It was over lunch with a colleague that Jonathan Hirons began to feel a bit strange. “I couldn’t quite catch what was going on,” he says, “and my words started to go.” Back in the office where he was having meetings, another colleague showed him a document Hirons had worked on and asked him to change something in it. “And I couldn’t.”
He doesn’t remember much of the rest of that day in London in January 2019. “I was just confused; I didn’t know what was going on,” he says. An ambulance was called and he was taken to University College hospital, where doctors suspected a stroke. A CT scan that afternoon, and an MRI the following day, confirmed a blood vessel had burst in his brain. “The bleed was quite short, which was lucky,” says Hirons. He wasn’t left with any physical problems, but he did have aphasia – a loss of language.
The experience has inspired the 72-year-old to make a documentary about the condition, sparking a new direction as a film-maker after years of working in business and project management. On the Tip of My Tongue is almost complete, with a rough cut about to be produced, and Hirons has found the process surprisingly satisfying. “Even the boring bits are enjoyable. So now I’m thinking: what can I do next?”
Hirons’ language has returned, with help. When we speak over Zoom, he doesn’t have any noticeable speech problems, except when he occasionally forgets a word, smiles and says he’ll remember it tomorrow. In hospital, though, he couldn’t speak at all beyond answering simply “yes” or “no” to doctors, and to his wife, who had come up from their home near Lyme Regis in Dorset. His speech started to recover within a few days – but while he could read in his head, he discovered he could not read aloud, the words getting jumbled as he tried to speak them. Numbers were, and still are, a problem. “I couldn’t work my phone,” he says.
Was it frightening? He ponders the question as if it has never occurred to him. Not frightening, exactly, he says, but “I was wondering: what’s going to happen?” He worried about the project he knew he wouldn’t be able to finish, then had the realization that he would probably never return to work.
Back home after five days in hospital, while waiting for an appointment with a speech therapist, he began to practice reading and speaking with the help of children’s flash cards his wife had bought. “She helped me get going,” he says. Once the formal therapy started, with exercises to recognize and read words, his language improved. It wasn’t like learning to read again; it was more that it started to come back gradually. “Certain things, I would say: ‘Oh yeah, I remember that.’”
After about five months, he was able to have a decent conversation, though “it probably took about a year to get really sorted out”. Now, he says: “I’m OK one to one, but in a crowd I still can’t keep up like before. I have to think about what’s being said, or what I have to say, and sometimes it doesn’t come out.” Some days his speech fails. “When I’m tired, that is the worst time and I get jumbled up, or I forget words.” On other days, it’s not a problem. “So it’s not even consistent.”
He can write fairly easily again, but reading aloud is still a struggle, as is giving a talk or presentation – something he used to enjoy. “It’s strange because in my head, I know what’s going on; it’s when it comes out that it goes wrong.”
He knows, though, that his aphasia could have been so much worse. For his film, he has interviewed two young people – one had a stroke, the other a head injury – who need support and struggle with language far more than he has done. At the support group in Exeter that he started going to, he met people who couldn’t speak, and those who were isolated by their condition. “I’m lucky that my wife’s very supportive, as are people around me, but some people go to this group, which is once a week, and the rest of the time they are on their own.” Unsurprisingly, he knows people who have suffered depression because of aphasia.
The idea for the film came out of the group. The woman who organized it, he says, “was telling me about how hard it is to get people to understand what the problem is, and therefore there’s no help. I thought: this is ridiculous – there are about 350,000 people who have this in [the UK], more than have Parkinson’s, yet there seems to be no kind of national association. I felt as if maybe the only thing I could do was to bring this to the forefront.”
His project management skills from his old job came in useful, but asked if he misses it, he says he isn’t someone who dwells on the past. “I tend to live in the moment. My take on it is that you get things thrown at you and you find how to do them better, do them differently.” He repeats that compared with some people who have aphasia, he hasn’t suffered immensely. “There is a grievance phase, I guess. That loss does stick with you for a while, and then I guess I got over it, and you live with what you’ve got.”