"People think I'm rude when I swear but my words get mixed up" - living with aphasia after stroke

"When people are talking to you, it’s as though you have a huge dictionary in front of you and you’re urgently searching for the right words."

That's how Tom Middlemass describes his experience after recovering from two strokes. He has aphasia - also known as difficulty with language, such as talking, listening, reading and writing. It affects more than 350,000 people in the UK, and is most often caused by damage to the brain from a stroke.

The condition initially left the 60-year-old from Edinburgh unable to speak. With some help, he has been able to regain that ability and lead a full life again - but he continues to face challenges, including mixing up his words and unintentional swearing.

The stroke that came out of nowhere

Tom’s first stroke happened when he was working as a breakfast chef. It was a busy Saturday morning in the kitchen and the first Tom knew of it was when he came round and found he was lying on the floor.

“I was kind of conscious and unconscious at the same time,” he explains.

“My bosses had come to check on me and were asking questions. I thought I was replying to them but they couldn’t understand a word I was saying.

“They quickly phoned for an ambulance and I was in hospital for five days. A stroke nurse came to see me and I got a place in a stroke rehab centre and I was there for nearly a year. She helped me get back to work.

"Then one day after I’d got home from work, I collapsed and had a second stroke.”

Living with aphasia

Tom started to experience aphasia after his first stroke, but found it really became problematic after his second.

“I had to learn to talk again and to find words. It’s the thing, in the most part, that’s been the hardest. When people are talking to you, it’s as though you have a huge dictionary in front of you and you’re urgently searching for the right words to what they’re asking you. It’s quite hard to think and at times, you do find the wrong words.”

His experience is very common with people that are living with the condition after having a stroke, explains Caitlin Longman, accessibility lead at the Stroke Association.

“Many people with aphasia will have to learn to talk again.” 

“They might also need to relearn to read, write, and relearn how to plan their day, so they aren’t so fatigued, as this can further impact on their communication. The processing and recalling of numbers as well as words can also become more complicated.”

Mixing up his words

Sometimes swear words can pop out when Tom doesn’t mean to use them in a sentence and this can be a source of embarrassment for him. People can get the wrong impression that he’s rude when he’s simply trying to engage in a conversation.

“If that word sounds like what you want to say, the “f” word can come out, or sometimes the “b” or “c” word can come out too,” he says.

“All you can do is apologise for it and hope that that’s it. If someone takes offence to it, that can be really tough for me.

“We call it stroke Tourette’s as it’s easier to mention it that way, as it helps people to understand that you have this condition.”

One of the problems he has encountered is that different people can react very differently to his condition.

“I might have a brain injury but I can still understand what people say,” Tom explains.

“I try to reply as best as I can but when I’m talking to some people, you can see their faces change when I start speaking.

"Then you have those that shout at you, not realising that they’ve raised their voice. There’s also some that think I’m stupid because I have problems communicating.”

Swearing isn’t always accidental

Longman explains that using swear words is very common with aphasia, as this is due to where information is stored in the brain. Swearing is “automatic speech” and comes under the same category as saying hello or singing along to Happy Birthday.

“You might have someone with aphasia who has very little vocabulary, but if you started singing Happy Birthday, they would be able to join in,” she says.

“Swearing is just one of those things. When I was working clinically, I would often tell families that swearing isn’t intentional. It’s just something that comes out. At the end of the day, is a swear word the worst thing you could hear? I don’t think so. Being able to get your message across is most important.”

People will also choose to use a swear word at times on purpose, she adds.

“This is often due to the intense frustration around not being able to get their words out, or people not giving them time to speak or speaking for them. Sometimes, it can be intentional.”

Overcoming other challenges

After his second stroke, Tom found understanding money was difficult. He went out shopping on his own one day and thought he had spent £15 on vinyl in a record shop. His wife, Joanne, later noticed on their bank statement that he’d actually spent £50.

This has improved now but he says not understanding money at the beginning was hard. He’s also noticed sales assistants are becoming more helpful, as their awareness of aphasia is improving. He hasn’t always had a positive experience, though.

“I went into a well-known coffee shop one time and when they asked what I wanted, it took a while for the words to come out. I also always get my cappuccinos and lattes mixed up so this didn’t help.

"But I was stunned when I was asked to stand out of the way because she had a big queue. I ended up leaving the shop, even though one of the ladies in the queue had offered to order my coffee for me. It was just one of those days where my condition got the better of me.”

What’s helped with letting others know about his condition is carrying a communication card (available for free from the Stroke Association's online shop). This tells people that he’s had a stroke and has trouble talking and thinking.

“When I show people my card, it does help,” he adds.

How aphasia affects quality of life

Understandably, quality of life is impacted when you’re living with aphasia. Longman says it not only affects your ability to communicate, it can also alter social relationships with family and friends. And it can affect everyday hobbies and how you engage with the world around you.

For Tom, he avoids certain social situations. Particularly if he doesn’t know the people who would be going out with him. He also finds loud noises can be very difficult.

“When I’m at a disco and it’s quite noisy, I can find that overwhelming,” he says.

“When I go to parties or nights out, I tend to see how long I can last.” He enjoys going to watch Hibernian and Hearts football matches with his young daughters.

Tom is a Celtic supporter, however, but hides his allegiance if his team comes up against the two that his daughters support. He also watches ice hockey matches with Joanne and they can get very loud in the arenas. Tom says he has learned ways to cope with the noise but still finds it uncomfortable.

Discovering new talents

Since his stroke, Tom has discovered a love of art – something he had no interest in previously. When Tom is asked what he enjoys about his new hobby, the happiness shines through in his voice.

“What I enjoy about painting is it makes me disappear.

"It takes me away to places where I’ve been and it gives me a little freedom, as I paint a lot of trees and flowers. I can just picture lying in the long grass.

"It’s a real escape for me. Painting has been really helpful during my stroke recovery.”

There’s been some interest in his art and this has come as a surprise to Tom. In April, he held a one-day exhibition in Edinburgh to showcase his art and talk about how painting has been beneficial in his recovery.

His story and work also features in the Stroke Association’s latest documentary, When the Words Away Went. It was quite a revelation to him when one lady wanted to buy some of his work and asked how much it would cost.

“I didn’t know what to say so suggested she should have a chat with Joanne,” he says, chuckling. He showcased 32 pieces of his work that day and sold 16. He’s planning on doing another exhibition this summer.

How to communicate well with someone that has aphasia

One of the biggest challenges for people affected by aphasia is that many people don't know enough about it or how they can help. Better awareness of the condition can make all the difference. When Tom is asked what advice he would have for others, he starts with what is unhelpful.

“If you’re going to talk to me, listen to me. A lot of people try to finish your sentence but nine times out of ten, it’s the wrong thing, and it means my brain has to try and find the word I did want to say and that can be difficult. Most importantly, just be patient and don’t butt in.”

The Stroke Association also advises practicing the 'Ask, Wait, Listen' approach, as per its aphasia etiquette tips.