The doctors, my parents, and my big brother had no idea what was about to hit them when I was born in the ‘80s. I mean, you could say that about any baby arriving in the world, but it was definitely the case with me. My mum had laboured for hours with a natural labour and no progress, if they’d known, my mum could have had a C-section, which would have been a much safer option for my birth.
My parents have told me this story so many times, how shocked they were when I was eventually delivered. My dad wasn’t great with blood at the best of times and was at the ‘business end’ at the moment of delivery, so it was no surprise his entire six foot two inches hit the delivery floor in a faint at the first sight of what everyone assumed was going to be a “healthy baby girl”.
Immediately after delivery, I was rushed to Princess Margaret Hospital, a place I spent more than my fair share of time in during childhood. I presented with a growth on my back – something no one was expecting. And as my mum recovered at Osborne Park hospital, I had immediate surgery to sew up my back (which gave me a lovely, big scar) and at just a few hours old, had my first brain surgery to insert a shunt so the Hydrocephalus I was diagnosed with was kept under control.
My life-long journey of living with Spina Bifida was just starting.
My diagnosis was of the most severe form of Spina Bifida – Myelomeningocele. Still today, the occurrence of Myelomeningocele is a possibility in Australia. In the US in 2010, approximately 60 babies from every 100,000 births are diagnosed with this severe form of Spina Bifida.
I can only hope medical professionals have stopped giving parents options like mine were given:
Let me go, or let me live.
To this day, I am thankful they never gave up on me. Instead, Penny and Murray (my parents) gave me the best start to life.
I think it’s important to note I grew up considering myself as “lucky”.
That’s something my family taught me; there were always children worse off than I was. I don’t know if this is a standard, accepted way of parenting a disabled child now but I have to say, it worked for me. Because my childhood, by my account, was pretty wonderful. I had fun, I did consider myself lucky. I had family and friends, I loved life and still do.
I may have had weekly therapy at Princess Margaret Hospital including Occupational Therapy, Physiotherapy and numerous outpatient appointments with Neurosurgeons, Urologists, Paediatricians but when you’re growing up you don’t really question how different your life is from other children’s until you’re old enough to notice differences.
When I was three years old, my little sister came along. She couldn’t be rough or play with me like a ‘normal’ sister would, but that did not stop us from forming a beautiful sibling relationship – and now she is my best friend as well as sister. I remember primary school being uneventful; I was well liked and fairly healthy and was able to walk with an aid. At ten, I fell and broke my knee, due to the symptoms of Spina Bifida, I walked around on a broken knee for two full weeks.
No one could possibly accuse me of using my disability as a way of getting out of things, I don’t think, only when I was eleven, my Year 6 teacher wrote in my end of school report;
“Amber uses her disability as an excuse for not trying.”
Hindsight is something we’re gifted as adults and I like to think I’m pretty considerate of what I’m able to do and not, and how I move through the world as a disabled person, so I can clearly state I never used my disability as an excuse for anything. Certainly not for “not trying”. I’ve been trying my entire life. And continue to do so.
That teacher, in fact, was using an excuse of not understanding my disability and not taking the time and making the effort to do so, for not comprehending why I was taking so much time off school.
If you are a parent, or teacher, or carer for someone with a disability that impacts them participating in regular schooling, or life, keep in mind: the words you use to label a disabled person can stick with them for life.
In my case, I tell this story to highlight how very wrong that teacher was and use it as motivation when I do feel tired, or overworked, or overwhelmed.
My disability has never been an excuse. However, it has sometimes been a reason.
Year 7 – my last year of Primary School – came around and I was the sickest I had ever been. I had three major surgeries on the shunt in my brain, shunt surgeries are a necessity for growing children’s brains and my first one didn’t go to plan. I remember that year as full of issues that just seemed to keep coming, but my spirits were always positive – I wasn’t going to let a few brain surgeries get me down or stop me from living my life.
My youngest brother arrived when I was thirteen years old and in my first year of High School. As a typical, hormonal teenager, I made his birth all about me. How could my parents have another baby when they were meant to revolve their lives around me?! (I now have a teenager, so I guess I’ve learned my lesson!) When my mum became heavily pregnant, she stopped being able to stay overnight at the hospital with me when I needed to be in there for long periods. I grew up fast, it felt like overnight, because being alone in a hospital without the person who has constantly been your companion and advocate can feel really scary.
It’s not uncommon for people with Spina Bifida to need multiple surgeries as they enter their teen years and by Middle School I’d lived through multiple brain surgeries, plus started needing surgeries on my bladder. I was fifteen, I was so tired and I believe I was depressed. Because I’d learned from an early age to feel gratitude for my life, I turned that into needing to make the people around me feel like I was OK, so I slapped on a happy smile and told no one about my feelings of depression. In reality, I felt like I had no one. But on the flip side, I wanted everyone to think I was “fine” because they’d stop asking questions and annoying me.
During one major bladder surgery, in recovery for 2 weeks, the Physiotherapist constantly came into my room wanting me to get back up and get mobile. I decided, in that state, there and then, I didn’t want to participate in Physio anymore so decided I was done with walking.
I felt like I needed to focus on staying alive and recovery, not continuing to try to walk.
There’s a reason we protect teenagers from making major life decisions, and now I have a teenage son of my own I truly understand how important this is, but at the time I had no idea of the importance of mobility and what it meant for the rest of my life.
So began my second journey with Spina Bifida.
I became a person in a wheelchair.
I’m now thirty-five and an expert wheelchair user. I have a beautiful son, I’ve been married, divorced, re-partnered, I’ve studied Early Childhood and Psychology, and now use my influence online to showcase accessible, inclusive choices to people all around Australia.
And I still think I’m lucky.
You can find me at:
www.instagram.com/wheeliegoodperth
I use disability first language in this article purposefully. I respect your choices to use people first language, also.
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Written & Story by Amber from wheeliegoodperth ~
Published by Sangeetha Gowda ~
Diversity Australia Magazine 