Occupation: Miriam Crowe, Radio Lollipop
What might seem a terrible disadvantage to you can be a blessing to someone else. And so it is that Miriam Crowe, 22, came to be involved in children's charity Radio Lollipop, for which she currently occupies the chairperson's role.
"I was a sick teenager, so I wanted to get into helping children who were in hospital," she says. "I looked into it, applied and was accepted. I got on the wards, and it was amazing, and I started getting more involved with the management team, in press and PR last year, and then took the chairperson's role this year."
The chairperson's role involves running events, management team meetings, delegating different jobs and guiding the team towards achieving the goals they've set for the year. There are 25 volunteers currently working the wards at the Gold Coast hospital where Marian is based (there are about 90 at the Marter Children's Hospital in Brisbane).
The night we meet, there are six potential new Radio Lollipop recruits gathered around a table, covered in spotty red plastic, at the studio. The room is covered in children's paintings and handprints, there are doll houses and a table tennis table and ample craft supplied hidden in lockers.There's an energy in the room that's palpable.
Mostly uni students, though there are older volunteers on the team, the new volunteers are taken through the ropes. Radio Lollipop started in the UK in 1978, at Queen Mary's Hospital for Children in Carshalton, Surrey, but it came to Australia in 1985. Volunteers are expected to dedicate themselves to a weekly two-hour shift for at least a year, as well as helping with fundraising activities.
"We try to get the word out through word-of-mouth and special guests," says Miriam. "All the money we raise goes to craft materials and the 'Welcome Packs' for kids, anything that will benefit the kids. Our philosophy is that it's all about the kids."
On any given night, and on Saturday mornings, four or five volunteers work the shift, taking to the wards in fairy wings (optional) to chat to the kids and high on energy. New arrivals get a Welcome Pack, which contains stickers, a colouring book and pencils and other donated items. In the studio, the craft table is set up for kids eager to get out of their beds and their parents.
"Friends who are visiting, siblings and parents come down and do some crafts or meet the special guests," says Miriam. Gold Coast United, Lauren from High-5 and McKenzie Comer and Cody Simpson have all come in to talk with the kids and a group from Bunnings comes in to practise crafts sometimes on Saturdays.
Though she looks 'normal', Miriam, who is originally from Christchurch, New Zealand, has suffered from Polymyositis, a rare and chronic muscle inflammatory disease, for over half her life. This meant spending a considerable amount of time at home alone during her teen years, at which time she turned to journaling and her faith for comfort.
"I was in hospital a little bit, but mostly at home and isolated by myself," she says. "It really changed my life, because no one really understood what I was going through. I couldn't just slot back into a normal way of life after so many years of being unwell – I had to do something to make a difference to other people. I love what I'm doing now."
She played piano, completed schoolwork from her bedside and started painting rocks (Seed Stones) to extend her creativity. "That gave me some sort of purpose, because I didn't have the energy to do school or play sport or have a social life. I had pretty unique relationships with my teachers, who took extra time to help me, but I had to be pretty independent."
Polymyositis is a lifelong condition, which means Miriam is on daily medication and requires an afternoon nap to replenish her body, even if she's had a good sleep the night before. A typical day is split in two: she tries to accomplish a lot in the mornings, then breaks, naps and returns to work.
"Coming to Lollipop helps me to get perspective," she says. "I see kids who are worse off than me."
Miriam dedicates several hours to Radio Lollipop each week, for free, and freelances as a journalist on the side, writing for wedding companies. She's currently working towards launching a magazine for chronically sick kids and their parents.
"It will have inspiring stories and articles that can help people," she says.
While there have been more than a few inspiring moments working the hospital floor with the Lollipop crew, the most memorable for Miriam is the Down's Syndrome girl who won one of the nightly prizes on a particularly restless night.
"She was really unwell, and came down to the studio and couldn't deal with the pain, so went back to her room. She was in one of the isolation rooms, and her parents and grandparents were trying to get her to go to bed. I wasn't sure if I should go in, but I I knocked on the door and told her she'd won the prize. She stopped crying, settled down and everyone clapped. I saw her grandad down the hallway later on and he gave me a little wave as if to say, 'Thank you so much'."
To learn more about Polymyositis and Miriam's story, check out Miriam's blogs ...But You Don't Look Sick and Mimspiration.
If you're interested in volunteering for Radio Lollipop, and you're over 18, they'd love to hear from you. Also welcome are donations for the kids' Welcome Packs.
Girl With a Satchel