Tom, 59, of Gilmerton in Edinburgh, had a stroke in June 2016.
His stroke left him with aphasia. The speech and language disorder means he struggles with his speech and can forget or mix up words, or unintentionally use swear words.
The impact of his stroke affected Tom’s mental health deeply and brought him to the brink of suicide.
Tom, a former chef and amateur football referee, now wants to share his experiences to help others understand the aphasia and raise awareness about the impact of stroke.
Living with aphasia
Father-of-four, Tom, said: “Trying to speak after my stroke was one of the hardest things ever.You’re trawling through the words in your head. People find it to be an automatic thing to find a word. But if you’re trawling round and round and you can’t see it and you can’t say it, another word comes out in its place and I sometimes put words that I don’t mean into sentences.Tom, stroke survivor
"There can be swear words in there – I think that’s followed on from being a chef. When it happens, I feel very embarrassed.
"When you have aphasia, you find people shout at you when they talk to you. You get that all the time.
"People need to know that those with aphasia are not dumb. There’s a person behind that voice who is struggling. It’s very hard to get these words out. It exhausts you."
Tom's stroke experience
Tom had his stroke while he was working as a breakfast chef. He collapsed mid-shift and his colleagues immediately called 999.
Tom said: "All I remember is my boss asking me if I am okay, and then I ended up on the floor.
"One of the managers was asking me questions because he was on the phone to the ambulance service. I could hear what he was saying but I couldn’t answer him. I thought I was answering him but he couldn't understand what I was saying. I couldn’t move – it felt as though someone was lying on top of me.
"I didn’t know what was going on, I thought I'd just fainted. It was a really strange, near enough an out-of-body experience, because you can’t do anything for yourself.
Developing frustration with communication
"I couldn’t talk. Later, when my colleagues came to visit me in hospital, they said that all I was saying was, 'bobble, bobble, bobble'.
"Doctors and nurses were asking me questions and I couldn’t speak. I couldn't answer them. The frustration started then. My wife, Joanne, had to answer the questions for me.
"It wasn’t long, before they diagnosed me with aphasia. I couldn’t speak, I couldn’t get the right letters or the right words, and I couldn’t find the words I wanted to say.
"I was angry and frustrated because I knew the words, but something else would come out. You’d see the look on people’s faces, and I’d think, did I say something wrong?"
Tom received speech and language therapy and slowly began to regain his speech and language. But he battled with anxiety and severe depression.
A year later, just as Tom had begun a phased return to work, he had a second stroke.
The effects of Tom’s strokes, which include severe fatigue, noise sensitivity and right-sided weakness in addition to his aphasia, mean that he is no longer able to work.
The life-changing impact of stroke had huge repercussions for Tom’s mental health and left him suicidal at his darkest points.
Tom said: "Even when you can’t produce a word, you still worry. I still hadn’t taken the stroke in. Everything was going through my mind. I have a mortgage and credit cards, how are these going to get paid because I’m not working? How are Joanne and my girls going to cope?Getting angry with aphasia is a big thing. It’s one of these things that’s come along with stroke. The depression and the anxiety is just really bad. You can’t control it. I describe my depression as a black dog. When it’s at its best, it’s like a wee puppy just sitting in the corner. At its worst, it’s a big, straddling dog where nothing can get in because this dog is there snapping and bitingTom, stroke survivor
Rehabilitation through art therapy
Following his stroke, Tom began to take part in art therapy as part of his rehabilitation. He found that art became a way for him to express his emotions when he could not speak or explain his feelings out loud.
Tom said: "At the beginning, my pictures were all dark colours. They were dark, gloomy pictures because that's where I thought I was. Everything was a deep well you have to get out of. Over time, it lightened up and changed.
"I still paint now – Joanne reckons I have over 150 pictures! It's helped with rehab for my right hand and arm – using my hands and holding paintbrushes helped me to start writing again. Colouring books helped me too."
Volunteering to help others
Tom is now determined to share his own experiences of stroke to help others. He is a dedicated volunteer with the Stroke Association. He runs a stroke club at his local community centre in Edinburgh, and he is a Community Connector – volunteering in the community to raise awareness of stroke, aphasia, and stroke support.I've done a few speeches at events for the Stroke Association. When I'm speaking, because I've got my notes, my aphasia tends to disappear and I can start talking normally. But when I realise I'm talking normally, it kicks back in.Tom, stroke survivor
"Before my stroke I certainly wouldn't have got up and spoken in front of 150-200 people.
"I'm not going to say my stroke has been good for me, but it's given me a lot. I've seen my girls grow up. We [me and my family] celebrate my stroke day. We have a drink and we go out for a meal. We started it because it's a new life for me now. I really don't know what I'd do without my family."
Raising awareness of aphasia
Now, Tom wants to help more members of the public to understand how they can adapt their behaviour to support people with aphasia.
Tom said: "Stroke affects your mind, body and soul. When people are impatient or rude, it makes me feel embarrassed. It makes you feel like you don't want to go out on your own.
"People can't see what's wrong with me because with stroke it's all inside. People need to slow down so I can hear the words and take their time and listen to what I'm saying.
"If we can make people aware of that to help those with aphasia that would be good."
About Tom’s art exhibition
Art Speaks for Me was Tom's first art exhibition. He had never displayed his work publically before.
Art therapy helped Tom to rebuild his life after stroke. He has been able to express his emotions with art when he could not speak.
Most of the paintings in Art Speaks for Me were his expression of his feelings during his rehabilitation process.
Tom hoped that by sharing his artwork publically, he would be able to help others to understand the impact of stroke and aphasia.
Tom produced a new painting especially for this exhibition. The new painting expresses how he feels about his aphasia.
Tom's journey to prepare and launch his exhibition is charted by a UK documentary produced by Redwood Studios and the Stroke Association.
Tom said: "I was excited but also scared and apprehensive about taking part in this film. I wanted to show others with aphasia that they are not alone. It was like stepping out of the darkness.
"When I was back home after my art exhibition, I had an immense feeling of pride. It's been a long time since I've felt proud of myself. It was great to have praise from people who came to the exhibition who I didn't know. It was even better to have praise from my family. Seeing the look on their faces when they saw the pictures was just amazing.
"I'm hoping that from watching the documentary people learn that those with aphasia and not stupid. We are people with a communication problem, and that they just need to give us time and be patient with us."Instead of being ashamed of aphasia, I wanted to show people that even if you have got this speech and communication disorder it's not the end of the world, and you can use any means that you have to show you're still a person behind it. Aphasia is part of my journey and living after stroke.Tom, stroke survivor
#LetsTalkAphasia
Our spring campaign "Let’s talk aphasia" aims to raise awareness of aphasia and its impact on stroke survivors, their families and friends. Watch our documentary film, featuring Tom, now: When the Words Away Went.
Further support
If you would like to talk to someone about the issues raised in Tom's story, you can call our Stroke Helpline on 0303 3033 100 or email helpline@stroke.org.uk.
Samaritans provide confidential, emotional support, 24 hours a day, 365 days a year. Call the Samaritans on 116 123, or email jo@samaritans.org.