Connect Hackney


Audrey Donaldson – The Willingness to Live


Interview and introduction by Elizabeth Galloway from Connect Hackney Senior Media Group

Audrey was a healthy 35-year old mum when she began experiencing weakness in her body, which her doctor diagnosed as rheumatism. Within 48 hours she was unable to move her body or to breathe on her own. She had contracted Guillain-Barré syndrome, a very rare and serious condition that affects the nerves. Listening to Audrey’s story, of the illness and her two-year fight back to health, was very inspiring and moving. I wanted to share this with everyone, especially anyone who is thinking of giving up today.

What were the signs that something was wrong?
AD: I went on holiday and a week after I came back I felt weak. I didn’t take any notice of it. My hand was getting tired, but still not taking any notice. I got in touch with my doctor – he said that I had rheumatism in my arms and legs and he gave me some tablets. I could not even go and pick them up. I asked my friend to go pick up the tablets.
The evening I was just sitting, but I had no pain. My son was sitting with me. I got up to make myself a cup a tea. I got in the kitchen – I couldn’t lift the kettle up. I had to use both hands to use the kettle.
I went to the bathroom, I sat at the side of the bath and I fell on the floor. I called my son to help me – he came and helped me into my bedroom. I laid down and went to sleep. Early in the morning, I woke up and tried to get up. I tried to move my legs, my legs would not
move. I tried to move my hand, it did not move. My head neither – I could not get it off the pillow. So, I called my son. He came and said, “Mum, what’s wrong?” I said, “Can you move my legs and hands?”
As he tried to move them, they dropped back onto the bed. I said, “Can you call mum.” She came around, she lifted my hands and head – they dropped back. She called the ambulance.

When you went into hospital did you realise what was happening?
AD: I didn’t know anything. Most that happened around me, I could not remember. I remember now that when I was in Guy’s one of my sisters came to see me, by this time I couldn’t talk, but I could see she was there. I remember the nurses said to her, “She’s going to be here a long time.”
I don’t remember when I left Guy’s but I remember being back at the Homerton in the intensive care unit. My mum use to come visit me, but I couldn’t talk. One day mum said, “All right, we are going to talk! This is what we are going to do – if I ask you a question and the answer is yes, you will blink twice, if it’s no, you will blink once.” So, I did that, every day I had her come in and we would communicate. From there, the nurses started to do the same.
The only thing I could move was my eyes.I don’t know if I had a body, arms, anything. This carried on for months. I did not know what day of the week it was, I didn’t have a clue. They said to me, “You have now been in hospital for 100 days.”
Still I could not talk, but by this time I’m having physio and slowly things are getting better. They get me up and slowly try to take me off the machine so that I breathe on my own.

Please tell us about your rehabilitation.
AD: Once I was at rehab, things started getting better. I never said, “Why did this happen to me?” I met two other patients at rehab, two girls that I became close friends with. They gave me a frame and showed me how to use it. They would say, “You have to walk from here to where you get your lunch.” I can tell you, that was not easy. I fell so many times, saw so many stars! It’s just crazy but I would not give up.
Slowly, I stopped using the frame. They said, “You can start using crutches.” I thought – ”OK, I’m on the mend.” Slowly I can start going home for weekend, but at the same time I still could not do anything myself. I think the first time it really hit me was when my sister had to lift me and feed me. That day I had a breakdown. She asked me, “What’s the matter?” I said, “I can’t feed myself.” I was really down for a few days. I remember one morning when the doctor came to see me and I asked, “Will I ever use my hands again?” He said, “I can’t say, I don’t know.” I started crying and cried all day.
The following morning someone said, “Why are you crying? You are going to do it, you will use your hands”. By this time, I didn’t think about my legs, all I was thinking about was using my hands. In the following days, I got up and thought, “I’m going to use my hands”. From then, I never looked back.

What advice would you give to somebody who has Guillain-Barré syndrome?
AD: It’s hard, but don’t think “Why me?” It could be anybody. Just think positive. The more you push the better you get each day. Have a goal and think positive – every day is a different day.

Any final thoughts?
AD: I would like to finish by thanking family and friends who have helped me get this far.