Lauren Nicklinson was just 18 when her father Tony suffered a huge stroke in 2005. “Everything changed the day dad had his stroke,” she says. “Everything.”
Since then, Tony has been suffering from locked-in syndrome, paralysed from the neck down. He is unable to talk, but his brain is aware of everything that is going on around him. He communicates through blinking, twice for no, once for yes, and blinks at letters on an alphabet board to spell out what he is thinking.
Carers hoist Tony into a wheelchair every day; he doesn’t like people looking at him, so stays in his bedroom in the family bungalow in Wiltshire. He is trapped in his own body.
Tony, 57, is fighting a legal battle for his right to die. He has said, via his alphabet board, that his life is “dull, miserable, demeaning, undignified and intolerable”. Tony wants a doctor to end his life for him, without being charged with murder. Earlier this month, the legal case made landmark progress: a high court judge ruled that Tony’s right to die case can proceed, meaning there will be a full hearing.
Seven years ago, the Nicklinson family’s life was completely different. They lived happily in Sharjah, where Tony worked as an engineer and his wife, Jane, was a nurse at Al Zahra hospital, where Lauren, now 24, was born.
“We spent much of our childhood and teenage years in Sharjah, and we absolutely loved it. We had a busy, cosmopolitan life. Before Sharjah, we lived in Abu Dhabi, and before that, Malaysia and Hong Kong,” says Lauren. “Life was very different to how it is now.”
Lauren was studying for her A-levels when her father suffered his stroke while on a business trip to Athens. Tony’s youngest daughter, Beth, was 16 at the time, preparing for her GCSEs. “My dad was a cool dad,” says Lauren, who speaks of her father in the past tense. “All my friends loved him – he was loud, talkative and had a great sense of humour. I’d rather think of him as he was then than as he is now.”
A phone call from Tony’s colleague broke the news. “Mum took the call and shut the door and I immediately knew something was wrong,” says Lauren. “She came back and told me she had to go to Greece because dad had had a stroke. I don’t remember much, but I was shaking and I lost my balance. I was scared.” Beth started to cry.
When Jane left for Athens, the Nicklinson’s circle of UAE friends stepped in to keep an eye on Lauren and Beth and help them focus on their exams. “I think everyone else knew just how bad the situation really was and tried to protect us from that,” says Lauren. “But then I read an email on our home computer and found out that he was on a ventilator, and that if he survived he would be very disabled. I couldn’t process it.”
Lauren decided to join her parents in Athens. “We made a conscious decision to protect Beth as much as we could, so we told her dad was fine, just not stable enough to come home. But when I got to Athens, and saw him in hospital, swollen and sweaty, I just ran out again. I sat on the hospital floor and started to cry.”
Later, Lauren noticed her father blinking when a nurse asked him a question; she realised the blinks were his way of responding. After two months, the family secured a place for Tony at an NHS hospital in the UK, which marked the Nicklinson’s final departure from life as they had known it in the UAE. Lauren started university and Beth started college.
“Life goes on, and dad would not forgive himself if we lost our futures,” says Beth. “Mum encouraged us to make friends and settle into a new life.”
Tony says he does not want to die now, but wants to know he can call upon a doctor to end his life when he is ready to. He says he wishes the doctors in Greece had never saved him.”Mum called me one day at university in tears. She said: ‘Your dad asked me to kill him’. I didn’t know how to handle it. But I also think I could see it coming,” says Lauren. “As a family we’ve accepted what dad wanted a long time ago and I’m more desensitised to it now. It’s not fair that he doesn’t have the right to choose what he wants to do with his own life just because he is not able-bodied. He’s been like this for seven years, and I don’t want him to have to suffer for another seven.”
Lauren and Beth both say that to a certain extent, they have already grieved for their dad. “We miss who he was, but it’s 10 times worse for dad than it is for us,” says Beth. “We will always support him.”
Lauren and Beth have moved forward with their lives (Lauren now works in PR while Beth is at college) while supporting their parents. Lauren says she does not know what will happen next in the family’s court battle, but she cherishes her memories of Sharjah, of life before Tony’s stroke.
“Some of our happiest memories are of the Sharjah Wanderers sports club,” says Lauren. “Dad was the chairman and mum was the secretary and we were there nearly every evening. I miss everything about the UAE: the weather, the cosmopolitan feel, the fact that there’s so much going on there. Every time I go back, it feels like going home; it was home. I would never leave mum and dad now, but if things were different, I would be there in a heartbeat.”