‘My Words Are Like an Uncontrollable Dog’: On Life With Nonfluent Aphasia

Faye’s severe stroke arrived in her early 20s, and now, two decades later, she can look back at the experience and at its residual effects. She was 21 and an assistant manager in a bank when one morning she developed double vision. She thought it was a migraine, so her boss suggested she go home. Her sister worked opposite and agreed to pick her up. Faye then waited outside from eleven till five to be taken home and thought nothing of it. Logic was beginning to leave her.

Once home, her speech annoyed her partner. “For goodness’ sake just talk properly.” It was when her walking was affected that he took her immediately to their general practitioner. He dismissed it as a bad headache. They went home and she had a bath and went to bed, though by now with tunnel vision and pins and needles down one side. She still thought it was a severe migraine.

In the morning, she woke without speech. “Stupidly,” her partner just got ready for work and remembers her waving goodbye from a window. Then, thinking again and realizing something was seriously wrong, he phoned her sister, and she and their mother went round.

Despite being unable to speak, Faye did not recognize this:

I was thinking away in my own head albeit illogically. I got out of bed and waved goodbye to my partner. I remember everything, walking into bathroom wobbly, and going to the loo and then standing up and knocking all the pictures off the wall. There was no thought in my head that this was not right. I saw it all but did not question it.

There was a knock at the door and as she opened it she collapsed onto the floor, totally naked. Her sister dialed for an ambulance and when it arrived the paramedics presumed she’d taken drugs. Faye remembers being both embarrassed and angry. Not once, though, did she feel ill; even in the ambulance she remembers just thinking she’d never been in an ambulance with blue lights before. In the emergency department she was in one cubicle and her mum — who’d fainted — was in the next.

In intensive care it took some time to establish she’d had a widespread stroke affecting several areas, leading to eye gaze problems, pins and needles and paralysis down the left side, loss of speech and swallow, and difficulty with handwriting and calculation. No clear cause was established, though her use of oral contraceptives and her smoking were thought relevant. She remembers little of the next days. Doctors inserted a tube into her stomach through the abdomen. Without speech or swallow and with a dense paralysis down her left side, everyone thought she was in for the long haul.

The bewilderment of an acute stroke was captured by the playwright Arthur Kopit:

The moment of a stroke, even a relatively minor one, and its immediate aftermath, are an experience in chaos. Nothing at all makes sense. Nothing except perhaps this overwhelming disorientation will be remembered by the victim. The stroke usually happens suddenly. It is a catastrophe . . . the “victim” cannot process. Her familiar world has been rearranged. The puzzle is in pieces. All at once, and with no time to prepare, she has been picked up and dropped into another realm.

An explosion quite literally is occurring in her brain, or rather a series of explosions: the victim’s mind, her sense of time and place, her sense of self, all are being shattered if not annihilated.

Faye remembers little of the next weeks. A diary she started with her care team begins two weeks later and is full of reports from physiotherapists, mentioning how she transferred from bed to chair with help and using her left hand a little. With no words she used an alphabet chart, pointing to each letter. “It was so annoying because I could not spell. My family asked what I had been doing and I tapped out THISIO . . . THISIO (physio). They had no idea.” On the reverse of the alphabet chart her sister put lots of swear words. Faye also had a bit of a crush on her neurologist so her sister put loads of stuff about him too.

Three weeks after her stroke she managed to tap out her Golden Goals:

• Move thumb upward
• Go to loo on own
• Talk (a lot)
• To be able to walk home
• To drink water, followed by lager
• To eat food, particularly pizza
• To move my left side as well as my right
• To be able to write
• To able to brush the hair on the back of my head
• To be able to kiss and cuddle with my partner and blow him kisses.

“To be able, to be able . . .” Soon she was transferred to a stroke unit and then to rehabilitation, each move closer to normality. The diary mentions her first bath, applying deodorant herself, washing herself, wheelchair skills, bum wiggling on the floor, then standing and moving her thumb. She was given a Lightwriter, paid for by the bank, which enabled her to tap out her words, which were then spoken in an American accent, which amused her. But what Faye remembers most is an older woman doing her hair and nails. It was her babbling away as she did them, talking to her, which helped Faye more than she’ll even know. She was wheeled outside to see the birds. The ward staff loved her since unlike most of the other patients she was young and bright.

