Lost for words – understanding aphasia

But what if this moment was magnified? This fleeting frustration now pervades your every interaction, muddling your thoughts and tangling your tongue. For every word there is only gibberish. Or, even worse, nothing at all. Trapped in a silence not of your choosing.

Most of us will find it difficult to imagine such a profound inability to take part in one of the most basic aspects of the human experience – communicating through language. Yet, this is the reality for millions of people living with aphasia. According to the National Aphasia Association (NAA) of the US, as many as four million Americans may be living with this reality.

Aphasia was recently thrust into the spotlight following Bruce Willis’s diagnosis, which has since been updated to frontal lobe dementia. However, according to a recent survey by the NAA, even after the awareness raised by Willis’s diagnosis, just under 9% of Americans knew what aphasia was. In South Africa, there isn’t yet enough reliable research on the prevalence of this disorder in our country. These gaps in knowledge and understanding underscore the importance of spreading awareness about aphasia. 

Aphasia strikes home 

At first I was largely unaware of this disorder. Willis’s diagnosis seemed remote, an unfortunate event happening in a distant world of celebrity. Despite the wave of information in the media, it held no immediate significance for me.

But then, the stark reality of aphasia struck much closer to home.

Sitting with my uncle, an engaging man who once effortlessly played melodies on his guitar, I asked him to recall the name of the tune that he used to strum. Remember, I urged, the one with “writing your name on the dotted line”? A spark of recognition flashed in his eyes, confirming that he knew exactly what melody I was talking about. But when he tried to articulate the name of the song, his words formed a tangled web of meaningless sounds. His subsequent attempts resulted in similar white noise. In an attempt to circumvent the blockade he reached for his phone. He tried to type the name on his phone, but written language seemed as far from his reach as spoken language. The desperation in his eyes was heartbreaking as he tried, and failed, to communicate.

People with aphasia may have trouble communicating or understanding what others are trying to communicate. They may also struggle with reading, writing and using numbers. It is crucial to understand that aphasia does not affect intelligence, but rather the ability to communicate, which can make it especially difficult to manage.

What is aphasia?

At its core, aphasia is a neurological communication disorder resulting from damage to the language-processing areas of the brain. This damage can be caused by various events, such as a stroke, head injury, a brain tumour or neurodegenerative disorders such as Alzheimer’s disease.

Aphasia can be divided into two broad categories, namely fluent and non-fluent, each with various subtypes. Fluent aphasia, despite its name, causes the person’s speech to lack meaning even though it may sound grammatically correct. 

There are three main types of fluent aphasia. Wernicke’s aphasia, the most common type, occurs as a result of damage to the brain’s temporal lobe, making it difficult for a person to connect words to their meaning or to understand speech. A person with this type of aphasia may be capable of formulating long, fluent-sounding sentences; however, these sentences lack meaning. Often, a person may add unnecessary words or make up words.

Conduction aphasia is where a person can understand words and speak fluently, but may have difficulty repeating words and sentences.

In Anomic aphasia, a person has difficulty retrieving the names of objects even though they know what the objects in question are and how they can be used. They may speak in full sentences but use vague or unusual descriptions to compensate for the inability to name a specific object.

Unlike traditional losses that culminate in a tangible absence or death, the loss in aphasia is intangible but deeply impactful.

In contrast, with non-fluent aphasia, people speak haltingly, using a great amount of effort to produce sounds or words. Broca’s aphasia is the most common type and results from damage to the frontal lobe. People with this type of aphasia understand speech and know what they want to say, but can only speak in short words or phrases produced with great effort.

Global aphasia is the most severe form of aphasia where individuals struggle greatly with both understanding and producing speech.

Although these divisions provide a useful typology and overview of the condition, aphasia is a complex disorder that affects people in different ways. The same variety applies to the potential for improvement. Each case will be different, although some predictors of potential recovery include the severity of the initial damage to the brain.

More than a loss of words

The stark medical terminology of “neurological communication disorder” scarcely captures the profound impact of living with aphasia. It fails to encompass the profound sense of loss aphasia can evoke. It doesn’t reflect the frustration of knowing what you want to say but being unable to find the words. Or the helplessness that accompanies every failed attempt to join a conversation or simply express “I love you”.

Aphasia is more than a mere loss of words. Even though it doesn’t diminish cognitive abilities, nor does it steal a person’s identity, or intellect, the fundamental change to a basic human function cannot leave a person’s sense of self unscathed. 

This alteration of identity emphasises aphasia as a striking embodiment of ambiguous loss. Coined by Dr Pauline Boss, the term “ambiguous loss” describes a sense of loss without a clear prospect of resolution. It is a complex and unsettling form of grief, leaving the person experiencing grief in a sort of emotional limbo.

For relatives and friends, it’s the end of the relationship as it was known, a silent goodbye to shared jokes, shared confessions and shared comforts.

Unlike traditional losses that culminate in a tangible absence or death, the loss in aphasia is intangible but deeply impactful. It affects one’s self-concept, interpersonal relationships and daily life, thereby challenging our conventional understanding of loss and grief.

Aphasia results in extended and complex grief. Individuals and their loved ones are not only mourning the loss of the normal ability to communicate, but they are also adapting to a new reality. The ambiguity of the loss amplifies the complexity of the process of grieving, marking aphasia as a powerful example of ambiguous loss.

Adapting to life with aphasia

Acknowledging that aphasia is an ambiguous loss facilitates a deeper understanding of the emotional and psychological effects of the condition and helps us to recognise the unique challenges faced by those living with this condition, as well as their loved ones.

Although there is no clear-cut resolution to the grief associated with ambiguous loss, it is not an insurmountable hurdle. Learning to live with uncertainty brings with it lessons that allow us to process initial feelings of anger and helplessness. This process often yields valuable lessons, helping to transform initial feelings of despair and frustration into a renewed appreciation of life’s simplest yet most meaningful moments.

Individuals with aphasia embark on a journey of rediscovery, exploring alternative ways of communication and self-expression. They tap into the depths of their resilience, refusing to let aphasia define them.

Aphasia affects more than just the individual diagnosed with the condition. It also drastically changes the lives of their loved ones. For relatives and friends, it’s the end of the relationship as it was known, a silent goodbye to shared jokes, shared confessions and shared comforts. Roles are redefined as the familiar ways of relating to one another is disrupted.

In the absence of words, those living with aphasia often discover and master new forms of communication. They lean on gestures, facial expressions and other non-verbal cues to convey their thoughts and emotions. They become adept at using augmentative and alternative communication (AAC) devices, such as speech-generating devices or apps, to bridge the gap created by aphasia. Through these creative adaptations they find ways to connect with others and ensure their voices continue to be heard.

In my personal experience, witnessing the vulnerability of my once indestructible action hero underscored the words of renowned neurologist and author Oliver Sacks. His sentiments echo in my mind, reminding me that:

“We are all fragile in unexpected ways; it takes only a moment for a person’s sense of normality to be irrevocably changed. Yet it is within our fragility that we can find lessons in mindfulness and gratitude.” DM

Dr Sulette Ferreira is a social science researcher and  counselling therapist in private practice in South Africa. Her research interest feeds into her practice, in which she specialises in ambiguous loss. She would like to dedicate this story to Hans and Sandra Haasbroek who navigate the complexities of  aphasia with unwavering courage.