Nesh Pillay had a handsome boyfriend, a thriving career and a loving daughter. Then, one day in 2022, she laid down for a nap. And when she woke up, she couldn’t remember how old she was, the fact that she had a daughter or who her boyfriend was — “Are you the Uber driver?” would become a common refrain, with her memory resetting as often as once a minute.
A series of traumatic brain injuries throughout her life — a car accident and several falls, including an ice skating accident — eventually triggered severe memory loss along with other neurologic symptoms like aphasia (a language disorder) and tremors, leaving Pillay struggling to rebuild her life and figure out how to maintain a healthy relationship with her boyfriend, JJ Jakope.
(“It’s important to note just how little is understood about concussions, even by the best neurologists,” Pillay said. “I want people to know that concussions don’t just happen to athletes and that, because we don’t fully understand them yet, it’s crucial to take special care of your brain.”)
An affecting new two-part docuseries, “50,000 First Dates: A True Love Story” (dropping Tuesday on Prime Video), explores the real-life challenges behind Pillay and Jakope’s rom-com-esque situation and how their love helps them persist through them all.
We chatted with Pillay about her haters, her nervousness at signing on for a docuseries — and how her story might have been told differently if she was a man.
How are you feeling these days?
I know who I am, I know my loved ones, but I can’t always remember friends and acquaintances from the past. New memories rarely stick; I think I can only retain about 20 per cent of new memories. But I’ve implemented a lot of strategies to help me, including taking a lot of pictures and videos, and journaling.
The scariest part of my recovery is that I don’t know if I will lose my memory again. I don’t know if one day I will wake up and not recognize my children. I get really morose sometimes when I’m doing something completely mundane with my children and I know it’s very likely that I won’t remember the moment. But for me, those mundane moments with my children are more precious than gold.
The series shows some of your haters who doubt your health condition. How do you stay resilient in the face of this adversity?
I don’t really blame the haters on the internet nor do I think they’re wrong. In a time of AI and influencers, I think they’re right to question me and question my motivations. That just means that they’re thinking critically. I’ve had doctors and loved ones tell me I’m faking, so a stranger on the internet believing I’m faking doesn’t really phase me. I’m more interested in the larger narrative than individuals believing my personal story. I’m more interested in pushing for a change so that other people don’t feel alone.
After all the outcry online, were you nervous about appearing in this docuseries?
In general, I’m not a person who is comfortable showing vulnerability. I was raised with the mindset that everything should be polished and perfect. We keep things private and we don’t bring shame to our families. That said, I realize that if more people were vulnerable and open it would normalize pushing through hardship and learning from it. I had to challenge myself mentally while filming. I did not physically look like I wanted to look. My life was not perfect. My brain, of course, was far from perfect. I felt like the world wanted to see a perfect love story and I felt ashamed that we couldn’t always give them that.
That said, I truly believe that what people crave more than perfection is authenticity because authenticity gives them the room to be themselves in their own lives. This project for me wasn’t a vanity project. It was an opportunity to make some noise and help some very worthy people feel seen.
Your love story with your partner JJ is at the heart of this docuseries. What has been the weirdest part of making this show with him?
At first, I struggled a lot with showing the relationship authentically. I wouldn’t normally share the cracks in our relationship with my parents, let alone the whole world. I didn’t want to open up room for “leave him, sis” comments or, worse yet, “leave her, bro.” As much as the world sees JJ as my caretaker, I see myself as his protector and I didn’t want to open him up to criticism. I wanted to give the audience the perfect love story I thought they so craved. But we are real people and rom-coms are not real life.
Did making this docuseries test your bond? How?
I think the filmmakers sensed that I wasn’t being completely open when we started filming. Relationships are hard and they come with challenges, even if both parties have functioning brains. But as time went on, we both opened up more, and anytime a couple shows up with complete honesty and vulnerability their bond is bound to be tested. I was also really aware of the fact that often women’s stories are only told alongside a male partner. I wanted my story to matter for more reasons than the relationship, so I found myself pushing back on the romantic narrative a lot.
If I was a man, I suspect … I would be asked more about how I manage the changes to my career and there would be a focus on my strength. I’ve noticed that with movies that cover memory loss, if it’s about a woman’s journey it’s a love story. But when it’s about a man it’s about his being and his experiences. Perhaps this is because men are known to leave their sick partners at six times the rate of women. So it’s not considered newsworthy when a woman stays and supports her partner.
Under normal circumstances being a mother and being a woman is difficult. There’s a higher expectation that we will carry a mental load and, even if you’re unable to carry much, those expectations continue to exist. I wish people asked questions about how I continue to support my family and my children, or the legacy I hope to leave. I can say for certain that while I am eternally grateful for my relationship and love story, I hope that my legacy contributes to research and awareness of traumatic brain injuries and building a support system for those affected.
“50,000 First Dates” streams on Prime Video on Feb. 11.
