He Knew She Had a Terminal Illness, But They Got Married Anyway

© Aldo Murillo/E+/Getty Images Bride and groom holding hands

By Jen Gann, The Cut

They say you can never understand someone else’s marriage. But this week, New York Magazine and the Cut decided to try. We interrogated dozens of couples (and a throuple) to see what makes their marriages work — or not.

Melissa and Steve, Married 16 Years

Melissa: My roommate had a friend in a band, and they were coming down from Toronto and playing in the East Village. I thought the lead singer was cute. He was in a bad mood, though, and didn’t talk to us, so I also thought he was rude.

Steve: I have no memory of her [from before] the night we actually met.

Melissa: A few months later, in February 1999, they came down again and my roommate asked if they could stay in our apartment. And I was like, they can stay here, but I am not going to see that show. Because he was rude! The next day I was in my apartment after work and he came in with his band. We just started talking, nonstop. I think he was impressed I knew the Beatles’ “She Loves You” in German.

Steve: I got her email address. I think the first email was like, “Hey, good to meet you.” Maybe I referred to something we’d talked about.

Melissa: It might have been about hockey?  We got really close during the email stuff. One day I got an email from Steve, and he was like, “Hey, my friend and I are coming down to visit,” and he wanted to know if he could stay with me.

Steve: It was a total ruse to see Melissa.

Melissa: I took him and his friend to Coney Island. I still remember what I was wearing: a dollhouse miniskirt and a thrift-store light-blue polyester sleeveless top.

Steve: That night we saw Southern Culture on the Skids at Bowery Ballroom. They threw their pieces of chicken like they do, or whatever it was.

Melissa: During the concert, he put his arm around me and I remember my friend looked at me and I looked at her and I was like, Oh, I guess this was happening. I guess Coney Island was fun?

Steve: After that visit, I asked her to come to Toronto. My memory is that I might as well give it a shot. I think I stared at the screen for a while before I hit send, though.

Melissa: We just fell into a relationship, I guess. I’d never really had one. I think I was always just too closed off, emotionally. I was 14 when my brother passed away, and I didn’t really deal with any of those emotions. I had a protective shell around me, and it was a long process of unwinding that.

Steve: She told [me] the first night we met that her brother had passed as a child, but she didn’t tell me from what.

Melissa: When I told him I had CF, we’d gone away for the weekend, to Niagara-on-the-Lake — the winery place, not the cheesy one. We were getting ready to go out and I coughed into a tissue and he saw it — it had mucus on it — and he was like, what’s that? And I was like, okay, here we go.

Steve: I didn’t know what cystic fibrosis was. Knowing that Melissa’s brother had passed from it … I mean, I obviously knew it was something very serious. But I also read about all the new research and medications on the horizon. It seemed like there was a lot of room for optimism.

Melissa: I’m sad to say why he didn’t know until then, which is that I was very noncompliant back then.

Steve: Luckily she could be.

Melissa: I guess so. Part of it was because my brother was so sick, I was considered a mild case. At that point of my life, I went to the doctor and all that, but I didn’t do my therapy every day. I just didn’t consider myself sick.

Steve: I still don’t really consider her, you know, sick. It’s not the way I think of her. I think of CF as more of an inconvenience than an illness.

Melissa: It’s a little bit more inconvenient for me, but yes. My parents raised us to kind of not think of it. My brother was applying for college, even when he was so sick. My brother was the one who told me that you could die from having cystic fibrosis. I think I was around 10. After that was when I started getting more anxious, about his health more than my own. He was always in the hospital. We’d go to the doctor’s office and they’d be like, “Okay, go across the street to the hospital.” He and my mom would end up being there for two weeks. As the years went on — which, for him, there were only a few years left — I started to worry more. Before I met Steve, I was having severe panic attacks. I worried my health could change on the turn of a dime.

Steve: I think the life expectancy was something like 36, at the time. I definitely felt concerned and scared. But I also knew that the average doesn’t necessarily mean it’s your story. It wouldn’t have occurred to me to stop seeing Melissa or anything, just because of this thing. We were long-distance for about a year.

Melissa: More than that!

Steve: No, it wasn’t.

Melissa: Yes, it was!

Steve: Fine, a year and a half.

Melissa: A year and nine months.

Steve: This is all because — well. She thinks I should have asked her to marry me earlier.

Melissa: It turned out he had this plan to move down here and live with me.

Steve: To make sure it worked.

Melissa: We shared a 550-square-foot studio.

Steve: But it didn’t seem small!

Melissa: No, not at all. We didn’t have any problems.

Steve: That was the test, I guess, and it was all totally fine.

