Angela was diagnosed with Neutral Lipid Storage Disease with Myopathy when she was 30. Before being diagnosed, life was ordinary for Angela, devoid of any kind of serious illness.
“When I was first diagnosed, I was dropped into a world that I didn't understand. It was just a really quiet, scary place for me to be, because I didn't understand illness and I didn't understand disability,” Angela says.
Then one day, she decided she “didn’t want that life”. “I started to push the boundaries of my new body with an Exercise Physiologist. When I started to achieve physical goals, it led me to want to explore what else I could achieve if I put my mind to it. My world started to come together again when I changed my perception of what disability meant to me.”
This change in her outlook led to Angela creating an animation film. “It was during COVID and the lockdown, I had a lot of time on my hands, as we all did, and I started thinking of ways I could get creative,” she says.
Through the animation, she wanted to share her life as a single mother living with disability. The idea was to educate the community about disability. “We’re having a conversation about a hard topic, but through a medium that is easier to digest.”
And that’s how she met Damien, an Independent Support Worker registered with Mable. “I first came across Mable through the commercial. It caught my attention and I checked out the website. I’ve been an NDIS participant for two years and I’ve had challenging experiences with support workers in the past, so I just love that I am able to handpick them through Mable,” Angela says.
“I wanted to learn how to make an animation, and on Damien's profile, it said he was an animator. That’s why I connected with him. What I didn’t realise was how talented he was!”
Damien, as it turned out, had professional experience in producing animation shows. “When I shared my concept with Damien, he expressed an interest in working with me to produce the film. He saw that the film had positive benefits to our community,” Angela shares.
The first episode about the character Angela is about her diagnosis, the challenges she faced, and accepting and “settling down into the diagnosis”. The second part is about how she regains ownership and responsibility over her life, and the third episode is about how she uses that ownership to help and advocate for the disability community.
“And without Mable,” Angela says, “I don’t think I would have had the opportunity to cross paths with Damien.”
“I first came across Mable through an ad I saw. I’ve been an NDIS participant for two years and I’ve had challenging experiences with support workers in the past, so I love that I can handpick them through Mable,” Angela says.
Angela found her team of four support workers on Mable, and they support her with everything from meal preparation, laundry and linen changing, cleaning and gardening.
She has had this team for 18 months now and says they are “the most beautiful bunch of people who are an extension of me and who love my kids as well”. For Angela, it’s important to connect with support workers on a personal level. “When I look for a support worker, I'm also looking to understand their hobbies and interests. Having things in common makes the process a bit more comfortable for both of us.”
Love for travel
For Angela, travelling is a big part of who she is. Her passion for travel, she says, stems from her childhood. “Mum and dad took us out exploring a lot. I don’t really remember weekends at home; we were always camping and fishing,” she recalls. "Before diagnosis, I used to travel a fair bit with my children, one big trip and various small ones per year. Travel is a big part of my identity.”
Post-diagnosis, and being a single parent with disability, that changed. “I don’t feel comfortable travelling on my own because of all those unplanned moments that can crop up. Disability is very inflexible and demanding, it needs a lot of preparation and organisation. Where unplanned moments arise, I would only feel comfortable, rested and safe with a support worker who knows me, my children and my disability well.”
Crystal, Angela’s support worker with whom she connected through Mable, acts “as an extension” of her arms, helping her pack and unpack, lift and carry things, and even simple tasks such as laying down a beach towel. On her last trip, Crystal accompanied Angela and her family for a road trip along the Sapphire Coast over the summer.
Angela recalls, “We motel hopped along the eastern coast from Lakes Entrance, VIC to Jervis Bay, NSW. Crystal and I had been working together through the year and she had developed a strong connection with my kids too, so I knew it would be fun. She’s become the fourth member of our little family.”
But it’s not just the ‘physical’ support Angela is grateful for. “One day, on our summer holiday, my muscles felt like jello from the heat. Crystal took the kids down to the lake for ice cream so I could recover. “Especially on holidays and whilst we’re supposed to be having fun, I feel so guilty when my kids miss out because my body can’t keep up. Receiving a hug and kind words in these moments of parental self-sabotage is of equal (if not more) importance than all the physical help,” she adds.
Peace of mind with Mable
Angela says she takes comfort in Mable’s process of approving support workers, through which they undergo NDIS Worker Screening Checks and Working with Children’s Check. “It gives me peace of mind that whoever’s coming to my home is going to be able to work with me and my family.
She concludes, “My support workers have essentially become an extension of my family. I’d definitely recommend Mable to everyone. Looking for ratings is easy, you have pictures, bios, and contacting people is easy. I think that’s the best thing about it: it’s just easy.”
Neutral lipid storage disease with myopathy is a rare condition — and an invisible disability — in which fats (lipids) are stored abnormally in organs and tissues throughout the body. It causes muscle weakness (myopathy) due to the accumulation of fats in muscle tissue. Other aspects of this condition may include a fatty liver, cardiomyopathy, pancreatitis, hypothyroidism, and type 2 diabetes.
Find Angela on Instagram @angela_bonus and her film on angelabonus.com.au
You too can connect with an independent support worker on Mable to start building your support team and begin achieving goals.
