Life in my body... as a wheelchair user
Hollie-Anne Brooks, 31, was left unable to walk when a meningitis test went wrong
iwas packed into a sweaty, crowded gig on a warm June night when chills began to run through my body. My legs were aching – I struggled to stand – so my boyfriend, Richard, took me home. Thirty-six hours later, my body was taken over with sepsis and meningitis. I was 10 minutes from death when I was taken to hospital.
Up until then I’d been happier than ever – it was 2018 and I had celebrated my 29th birthday in Ibiza, and had a busy job in Central London. Richard and I had only started dating in January, but by February were planning to move in together.
Doctors diagnose meningitis with a lumbar puncture – where needles are put into your back to extract spinal fluid. But it kept failing – they had to try four times. I spent a few days in hospital and returned home with unbearable back pain. I was told this was normal and that the tingling down my left leg would go. It didn’t. Within days I went from walking with a stick to using a wheelchair, my left leg immobile. The failed lumbar punctures had damaged my neurosystem and I was diagnosed with functional neurological disorder. In short, my brain refuses to send messages to my leg. The first time I sat in the wheelchair, I froze as tears ran down my face.
Still, I promised not to let it get to me. I packed up my (now inaccessible) flat and moved in with Richard. I was made redundant from my job around the same time but saw it as a positive, knowing recovery would take months.
Since then, things have been far from easy. I’ve faced discrimination from public-transport employees – one video went viral after I was refused a wheelchair ramp. Facing other people’s judgements has been hard. On one night out, I was in a midi dress and heels, and a man joked that because I was dressed up, I didn’t need my wheelchair and should let him have a ride in it. For him, it was a bit of fun, but for me, it’s life. I later wondered if he’d have said those things to me if I’d looked what he considered “disabled”? Friends have also drifted away because they don’t know how to act around me. And when it comes to sex, Richard and I have had to learn over time – there’s no leaflet explaining which positions will work.
All these difficulties have spurred me on; I’m now a journalist, using my voice to help change society’s views on disability and challenge the inequality facing disabled people. I had no idea what being a wheelchair user would be like before I got ill. Now I’m determined to open people’s eyes.