Imagine waking up from a nap so confused you don’t recognise your long-term partner and don’t even remember having a child – then, just after it all sinks in, you immediately forget again.
It sounds like a movie but, while Hollywood has long been fascinated by stories of amnesia, this is actually mum-of-two Nesh Pillay’s very real and ongoing experience.
Nesh’s extraordinary life is the subject of Prime Video series 50,000 First Dates: A True Story, which hit the streamer earlier this year.
And, somewhat ironically, she shared some of the highlights in an interview with Drew Barrymore, who played a woman with the same disorder in the film 50 First Dates.
What happened to Nesh Pillay?
“I’ve had a series of head bumps,” Nesh, 35, told Drew, explaining that the first one was in a car accident when she was 10.
“Then, three years ago, I woke up from a nap, felt a little bit funny,” she said.
“By the end of that day, I started asking JJ [Jakope], my fiancé, questions like, ‘Where are we going?’, ‘What are we doing today?’ – just being confused. By the end of that day, we went to pick up my daughter, and I remember thinking, ‘No. I don’t know how to take care of a child. I don’t have a daughter.’”
As the months went on, Nesh’s memory got worse, with it regressing to the point where it reset about once a minute. Doctors told her it was the result of her previous brain injuries, but shockingly, when there were no obvious answers, it was assumed she was faking it.
“I am not the first one to go to the doctor and be dismissed, and I probably won’t be the last, but I can shout about it the loudest,” she told Mamamia.
In fact, it was only through filming the docuseries that Nesh got any real answers. Neuroscientist Morgan Barense, who is part of the show, explained to Nesh how damaged the neural pathways in her brain were.
“The other thing is brain atrophy,” Nesh explained to Drew. “If you look at my brain, it’s a lot smaller. There’s a lot of empty space in there, which means that brain tissue is dead. We’re still kind of figuring out if it’s actively dying.”
But even the explanation of what’s going on didn’t take away Nesh’s terrifying reality of never quite knowing who everyone is around her and what she’s doing.
“My dad had me write in a notebook, you know, ‘I’ve hurt my head’, ‘I’m at Mum and Dad’s’. And, from what I’ve been told, I would stare at that notebook sometimes for hours because by the time I would get to the bottom, my memory would reset again,” Nesh told Mamamia.
“This notebook became my lifeline – it was in my own handwriting, so I trusted it.”
Her family, friends and, of course, JJ have been instrumental in her coming to terms with her life, and there has been a gradual recovery to the point the couple could have another child, welcoming a son in April 2024.
Today, only around 20 per cent of Nesh’s memories stick.
“Some days are hard. Some days I look at my kids and I get really sad that I might not remember that moment. But overall, I just focus on the gratitude of it all. I’m grateful for what I do remember … Focusing on the gratitude is what really pushes me through because, if I didn’t, I would fall apart.”
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