Adam Pownall explains life with GBS.
Positivity: being able to stay positive even when you have a real good reason to be negative. Prior to March 2009 I was always the type to describe myself as a positive person, I liked to think that I strolled through life oozing confidence and being ever the optimist. However, it isn’t until you are dealt a life changing situation that those quite shallow beliefs are truly tested and you have to summon the strength to find a real positivity. It began one drizzly Sunday morning; I awoke with a slight hangover, though being slightly inebriated the night previous was not the cause of what was to come, it just made the beginnings feel hazier. I went about my usual Sunday with a strange sensation in my feet and toes, they were cold, as if I had slept the entire night with my feet poking from the end of the duvet, it was March so the temperature wasn’t excessively cold but no matter what my feet would not warm up.
I woke the next day, still feeling the same strange sensation in my feet which had spread into my lower legs and the hangover seemed worse, only that morning I hadn’t got a hangover, which clearly turned out to not be the case. The following day was worse; I now had pain, numbness and a tingling sensation in my legs. I took the day off work and went to see my GP. A brief consultation resulted in him telling me that I had a virus and the pain and lack of sensation in my legs was probably due to a trapped nerve. Over the next few days the decline continued, as did the lack of interest from the doctors I had seen. When the pain spread through into my shoulders, arms and neck I knew it wasn’t a trapped nerve. I began to worry, and rightly so. I was a 26 year old active, healthy, young man, what was wrong with me?
By the weekend I had collapsed, not a dramatic faint, I simply couldn’t hold up my own body weight anymore. An ambulance was called, arrived within minutes and took me to the local Accident & Emergency.
My decline continued at a pace. By the following Friday my whole body had shut down. I had lost all feeling, sensation to touch, I couldn’t move, I was suffering a pain which felt like the burning of the fire pits in hell.
I lost the ability to communicate. This was unkindest loss of all.
A nurse in critical care would have to blink my eyes, even my eyelids weren’t up for the fight.
I was totally aware in my mind, even though my body wasn’t functioning, I could still think, feel and need but had no way to express. I was “locked in”.
Looking back the moment of my greatest fear was when that Friday my breathing had got so bad that the consultants were telling me they were going to have to operate. They would anaesthetise me and perform a tracheostomy as I could no longer breathe sufficiently for myself. As I waited for my turn in the operating theatre my family had swarmed around. All I could see was their worried faces, the tears rolling down their cheeks, the gentle squeeze of a hand my brother gave my mum. I wanted to tell them I thought I was going to die. I wanted to scream at them to tell them to not look so sad and be supportive, their faces only made my fears worse. In a panic, my mind quickly fabricated the notion that I wasn’t going into theatre, I was actually going to die, why else would they all look so worried? They had made the story up so I didn’t worry. But I knew. I had caught on to their trick. Still the surgeons said I would be asleep for 2-3 days due to the anaesthetic and that I wouldn’t feel any pain for that time. This was a relief even though I still thought it was lies.
SPOILER ALERT I didn’t die.
I woke up to the next morning; they had lied to me, what happened to the 2-3 days of sleep? A large jovial nurse was the first to find me awake; she smiled with sympathy, and explained I must be a fighter to wake up so soon. Was my mind telling me to wake up to check that I hadn’t died?
I had gone from normal to paralysed in the space of 3 weeks. I was told there was a 95 % chance of full recovery from Guillain-Barre syndrome, this rare affliction which had debilitated me. A fear of being permanently scarred by this, or having some sort of disability for the rest of my life gave me inspiration to recover beyond all doubt. Shortly after the operation my decline plateaued for a week or so and thankfully a slow recovery began.
I spent 6 months in hospital in total. The latter 3 were in a rehabilitation ward.
I would spend my time in hospital going through countless physiotherapy sessions, all of which causing excruciating pain due to my nervous system being messed up, I had what is called hypersensitivity. This does not mean I would cry at any picture of a kitten, unfortunately, it meant that I would respond to touch in a variety of extremes. If a friend, or a nurse grabbed my arm it could either feel like someone was tickling me, or as if I was being branded by a red hot poker. Even though this prevailed I still gave my all in my sessions to aide my recovery. Even when I wasn’t in a session I would continue to do routine exercises, as movement came back, to pass the long days on hospital wards. Prior to me getting ill I was a performer and dancer, I had high levels of fitness, being this motionless was unusual for me but with support of the hospital physio team I used dance to aid my recovery. Every Tuesday evening I was allowed to leave the hospital to attend a dance class with friends. I would attend in a wheelchair at first then using walking aides when my movement got better. Even when chronic fatigue meant I spent the majority of the day sleeping, I would look forward to being able to express again even though it was limited.
My levels of positivity waned throughout my recovery, I would do what I could to get better, there were obviously days where I wanted to give in, I struggled with bouts of depression due to being lonely, feeling like a failure when I couldn’t take more than 5 steps unaided. I was tired, chronically tired. Maybe because I was trying too hard but when you give so much for little return it becomes laborious.
I’m pleased to say that through my positivity and determination I have made an almost full recovery, I still get odd moments of pain in my lower limbs and there is still a small lack of sensation in my feet and toes but physically I am fighting fit again. After coming through this with such a positive arc I reignited my love for playing football, there were times I considered I would never walk again so to be able to play for my team 2-3 times a week is something I’m truly thankful for. Through this new found positivity I am probably fitter now as a 32 year old as I ever was. I am an advocate for fitness and wellbeing and use this new level of positivity to inspire others around me.
My personal life has had many changes due to going through the ordeal, I am a real positive person now, and I am thankful for all the opportunities and see life in a brighter light. My career has flourished because of this; I am now a theatre producer for a leading regional theatre because of my commitment to making something of a life which was nearly taken away.
For me it wasn’t about trying to fix something that was broken, maybe it was about being given the chance to start over and create something better.
I regularly support GAIN Charity who are the official charity for GBS, and I go and visit any current sufferers I am made aware of to offer them my story as a away of hope and positivity to help them in their ordeal. Furthermore, I am currently working with playwright Nick Wood amongst a host of creative artists to begin research and development into making my story into a piece of small scale theatre to raise awareness of the illness and the charity in the UK.
Please visit http://www.gaincharity.org.uk/
to find out more about the illness and help raise awareness. Adam Pownall is a Theatre Programmer and Producer for a leading regional theatre in the UK, Derby Theatre. In 2014 he won the Olwen Wymark Award for supporting New Writing within Theatre for the Writer’s Guild for his work in opening and running Create Theatre a state of the art studio in Mansfield. He specialises in support of emerging companies, artist development and new writing and is a proud advocate for regional theatre in the East Midlands. Adam has a brief career as a performer, theatre maker and director and produced a stage play called Getting Better Slowly
to raise awareness of Guillain-Barre syndrome, a condition he was diagnosed with in 2009. The piece brought together his passion for dance, new writing, verbatim theatre with a focus on working with disabled artists.
Click here to read all about Getting Better Slowly.