Rare condition leaves sufferers unable to picture things

The man who can’t picture his wife’s face when they’re apart: People reveal what it’s like to live with a rare condition that mean they have complete ‘mind’s eye’ blindness’

  • Aphantasia is a condition where people are unable to visualise in their mind’s eye
  • Punteha van Terheyden’s husband Andy, 37, cannot ‘picture’ their wedding day 
  • Wendi Coles, 61, from Buckinghamshire, cannot visualise her late husband 
  • But milliner Claire Strickland explained it doesn’t hamper her creative flair
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From a woman who cannot ‘picture’ her late husband’s face to a man who can’t visualise how his wife looked on their wedding day, these people suffer from a rare condition that means they don’t have a ‘mind’s eye’. 

Aphantasia, a term coined by Adam Zeman, a neurologist and professor of cognitive and behavioural neurology at Exeter University Medical School, describes people who are unable to visualise. It affects some 2 to 3 per cent of the population, or around 2million people in the UK.

‘For most people, calling to mind an apple or the front door, will involve an experience that’s at least partly visual,’ Professor Zeman explained. 

‘People with aphantasia are unable to do that. They can think about their apple, but there is no visual content to go with it, and therefore, they lack a mind’s eye.’

The way this manifests can vary greatly. Some struggle to remember memories in general, for example, while others have excellent recall. Some with aphantasia cannot visualise even in their dreams, while others dream vividly. 

Next month, the first medical conference exclusively on this problem is taking place in Exeter, led by Professor Zeman. 

Here, journalist Punteha van Terheyden, whose husband Andy, 37, has aphantasia, tells her own story – and speaks to three others with the condition. 

‘MY HUSBAND CAN’T PICTURE OUR WEDDING DAY’   

Journalist Punteha van Terheyden, lives with husband Andy, 37, an assistant headteacher in Hemel Hempstead.


Punteha van Terheyden, from Hemel Hempstead, noticed that her husband Andy, 37, frequently struggled to visualise things she described to him and can’t picture key events in his life including their wedding day (pictured) and the birth of their daughter Amelia

Returning home from the wedding dress boutique, I was thrilled to tell my fiancé Andy I’d found the gown of my dreams. 

Of course, the details would remain a secret until I walked down the aisle, but ever the romantic, I quizzed Andy on what style he pictured me in. 

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I was a little disappointed to see him draw a blank but it wasn’t the first time this similar dynamic between us would occur. 


The couple realised that Andy has aphantasia, an emerging neurological condition that means it’s impossible to form a picture in the mind’s eye (Pictured: Andy and Punteha)

Whilst I’d always been detail-driven, assistant headteacher Andy, 37, seemed unable to describe much of anything at all.

I shrugged it off until August 2018, when the chance reading of an article changed everything.

I read about aphantasia: a term newly coined by neurologist and professor of cognitive and behavioural neurology, Adam Zeman, of Exeter University Medical School.

The article described an emerging neurological condition that leaves sufferers with an inability to picture things in their mind’s eye.

Andy and I both completed online tests devised by experts to determine levels of vividness when visualising. I scored highly, meaning I was able to vividly and clearly picture things. Andy, was at the other end of the spectrum, with complete mind’s eye ‘blindness.’


Punteha says she now creates a visual document for Andy, offering hours of footage and images of key moments in their lives with daughter Amelia, pictured together

He couldn’t picture our daughter’s birth, the faces of his relatives or a single moment of our wedding. 

We realised when Andy reads, he cannot picture that which the words describe and he cannot hear music in his ‘mind’s ear,’ either.

Upon this discovery, Andy went through many emotions, but mostly a sense of sadness on realising he was ‘missing out’ on a whole dimension of life others could easily access. 

Though, there was an element of relief that he finally had an explanation for why so many things seemed harder for him than everyone else.

It explained, for example, why Andy’s reading of books was painfully slow, and why descriptive passages were difficult to comprehend. He also struggled with directions, or remembering simple conversations. 

A typical question I’d ask and Andy would struggle to answer, was: ‘How was your day?’

What is Aphantasia? 

Adam Zeman, Professor of Cognitive and Behavioural Neurology, University of Exeter Medical School says: ‘For most people, calling to mind an apple or the front door, will involve an experience that’s at least partly visual. People with aphantasia are unable to do that. They can think about their apple, but there is no visual content to go with it, and therefore, they lack a mind’s eye.

