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Woman Who Believed She Was Going Insane After She Began Hallucinating Was Actually Losing Her Vision

PA Real Life/Collect

Haunted by terrifying hallucinations of imaginary figures and kaleidoscopic colors, a young woman who feared she was “going mad" was relieved when she discovered she was actually losing her sight.


Eight years ago, when campaigns officer Kirsty James, 29, of Caerphilly, Monmouthshire, South Wales, began seeing apparitions in her living room and imaginary lorries parked outside her house, she questioned her own sanity.

Diagnosed with Stargardt disease at just 13 – a genetic eye condition affecting the central part of the retina – and told she would eventually go blind, she did not think to connect her “visions " with her failing sight and, scared of being dubbed “mad," suffered in silence.

Kirsty and Bass (PA Real Life/Collect)

Finally, in 2011, after meeting Tom, 34, who would go on to become her husband, in a nightclub, she told him what was happening – and confiding in someone for the first time gave her the courage to then mention her symptoms to medics.

Thanks to the support from Tom, who works for the Welsh Cooperative Centre, she was diagnosed with Charles Bonnet syndrome (CBS), which causes someone whose vision is already deteriorating to see things that are not real.

She said: “I was already struggling to come to terms with losing my sight. I felt really insecure and embarrassed. I'd always been an independent person, a free spirit who loved socialising – but suddenly, I didn't even know how to talk about what was happening to me."

She continued: “When the hallucinations started, too, I genuinely thought I was going mad. But then, on hearing I actually had CBS, I burst into tears. I was so relieved that it wasn't my mental health, it was my sight."

Able to see perfectly until her teens, Kirsty had no idea of the ordeal lying in wait for her until she started the new school year in September 2003, aged 13, when she noticed she was struggling to read the board properly.

Seeing an optician, nothing unusual was discovered but, from there, her sight deteriorated.

Kirsty on her 18th birthday (PA Real Life/Collect)

“It all came to a head one day when I was in town getting lunch on my break at school, and my mum walked past – only I completely ignored her," she recalled. “She thought I was being a typical teenager, but it wasn't that at all. I genuinely didn't recognize her.

“The only way I can describe my vision by that point is that I could make out shapes, but none of the detail – like when you're driving and can see a sign coming up, but can't read what it says. So, I knew a woman had walked past, but couldn't see her face well enough to know it was Mum."

Returning to the optician, Kirsty was referred to a specialist eye clinic for a string of tests, leading to her diagnosis of Stargardt disease which, according to the Royal National Institute of Blind People (RNIB), is caused by a faulty gene and affects a light-sensitive part of the retina, known as the macula.

In turn, this affects the central detailed vision, used to look directly at something, which begins to deteriorate, becoming blurry and distorted, often causing issues with color perception and reading or recognizing faces.

“It's so rare that you'd never spot it unless you knew what you were looking for," said Kirsty. “After my diagnosis, my family were determined for me to still be proactive and not let it change me.

“I tried my best to be positive, but inside I was terrified. I had no idea what would happen, or if I'd end up completely blind."

When the hallucinations started, too, I genuinely thought I was going mad. But then, on hearing I actually had CBS, I burst into tears.
Kirsty James

In the years that followed, Kirsty's sight continued to weaken but, keen to maintain her independence, she left home aged 16 to live on her own. But, aged 20, in 2010, the hallucinations began.

She explained: “My place overlooked a cobbled street. I remember looking out one night and seeing loads and loads of cars. I thought it was strange, but I didn't have anyone to confirm it with.

“Then, a few weeks later, I was in my living room when I suddenly saw a figure standing there. I shouted, 'Hello?' but as quick as it had appeared, it was gone. I was incredibly shaken up."

Soon the disturbing visions were happening more frequently, as Kirsty would see things such as “kaleidoscopes of color," or imaginary water on dry ground.

Frightened people would think she was “mad", she kept her alarming visions to herself until she met Tom in 2011 and found the courage to confide in him.

Adding to her growing despair, at around the same time, she completely lost her central vision – something she had been dreading since her Stargardt disease diagnosis.

Kirsty and Tom when they met in 2011 (PA Real Life/Collect)

“I had been struggling more and more, and finding I couldn't do as much alone as I once had," she said. “I'd go shopping and swear I'd bought something, only to come home and realize I'd either misread or hallucinated the label and it was something completely different.

“Then, when I was with Tom, I remember waking up one morning, looking out of my window and stopping cold. I suddenly realized I could no longer see the church door across the street that I used to look at all the time.

“My central sight had finally fully gone. I knew then it was time to accept I needed help – but that in itself was so hard. My life had changed virtually overnight. But Tom was incredible. He didn't try to fix the problem – he just listened."

