A woman claims her life imitates rom-com 50 First Dates due to a rare condition that causes her to repeatedly forget her partner, who has to write a diary to remind her of their relationship.
Megan Jackson, 21, from Leeds, West Yorkshire, says that she suffers from memory-wiping seizures whenever she feels too happy after developing functional neurological disorder (FND) five years ago.
The condition affects every element of Megan’s life, meaning her favourite sitcoms have to be banned because they can trigger the condition from laughing too much.
Her partner Tara Sorkin, 22, has even been forced to write a diary for Megan and show her pictures and play their favourite songs to help jog her memory.
Megan Jackson (above), 21, from Leeds, West Yorkshire, says that she suffers from memory-wiping seizures after developing functional neurological disorder (FND) five years ago
The rare condition causes Megan to forget her girlfriend Tara Sorkin, 22, (both pictured) and is unable to receive surprising news as it can cause severe memory lapses
Her partner Tara Sorkin, 22, has even been forced to write a diary for Megan and show her pictures and play their favourite songs to help jog her memory.
Megan explained: ‘It’s so depressing. I have seizures pretty much every day.
‘I only need to laugh then I have a fit. It affects every part of my life.
‘I can cope with the seizures because I really don’t have a clue what’s going on when they’re happening, but it’s the memory loss [too].
‘Sometimes I forget who my girlfriend is and that’s terrifying. Sometimes I forget family members. It’s like my memory lapses.’
The unemployed TikToker and vlogger is unable to receive surprising news as it can cause severe memory lapses, meaning a future marriage proposal from her girlfriend could be off the cards.
Megan admitted that ‘everyone’ likens her condition to film 50 First Dates, starring Adam Sandler and Drew Barrymore, which sees a woman suffering from short-term memory loss and starting her life afresh every day.
Speaking about her romance with Tara, Megan said: ‘We’ve only been together a few months and we’ve been through way too much.
Megan said ‘everyone’ likens her condition to 2004 movie 50 First Dates (pictured), starring Adam Sandler and Drew Barrymore, which sees a woman suffering from memory loss
Her partner Tara has even been forced to write a diary (above) for Megan and show her pictures and play their favourite songs to help jog her memory
‘We shouldn’t have been through this amount of trauma and I’ve forgotten her at least four times.
‘She’s really good with it. She writes diaries to me every day and keeps them in my notebook on my phone. It’s like 50 First Dates. Everyone refers to it like that.
‘She puts our songs on to try and jog my memory, but it depends how I react to it.
‘Sometimes if I come round and someone says “this is your girlfriend, Tara”, I’ll be like “what the hell – I’m not even gay”. I think no one knows [my sexuality] because I’ve forgotten.’
Many of Megan’s happiest moments have been ruined by the condition, for example when the excitement of winning a bet on the Grand National sparked a lapse and she forgot she’d won.
Megan has now launched a GoFundMe page in the hope that kind strangers will donate towards her seeing a specialist to put an end to her daily struggles, otherwise she faces a long waiting list to see an NHS neurologist.
Speaking about her condition, Megan said: ‘The most bizarre thing is I can wake up and forget I like certain foods. I’ll buy something then the next day think “why did I buy this – I don’t like that?”.
‘The worst part is when I wake up from a seizure and have no feeling in my legs.
‘I can be stuck like that for days and I have to wee in a cup or throw myself off the bed and take myself to the toilet.
‘It’s so sad that at 21, I have to make myself miserable – but not too miserable – so I don’t have a fit.’
Megan spent months being rushed to A&E by her mother Sanchia Jackson, 45, when she turned 17 after suffering up to 35 seizures a day, with some leaving her unable to walk or talk.
After a referral to a neurologist, Megan was diagnosed with FND and offered cognitive behavioural therapy (CBT), but she quickly realised it was bound to fail after she forgot the session.
Megan said: ‘The [seizures] were so scary. They explained it’s like a computer with too many windows open, and once you open another window, it just crashes. That’s why my body has a seizure. That’s how it deals with stress.
‘They said to me I have to be on a waiting list to have CBT. I finally got my appointment for that but I was only seen once.
‘Every time I had a seizure, which was every single day, my memory would restart, so I’d forget the appointment I’d just had.
‘I’ve not had any help since and that was five years ago. I’ve been left in the wings for so long.’
Megan’s relationships are hugely affected by her condition, meaning her first girlfriend Tara can never buy her big presents or surprise her for fear of triggering an episode.
Talking about their future together, Megan imagines that a marriage proposal could cause another a memory lapse and her to be ‘out like a light’.
