Laughter really is the best medicine
Hi, I’m Marie 😊 I want to share my story and recent experiences of first-time independence to hopefully encourage other adults like me to leave their fears behind and break out of their comfort zone. If you do, you’ll surprise yourself and I promise you will never look back!
I’m 46 years-old and live with an undiagnosed and rare form of neuromuscular condition, which causes severe muscle weakness all over my body. I have seen many doctors over the years and there have also been periods of not seeing a doctor at all, as I was just fed up and over it. Ultimately though, I really do want to get to the bottom of my disease, so for the past few years now I have seen Professor Reddel at Concord Hospital, who is helping me with genetic testing and getting a muscle biopsy (if I have enough muscle left!) to try and crack my mystery case.
In my early years, I was a healthy and very active child. I did ballet, tap, jazz, gymnastics, piano, tennis, and even tai chi! When I was about 10 years old, I got very ill with the measles, and even though I was vaccinated, things just started going wrong from then on.
I noticed I couldn’t hold onto the equipment at gymnastics, had stabbing pains in my chest when I danced, stuff like that. It was basically a slow progression of not being able to do something that I could previously. It was a scary and challenging time. I was able to finish school and get a fashion degree at TAFE and even managed to hold down my first and only job for six months after I graduated. But as I got older, my body weakened, and I eventually had to stay home with full time care from my Mum.
Which brings me to telling you about my mum, my carer, my best friend. It has always just been Mum and I, as we have no family here in Australia. It’s hard to describe my relationship with Mum because we are so close and love each other very much, but I also feel like because we relied on each other for everything, it was suffocating at times. I was Mum’s number one priority, which left her with no time to just be a Mum or to do much for herself like go out and make friends. We just went into survival mode and did the best we could for so long on our own.
But, in 2017, a friend told me about this thing called the National Disability Insurance Scheme (NDIS), so I applied, and I received a plan with funding! I couldn’t believe it; I had no idea what to do or how to spend this money I had been given. Gradually, Mum and I got our heads around it and reluctantly started to let new people into our lives. It was no longer just the two of us.
I now have a wonderful team of three ladies I call my “Charlie’s Angels”, who have taught me a lot about becoming more independent and facing my fears. Slowly, but surely, both Mum and I are learning to do things for ourselves, which led me to signing up for Muscular Dystrophy NSW’s (MDNSW) Peer Connect Weekend Retreat in Newcastle in May this year (2021).
One of my carers, Natalie, heard about it and because I’m a MDNSW member, I was eligible to attend. The idea of being away from my home and my Mum for that long terrified me! I have never done anything like this since I lost total independence. I had a hundred and one scenarios going through my head, like what about going to the toilet, the shower, bed, getting around? But before I knew it, I was on my way with Natalie headed for Newcastle.
I’ll admit, the first night there I was still quite scared and reserved. But the next day, I felt completely free, and happy – so happy! I felt alive, my adrenaline was pumping, and I loved meeting new people and just laughing. I can’t remember the last time I laughed that much. My cheeks hurt for days after I got home!
It was a weekend of so many firsts; I sat up on a stool; I formed new friendships; picked up lots of information just by listening to people talk about their lives, equipment, bungles, the same frustrations I felt.
One big thing I knew I wanted to try for the first time while at the retreat was a power wheelchair. I’ve never used one before – I get around with a walking stick mainly, because I worry that if I do use a power wheelchair, I would lose my mobility. It’s like a surrender, another loss. But in fact, it was the opposite! Once I got the hang of the controls and stopped bumping into things (and people), I just wanted to keep on going. I could go where I wanted to go. I could get up a hill and not miss the view from the top. I felt the air in my hair. I even made Natalie run after me for the very first time! It opened my eyes to new opportunities and experiences, and without it I don’t think I would have enjoyed myself nearly as much.
The biggest first for me though, was being away from my Mum for the first time in 25 years. It was a very big accomplishment for me. I couldn’t believe I’d actually done it. I survived without Mum, and she survived without me. I felt like a person again, not a patient. I felt free!
Being surrounded by a group of people who understood and supported each other gave me the confidence I needed to get through. And they made me laugh and feel the happiest I’d felt in a long time. I forgot about my disability and just had fun, after all, laughter really is the best medicine.