And I, I remember the first thing I thought was, ‘What am I going to tell his mum?’ Because everybody had been waiting for us to tell them, you know, that, whether he’d got motor neurone or… Of course people don’t live, our, our family don’t live close to us. They live down south. And, you know, of course it’s, everybody wasn’t waiting for us to come back – they were waiting for a phone call. And then I felt, you feel guilty that you’ve got to make a phone call to his mother, to say that her son’s got MND, do you know what I mean? So there was all that emotional stuff going on. And that’s how I felt. But I do remember when Mike, when his neurologist told him, Mike just went, ‘Hey. [shrugs] And his neurologist said, ‘Well, you’re taking it very calmly. And he said, ‘Nothing I can do. So we came away from there, didn’t we? And we actually went to the Botanical Gardens in [city] and just went for a coffee, didn’t we? To try and take stock, really, you know, of – because we were thinking, ‘How do we tell everybody now?’ Because everybody was waiting for us to ring them, you know, all our friends and family, everybody was waiting.

And the first thing he wanted to do – and it was his decision, obviously, how he wanted to start that process – we went back, he went back to fire service headquarters, to tell his colleagues. [Mike writing on whiteboard]. There were only two people at that time who were privy to the knowledge that he was having some tests. Yeah, I’ll mention that in a minute. There was only two people, other people in the brigade who knew that he was having some tests. Everybody knew that he, there was something wrong, but we decided not to tell everybody what was wrong, because it could have been something that was just treatable, you know. That’s, we decided not to set the hare running, if you like, you know, to tell people. What Mike’s just written there is that at that time anyhow he could still speak, he was speaking. And he was, he was quite clear, you know, with the, with the speech. So you went and told the two at headquarters, didn’t you? So then, and then it was a case of ringing his mum, ringing his two boys, ringing my son, ringing the family, and whatever. We rang them initially, and then that weekend we went down, didn’t we, to see them as well. Because we were aware that, you know, the phone call, all sorts of stuff goes on in people’s minds, doesn’t it, if they’ve not seen. So we then dashed across to [city], didn’t we, to see Mike’s eldest son. And then we went down to [city] to see his youngest son. And then went to see his mum and family and just really met with them that weekend. And that was it really. There was nothing else we could do, you know. It was the diagnosis was made, and that was it.

How did they all take the news?

Everybody was very, very upset, really upset, because everybody was aware of what motor neurone was. We didn’t realise that people knew what motor neurone was. And we, we found, Mike’s sister for example, she, she knew somebody whod had it as well. So she was aware of that. So everybody was really, really shocked and very upset about it.

Who actually made the phone call? Was that you, Mike, or did you?

I made the phone call. Yeah, I made the phone calls.

It sounds like you were kind of so busy thinking about telling other people that you, you weren’t quite taking stock of what it meant for yourselves. Is that right?

Absolutely, I think that’s what we did. We, you know, I think your natural instinct is to, to care for your children and, and make sure that, you know, they’re communicated with properly and, you know, supported. And, and our firstreaction was for the boys, really, you know, that we need to make sure that they’re with it, you know, they, they under-, understand. We were, to be honest we didn’t understand what was going on, because we didn’t know what motor neurone was, really. So we were in a position where it was just a massive shock factor, and trying to support people when you don’t really know yourself what’s going on. So we just talked to them and, and just said, you know, that, As we find things out, we’ll discuss it with you. You know, and we, we asked them how much they wanted to know. Did they want to be fully informed of everything? And both the boys, all the boys said, Yes, didn’t they? The three of them said yes, they wanted to know everything. They didn’t want us to feel that we needed to protect them in any way. They wanted full involvement. And that’s what’s happened, you know. Anything that happens, they get told, you know. And they’re, whilst it’s upsetting, they, they want to know that. So that’s what we do.

