In conversation with Greg Wise
What’s your view on the language of death and dying in the media and in real life?
I realised probably very early on that I didn’t know the particular language around death. We’re not taught it by our parents, we’re not taught it at school, and we we don’t learn it within the community.
We’ve lost the ability to speak this particular language because we literally don’t witness death anymore. Not that long ago a household would comprise of grannies, grandpas, uncles, cousins — whoever it might be. Or we lived in a community where these people still resided, and we would witness as much death as we would witness birth. We would also witness the passage to death — it would have been an integral part of all of our lives.
As people left their communities to find work, close family relationships started to drop off and, because we don’t have the time, or the resources, or the space, people end up dying in factories called hospitals, which are not designed for people to die in. They’re designed to get people better and send them back home. Unfortunately now so many people die in hospitals, taking beds from people who need to get well.
We no longer witness death because we’re not there.
I remember very early on feeling tragically embarrassed because I didn’t know the words of condolence. I didn’t know how to write the letter. I didn’t know how to speak to the person who had suffered a death close to them.
The difficulty is that the people who are expressing their sense of loss don’t know the words either.
And, of course, we have to be led by them. We can’t rush it and say “You haven’t lost them, they’re not lost — they died”. We must take the lead of the people in the centre.
It can though be as simple as just being able to use the words ‘death’ and ‘dead’ — we wrap everything up now euphemistically — like saying people have ‘passed’, or that we’ve ‘lost’ somebody.
It’s not just a semantic argument. As soon as we start either misappropriating words or not using the actual words, then we start getting away from what we’re actually talking about.
Having now spent many months going to book festivals and doing talks with Q&A sessions afterwards I can tell you — people are desperate to talk about death, about grief.
We have to be able to talk about that as much as we talk about things like birth and sexual health and whatever else that kids study in their PSE lessons at school. We have to have death in there as part of what we learn. I don’t think it’s ever too early to start talking about it. We need to get death on the agenda in schools.
I think that we have to be able to talk about death in the same way that we talk about birth. We have to be able to share on social media, maybe not pictures of old uncle Herbert dead in his coffin, but not far off.
After all, we haven’t lost them in a bloody shopping centre or something … literally, they have died.
I really believe that we have this totally skewed view — we feel that by not discussing death it is an act of love. But it’s not, it’s actually an act of cruelty. We don’t use euphemisms for birthing, that’s what’s so fascinating.
We don’t say “she passed a baby”. You pass a stool, for crying out loud!
Did you have conversations with Clare about these things as she was dying?
As I said earlier, you have to take your lead from the person at the centre. If the grieving person is upset you can’t rush into conversations about the language they use, and it’s the same with a person that’s going through the illness.
It’s one of those things that kept returning to me during Clare’s illness because in my skewed way of thinking at the time, she wasn’t doing it right. She was in denial literally to her last breath. I read a lot of books, so I understood the importance of being able to talk and having a plan. You need to make sure you can manage your pain, but also have times when you can be present, and you need to plan for your own death.
Clare did not want to talk about anything. And she didn’t sort anything out. Not even her Will, not until she was catastrophically ill. Clare was focused on her treatment. Even when she was unable to go to the bathroom by herself, she felt it was because she hadn’t done enough physiotherapy. But it was the bone cancer. She was literally unable to stand. Even when the doctor told her it was because of the cancer and not the lack of physiotherapy she said “Thank you … I’d like a second opinion”.
Nobody changes when they die. They continue to live just how they’ve always lived, because dying is still continuing with your life until the very last minutes. If you’ve lived your life in a certain way, you will carry on as you always have done. My sister generally lived her life in denial. It was magical thinking of mine that she might change because she was dying.
Not That Kind of Love is a book of all of the blog posts that we wrote together during Clare’s illness. I wrote the last post the night before she died (although I didn’t know that at the time) — I was really really grumpy with her because she wasn’t doing it properly. She was so in denial about everything and I was honestly so frustrated with her.
It was very important when I met with publishers to say “you cannot edit this, it has to be published as it was written in real time”. As soon as we start editing the whole thing falls apart because then it becomes about ego or whatever else. The grumpiest I ever was in writing about my sister was the last post I wrote before she died.
She never had a proper relationship with her body when she was alive. Her body was absolutely destroyed by the bone cancer and she was still alive because she lived in her head. So, of course, the progression through to death was exactly as she lived her life and it was my continual realisation that it was her gig, and she has to do it, and I couldn’t tell her how to do it.
