Terry Prone: Aphasia is debilitating, disabling, and leaves me questioning myself

To become non-verbal after a life rooted in words is a sentence without mercy or parole
Terry Prone: Aphasia is debilitating, disabling, and leaves me questioning myself

Bruce Willis as Frank Minna in 'Motherless Brooklyn'. Picture: PA Photo/Warner Bros. Entertainment Inc./Glen Wilson

A biographer of Katharine Hepburn once pointed to the way old age genericises everybody. The rich and famous are not spared.

The example he gave was of Hepburn in her old age, mortified to be caught by an unexpected visitor when the former star was eating dinner off a tray table in front of the TV. This is the way the world ends — not with a bang, but with a tray table, a helper, and a TV programme.

Bruce Willis’ aphasia is at the acute end of that diminution. The statement announcing his condition wasn’t made by him. That’s the awful thing. It was made by his family, which indicates that his aphasia has already passed the point of independent communication.

Bruce Willis is to step back from his acting career after recently been diagnosed with aphasia. 
Bruce Willis is to step back from his acting career after recently been diagnosed with aphasia. 

Even mild aphasia, as can happen after a blow to the head, is disabling. A neurologist, diagnosing me as a sufferer following a car crash, waved it away, telling me that a smart woman like me would find a way to cope. I did. I would call my husband. I would ask him to play a CD by Diminished Fifth and he would stand still, eyes narrowed, before making a guess: Dire Straits?

When I was unable to tell him what was wrong with a Christmas tree he had presented for consideration, he would go through the options. Too tall? Too thin? Too patchy? It didn’t matter how long it took. It was his job, as he saw it, the performance of that job shorn of virtue or the requirement for patience. It was just the thing that had to be done at that particular time. 

I was lucky. Lucky, too, in that my aphasia is mild and so far, has not progressed.

Aphasia never disappears. So you can find yourself sitting in front of your only sister, knowing who she is but not what she is called, mentally trying random names on her — Linda? Sarah? You may get lucky if your sister happens to have a popular name, but if she’s a Hilary or an Anastasia, your chances of nailing either by mental name-scrolling are small.

It’s the same in meetings with people you have known for as long as 10 years. On a bad aphasia day, you can look at the one you arguably know best and have not a clue as to how to address her, knowing that it’s going to be weird if you start describing her as “my friend on the left” or “the technical expert on the right”. 

You can play around with a monosyllabic name such as Anne in the hope that if you get it wrong, listeners will interpret it as a sign or a verbal filler, but you’re goosed with a multi-syllabic name. Applying “Francesca” to an Una is not going to cut it. 

Training programmes purporting to help don’t, because no matter what system is applied to missing words or names, the mental effort taken up by that system means you can’t pay proper attention to what’s going on around you in real time.

Even mild aphasia offers a grim insight into what Bruce Willis has suffered during the past couple of years. There can be no doubt that suffering has been acute. It’s a mystery why he kept working on B-movies necessitating the use of an earpiece to feed him the lines he could not recall. 

Bruce Willis as Frank and Lydia Hull as Jan in 'Survive The Night'. Picture: PA Photo/Lionsgate Films/Brian Douglas
Bruce Willis as Frank and Lydia Hull as Jan in 'Survive The Night'. Picture: PA Photo/Lionsgate Films/Brian Douglas

Perhaps it allowed the illusion of continuance. Perhaps his growing dementia may have eroded his actor’s capacity to pick up unspoken verbal clues from those around him on set; the blinks and hesitations denoting that others found something in him was not right.

In the beginning of progressive aphasia, sufferers may depend on a family member or friend to interpret the world around them. This works until the sufferer retreats into silence with a mind tangled with unspoken thoughts, like wire wool. 

If the interpreter makes even the most subtle patronising aren’t-I-so-patient deal of it, the speaker will identify that and rage, rage against the dying of their control. 

Because that’s what it is. Never mind being surrounded by love and service, the reality of encroaching dementia is the bell tolling for autonomy, agency, and control, with the double horror of knowing what’s coming. 

In the beginning was the word, and when the word no longer works, impotence fills the vacuum.

When John and Robert Kennedy’s father had a stroke that rendered him speechless, his wife, Rose, took to travelling the world, pausing only to visit him just before departure on each trip to tell him, with some pleasure, precisely where she was going without him. 

This reduced him to boiling fury, but without words, his rage could never find expression, which makes her cruelty — frilled and scented as it was with sanctimony — all the worse. Joe Kennedy, the cowardly, unfaithful bully who had dominated their married life was now utterly powerless and she didn’t hesitate to prove it to him.

She was exceptional. For the most part, when partners are silenced by accident or illness, women come through with strength and generosity. 

When Dean Martin was dying a sodden death, his divorced wife moved back in with him and nursed him. Sarah Miles had been notably unfaithful to writer Robert Bolt before their divorce, but when he later had a stroke, they remarried and she took exemplary care of him until his death.

Bruce Willis has a wife, an ex-wife, and several daughters who love him and will care for him, constantly trying to remember him as he was, before this deadly disability struck. 

US singer Tina Turner and actor Bruce Willis sing together during a rehearsal at Bercy stadium in Paris, on May 3, 1996. Willis and his group The Accelerators are the opening act for Turner's Wildest Dreams world tour. Picture: Michel Euler/AP
US singer Tina Turner and actor Bruce Willis sing together during a rehearsal at Bercy stadium in Paris, on May 3, 1996. Willis and his group The Accelerators are the opening act for Turner's Wildest Dreams world tour. Picture: Michel Euler/AP

It will be tough for them and for him, because, without the ability to communicate, we are in charge of nothing. No concept can take shape in our heads without the capacity to frame it in a sentence. No expressed verbal kindness can reach a dementia-destroyed brain.

We have grown used to the phrase “non-verbal”. To become non-verbal after a life rooted in words is a sentence without mercy or parole. 

We select and seduce using words. We comfort and celebrate, likewise. We prove valour and defiance. We demand and defend. We use words to distinguish and to judge: As in the biblical story when a victorious army guarding a river demanded anybody wishing to pass must say “Shibboleth”, knowing that men of the defeated army could not pronounce the “SH’ sound, and slaughtering, one by one, the unfortunates who mispronounced it.

Even in the face of sudden, brutal death, words matter. 

After his leader, Napoleon, was defeated at the Battle of Waterloo, France’s Marshal Ney was condemned to death for treason by the royalists he had betrayed to follow his former emperor. In front of the firing squad, he refused to wear the traditional blindfold.

More importantly, he insisted on calling out the order to fire. That one word — shouted and obeyed — showed a man in command.

One word expressed his pride, his past, his position, and his persona. One word.

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