A moment that changed me: the loss of my brother to alcohol-related illness | Eve Ainsworth

This year it will be 17 years since my brother died, aged 40. I have so many regrets – regret not only for Kev, who was finally killed by the addiction that overtook him, but regret that I didn’t try to understand him more when he was alive. It is only now that I have begun to appreciate the pain and entrapment inflicted by alcohol addiction and how the man I thought I knew became swamped by this misunderstood and deadly condition. My brother deserved so much more. For so long, I questioned why drink always won, without realising that for him it was never a question of winning or losing. It was just about surviving each day.

One of my earliest memories of Kev was when I was sitting miserable and uncomfortable with chicken pox. I was around five years old and stank of calamine lotion – my entire skin was cracked pink with it. I hated missing school and was bored silly at home. Then my older brother walked into the house, carrying a bag of books. My day suddenly lit up. In my early life, Kev’s long hours as a nurse meant he didn’t often visit, but when he did he brought a different energy to the house, and a kindness.

He was the one who’d take me out for surprise shopping trips, or for weekends away at his house where he and his wife would take me to amazing firework displays and other outings. Kev always seemed full of life – talking, laughing and coming up with ideas. He loved reading and talked about books. He made me appreciate the wonder of words. I didn’t know then that he was working long hours, that he was struggling, and drinking to cope. I just saw the mask he painted on. The happy Kev, rather than the cracks. But of course all cracks deepen in time and the mask begins to slip.

His marriage fell apart and soon his drinking meant Kev was signed off from a job he loved and excelled at. He was forced to move back to our house. That’s when I saw the true problem. I was 10 years old, and I had an older brother who now spent most of his days sitting in his bedroom. His appearance had changed. His face was more red, speech slurred, eyes swollen. We still talked though. He gave me his old computer to type on and encouraged me to write.

Kev didn’t think it was silly that I wanted to be a writer: he actively encouraged me. He talked about the importance of plot structure and leaving the reader wanting more. It was just sad that he didn’t read himself any more. He still listened to music though: to David Bowie, Leonard Cohen and the Clash. He taught me to listen to the words and hear the real meaning. He told me to sound words out loud and hear how they worked. Above all, he told me not to give up on my dreams. He always looked sad when he said that, like he’d already given up on his.

Eve Ainsworth aged 4, around 1982. Photograph: Eve Ainsworth

But as a teenager things changed. I’d changed. I’d become ashamed of him. He’d become bloated and sick and would often do or say things to embarrass or shock people. I’d look at his closed door and imagine a monster behind it, consumed by alcohol, no longer recognisable. I didn’t want to be in his company any more. He frustrated me, and I couldn’t understand why he had chosen this existence. Finally, he moved to a house of his own and I suppose I was relieved. At least now his drinking was contained somewhere else. I could kid myself he was OK really. But he wasn’t. The reality was that he was just getting sicker and sicker.

When I became ill myself, hospitalised with quinsy, I begged my brother not to visit. I didn’t want people to see how bad he was. When I came home, he phoned me. “I’m glad you’re better,” he said. “That should be me in hospital. Not you.”

He collapsed a week later; his liver had finally failed him. I was at work when they made the decision to turn off his life support. I tried to go and see him, but I couldn’t get there in time. Guilt raged through me. I’m not religious but I found myself in a small church, lighting a candle. Praying for forgiveness. Ashamed.

The guilt affected me for a long time afterwards. I resigned from my job. I spent most nights out drinking with friends. I felt like I was lost. One night I drank too much and found myself vomiting in a toilet wondering if this had been what his life was like. I woke up feeling wretched and ill and knew I could never drink to excess again. Even now I struggle being around people who are excessively drunk.

I wish we could have helped Kev. I wish we could have saved him. But we couldn’t

It took me a long time to get over his death and in many ways perhaps I never will. But it changed me because I knew I never wanted to feel like that again. I tried to remember Kev for the man he was, not what the drink made him. And I carried on writing, because I knew then that life was short and cruel, and I had to try and achieve my goals in the time I had. When my first book was published I remembered my brother’s early encouragement and belief in me, and knew how happy he would be.

Now I’m almost at the age my brother was when he died – and that seems wrong somehow. It makes me realise how young he was and how much life he had yet to live. He had so much talent, wisdom and kindness. I wish we could have helped him. I wish we could have saved him. But we couldn’t. And I’ll never stop regretting that. But regrets are wasted. So instead, I just have to be thankful for what he gave us instead.

