It took Michaela Heldon months to get her language back, but now she has it, she uses it carefully. She knows its limits and its riches, because she’s had to learn them back, word by painstaking word. “Frustration,” she says now, in the pleasant family room at Connect House in London, “isn’t a big enough word for what aphasia is.” A medical dictionary isn’t much use: Aphasia, it says, is the loss of language after a brain injury, such as one caused by a stroke or brain haemorrhage. But it’s so much more, too. “You wake up one morning,” says Harry Clarke, “and your world has turned upside down.” He’s not using a metaphor: On July 24, 1988, Harry woke up in bed, aged 35, and couldn’t move. “I tried to get out of bed and kept hitting the floor. I couldn’t understand it.” He dragged himself to the phone and dialled a friend’s number. “That’s a mystery now, as I found out later I couldn’t read. I opened my mouth, fully expecting to say “Chris, I can’t stand up,” and all I could say was “g….g….g.” After days of tests, the hospital consultant told him he’d had “a cerebral vascular accident.” “He said, ‘that means you’ve had a stroke.’ I couldn’t believe it! I didn’t think young people had strokes. I thought I must be the youngest person ever.”
Michaela smiles at this. She was 28 when she woke up in Liverpool hospital after 4 weeks in a coma. “I don’t know how I got to Liverpool – we lived in London. But I can accept that now, that I’ll never know.” Anecdotally, there are reports of more and more younger people getting strokes, probably through lifestyle factors (high blood pressure caused by a sedentary lifestyle, too much smoking or an overly salty diet). But Michaela had been living with the possibility of a stroke for 18 months, since doctors had discovered an arterial-vascular malformation in her brain. Seven months before an operation that would have cured the malformation, she had a massive brain haemorrhage. When she woke up, she couldn’t speak. She laughs now, at what must have been horrifying. “I was speaking and I thought I was talking normally. I didn’t realise for a while that I was just babbling. I got so pissed off that no-one could understand me. I thought they all had a speech disorder!” Harry, meanwhile, tells the tale of the tea: “I was really hungry. The nurse asked me if I wanted dinner and I wanted to say yes, and I could only say no! Then she asked me if I wanted a cup of tea and I couldn’t think of anything better, and I opened my mouth and “no!” came out. I couldn’t believe it.”
Aphasia is an invisible disability. It’s like being an amputee, say stroke experts, but you can’t see the cut. But it’s more than amputation. What it feels like to lose all your language, all your ability to communicate is, paradoxically, almost impossible to convey. The Stroke Association compares it to having a word on the tip of your tongue. About everything, all the time. In the new Stroke and Aphasia Handbook by Connect, the national association dealing with communication disability, they are succinct. “I can think clearly,” says one character in the book, “but I can’t get the messages in and out.”
Given the devastation it can wreak, a stroke might more usefully be called a shock. Both Michaela and Harry woke up to find they had lost more than just speech, or sensations down their right side (which is likely to be affected if the left side of the brain – controlling language and movement on the right side of the body – is damaged). Harry, now a trained counsellor, talks of his rehabilitation as a grieving process, because what is a stroke but enormous loss? “You lose your status. You lose your work, your role in the family.” You lose yourself, at least the person you were in the outside world, even if you feel the same inside. “Whenever I catch sight of myself,” says Jasvinder Khosa, who had a stroke when he was 31. “I still get a shock. I’m still surprised that I look like I do, that when people see me, they see a clawed right arm.”
Jasvinder was a deputy headteacher on holiday in the Lake District when his brain began bleeding. “I was talking about planning a walk, and I had problems with the word ‘when.’” A few minutes later, his right side went numb and he was vomiting violently. “I was,” he says, “alarmed.” The specialist said there was too much damage. He would never speak or walk again. So says Jasvinder, speaking over the phone from Sheffield, where he now lives, alone, walking and talking perfectly capably. “It’s not perfect,” he says. “I have problems linking two abstract concepts together. Things take more time to come out. It’s slower. I can’t read novels any more because I forget the plots.” But it’s good going, considering, and now he has a love of poetry instead (“fewer words. More rhythm, so easier to remember.”)
Like Michaela, Jasvinder woke up to find that he could only speak nonsense. The first words that came back to him were Punjabi, his mother tongue, though he grew up in Northern Ireland. But when his speech therapy happened, it was only in English. Now, he says, he speaks Punjabi like a Colonel Blimp character in the Raj films. “My mouth and tongue won’t form Punjabi any more. And it’s too late to learn.” His problems with Punjabi are rarer – there are bilingual aphasia sufferers, of course, but not the majority – but they are typical of aphasia’s effects. When you lose your language, you have to learn it back. You are a foreigner in your own language.
“I picked up a newspaper,” says Michaela, “and I could see the symbols. I knew they were letters, but I had no idea what it meant. It was as if it was in German.” Aphasia can mean losing your ability to read, speak, understand or a combination of all three. “The worse thing about a stroke,” says Harry Clarke, “is the loss of speech.” People with aphasia get called stupid. They are assumed to be deaf, or dumb, or thick. “I was home one day near the beginning,” says Michaela, “and I picked up the phone instinctively, forgetting I couldn’t speak. It was a woman from the bank. I could get numbers out and they seemed to make sense to me, but they were nonsense. I couldn’t even say, ‘I have aphasia.’” Even then, she might not have been understood. Though 130,000 people have strokes every year, including 1000 under 35-year-olds, and there is little statistical reason not to know what aphasia is, ignorance abounds. Even in people who should know better. “One woman I know took four years to be granted benefits,” says Carole Pound, Connect’s development manager, Every time she phoned, they told her she had to fill in a form. She told them she couldn’t read or write any more because she had aphasia and they said, ‘OK, we’ll send you a form.’ Unbelievable.”
Some people with aphasia never recover any speech. Most never go back to work. Jasvinder had a job as a classroom assistant, in an all-white inner city school in Bradford. “Kids are kids,” he says. “They’re impatient. I had to speed up my language, so it was good.” They told him he talked funny, he says, but he wasn’t bothered by it. Nor was he bothered when the parents called him a Paki. ‘I’m more sensitive now,” he says, ‘But I just don’t remember being bothered by it. All I remember thinking was that I was the only Asian role model in the school and what a role model I was! Disabled and talking funny!” Harry Clarke used to manage a rock band. They were signed to Polydor and everything. “I never thought ‘why me?’,” he says now with a smile. “Given my lifestyle, I thought, ‘why not me?!’” He’s happy now, counselling. Not that he’d recommend the frustration and fear a stroke brings, but all in all, things are alright. “How do I feel?” he says. “I thought I’d be the same as before, but actually I feel better than myself. It takes me longer to get the words out, but you’ll never hear me complain. I didn’t know it before, but speech is so important.” He grins, and says with pure pleasure, “words are fantastic!”
Published in the Independent on Sunday