How has the experience of Jacob being ill changed your definition of love?
I guess it’s less about describing a definition, and more about what love did to me and what it feels like: like the reverberation of a hum when you wet the top of a glass. Even in the worst moments I could feel this hum of feeling for Jacob. What I learnt is how much I loved him, how much I felt for him, and how strong the hum was.
It wasn’t just the hum of love I have for him, either. It was the incredible love people had for our family. I learnt that love is an interest, a desire, a fascination. It’s a passion for something. Even in the worst moments, Jacob kept my interest. I had an absolute focus on him, and that never shifted, which is strange, isn’t it?
When you had to care for him, you compared the love to parental love. That made me think about how much parental love requires you to give, without any expectation that the other person should give you something in return, but it’s not something we face often in romantic love.
Yes. And I think what you’re talking about is something unconditional. And actually, with a [romantic] relationship, we do bind that with conditions. What was interesting with Jake becoming so ill was that my love for him was beyond him as my partner — it became about him as a human. That’s one of the things I’ve been profoundly left with: I feel more connected to how fragile we are as individuals, as units, as families, and as humankind, without sounding too Hans Christian Andersen about the whole thing!
It must have been incredibly difficult to care for him when he didn’t recognise you, because so much of love is about being seen and known. It’s extraordinary that that hum of love was sustained, even though you weren’t being seen during that period.
When I had children a thing that no one told me was that I took the most vulnerable part of myself and gave it legs. I kept on seeing aspects of myself in my children. But then you come to realise that they’re their own people. That’s the great reveal and release: the ownership changes, because they start to crawl, then they walk, then they talk, then they eat and go out and party and fall in love with someone else.
And actually, the strangest thing is it wasn’t dissimilar to the process that happened with Jacob. I do feel like my love for him has shifted through this journey. It’s always been a constant in terms of my care and devotion to him, but it has been like falling in love again; first with a child, then with a teenager. Now, I think we’re somewhere in our early 20s.
When you found out you had breast cancer, was it particularly difficult not to have a partner’s emotional support to lean on?
I would be lying if I said I hadn’t been angry and didn’t at times feel hugely venomous in the situation, but Jake was so obviously trapped and lost, that what I saw [in him] was almost a reflection of what we were all feeling.
I had a big chart on the wall in our kitchen when Jacob first came back, filled with velcro pictures we’d made so he could start to plot his day. Watching him try to work out what breakfast was and how that worked in the day, reminded me that to deal with the complexities of what I was going through was overwhelming to him. What I would say is that I went through an experience that he missed.
What do you think kept you from leaving in the very difficult times?
Interestingly, I worked on reminding myself that I had a choice, that we always have choice, and not to hide behind the feeling that I didn’t. I started to realise that the most important thing I was trying to do was to bring Jacob back into the world, and I wasn’t completely on my own in that. There was a community of us trying to restore his life so that he could be a father, a brother, a friend. It became much bigger than just him and I.
In terms of our relationship, I do think something was severed the moment he didn’t know who I was anymore, because that was resoundingly sobering to me, to know that the thing that makes up ‘us’ and our connection is also cognitively driven. To know that if the brain can be damaged so can the relationship, and somehow our life together was contained in Jacob’s brain.
Did you have to grieve the old version of your relationship to build a new one?
I’m still grieving it. It’s the strangest kind of living grief. Sometimes it’s more agonizing because he’s there, and he’s present, and so much of him is back, that I miss that intimacy and connection we used to have. I’m learning to accept and to rejoice and come to terms with what we are now.
There is an Ann Patchett quote I love, about studying and remembering small moments of happiness so they become the foundation of love that will shelter us in later years. Although he lost his memory of you, did your memory of him, of your relationship, sustain you through that time?
Hugely. Our past was interwoven literally in the fabric of our house, genetically in the fabric of our children, socially in the fabric of our community and friends, and physically in the way I knew Jake’s body and he knew mine.
Our shared sense of humour really helped, too. As you said before, when you fall in love it’s because someone is really seeing you. And when Jake stopped seeing me, I made sure that I kept trying to see him. Because I knew if I kept on looking at him, eventually he would look back and see me. Somewhere in this pool of damage there was still a memory of me in there, and the connective tissue would be if he could make me laugh. When I noticed he started to enjoy doing that, it became a key part of our day, and it still is. Humour is how we reconnected.
What about the moments of uncertainty, when you didn’t know how much of him would ever come back?
You live day by day. There were periods while Jacob was in intensive care when we weren’t sure if he would live. What I held onto was his physicality. You don’t realise the private care we give our bodies that our partners never see: we shave our legs, we dye our greys. So after six or seven months of watching Jacob lie in a bed I thought, god, I didn’t know you had hair there. Then I started to remember every detail of his body. I held onto the physical shape of him even when I lost him emotionally, even when he wasn’t consciously there.