Megan spent months being rushed to A&E by her mother Sanchia Jackson, 45, when she turned 17 after she suffered up to 35 seizures a day (pictured left and right having a seizure)
Many of TikToker Megan’s happiest moments have been ruined by the condition, as the excitement of winning a bet on the Grand National sparked a lapse and she forgot she’d won
Megan explained: ‘Part of my illness has probably stemmed from not being myself. I only recently came out as a lesbian since meeting my current girlfriend.
‘When I met her, my fits were way worse because I knew I had to tell my family. It would just come out in my fits otherwise.’
She added: ‘It’s so traumatic for all of us, especially when it’s someone so close to you who you spend so much time with.
‘Even if she shows me pictures, it means nothing because I’ve got no feelings there for the person at all. It’s so sad. I worry about life events such as being proposed to.
‘We were talking about our wedding day the other day. If she proposed to me, you’d have to get it on camera because I’d be out like a light. You can’t casually bring getting married into conversation.’
Megan’s emotions have triggered seizures on several occasions, with some of her most joyful moments in her life being ruined by her horrific fits.
After these draining episodes, Megan sometimes develops tics or slurred speech, while on other occasions, she has lost her voice completely.
Megan continued: ‘Heightened emotions cause me to have these seizures.
‘Sometimes it barely looks like I’ve had a fit, but for some reason my hand stops working, [or] I’ll have slurred speech or stammer.
‘Whenever I get stressed, it comes out in weird ways. If you try to suppress it it makes it worse, so you’ve got to ride it out.
‘There are certain programmes I can’t watch because they’re too funny or too sad.
‘There’s a programme called This Country. Every episode makes me laugh so much that it can put me into a seizure. The whole family know not to put it on when they’re around me.
Megan’s emotions have also triggered seizures on, meaning some of the most joyful times in her life have been ruined by her fits (pictured with brother Sam, 18, and sister Deanna, 25)
Last summer, Megan was forced to leave her job after a severe seizure but weeks later, she tried washing her work clothes after she forgot that she was no longer employed
‘When I was 18, I once bet some money on the Grand National and my horse came in. I was getting so excited that I was going to win that I passed out.
‘When I woke up, my mum said “Megan, do you remember you’ve just won some money on the Grand National?” I had no idea it was even on that day, then I checked and I’d won some money, so I passed out again.
‘It’s like a vicious circle. I can’t be surprised or anything.
‘Loud noises and fire alarms are really dangerous. Fire alarms set me off, then I’m out of it and I can’t get out the door quick enough.
‘I could wake up anywhere without any [working] legs. I can never go out by myself.’
Last summer, Megan was forced to leave her job after a particularly severe seizure but weeks later, she tried washing her work clothes after she forgot that she was no longer employed.
Megan explained: ‘I can’t work. I’ve been let go by so many jobs.
‘[Even a few weeks after losing one job], I had a really bad fit where I lost a lot of my memory.
‘I woke up, went and got all my work stuff. I washed all my work clothes and I said to Deanna [her sister], “I’ve got to go get my washing because I’ve got to dry it before tomorrow”.
‘She said “Megan, what do you mean?” I said “Well, I’ve got work at 08.15am”.
‘She burst into tears. She said “Megan, you don’t work there anymore. You don’t have a job anymore”.
‘That was the scariest thing. If I didn’t have anyone there, I would have gone to work.
‘I can’t hold a job down and I’m not in receipt of any benefits because the government takes forever to decide if you can have them or not.’
Megan has committed herself to helping others with invisible disabilities, specifically FND, through her TikTok account, which now boasts more than 280,000 followers.
Megan (pictured with mother Sanchia) has launched a GoFundMe in the hope that strangers will donate towards her seeing a private specialist to put an end to her daily struggles
She has already raised more than £1,800 on her GoFundMe, mostly from her TikTok followers (Megan is pictured with brother Sam, stepdad Ben, mother Sanchia and sister Deanna)
She has already raised more than £1,800 on her GoFundMe page, mostly from her loyal followers, but it is a small figure against the financial strains of private healthcare.
Megan explained: ‘The reason I set up my TikTok account was because this generation is so influenced by social media.
‘When you look at my Instagram, you’d think I’m a regular 21-year-old girl who goes out, sees her friends, goes on holiday, when in reality, I’m extremely disabled and I don’t get to do as many things as I’d like to.
‘I can’t drive, I can’t go anywhere on my own, I can’t bath without being watched.
‘I wanted to make more people aware of hidden disabilities. I want to be a voice for others going through what I am. It gave me a purpose.
‘I want to share my journey with people on TikTok as they are donating.
‘The neurologist appointment will be around £300, then MRIs are £500. The likelihood is the therapy I need is CBT.
‘I either need to go to an in-patient unit where I can get all the different types of therapy at once, or I’ll need to go once a week. If I do that privately it’s going to cost so much money.’
You can donate to Megan’s page on www.gofundme.com/f/help-meg-go-private-for-fnd-teststreatment.