A few days after he died I had a vivid dream in which my brother appeared in a beautiful, peaceful setting. In the background Bowie’s lyrics played on a loop, like a soothing lullaby – “I’m happy, hope you’re happy too.”

I am happy, Kev. And I’d like to think in some way you are too.

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A moment that changed me: the loss of my brother to alcohol-related illness | Eve Ainsworth

Drugs didn’t work for my brother. Electroconvulsive therapy did | Andrew Mayers

The death certificate said heart attack. But anyone familiar with what my brother had been through over the last decade of his life knew the real cause of death: depression. A self-depleting torment that knew no rock bottom; a psychological tumour that consumed his personality.

Now, looking back after several months on an end that Stephen had said was all he prayed for, I think there was something missing on the certificate: not a cause of death, but a “cause of hope”. That cause was a procedure once derided as the Frankenstein treatment: ECT, or electroconvulsive therapy. Last week it was reported that ECT is on the rise again, with more than 22,000 individual treatments carried out in England in 2015-16.

For some people, this new research will have reawoken old fears of the therapy, and it has certainly brought forth a welter of images of Randle McMurphy, Jack Nicholson’s character in One Flew Over the Cuckoo’s Nest, who was laid impossibly low by the treatment. It’s a context in which my brother’s story needs to be heard.

My brother’s case of depression may well have been “severe”, or “psychotic” or “neurochemical”, or any of the labels used in the struggle to understand his condition. But for me the definitive label was “treatment-resistant”.

Antidepressants, tranqs, sleepers, hypnotics, anxiety meds, CBT, visualisation strategies, talking therapies – my brother, bless him, tried every regime, and stuck to them doggedly even as his symptoms escalated. The efforts of the NHS doctors to find the magic formula, the right balance of millilitres and microgrammes, could not be faulted.

Stephen Mayers, front, a month before he died, with brother Andrew, niece Lola, daughter Sienna and wife Yasmin. Photograph: Andrew Mayers

With every regimen change there would be new flickerings of hope. Patience, the psychiatrists always cautioned – there is never a quick fix. If these drugs do work, it might be weeks, months, before the first inkling. But the lesson of the passing years was that the drugs didn’t work. The darkness engulfing Stephen became a tomb. And it engulfed us all – his wife, his daughters, his brothers, his parents.

So it seemed little short of a miracle when a “last resort” treatment penetrated that malign murk – indeed, blew it away. According to data collected by the Guardian, about 2,000 patients were given ECT in 2011. Thank God Stephen was one of them. A life that had been little more than an extended stupor, enlivened only by the gobbling of stodge, was transformed. The principled, generous, engaged soul re-emerged, as if from hibernation.

The addiction to discomfort eating, which brought only self-hatred, was ousted by a renewed passion for cycling. The old Stephen was reborn. As the writer and professor of clinical psychology Andrew Solomon has sagely noted, the opposite of depression is not happiness, but vitality.

My brother ended up getting four amazing, unexpected years of vitality: not a bad result from a seizure lasting less than a minute, triggered by an electrical current applied for up to eight seconds. All under general anaesthetic. No thrashing, no writhing. Perhaps a little toe-curling.

So if there is anything “crude and controversial” about ECT it’s the reaction, from some corners, to the revelation that these treatments are on the rise again. The portrayals that put this procedure on a par with lobotomy belong to a wholly different mental health era. We all know what happened to McMurphy at the hands of Nurse Ratched, but that was a fictional depiction, decades ago. When the Ramones sang Gimme Gimme Shock Treatment they made it sound like something only the truly twisted would consider. The experiences of Sylvia Plath – who described ECT as “a great jolt [that] drubbed me till I thought my bones would break and the sap fly out of me like a split plant” – or Janet Frame, the New Zealand poet incarcerated in asylums and subjected to 200 treatments by sadistic nurses, are brutal. But if anything they demonstrate how far mental healthcare has come.

‘At his funeral one of his fellow cyclists gave an oration. ‘Steve Mayers, what a guy. Steve Mayers, what a guy. Steve Mayers what a guy.’’ Photograph: Yasmin Mayers

Last week the mental health charity Mind warned that the side-effects of ECT could include memory loss, difficulty concentrating and dizziness. In my brother’s case, these were the side-effects of not having ECT. But I still suspect that the ultimate side-effect of not having the procedure was his death last October.

The procedure had given him four precious years of vitality. In the middle of a cycle ride from Land’s End to John O’Groats – to raise money for the Maudsley hospital, in south London, where his treatment was carried out – his illness returned. The doctors knew – we all knew – that his best chance, perhaps his only chance, was another ECT course. But good medical practice meant that first they had to go through the rigmarole of drug regimes they knew would probably fail.

