Stroke left Southampton nurse speechless and ‘trapped behind a glass screen’

A Southampton nurse who lost the power of speech after a severe stroke has shared how it left him feeling like being “trapped behind a glass screen”.

Joel Fraser, 42, collapsed in his bathroom as he was about to take a shower.

The stroke left him with aphasia, a condition which causes problems with language and communication, affecting speaking, reading, writing and understanding but not intelligence. He was also left housebound with anxiety.

“I couldn’t speak properly for six months,” said Joel, who is also known as Mohammed. “All I could do was grunt or change my facial expression. I needed to learn to communicate again.”

He is sharing his story, with the help of his wife Janine, to mark Aphasia Awareness Month (June) and raise awareness of the vital support offered by Stroke Association’s Hampshire Communication Support Service.

Joel said: “Language is a horrible thing to lose. It feels like being trapped behind a glass screen. The Stroke Association helped me gain back some confidence and self-esteem.”

His stroke happened in September 2022, as he got up to go to work at Queen Alexandra Hospital in Portsmouth. His two young daughters, Amirah and Nazrah – then aged ten and seven – discovered him collapsed on the floor and thought he was joking around.

Joel said: “I didn’t realise my hand wasn’t working. I tried to grab onto the towel rail, which I ripped off the wall, trying to steady myself. The next thing I remember, I was on the floor and couldn’t get up.

“Amirah, had seen me and thought I was playing a game of ‘zombies’ with her, but when Nazrah, saw me not responding, she screamed for her grandma.”

He was rushed to Southampton General Hospital, unable to move the right side of his body and only communicating through eye movements. He received emergency surgery called thrombectomy, which removes blood clots and restores blood flow to the brain.

The surgery was successful but the problems caused by his aphasia were immediately apparent.

Joel said: “I tried to get out of bed to go to the toilet. Because I couldn’t speak, the staff didn’t know what I was doing. They thought I was confused.

“Having no speech is a scary ordeal because your needs are not heard or met and there is miscommunication. I felt trapped in my own body.

“Although I knew everything in my head, I couldn’t bring it out in speech. I couldn’t say my name. I couldn’t speak properly for six months. All I could do was grunt or change my facial expression. I needed to learn to communicate again.”

Over the next four weeks in hospital, his rehabilitation became a family affair.

Joel said: “My daughters enjoyed getting involved with my speech and language therapy. They made me flash cards with simple words and pictures for ‘toilet’, ‘shower’, ‘hungry’, ‘thirsty’.”

Joel’s wife Janine, who is also a nurse, described the slow progress of supporting him to recover his speech.

Janine said: “Gradually single words started to emerge, but he would get stuck on certain ones and over-use these, which made it hard for other people to understand what he wanted. He would repeat ‘begin again’ over and over, and call everybody ‘Mike’.”

Joel, who had been a nurse for over two decades, never expected to have a stroke at 42 years old. He was forced to take early retirement and struggled with his mental health.

He said: "My world turned upside down. I was healthy and fit. I am young. I have a normal heart and cholesterol levels. ‘Why me?’

“I could not go to my friend’s house for a curry or to a restaurant with my wife and daughters. I could not talk to strangers or go on a picnic, cinema, or bowling.

“I experienced anxiety for the first time and lost all sense of confidence. I refused to leave the house.

“Worries and hardships I kept to myself, because I didn't have the language to express my feelings. It felt very lonely, like I was a prisoner in my own body. I wouldn’t wish it on anyone.

“I spoke perfect English with a good telephone manner, but now it’s all gone.”

Joel’s NHS Speech and Language Therapist, who had initially worked with him, referred him to the Stroke Association’s Hampshire Communication Support service for ongoing support. The charity’s local support coordinators work with stroke survivors and their families, friends and carers who are living with the effects of communication problems.

As well as one-to-one support, the Hampshire Communication Support service also offers communication workshops. These are small groups led by a coordinator which provide stroke survivors with a supportive space to develop and practise their communication strategies, build confidence and receive valuable peer support.

The service is funded by the Hampshire & Isle of Wight and the Frimley NHS Integrated Care Boards.

Joel and Janine met local Stroke Association stroke support coordinator Jo at the local coffee shop. Joel asked Janine to order his coffee for him because he was too self-conscious about his speech.

Jo gave the couple information to help them understand aphasia and tools to help Joel regain his independence, such as a communication card explaining stroke and aphasia. He then attended a six-week course of workshops.

Janine said: “The communication workshop gave him confidence and a greater insight into stroke effects. It helped him feel grateful for the abilities he still had.”

Joel said: “Meeting Jo really helped. By the last session, I was ordering my own coffee!

“I can now say my name, address, and postcode. I take the girls to school and go to town by myself. I wear a lanyard with a card to alert people I’ve had a stroke, explaining aphasia. I have lost my identity, but the lanyard makes me feel a bit more protected.

“I continue to struggle today, but I have a second chance at life. I have hope that my aphasia will get better, and I will reach my best potential.”

Jacqui Cuthbert, the Stroke Association’s Associate Director for the South West and the Channel Islands, said: “Around a third of stroke survivors will have aphasia, leaving them feeling isolated and alone and this low self-esteem can lead to long-term psychological distress.

“Our charity has the skills and experience to help people with these communication disabilities. Our services enable people to continue to relearn skills of communication and to rebuild their confidence.”

To find out more about the Stroke Association’s Hampshire Communication Support Service, visit www.stroke.org.uk, call 01256 471301 or email HantsCommunicationSu@stroke.org.uk.