Shock read: A virus stole my life
Hayley Bray was looking forward to a visit from her sister, but she woke up in a hospital bed
As my younger sister Sadie, then 24, rested her head on my shoulder, she sighed deeply. It was a Friday night and we were hanging out together watching our favourite TV show, Love Island – a guilty pleasure of ours. Only two years apart in age, Sadie and I were best friends as well as sisters. Spending time together like this wasn’t unusual, except we’d usually be lounging on a sofa at home, sharing a bottle of wine and planning our next trip abroad. Instead, Sadie was curled up next to me on my hospital bed in Majorca, Spain, and our conversation was one-way – she talked and I listened. Because that was all I could do. And even though I knew Sadie’s head was on my shoulder, I couldn’t feel it. I couldn’t feel anything from my neck down, and I had no idea if I ever would again.
I’d moved to Spain six weeks earlier, in April 2019, after securing a job at a hotel in Ibiza as a nursery nurse, and Sadie had already booked flights to visit me. ‘I can’t wait to see you,’ she’d said over the phone a few days before her planned arrival.
That afternoon, after finishing my shift at work, I was exhausted, but when I tried to sleep, I couldn’t. I kept feeling like I needed to go to the loo, but no matter how many times I got up I couldn’t seem to relieve myself.
Trapped and scared
I put it down to a bladder infection, telling myself I’d get antibiotics the next day, and eventually I drifted off, but the next morning my tummy ached and I could barely muster the strength to sit up in bed. I went to see the doctor and, after explaining that I’d not been able to empty my bladder since the day before, he called an ambulance. I was taken to hospital to have a catheter fitted and told I’d need to be kept in overnight.
By now, I was feeling worse than ever, and after texting my mum to let her know what was happening, I fell asleep still clutching my phone. The next thing I remember is waking up surrounded by beeping machines and familiar voices talking to me. ‘It’s OK, we’re here now,’ I heard Sadie saying. Opening my eyes, I saw her sitting beside my dad, but as I opened my mouth to speak, nothing came out. I couldn’t move my arms, or even my hands – my whole body felt as though it had been weighted down with lead.
Sadie placed her hand on my arm and, expecting to feel the sensation of her skin on mine, I panicked when I felt nothing at all. I was terrified and upset, especially as all I seemed able to do was use my facial expressions and eyes to communicate.
Doctors told me I’d been unconscious for five days. ‘You suffered lung failure so we’ve had to put you on a ventilator,’
‘I tried to speak but nothing came out’
a doctor said. It explained why I couldn’t speak – there was a tube down my throat. I struggled to stay awake for more than a few minutes at a time and the next few weeks seemed to pass in a haze of waking up, seeing Dad and Sadie still sitting beside me, and then falling back to sleep again.
Eventually, I was transferred to a bigger hospital in Majorca, for tests, but doctors had no idea what was wrong with me. I was completely paralysed from the neck down, yet it was a mystery as to why it had happened.
Feeling trapped inside my own body was terrifying, and having to rely on nurses to move me over in bed when I started to ache, to brush the tangles out of my hair and to brush my teeth was demoralising.
Doctors gave me a treatment called plasma exchange therapy, which cleaned my blood and removed antibodies, and gradually, as the weeks passed, I began to regain the sensation in my fingers and arms.
To help me communicate, nurses gave me an alphabet board, where I could painstakingly spell things out.
‘So thirsty,’ I wrote with the letters, the board resting on my legs, which still felt completely numb.
Sadie was only allowed to visit for two hours a day, but her visits were the only things that kept my spirits up. She’d bring her ipad and we’d watch Love Island together, and as she chatted away about all the contestants, I felt normal – even if it was only for a couple of hours.
So many questions
In July, I was flown home to Kent and Canterbury Hospital – where, at last, the tube in my throat was removed and I was able to breathe by myself again. Talking in a croaky voice, I begged doctors for answers, only it took another four months before finally, in October 2019, I was diagnosed with acute disseminated encephalomyelitis (ADEM).
‘It causes inflammation in the brain and spinal cord, and is usually caused by a viral or bacterial infection,’ a doctor explained.
It was such a rare illness, and nobody could be sure how well I would recover or if I’d ever regain all of my mobility again. Even so,
I had to have hope. ‘I’ve got to get my life back,’ I told Sadie.
Following daily physiotherapy, I started regaining more control in my arms – and after pushing myself to practise, I managed to brush my teeth and eat by myself.
Finally, after eight months in hospital, in February 2020, I was discharged. But as I was wheelchair-bound, I had to stay in a rehabilitation centre until May 2020, when I moved into a specially adapted bungalow near to my mum.
Never giving up
Now, with two carers coming in each day, I’m able to live an independent life, although it’s very different from the one I thought I’d be living in my 20s. These days, everything I do has to be carefully planned, even popping to the shops I need to know if my wheelchair will fit through doors or if there’s a ramp. I’m still close to my friends but it’s hard not to feel envious when they talk about nights out and holidays.
My main focus now is my rehabilitation and I have regular physiotherapy sessions where I push myself as hard as I can every day. Whether that’s holding myself up in my standing frame for a few extra seconds, or massaging my legs and feet in the hope of feeling a new sensation that I haven’t had before.
A doctor recently told me I’d never walk again, but it has made me more determined than ever to prove them wrong. Of course, some days it’s hard to stay positive, but one way or another I will get back the life that was taken from me. ● Hayley and her family are raising money to continue her life-changing physiotherapy sessions. To donate, visit justgiving.com/crowdfunding/hayleybray
‘I push myself as hard as I can every day’