She also surprised them with her rate of recovery. After four weeks she was standing independently, while at five weeks she began handwriting and eating “mashed potatoes, carrots and sprouts. I even had a cup of tea.” The diary details her tying shoelaces, doing her own hair, standing independently, writing, using her left hand — each advance hard-won with huge effort and concentration. After one session the diary entry from the physiotherapist read: “Afterward, Vicki, Faye and I had a little cry.” She relearned to put her whole foot down, stabilize her hip, and not let the knee buckle. By concentrating on its individual components Faye relearned to walk. By six or seven weeks she spoke, clearly, though initially with a foreign accent. “I sounded like Steffi Graf.”

By eight weeks she rode a bike, “so dangerously, with a physio running behind me I nearly killed us both.” By nine weeks she went shopping. Bus trips, walks out, and cooking followed. After 10 weeks, once the percutaneous endoscopic gastrostomy tube, which had allowed them to introduce nutrients to her stomach when she was unable to eat, was out she was home, with a host of touching goodbye notes from nurses, occupational therapists, physiotherapists, and other patients: “remarkable determination,” “admiration for your courage,” “inspirational.”

A couple of months later she returned to the bank, though she was only allowed to do the more mundane jobs. She opened the post each morning, which she had always liked. For some reason when she opened a complaint to the bank she decided to reply herself, handwritten with appalling spelling. The person complained again and it cost the bank a lot of money and some flowers.

After that, she proudly announced she had a new job as an air hostess and threw a massive leaving party. The new job was a fantasy, so she was unemployed for six months. She decided to go to university and started in environmental science but could not do the chemistry involved, due to her newly acquired problem with mathematics, so changed to archaeology where she obtained a good second-class bachelor of science degree. After that, she became a supervisor in a supermarket and along the way had a child. When her daughter was six months old she saw an ad for a communications support officer for stroke services at the hospital and has been doing that job ever since, a decade or so later.

Initially it was tough. Her peers had a background in speech and language therapy, nursing, or social service, while her qualifications were that she had had a stroke and recovered. She joined a community team trying to improve communication skills in those still having difficulties several years after their stroke. She was told to go ahead and make the job her own. Fourteen years later, she is still making it her own, embedded in a community speech therapy team trying to help those with long-term communication problems who otherwise might have slipped through the social service net (which has increasingly large holes).

Having been completely aphasic, 20 years later she is in a unique position to reflect on her own experience without and with speech. When she was aphasic, she never lost her capacity for thought. Perhaps surprisingly, she found this a period of relative peace despite having a dense left-sided paralysis and being unable to swallow, talk, write, or walk. While she tried to make sense of everything, tapping out a few words on her laptop was enough even with poor spelling:

Having no language was relatively secure. Starting to speak was when the frustration came. I still feel that now, even though no one knows. I didn’t mind when I was German [the foreign accent], but when my vocal tone etc. normalized, I was still left with a difference between my thinking and my speaking voice. Before the stroke these were similar; afterward, my thinking voice was the same but my speech is lower tone, slower, boring, with less vibrancy or color.

Even now, though she is competent in speech, these are still present. One problem is in being succinct. Faye speaks faster than she thinks and then tries to backtrack and fails. What she wanted to be two sentences might become a long monologue in which she may not even say what she wants to say:

I fill the airspace, it’s a confidence thing. You have to be very confident to be silent. When asked a question the spotlight is on you. Often then people will fill the space with fillers in speech or just start talking and won’t be what they want to say, but the spotlight is on them and their mouths are moving. I waffle and if every utterance was written down it would be very long, if just the words were written it would be far shorter.

I suggested she is on autopilot. “Yes, perfect. Social autopilot.” Like most people, she presumes, she does not always think through everything she says. She finds the problem is not always in speaking, but matching words to thoughts:

I think it’s like going into a shop for a pint of milk, a loaf of bread, and butter. You go in and get a magazine, flowers, pint of milk, and forget the other two things. Why couldn’t I remember those two things? Or going into the shop and not knowing where the milk is, even though you have a vision of it. But once in the shop you forget what the milk looks like but you might remember how much it costs and it’s in the fridge and you go outside and remember — and then the shops shut.

Her thoughts and words slalom around like skiers, slipping and sliding across the slopes:

I often speak faster than I am thinking. Bizarre. And then I try to backtrack and go back and I cannot. And what I wanted to be two sentences becomes a 15-minute waffle. My words and thoughts don’t always match. My thoughts race along like a river. When I open my mouth, I am bracing for impact. . . . My words are like an uncontrollable dog.

It is in part a bandwidth problem. Listening to another person, thinking of an appropriate response, and then articulating it in real time without an appearance of effort or over-thought is arduous. She works hard to conceal that. She is also frustrated sometimes by saying the wrong thing or sometimes not having the words at all:

I probably now express more things I am not thinking. I say something but even as I am speaking, I think I am not thinking that. I do it regularly. Whether it’s getting the word wrong, or the whole thing.

