Three weeks. Three weeks is all it took for me to go from being a healthy active young man in my twenties, juggling freelance theatre and dance projects, football and bar work, to being paralysed in a hospital bed.
When I woke up with tingling in my feet after a night out drinking and dancing, I knew something wasn’t right, but the last thing I expected was that, within days, I’d be unable to walk properly and that I’d be rushed in to hospital where doctors would have to operate to do my breathing for me and keep me alive.
At first I thought the odd, tingling sensation was part of an unusual hangover – my feet felt cold, as if I’d slept all night with them hanging outside of the end of my bed. But over the next few days the tingling spread up my legs, and was accompanied by pain and numbness. I visited my GP three times – at first they thought it was a virus, then a trapped nerve. But the diagnosis didn’t seem right, and as the pain and numbness spread into my arms and shoulders I got more and more frightened. A couple of days later I collapsed in the bathroom – I simply couldn’t support the weight of my own body. An ambulance was called and I was rushed to Accident and Emergency. As puzzled doctors tried to determine the cause, my condition deteriorated rapidly. I had lost feeling and movement in my whole body, and I was in excruciating pain. It was terrifying not being able to communicate – I couldn’t even blink. I was “locked in” – I could hear and understand everything going on around me, but I had no way of expressing myself to the family members and medical staff surrounding my bed.
When they diagnosed my mystery illness as Guillain-Barré Syndrome, they determined that they would need to perform a tracheostomy because I was no longer able to breathe for myself. As they wheeled me down to theatre I saw the puffy tear-stained faces of my family and became convinced that I was going to die and that they were lying to me when they said I’d be awake again in two to three days.
I actually confounded the doctors’ expectations when I woke up on the ward the next day. A nurse said perhaps it was because of my will to get better that I fought against the usual effects of the anaesthetic to wake up so soon. But there was a long road ahead. 95% of GBS sufferers make a full recovery, but it would take months and involve a lot of hard work and more strength of will.
My desire to return to my previous levels of health and physical activity spurred me on through months of painful physio and rehabilitation. I had gone from being incredibly physically active to not moving at all during the initial period in hospital. When I began physio, I had to re-learn how to walk, talk and eat. One of the after effects of the GBS was hypersensitivity, which meant that someone touching my skin could feel like intense tickling, or like awful, burning pain. I was also chronically fatigued and sometimes the exhaustion and slow progress were too much. I would lose hope and feel defeated when I couldn’t see an improvement, or when taking just a few steps felt too difficult.
Though GBS is a physical condition, it had an impact on my mental health. There were times when I felt lonely, depressed and like a failure. The support of friends, family and the medical staff helped me to keep moving forward and to reconnect with my determination to remain positive and get better, one day at a time. I had been a dancer before the illness, and I was able to incorporate dancing into my recovery.
Seven years on, I’m probably fitter now than I ever was. I still have some residual effects from the GBS – occasional pain in my legs, and some tingling and sensitivity in my feet – but apart from that I’ve made a full recovery. I’ve returned to working in the arts and have created a piece of theatre which is touring nationally, Getting Better Slowly, about my experience to help raise awareness of Guillain Barré Syndrome and GAIN, the charity that supports sufferers and their families. I work a lot with GAIN to promote their work and reach out to other patients, and I’m really pleased that GAIN is going to livestream the show on their website on the 26th February so it can reach audiences and people with the condition internationally as well as theatre goers in Britain. Going through an experience like this has made me thankful for all opportunities that come my way and given me the determination to make something of the life that was nearly taken away from me.