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Bildeston aphasia sufferer Stephen Lightly speaks out about experience as Stroke Association launches awareness campaign

A former Suffolk maths teacher who had to relearn how to speak after a stroke is backing a charity awareness campaign.

Stephen Lightly, 62 of Bildeston near Hadleigh, has aphasia, a condition which causes difficulties with language, after he suffered a stroke in July 2020.

The father-of-three is now backing a Stroke Association campaign to raise awareness of aphasia and the problems it can cause for sufferers.

Stephen Lightly. Picture: Stroke Association
Stephen Lightly. Picture: Stroke Association

He said: “My speech in hospital was terrible, although I thought that it was totally normal myself. I would avoid contacting people directly and would try to use email.

“I soon became really aware of my speech, and it really knocked my confidence. I knew I couldn’t return to work at the school any time soon, and that was really upsetting.”

Stephen has managed to get back to some of his favourite hobbies, including producing math worksheets for schools, and even recently creating a board game and children’s book.

Stephen had a stroke in July 2020, leaving him with aphasia. Picture: Stroke Association
Stephen had a stroke in July 2020, leaving him with aphasia. Picture: Stroke Association

He said: “My speech improved through talking at home with my family, the help of the Stroke Association, and the people at Livability Icanho Brain Injury Rehabilitation Centre.

“I was referred to the Stroke Association’s Suffolk Communication support service, which hugely helped me. I took part in several of the Stroke Association’s online Zoom meetings during the Pandemic which helped me to continue to speak to others and get support.

“My youngest daughter is now 9 years old but 6 at the time of my stroke, and she has helped me a lot. I think that she was very deeply hurt by my stroke and near death.

“We are just beginning to do things together again, I guess that we are healing together.”

Stephen hopes by raising awareness that people will come to understand the condition and its symptoms, many of which come with misconceptions.

“I feel like lots of reception staff need to be trained to understand people withspeech problems easier, particularly medical receptionists,” he said

“It can be scary and frustrating or people living with aphasia, but I feel like the biggest misconception is that a speech problem is accompanied with hearing and understanding problem.

“Having aphasia can be mistaken for being drunk or dumb. I find that really hard to be faced with,” he added.

According to the Stroke Association, there are 1.3 million stroke survivors living in the UK and over 40 per cent will experience aphasia after their stroke.

New research suggests most Brits don’t know about the disorder, with two thirds of people in the East of England who have heard of it being unclear as to what it actually is.

The Stroke Association has launched ‘When the Words Away Went’, a documentary about three stroke survivors living with aphasia embarking on their journey to find their voice and rebuild their lives.

The documentary aims to equip people with the knowledge, understanding and confidence to support those living with aphasia.

‘When the Words Away Went’ will be online at stroke.org.uk/film or stream on Channel 4 from 26 May.

Juliet Bouverie OBE, chief executive of the Stroke Association, said: “Aphasia is very common, affecting over a third of stroke survivors, so it’s disheartening to see such low awareness and knowledge of aphasia amongst the general public.

“Most of us can’t imagine living with aphasia, but it makes everyday tasks like getting on the bus or talking to a friend daunting, made worse by misconceptions that people with aphasia lack intelligence. This can often lead to anxiety and depression, feeling excluded from society and difficulties with personal relationships.

“We want to encourage everyone to watch our new documentary ‘When the Words Away Went’, featuring stories from three inspiring stroke survivors impacted by aphasia, so the public can better understand the condition and become an ally to those affected. Together we can help make the lives of those living with aphasia a little bit easier.”