Wide Awake IN A COMA
My husband thought I was brain dead and almost switched off my life support machine… ALL I COULD DO WAS LISTEN TO TALK OF TURNING OFF MY LIFE SUPPORT
As I stretched to turn off my beeping alarm clock, I felt pins and needles spreading across my toes. ‘I must have slept funny,’ I thought to myself, wriggling my feet around before going to wake up my son David, four.
After limping around at work all day with numb feet, I headed straight to my GP’S.
‘It’s probably nothing,’ I said to my doctor, a little embarrassed.
But she sent me straight to A&E and I called my husband John, 58.
‘You have had a bad run of cold and flu lately,’ he said, as he sat with me. ‘I’m sure it’s nothing.’
The sensation started to spread up my body and my breathing got so bad, I was admitted overnight to be monitored on a respiratory ward.
As John went home to care for David, I tried to sleep, but I felt my breathing slow right down… and then I crashed.
Doctors rushed over and hooked me up to a ventilator. My heart was shocked three times before it restored to its normal rhythm.
Once I was stable, I was transferred to intensive care.
Although everything was a little hazy, I was still aware of the commotion of doctors and nurses all around me on the ward.
I went to open my mouth to speak, but no sounds came out. My face didn’t even move. Then I tried to move my limbs, but my entire body had become completely rigid. Fear started to set in. ‘Hello!’ I screamed from inside my lifeless body.
When John arrived, I could hear the doctors talking to him.
‘During the shock to Jenny’s heart she suffered a lack of oxygen on the brain,’ the doctor said, gravely.
‘She is still with us, but we are keeping her alive on the ventilator.’ He went on to say that my whole nervous system had expired and that I wasn’t even responding to basic reflex tests they had done. Even my eyes were fixed and dilated.
I couldn’t see John’s face, but he sounded devastated. ‘I’m still here,’ I willed. I knew I was locked in my own body and all I could do was listen to the general chit chat of the ward.
But by far the worst conversation I heard was the one between John and one of my consultants. I heard the doctor say that they were unsure if my mental ability had been impaired in any way when I was starved of oxygen a few weeks earlier. ‘What are your wishes on her continuing to be kept alive on the ventilator?’ he asked John. My stomach lurched and I started to panic as I soon remembered a conversation John and I had some years before. ‘If ever I was in that situation - I’d want you to just switch me off, John,’ I told him. He had agreed. It was blunt but
true. I didn’t ever want to be a burden on anyone. Now were those words coming back to haunt me? ‘I think we should give her some more time,’ John said. I mentally breathed a huge sigh of relief. ‘Thank you John!’ I cried out in my head. A few days later, I was wheeled to theatre for a tracheotomy which would remove the tube from my throat. Ten days later I opened my eyes to find myself in a solitary room with my breathing easier, but still unable to move. A doctor could see I was trying to communicate. He explained that I had developed something called
I could hear everything but couldn’t move
I willed my husband to go against my wishes
Guillain-barré syndrome. It was a rare condition where the nervous system is attacked by the immune system, often caused by a viral or bacterial infection. ‘You’ve been very lucky,’ he said. All I could do was click my tongue in response.
But despite knowing it was going to be a long road to recovery, something was telling me that it was all going to be OK.
While I was awake but unable to move, I had to come up with various ways to pass the time and stop myself from going mad. In my head I sang and did maths puzzles.
Gradually, as the days passed by, my body became less numb. I could feel the cotton cushions I was sleeping on and the nurses’ hands when they rolled me over.
But I was in constant pain. Being washed with a flannel felt like being scrubbed with sandpaper.
To help communicate, I was given a special spelling sheet where they would slowly point to each letter of a word and I’d click my tongue.
It was a long and arduous process, but seeing my close friends and family when they came to visit was always the highlight of my day.
The person I missed the most was my son David.
It had now been over a month since I last saw him and I’d missed his fifth birthday.
But John and I had decided that the machines and wires would be too scary for him. While I was stuck in hospital, John acted like a single parent. He became responsible for it all - the shopping, cooking, cleaning, and taking care of David of course.
I was so grateful to him for everything.
One day I plucked up the courage to ask a nurse if I’d ever be able to walk again.
She said they were hopeful that in time I would - so I tried my best to stay positive.
Once I started to get my voice back, John suggested bringing in David to see me. I was so worried about how he would react, but David was thrilled to see me. And I was so thrilled to see him. ‘David, do you know why Mummy is in hospital?’ I asked him. ‘You’re not well,’ he replied, bravely. ‘My legs and arms don’t work but when I get home, I’ll be as good as new,’ I reassured him. When it was time to leave, he blew me a kiss instead of hugging me as it would have been painful. Seeing David was all the motivation I needed. ‘I have to get better now, for David’s sake,’ I told myself. As the weeks passed by I continued to make slow progress. The feeding tube was eventually removed and I started speech and language therapy. Learning to walk again was the hardest part, but, with John’s help, I battled on and eventually my efforts paid off and I was finally allowed out of the hospital. Being back with John and David was amazing. I even challenged myself to a 5k charity race which I completed walking, despite all the pain. ‘I’m so proud of you!’ John beamed. I wouldn’t be here today if it wasn’t for his patience and his love. He might have gone against my wishes, but I’m so very glad he did!
Jenny Bone, 38, Leighton Buzzard I had so much to live for
The 5k walk was a challenge
Nothing will stop my recovery
Something told me I could get through it