At a recent conference a man was discussing the importance of psychological and peer support and how it was really important after stroke. Faye was really irritated because that is her passion too. She criticized him even though she did not mean to:

“Why did I say that?” How many times do you think things and are glad you don’t say them; sometimes my thoughts and voice go way too fast for any internal “autocorrect” to work. There is always the fear of falling foul—hence my feeling restricted career-wise.

She still goes off on tangents. While listening, thinking, and replying are effortful, dialing up the right response can be difficult too.

After one of our chats she sent me a diagram. Our chat had made her question herself again:

I have been giving a lot of thought to our discussions and wondering why, although communication now is wonderful in comparison to 1998, I feel so frustrated so often. I have done a hand-drawn diagram that might help explain those difficulties over time.

I also think that I have a constant critique in my mind now that wouldn’t have been there prior to stroke. Those constant thought processes; some of my errors, maybe a lot are normal human communication, pauses, getting words muddled occasionally; something the average person would not think twice about.

The figure was Faye’s three-dimensional diagram into the mind of someone with aphasia.

My diagram, “Thought to talk,” has two axes and three levels: what I think, what I want to say, and what I actually say. Horizontally, there is 1998, 2000, and 2022. Initially, thinking was a middle-sized circle, what I wanted to say was far smaller, and what I actually said was minimal. The square represents my frustration. Initially, my thoughts were unaffected; I wanted to say little and could say even less; hence the frustration.

Two years later my thoughts were unaffected, but I wanted to say more. But still I was able to say very little. However, my frustration was minimal; I had a “more relaxed balance of thought to talk.” Twenty years later I have lots more thoughts in my head, “more ideas over time.” What I want to say is similar to 2002, but now for the first time, I say a lot and more than previously. But with this there is an increased level of frustration, a combination of things I didn’t want to say, wrong words and going off on a tangent, and things I wasn’t thinking.

When she reflects, though, it is not all bad:

I do feel blessed because I had a time of self-reflection and a slowing down of life, which many may not have till they are older and which I had at 21. But then I had no choice and I would not have chosen it, but I did have a time when I could stop and feel free. If I had not had the stroke, I have no idea what I would have done. I might have been a banker all my life.

But she also kept returning to what she called her “micro-failures,” times when she said the wrong thing, when the “dog” ran off. At other times, the way she projected herself was not how she felt, in gesture as well as in speech:

When tired I have hypersensitivity to sound. Trying to remember what you are going to say and processing what someone is saying to you is hard. This is me right now, 20 years later, and still it is the case. Others look and say, “You’ve recovered,” and I think, What do they know? How do they judge? We are having to think about how we are seen by others much more than we are, all the time.

She reminded me that maybe 60 percent of people with communication problems after a stroke have depression, and though the speech and language therapists and psychologists do their best, there is insufficient support for this and other longer-term problems. Many marriages fail for this reason. She thinks that people do not realize how much even low-level support might be needed and for how long. A colleague recognizes, for instance, when Faye is tired, because her body language and speech falter. Others have no idea of the battle she lives with daily, between thinking and saying:

In the last couple of weeks I met a new social group, and I am vibrant, confident, talk hind legs off a donkey, but when we are talking and my memory is jogged and I want to tell a story and it is totally not what is in my head. It comes out and they get the gist, but I go off on a tangent, but my thoughts don’t. I tell the story but not how I wanted. People see me as being fun and ebullient, but that’s not what I am always.

Every day I am a different person. All processes are thought about, none are automatic. Even walking for me — I have a physiotherapist inside my head saying heel toe, lift your leg, and don’t drag your butt. You need balls of steel to carry on when you have missed your point; why did you forget that, why did that funny conversation did not go to plan? But never mind, it was still okay. Another failure, for a number of different reasons, forget what I was going to say, couldn’t find word. So many factors in communication.

Where is the line drawn when the words coming out of my mouth are not what I am thinking? I was aphasic. Am I still?

She would not have chosen this path, but it has made her question more, work harder, and — arguably — relish life more deeply. Almost unimaginably, she has been without language and then returned to tell what it was like, what it is like still. Despite her continuing problems, she has salvaged her speech and her life and moved from a bank to healthcare. Others are less fortunate and recover less.

Jonathan Cole is a consultant in Clinical Neurophysiology at University Hospitals, Dorset, and Professor at Bournemouth University. He is the author of numerous books, most recently “Chekhov’s Sakhalin Journey” and “Hard Talk,” from which this article is excerpted.