Neil Smith Encephalitis

Neil’s story: how encephalitis turned his world upside down

Clare Smith joined ‘the Loop’ as Northern Life’s accountant just over two years ago and has proven herself to be a valuable and much-loved member,…

Clare Smith joined ‘the Loop’ as Northern Life’s accountant just over two years ago and has proven herself to be a valuable and much-loved member, we’d simply be lost without her. Happily married to Neil, they live with their three children Sophia, Jack, Marc and family dog Molly. All was going relatively well, until one morning I received a text from Clare explaining that she couldn’t make it into work. Her husband Neil had been rushed into hospital, her parting comment was, ‘I don’t know how this is going to pan out!’

Neil Smith. Photo by Alex Cowland
Clare and Neil Smith with Molly the dog

Life can be incredible, it can lift you to the dizzy heights of sheer elation and then drop you like a hot brick into the jaws of tragedy. It’s not what happens to you in life, it’s how you deal with the cards you’re dealt, and recently Neil Smith, aged 44 from Colne was dealt a seriously bad hand.

Our story starts when Neil was admitted for a spinal operation on December 13th, 2018: an operation Neil was familiar with as he’d undertaken it twice before. After coming round from the general anaesthetic, Neil immediately knew something wasn’t right. It was his third operation, but this time he discovered he was sensitive to light and was suffering from a severe migraine, something that had never happened before.

Days after being discharged from Preston Royal Hospital on the 27th December, Neil visited the nurse to have his staples removed, and after examination, the nurse discovered a lump on his scar and advised him to contact his consultant.

The next day Neil was readmitted to Preston Royal, at this point his temperature had gone up significantly and after blood tests it was revealed that Neil had a spinal leak and had also contracted meningitis due to having a low immune system. He was immediately prescribed medication to assist with the meningitis and advised to lay flat for a few days in order to enable the spinal leak to ‘settle down’.

Neil’s new year was spent in a hospital bed and on January 7th he was operated on to repair the spinal leak by consultant Mrs Donaldson Hugh, who despite just returning from holiday insisted that she would undertake the operation herself, making Neil her priority, as always. Three weeks later Neil was discharged and after six weeks in hospital was overjoyed to be home. Unfortunately, his joy was to be short lived and, on the 3rd February, two days after finishing his meningitis medication, is when Neil’s story takes a dark twist.

His wife Clare had gone to bed and was awoken by screaming and yelling followed by loud banging. “I ran downstairs to find Neil on all fours smashing his head against the radiator,” said Clare, “he was in agonising pain and in sheer desperation had begun banging his head hoping his headache would subside. “He dragged himself to the hallway and after curling up in a ball, managed to fall asleep.” Clare didn’t want to leave him so slept nearby on the stairs until Neil awoke in the early hours and made his way to bed.

The wardrobe doors had been ripped off, the bedding had been tossed out of the window and Neil was naked bouncing up and down like a Tasmanian Devil

Neil Smith. Photo by Alex Cowland
Neil with Molly

Two hours later, Clare was on the phone to the emergency services. Neil was extremely distressed, aggressive, and was destroying their bedroom. The wardrobe doors had been ripped off, the bedding had been tossed out of the window and Neil was naked bouncing up and down like a Tasmanian Devil. It took three paramedics and two police officers around an hour to eventually calm him down.

Neil’s violent, sudden outburst was completely out of character and it was especially terrifying for Clare and the kids, it’s a bitter memory that they’ll never forget, however, Neil has no recollection of the incident at all.

His only memory of the event is wanting to escape the house. “For whatever reason, I can remember looking at the big copper stood in the doorway thinking, ‘If I can get past him, I can escape!”’ chuckles Neil. “I was stark naked and just wanted to get out, believing that maybe if I could get out of the situation my headache may disappear.”

Luckily for Neil, there was no chance he was going to ‘escape’. He was promptly admitted back into hospital where he lay unconscious for three days.

After regaining consciousness and after CT scans, further blood tests, MRI scans and lumber puncture it was confirmed that Neil was suffering from encephalitis, an inflammation of the brain caused by the immune system affecting the brain. There are around 6,000 cases in the UK every year. Symptoms vary depending on the type of encephalitis related antibody, but they can include confusion, altered personality or behaviour, psychosis, movement disorders, seizures, hallucinations, memory loss, or sleep disturbances. After months of being in and out of hospital, Clare remembers how relieved they were to actually have a name for the illness that was, ‘slowly chipping away at both their lives’.

Although, Neil was unaware how close to death he came, yet, one recollection he vaguely remembers is telling Clare that he could ‘smell death on his pillow’, “It was a sickly sweet stench,” he insists, but luckily for him and his loved ones he pulled through and was discharged two weeks later.

