Hi Cathy! Thanks for speaking to us. Let’s start with the title of your book, why did you decide to call it The Last Act of Love?
Well for ages, I didn’t have a title for the book – or not one that I thought was any good – so for a long time I wrote and wrote and wrote and wrote, and just thought “I have no idea what this is might ever be called.” But then of course when I started writing it, I didn’t think anyone would see it anyway. So now I do think the title is the most beautiful thing; it comes from my mother, and she said “this is last act of love for Matthew”. And it continues to have meaning for me, because people often say “oh does ‘the last act of love’ refer to the book?”, which I didn’t really think of, but I suppose it does; but what I also see now is that the real last act of love for people who leave us, is to try to live well without them – so that’s become another meaning for me.
The lovely thing about writing a book is other people tell you what they think of it, and then you think, “well yes, that hadn’t quite occurred to me!” I do feel that with it; I feel like for me, the book is like the first bit of a conversation, and when people talk back to me, I often learn things or think about things that I hadn’t quite thought about before.
So has sharing your story given you the opportunity to talk about the important themes behind it? Has it given you the opportunity to have those conversations?
Very much. I get so many letters from people, and people come to talk to me at events, and I find it astonishing because it feels incredible to me that somehow I’ve managed to transform all my pain and misery into something that is useful for other people – and that really does feel like a miracle. I love to hear from other people and I really like their stories, it’s very interesting and it’s beautiful. I hear from people whose relatives are or have been in the same physical condition; but I also hear from siblings, from people who have lost their siblings, and it made me see (I don’t think I realised when I was writing the book) it really made me see how sibling loss is very unexplored. And from hearing from all the other siblings, I now feel I’m in a little network, I call us the Accidental Only Children, and it’s very sad, being an accidental only child; but I feel very heartened by knowing these other people – it’s like a bond, and that makes me feel very comforted. The other people I hear from – and I never would have anticipated this, and would never suggest this to anyone, but people say this to me – people write to me whose loved ones have died outright, and said that reading my book helped to show them that it could have been worse. Now I would never suggest to somebody that that would be the case, but I’ve been astonished to see how many people have found my story consoling, and it enabled them to see the sudden death of the person they loved in a different light.
When you started writing the book, it was more of a personal thing. Did you speak to other people who were affected, and did that have an impact on the finished book?
Well one of the miraculous things that happened when I wrote the book was that I did start it feeling like it was just me; then part-way through the book I just decided to steel myself to do some research, and I found these wonderful people called Jenny and Celia Kitzinger, who are running a wonderful research project where they’re collecting testimonies from the families and friends of people with what they call a Prolonged Disorder of Consciousness; so that’s a persistent vegetative state, or a minimally-conscious state, or even a step down from that is called severe neurological deficit, I think is the term. And I went to Cardiff and I was interviewed by Jenny and it was the most amazing experience, because she’s so incredibly kind and thoughtful, we talked for about 14 hours and it was just astonishing, and it felt so good to talk to her. And being involved in that project I met lots of other people, and that also felt really good – and I like to feel useful, so one of the physiotherapists who is involved in the project takes video clips around of me now, so when she’s training other people she plays me talking about it. Sometimes she’ll drop me an email, you know: “I’m off to a conference, with you!” So I sometimes think all of life is about realising that you’re not alone, in loads of ways, and that’s one of the big things with the book for me, is realising that in lots and lots and lots of ways that I’m not alone.
What have you discovered from sharing your experiences with those who have been through similar ones?
I wrote a piece about being a mother, in which I admitted some of my nasty, slungey stuff that you feel ashamed of as a mother, and of course everybody in the world just said to me, “thank you for saying it! We all feel the same!” So there is this real thing, if you can just be brave enough to talk honestly about what you feel – all the things I feel bad and ashamed about – then I find other people say like “oh, thank heavens, that’s exactly how I feel”. So it’s a really virtuous thing, it makes me feel better to say it and then other people say “me too” and then it makes me feel better and less alone because they’re saying “me too.”
So I think all of it is very interesting and I’ve been thinking a lot about how I’m trying to live honestly and authentically, because you get great benefits I think from being honest. I realised I put so much effort into trying to hide the bits of myself that I don’t like from other people, but actually, most of it’s not that big a deal. And I see it with other people as well, we all think we’re terrible people, everybody worries deep down that we’re just terrible – you know, if people knew what we were really like, they’d all run away – but actually it’s not true. It’s a very short trip from saying out loud the thing that you think is terrible, to actually finding it quite funny that you were that bothered about it! So yes, sharing fears is a good thing to do.
So what’s next for you – are you going to carry on writing, or campaign more about The Last Act of Love, or a bit of both?
