For National Epilepsy Week, What We Seee spoke to Hum Fleming, face of Young Epilepsy’s In The Moment campaign.

“I developed temporal lobe epilepsy when I was around 13, although it wasn’t diagnosed for a few years,” Hum Fleming tells What We Seee. “I would experience these ‘episodes’ which, even to this day, are difficult to explain or describe, as they really are such unidentifiable and strange experiences.” Epilepsy can manifest in different ways — though many people don’t have an understanding of just how varied it can be. Fleming is one of the faces of the In The Moment campaign from Young Epilepsy, which aims to shine a light on the real impact that epilepsy has on young people. They have encouraged people with the condition to open up and share their experiences.

“I’m conscious for the seizure and on the outside look OK — maybe just like I’m in a daydream or a trance, albeit pale and sometimes I produce a lot of saliva so either continually swallow or on rare occasion dribble,” Fleming explains. “On the inside, I feel incredibly ill and panicky. You feel out of control — your heart races, I have a rising sensation throughout my body, my peripheral vision starts to go glittery and vague, and I feel like everything is closing in. The strangest symptom, which seems to be generic for ‘absence seizures,’ like mine, is the overwhelming sense of déjà vu — for me, this is the scariest element as realities get blurred and it sometimes feels like you are in a dream reliving a moment you have already lived. The horrible thing is, like sleep paralysis, the fact that you are stuck — I can see and hear the people around me, but can’t communicate or interact in any way.” Fleming explains that the inability to communicate or ask for assistance is an incredibly difficult and surreal experience. “You want to ask for help or convey that you feel unsafe and want someone to hold you — but you just can’t. You have to ride out the wave and it always feels much longer for me than the actual episode is from the outside. I think that, because all of these strange and confusing symptoms, it almost feels like an out of body experience —  especially the first one I genuinely thought I was dying and having an out-of-body experience!”

Like many, Fleming struggled to get a diagnosis — partly because after the episode was finished she would return to normal and partially because it was difficult to describe to a doctor. It was only after MRIs and meeting with a neurologist that she received the diagnoses for temporal lobe epilepsy.  “ A lot of people might have been disheartened or scared of the label ‘epilepsy’ — oddly, I was incredibly thankful to finally know what it was that I was experiencing and that I could now be treated. Also, as the symptoms are so unrelatable, you genuinely start doubting yourself and start questioning if you’re going mad. So a scientific label is reassuring.”

Accelerated Forgetting

While the episodes are difficult enough, many don’t understand the potential long-term effects of living with epilepsy, but for Fleming that was the most difficult thing to accept. “The most difficult thing to come to terms with for me was the memory loss I experience from having the scar in my hippocampus,” she explains. “Having ‘accelerated forgetting’  is a continual hindrance and a source of sadness, even now. Memories are life, they mould your character and can take you out of dark places. They are the keys to glimpses of your most happy times that should be treasured.” It’s not just the occasional memory blip, it’s major life events that can be swept away. Other people might forget a face or a name, but for Fleming the problem is a lot larger. “I wouldn’t mind so much losing just these little things, but it can be historic events in one’s life are things that you wish you would have with you forever. Weddings, Christmas, times spent with loved ones and family laughing and being merry.” Fleming has had to accept the fact that those memories can disappear. 

In The Moment

But after having to come to terms with her own condition, Fleming realized that she wanted to give back. “I realised I wanted to be an advocate for Young Epilepsy after they approached me through Instagram and I learnt about their incredible work with children who have the condition and their support for the families too,” she tells What We Seee. “Growing up, none of my friends — in fact, not anyone I knew — had had epilepsy, so I did feel isolated and almost alien. I didn’t always feel comfortable disclosing to people that I had it. Unfortunately, with the ongoing memory loss, I eventually had to be open and embrace it — due to people’s sheer disbelief that I didn’t remember them. To avoid people thinking I was incredibly rude and ‘blanking them’, I had to be open and tell them about the condition to try and excuse my behaviour. It was a necessary card to play in order to hurt friends — or, strangers, as they appeared to me — less.”

