‘I lose my memory every six months’: One woman shares the dark side of epilepsy

For Hum Fleming, epilepsy means friends and family can appear to be total strangers and global events like the pandemic are a blur. Photo / Instagram

Although she’s beautiful and well-connected, parties can be daunting for Hum Fleming. Often a stranger will wave at her, or worse, give her a hug and start reminiscing about people and places she’s never heard of. She’ll smile and play along or try to change the subject – because the problem is these aren’t strangers; they’re school friends, former work colleagues or even men she has dated.

Fleming has epilepsy. A tiny scar on her brain has caused seizures – both convulsive ones where she fits and absent seizures that leave her unable to move or speak – since her early teens. But arguably more devastating is the scar’s location on the hippocampus, where long-term memory is stored. This damage has given her a type of amnesia officially called “accelerated forgetting”; the result is that she can only ever fully remember the last six months of her life.

It sounds like the sort of plot device her great-uncle Ian Fleming could have used in one of his spy novels – the glamorous Bond girl who can’t remember her past. Except in this case it’s all too real.

“It can make me feel really insecure,” Fleming says. “If someone I don’t know comes up and gives me a big hug, I have to assess the situation. Who is this person to me and how do I handle this? It sounds strange but if it’s someone I’m close to I get this feeling of inner comfort – and I try to trust the feeling.”

It is easy to forget that Fleming, 32, has any sort of condition. She shares a house in Notting Hill with friends, spends weekends with her parents and twin sister, Chloe, in the Oxfordshire countryside and has held down a good job in fashion PR for the best part of a decade. Yet this is a woman who can’t remember her school days, her years at Leeds University or many of her friends’ weddings. She has introduced herself to relatives. She has looked confused when people mention major global events like 9/11; even the pandemic is now mostly a blur to her.

“One of my greatest fears is looking uninformed or odd,” she says. “I’m sure I’ve had lots of embarrassing encounters but I suppose I’m lucky that I don’t remember them.”

It should, by any normal definition, be almost impossible to interview someone with such extensive memory loss - and yet Fleming surprises me by being not only willing but able to talk about the onset of her condition. “I’m not the most reliable witness but I can definitely tell you about it,” she says. “With so much about my past, I’m not sure if what I am recounting is an actual memory or something I’ve been told often enough that it feels real. But either way, I know what happened.”

Fleming’s first seizure happened when she was 13, lasted 20 seconds and was “terrifying”.

Back at boarding school, she started having up to nine seizures a week – but because they typically made her look vacant and start producing excess saliva rather than have what we think of as a classic fit, her teachers didn’t associate them with epilepsy. At first the family called them ‘Hum’s funnys’ and Fleming herself was more concerned about her classmates’ reactions (“it’s not ideal at that age to start dribbling out of nowhere”) but her parents quickly became worried. And, of course, for the first time in her life, Fleming started to forget things.

“I think that was probably more jarring for everyone else than it was for me,” she says. “I don’t know what I’ve forgotten because the memories just aren’t there anymore, but for my family and my friends it must have been frightening.”

Taken to doctor after doctor, she recounted each time the metallic taste in her mouth, her strong sense of déjà vu and her vivid dreams; some doctors thought it was her heart or a mental health issue while others prescribed antidepressants. “The scariest thing, I think, was not having a diagnosis.”

Eventually a neurologist diagnosed petit mal epilepsy and a brain scan explained why she was losing her memory. Drugs have helped reduce the seizures to about four a year, that usually occur when she is asleep, but her memory of any given person or event will always start to fade after six weeks and often be fully gone by six months; for Fleming, life will forever be entirely rooted in the present.

“Like everyone, I’m sure I’ve had some difficult moments,” she says. “Maybe it’s a good thing I don’t remember them all.”

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She tells me about cases of mistaken identity and the times Chloe has had to steer her away from former lovers; she also, more frighteningly, talks about how her seizures have become convulsive in adulthood and how at night she sometimes bites her tongue so hard it bleeds and occasionally smothers herself with a pillow. “It’s not ideal to find a woman you’ve just started dating with blood pouring down her face unable to breathe, is it?”

Fleming now has a boyfriend; a man who is fully aware of her condition, who reminds her to take her medication and knows exactly what to do when she has a seizure in the night. “I worried about telling him the extent of my memory loss but it never bothered him. He accepted it from the beginning.”

Her job is a good fit. “Fashion collections change every six months,” she says. “And Instagram, strangely enough, has been great. There are so many events I can relate to through photos even if I can’t remember the actual day.”

Mostly, though, she credits her twin sister with helping her live a normal life. Fleming is upbeat throughout our conversation, but when she talks about Chloe, she starts to cry. “I’m very lucky to have lived alongside someone else,” she says. “Because whatever I’ve forgotten, Chloe has always been there next to me, remembering. She’s been more of a support than she will ever realise.”

Her sister, essentially, is her hard drive, holding on to all her memories and allowing her to stride into the future with some sense of her past. That is why she wanted to do this interview – to show young people with epilepsy how possible it is to have a happy life.

“I realise none of us will be here forever and forgetting people does frighten me,” she says. “But I’m starting to understand that living in the here and now can be a wonderful thing, too.”