Suzy Owen is opening up about her experience contracting a rare brain bug that wipes her memory.
Owen started having headaches in the spring of 2017. She thought nothing of them, but was proven wrong.
Life changed in an instant for Owen, her husband Paul, and their boy Charlie, after a seizure in the street on May 16 led to a diagnosis of encephalitis – a rare but serious inflammation of the brain, usually occurring when the immune system attacks itself in error.
Paul remembers calling his wife, who was out with their son, only for a paramedic to answer her phone.
“I had been at work, doing some training, and got out my phone when I finished to call Suzy and tell her I was on my way home, like I usually did," he said.
“A paramedic answered and told me she had collapsed in the street, and was having seizures. At first, I thought it was some sort of horrible prank, but I soon realized it was very real."
Family swooped in to take care of Charlie, as Owen was raced to St Peter's Hospital in Chertsey, where Paul joined her.
Owen was diagnosed with encephalitis in the early hours of the next morning. And, was later placed in an induced coma for three long months, to help her body to recover.
Coming round to find her long-term memory had been severely impacted, she had lost all recollection of the two most important events of her life, her son's birth and her wedding day.
Owen continues to have daily seizures and stopped her 24/7 care six months ago.
“It breaks my heart that I can't remember my wedding day, or giving birth to our beautiful son and having my first cuddle with him," she said.
“It is so hard to describe, but I would look at photos and feel no emotion, as I couldn't remember them being taken. It was like looking at somebody else's life."
Owen was transferred from her local hospital to the more specialized St George's in Tooting, south west London, the day after her official diagnosis. But, she cannot remember her many months on a ward. However, Paul remains haunted by seeing his wife so ill.
She is one of 6,000 people a year in the UK diagnosed with the brain bug, according to the charity Encephalitis Society. Some symptoms include drowsiness, loss of consciousness, aversion to bright lights, inability to speak, uncharacteristic behavior, hallucinations, sleep disturbance and neck stiffness.
“Suzy was still having seizures, and doctors became very worried about brain damage, as they were so severe," Paul said.
“They put her into an induced coma to try and manage them and give her body a chance to fight."
Owen cannot pinpoint exactly when her memories leading up to her ordeal stop and still does not know what caused her to develop encephalitis. She says the first thing she can remember clearly is coming round from her coma, after three months.
“My memory is a total blank before that. The first thing I can clearly see in my mind is waking up in hospital, with no idea where I was, or what had happened," she said.
Remaining at his wife's side whenever possible, Paul visited every day, but says Charlie was too young to fully understand what had happened.
“It was very difficult. All our lives changed overnight. I had to be both Mum and Dad to Charlie, who became very clingy," he said.
“Because Mummy had disappeared and he didn't know why, he really latched onto me. I tried to explain to him that Suzy was in hospital and doctors were doing their best, but he was still so young, he didn't really get it."
“When Suzy did eventually come round, it was clear we had a long way to go. She was incredibly confused and would even hallucinate. I remember going to visit her once and her asking me directions, because she thought she was driving a car."
Discharged from St George's at the end of August, Owen was then transferred to the Bradley Neurorehabilitation unit of Woking Community Hospital, where she had physiotherapy and occupational therapy.
Finally allowed home in September, she still required around the clock care, since at first, she was unable to even feed or wash herself.
“I called it Suz sitting," she explained. “Paul, or one of our family members, would have to be with me at all times."
“Not only did they have to help me with everyday tasks, but they'd also need to make sure I was safe, as I was still having seizures up to four or five times a day," she said.
In time, Owen regained her cognitive abilities and no longer needed such intensive care.
Thankfully, she was still able to walk and talk but, gradually, it became clear that her memory had been severely impacted.
“It was both long and short term," she explained. “It wasn't apparent right away, as it took time to work out what I couldn't remember."
“I knew who Charlie and Paul were to look at. And Paul said that, when I first came round, although I wasn't lucid, he could see a glimmer of recognition in my eyes."
“But I couldn't remember much before I became unwell. I had no memory at all of my wedding day."
“Sometimes, I'd think Charlie was much younger – around six months, not three. I had absolutely no recollection of the day I gave birth, or things like our first cuddle together," she continued.
“For so long, the phrase I repeated the most was, 'I can't remember.' It pained me having to say it. It's heartbreaking not to be able to remember these things, that are huge parts of my life."
Owen's loved ones did try to show her photos of key events, but stopped as she clearly found it upsetting.
“It wasn't as simple as showing her a picture that would jog her memory. The neurons and pathways in her brain were damaged," Paul said.
Fortunately, Owen still continues to make gradual progress.
She can now take a walk by herself and can feel her seizures coming on, so has enough warning to get to a safe place.
“They feel almost like déjà vu or an out of body experience," she said. “I keep notes too about what each seizure was like, how long it lasted and so on, so I can show my doctor and keep track."
“My short-term memory is, thankfully, getting better. I still need to do things like write myself notes and set alarms on my phone, but I'm starting to notice that I know what they are for when they go off now. Keeping to a set daily routine really helps, too."
Although Paul accepts that his wife may never retrieve her memories of some of the happiest moments they have shared, he is delighted that she is still alive and he has vowed to support her every step of the way.
By speaking out, the couple want to thank the Encephalitis Society and their family and friends, for their support during their darkest hours.
Owen feels positive about the future and wants to raise awareness of the condition and give hope to other people whose lives have been touched by it.
“I can't praise Charlie and Paul enough for being there throughout this horrible time. Our wider family, and the NHS, have also been incredible," Owen said.
“Charlie is only six, yet he's so intuitive and mature. He knows that, if I have gone a bit quiet, to come and check on me. He also knows exactly what to do if I have a seizure."
“We may not be back to normal yet, but, as a family of three, we have re-forged an unbreakable bond."
“I want to tell other people recovering from this condition, like me, that it's okay to have good days and bad days. You might get frustrated, but be patient. What may feel like small steps are actually giant leaps, so never give up on yourself," she said.
“I may have lost precious memories, but I am still lucky, as I have time to make new ones."
For information, visit www.encephalitis.info