The only moment that we ever had any conflict was when she was told that she could actually have some more chemotherapy when she was already spectacularly ill. It wasn’t going to do anything in the long run and I said, straight up:
First time you had chemo you were well and it made you completely sick as a pig. Now you’re really ill and you still want to have some more?!
And she got angry, saying: “This has got nothing to do with you. It’s my decision”. And I had to say: “I can’t face seeing you make yourself that ill on top of how ill you are already”.
The more research I did the more I realised that almost every medical professional doesn’t finish chemotherapy. They know when to stop. But doctors will pressure you to keep going because they can’t have these conversations either. This is the fascinating thing about it, they are unable to have that conversation. Again, they’re still not really taught properly. If nothing else, it would save extraordinary amounts of money not giving people needless chemotherapy. If we could all just learn how to have the conversations.
Everyone talked as openly as compassionately, and as pragmatically as possible. But she didn’t hear it.
I tried to get to every meeting for the years before she got to the end game, to sit there with a notepad to write everything down. Because the patient themselves don’t hear anything.
My sister once said:
When we’re talking about breast cancer and procedures, and everything else, all I can think about is ‘Oh, that’s nice dress. I wonder where she got it from’ …
You go into shock, which is why everyone should try and go with someone else. I would type all this stuff up and send it to her in an email so that she had a record of it. If you can, take someone who can be as dispassionate as possible in the room to write down exactly what they hear. And if you don’t hear it properly, stop. Ask them to spell it out, and ask questions.
How do you think we could go about de-medicalising death?
It depends what you’re dying of.
A hospice isn’t a nursing home, it’s a hospice, but you don’t know how long it’s going to take for somebody to die. It can be months, which is a long time There will be times where people of course will need some medical treatment, but by the time you get to the end game, you are beyond medicalisation. What you need is compassion. Compassion for the person, and compassion for the family.
If you can’t be in a hospice then you’d be in a hospital, which is pointless. We need to take the act of dying out of places that are for curing the living. I don’t know how we do this.
This is all part of the dismantling of our social care system. I think dying should fall more under social care than under the NHS itself.
Alongside all of that there’s these death doulas, they’re all starting to come up — it’s becoming more prevalent. Again, it’s just pragmatic.
We have midwives for birthing, we need midwives for dying.
The process of dying has stages to it as does the process of birth — all of these things have very clear signs — different, easily recognisable parts. Death can be much the same.
How has the experience of caring for Clare changed your views on life, death, health disease … all of the above?
I’ve read so much stuff in the last couple of years and I’m really interested in post traumatic growth. PTSD accounts for about 30% of all trauma sufferers. The other 70% experience growth.
It’s almost as simple as this: if you suffer trauma you grow more than the person next to you. If you suffer two traumas, you grow twice as much. And so on.
I can, of course, only talk for myself here, but having been able to be with my sister in an extraordinarily traumatic time was one of the most incredible privileges of my life. Without a doubt. The things that I found out and the things I was able to do — things that possibly I thought maybe I wouldn’t be able to do.
And I think it’s more that just ‘what doesn’t kill us makes us stronger’. There is a sense of awe when you are with someone as they leave their life. I’ve done that with two of the three closest family members. I was with my dad in his last moments as well, but he waited until I left before he died. I was with my mum when she died. And I was with my sister when she died.
These are extraordinary moments.
The death of a loved one is so often tinged with shame and guilt because you weren’t able to be there, because you were in another city, doing your job, looking after your family, whatever the reason. But, for me, I had a clean, pure, crisp experience of grief. It’s not painted with shame or guilt. I couldn’t have done any more because I was there — I was allowed by my sister to be that person — I was the only person really present for the last 10 weeks. And she allowed me to be able to be there, when she took a shower, and take her to the toilet.
She allowed me to do that and it was a privilege.
Does it mean that I actively live my life differently? I don’t think so. Because I think that a lot of the things that this type of death brings up I’d already sorted out. But I think I have very much changed in terms of hopefully being kinder and more compassionate.
And now I know I can help someone die.
It’s one of the things that forms the shape of who I am now today, very much so — we carry around all the experiences of our lives, shaped by the triumphs and the tragedies, and we’re shaped as much by the loss as the gain.
Whatever shape I now have in the world, it’s very much influenced by that time with my sister and the fact that she’s no longer here.