Thursday, 24 June 2021

How I coped with losing my schizophrenic son

How I coped with my son's death after his schizophrenia diagnosis

A MOTHER whose son died after being diagnosed with schizophrenia has shared his story in a book to help others affected by mental illness.

Gill Mann, a former trustee of the Riverside Counselling Service in Henley, will donate proceeds from sales of A Song Inside to the charity as well as national charities Rethink and Sane.

The book tells how her 22-year-old son Sam Roberts became increasingly ill in his late teens and was hospitalised three times because he could no longer look after himself.

He struggled to cope with his medication, which had unpleasant side effects.

The former Henley College student gradually improved and was pursuing a career as a massage therapist when he took an apparent fatal drug overdose while travelling overseas.

His death was probably accidental as Sam had plans for the rest of the trip and was in good spirits when he chatted to his mother on the phone only days beforehand.

Ms Mann, a former solicitor who retrained as a psychotherapist when her son was a child, recorded her thoughts and feelings in a diary over the years after her son’s death.

She showed this to a friend who had lost a loved one in similar circumstances and who found it to be a great comfort and said it ought to be published.

The book begins on the day police told Ms Mann that Sam was dead, then works backwards to explore his struggle while also celebrating the happy times he shared with his family and friends.

Its title comes from a passage in which his mother reflects that “you are a song inside me now, a melody that stirs and bursts into life when I think of you”.

Ms Mann, who is still a legal advisor to Riverside, said: “I never set out to write a book but I’ve always kept journals and the process became a ‘conversation’ with Sam.

“It was a huge part of my grieving and trying to make sense not only of his death but the final years of his life. My friend said reading it was like having someone holding her hand so I went on writing courses to help give it structure.

“I didn’t want to make money for myself but as well as helping others, this book will support three very important charities while raising awareness of schizophrenia and hopefully destigmatising it.

“I wanted readers to get to know Sam as a person and see the human behind the label. It makes difficult reading at times but it’s not depressing, just honest and quite moving.”

The book also charts her grieving process over the years after Sam’s death, which she says is timely as many people have lost loved ones during the coronavirus pandemic.

Ms Mann recalls her son as a “very funny, very challenging little chap” who was fiercely independent, pushed boundaries and looked at life in a creative and unusual manner from a young age.

She said: “He was a joy because he was always so funny and impossible to second-guess. He had to do everything his own way, even if it meant learning some painful lessons.

“Underneath it all, he was highly sensitive and felt things very deeply but he was always popular, always had friends and was a very busy child who could never sit still for long. He was incredibly bright but he didn’t always apply himself or see the point in trying at school.”

Sam struggled academically and was diagnosed with dyslexia at age 13, then attention-deficit hyperactivity disorder shortly after he enrolled at the college to study history, drama, philosophy and psychology.

Without the timetable he had in secondary school, he found it hard to manage his schedule or travel independently.

Ms Mann said: “His philosophy tutor told us he was a brilliant thinker who held things up to quite a different lens from everyone else.

“They said he should have been born in an earlier era, when he’d have been free to follow his own interests.

“He had a fantastic sense of humour and if he laughed, everyone else in the room would join in because he had such an infectious energy.”

Sam passed his AS-levels in his first year.

However, he also became obsessed with the “purity” of food he was eating, cutting out anything he felt wasn’t “clean” and insisting on eating only organic produce.

On a family holiday in 2010, he ate only packaged salads because he didn’t trust the food at the hotel where he was staying with his mother and father Simon Roberts, who were separated but remained on good terms, his sisters Rosy and Ellie, half sister Imogen and his parents’ new partners.

Sam also got sunburned after refusing to wear sun cream, fearing it contained dangerous chemicals which would make him ill.

Back at college, he lost all his motivation and walked out of his
A-level exams. He promised to resit them but declined whenever the opportunity arose and refused to see a doctor despite his family’s pleas.

In 2010 and 2011, he travelled abroad by himself, falling into the company of homeless drifters. When he returned to his mother’s house he became lethargic and refused to socialise or find a job. He sometimes ate with the family but often did so alone in his bedroom, where he would sleep on the floor.

