The healing power of social media

2013-10-31 11:00

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It’s the virtual equivalent of confiding in a friend or joining a support group, only numbers are large, communication is instant and accessibility is 24/7.

You might use Facebook to let friends know you ate a wholewheat rusk for breakfast or how cute your puppy is, but to thousands of people it plays an invaluable role.

Groups started on the platfrom offer comfort and support to everyone from heartbroken lovers and depression sufferers to families trying to trace missing relatives and parents who’ve buried a child.

Social media offers a way to connect with others who understand your predicament – and feel your pain.

Cape Town-based clinical psychologist Sue Musikanth says starting a social network group during a difficult time has several positives: it offers support, allows those who live far away to stay in touch, and gives people who’ve coped with a similar trauma an opportunity to share, gather information and offer coping skills to those who might be in an earlier stage of their ordeal.

Three local families share their stories.

1 000 Candles for baby Reef – official Facebook group

Number of members: 2 423

Their story: Until he was five months old, little Reef Carneson was a normal, healthy baby. Then a scab on his head led to a chilling diagnosis: he had acute lymphoblastic leukaemia.

After months of chemotherapy and a gruelling bone-marrow transplant, the family’s hope for his recovery was short-lived as Reef, then 11 months old, developed severe graft-versus-host disease (GVHD) in response to the transplant.

‘We’ll never forget that time,’ says Reef’s mom, Lydia. ‘Reef’s skin peeled off his body in sheets and he screamed constantly from the pain. Nothing gave him relief and he was in ICU practically every two weeks.’

The GVHD affected almost all the organs in his body and his physical development was severely compromised. So the family – including Reef’s father, Ryan, and sister Payten (now two) – moved to Los Angeles so Reef could receive specialist treatment.

Now five, Reef’s leukemia is in remission but his health remains fragile. And as he fights a brave battle, his daily trials and tribulations are shared on Facebook.

‘Reef is being admitted to hospital with pneumonia! My day just turned into a nightmare!!!! (Scared, petrified, ALONE!),’ Lydia recently posted.

Within seconds, the post received comments from some of the 2 000-plus members of the group.

‘It would have been devastating if every new infection, every traumatic hospital visit and every call for prayer or support went unseen, unshared and unanswered,’ Lydia says, thinking back. ‘Now we’re praying for the day Reef is completely off medication so we can return to South Africa.’

How facebook helped: ‘When Reef was first diagnosed and we were told he had a week to live, we needed the world to pray for our son.

The quickest way to get the message out was to start a Facebook page,’ Lydia says. ‘Reef’s uncle, Richard Warren, asked family and friends to say a prayer for Reef – and to post a picture of a candle they lit for him on the page.’

Lydia says the flood of pictures on his page was the most beautiful thing she’d ever experienced.

‘Hundreds of people – friends, family, strangers – were suddenly united in faith to save Reef’s life. I loved looking at the images from people of different cultures and backgrounds – no matter who we prayed to or what we believed, we all had faith that Reef would live.’

The page was a lifeline for Lydia. ‘I was in isolation in a hospital for two years and my only contact with the outside world was via Facebook. It was an outlet for my emotions; it helped me cope.’

Tribute to Kim and Monique Hardenberg

Number of members: 3 068

Their story: It’s been four years since sisters Kim and Monique Hardenberg died on impact in a tragic car accident – yet messages on this Facebook wall still pour in daily.

Some mourners share fond memories or old photos of themselves with the sisters, others offer messages of support to their family, while loved ones share their feelings of loss on special days, such as the sisters’ birthdays or on the anniversary of their death.

Erin Hardenberg, 28, will never forget the date 16 August 2009. She and her sisters were driving home from a friend’s 40th in Steenberg, Cape Town, when a drunk driver jumped a red light and crashed into them.

Kim, 26, and Monique, 21, lost their lives instantly, and Erin was rushed to hospital in a coma.

‘We remember them every day,’ Erin says. ‘Sometimes the memories make us smile and sometimes they bring tears to our eyes because the way they lost their lives is so heartbreaking.’

Yet seeing how many people still pay tribute to Kim and Monique on Facebook ‘speaks volumes about the kind of people they were’, she says.

How facebook helped: The sisters’ cousin, Shireen Lyners, started the group a few days after the accident. Erin says it worked because some people are more comfortable sharing their feelings online than in person.

‘Even some who were very close to the family didn’t know what to say to us directly. They were at a loss for words. Yet they, too, have posted on the wall.’

The blurb on the Hardenbergs’ Facebook page shares this powerful reminder: ‘Treasure the time you have with loved ones and do not be afraid to say “I love you” or to apologise for any hurt you may have caused, for you never know what tomorrow might bring.’

Mothers and fathers with disabled children

Number of members: 1 416

Their story: Eastern Cape resident Hannelore Jordaan is mom to nine-year-old Jade, who was born with cerebral palsy.

‘I first had to grieve for the normal child I thought I was having,’ Hannelore says. ‘Then I learnt to accept it. Thrown into the deep pool of life, I could either drown or learn to swim. So I swam.’

Hannelore and husband Olly have adapted their lives to suit Jade, who has to be cared for around the clock.

‘Jade can’t walk, talk, sit or see,’ explains Hannelore, who stays at home to look after her daughter. ‘She is epileptic and mentally challenged. During the day, I put the TV on as she loves the sound. Then as I clean the house around her, I’ll talk and sing to her or tickle her.’

The devoted mother explains that because Jade isn’t active, her brain doesn’t switch off and she never gets tired. ‘She has medication to help her rest. She sleeps next to me and I turn her twice a night so her body doesn’t get sore. And so one day ends and another begins....’

Hannelore says despite everything, Jade is a happy child. ‘She laughs at funny noises and loves animals. And she’s taught me more than I could ever teach her. She has made me a better person by introducing me to a world where you can’t sweat the small stuff.’

How facebook helped When Olly and Hannelore, who live on a farm a few kilometres outside Grahamstown, felt they didn’t have the kind of support and understanding they so desperately needed, they took to the web.

‘I started the group not only for myself but to help others too,’ Hannelore says. ‘I was so alone, with nobody to talk to. I wish I could be with every parent who gives birth to a disabled child to say “It’s going to be okay. You can do this.

You are stronger than you think you are.” Many of our members have become firm friends and the group has changed my life.’

Starting a group? What to watch out for

‘Some people used Reef’s page information and photos to scam people out of money,’ Lydia says. ‘So we were forced to close the page and reopen a private group. Now we monitor everyone who gets added to his page.’

Watch out for people who judge you openly. ‘You’ll always get the haters,’ Lydia says. She suggests simply removing them from the group.

Erin points out that some people post advertisements and take advantage of the high number of members to get exposure for their business causes.

And then there are the trolls. ‘Someone posted an article to the group about a year ago, attacking Christianity,’ Erin says.

‘I didn’t even know who the person was, but he used my sisters’ tribute page as his platform to spread hate speech. Needless to say, I removed the person – and the post – from the group.’

Hannelore suggests asking someone you trust in the group to help with the administration of it. Daily monitoring is time-consuming, especially when you are a primary caregiver.

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