Every night I call my mum. Sometimes we text, or Facebook during the day, but mainly we talk over the phone as it is easier for Mum.
She tells me stories about what her friends have been up to, gives me an update on Dad and our dog, and other general chit chat.
To some people my age, a regular phone call home is less of a pleasure and more a result of a guilty conscience, but I cherish the time I spend on the phone with Mum. We may only speak for 15 to 20 minutes, but for those 15 to 20 minutes I feel completely connected to her, listening to the sound of her voice, and when I say listening, I mean I’m really listening, trying to decipher how she’s feeling.
My mum was 40-years-old when she was diagnosed with multiple sclerosis (MS); a disease that attacks the brain, the spinal cord, and the optic nerves. To say my little family of three was knocked clean off our feet would be a huge understatement.
Mum picked me up from school, like any other weekday. She had finished work at a chic Ascot clothing boutique close by, and when I climbed into the back of the car I sensed something wasn’t right. Mum told me she’d had a fall at work, landing on her elbow in a basket of wire clothing hangers. She seemed fine, only complaining about a jarred wrist and a sore elbow. We drove to our local shopping centre, and I was instructed to wait in the car. Mum returned within minutes, and she began to start the car.
“Lauren, I can’t move my leg, my left leg won’t move. I can’t drive the car,” were the words that came out of her mouth, and I instantly started to panic. If Mum couldn’t move her left leg to put her foot on the clutch, she couldn’t drive the car. Amid the panic, I can’t even tell you how we made it home that day. I know Mum drove, but I have no idea how.
After months of scans, MRIs, and a misdiagnosis, we discovered that mum had primary progressive MS. However, due to the lack of knowledge of the disease at the time, Mum’s prognosis was unclear. As a 10-year-old child, that was terrifying.
I was a typical pre-teen, born in country Queensland and raised in Brisbane, and I was oblivious to mysterious diseases like MS. I’d never heard of it, heck, neither of my parents had heard of it either. My dad brought me home brochure-upon-brochure-upon-brochure, full of information about MS to try to help me get my head around it all. But to be honest, it still confuses me to this day.
The first few years that followed her diagnosis seemed to fly by, with her reduction in mobility acting as markers along her journey. First, Mum had a cane to give her stability whenever she was out and about, but that soon progressed to a walking frame, resulting in mum having to give up some of the things she loved most; her job, her driver’s licence, and ultimately her independence.
The walking frame soon became a wheelchair. Her upstairs bedroom became a fully equipped downstairs oasis, and our house became her fortress.
Fast-forward to now, 13 years since her diagnosis, and Mum’s condition has continued to deteriorate. On an average day, aside from various appointments that occasionally pop up, Mum remains in bed, and that breaks my heart.
Everyday life has changed in an unimaginable way, purely because the things most people take for granted suddenly feel impossible when someone has a disability. Guilt riddles me every time I take the elevator instead of the stairs, or if I’m seated in a crowded restaurant with no room to move. I think, “Mum could be doing this, she could be here with me,” but she isn’t. The number of restaurants that are ill-equipped to accommodate people with disabilities is deeply upsetting. Imagine spending all your time dealing with the fact your body has turned on you, and then imagine facing that exact same anxiety each time you leave the house.
Depression and anxiety are common in MS sufferers, and each time I overhear Mum talking about how trapped she feels, I worry. I always worry. I’m at the age now where I don’t see Mum as an indestructible god-like creature, and instead see her as a human being, one who is susceptible to pain. I remember all the moments when I huffed and puffed whenever she made a fuss over me, or when she reprimanded me for not letting her know my whereabouts, but that is unconditional love for you. It is my mission to help Mum stay positive, which is why I can’t sleep unless I speak to her each night.
Leaving home in April this year and moving interstate was, and still is, the hardest thing I’ve ever done. I’m constantly in two frames of mind. Sometimes I’m proud of myself for following my dreams, but most of the time guilt envelops me because I’m not there for her, and for Dad. She is my biggest supporter, my best friend, and my rock. She still pulls me into line when I’m being irrational, and she’s there when things go wrong and I need a shoulder to cry on (figuratively speaking).
Despite her diagnosis, she’s still my mum in every sense of the word. – Lauren Kavanagh
Top photo of Lauren and her mother by Steve Kavanagh, and family photo supplied.