ECT time came agonisingly closer. His depression raged out of control – worse he said, than ever. And on top of this, even grimmer news: a persistent tremor was incipient Parkinson’s. The catastrophic thinking that was the hallmark of his depression now played a terminal role: the ECT miracle, those four years of vitality? A fluke, a trick, a story. Go under general anaesthetic? What happens if it leaves me conscious but paralysed? And anyway, what’s the point in being liberated from depression into a life ravaged by Parkinson’s?

The years of vitality were not to be repeated. But without ECT they would not have happened. At his funeral one of his fellow cyclists gave an oration. “Steve Mayers, what a guy. Steve Mayers, what a guy. Steve Mayers what a guy,” he intoned in broad Wolverhampton.

At the same time pictures flashed up on a big screen of Stephen on a bike. Forget Jack Nicholson, I thought. My big brother’s the positive face of ECT.

Drugs didn’t work for my brother. Electroconvulsive therapy did | Andrew Mayers

A letter to … My brother, who doesn’t know that I’m a heroin addict

You came to visit me last year. Together we planned your trip. You were to stay at my house – I didn’t even realise that your grown-up form (so much taller and broader now) would be far too long for my short couch.

I came to meet you at the airport. I woke up early so that I could be there, ready and waiting. I imagined standing in arrivals, watching for you to emerge from the crowd. I knew that I would recognise you, even though I hadn’t seen you for many years.

I was late, of course. I’m late for everything now. I used to be so obsessively punctual, anxiously arriving at least half an hour early for appointments, studiously mapping journeys and carefully estimating travel times. But I overslept and then, at the airport, I spent a good 20 minutes in the first bathroom I could find, nervously at first and then gradually becoming less nervous, smoking heroin off the tin foil that I carry with me everywhere I go.

I came out of the bathroom and was calmer and happier and a little bit dozy. I saw you right away. Everything was great. You smiled so wide and hugged me. And everything was comfortably numbed and blurry.

I love heroin. I love it more than I love anything else in this world – more than I ever have loved or will ever let myself love anything or anyone else. My heart is beating so fast as I write this, and my palms are prickling damp with sweat. I’m eight hours without heroin and two hours after methadone.

I love heroin because it numbs me. It gave me just what I needed the first time I tried it, which was the ability to remove myself from my life at last, to remove myself from the self that I loathe so deeply and without reason. When I am high – which is all of the time, now – I can negate everything. Nothing else matters any more. I have chosen to reject prevailing lifestyle norms and the desires, both material and emotional, that come with these norms. I never thought that I could achieve anything anyway, so it is really just me in my 20s, mumbling a neat, easy and lazy “fuck this” as I remove myself from the world and sink into an opiate haze to hide.

Keeping my drug use from you is exhausting and you deserve my honesty, not the lie I present to the world

I meant to tell you, of course. I mean to do a lot of things. A lot of these things are simply forgotten – heroin is very good for forgetting, for removing from conscious thought anything that is not about how much heroin I have right now, or how badly I need it and how much I can buy as soon as possible – but some things, like this, are things that I just cannot bring myself to do.

I wanted to be honest with you. I wanted to start your visit off right, to make you breakfast after your flight and then, when the time was proper, to try my very best to explain to you that, yes, I am a junkie. I’ve got zero money and I’m only just hanging on to a job and I’ve just started on an opiate replacement for the first time. Some days, I do want to stop using heroin; most days, I don’t.

I really wanted to tell you everything. Keeping my drug use from you is exhausting and, more than anyone else, you deserve my honesty, not the duplicitous, multi-natured lie that I present to the rest of the world. I really wanted to tell you, but you’re my little brother. And for some reason you didn’t see the person I have become since we last met; you still saw me as your big sister.

Anonymous

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A letter to … My brother, who doesn’t know that I’m a heroin addict

My brother has Down’s syndrome. I wouldn’t change him for the world | Oliver Shone

“Sausage rolls!” I hear him exclaim, sitting in his place at the table while indulging in his favourite ice-cream. His knowledge is limited, his speech is limited, his comprehension of life is limited – but his emotions are heightened. This is my 13-year-old brother, Sebbie; he has Down’s syndrome, a congenital disorder arising from a chromosome defect.

