When Helen Harris came round from brain surgery, she found she couldn’t even say her own name. She describes her slow recovery – and how to react to someone with the condition

I had never heard the word “aphasia” and didn’t know what it was until I came round from brain surgery and found that I was unable to speak. A nurse asked me to tell her my name. I couldn’t. She held up a pair of scissors and asked what they were called.

All I could do was shake my head. “But you can understand what I’m saying?” I nodded.

Aphasia is the full or partial loss of the ability to use or understand language; about 350,000 people in the UK have it. Most of those have had a stroke, but it can be caused by a brain tumour, a head injury, multiple sclerosis or other neurological conditions. Until last summer, I was an active, healthy, 43-year-old working mum. I had only been in hospital before for wisdom teeth and for having babies. Then, last June, I started having odd symptoms; my right hand became weak, and I sometimes had trouble speaking.

In August, I was referred to a neurologist and sent for an MRI scan. The neurologist phoned my husband, Nick, when we were nearly home. “Can you turn around and come back?” he said. I was terrified. I didn’t want to imagine what could be so serious that we needed to go right now. All I could think of was our two daughters. In the hospital, rain pouring down outside, the doctor told us that I had a large brain tumour, probably cancer. It doesn’t look brilliant, he said. We went home to do the heartbreaking job of telling our girls (then 15 and 13), and I went into the neurology ward that night.

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I had surgery 12 days later, on 1 September. The operation took six hours, then I was taken to the recovery room to wake up. And that was the start of my crash course in aphasia, and the fear, debility and anxiety it commonly brings. As I was wheeled back to the ward, my head was spinning. By the evening, I had recovered a few words: “please”, “thank you” and “sorry”. The words you say automatically are often the first ones to come back; sometimes people can swear or sing before they can say their name. Nick called the girls on FaceTime so they could see I was OK; I couldn’t say their names, but I could say our dog’s. They weren’t offended.

The surgeon came to see me. He told me my speech would probably come back in a day or two. If it wasn’t back by day three, it would probably take a few months. I didn’t ask what would happen if it didn’t. That night, I didn’t sleep at all. Weird things were happening to my senses. I could hear strange, repetitive music in my head, and when I closed my eyes, it was like looking through a greyscale kaleidoscope turning slowly round. I wanted to ask if all this was normal, but I couldn’t speak to do so.

The next afternoon, Nick brought our daughters in. I still couldn’t say their names and I was worried how they would feel about that, but as far as they were concerned I was still Mum, and they had no doubt that I would regain my speech. I showed them a text message I had sent to a group of my oldest friends, with a photo of my scarred, stapled and shaved head. The girls dissolved in giggles. I thought I had asked if the new hairdo suited me, in fact I had written: “You fits?” On the Sunday morning, I still couldn’t say my name or where I was. Other words started to come back – but not always the right ones. I told a nurse that I was 40, which was nearly right, and that Nick was 70 (instead of 46) and the girls were seven and five.

That day, Isabel, our younger daughter, presented me with a book she had made, with words such as “tea” and “coffee” and “help”, and a whole list of emotions and phrases, including “I love you”. The staff thought this was brilliant and Nick and I wept. That evening, I FaceTimed the girls and said: “I love you”. That was the first sentence I had spoken since the Friday morning.

I came home five days after the operation. I could say short, slow sentences. My voice was weak, halting and a bit robotic – I didn’t recognise it. In some ways, I didn’t recognise myself at all. I had been a journalist and press officer, someone who talked and wrote a lot, quickly. I loved sitting round a table chatting, and now I couldn’t. The tumour had weakened my right hand so that I couldn’t write clearly, and typing was tricky. Concentrating on anything, even a conversation, exhausted me.

While most people are patient and understanding, some are not

It is common for people with aphasia to feel depressed, isolated and anxious. For several months, I didn’t want to see anyone but my family and my closest, oldest friends. I felt humiliated by my speech, and how I felt it had changed my character. I was conscious that having a chat with me must have sometimes been painful for others, too. Sometimes, I got bored with waiting for me to get to the point.

Fortunately, by February – six months later – everything was beginning to get better, and is still steadily improving. My speech is still slower than normal, but my voice sounds like me. I frequently get “she” and “he” mixed up and often starts sentences and then hit a brick wall, because I can’t think of the words I need – simple words, such as “bring” and “take”. I can’t pronounce words with lots of consonants, such as “negligible” and “eligibility”. I can type and text at a decent speed but I have to read everything back carefully to be sure it makes sense. I can use the phone, but I can’t write at the same time. I can read but slowly and not for long, so I’m catching up on lots of poems and short stories.

While most people are patient and understanding, some are not. Aphasia does not affect intelligence but, because most people are not aware of the condition, they guess what is behind my slow, tangled speech and come up with the wrong answer. But I have decided I just have to get on with life and if a shop assistant has to wait while I fight to get the words out, so be it. If I can’t pronounce the word I want to use, I’ll find another. I suspect it will be a long time before I can say “negligible eligibility” but I will keep trying, if only to make my girls laugh.





If you know someone with aphasia ...





Do

Say when you don’t understand – it’s not a problem, you just need to try it again

Stick to one topic at a time and make sure you both know when you’ve moved on to a new one



Keep it simple – keep sentences short and ask one question at a time



Use whatever you can – point to things, make gestures, write, draw, hum or sing





Don’t

Finish sentences or guess what the other person is trying to say – it’s extremely frustrating. Just give them the time they need to get there themselves

Pretend to understand what they’ve told you – always check



Forget that you’re talking to an adult who has problems with their communication, not their intelligence



Rush – give time to understand and respond



Further information from the Stroke Association and Speakability, the national charity for aphasia: stroke.org.uk/what-stroke/what-aphasia

