real life

'Mum's illness was a devastating blow, but in a way I have to thank it.'

Fourteen years ago my mum was dealt the toughest of blows. She was diagnosed with primary-progressive multiple sclerosis — a disease that has, in a sense, robbed her of her life.

During this time I’ve watched my strong, vibrant, vivacious mother gradually lose her independence, and it still breaks my heart today.

Her condition has deteriorated slowly over time, but in the last 12 months we’ve seen a rapid change. So much so that earlier this year Mum had to say goodbye to our family home of nearly 20 years and move to a high-care facility in Brisbane’s east.

Asher House, where Mum now calls home, is run by Wesley Mission and is home to 12 young people living with high-care needs. The home offers them permanent, safe, and independent living with 24-hour care.

I worry about her a lot, but mostly, I worry about her mental health. (image: supplied)

Here, Mum is well cared for and made to feel at home, and the house is beautiful — really, really beautiful. We couldn't ask for a better place for mum to live. But it still doesn't change the fact that five out of seven days, most weeks, she's alone — without me, without my dad, and without the comfort and security of our family home. Confined to a motorised chair, unable to do anything for herself. And this is something I think I'm still coming to terms with.

The thought of her being alone, although well cared for, sends my anxiety through the roof. I worry about her a lot, but mostly, I worry about her mental health. Mental health is such a huge factor for people suffering from multiple sclerosis, with many people dealing with chronic depression and anxiety on top of their illness. It's soul-destroying. And when I hear Mum talk about being virtually trapped in her own body I can't help but worry.

As much as I hate mum's disease, I guess I should thank it, in a way. (image: supplied)

Our everyday family life has changed dramatically over the last 14 years, and the things we once took for granted are now all we think about. There's no such thing as sleep-ins, going out for lunch, booking holidays, or spontaneous weekends away.

For my parents and I, it's all about keeping mum in a consistent routine - a routine that includes eating and doing the exact same things, every single day. Some days seem monotonous. To outsiders our routine may seem unnatural or over the top, but for us, a regimented life just works.

As a 24-year-old woman, with so many friends living such spontaneous lives - full of last-minute plans and impulsive decisions — it does make me feel like I'm trapped in this crazy parallel universe no one else can see but me. But in all honesty, I don't think I'd be the person I am now had my family and I not been dealt this devastating blow. And one thing is for sure, I wouldn't have the relationship with my mum that I do now.

Listen:  Nikki Gemmell talks to Mia Freedman about her mother's chronic suffering on No Filter. (Post continues after audio...)

It seems so cliche to say I'm best friends with my mum, but for me it's 100 percent the truth. She is the piece of the puzzle that keeps me whole - and without her, shit would really get out of hand in ways you couldn't imagine.

Mum's illness has completely changed the course of all our lives, and no doubt will continue to into the future. And as much as I despise this horrendous disease, I guess I have to thank it in a way — because without MS, our life wouldn't seem quite so precious.