Melissa: I think that was also around the time I really started doing my treatments. The physical therapist at my doctor’s office sat me down and showed me my pulmonary function test. It was at 48 percent. I didn’t know that I wasn’t breathing well — it was how I was used to breathing. She said if I didn’t start taking care of myself, the number was going to go down and down.

Steve: Having known how much better it would be for her health, I would’ve definitely been advocating for her to do it before. But before then, I didn’t realize it was an issue.

Melissa: After I bugged him for a while, we got engaged in February 2002.

Steve: We got married in November that year, in Toronto.

Melissa: I had always pictured marriage, kids. I talked about it a lot with Steve, and I talked about it with my doctor, who I thought was going to have a heart attack. She was supportive, but she was like, get your health up there. And I did it: I got my PFT [pulmonary function test] up to 60.

Steve: She had never worked harder at it than then. But that was probably one area where cystic fibrosis influenced us … it was like, we should do this as soon as possible.

Melissa: I was 29 when we got married, 30 when we got serious about having kids. Even though that’s not old at all, for someone with CF — my doctor was like, get moving.

Steve: Melissa’s doctors were great about not limiting her, though. They were like, “You want to have kids, no problem.”

Melissa: Well, not exactly “no problem.”  We worked closely with the geneticist at our CF center. For some women with CF, pregnancy is an issue, but because my lung function was up, my airways were clear. Some of my friends with CF adopted or decided not to have kids, because they worried it would be too much. I was just super determined. Or crazy, I don’t know. We have two now, three years apart. I found it hard, with two, especially when I was alone. Nursing one kid and then the other kid starts going crazy because they want attention, and not being able to move. And for me, I do my treatments twice a day — more time where you can’t move. There was a lot of frustration on my end.

When my kids were little, I refused to go to the hospital. I did some home IVs. I’ve always been very open with them about what I have, but without really getting into the details of the bad stuff. But they know it as a chronic condition that I’m living with.

Steve: Day to day, it’s more like — mom has to do her machine.

Melissa: It’s more annoying than anything. My son used to complain that he couldn’t hear the TV over the noise.

Steve: I do think that over the years, there’s been gradually more conscious fear and anxiety.

Melissa: They’re older. They know more now.

Steve: On the rare occasion that Melissa is in the hospital, that’s when I get a little discombobulated. I get very tense and anxious. I’m just sort of more useless, overall. I drop things. I’m klutzier than usual.

Melissa: My doctor has talked me off a ledge many times, but I still have that fear of things changing really fast. It doesn’t help when you see situations where it does. There have been a few people that have died over the past year, whose deaths have been oddly unexpected, for people with a terminal illness.

Steve: There was one time when I needed a little more clarity from Melissa’s doctors, about how life expectancy looks. They let me know that things won’t take a turn at the drop of a hat — it’s much more gradual than that. I found that reassuring, because she takes such good care of herself now.

Melissa: The only time I feel guilty is thinking about how I don’t work. My work is my health. The only time I really feel that is thinking about how I can’t contribute more.

Steve: I feel bad that she feels that way. She contributes in so many ways, and it’s important for her to know how valued she is, not only in our family, but with the advocacy work she’s doing. She’s such a contributor.

Melissa: I have this fantasy that people don’t think about me having CF, though.

Steve: Do you think they don’t?

Melissa: There was one person who drove Steve crazy because every time he’d see this person they’d put their hand on his shoulder and be like, “How’s Melissa?” Or you know, you encounter the rare moron — I met this doctor and told her I had CF and she just looked at me and said, “Why are you alive?” And I was like, “I don’t know, why are you?”

Steve: Sometimes I love those questions, because they’re so honest.

Melissa: Even though we don’t dedicate too much thought to cystic fibrosis — it’s not easy. It is still a big deal. But it’s all in how we choose to view it, and deal with it.

Steve: I wouldn’t say that we’re optimists for the sake of coping with this, though. I’d say we’re optimists because we’re optimists.

Melissa: My 20s were a significant time for me. I kept coming up against the life expectancy and, luckily, passing it, but I was still thinking things like … maybe I’ll hit 26, get really sick, and then die. Thirty-seven too, that was a hard year. But once I passed 37, I just felt like, phew. And at that point, I had two young kids. I’m 45 now.

Steve: Best case would be if there’s a cure found very, very shortly, and we could stop worrying about all the extra stuff we worry about it. We could start planning things differently. But truthfully, we already do that.


Made with in NYC

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News: He Knew She Had a Terminal Illness, But They Got Married Anyway
He Knew She Had a Terminal Illness, But They Got Married Anyway
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