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| Encephalitis: 'Friendly fire' in my brain saw me sectioned in error |
"At one point I really
thought my life was over, I was so depressed," Lucy says. "But
somehow I managed to turn it around - I was so unlucky, but at the same time
I'm so lucky to have persevered."
Lucy was in her final year
studying criminology at the University of Leicester in 2016 when she became ill
and underwent a complete personality change.
"Over the period of about a week, my behavior did a complete 180," the now 25-year-
old says. "I went from being bubbly, lively, and social to being completely depressed and crying all the time.
"I would say 'I'm fat, I'm
ugly. Nobody likes me, I don't have a boyfriend, I'm going to fail my degree -
it was all things I'd never cared about before."
In the early hours of one morning,
Lucy's housemates were woken by her screaming. They took her to the hospital and
were told she was experiencing panic attacks caused by stress. They gave Lucy
breathing exercises and sent her home.
But the following morning she
began screaming again.
"I was rocking back and forward, my
eyes were completely dilated and I had torn my bedroom to pieces," Lucy
says. "I only have vague memories and flashbacks of this period.
"My mum and dad drove down and when
they found me they were horrified - they were asking my housemates 'Has she
taken drugs or is there any chance she's been spiked?' and they told them: 'No
chance."
Lucy's parents bundled her into their car
and drove to the hospital. During the drive, her behavior became so erratic she
attempted to jump out of the moving vehicle.
Once at the hospital, her parents were told she
was experiencing a "mental breakdown" and needed to be detained under
the Mental Health Act. She was placed in a psychiatric ward, where she would
remain for three months.
Lucy was treated with antipsychotic drugs
but her condition rapidly declined.
"I was extremely ill and seeing
hallucinations, and then parts of my body and my brain started shutting
down," she says. "I had become catatonic, which is where you're in a
rigid stupor and you can't feel your own body."
Medics were baffled by her deterioration.
On her 21st birthday, a month after she was admitted to the hospital, doctors told
her parents she would have to undergo ECT (electroconvulsive therapy) or she
would die.
Lucy underwent three rounds of the
treatment which involved sending an electrical current through her brain using
two padded electrodes placed on her temples to trigger a seizure. The procedure
is given under general anesthetic.
For Lucy, the treatment "sort of shook
my brain into resetting" and stopped the illness from progressing.
"But unfortunately, that's not where
it ended," she says. "Because after the ECT they put me back on my
ward and I was left alone."
For Lucy, the treatment "sort of shook
my brain into resetting" and stopped the illness from progressing.
"But unfortunately, that's not where
it ended," she says. "Because after the ECT they put me back on my
ward and I was left alone."
Lucy was in bed but was still having
seizures. That November night she started to fit and fell from the bed onto an
exposed radiator pipe, which was extremely hot.
"I was catatonic so I didn't feel
anything. I just laid on it burning, until someone found me."
Lucy's parents were told she'd "had a
little fall" but the extent of the burn's damage wouldn't be discovered
until months later when she was learning to walk and talk again.
"It was actually a third-degree burn,
all the way through my left bum cheek."
Just before Christmas 2016, Lucy was discharged from the psychiatric unit.
But it wasn't until January the family
finally received a diagnosis of Lucy's illness. She hadn't experienced a
mental breakdown - she had, in fact, had encephalitis, a rare but serious
inflammation of the brain that can be fatal if not treated quickly.
It is sometimes caused by viral infections
or by the immune system mistakenly attacking the brain, known as "friendly
fire", which is what Lucy experienced.
It can be difficult to diagnose, as
symptoms can develop over hours, days, or weeks, and include confusion or
disorientation, changes in personality and behavior, difficulty speaking, and
loss of consciousness.
Encephalitis can damage or destroy nerve cells (neurons) and this damage is
classed as an acquired brain injury.
Survivors often experience completely different outcomes.
A Lincolnshire Partnership NHS Foundation
Trust spokeswoman told BBC Ouch: "We are truly sorry for any care that
fell below our expected standards and the impact this has had on Lucy and her
family.
"We are committed to delivering high
quality, safe patient care and have a robust internal investigation process in the place to learn lessons for the future."
When Lucy returned home she was sleeping 23
hours a day as she recovered.
"I had to learn everything again from
scratch, learn to talk again, learn to walk again, I couldn't read or write and
I was absolutely devastated."
Luckily for her, her grandfather, a retired teacher, decided to take an active role in her recovery.
"My favorite singer is Elvis Presley,
so my grandpa bought every single Elvis songbook off the internet and learned
how to play them all on the keyboard," she says. "That's how I
learned to speak again - by singing along to the songs."
But she was still struggling to walk and
her mental health was suffering.
"I watched all my friends graduate on
the live stream on Facebook and I really thought my life was over," she
says. "I was so depressed, and I said to my family 'I wish I had never
woken up."
A year after she was discharged, Lucy
finally discovered why she was still struggling to walk.
The burn sustained on the radiator had gone
through her sciatic nerve, permanently paralyzing her lower leg.
Although this was a devastating revelation,
knowing what the issue was meant Lucy and her family could move forward.
Between singing, daily word games, and
walking short distances with a frame, Lucy recovered to the point where she
could return to university and finish her criminology degree.
Following her graduation, Lucy, who now
wears a splint on one leg and uses a walking stick, attended a casting for
Zebedee model management and was signed up.
Lucy's modeling career took off and she
always likes to flaunt her collection of colorful and sparkly mobility
aids, which she hopes will help increase the representation and visibility of
disability in the media.
She has so far worked with brands including
Ann Summers, Love Honey, and Missguided.
"I don't feel any shame about posing
in lingerie," she says. "Disabled and sexy aren't two mutually
exclusive terms.
"But you very rarely see any disabled
people in fashion campaigns let alone lingerie campaigns, so that's something
we need to keep working towards."
Lucy hopes to continue increasing the
visibility of disability and raising awareness of encephalitis and was a winner
at The Role Model Awards 2019 for her campaign work.
"Who knows what the future
holds," she says. "If my experience has taught me anything, it's that
you really can't plan out your life."
The source: BBC News
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