‘I coined the term aphantasia in 2015, after being contacted by around 20 people with lifelong lack of a mind’s eye . They had read about a patient I’d studied, who’d lost his ability to visualise following cardiac surgery – and realised they were similar, but had never been able to visualise

‘Imagery experience is rather private and difficult to observe, but a vividness questionnaire helps us to quantify it. Those with aphantasia score very low on this scale. About two per cent of the population fall into the very low range with no voluntary visual imagery at all. Others have hyperphantasia – imagery ‘as vivid as real seeing.’

‘About half of the people who say they have no mind’s eye still dream visually. That makes neurological sense. What happens in your brain when you’re dreaming is very different to the process that occurs when you’re awake and visualising. Dreaming is ‘bottom-up,’ as it starts deep in the brain stem, whilst visualising is ‘top-down,’ driven by the frontal cortex.

‘Imagery can probably be cultivated, but people with aphantasia mostly don’t succeed in ‘learning’ to picture things in their mind. There may be a biological cause for the lack of ability to visualise in people with aphantasia.

‘Interestingly, a third of people with aphantasia find it hard to recognize faces, whilst a third report poor autobiographical memory. If they’re sitting and talking with friends about shared experiences, they can’t summon up the details or ‘relive’ the events.

‘There is a tendency for people with aphantasia to work in mathematical, IT or engineering roles, though we have come across hugely creative artists with total aphantasia.

‘We believe that it can occur in more than one context and with fascinating variations.

‘Hyperphantasia is the converse – imagery so vivid that it rivals ‘real seeing.’ People with hyperphantasia are probably more likely to experience synaesthesia, the merging of the senses, than those with aphantasia or average imagery. It can be advantageous to be able to summon up the visual details of past experience – but it can lead to confusion if one can’t tell them apart imagined from real events!’

Professor Zeman’s Extreme Imagination Conference – a world first – is taking place at the University of Exeter 5-7 April 2019 alongside an exhibition of aphantasic and hyperphanatasic art at the Royal Albert Memorial Museum, Exeter 

And he’s not alone. Aphantasia is estimated to effect 2-3 per cent of the population – almost 2 million people in the UK alone – who all have their own particularly unique manifestation of the condition.

Whilst all cannot picture things in their minds eye, some still dream vividly. Others struggle to remember memories in general, whilst others have been commended on their excellent recall. 

I also use photos as a way to bridge the gap between his memories and aphantasia.

I hope the tens of thousands of pictures and videos I continue to add to will one day enable Andy to look back and see what our first home looked like, the nursery we painted together for our first-born, the beautiful lighting of the register office we married in, the holidays we’ve shared.

It feels laborious at times, but without this visual record keeping of our life as it unfolds, I’m certain Andy would look back one day and feel terribly sad about his inability to picture these things. With the technology we now have access to at our fingertips, there’s no reason for that to happen. 

‘I CANNOT “SEE” MY LATE HUSBAND IN MY MIND’ 

Full time carer and mother-of-two, Wendi Coles, 61, from Worminghall, Buckinghamshire first realised in 1997 she was a non-visualiser


Wendi Coles, 61, from Worminghall, Buckinghamshire, a carer and mother-of-two says she first realised that she couldn’t picture things nearly 20 years ago – and it came as a relief


Unlike many sufferers, Wendi says she dreams vividly and enjoys being able to picture her late husband Phil in her sleep (pictured above with her son Matthew)

‘It was a relief,’ Wendi explains, ‘as it made me realise I wasn’t stupid and in fact, I am an intelligent, independent capable person.’

A carer to her eldest son Matthew, 38, Wendi explains how discovering this quirk of her mind’s eye reinforced the importance of keeping a routine.

‘My life would be easier if I could visualise, but I manage by being organised, especially where Matthew is concerned as he is totally dependent on me for all of his needs,’ Wendi says. ‘I follow a strict time table and have support workers who help me with Matthew.’


Wendi says she has photos of her late husband Phil, pictured, around her because she struggles to remember his face in her mind’s eye

Wendi also has schedules in place to help remember daily tasks such as ordering logs for the fire in her rural home and getting oil for the tank ahead of storms and bad weather.

Wendi adds: ‘I don’t like routine but without it I wouldn’t get everything done that needs to be done.

‘Food has always been a problem because if I don’t look in the fridge to see what is there, I don’t remember. I buy a lot of frozen food so as not to waste money by letting food spoil.’

