Zoe McCallum's story

On the second of January this year I had a seizure. I was sitting in a pub with two friends chatting when my body shook slightly, as though I had hiccups. Instead of my shoulders shaking, though, it was my jaw. In a second, it detached itself from its usual place, dropped downwards, then clamped upwards against my teeth. Then it did it again. I regained control long enough to ask my friends whether I was imagining what was happening to my face. They laughed, assuming I wasn't serious. I clamped my hands over my mouth to hide my malfunctions from them – but before I could explain again, my eyes rolled back into my head, my whole body went rigid and I blacked out.

I woke up in a white room to a row of faces staring down at me. I recognised one of them. I had no idea I was in hospital. I jumped from my bed and clamped on to him, yelling "we have to get out of here! quick!" as though we were spies who had just been captured by the enemy. Then I lost consciousness again. I was vaguely aware of being sick but felt like my brain was floating somewhere above my body. Then I was strapped down to a bed and rolled somewhere. I later learned it was for a brain scan. At the time, I only heard the words 'brain tumour' and 'stroke' and I blacked out again

After a day and a night, the staff at the hospital found nothing wrong with me and sent me home. Spontaneous seizures occurred from time to time, without explanation. The left side of my body was weak. I couldn't wiggle my fingers in my left hand easily. It was three hours from Devon to Hampshire and I slept the whole way. I vaguely remember seeing the painted sign of our family home when the car rolled into the driveway. I also vaguely remember trying to work (I found my notes later and they were gibberish). I had a second seizure two days later; and it took me much longer to come around from this one. I have learned that I slept continuously and didn't eat for three days straight. All I really remember is clutching my head and occasionally waking to the concerned-looking faces of my family. I bit my tongue in the ambulance.

After five days in hospital, I was diagnosed with meningitis. The swelling affected the parts of my brain that govern my intellect and personality, so anybody trying to chat to me in those few days had a strange experience. I had an interesting chat with the neurologist during my clinical examination in hospital:

Him: Please count backwards from one hundred in sevens.
Me: 100. [Pause]. 93 [Pause] 88.....

Him: What is the meaning of the phrase 'a stitch in time saves nine?'
Me: It means...uh....it means....hmm. Cats have nine lives.

Him: What is the name of the current prime minister?
Me: Dickhead.

Him: You were in India before this happened? What were you doing?
Me: Avoiding brain doctors.....in emerging markets.

During that time, I had a hold of my Blackberry and the capacity to use it to change my facebook status. I had forgotten how to use facebook, so private messages to friends were uploaded as status updates to my whole contact network: "Dear Ben, please come and visit me; mum is here and Fab will be later, love Zoe". After one morning of movie watching and throwing up, I uploaded every quote I could remember from 'Gladiator'. In my viral brain-haze, Russell Crowe was an oracle, uttering words of wisdom from the afterlife.

They let me leave hospital for home after around ten days. I have been here for over two months now, recovering. The virus has almost left me, though I have remained pinned to the bed for the last week because complications from a recent lumbar puncture have left me unable to sit or stand without experiencing a crippling headache. I haven't seriously exercised now since last year. I lost a stone on the drip and gained most of it back through being sedentary. I have spied deer from the view from my parents' cottage over the fields behind the house; and the sound of the wind beating against the window moved me when my spirits were low. I'm hoping to be well enough to get back to work in another two weeks.

I have learned a lot from being ill, despite everything. I had to re-learn confidence to leave the house when I felt as though I had lost full control of my body. I was terrified of having another seizure in a public place. I spent last year working in disability rights advocacy but had no real firsthand understanding of what it meant to feel fundamentally different to those around me. To watch a sitcom where the main character twitches slightly and find that this display of difference made the studio audience laugh. Seizures were a social joke. As I began to recover, I could feel myself unable to function at the same brain level as before; and listening to intelligent conversations pass through me as gibberish was terrifying. I thought I was losing my mind and losing control. I had given sessions on international law and challenged a high court judge in 2011; and now in 2012, I struggled to articulate what I wanted for tea.

One night in hospital, I felt very close to death. Now that I am well and understand more about my condition, I know that I never really was: viral meningitis is serious and my case was acute; but self-limiting and rarely life-threatening. I had never before feared dying. But until that night, dying had never felt very close. I was convinced I was close to death – in a way that is only possible in the dark, in that space of night where fears can be blown and mis-shapen into premonitions – and I felt helpless. The love that I have for the people close to me – and terror at the thought of leaving them – swelled inside me and crushed my lungs. I learned in that moment I was not as brave as I thought. I longed for my life. I sent texts to the people I love and clutched for the strength to let myself fall asleep, in the expectation it was my last night. I woke up enormously surprised to be alive and nearly called the nurse 'mummy'.

The poem below struck me because it explains the experience of a seizure from the perspective of a loving onlooker, rather than a patient. It conveys the sense that a seizure is very similar to going away, temporarily departing the world; and how utterly precious it feels to return. I have only just felt that I am 'returning' – back as myself – in the last week or so. I will try my hardest not to ever take my health for granted again.

The Returning  by Jackie Kay

And when you came back, Matthew
- and your four-year-old body stopped its shaking -
and your temperature fell to nearly normal -
You had lost all your words: your soft mouth
silent as a rosebud, and your cheeks lit

like the sky after a double rainbow
all your words flown like winter birds
as if the fit shook every new word
just learnt off your tongue;
and when you came back, Matthew, gift of god,

you could have come back as a girl,
your curly hair grown long in the space
you'd been gone, it seemed, and softer;
soft as the new beautific smile on your face,
benevolent, free of the world's wrongs.

I held your small shape reborn in my arms;
each eye shed a single tear, and I waited and held my breath.
And then I saw a silent word on your face and you were
back, and full of grace, back as if back
from the long-lost, the missing and the dead.

Zoe McCallum
March 2012