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Posted: 2020-07-10 10:59:00

In 2015 I was at an interview in Melbourne to be an MS Ambassador. Karen walked past and gave me this weird look. Then I was fortunate to sit next to her in training. We just clicked.

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Karen says she doesn’t want to complain to me because I’ve been through so much, but so has she. She became disabled as a young mum and had already handed in her driver’s licence when we met. It’s hard to surrender that independence.

Karen has a heart of gold. She’s bright, bubbly, dynamic and headstrong. I run a tight ship at home. Everything has to be in its place because of my short-term memory problems. But not Kaz. She’s disorganised.

We both have dachshunds. I got mine, Pansy, first and I’m pretty stern with her. But Karen lets her dog, Tallulah, get away with everything.

Those dogs have made a huge difference in our lives, filling a void with unconditional love. It takes guts to be disabled and be by yourself. [Justine has two adult children.]

Karen’s eating frustrates me. She can eat whatever she wants and hardly puts on weight. Whereas I sniff food and it’s like, “Hello! It’s on my arse.” Although, not long after we met, we had a weekend away at a MS charity fundraiser, and she’d had a relapse and was on steroids, which gave her the mega munchies. I struggled to zip up her dress for the formal event! But we managed to squeeze her into it.

We can tell each other personal things about our bodies that no one else understands, especially when it comes to dating. Try telling a guy you’ve got a major disability: you’ve never seen them run so fast!

And Karen makes me laugh. She loves comedy. She’s doing a comedy writing class with Tim Ferguson [who also has MS]. The funny things about MS will be part of her routine. We use humour as a coping mechanism.

Karen has now gone back to physiotherapy rehabilitation. I’m glad. To walk in the park without a stick is something able-bodied people take for granted. I’ve seen her hit rock bottom, but lately she’s the best I’ve ever seen her.

One benefit of MS is you can’t always feel certain body parts, so tattoos don’t hurt much. I got the “Kiss Goodbye to MS” lips on my wrist, and a dragonfly I’d drawn to go with it. It represents hope. I started art as a hobby after my diagnosis. Now, teaching art wellness classes to people with disabilities has become a business. I’ll get Karen to paint one day.

KAREN: When I first saw Justine, I thought there was only one MS Ambassador position going, so I gave her a bit of an attitude look. But at training, it was like I’d known her forever.

Justine was the first friend I made who also had multiple sclerosis, even though I’d had MS for 15 years. I was diagnosed when I was 21. My partner at the time and I had a two-year-old son and I was pregnant with my first daughter. I’d lost some of my speech and couldn’t even read my son a story. [Karen has three children.]

Justine does nude life modelling for art classes. Once, I was like, “I’ll do it, too!” She said, “No, they like curves, not skinny, scrawny people!”

Back then, I didn’t want to know anything about MS, but now I realise I have to be proactive about my health. Justine is very health-conscious. She’s never smoked, whereas I was a dirty smoker for years. And I eat three times as much as her but don’t put on weight.

One reason we get along is that Justine is really open. We have conversations about our bodies and sex that we can’t, or would be embarrassed to have, with other friends. Dating is different for us; we’re time bombs. We both know how it feels to be rejected and when people try to define you by your disability.

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Justine does nude life modelling for art classes. Once, I was like, “I’ll do it, too!” She said, “No, they like curves, not skinny, scrawny people!” Justine can be blunt, but I can take it because I know how good her heart is.

As well as MS, Justine has experienced other illness. I was in India volunteering when she was diagnosed with a stage two melanoma in 2016 [now in remission]. It was devastating.

Justine is extremely resilient. Her mother was diagnosed with MS when she was nine. Her father left and she had to care for her mum from a young age. She’s also very driven. Even when she’s in a lot of pain, she forces herself to do stuff, whereas I’m a bit of a sook.

When I met Justine, I used a walking stick and my leg was dragging. Now I have an amazing physio team and have started running again. I’ve also started power-lifting, like Justine. Once, I deadlifted my own body weight [53 kilograms] but not over my head like she can.

We’ve got a lot in common: we lost our mums young [Karen’s mother died of cancer] and we’re single mothers. We’re also tattooed. She got the lips from the “Kiss Goodbye to MS” campaign after I did. I’ve also got Dory from Finding Nemo because I’ve got MS-related short-term memory problems. I decided to own it!

After her MS diagnosis, Justine started teaching art. It makes her so happy. She wants to get me painting but I’d be crap at it. I can’t even draw stick figures.

To read more from Good Weekend magazine, visit our page at The Sydney Morning Herald, The Age and Brisbane Times.

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