Family Experiences of Vegetative and Minimally Conscious States

Emma: I think I was told she was in a coma at that early stage, and I think that’s what – you know, you have no idea of what that actually means at all. Except having seen something on the TV and you have this sort of mental image of this person, sort of lying peacefully hooked up to equipment.
 
Gunars: When someone is in a persistent vegetative state people think that they are peacefully at rest. …As time goes on, tragically, body shape changes, spasticity becomes common, twisted joints, the use of Botox to stop people chewing their lips is used. Steroids are used which then make the body change dramatically, and the whole process of going for a visit becomes an ordeal.
 
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Olivia: I think people’s perceptions, they’re kind of like a channel Five movie where someone lies completely still, looks wonderful, and then ten years later they – ping, sit up straight in bed and—
David: Like, I say, we, we always use ‘the vegetative state’, not ‘coma’ or, you know, she’s going to wake and be – you know, in five years, it just – you know. Not that it didn’t cross our mind, but, you know, it’s just a – I suppose it’s a media thing that’s put into your head, isn't it, you know.
Olivia: People don’t think feeding tube, tracheotomy, nebulizer, twisted limbs, wasted muscles.
David: No, you don’t, you don’t see that on the telly, do you?
Olivia: No.
David: So it’s – once you’ve lived it you know, you know what it’s all about. Yeah.
 
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Emma: you know, this person who resembled your family, your mother. And to all intents and purposes absolutely there, but not. And it… you know, the shock was that this isn’t romantic and that person is going to, “Hello,” you know, the eyes are going to flutter and that person is suddenly going to hold your hand and wake. And that, that, that’s gone ... ‘ER’ [TV programme] is not the reality. It’s - it’s shocking I think. I think it’s quite shocking.
 
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Angela: the main one that I saw which drove me insane was Stephen Seagal in ‘Hard to Kill’ I think it was called. He had been in a seven year coma – mind you, he looked in great shape, he had a brilliant tan, his muscles were all lovely and defined, as much as they ever are. And then he wakes up from the coma and starts beating people up… Within two days of waking up he was pushing himself around with a walking stick thing and evading getting killed by somebody. And it just beggars belief, especially when you know… So since then, I can't really watch – I wouldn’t really watch anything. I watched that accidentally, just – and then when I started to see what was going on I got – I only watched the bit where he got out of the hospital and I turned it off.
 
Helen: When Christopher was moved from intensive care to high dependency, I made an appointment to talk to his consultant and find out what he thought the long term prognosis was, because like everybody I was absolutely convinced that there was hope and there might just be a miracle in his case if sufficient love, sufficient determination, sufficient faith, were thrown at it. But that was my first inkling, when he said, “Given the extent of his brain injury, I would be astonished if he ever spoke or could even support his own spine again.” So that was what we were given.
 
Rifat: The most important thing is that we kind of got to realise that even if he gained some sort of consciousness that’s not going to be anything like, you know, how he was before. It probably would be he would be on the bed looking at us, and one of the doctors, our family friend, he said that patients like them, if he can open his eyes and understand something, point to someone, that you’ll think as miracle. But our general understanding of miracle was that he will be sitting up second day as it happens in movies and third day he will be walking, fourth day he will be fine.

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Cathy: I started to think a lot about the way coma and vegetative state are reported, which again, does you no favours. So people were always coming in the pub, bringing newspaper clippings of somebody that had just woken up in Canada after so many years. And we’d think, “oh”, you know, because we’d sort of think it was true. Whereas obviously I know now actually that’s probably just not even true, it’s probably really they probably weren’t in PVS, they might have been in some different… you know, there’s all sorts of things about it. And I should have known it wasn’t true. Because really early on – it happened to us very, very early on, because about a week after Matthew’s accident, it was GCSE results day and he got the best results in his school. So as a result of that he became ‘coma boy’ in all the papers. …And that was my first experience I suppose of reading about us as strangers, thinking, yeah, you know, the ‘bedside vigil that was happening for ‘coma boy.’ But one of the newspapers said that when his mother read him his exam results he opened his eyes and smiled. Which is just like so not true. He was starting by that time, his eyes were opening, like a millimeter a day, that’s the pro – but again, you read that, don't you, his eyes opened and he smiled. So you think – you’re reading that paper and what goes into your head is, you can be in that situation, somebody can deliver you some quite good news and that will be enough to, you know…
 
Enough to?
 
Cathy: The spark of life will reignite!  
 
Morag: And then hope comes back then, that the main thing, is that hope comes back because it’s like well, “he’s fighting, he is alive and he’s breathing by himself,” so it’s that hope that he might just open his eyes, because we’ve all watched the soap operas and of course they just open their eyes and go, “oh where am I?” 
 
How long was he in a coma for?
 
Phil: Not long, I don’t think. It’s all a little bit of a blur. …a couple of weeks maybe. Not very long. But then it became a – he was then so ill that then – they were then using medication to keep him under. A bit like they’ve been doing with Schumacher. It’s very interesting listening to all of that. And everyone saying, “Is he awake now? Is he awake now? Is he fine?” Well, no. He’s seriously ill and it’s going to take ages. But you don’t know that at the time.
 
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Fern: Nobody wants to hear the horror story. We will actively… I spent hours on the internet searching out someone that had the story that they made it. That they made it through this brain injury stuff. No one, despite the hundreds of stories, actually no, there’s no coming home. They don’t want to hear it and who can blame them, because the alternative is, it’s too despairing, it’s too sufferable.
 
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Helen: And I don’t think Hollywood helps us really. I mean, the number of times we’ve all seen a movie of, of somebody opening their eyes and smiling after they’ve been unconscious for so many months, and it doesn’t happen that way. There are definite steps towards recovering consciousness. And there is no guarantee that having taken the first step the second or the third will follow. 
 
One last thing, do you have any message for journalists, or movie writers or—?
 
Fern: I think you need to go out there, journalists and movie writers and actually see the people. Go and see them in their hospital beds because they haven’t got – you know, it’s not bright lovely white sheets looking like angels in a bed without – they’ve got ventilators in their throats, they’ve oily greasy skin where you can’t give them a bath. 
 
Angela: when you do know the reality then you’d like it respected to some degree and not sensationalised.
 
Fern: Yeah, it is not as simple as waking up. And people, even if they utter words, they usually don’t make any sense. They usually don’t make sense and if somebody said a word as they’re coming out of their coma, it usually doesn’t make any sense. It’s not usually, “Hey, what happened?” [American accent], it’s usually, “What the hell,” you know it’s frightening, it’s terrifying.
 
There is no “waking up” out of a coma. And it is really hurtful to the families that go through this process when you do not acknowledge how scary it is to go through that initial process. It takes weeks, and sometimes they never do wake up. So they may come out of a coma but they’re not awake, they’re just not on the drugs.
 
Angela: If they are going to do it, at least do it properly and do their research properly. Because obviously it can take millions of forms and can affect people in different ways, so I suppose they have to have some artistic license if they’re going to portray it. But, if they’re going to portray something that serious – because it is desperately serious, coma is a catastrophe.
 
Fern: There needs to be more research. Oy, you call yourselves journalists and movie writers, you know, where’s your research? You’re making rubbish films and rubbish articles because you are uninformed [laughter].
 
That’s you told them! Thank you.