First published in Good Weekend in 2011.
JANE: I met Jon at a work Christmas party. One of my colleagues said to him, “Be careful of Jane; she’s dangerous.” That piqued his interest. My first impression was that he was confident and smooth – almost a bit too smooth. The second time we met he told me he had cystic fibrosis [CF]. I knew a bit about CF and I knew there was the chance he could die, but it just seemed so remote. Back then, he was working full-time, we were going away on trips, out for dinner and dancing, doing 10-kilometre runs; we were very active. Yeah, he had to do nebulisers in the morning, and on Sundays I would put his pills in little boxes to make sure they were sorted for the week. But CF wasn’t inhibiting him.
Then, in late 2006 – about a year after we met – he came home from soccer one day and said, “Oh, I’ve buggered my knee.” He needed surgery. A week after that, double pneumonia hit, and all of a sudden there was a whole different world, one I hadn’t even contemplated or expected. He started hallucinating and it got very, very scary. And I remember waking up about five in the morning and he was really struggling to breathe. So I rang the clinician and she said to get an ambulance now.
We talked about transplant later and he said, “No, that’s not something I would do.” And I was quite shocked. Would he just let himself die? What about me? But he started to change his view once it was clear we were heading down a road where things weren’t going to be very rosy. The idea that he was going to die was placed right in front of him. In January 2008, we were in town one day and he was having difficulty walking up hills and he said, “This is it, I think.” I really panicked. In March, he went on sick leave from work and we started to think about getting on the transplant list. He was just having more difficulty doing things and getting out less and less. Our whole world was collapsing around us.
Right in the middle of this time he asked me to marry him. To me, CF was always part of who he was. So if I chose to be in a relationship with him, then I chose to be in a relationship with someone with CF. We’d just deal with it.
Jonnie lives life to the full. His sheer bloodymindedness and will power are amazing. But after transplant, he was so drugged up and the painkillers were sending him loopy. At first he didn’t enjoy breathing and was having panic attacks with the new lungs. He said, “God, I feel worse now than I did before the transplant.” And I was thinking, “What on earth have we done?”
Jonnie likes to say I avoid hard things and that sometimes I don’t talk about what I’m feeling when we’re going through difficult medical issues. But I just focus on what has to be done and not what could happen. He can be very demanding. Demanding about me telling him how I’m feeling. Demanding about making sure I’m on time. Demanding that we treat the relationship with respect.
We don’t sort of plan things for the long term. We plan trips for next month rather than next year. It’s easy to start saying, “No, we’re too busy with work.” But then we shake ourselves and say, “No, we should be doing all of these things now because you never know.” I don’t want to look back and say I wish we had done this or that.
JON: My first impressions of Jane were that she was bubbly and a lot of fun. We had a rapport immediately. I was attracted to her attitude, the way she was embracing life; there was a lot of common ground there. We talked about CF early. But I suspect if you had asked her in those days, she would have had no clue about the trauma we were going to face in a short time. Yeah, there were limits to what I could do, but for me it was always, “What can I do and how can I do it?”, not “I can’t do it.” I guess sometimes I’m more blasé about taking risks with things and Jane’s like, “No, no, don’t do that.” But we never come to blows over that. She recognises that it’s my life to choose. But I recognise and respect that she has an input, too.
It has been a very intense four years. I still don’t know how Jane coped with it. One of the particularly bad times was just after the [transplant] surgery when I didn’t wake up for four days; she still won’t engage in a conversation about that because I think she was really wondering if I was ever going to wake up. I think one of Jane’s positive attributes – that can also be negative – is that she tends to block out things that are tough and troubling and just get on with what’s in front of her.
Transplant was a pretty confronting situation, but she was there, sleeping on the couch by my bed. Sometimes I’d wake up at three in the morning with a panic attack, hallucinations or claustrophobia. I would yell, “Janie, Janie, please wake up, wake up now, open the door of the room, now, now, now!” So she would get up, open the door and just sit with me.
The thing about her is that there’s no falseness. I can be totally honest about how I’m feeling and what’s going on with me. This is just life and this is what we’re involved in and we’re going to deal with it together. She’s there for me 100 per cent, like in the hospital as an advocate when I just wasn’t capable of advocating for myself. There’s never, never even a scintilla of wavering.
The unhappiest I’ve ever seen Janie was when I had a medical emergency team call because my heart went stratospheric after transplant and the nurse put an emergency call out. Within two minutes, about 30 people descended on the room and, poor Janie, she freaked out. They had to take her out of the room.
We have had so many happy times with each other, especially the little victories, like coming home from the hospital and even just walking through the supermarket together for the first time. Every once in a while I might talk about the fact that transplant isn’t forever, that there may come a time when rejection will set in, but Jane doesn’t like talking about that sort of stuff. Anyway, it’s all about the here and now for us and just trying to make the most of the time we have together. Because life is all about living, and it’s even better to have someone there riding alongside of you.