I know nobody'll like this - but I'm all for popping off to Switzerland, I'm afraid, if.
Tell me more.
Well, as far as I'm concerned, if I get to the point where my quality of life is poor and I haven't got the independence, I don't think that your family has a right to tell you what to do or what not to do. You are your own person. And, all right, you might deprive them of their mother or their wife or whatever, but you, you can't live an existence that is so poor just for other people's benefit. And if it got to the point where I had a really poor quality of life because of the progression of the disease, I'm afraid that's where I'm going.
Have you talked to family or made any arrangement?
Yeah, I've told them, in no uncertain terms. And they just don't want to talk about it. And obviously for the time being we won't. But if in the years to come that's what happens- I felt that the depiction of the motor neurone disease woman by that Gillian what's-her-name on Holby City was a complete load of rubbish, frankly [laughs]. And in fact my husband was away when she popped off to Switzerland, and he rang me up and said, “Are you all right?” And I said, “Why?” And he said, “Because that's been on.” And I said, “Oh, I didn't even watch the end of it,” I said. “It was really boring.” Because it just wasn't a true motor neurone disease sufferer to me. It is very good that they want to put it in the news and try and tell people more about it, but I felt it didn't, it didn't enlighten people properly. Because one minute she was on a ventilator and the next minute she was ringing people up on a telephone and, you know, walking with one walking stick. Well, excuse me, but if you've got full-blown ALS and you haven't got, and you're on a ventilator, you certainly won't be walking about with a walking stick. So the whole thing was all a bit of a joke. Because one minute she couldn't talk and the next minute she spoke normally and said, “Oh, hello, I'm popping off to Switzerland now. Do you want to come with me?” So it was all very bad. In fact the best example was on ER. And in fact I found that by mistake. I was sort of flicking through the television channels and suddenly there was this guy in the final throes of motor neurone disease. And that was, I'm actually a bit disappointed I didn't see the whole thing, because you could have seen what it was like, somebody dying. He obviously didn't get killed, he just died. But…
Have you got as far as writing anything down about it, or is that something for the future?
What? What I'm going to do?
Yeah.
No, I haven't actually. I started writing a book about my disease but I've only written one page. Because I write a lot of poetry, so I thought I might write a book instead. But, no, I suppose I ought to do that, have a sort of a living will, so to speak, and say, “That's what I want.” But, yeah - [brief microphone interference] and in fact my daughter, my youngest daughter, the other day she said, we were talking about cremation and I said something about being cremated and she said, “Oh, yeah, Mum, but I'll make, have you made into a diamond.” She said, “So you needn't worry about where you're going to be scattered.” I said, “Oh, that's all right then. Thanks.” So we just joke about it, really. Because you've, you've got to, haven't you? Because if you know something, it, it's really odd because everyone knows they're going to die at some point. You don't know whether you're going to be run over by a bus tomorrow or, or what could happen. So me saying I've been given a, an illness that says I'm going to die, well, of course everyone's going to die. So the fact that I don't know when I'm going to die, I suppose it's all a bit silly worrying about it. But what worries me about it is the way I'm going to die. And I don't want to die drowning because I can't breathe, or just sitting there having someone shovelling food down my throat. You know, I just don't want that. And the indignity of it is just too much to bear. I'm, I've lost dignity as it is because of things having to be done for me and having to sit in a wheelchair, even though I wheel myself. I just don't want the indignity of dying like that. So I'd rather just say, “Right, thanks very much. I've had a good innings and I'm off now.” And that's it.
Footnote: Media stories about MND are not always realistic. Given the variable way MND affects each person, it is theoretically possible for someone to be on a ventilator but still able to walk with a stick, but it is more likely that the person would have very limited mobility at this stage. It is unlikely someone would stop using a ventilator once they had started using one. Drowning or choking is feared by some people, but with good symptom control and palliative care it is extremely rare and very unlikely to be a cause of death. |