The condition also brings another Wendi another side effect – she cannot picture her husband of 34 years, Phil, who sadly passed away at just 58 of a sudden brain haemorrhage in February 2012.

‘My aphantasia primarily manifests itself by not allowing me to visualise, remember my past and the majority of people who have been in it.

‘I feel, rather than see Phil in my mind’s eye. I have photos of him dotted around the house to keep him in mind. Luckily, I only have to look at Matthew, 39, and Peter, 34, to catch a glimpse of my husband as they look a lot like him.’

Unlike Andy, Wendi dreams vividly, especially about Phil when she is upset or feeling anxious, which she finds reassuring.

These fluctuations in aphantasia experience make the condition all the more fascinating, particularly when we assess the relationship between being able to visualise, and the ability to imagine.

‘I CAN CREATE WITHOUT VISUALISING’ 

Claire Strickland, 38, from Isle of Dogs, London, doesn’t see her aphantasia as an obstacle in her ability to create and design


Milliner Claire Strickland, 38, from Isle of Dogs, says her aphantasia, which means she sees her hat designs as black-and-white ‘blobs’ in her head, hasn’t been an obstacle to a successful career 


Claire, pictured at work in her studio, assumed she had a form of dyslexia when she couldn’t picture things and became ‘obsessed’ with aphantasia when she first discovered the condition

A milliner by trade, Claire creates unique and unusual cocktail hats for parties, events and festivals, as well as for stage and film. In her spare time, she is an artist, and will be showcasing her work at the first medical conference solely on aphantasia, taking place in Exeter this month.

She says: ‘When I close my eyes to think about something, all I see is black and white splodges, sometimes with red dots. In fact, I suspect I am looking at the light coming through my eyelids.

‘It is utterly alien to me that most people have a mind’s eye and see pictures. I’ve never been able to do that and rarely have visual dreams.’


 Of her craft, Claire says: ‘I will be constantly thinking it through until I come up with the answer. I can’t picture it, but I just know it’


The milliner says she doesn’t want youngsters with the condition to think they can’t achieve creative ambitions. Pictured, one of Claire’s designs

Upon first realising she had aphantasia in 2017, Claire become ‘obsessed’ with talking to friends and family about it.

‘Most people are baffled about how I can create or design if I cannot visualise things, but I problem solve and think through different options just like everyone else – I just do it without the visuals in my mind.

‘If I’m working out how support a large structure of hair or how to attach something on a headdress, I will be constantly thinking it through until I come up with the answer. I can’t picture it, but I just know it.’

For Claire, it’s an important distinction.

‘I want to pop the bubble of people mistakenly thinking aphantasia is a barrier to creativity. I’d hate to think of creative teenagers who’ve discovered they have this condition and wrongly believe they can’t fulfil their artistic dreams. It’s not an obstacle in the slightest.

‘I TAKE PICTURES TO DOCUMENT THE WORLD AROUND ME’ 

Engineer Alan Kendle, 58, from Billericay, Essex wrote a book: Aphantasia – Experiences, Perceptions and Insights.


Engineer Alan Kendle, 58, from Billericay, Essex used to thin he was dyslexic because of his lack of ‘mind’s eye’ 

‘I had always thought I had some form of dyslexia, until I heard a doctor speaking on a radio programme about aphantasia, and I knew this was it,’ Alan explains.

‘It totally made sense to me and explained how I experienced the world. For me, aphantasia impacts all five senses and it that in itself can be difficult to explain because sensory ability is entirely subjective and hard to measure.’

Luckily for Alan, it didn’t seem to affect his work as he believes the practical nature of his job is well suited to how his mind works.

And much like Wendi, Alan makes practical adjustments to help with the day to day.

‘I cope by leaving things in my house in certain place,’ he adds, ‘so I know where something should be, rather than failing to picture where I last left it.

‘I also take pictures of just about everything it helps me record the world around me and I feel the need to keep those digital images.

‘I do wonder the impact the condition has had on my education and learning. I would have struggled to absorb knowledge when I was at school and I realise that now.’

However, Alan does concede the impact of aphantasia on his memories is tougher to take, as he cannot picture loved ones who’ve passed on, or ‘hear’ their voices in his mind.

‘This does mean pictures and videos are everything for me, and I take as many as humanly possible and socially acceptable.’ 


Engineer Alan Kendle, 58, wrote a book: Aphantasia – Experiences, Perceptions and Insight 

 

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