MichaelIt was then very devastating to tell other people, family and friends. ‘If it’s hard – I don’t know, if it was hard to tell my parents, ‘the real, [wiping his eyes] the real tough one really was, ‘What do we tell the children?’ ‘No matter what age they are, they’re still your babies. ‘That’s been one of the hardest things to cope with. ‘How much do you tell them? What do you not tell them? [tearful, wiping eyes] Rightly or wrongly, my choice was that I didn’t want to be responsible for stealing their childhood. ‘They have their doubts. They’re not [sighs], not 100 per cent gullible [laughs]. But we still fire off stories that Santa Claus is real and the tooth fairy exists and, despite the best efforts of their classmates to say otherwise, you know, we just, we want them to retain their childhood. ‘So I can’t tell them the truth. [tearful]. Oh dear. My little boy, he’s just like me, he’s a lunatic. He’s, [laughs] he’s as mad as a, a brush, isn’t he? [wiping eyes] And there are many times, you know, I could have almost blurted it out, ‘I haven’t got time to fight you. ‘I can’t tell them. Where would you find the words?

MichaelIt has affected the children in a number of ways. There could be better, more easily available support, I think, for the children. It’s difficult for us because we don’t particularly want to give them information they’ll not be, may not be ready for. We’ve had the discussion and it’s – well, we’ll give them information as they ask. Some people say, you know, you should perhaps tell them. They may be angry at a later date if you haven’t. I think I’d rather live with having allowed them their childhood for a bit longer. I already think kids grow up too fast these days as it is, you know. And I, I look at the childhood that I had and the childhood that they have and it’s so different. It was all so much more innocent. And things have changed anyway. Do I want them to have to grow up much quicker? Which they’ll have to with the bereavement. Well, they can do that when it happens. ‘I don’t particularly want them worrying every day at school, ‘Will Daddy be alive when I get home?’ [wiping eyes].

Has anybody offered you any advice on how to talk to the children?

Michael[looks to wife, who whispers] Yeah, there is a booklet from MND, which we’ve looked at. We try to be as open – how does that sound? One minute I say we don’t want to tell them anything, the next I’m saying we’re trying to be as open as we can. I try not to be as contradictory as I am [laughs].

Sam’We don’t lie to them.

MichaelWe don’t lie to them, no [phone ringing]. But we have been sensible about what we say.

I wanted to ask you about telling your children, how you told them?

Yeah I didn’t at first because I didn’t know how to tell them and I wanted to protect them and my worry was my son because he’s 12 years old and I thought if I told him the first thing he would do is type it on the Internet. And if you type in the name, motor neurone disease, in on the Internet you get all these horrific things come up. And I just didn’t think he could cope with that. But in the end I had the local news, the radio channels asking me about my MND because for a, for a joke and to raise money I’d actually sold it on E-Bay [laugh]. So, to raise awareness of the disease.

So then obviously I had to tell my children. So I explained I had this disease called motor neurone disease and that I would never get any better and that I would slowly get worse and I wouldn’t be able to walk anymore. And my son asked me, ‘Would I die?’ And I just said to him, ‘Well we’re all going to die someday. I’m going to die but we’re all going to die someday. And I don’t know when just like you don’t know when you’re going to die. And he sorted of accepted that, but he is very worried about me, very concerned, gets very upset still. But saying that he still is his normal self. I haven’t noticed a big change in his personality which I was worried about.

My daughter seems to cope with it quite well. I think the hardest thing is that they’ve, from being my, their mother and their parent and being their carer and running around after them. It’s turned and they’re my carers now. And my son makes me food and he makes me hot drinks and my daughter helps me to the toilet and she has to do my clothing for me to go to the toilet and at 10 years of age it’s quite heartbreaking to see. And it must be very hard on them as well because they had an active mum that used to go body boarding with them and in, in the holidays go down the water parks.

They find it quite hard because went on holiday this year abroad and it’s the first time since I was disabled. And we went to a water park and I was in my wheelchair and my son said, ‘I just really, really wished you could come with us on the slides. So it’s hard for all of us and my husband as well.

Do you think there is anything that has helped them in the last year, the last few months, that’s helped the children?

Just being my normal self with them really. They still don’t get away with too much [laugh]. I’m still a strict parent but I mean I think because I’m honest with them and if they ask me a question I will give them an honest and truthful answer and I think that they know that. And they asked me a few questions and when they realise that I would be honest with them I think they’re quite selective in what they ask me now. And my son’s stopped asking questions now.