Did you have to make an effort to see the new version of him when he woke too?
The irony was he didn’t know who I was, and now I’m trying to understand who he is. He’s made extraordinary leaps: he’s got so much of his wit, his humour, his charm and his expression back. (He was very blank faced with little emotional reaction, certainly for the first year.)
As I said before, although Jacob was there physically through the cancer, he didn’t entirely understand what was going on with me, so I’m now telling him the story of what happened. It’s a process for both of us: for him to understand where he’s been for the last year - it’s four years in June since he collapsed - and for me to understand who he is now. I talk about being like an archeologist, brushing off dust; that’s what it’s been like with Jacob. We’re brushing off bits of the story together.
Last week, we went away and had a wonderful time together, chatting and talking and eating and hanging out. I was so grateful that we’ve gotten to do that again, because I didn’t think we ever would.
Do you think it’s made you better at loving, having to learn to know him again?
Totally. The other thing is, I had to remind myself of my identity, because when you have someone saying you are not who you say you are, then you really have to ask, well, who am I? As I watched Jake try to refind me, I was also trying to reclaim myself.
And on a practical level, realising you lean on your partner for certain things, and suddenly having to learn how to do them instead?
You do find yourself going, where the hell are the lightbulbs?! What is the password to that? Now I would absolutely make sure that there’s a box of everything you ever need in case the other person isn’t there. It’s shocking how much I assumed Jacob would always be there, how much of my responsibility I’d given up. Now I appreciate the things he did, but I’ve also been relieved to find out that I can do them.
Another thing is I’ve always been the main breadwinner and Jacob stayed at home. When I asked my children about their five favourite memories in life, I realised I wasn’t in one of them, because I had been working. But with Jacob being ill, I’ve reclaimed and spent time with my children again, and that’s been incredibly precious, to get those four years back that I would otherwise have spent submerged in work. Jake and I used to joke that I could sit in a room full of eight Hollywood execs and pitch a film and barely break a sweat, but having to organise a children’s birthday party would give me a nervous breakdown. So that’s been interesting, getting to renew my confidence and ability to be with my children. The truth is, they became my absolute buddies and running mates in this situation.
My kids know that I’ve raged, they have seen my heart break. I remember a therapist saying, it’s okay for the kids to see the conflict but they need to see how you recover from it. And I think that’s what I’ve always tried to show them, how we recover.
You were honest about feeling angry at one point when people were sharing their ownership of Jacob. Did your idea of love expand during that time?
The thing I disliked about myself more than anything was how passionately territorial I was over Jacob. Love is expansive, not singular, and that’s also part of understanding that when two people bring their lives together, they also bring families together. They create a history together, but they’re also individuals. It made me realise how many connections and relationships Jacob had beyond me, beyond us, beyond the notion of our family. And they were all valid.
Has it changed what you feel matters, too? You talk about bickering earlier in a relationship…do you fight less about little things now?
I suppose at its simplest, I have a much stronger sense of our mortality. God, if we get another five, ten years together, that’s pretty damn good. There is a simplicity to my life now about what I need and want to hold onto. I don’t want to start to Google my name again to see whether or not I’m relevant in the world because of how many shows I’ve got on. I want to think, am I relevant because I mean something to someone? I want to think, Jacob and I had a nice supper together, I got to stand on a mountain with him and look at a view. I know those things sound whimsical, but I want to hold on to them, because I know how easy it is to forget that all of this isn’t a dress rehearsal. This is it.
Do we bicker less? I guess so, mainly because Jacob doesn’t want to argue, it’s not that interesting to him! Bickering is sometimes a way to keep energy going between the two of you, like batting the ball back and forth. Of course we still sometimes do it– who doesn’t? – but I wonder if that energy could be used somewhere else. I’m more interested in the energy of living.
I’ve suddenly woken up and thought, okay I’m 53 and Jake’s 50 this year. This tragic thing was part of our lives, but what’s next? It’s something I’m thinking about a lot, and encouraging Jacob to think about. Don’t be intimidated by the world falling apart. Be empowered by the fact that you learnt how to put it back together again.
What do you wish you had known about love?
I wish I had known that nothing is wasted; even the bad love affairs have been useful. And that to be fearless and to open your heart is really what life is about.
I spent a lot of time trying to be cool, trying not to admit how much I cared or felt about someone. And when I suddenly felt I might lose Jacob, I could have beaten down any door to try and save him. That level of passion for his life... there’s nothing wrong with that. So I wish I’d known to live in a more openhearted way, and to not be afraid of life going wrong. Because even when it does, you sit with it, and it becomes useful, and it will push you into the next thing.
I basically think people are good, people want to love, and all those whimsical phrases about love conquering all, well, it’s true. So choose love. I suppose that’s what I would say to myself, choose love.