Now, for those of you not familiar with ‘our Clare’, she’s fastidious, dogmatic and relatively bright (ok, very bright) and immediately started researching the disease and how together they could combat it. That’s when Clare discovered The Encephalitis Society, “Without them, we’d have been nowhere, it was a real turning point for me. At last someone understood what we were going through,” smiles Clare. “They talked me through any concerns, it was like a light going on. Before speaking to them, I felt helpless. I wanted to be able to help the man I love, and thanks to them, now I can.”

At that point Neil was incredibly emotive. “Neil was having mood swings, one minute he’d be crying, the next, angry. At points he was also hyperactive, he’d literally be bouncing off the walls. It was very tiring for all concerned,” sighs Clare.

Neil recovering in hospital
Neil recovering in hospital

The disease can accentuate certain traits the person had prior to contracting encephalitis, Neil, laughing, readily accepts that he’s always been slightly OCD, but just days prior to his outburst Neil had been constantly on to his TV and web supplier with the aim of getting his bills down, he was ringing multiple times a day, and only now, in hindsight do Neil and Clare believe that this was likely an early sign that encephalitis was rapidly spreading throughout his body. “It wasn’t just one call, he was intense, verging on obsessive,” says Clare, “I just thought he was busy occupying himself, after his stay in hospital.”

On the upside, Neil did manage to slash their monthly bill by half!

Encephalitis has had a huge impact on them all. The left-hand side of Neil’s brain has vestibular damage between the inner ear and eye and this, in turn, has affected him physically and mentally. He admits to struggling to keep focussed at times and more prone to ‘daydreaming’, he feels like the lefthand side of his brain is fighting to get out. Clare intercepts, “The encephalitis has damaged his connections and that part of the brain is responsible for making him feel disconnected from the world, I can almost see him disappearing into his own thoughts.”

Neil likens the experience to the film, The Truman Show, the main character Truman Burbank is a man whose life is a fake one. The place he lives is in fact a big studio with hidden cameras everywhere, and all his friends and people around him, are actors. But, unfortunately for Neil, his life is all too real.

It’s evident that Neil is still in a huge amount of pain, without realising it instinctively presses the side of his skull with his fist and when he’s not tapping his head he’s trying to relieve his pain by cracking his jaw in a vain attempt to ease the pain. Despite being prescribed a plethora of medications and painkillers nothing seems to be able to take his pain away and since December he’s had a constant headache that stretches down his neck.

I want to get better not just for myself, but for Clare and my family

Most folk would have locked their self away, so I was curious to discover how Neil manages the constant, excruciating daily pain.

“I just try and keep busy,” he answers bluntly. “Don’t get me wrong I’ve been tempted to lock myself away, drink 10 cans of Stella a day and then cry myself to sleep. But that’s not an option, I want to get better not just for myself, but for Clare and my family.”

Neil Smith running in the colours
of Trawden Athletic
Neil running in the colours of Trawden Athletic

An accomplished hill runner, Neil misses his days running for Trawden Athletic, but like any journey on the road to recovery, it takes time and he hopes to soon be back ‘pounding’ the pavement, but for now, he’s happy to settle for regular walks with Molly, the family’s French bulldog. Walking is an essential part of his recovery, and Neil finds it hugely beneficial despite suffering from tinnitus, another symptom of encephalitis.

Neil’s behaviour has changed significantly, if tired, he tends to slur his words and on other days he can be hyperactive and almost child-like. But despite this, he continues to be upbeat and is positive in his approach to his illness.

Through The Encephalitis Society referral Neil now has a smashing group of folks behind him in the form of the Rakehead Community Neuro Rehabilitation Team. Linda Haims is his neuro nurse; Amy Lyons his physiotherapist and Amy Hitton with his speech therapy. Plus Dr Arshad GP and Leedhams Pharmacy.

This lad is made of stern stuff, an MRP for Rolls Royce for over 25 years, Neil is desperate to return to work but is also aware that he has long road to travel down before he returns. Thankfully his employers have been fantastic, offering him help and support throughout the whole process.

Neil is improving, he’s understandably growing impatient with his condition. “I felt there was a massive improvement within the first month of contracting,” said Neil, “however, I feel my progress has plateaued recently.” Clare is quick to disagree and is noticing slight improvements on a daily basis. After returning from hospital, after the onset of encephalitis, Neil was unable to use a knife and fork, which he’s now mastered, however, he still struggles to drink due to damage caused on the left-hand side of his face. Whilst in hospital Neil couldn’t remember how to operate his mobile phone and so unable to communicate with Clare, he created a paper rose made from unused pill containers for her, to show his love and appreciation for his beloved wife. “It almost finished me off,” sighed Clare.

In a sea of uncertainty there’s one thing that stays constant and that’s the love that these two have for each other. Regardless of what life may toss at them this pair will continue to withstand any storm.