It’s almost becoming a part of their lifestyle now that I’m like this. I think the biggest help for my children is I’ve got a close network of family living in the area and we’re, and they support us immensely. And they’ve got so many uncles and aunts and my parents and they’ve got cousins and I think that’s been the biggest support. Is that life goes on only it hasn’t changed their lifestyle too much or hopefully it hasn’t anyway apart from having to care for their mum.

Most people were shocked. Well, everybody was shocked. A lot of people were as ignorant as I was, so you had to kind of explain at the same time as tell people. I got loads of kind of lovely letters and cards from people. That was lovely. A couple of couples that we’ve been friendly with, we had quite a long discussion about spirituality and things that we would never have touched on unless, you know, this diagnosis has happened. Both my children responded well, as did my two stepchildren, and have continued to be kind of loving and practical, which is what I need really.

I have a very close friend, who is younger than me by about ten years, and I’ve helped her a lot through a difficult time with her marriage. And she couldn’t cope with it, because I was now the one that needed the care, and yet I’d been the helper. And that’s been hard for her, and hard for me really. But we’ve kind of sorted it through now and we’re back on an even keel. My mother couldn’t cope with it at all. She was angry. She had all the anger that hasn’t hit me. So she was cross with me, she was cross with MND, she was cross with the Association because they hadn’t got a cure. And that was quite difficult and we had to have quite a few words with, I ended up saying, ‘Look, you’ve got to accept, mum, it’s the quality of life now that matters to me, not the quantity. And I guess the hardest thing for her was the fact that her daughter was going to die before her. But then, bless her, last year she got kidney cancer, was ill for about two months and died. So it worked out the right way round in the end. But she was so angry.

Other people. My husband is a brick. He’s far better at coping with me being ill than I would be at him being ill. And I think like me he’s not been angry, but obviously we have bad moments and we have weepy moments. And they tend to be first thing in the morning before we’ve got ourselves sorted. But then we find something silly to laugh about and get on with the rest of the day. Kids help, I think they worry, but they try, they kind of come and, my daughter lives in London, so I don’t see as much of her as I’d like to. But we’re on the phone most days and she’s always practical, you know. My son lives in [a nearby town], in the town. And he comes out and is quite a strength really, and will do helpful things about the house for us as well. So, yes, it’s been a really good reaction from most people. I have one funny one. I bumped into an ex-neighbour in the local supermarket about three or four months after being diagnosed. And ‘Oh, hello, how are you, how are you, how are you?’ And I said, ‘Oh, I’m not so bad, but sadly I’ve been diagnosed with motor neurone disease. ‘Oh, dear. Apart from that, are you well?’ And so obviously she had absolutely no idea what MND was. But that was quite a funny one. But most people know it’s something horrid but are not quite sure what it is.

How did it go? Well, it’s really difficult because people, people are just shocked really. That’s the first thing. They don’t really believe it to be honest. And they sort of, sometimes they sort of like say, ‘Oh, well don’t worry. It can’t be right’, and, ‘It’s not true’, and, ‘You know, you look all right to me’, this kind of thing, because they don’t really want to believe it. So there’s that aspect of it.

And then of course they often don’t know very much about it, so you’ve got to actually tell them all about it. And then they sort of and sometimes they don’t hear that. Sometimes you find you’re talking to them again later and they haven’t took that bit in. It’s like they haven’t quite clicked that you’ve told them that you’re going to be dead soon. You know, you’ve got a few years but you’ve not got a long time. Or that it won’t be that long before you’re not able to walk at all. They, they sort of, they hear it but they don’t really change the way they’re thinking about you.

So sometimes you’ve got to like tell them more than once, you know, so it becomes really clear to them. And then obviously as the illness has developed then that’s got rid of that. But at first it took quite a lot of effort to actually to get people to see it really.