But as she became involved with Young Epilepsy, Fleming realized that she wasn’t along. Many people struggle with their diagnosis — and keeping their condition a secret is surprisingly common. “I then learnt from YE that 40 percent of epileptics don’t even tell anyone that they have the condition through fear of being judged and what the ‘label”’ entails,” Fleming explains. This is a deeply unfair burden that young people with the condition have to endure — and it’s because of a lack of understanding in society more generally. “A huge part of this problem I believe is the lack of general knowledge about the condition available to the public. The most common comment anyone seems to say when they discover I have epilepsy is that I can’t be around flashing lights or I’ll be on the floor shaking… when in fact, something like only 4 percent of epileptics are photosensitive and there are 40 different types of epilepsy and seizure symptoms.”

And yet, as Fleming says, many of us have an overly simplistic view of the condition. But she — along with Young Epilepsy — are ready to change that. “I want to help educate people in the hopes it will dispel the fear, unease, and the stigma around having the condition,” she explains. “It’s so sad to think individuals lead their lives in silence and secrecy about sharing such a big part of their life. The condition is now more common than diabetes in children, yet so little is known — we should try and change that so people lead full and confident lives and have the support systems in place to do so. In The Moment is a campaign by Young Epilepsy that I am proud to be part of — spreading the message is that epilepsy could affect anyone at any time. Your life or your family can change in a single moment — whether it’s your first seizure, learning of a family member who has developed it, there are so many ways epilepsy affects people’s lives.”

Pushed To Your Limits

And Fleming is proof that living with the condition doesn’t have to slow you down. She’s up at 6:30 am to hit her favorite workout, Box Clever Sports, in the early morning. “In car park on Ladbroke Grove, it’s not one of the pink frills boxing places smelling of air freshener with changing rooms the same size as the gym and where you don’t even break a sweat!” she says. “This is a raw, invigorating place where you are pushed to your limits, with 20 mins HIIT, 20 all out punching on the bag, and then 20 of circuits or abs. It’s hardcore and you leave drenched, but buzzing! And now I almost rely on it as much as my first cup of coffee to set me up for my day.” Her day stays busy from there. With a successful career in PR, she’s working with clients, meeting with journalists, coordinating shoots — and handling whatever comes her way. “That’s the fun of the PR world and what actually lends itself to my memory loss — the ever-changing nature of the industry I work in.”

But she’s always up for a new challenge. “I’m competitive by nature and feel like I even compete with myself sometimes! I set goals or embrace tasks I wouldn’t usually feel overly confident doing. The end result is far more rewarding and worthwhile when it’s something you initially feared.” And that includes speaking up about epilepsy. Even though it was an intimidating leap to take, Fleming highly recommends being open about the condition. “After my first campaign video and interview went live I received some of the most special and precious messages which I will treasure forever,” she explains. “They were from people who themselves had either been affected directly or indirectly by epilepsy. Most of them thanked me for opening up and said they had shared the same experiences, doubts symptoms etc. And how it was nice to realise they were alone. On the flip side, it was equally as lovely for me to read the messages and see that I wasn’t alone. If me talking publicly about this campaign can help or touch anyone —  even if just a few — then it has been worth it. It’s been so humbling to be part of such an amazing experience; to meet and interview other ppl who have the condition, share in our experiences and laugh together about things that no one else could really relate to, like that déjà vu feeling.” 

And what’s next for Fleming? She’s taking her incredibly grounded, positive attitude and is ready to do great things. “As for overall long-term goals, I think ultimately it’s to be happy,” Fleming tells What We Seee. “I know I let the memory loss affect me and find it hard to deal with, but I am doing my best to kick on and live in the moment. After all, even if I don’t remember them at least I was lucky enough to have those experiences in the first place! Sometimes it’s best to think, ‘Fuck it, I’ve forgotten what I’ve forgotten!’ I can’t change that, nor can anyone else, so crack on have fun.”

To find out more about Young Epilepsy and the In The Moment Campaign, please check out their website.