He may not seem as clever as the average child; however, his intelligence, though less apparent, is no less valuable. He is not able to conform to society’s expectations by taking exams and tests to demonstrate his intellect. But Albert Einstein said: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” He is clever, but cannot be part of “our” life because he is not clever in the “normal” way.

He is sitting opposite me at the table eating his pudding, while dancing to a “happy song”; he just has to physically express enjoyment (he loves his vanilla soft scoop). Internal rhythm is often talked about by musicians and is something to which I cannot relate; Sebbie’s rhythm, however, represents his effusive personality. Dancing is one of his greatest passions.

Looking at him from across the table, I think how far he has come, physically and mentally. He has recently learned to swim and is making progress towards adding numbers.

‘He can be tricky, perplexing and sometimes outrageous, but his sense of fun and love outweighs all else.’ Photograph: Oliver and Sebbie Shone

I will never forget the day Sebbie was born; it was my fourth birthday and he arrived so quickly I didn’t even have time to finish my cake before going to see him in the hospital. He was in the special care baby unit, surrounded by wires and lying in a tiny pod. Lots of doctors surrounded him and, young as I was, I realised that he was not a healthy child, but to me he was just my new little brother and was perfect. I did not understand, then, the overwhelming distress and horror that faced my family.

There were many big words flying around that I did not understand. Tetralogy of Fallot … atrial septal defect … open-heart surgery … My parents were alarmed, panicked; I had not seen them like this and I felt afraid too. This was the start of a long and terrifying journey of operations, hopes and fears. But nothing seems to dampen his enthusiasm and his quirky outlook on life.

It is hard to judge “normal” in this world. There is talk of testing for Down’s syndrome, selective abortion and eradicating this condition. While I understand that no disability is ideal, I think it would be desperately sad to lose these precious children and adults who bring so much light into their families’ lives. Gone would be my crazy brother who talks of pizzas, trains and skiing all in the same sentence; gone would be the adoration that he feels for me and gone would be that wonderful dancing and tuneless singing.

We often find ourselves laughing round the table at funny remarks and comments of his; he has always had the ability to generate laughter. His sense of humour is infectious; there have been many times that he has diffused a tense situation with his comical asides. It is hard to take life too seriously when Sebbie lifts up his jumper and tells me to “Put your belly away!” His sense of timing is impeccable.

His lack of inhibition means he is more likely than not to join another family at the park or beach while giving us a cheeky wave. He has no sense of embarrassment, shyness or social conventions; this can lead to some embarrassment from me, although most people’s reactions are positive.

I often think of his future and what it holds. Sebbie will never be able to live alone and will need constant care and supervision, which I plan to always be a part of. Although we love him, it is frightening to look ahead to a life that will never be independent. We not only worry about how he will cope in later life, but also the major operation that will probably face him before he is 18.

Sebbie’s current condition (although he is physically more than able) can lead to frustration and difficulty. Even the simplest tasks, such as putting on a coat, socks and shoes, can lead to disputes, especially as he is such a strong character. Growing up with a brother with Down’s syndrome has been a real challenge but I would not change him for the world. He can be tricky, perplexing and sometimes outrageous, but his sense of fun and love outweighs all else. There are adults with the condition who have learned to drive cars, are performing in drama groups and are holding down jobs.

My great uncle had the same condition and he was born exactly 100 years before Sebbie, in 1903. Thankfully times have changed since he was alive – he spent his life in an institution. Now disabled children have huge opportunities open to them and are achieving more than was ever thought possible. With our help I hope that Sebbie will grasp these opportunities. Who knows what he might achieve? I will always be at his side to help him along and I know the rewards I get back from him, in the form of love and friendship will make it worthwhile.

• Oliver originally wrote this piece as part of his GCSE English course last year

My brother has Down’s syndrome. I wouldn’t change him for the world | Oliver Shone

The brave physician taking on Huge Brother

While the HSCIC stresses the alleged benefits of the data collection for epidemiological research, it plays down the commercial implications, yet I suspect it is this that is fuelling the determination to quash rebellion. Researchers have, for decades, found ways of collecting data on population health – information approved by ethics boards and scrutinised to ensure it does not violate confidentiality. Given that researchers have managed until now does suggest that having yet more data is not essential in identifying trends and patterns of illness, and the HSCIC has failed to make a convincing case for it.

Initially, the Government had intended the scheme to be compulsory, as medical records technically belong to the Health Secretary rather than patients. However, ministers have backed down and people are now able to opt out, but only if they state they wish to do so. The Government is clearly hoping most won’t bother because they believe that the new scheme will be anonymous.

