"Being able to communicate...saved my life" - stroke survivor Clodagh Dunlop speaks of her journey to recovery

Clodagh Dunlop gave a powerful and moving speech at the launch of the anniversary exhibition of My Journey My Voice on 5 October - which you can read below. Clodagh recounts the harrowing days after her stroke when she was locked in and unable to communicate with family or medical staff and how, with help of her speech and language therapist, she found her voice again.


By Clodagh Dunlop

"Before April 2015, I understood the importance of communication. I had to effectively communicate as part of my job role, but as a stereotypical woman, I just liked to talk.

On the 6 April 2015 my world as I knew it was blown apart, a blood clot released into my brainstem causing a major stroke and leaving me with locked in syndrome. 

Locked in syndrome left me completely paralysed. Every muscle in my body stopped working. I couldn't talk, I couldn't make a sound. I couldn't move my head,my arms, my legs. One thing moved, my eyelids. 

For the first two and a half weeks after my stroke my only means of communicating was by blinking. I had a system of blinks. One blink for yes, two blinks for no, three blinks for I love you and four blinks for you're a moron. 

Take a moment to think, if all you could say was yes, no, I love you and you're a moron, how much you'd want to say in a day that would go unsaid. Now imagine that you have just woken in an intensive care ward, you are in pain, you are hot, your family are crying at your bedside. You would definitely have a lot that needed to be said.

That was me, it was terrifying, I felt more vulnerable than I'd ever thought possible to feel. My face wouldn't move, I had no facial expressions, no smile or frown, no grimace or raised eyebrow, no sound at all.

I could hear and see everything, but I was at the mercy of those around me. I looked lifeless. Many people didn't speak or just didn't ask closed questions or the right questions. Tears would fall from my eyes, my face didn't move, I made no sound, I couldn't wipe my tears. People would ask what is wrong? Imagine yourself unable to move any part of your body, or make a sound, how do you answer the question, "what's wrong?" 

Imagine nights when you can't call for help if you need it. You are placed in a bed knowing that the position you are placed in, you will remain in for hours. You can't move your position, you can't communicate that your nightdress is twisted or it's uncomfortable. You can't say "put back the fan you switched off, I'm much too hot, don't cover me with bed sheets".

Worse still you see the elderly patient opposite in distress, you want to call for help, but have to just watch, inside your head you are screaming at the top of your voice, "help, someone". You will your body to move but nothing moves, you watch until the machines monitoring the stats start beeping, you watch as medical staff run in and close the curtains, you listen as they fight to save him but then you listen and realise the battle is lost. The elderly patient had died. 

The elderly patient is removed from the ward, medical staff leave and glance over as they pass, in my head I'm screaming louder than I have ever screamed but all anyone can see is my peaceful body, lying in bed. I had lay, watched someone in distress, I watched as I knew they were going to die. I couldn't summon help, it goes against everything I am as a person not too help and as a police officer, I've taken an oath to protect and preserve life.

To not be able to communicate is the most terrifying thing I have ever experienced. 

My life changed after two and a half weeks when I was visited by a speech and language therapist. She assessed my condition and issued me with an electronic eye gaze spell board. Suddenly I could communicate by spelling out everything I was thinking, I could communicate with my family, friends, medical staff. I took control of my environment by getting my partner to make signs to spell out my likes and dislikes. I could finally sleep at night in peace, I could indicate to leave my fan turned on, spell out if I was uncomfortable.

Being able to communicate I believe saved my life. 

Meeting my therapist that day was the start of a journey with speech and language therapy. I'd always pictured speech and language therapists just helping children with speech difficulties, now I know they do so much more. They helped me to retrain my swallow so I could eat, they spent hours with me every week doing exercises to strengthen my voice box and mouth muscles. Each one treating me as a person, an individual, each one showing me patience. Each one listening to what I was spelling out and what I would attempt to say just as if I had spoken the words clearly from my mouth.

However as I battled to talk again, I was soon to realise not everyone treats you as a person when you have a speech problem, what you say is not listened too, people can treat you as though you have lower intelligence. 

This exhibition I think is powerful, Alison and the Royal College of Speech and Language Therapists have allowed my fellow participants and I to share a journey, highlighting the different communication difficulties. I hope the exhibition changes people's opinions of those with communication difficulties. It highlights that we are all individuals, as we don't communicate in what is considered a normal way, what we have to communicate should be listened to just the same. 

Alison, on hearing my story, felt it was powerful enough to share with the Northern Ireland Executive. Despite my communication difficulties Alison let me accompany her to an ad-hoc committee meeting discussing the Mental Capacity Bill. By sharing my story, we made a change to the Mental Capacity Bill in raising the importance of communication and early patient assessment by speech and language therapists.

I am very proud to have participated in the exhibition and I now think speech and language therapists are incredibly special people who I have a new found respect for.

Clodagh Dunlop, 15 October 2016