It renews itself. And, I mean, at the beginning you’re not getting proper sleep, you’re not eating properly, because you don’t want to, you can’t. It’s sleeping was [sighs] not being able to sleep was just dreadful. Not dreaming when you do sleep, no dreams. Falling asleep listening to the sound in your ears of the trachy machine, his, his respirator, you I could hear it when he was in the first hospital, every time I closed my eyes and tried to sleep I could hear that sound. Because I was listening to it for hours every day, you know. It just changes your whole life, everything changes. Suddenly you have to decide what is to be done with everything. With your home, with your work, and this person that you’re responsible for. And everything is down to you. And shouldering it is what keeps you going in lots of ways, but it also wears you down. I’ve been very fortunate, I’ve been very fortunate with my friends and family and colleagues. Who all supported me in one way or another, even if it’s just the drivers will give me a hug, Come here. And hell give me a hug, a bear hug. And they let me play darts even though my darts go into the wall [laughs].

And, you know, all those things, they’re all like strands in a net that are holding you up. And, if they do keep in touch with you those strands stay intact and keep you held up, you know. Just phoning to say, How are things going? How’s [husband] doing? Is he comfortable? Is he… you know.

A lot of people who are ignorant about this will think, oh, hes going to wake up some day. Oh, hes going to suddenly react or hes suddenly going to do this. You know, and when a friend said to me, Oh, what happened when you went in after three weeks? I said, Nothing. Oh, I was hoping hed have missed you and would have reacted to your voice. I thought, fuck sake, you know, Jeez. And it hurts, you know, it hurts. Because I wasn’t expecting that. And her saying it is like but that’s all counter balanced by all those brilliant people, brilliant people, who have helped. And I’ve made so many friends. I’m not a person who makes lots of friends, you know, I wouldn’t hang around with a group of people I’m quite gregarious but they’d be more acquaintances than anything. But I actually have made friends since this happened. Because I’ve needed them I suppose and I’ve reached out to people.

I spend a lot of time shutting everything out. I’m emotionally exhausted from the stress of dealing with [partner] and helping him. Not deal well, it is dealing with it because theres a lot to deal with as well, and trying to help him. And it’s sad every single day. And then I’ve just added a heap of stress with madam [the puppy]. But in a few weeks shell get more settled and house trained and everything. So that’ll be a bit less stressful.

But that for me that’s how it seems to have manifested itself. And I think everyone that I’ve the sessions that where we just sat outside at [London Specialist Centre] because the gardens are gorgeous, we had a wonderful summer, so every day we just sat outside, and we just chatted. And wed laugh and cry and flip flop about stupid things and serious things. But it was all just oh, what’s the word I’m looking for it just happened as it needed to happen. There was nothing forced about it.

It wasn’t ten o’clock on a Tuesday and you were sitting—

Exactly. And so that was, that was great. And it sort of gave you all that emotional support. And the level of understanding that they have versus anyone that cares for you but isn’t going through it is completely different. Theres real empathy there. So everyone else tries to be helpful and loving and supportive, but it’s not the same, because they’re just not on the organic, that’s the word I was looking for. It’s just not the same.

I made some very good friends. One at [Hospital] initially and some others at [Specialist Centre] and very happily their loved ones have moved to [the care home] as well. So our family is back together. Were in slightly different parts but were there now for each other, even if it means going to have a coffee in their loved ones room rather than having a nice plenary area that we can all move to which [Specialist Centre] had in spades but [the care home] doesn’t really. It needs a carer’s annex really, but it doesn’t have that space sadly.

And do you find you’re able to talk completely openly with the other family members?

Yeah. It’s been the therapy that therapists couldn’t give me. And I think they feel the same. I’ve had some counselling. I had some that work provided early on. And it actually it just pissed me off, I didn’t like being told to sit down at ten o’clock on a Wednesday morning and reveal my feelings, that didn’t work. So I stopped after a few. And then I got some more through the GP that was the process began in February but finally in June, July time the counselling was available. And he was very good actually. But actually what it turned into, or what I found helpful was not to sit and cry because I it’s just not I don’t know why it’s not my way but it’s not. But actually just to sit and talk through the worries and problems that I’ve got, so it was a different sort of counselling. And he was very good. And he taught me something about mindfulness.