Yeah I’m gonna carry on writing, I feel like I’m a very unlikely campaigner. I feel I offer myself as a case study, I’m happy to have told my story, and I’m happy for other people to use it, but I’m very clear on the fact I don’t feel I’ve got any answers at all. It’s a whole big complex area, I’ve written my book as a testimony and then people can do with that what they will – and that I feel is what my role is.
I would like to write other books. I would like to ultimately think that this bit of my life – in the whole context of my life – could be less significant than it is. I still feel stuck there, you know, when people ask me how long ago it was, I don’t really like to tell them because I always worry that they’re thinking “shouldn’t you be over it by now?” – you know I’m just not, I’m just stuck. But I think that ‘stuckness’ is all to do with the gap between the accident and my brother’s death. So I think that obviously he should have died that night, and that would have been a tragedy; but I think the reason why I’m so mad, and so stuck in that place, is because of the eight years that followed the accident, because of the fact that I was involved in his death, I had to work to bring about his death, and that’s something that as a society we’re just not set up for. If his accident had happened even ten years before it did, he probably just would have died that night. I was reading recently about Victorian etiquette around grief and death; they didn’t have to worry about any of this stuff, and we all have to worry about this now. And that’s what I feel I’m evidence of – that it’s not just like a set of laws, our little caveman brains are not capable of having to work out what to do when somebody should die but doesn’t.
Henry Marsh wrote this wonderful book called Do No Harm, and he says in that that it’s really easy to save a life with emergency brain surgery, you just drill some holes and let out some blood; but the big question is whether or not you should save a life and it’s whether or not a life is a life when all there is is a beating heart and a deteriorating, brain-damaged body. So, I think I started that answer saying I need to care about other things, then went straight back into re-iterating why it is I care so much about that!
I think it’s always going to be important to you.
It’s always going to be there. I did this event recently and I needed to do some images for a big backdrop, so I did a Google images search of myself. And pictures of my brother are threaded through my Google images, which I love that. I just love that he is. And I was thinking a lot about it – because everything that happened to him was before the internet – so I think sometime after Google was invented I kind of tried his name, and didn’t get very much, whereas now if you try his name you get loads! I feel in that way – possibly not tremendously psychologically healthily – I feel like, “yes! He’s alive on Google images search!” So I made this backdrop, there’s picture of me not in context with him, you know there’s pictures of me chairing events, and doing other things that I do, and there’s a lot of pictures of me with him: the book jacket or other pictures of us that have been used when I’ve been interviewed. And I thought really what should happen now is hopefully I’ll live a long and prolific life, and hopefully the percentage of him in my Google images should probably decline; and that’s probably a good thing. Hopefully, by the time I’m 80 and have written loads of books, he should possibly be slightly less present in my Google images. I think that’s what he would want.
One of the best things for me about writing the book, was that I had lost a sense of him – so him as he was, was buried under the eight years of brain damage – but I now really feel I’ve got a sense of him, and I hear him. I don’t mean I hear the spirit of him – though I always say if it is really you, then don’t go away – I suspect it’s just in my own head, but whatever, I’m really grateful for it. So he pops up to offer me all this unsolicited career advice, like “what the f**k are you worrying about that for?” but he quite often pops up to say like, “will you just f**k off and go and think about something else?! Stop thinking about me, go and do something else!” [laughs] So I do feel he cheers me on, he’s trying to say to me “go and do other things,” ‘Stop, go on, shoo, shoo!” and I imagine him shooing me away – but that’s all very good, actually.
That’s lovely, you’re almost carrying his personality with you…
Yes, and I realised as well – this will make me cry, but in quite a happy way – that obviously my grief is for him and that I lost him, but I do also grieve my loss of self. And thinking about him actually helps me remember what I was like, and that I was bolshy and stroppy, and probably quite annoying; and I wasn’t frightened and scared of everything. So I’m trying to get a bit of that back, slightly with his help. Remembering him helps me remember how I was before all of this, which is very difficult.
One of the reasons why I thought I could never really properly write a rounded book was because I just thought I’d never be able to remember a version of me to whom this had not happened. And now I kind of can, and I feel I’m sort of getting a little bit back. Of course you can’t, I’ll never be that person, so it’s some weirdo trick of accepting the experience but also trying to think, “what did I like before this happened?” Somebody asked me, “what gives you pleasure?” and I just don’t know, I had no idea, so I’m trying to work it out. When I finish the first draft of my next book, I’m going to reward myself and obey my therapist and get a hobby! And it’s got to be a hobby that isn’t anything to do with words, and isn’t a way to make money or be useful – so I’m thinking about playing the ukulele [laughs] or something like ceramics, which I don’t think I’ll be any good at! So that’s my next project: to learn to do something where I’m not just continually trying to run away from my own thoughts. That’s the plan.