Liz - Interview 22  

Liz - Interview 22

Age at Interview: 45
Sex: Female
Age at Diagnosis: 37
Background: Liz is a former classroom support worker for special needs, divorced, with 2 children aged 18 and 17. Ethnic background/nationality: White British.

Brief outline:Liz was diagnosed with rare inherited (familial) form of MND 8 years ago (1998). Sixth member of her family to be diagnosed. Has weakness in her arms and legs, and some speech difficulties. Has a PEG but does not use it yet.

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She made a joke about dying and her friend was so upset she didn't contact her for three weeks.

 



Have any of your friends found it difficult to cope and so on?

Yes. A lot. And all in different ways. I mean, I've got a friend that comes and does the PEG. She is so humorous and she just takes the mickey full stop. But I also know that if I have a bad day or she has a bad day trying to do the PEG, she has gone home and broke down. But I don't see it. Other, my other friend was fine until over a year ago Cliff Richard tickets went on sale. And the concert was last week. So of course I rang up and said, “Oh, I've got my tickets for Cliff.” “When are you going?” “Next November.” Well, this was October last year. I said, “It's all right. If he dies, I'll get my money back. He's older than me. So I mean, I'm not going to die because I'll, I can't afford enough to lose this money.” And I hadn't realised that I hadn't heard from her for about three weeks. And I kept ringing up and she wasn't in. And I knew that, because we'd been friends for thirty years, that she wouldn't not answer my calls. And when I eventually got hold of her, she'd actually broke down. It had never occurred to her until I bought those tickets so long in advance that I might not be here. And she said it wasn't me, it was her problem. Up until then point, that point the thought that I might not be here hadn't actually entered her head. And she needed that time out, to get her head round that, and come back and say, “Look, I'm sorry, but I couldn't...” So I said, “Well, the annoying thing is I'm sat here wondering what I've done to you, not realising that something as, a joke like that had had that knock-on effect.” And yet normally she's the one that picks me up.

Do you think it was worse because it was a joke? Did that...?

I think so.

Yeah.

And I think it had obviously never occurred to her before. And I often sometimes just don't think, but it was just a genuine thing, “Well, Cliff's 67. If he drops dead tomorrow I'll get my money back.” And kind of it's just something, “Well, actually Liz might not be here, never mind Cliff.”

Jonathan Miller - Motor Neurone
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