So the last time I saw him standing upright was on his way down to surgery. And I don’t know if hes ever heard or seen me since in two and a half years. And it’s changed, it’s changed me because I’m not as forgiving as I would be. Theres not one person in this world I hate, I’m not that kind of person. If I fall out with somebody the way we fall out is, oh, all right then. Will you give me a call? Nah. And that’s it. I don’t like fighting, I don’t like confrontation. I don’t take any shit from people, now that’s a different thing. But it’s changed me now. And I would stand up, I would stand up to people who theres people are thoughtless about what they say. I think we were talking about this before. For instance, now if someone says, Oh, I’m just going to go home and veg out. You know, I really wish you wouldn’t use that word, you know. Or, It’s a no brainer. Or one of the guys I work with has frequently said, Oh, I’m brain dead today, I’m brain dead, you know.

Miggy: I think one of the hardest things in it all is how to deal with other people, because Matthew had his twenty-first birthday while he was at home and people came in, and how on earth do you celebrate a birthday? But you have to pretend something for all those people who’ve been kind enough to give presents or their time. So you, as his main carer, as his mother or father or sister, have to go through this charade, Oh thanks, he’ll love that. Thank you very much. That’s wonderful. Matthew, look what they’ve brought you. And you are actually play-acting, really, and that, unless you like acting, that becomes so wearing. Absolutely drip, drip, drip, wears you down.

Oh somebody I went to school with, we were out on a hen do, I hadn’t seen her for probably ten years and she got drunk or whatever she was, I’m not quite sure, and she locked me in a toilet cubicle in a pub [laughs] and A, started telling me she my shoulder and what are you doing in the ladies’ toilets, hes been dead a few years now [laughs]. What’s he doing in the ladies’ toilets? But basically saying that, you know, we as a family were so cruel and we were so wrong and we should have just let him go and we should have let him die, and she didn’t grasp, I don’t know if it was cause she was too drunk or because she didn’t want cause she had a, you know, preconceived ideas, she didn’t want to believe, for whatever reason, that there was nothing we could do. You know, he the ventilator was turned off, he continued breathing and he continued breathing by himself for, you know, nearly ten years. But she was just, you know, you’re so cruel and as a family, we should have let him go and we shouldn’t have kept him alive and I don’t know how many times “we didn’t keep him alive, do you not understand?” We didn’t keep him alive, he was alive. We didn’t keep him alive, just in the same as you are and I am, were just alive.

They ask horrible questions. And the one that I fear is the one the one now, after I’ve choked it all out, after I’ve explained about the accident and the eight years and [speaks tearfully] going to court and having to write an affidavit that I thought he should die, which is a horrible thing to have to do. And then if I can bring myself to explain what withdrawal of nutrition and hydration is, which is a horrible thing to have to do, all of the time which I’m terrified that the person listening to me is actually thinking like, what a bitch.

And then the question I sort of dread is they’ll say something like, Oh, but people do wake up though, don’t they? Because I read about this guy in Canada and he woke up after twenty years and he was fine. [Laughs] And then it’s kind of like it’s not the person’s fault but they’ve just kind of said to you, Oh, maybe you just murdered your brother for no reason. And then again, I just don’t know what to do. So that’s kind of one of the reasons why talking about it is so difficult and I try to avoid it. But then if you theres that other thing about what you say, isn’t it, because if you one of the good things actually I think about getting older is people ask less about siblings. Whereas at the time because what I found quite so basically like within our village I definitely I mean, I became, you know, the sister of coma boy, and the girl from the [pub] and my parents’ daughter. People would ask me in the street, they’d say, How’s your kid? they’d say. I don’t like to ask your mum and dad. I never quite knew what that meant. Like why is it okay to ask me then, I don’t know. I still don’t really get that [laughs].