He became obsessed with unusual religious and spiritual ideas and seemed unnaturally happy at times and not to care about how little he was achieving.

Sam’s parents were worried but doctors wouldn’t intervene as he wasn’t sick enough and advised “watchful waiting”.

Ms Mann considered hiding his passport to stop him travelling again but was frightened of betraying his trust and driving him further away.

His parents booked family therapy sessions in a bid to improve communication with him but Sam refused to go, saying he didn’t see the point.

On a rainy afternoon in 2012, he was found wandering along the central reservation of the A4 near Sonning in a dazed, incoherent state.

He was “sectioned” at the Prospect Park psychiatric unit in Reading and diagnosed with schizophrenia, which has a wide range of symptoms but in his case included severe psychological detachment from the outside world.

He wasn’t hearing voices or suffering from delusions, which happens to some people, but his thoughts were so jumbled that he spoke in fragmented sentences which even his mother couldn’t understand.

Ms Mann said: “Sam always had a unique outlook on life and when things started to go wrong, it wasn’t clear whether he was becoming a more extreme version of the child we knew or something worse.

“As a parent, you hope for the best and don’t want to consider alternatives but I’d started keeping a diary of his behaviour because it was so unusual.

“In the end, he was so obviously ill that I couldn’t keep telling myself he was just dehydrated or confused from travelling.

“Sam was still himself some of the time and could be coaxed out of his room to eat with us but he just couldn’t understand why we were worried. It’s hard to admit, but part of me was glad when he was sectioned because I hoped the professionals could finally make sense of the situation and turn it around.

“It was painful because he felt betrayed by us and didn’t think he needed help, which is often a symptom of the illness.

“No one would readily ask a stranger to take their child away and lock them up in an unfamiliar place but the situation was desperate and we couldn’t cope any longer.”

Ms Mann hopes her book will dispel the common misconception that people with the illness are aggressive or a danger to others. In fact, studies have shown that sufferers are far more likely to be victims of crime because they are so vulnerable.

She said: “I’d become a therapist because I wanted to understand people but Sam’s experiences were so extreme that I couldn’t even begin to make sense of them.

“He could sit wearing only a singlet on an icy day with the window open or eat big handfuls of dried chilli flakes while seemingly feeling nothing. It was so far beyond what I’d worked with and I couldn’t possibly have stayed emotionally detached. I always approached it from a mother’s perspective, not a psychotherapist’s.”

In 2012 and 2013, Sam spent months in hospital, usually after stopping his medication because it made him feel lethargic and he struggled to accept he needed it.

On one occasion, he tried to take his life because he felt he had lost all his freedom.

He eventually found a treatment which he could tolerate and was discharged to live independently in supported housing, where he continued to show signs of stability.

After about nine months, he enrolled on a massage training course and then flew to Thailand on an exploratory trip in April 2014 and never returned.

The following month, he was found dead in the hut he was renting in a small village in the north of the country.

In his final conversations with his family, he said he had hired a moped and was looking forward to exploring the area. Sam was cremated in a Buddhist ceremony in Thailand and the family attended. Ms Mann said: “We can never be sure what happened but if he’d meant to take his life, I doubt he’d have made so many other plans. I hope his story will educate people about schizophrenia because it’s a big unknown for many.

“It’s disconcerting, unsettling and uncomfortable because there’s a real ‘otherness’ about those who are going through psychosis but I want to explain that it could happen to anybody.

“We were very lucky that Sam had continuity of care from a psychiatrist who took the time to get to know him throughout his hospital stay, which is really important but doesn’t always happen.

“Sam always hated his medication because it’s a ‘chemical cosh’ which did the job, but with a lot of other effects on his wellbeing.

“There needs to be more research into treatments as they haven’t improved for decades.

“The condition gets such little funding compared to other illnesses and while the cause isn’t as obviously compelling, schizophrenia is devastating and affects one in 100 men and women worldwide. Despite that, you hardly ever hear about it on the news except when someone with it tragically harms another person. In reality, that’s very rare and is such a small part of the story.”

A Song Inside costs £12.49 in paperback or £3.99 digitally. To order a copy, visit
gillmannauthor.co.uk

More News:

POLL: Have your say