And that’s, that’s difficult for me then, it’s upsetting. Because it’s sometimes it’s only when you have got through to somebody and they’re, and they’re feeling sad for you and then, then it really hits you how sad you feel for yourself as well. But normally I sort of keep that to one side. But it’s when it’s in somebody else then, then, which in a way is a good thing because it’s a sharing thing. You know, you’re sharing your feelings. But it is hard work. But it, you’ve just got to do it really. So, you’ve got to. Because you can’t really move forward until, you know, if there are people that you haven’t, that are important to you and you haven’t told them, you know, you can’t leave it like that, you’ve got to And then if you did leave it like that I think they would feel very upset. And you’re also cutting yourself off from support and so on. So it’s something you need to do but it’s not a very pleasant thing to do. Yeah.

That is one of the hurdles that people in this situation will have. It’s difficult telling people after the first diagnosis, and, then it’s difficult seeing people after the death. And again we chose to hit it head on, and by telling people by email in the initial, after the initial diagnosis we, we immediately communicated with a lot of people in a broadcast sense rather than in a one-to-one basis. And on a one-to-one basis whenever you met somebody for the first time and you were telling them whatever the news was, you know, originally diagnosis, subsequently progress or lack of it, and then finally details of the death, it was very difficult, extremely difficult. But having told that person once, it then became much easier with that person, or that family.

But we got very strong emotional support from a widening group of, of friends and there was a core group, there must have been, I don’t know, probably thirty or forty who I kept in touch with all the way through telling them how it was going, because what we didn’t want was to be constantly on the telephone answering people’s questions about how Olivia was doing. And the easiest way around that was to actually strike up an email group and I would provide people with information, and they’d come back with ideas and if we were going for consultations, I’d let people know that we were going to [hospital] and that we were looking for, you know, good vibrations coming through and it was a wonderful support for us.

But again if you don’t have that peer group which can give you that support it must be terribly difficult to actually emotionally – and I could see because of the tiredness how marriages must be put under huge strain, but because we decided we’d take charge, rather than having, well in the, in the absence of somebody else taking charge essentially that we’d take charge of the situation, we were able to do that. Because we were so involved with everything day-to-day and that we were taking responsibility for it, we could then communicate directly with this group of friends who were able to give us moral support and emotional support. And it was one of the advantages of the modern technology I guess.

Did it enable you to feel in control in any way, because it is so a, it’s such an out of control situation?

Yes it did. Although there were always these caveats that nobody was really in control of it, it was the disease that was in control of it and we didn’t know which direction that was going. So, it gave us something to fall back on, it gave us, I mean it, it was the true meaning of friendships really, and my wife and I have a very close marriage anyway and we were, we were much stronger between us.

But I felt very vulnerable that once they knew I wasn’t going to get better – because obviously there’s a short-term scenario where, ‘Yes, you, you know, we’re going to look after you for a couple of months. You go and have an operation, you come back, and [snaps fingers] off we go again. And of course that wasn’t going to happen. I was never ever going to come back again from an operation, because there would be no operation. I would just get progressively worse. So it was very, very worrying. And it got to the point where obviously I needed to tell somebody, and I spoke to my immediate boss about the situation, and he was extremely understanding. And we went, and he arranged a meeting for us to see Personnel, and the company was absolutely brilliant in my case. I mean, it might not happen for everybody. But certainly because I’d got other skills I could call upon from previous careers, I was able to become deskbound, if you like, take over a computer and start running another bit of the company and, and doing things there.

So this was the point at which you told them that it was motor neurone?

It was the point at which I told them. And again, it was fairly traumatic when you’re telling them, because these are people you’ve worked with, know you, and there are a lot of friends, in real terms. And it’s very emotional again, that the things that you’ve done and are going to do have that impact on that situation. And again, you’re becoming vulnerable, you know, because you’re having to open up to people and tell them things, and you feel very vulnerable when you’re doing it. And of course once you’ve told the company, you’ve got to tell your colleagues. And they take it differently.

And again there were sort of three sorts of reaction. Unclean, ‘I don’t want to catch it, so [coughs] I’m going to stay away from him. Over-reaction in terms of sympathy. And then fortunately for me I worked with a lot of heavy goods vehicle drivers, who have a tremendous sense of humour. And it was just business as usual. And that did me the world of good, because they kept me straight, they kept me narrow. And that’s what you want. It’s business as usual. You don’t want people to make exceptions for you, particularly – I didn’t.