It was several months after my stroke before I first heard the term “aphasia,” and I rejected it as a science-speak for “I have trouble speaking because I’ve had a stroke.” Other people too find it a £10 word when a simple “penny” explanation is needed.
In my previous incarnation as a journalist/PR, you learn to say it simple so that you can communicate with the most people. The card I was given by The Stroke Association to show people why I speak funny,
(see, they did do something for me!) in fact doesn’t even mention aphasia. You aren’t going to educate the entire population by teaching them the scientific name for your affliction – most people don’t say: I’ve got singultus when they mean hiccups; don’t say carcinoma for cancer; myocardial infarction for heart attack.
I can’t remember the first time I heard “aphasia” – probably it was thrown into conversations (one-way) by some doctor explaining what I had, and it was immediately thrown out by my mind as a £10 word. It didn’t mean anything to me. I first referred to it as sounding like a character from a CS Lewis novel The Chronicles of Narnia.
Then I met Catherine, my speech therapist, and I don’t remember her bringing the word to my distorted conversations.
The first time aphasia reared its ugly head was in a meeting several of us stroke survivors were invited to by a regional health authority who wanted our input to their new and improved Stroke Handbook for people who just had a stroke and their carers. I gave them the best advice I could – stay away from using aphasia on first reference, and call it what it really is.
Speaking in my drawn-out, crossword fuelled vocabulary, but brain damaged way, I took too long. I remember being extremely agitated the rest of the meeting trying to say more and not being able to get a word in edge wise. But then you would expect them to know that. Even the Stroke Association card I carry says: “I find it difficult to speak and your patience would be appreciated.”
I wasn’t fighting learning a new word – I’ve spent most of my life collecting them as a writer. I was standing up for clarity and communication – aphasia doesn’t convey what’s happened to your mind and speech (unless you’re in a room full of doctors, and how many times can that happen).
Let’s look at the word aphasia. It comes from the Greek for “not speak,” a + phanis, or aphatos, speechless, and means “inability (or impaired ability) to understand or produce speech, as a result of brain damage.” (Oxford English Dictionary)
Aphasia is a difficulty in understanding and using spoken or written language. It is, if effect, an absence of language. While it is more serious than dysphasia the two terms are often used interchangeably. Aphasia is not a disease but a symptom of brain damage. What kind of brain damage? Let us count the ways.
Broca’s aphasia is effortful, distorted speech and difficulty forming grammatical sentences, but relatively normal comprehension and it’s the kind I have.
Then, there’s Wernicke’s aphasia where the person is fluent and well-articulated but it all comes out as meaningless speech with poor comprehension.
Agnosia is the ability to recognise objects using the senses even though the senses remain undamaged. The term is derived from the Greek meaning ‘lack of knowledge’.
Agraphia is the inability to write properly.
Alexia is an acquired impairment in the ability to comprehend written words. The disorder is often quite specific in that sufferers do not have impairment of vision and can identify spoken words normally.
Anomia is the inability to name objects
Aphemia is the loss of the power of speaking, while retaining the power of writing.
Aphonia is the inability to naturally produce speech sounds that require the use of the larynx that is not due to a lesion in the central nervous system.
Apoplexy is a sudden loss of consciousness resulting when the rupture or occlusion of a blood vessel leads to oxygen lack in the brain. It is generally used interchangeably with terms stroke, cerebrovascular accident and brain attack.
Apraxia (or dyspraxia) is a motor planning disability It is the inability to do complex tasks when requested even though there is no paralysis of the muscles. It may affect almost any voluntary movements, including those for proper eye gaze, walking, speaking or writing.
Perseveration: continued repetition of a word or phrase. I sometimes have this as well.
Anomic – difficulty naming objects. I sometimes have this too.
I could go on through the Greek dictionary, listing every known -xia. No wonder I call a stroke a designer disease – it’s bespoke, made just for you. It just depends on which way the blood doesn’t flow.
Aphasia is a loss of language, not intellect, which is why I’m more accepting of the word aphasia.
But still I tell people I’ve just met: “I have trouble speaking because I’ve had a stroke.”