it’s like for you as a person, that’s a right thing. But when someone thinks they know everything about CF now in their own head because they’ve seen that movie, and then they come up to you and start talking to you about it and you’re like it’s not like that for everyone and it’s definitely not like that for me.

LB: Is there such a thing as a typical CF story or are all of them so different?

MM: Stan’s definitely got a better form of CF than me. I have to go to hospital more and my body goes into shutdown sometimes and he goes to work every day and then I can’t go to school for a full week.

LB: Do they make you do the staying apart thing when you’re in hospital together?

MM: We stayed in the same room last time. It’s just bullshit if you think you can make two kids in one family do separate kitchen, separate bathroom, separate everything. Like, everything. It would be a different way of life.

LB: Have you ever thought about doing all that vlogging stuff like she does in Five Feet Apart?

MM: Yeah but there are people out there who are genuinely interested and people out there who would watch it because it’s just something to watch to make them feel better about themselves like the Sick Lit thing. I would do it but I also really wouldn’t. I think if I did it for myself, it would make me understand CF better. But I can’t really cope with the whole ‘people can say whatever they want about it’. So, no!

LB: Let’s say you were going to do it but not have to cope with the people. What would be your main thing you would want to say to people about cystic fibrosis?

MM: That you should be grateful about the movie because it’s raising awareness – and, sure, it’s not the right type of awareness, but at least it’s not another movie about cancer.

That the doctors should try not to ask the same questions everyone else asks. Like every time they come in they make me put my fingernails together and say oh yeah mild clubbing and I turn away and smile, like wow, really, no one’s ever told me that before.

And that it’s not like … you’re not counting the days till you die. You just do everything you can and sometimes you have to spend a whole day in bed. And you do. It’s just life. I was reading quotes the other day and one of them said something like “It’s ok sometimes if all you did today was breathe”. That was relatable, kind of made me feel a bit better. Because there are days when all I do is sit in bed and do nothing and get up and eat and go back to bed, but … yeah.

---

Maisy Millwater is 14 years old. She lives in Hawea Flat, New Zealand, and likes animals, watching movies and eating popcorn.

Liz Breslin writes poems, plays, stories and things. She is looking forward to going to Krakow in September 2019 as a UNESCO City of Literature resident writer.