Tips for coping with CBS hallucinations

  • Reach out towards the hallucination, try and touch it or sweep your hand to brush away the image.
  • Shine a torch upwards from below your chin in front of your eyes (not into the eyes).
  • If sitting, try standing up and walking around the room. If standing, try sitting.
  • Walk into another room or another part of the room.
  • Turn your head slowly to one side and then the other. Dip your head to each shoulder in turn.
  • Stare straight at the hallucination.
  • Change whatever it is you are doing at that moment – turn off/turn on the television/radio/music.
  • Change the light level in the room. It might be the dim light that is causing the hallucinations. If so, turn on a brighter light – or vice versa.
  • Blink your eyes once or twice, slowly.

With Tom's unerring support, Kirsty went back to see her consultant at University Hospital of Wales, Cardiff, who confirmed she had completely lost her central vision.

Next, she was referred to an optician to be fitted for some magnifying glasses and, during her appointment, CBS was mentioned for the first time.

She said: “I was doing the test where they make you read a board and, suddenly, the optician asked if I had heard of CBS, saying he thought I may have it."

Kirsty when her sight stabled and she was told it would not get any worse (PA Real Life/Collect)

She added: “I asked why and he said, 'What you've just read is completely different to what the board says.' I then told him about the hallucinations, and it was clear I had CBS. I cried with relief – I genuinely thought I had been going mad."

According to Esme's Umbrella, a campaign group working toward greater awareness of CBS, the condition can develop in anyone of any age who has lost over 60 per cent of their eyesight from any of the eye diseases, cancer, an accident, stroke or another condition like diabetes.

The hallucinations will be sharp and clear, and will range from patterns and people to animals, water, fire and even gremlin-like creatures, whilst the sufferer's normal vision is blurred, hazy or partial.

What is Stargardt disease?

  • Stargardt disease is sometimes called a juvenile macular dystrophy as it can first appear in childhood. However Startgardt disease can also begin later in adulthood.
  • At first Stargardt disease will make your vision unclear or blurry. Things may sometimes appear distorted or wavy.
  • You can have problems with your central, detailed vision which can make activities such as reading and recognizing faces difficult. Your color perception may also be affected.
  • If you've had Stargardt disease for a number of years then you may have a blank patch in the centre of your vision. This blank patch will not move and will always be in the very centre of your field of vision.
  • Stargardt disease doesn't usually affect other parts of your retina so your peripheral or side vision is not normally affected.
  • Stargardt disease can also cause problems with light, such as glare and difficulties adapting to changing light conditions.

The NHS cites the main cause of CBS to be the brain's reaction to loss of vision – something which Kirsty identifies with, saying: “To me, it's almost like my brain can't quite figure out what it's supposed to be seeing, so it fires off random images to find one that fits."

While Kirsty's sight loss has now stopped getting worse, she still has no central vision, so can can make out shapes but not details.

She said: “Out of my two conditions, CBS is by far the most difficult to live with. I struggle especially with faces. I can't distinguish if someone is male or female until they talk and I'll even sometimes hallucinate the faces of people I used to know when talking to someone new."

She added: “It can be really exhausting, especially when I know, logically, the person I'm seeing isn't the person I'm actually talking to. I can also see things like cars and lorries that aren't there, or the floor will look almost watery. The visions can change too, especially if I'm seeing something that wouldn't ordinarily be there.

“For example, my friend brought a big speaker over the other day and put it in my living room, but, because my brain couldn't recognize what it was, it was switching between things like a lawnmower, then a huge box."

Now, Kirsty, who has a six-year-old Black Labrador guide dog, Bass, to help her cope day to day, is determined to raise awareness of CBS and works alongside both the RNIB and Esme's Umbrella.

Kirsty and Tom on their wedding day with Bass (PA Real Life/Collect)

She continued: “My main drive is to help others. To anybody out there experiencing these hallucinations – don't suffer in silence. Talking helps rationalize it and there is support out there.

“Dealing with this has been incredibly difficult. There have been times where I've been housebound with depression and anxiety, questioning how resilient one person can be, and how much they can take.

“But I know I had to hit rock bottom to come back up, and almost get through that grieving process, because of my failing sight, so I could keep going and help others."

RNIB's sight loss experts can provide practical and emotional support. Contact the RNIB Sight Loss Advice Service on 0303 123 9999 or visit www.rnib.org.uk and for information on CBS visit www.charlesbonnetsyndrome.uk

We're all self-conscious about something, and it doesn't help when our faults get thrown in our faces. You don't want doctors hinting that something is "weird down there," nor do you want someone to tell you you're balding. WE KNOW.

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

Giphy

Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

Giphy

Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

Giphy

I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

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I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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