I have loved Christopher for as long as I can remember. I used to tell him all the time, but have stopped in recent years. Not because he’s never said it back, but because the more I think about it, the more it’s lost meaning, in the sea of undescribed and wordless memories that I can only assume, and hope desperately, that we share. I’ve learnt to love, or at least to love him, without language, and without the security of knowing that he feels the same way.
There are so many ways I could speak about Chris and the term ‘locked-in’ certainly feels the least fair to him, though perhaps the quickest way to describe our situation. I worry that were I to describe him to you, I would start by telling you the things he isn’t able to do – to speak, to walk, to feed himself unaided. I would never dream of telling you about another person you hadn’t met by starting with the limits of his or her abilities. I suppose with Chris however, when it comes to finally telling you about him, I want to make it as painless as possible for both of us – aiding you to build up a mental picture of him speedily, so that we don’t have to hang around the more medicalised terms for his condition. And so, I’ll begin to describe him to you in a list of have-nots, which is more crass than I’d like, shackled as I am to inane metrics that simply don’t apply to my brother.
For me, my identity is so expressly bound up and delivered in words and language. I place such a high value on text, on prose, on poetry. Like many teenage girls, I grew to assume that the exchanging of “I love yous” lay at the core of truly profound relationships, romantic or otherwise. I learnt too, that my words (on a good day even, my wit!) were a good way to make friends, escape loneliness and to make a living. Using words was how I wanted to experience life – through a lens of language in which my experience is already shaped by my vocabulary. But Chris cannot speak, nor did he study English at school. I remember seeing a photograph of someone holding his hand in a science lesson – helping him to drop a stone into a bowl of water, aged 12 or 13, and being young enough to feel envious that despite being years behind him in my studies, my lessons already felt more taxing. In our spare time, we turn to different sources of comfort – have different ports of call in the hope of staving off boredom. I don’t know that we have different interests per se – it just sometimes feels as if we’ve not been given the tools to find out what it is that we have in common.
I know there are people who have only known him a year or two, who are still able to paint a much more precise, more positive and anecdotal picture of this 32 year old man that I have known all my life. But I am wary of them, and of the way they talk about Christopher or ‘Chris’, an easy over-familiarity that I can’t help but find unnerving. “Chris” sounded like a terrifying unknown to my six year old self, when the young carers looking after him informed me it was to be the cool new nickname that my brother went by, though now I realise that the most authentic of nicknames are never chosen by the nicknominee – though I cannot know for certain what he thinks of having earned it.
The adoption of “Chris” did not phase my parents as it did me. They don’t worry as I do, about the risk of saying something patronising, and can joke with Chris about the possibility of him having a penchant for blondes, say, or other endearing flaws, in a way I’m not able to. It’s not because I think that I know him any better than they do, but because I would hate to have a character imposed on me from the outside, without my express verbal permission. But then, sometimes it feels like he’s in on the joke, and whether he’s laughing at it, or just joining in the laughter, it seems stupid of me to police a family who are just trying to get on meaningfully, in any way they can.
They see him a lot more than me. I’ve moved away, and had an awkward spell as a teenager, when I resisted visiting. There’s a tiny, and I’m sure guilt-ridden part of me that can’t know that he identifies me as the same little girl that wrapped her arms around him on the back step, when he was able to sit up so much straighter. I suppose I worry that he forgot about me, when I seemingly chose to forget him. Nestled there too, amongst the hangover from that bad feeling, is the tiniest ludicrous hope that the unthinkable might happen, and he might just suddenly have so many of his barriers lifted – limbs reclaimed, and a voice with which to tell me to piss off, with regards the soppy bollocks above. I love him so much for who he is, and yet can recognise that this optimistic part of me hoping for such a day is both selfless and selfish in its longing. I want it for him, because I’ll never be sure, how happy he is – and the frustration and boredom he feels is often so overwhelmingly apparent. But I can’t pretend I don’t want it for me too. I want him to answer me back for my sake, as much as for his own.
It’s a tricky, and oh so unpleasant thing, that I find my mind skirting around occasionally. Chris has been this way all of his life, though with age, his mobility, and perhaps his engagement in the world around him has steadily decreased. It might be the cocktail of drugs that he’s taken to control his epilepsy, but more realistically it’s that his state is degenerative. I had managed to calmly ignore this, from the age of about five, when I’m told I was very definitely aware, to thirteen, when I had a rather unpleasant realisation as to why we’d spent so much time in Children’s Hospices. In the centre where Chris lives now, I’ve seen families visiting loved ones who have lost their ability to communicate after a car accident or a stroke, and wondered if that would have been any more bearable. For me certainly, I feel like I’ve had it comparatively easy. But would Chris have preferred a chance at communicating and moving freely to have it snatched away? It’s the kind of roulette that it simply isn’t my place to play, and not something I would feel kind about imposing on my parents. I have no way of predicting Chris’s response – to this question or to so many of the more pertinent ones I have for him.
Everything does, however, take a more sombre turn the further I look to the future. Chris’s health continues to deteriorate as my parents grow older. I know, and feel entirely miserable thinking about the fact that my Dad has to hope to outlive his son – because he assumes it to be in both of their best interests, and in mine too. As long as he is able to provide for Chris, he can sleep at night knowing that his son is well looked after, and that he will continue to live this way until he can’t go on. On a more selfish level, I think he knows that if Chris goes on without him, he won’t be able to let go of his own life with any sort of peace at all. And I know he wishes it for me too, that I might be able to raise a family that doesn’t have to revolve around Chris’s needs in the way that ours has sometimes had to. I’m far too selfish to contemplate loving someone to the point that I hope they don’t have to go on living without me. But I’ve seen it, not just in my parents, but in elderly, long married couples, and in the wider community of families of the terminally ill.
This community of families in similar positions really does exist, and I do still feel pleased to have been a part of it. It grows not just in hospices and hospitals, but even more organically in the suburbs and cities, and is never more apparent than at a funeral of one of its number. It’s full of a quiet understanding, that for all my love of language I could never hope to replicate in words. This the first time I’ve really written about some of the things I think about, when I think about my relationship with Chris – and yet it all goes comfortably unspoken when spending time in the company of families who too have to communicate in more than words. I know that many of them mull over similar questions as I do with Chris, in the silence when he doesn’t feel like responding, or beneath the largely incomprehensible noise when he does. Yet amongst the wider group, these questions go unasked, and remain reassuringly unanswered.
For all the words I place such a high value on, all I can do is wonder about what it might feel like without them. I have so many words with which to talk about Chris for who he is, a man I love so dearly, and yet, still default to talking about in terms of what he is not. Though I don’t know it for certain, I find great comfort in the fact that, for Chris, this seems not to be a concern. He can just throw himself into love, with the unreserved, unannounced pleasure of one unlimited by language. In this way, he’s far closer to the kind of self expression I can only hope that my language might one day convey.
Illustration: Sarah Moloney