Gaela Hilditch is battling a debilitating form of the eye disease glaucoma.
While it’s not much fun for Gaela, she says if it wasn’t for the disease, she wouldn’t have been prompted to get involved in the charity support group which helps other sufferers in Western Australia.
While some forms of glaucoma can be relatively easy to manage, Gaela has a form of the illness that is challenging to keep under control.
It keeps her constantly researching alternative treatments and drugs, something that prompted her to volunteer to get involved in the support group 20 years ago, when she was first diagnosed.
For the last eight years she has been running the group, pretty much on her own.
“I felt we needed a lot more education from experts, so I’ve been organising three meetings a year with ophthalmologists,” she says.
“Years ago, we would have one speaker a year and then all the other speakers were ‘how not to fall over’ and things like that.”
Ms Hildich said the group back then wasn’t attracting big attendances.
While it now attracts good numbers she said organising the group takes up a lot of her time.
“I often get calls from people who have been recently diagnosed and want to chat on the phone about how they are feeling.
“While I’m not really in that role, I feel a lot of compassion for them, and I know what they are going through, so obviously I do communicate and talk to them.
“I also advise them to ring Glaucoma Australia, which they often do.”
Gaela is particularly busy before meetings, organising catering, venues, speakers, sending emails to people about the event and putting out flyers.
“It takes a lot of time and motivation to keep going,” she says.
And while it’s hard work, Gaela says the results are satisfying.
“For the most part people are very appreciative that I do the work – and that’s what keeps me going.”
For the most part running the group is a one-person job, without a lot of support, except for the help of her husband.
“He’s amazing, he writes all the labels, packs up all the stuff, the glaucoma stand, and he does all the books.
“We charge $5 entry, which all goes to Glaucoma Australia, because our afternoon tea is provided by Perth Eye Hospital, but I have to arrange it all.”
She says Glaucoma Australia is very supportive of the work she does.
Gaela is happy enough to take on most of the work herself.
“We used to have a lovely lady who would turn up and say she would sell all the Glaucoma Australia raffle tickets for us, so you don’t have to worry about that. She stepped in and did it, used her own initiative.
“Other people have said they’d like to volunteer and help.
“I say to them the best thing to do is come to a meeting, see how it’s run and see what’s needed and then you can figure out how best to support it.
“Those people never turn up. It’s quite extraordinary.”
If it wasn’t for her own glaucoma Gaela says she wouldn’t have got involved with the group.
“Glaucoma is not a sexy disease. It doesn’t have a big profile out there and it mostly affects old people.”
She says though that volunteering provides a sense of purpose.
“There’s nothing like feeling that you are helping others.
“I must admit I get the biggest buzz when people ring me up and they’ve been diagnosed, or they are looking at having a surgery and I ask them ‘have you checked out such and such?’ or ‘has your specialist offered this option or that option?’.
“They tell me they feel so much better having spoken to me and that makes me feel really good about the role that I do.”
How long she can keep going? Gaela is not sure, although a meeting is planned for July, which she hopes will shed some clarity on the future.
“That will bring up a lot of issues, like do people feel they can help or volunteer and if not, why not? Maybe they think I’m running it so well that I don’t need any help.
“I’m looking forward to that session and it may give me a new spring in my step.”