My name is Michelle Durbidge, I’m a 46 year old single mother, of two beautiful young people. My SMA story began much later in life, I was 30 when I was properly diagnosed.
Years earlier my older sister Emma, then in her late 20’s, started showing severe signs of muscle weakness. Back then the first suspicious was MS. Then they thought limb girdle muscular dystrophy. Finally years later, bloods were taken and sent to Sydney and the SMA diagnosis was finally made.
Both our parents were aware something was not quite right with us at a young age.
We were slow at achieving our milestones, e.g. crawling, walking, sitting up etc.
Throughout primary school, teachers had voiced concerns to our parents, of how we ran, our open gate and inability to participate, (as other children did) in sports and other physical activities.
High school was a huge struggle with any physical education and often caused great anxiety. We were labelled as just being lazy! I was often laughed at by others and was so embarrassed at how slow I was. I couldn’t understand why I fell and tripped over, which was a daily occurrence. Getting around the school grounds with all the stairs, always seemed such a challenge. Back then the Doctors checked out our spine and feet and we were given the all clear.
When I was 18 years of age, I actually had a Doctor have a go at me for my legs being so weak, she told me to exercise and that I should be ashamed of myself. Again, making me out to be lazy. I still remember her name to this day. I constantly felt like I was a lazy person and never understood why my very overweight Aunty could squat and I couldn’t. I became a hairdresser straight out of school. By my late 20’s this became increasingly difficult to continue. By 30 I had to give it up as I was unable to keep my arms up and long days on my legs were just too painful.
Having SMA caused me so many challenges being a young mum. Unable to hold your children as babies for long, too scared to walk with them in your arms. As you’re fearful you’ll trip and fall over, with them in your arms, which I did often. Not able to run around with them, take them swimming, to the playgrounds etc. What I can tell you is both my children were very well behaved, as they had to be, as I couldn’t chase after them. So when mum said stop! They stopped.
For the past 12 years I’ve been working as a Special Needs Teacher’s Aide and I’ve now had to come to terms with the fact that I physically can no longer do this job. At the end of term 1 (2017) I finish up! I will be a 46 year old single mum, with two kids, living on a Disability Pension, hoping that someone will employ me! I can assure you I’m not ready to be unemployed. I still have so much to give. I try not to let SMA define me, however at times like this, it’s SMA one, Michelle none.
I’m looking ahead now, at my new chapter, living with SMA. I’m extremely grateful that I’m still walking, able to live unaided. However I know this won’t remain the same. My two children do need to assist me now with certain daily chores, e.g. washing, cooking, shopping and vacuuming as I struggle with the weight of so many things.
I’m coming to terms that I indeed have a disability, however wish the ignorance of others could identified that in me too. You see, one of my biggest struggles is people unaware of my limitations, people only see what they see. I’m walking so therefore I don’t have a disability, however I have to drive a hand control car, access disabled toilets, I can’t get up the stairs to see a movie with my kids, as there’s no hand railings.
I can’t walk on the beach, swim in the sea, walk too far or go to events, simple pleasures of life. I have anxiety going to places I’m not familiar with. Will I be able to access it? Can I get out of their chairs? How far do I need to walk? Is the ground safe for me to walk on?
By reading this, if I can give you a small insight into life with SMA, I hope you can understand early diagnosis is a must and early treatment is a given.
We all deserve to be given the best chance at a normal life and if I could stop my SMA deteriorating my body, I’d jump at it! I want to work and support my kids, I’d give anything to have a swim in the ocean and a walk along the beach with my kids. I just want to live my life as it is in my mind, instead of my body making me live this life.
Thank you for reading my story.
Hi, my name is Jazlyn, Michelle is my mum.
All my life my mum has had SMA. I never really understood what that meant until a few years ago. I knew my mum had something wrong with her muscles but I never understood how bad it gets.
Over the years as mum got worse my brother, Josh, and I had to adjust quickly. Whether it be just helping her with shopping, washing, vacuuming or lifting her legs up on the couch.
It’s also a bit scary that I carry the gene. It could impact my children’s life when I choose to settle down.
Although mum has a lot of limits, SMA never stopped her. She always finds a way to do something no matter what.
I hope this helps you understand a prospective of a young teenager who lives with a person with SMA.