Living with our loss

This Sunday 15 members of Sian Levy’s family will gather at the graveside of her brother Stephen Okrent. The stone-setting ceremony will give them a chance to reflect on the year that has passed since he was taken from them by the Covid-19 virus, a year when normal mourning has been impossible.

Their lives changed forever on March 27 2020, the day after lockdown measures came into effect in England.

Sian, her twin sister Lucy and older brother Stephen were all suffering from the virus. Lucy and Sian had chronic back pain, a terrible cough and fever; Stephen’s main symptom was fatigue. Sian had been ill for 14 days, and was just strong enough to light her Shabbat candles. Stephen had been ill for nine days.

After dinner, Sian and her family sat in the dark playing a game of “I spy”. The phone rang repeatedly, so they picked it up, even though it was Shabbat. It was Lucy. “He’s stopped breathing,” she cried.

“I knew the second she said those words that it was Stephen,” recalls Sian. “Thirty seconds later she called back: ‘He’s dead’.” Stephen was just 53. A year on, the memory of that traumatic night is vivid in her memory.

As soon as she heard the news, she jumped into her car with her son Jamie, 18. They drove to Stephen’s home in Edgware, where he and his wife Laura had recently celebrated their first wedding anniversary.

“When I turned up outside his house, the ambulance crew were in hazmat suits. It was like a sci-fi movie.”

Sian, her sisters Lucy and Sami and Stephen’s daughter Alex stood outside the house in clusters, too scared to get close and comfort one another. Her parents sat in their car, forbidden to enter the house.

“For hours we waited outside in our little family bubbles with sheer panic and grief on our faces. We couldn’t even touch each other, hold each other, the basic things you need when experiencing a tragedy like this.”

Much later when Sian and Jamie got home, on her GP’s advice, they removed all their outer clothes outside the house before taking hot showers and scrubbing themselves clean. Then they went into separate isolation for 48 hours.

“I didn’t sleep a wink. I was so scared of what had happened, so scared for my parents, for how they would cope all alone in their house with none of us holding them. It was the worst 48 hours of my life.”

Sleep, and the lack of it has been a key part of this year for Sian and her family. To mark the first yahrzeit the family has set up a wellbeing and mental health project The Stephen Okrent Shared Grief Foundation, with the aim of helping others manage their grief, predominantly through sleep counselling, via the bereavement charity Grief Encounter. To date they have raised almost £200,000 of their £250,000 goal.

“When Stephen died, we did not know where to turn to manage our grief,” explains Sian. “We needed help to talk, to learn how to breathe, and to be able to sleep again.”

Sian’s GP, Dr Eric Ansell, put her in touch with his sister Jane Ansell, the founder of the charity Sleep Scotland, which supports children with severe sleep problems. Sleep deprivation is a common symptom of grief, which creates a vicious cycle of exhaustion that makes everything more challenging. Ansell will train therapists to counsel those suffering sleep deprivation.

The stone-setting this weekend may help the family begin to recover from the trauma of Stephen’s funeral. They had to wait for five days, and only ten people could attend. Sian’s husband Julian and sister Lucy had Covid by then, so couldn’t go, and nor could her parents for fear of catching it.

Just six months before, Julian’s mother had died. Then, there had been more than 600 people at the funeral. “They were a wall holding us up at the graveside. How was I going to get through my brother’s funeral with no one there to support us?”

After the funeral the mourners made their way to the home of her parents, who had listened to the service on the phone. In their front garden the family sat outside, socially distanced, as prayers were led by their good friend Rabbi Mendel Cohen of St John’s Wood United Synagogue.

Zoom became the family’s lifeline, as each family member sat shiva alone in their home. In some ways, says Sian, it was comforting.“Every night there were hundreds of people on Zoom. It felt dignified that everyone was listening and that no one was chatting in the hallway which so often happens.”

But afterwards was more difficult. The country was still in lockdown and her family were unable to be together. The saving grace was the good weather that eventually allowed them to gather in her parents’ back garden.

“We really couldn’t begin to start the healing process as we hadn’t begun to mourn properly,” Sian recalls. “Sitting shiva together helps you and we never got to do that. You can’t imagine not holding your parents. It’s hard to move forward if you have not grieved.”

Each morning she woke up with a wave of aching pain, reliving the events in minute detail over and over again. Ordinarily, the routine of life would have been a welcome distraction, but with lockdown in place her dark thoughts were ever present, often wondering if her brother could have been saved.

“As we were one of the first in the community to get Covid, the understanding was that chronic fatigue was normal,” recalls Sian. “We didn’t think about checking oxygen levels, we just thought about temperature and a cough. He wasn’t struggling to breathe when we last spoke on the Thursday. ‘Swear to me you will call an ambulance if you struggle to breathe,’ were the last words I said to him.”

Friday nights have been particularly painful. As she lights the Shabbat candles and darkness comes in, she is triggered by the memory of that fateful winter night.

A year on the pain is still palpable. It’s not just the death of her brother but the loss of the way her family was before March 27 2020. The anniversary, which fell on Shabbat, was gruelling. “I was howling. I have held it in a lot this year. I felt like I had been punched in the stomach.”

Losing someone is very hard at the best of times but the pandemic has magnified the intense pain. Being unable to experience the Jewish mourning rituals — such as the funeral and shiva — that are so important in the healing process has made Sian’s family, and many others feel as though they have been robbed.

Understanding the journey of grief has helped her recover gradually. In particular she has been inspired by psychotherapist Sasha Bates’s book, Languages of Loss, (Yellow Kite) which was published just after Stephen’s death. “It feels like there will be no end to it, ever,” writes Bates, who was widowed suddenly aged 49. “And the truth be told, actually there isn’t an end, although it changes shape.”

“You have to learn to accept the grief, and then you move forward in a new way,” says Sian. “First it visits you all the time, and eventually other things knock on the door, like happiness.”

March 2021 was a bittersweet month. The anniversary of her brother’s death coincided with her son’s barmitzvah and mother’s 75th birthday. For Sian it marked a turning point in her outlook on life. Having experienced the brutality of death, she is now resolutely embracing life, as no-one knows what’s around the corner.

“I want to celebrate every day as much as I can now,” says Sian. Her recent 50th birthday was celebrated by hosting groups of six in her garden. In May she hopes for a bigger birthday celebration, and she is looking forward to her niece’s wedding in the summer. On her birthday: “So many people said today is a new start of happiness. And I woke up feeling very loved and happy. It was wonderful and it made me realise you have to live each day.”

She has become a vaccine volunteer, which she finds very rewarding. Vaccinating her sisters, against the cruel disease that killed her brother, was a poignant and emotional moment. And then there’s the foundation in her brother’s name which will fund art and drama therapy, yoga and mindfulness. There will also be a Shared Grief Memorial Wall, a place online where people can light a memorial candle, upload a photo/message and make a donation in memory of someone they have lost.

Grief can be triggered all the time. On her birthday a friend presented her with an old photo of Sian as a young girl on Purim, dressed up as the lead guitarist of AC/DC. A seemingly innocent photo, this was Stephen’s favourite band when he was growing up and so it triggered intense, sorrowful memories. “It was a sadness and happiness together as I felt like he had visited me. I didn’t know the photo existed and now it’s on my bedside table.”

Her personal mission is to ensure that grief doesn’t engulf her family’s life. Everything she does now is in Stephen’s memory, so he can look down and be proud.

“I know too many people who pass on their grief to their children. The worst thing is letting grief overtake your life, because then you both died. When you lose someone you love, it leaves a hole inside you. The hole doesn’t get smaller but life around it gets bigger.”