Every night I call my mum. We used to text, but now we just talk over the phone as it is easier for Mum.
For some people, 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, trying to gauge how she’s feeling.
My mum was 40-years-old when she was diagnosed with multiple sclerosis (MS), a disease that attacks the Central Nervous System – particularly the brain and the spinal cord. To say my little family of three was knocked clean off our feet would be a huge understatement.
Dad picked me up from school that afternoon, which was a rarity. And when I climbed into the back of the car, I sensed something wasn’t right. He told me that Mum had a fall at work, hurting her elbow. Then his phone rang, it was Mum.
“I can’t move my leg, it’s numb. I can’t drive the car,” were the words that came screaming down the phone. I panicked, demanding that we drive to Mum quick. The rest of that afternoon is a complete blur.
After months of scans, MRIs, injections, and a misdiagnosis, we discovered that Mum had primary-progressive MS, and not relapsing-remitting MS like we had first thought. However, due to the lack of knowledge of the disease at the time, Mum’s prognosis was unclear. And as a 10-year-old who had already gone through health trauma of my own, to hear those words was terrifying.
I was completely 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 the bumpy road that was MS. 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 her 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 bedroom became a fully equipped downstairs oasis, and our house became her fortress.
Fast-forward to now, 13 years since her diagnosis, and her 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.
Dear mum, this is what I want you to know. (Post continues...)
Our everyday family life has changed in an unimaginable way; purely because the things we all take for granted suddenly feel impossible when someone has a disability. I am riddled with guilt 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. Imagine spending all your time dealing with the fact your body has turned on you and then having to face that exact same anxiety each time you leave the house. That is mum’s life every single day.
Which leads me to my next point. Depression and anxiety are both very common in MS sufferers, and each time I overhear Mum talking about how trapped she feels, I worry. I always worry. So helping her stay positive is my top priority, which is why our nightly phone calls are so important.
Leaving home in April 2016 and moving interstate was, and still is, the hardest thing I’ve ever done. Sometimes I’m proud of myself for following my dreams, but most of the time I'm consumed by guilt because I’m not there for her. 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).
So while my family may have been dealt a life sentence, despite her diagnosis, she’s still my Mum in every sense of the word. While we may not be able to do the things that regular mother’s and daughters do, the things we can do, we love, and I wouldn’t trade those moments for anything.
For more from Lauren Kavanagh, visit her blog here.