to control, although there might be a faint possibility that, if the electrical activity in my brain is in one place, I could have an op that could make me seizure-free for the rest of my life.
‘This is a really personal decision,’ he said, ‘and because of the pandemic, I wouldn’t come off the meds until that has settled, whenever that is.’
‘What about my kids at school?’ I whispered. ‘I can’t risk having a seizure in front of them.’
‘You could lower the dose in the summer holidays,’ he suggested.
It all sounds so simple in theory, but as he had pointed out, there is always the risk I could have a seizure even in several years’ time and that thought will always lurk in the back of my mind like a marauding shark, silent, deadly and constantly there. I wouldn’t be able to drive for two years if I have a breakthrough seizure. My freedom, everything I’ve now built up slowly, painstakingly again from the beginning – that would all go and what about my family and friends? How will it affect them?
The thought of coming off my meds is a wonderful one, but at what cost? This has become my normal, this new existence on epilepsy meds – not one I’ve chosen admittedly, but now just like the idea of leaving lockdown, I’m not sure if I’m ready to leave the security of what I know to move forward into the unknown.
Chapter 32
Jack
I hear a noise from below, whilst I’m hovering restlessly on my balcony. I feel so trapped by this wretched lockdown, I want to be with Sophia to support Bertie when he reads that letter – he’s an old mate after all. I so badly want to go and meet Tilly with her, just walk to the park. It’s a simple enough request in ordinary circumstances. I look out over the rooftops and the scene below in the courtyard and wonder if this is what prisoners feel like. Although probably not; even they’re allowed outside for exercise every day.
As I observe the suburban mass in front of me I imagine what it would be like if we could see this virus, as though it were visible in blue and red clouds, spiky round shapes suspended in the air like in the images on the news on the television, like in some weird sci-fi video. I guess at least if we could see it, we would know what we were avoiding; as it is, we all see suspicion in each other’s presence, in everyday objects, in the very air we breathe.
I hear the noise again, suspiciously like a sob.
‘Sophia?’
There’s no response, but another muffled sniff.
‘I know you’re there.’ I suddenly realise if Greg or anyone is out on their balcony, they’re going to think I’m mad out here talking – for all I know – to myself. But I know she’s there, I can sense it.
‘Yes?’ she finally answers.
‘What’s wrong? Are you okay? I mean obviously you’re not because I can hear you’re crying.’ Oh shut up, Jack, you’re babbling now.
‘No I am okay, it’s just I had to talk to the specialist at the hospital and …’ She breaks off. ‘You know how it is.’
Her words bring back a flood of memories. A stream of well-meaning specialists and doctors, one after the other, throughout my childhood and teenage years, telling me my life wasn’t going to be how I planned, that it would be full of restrictions, then asking me how I felt about it. ‘I know exactly. Many a time I’ve come away from the hospital wanting to cry or shout and break a few things. Mind you I’ve only had one doctor who really wasn’t too understanding.’
‘No,’ she sniffs again, ‘although I know what you mean. I had one like that too, but mine’s lovely. It’s just he’s said I can maybe come off my meds.’
‘But that’s amazing … isn’t it?’ Then I feel stupid for saying that. I know how it is; I’ve been there. You just get used to one thing, which takes goodness knows how long, and then things change and you have to readjust all over again. ‘I don’t mean that, Soph, I mean it’s positive you maybe could come off the meds if you want, but I’m sure you have a choice.’
‘Yes I do, but it all feels a bit much at the moment. I just want to shut my epilepsy in a closet and forget about it.’