Rhiannon Anderson shares journey with muscular dystrophy in new book

Rhiannon Anderson had a timer put on her life when she was just 13, and although she has lost a lot to her degenerative condition she said she wouldn’t be the same person without it.

Rhiannon Anderson, 26, lives with muscular dystrophy, a progressive muscle wasting condition that impacts almost every muscle in her body. Picture: Amy Philip Photography

Rhiannon Anderson has watched herself slowly deteriorate every day of her life.

Something she was capable of yesterday could be lost at any moment, but she says she would not be the person she is today without her disability.

When she was three, Ms Anderson was diagnosed with muscular dystrophy, a progressive muscle wasting condition.

At five she got her first mobility scooter and at 13 she found out the timer doctors had put on her life.

Ms Anderson stumbled across an email between her mum and the Starlight Children’s Foundation.

“In that email it had that I’d be lucky to make it to 19,” she said.

“Usually people don’t contemplate death until they’re a lot older and they’ve lived, they’ve got married, they’ve started a family and had a career, and gone travelling and all the rest of it.

“Muscular dystrophy is terminal so if nothing else kills me this is what will kill me.”

Rhiannon Anderson, 26, lives with muscular dystrophy, a progressive muscle wasting condition that impacts almost every muscle in her body. Picture: Amy Philp Photography

Now 26, Ms Anderson, who was born and raised in Toowoomba, is sharing all of her life’s ups and downs in an autobiography called Faith, Freedom & Other F Words: A Journey Beyond Muscular Dystrophy.

She says doctors still dispute whether she has Ullrich Congenital or Bethlem Myopathy, which are both muscular dystrophy conditions that affect the development of collagen 6 in the body.

Ms Anderson can still stand and walk for short periods but not easily and has become very good at adapting as her muscles continue to deteriorate.

“I have been through the ambiguous loss of watching your body slowly deteriorate and losing the ability to do things almost daily and having to continuously grieve that process, yet still continue to find a way forward and find the blessing in life,” she said.

“Most of the times I don’t notice that my condition is progressing until it’s like, ‘oh I used to be able to do that and now I can’t’.

“So I constantly learn to adapt and problem solve and find different ways of doing things.”

She said her future was clouded by thoughts of when she will lose the ability to do what she can do now.

“I worry about when will I stop walking? What will my life look like when I eventually have to rely on people 24/7,” she said.

“Given my lung function is at 42 per cent I would almost say I’m on borrowed time, so let’s make the most of it and try not to look so far into the future.”

She said since she was young she had received endless stares in public and had fallen victim to criticism from people hiding behind keyboards.

“I’ve been told by people, I hope you burn in hell,” she said.

“I’ve been told that we’re a waste of space and we’re oxygen thieves and we’re taking taxpayers’ money because of the NDIS and DSP (Disability Support Pension).

“They can call me whatever they want but I know deep down, that’s not me.”

Rhiannon Anderson, 26, lives with muscular dystrophy, a progressive muscle wasting condition that impacts almost every muscle in her body. Picture: Amy Philp Photography

Ms Anderson said society was hellbent on putting everyone into neat boxes.

“You’re sort of confined into that box and that box dictates how you should act, how you should speak, how you should dress, how you walk – or roll,” she said.

“As soon as you’re pigeonholed as different by societal standards you’re almost like a walking billboard, everyone does sort of stop and stare at you.

“But every one of us will be touched by disability at some point in time, some of us by birth, some by injury, some by old age, it’s a factor for everybody.”

Ms Anderson said she sometimes even felt pressure from within the disabled community.

“There’s been such a push to not say that you’re frustrated by your disability or that some days you wish that you could just tie up your hair without thinking or be able to just get in the car and go for a road trip by yourself,” she said.
Ms Anderson said if she wanted children there would be a 50 per cent chance they would inherit her disability.

“I think the entire time has been grappling with what my future looks like and the concept of probably not being able to have children because medically I won’t be strong enough,” she said.

“I would hate to give that to my child knowing what I’ve been through.

“I feel it would be almost selfish of me to have and expect my child to go through the things that I have just because I wanted a child.”

Rhiannon Anderson, 26, lives with muscular dystrophy, a progressive muscle wasting condition that impacts almost every muscle in her body. Picture: Amy Philp Photography

No matter what Ms Anderson had lost in her life, she said there was still so much to be grateful for.

“Eventually you arrive at acceptance and go ‘I’m still here, now I need to make the most of it and let me just go and try a bunch of things’,” she said.

Ms Anderson has certainly not shied away from doing the things she put her mind to including studying law, becoming a life coach, doing a 5km walk, and now publishing her book.

A few years ago Ms Anderson decided to try equine therapy and her mum’s first response was: “What if you fall off and have one bad accident, you may never walk again?”

“I said to my mum, I totally get where you are coming from and I don’t want to fall off and I want to keep walking but there will come a time where I can no longer walk,” Ms Anderson said.

“That will happen and it’s inevitable but I would much rather get there doing something I absolutely love than not doing something I want to try, out of fear over what could happen.”

Rhiannon Anderson, 26, lives with muscular dystrophy, a progressive muscle wasting condition that impacts almost every muscle in her body. Picture: Amy Philp Photography

Ms Anderson said her disability had given her more appreciation for life.

“As much as there are barriers to disabled life there is certainly still incredible moments that I wouldn’t have had in my life without my disability,” she said.

“When you have a terminal illness over your head you sort of take stock a little bit more and appreciate the little things and the awkward moments and the laughs.”

Through her life coaching and now her book she hopes she can show people going through a tough time to see the good through the pain.

“If I can just make at least one person feel seen, heard, understood, and felt in their journey, whatever that journey may be disability or otherwise, then it makes everything worth it,” she said.

Her ebook which went on sale on November 4 is already on the list of Amazon Best Sellers and is now available in 13 countries.

Her paperback book will be available to order on Amazon on November 18, and Ms Anderson is hoping for it to be stocked in some Australian bookstores.

The book published by American publishing company She Rises Publishing will be sold in Walmart, and Barnes and Noble in the US and Waterstones in Britain.