I share some of Dr Gancz’s concerns about confidentiality, but I resent also the underhand way that the Government is going about this and the degree to which the public is being hoodwinked.

There are safeguards in place to protect individuals but they are not fail-safe. Given the speed of technological advancement, those safeguards will be breached in time. Maybe this doesn’t matter and, on balance, the benefits of access to such a rich seam of health data outweigh the risks. But if it is really so vital, then why not make the case and allow us to choose? If it’s simply that ministers have identified a novel source of much-needed revenue, then put the economic argument to us and, again, let us decide.

In trying to quash Dr Gancz’s act of rebellion, NHS bosses have made him a cause célèbre for those who feel the Government is becoming Big Brother-ish and dismissive of people’s concerns about confidentiality and privacy. We owe a debt to Dr Gancz, because in taking a lone, principled stand, he has ensured the issue is given the prominence it deserves and that those in power wanted to avoid.

—–

A ‘cancer envy’ campaign won’t help survival rates

_{Patrick Swayze is one of several celebrities to have died from pancreatic cancer}

To raise awareness of their cause, charities jostle for space in an increasingly crowded market place and some have resorted to shocking and attention-grabbing tactics to get heard.

But the latest campaign from the UK charity, Pancreatic Cancer Action, has gone too far. In print messages and an online film, real patients reveal the stark facts about pancreatic cancer – that, despite it being the fifth most common cancer, survival statistics remain shockingly low at just 3 per cent. Then the patients who feature go one step farther, revealing that ”I’d rather have breast cancer’’.

Of course, I understand the sentiment behind this. It is a chilling fact that pancreatic cancer survival rates remain so low and have barely improved despite decades of research, in sharp contrast to other common cancers.

Regardless of wealth or status, pancreatic cancer is a near-death sentence. Sir James Goldsmith, Luciano Pavarotti, Patrick Swayze and the journalist Simon Hoggart are among those who have succumbed to the disease.

But is ”cancer envy’’ really the way to get this message across? I recently went to a talk arranged by the charity Breast Cancer Care to highlight the plight of those with terminal breast cancer. Around 48,000 women are diagnosed with breast cancer in the UK each year and nearly a third of those will go on to develop the advanced form of the disease, which is terminal. Whilst early breast cancer receives substantial media interest, advanced breast cancer gets little attention, leaving sufferers feeling isolated and forgotten.

Imagine how those women, facing death, feel when they see or hear this campaign. The fact is that all cancer is awful. It disrupts lives, causes pain, suffering and death. Surely we don’t need to descend into a ”my cancer is worse than your cancer’’ competition in order to get a message across.

——-

Why don’t hospitals train health-care assistants?

One year on from the Francis report, which was sparked by the Mid-Staffordshire scandal, and what, if anything, has changed?

An investigation by the Nuffield Trust has found that more than 80 per cent of NHS hospitals have brought in reforms since the report’s publication last February. The health service is recruiting more nurses to improve care on wards, and there is a noticeable shift in the culture around honesty and openness when it comes to mistakes.

But why, then, according to a report by the Health Services Journal, are a quarter of all hospitals not giving health-care assistants any training before they begin work on the wards?

These assistants have one of the most important jobs in a hospital. They are the people who directly interact with patients – and do so more and more now that so much of nurses’ time is taken up with administration. They are the individuals who will often be delivering the actual care.

You can’t even get a job cleaning pens in an animal shelter without undergoing training. How on earth can hospitals think it is safe and proper to allow health-care assistants to start work without proper training?

Have lessons really been learnt?

Max Pemberton’s latest book, ‘The Doctor Will See You Now’ is published by Hodder. To order a copy, call Telegraph Books on 0844 871 1515

The brave physician taking on Huge Brother

My brother died of cancer and now I can"t stop pondering I have acquired it also

‘I interpret each niggle as a worst-situation scenario’ … (Photograph posed by model). Photograph: Alamy

I’m a 22-yr-previous health-related pupil. My brother was diagnosed with gastric cancer at 23 and passed away within three weeks of the diagnosis. It was quite traumatic for me and my household. We are all even now really depressed, and I also suffer from terrible nervousness that I have a “hidden” cancer, just like my brother. I always interpret every small niggle as the worst-case scenario. Because of my studies, I am often in a hospitals, surrounded by people with overall health troubles. I have commenced to examine my lymph nodes every single single day and am obtaining the situation extremely challenging to live with. How do I resolve it and move on?.

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My brother died of cancer and now I can"t stop pondering I have acquired it also