Steptember 2018: Inspirational Nicole Lu Talks About Life With Cerebral Palsy

Sarah Harris

Studio Ten Host

17/09/2018

Inspirational Nicole Lu Talks About Living A Fulfilled Life In Spite Of Cerebral Palsy And How Joining In On The CPA’s Steptember Campaign Helps raise much needed money for scientific research.

Nicole is a 21-year-old university student and the daughter of Vietnamese refugees. The Cerebral Palsy Alliance has been an invaluable support to her and her family.

Nicole was born with a substantial paralysis down one side and without extensive physio faced the prospect that she may never walk or talk. There are more than 34,000 Australians living with the disability, which affects body movement and muscle co-ordination, and there is no known cure.

“We can make a difference,” she tells Sarah Harris in our video series to help promote the Cerebral Palsy Alliance’s annual Steptember fundraiser. “I hope you get behind this initiative so you can see what so many great people have to offer to this world.”

I’m not sure when I became aware I had cerebral palsy (CP) but I remember crawling around the house, aged two, and even then knowing something was different because I couldn’t coordinate my arms and legs. I’d do two legs or two arms at the same time.

In retrospect I was lucky doctors diagnosed me within days of my birth. We need a lot more research into early detection as it means you can start intervention as early as possible to prevent future problems.  I was put in contact with the Cerebral Palsy Alliance (CPA), started therapy and they’ve been looking out for me ever since.

I don’t know what we’d have done without them. My parents had come to Australia to escape the Vietnam War and having a child with CP was one more difficulty for them to negotiate. English was their second language and not only did they have little idea of what support was available, figuring out how to access it was virtually impossible.  Having the CPA meant they had a one-stop shop to go to for help

My cerebral palsy affects all four of my limbs, limiting my movement and causing rigidity in my muscles.  Every action requires enormous effort and energy although I suspect anyone with CP would say that.

I try to use my walking frame as much as possible to preserve my mobility but simply walking along a corridor or pulling out a chair to sit at a table is hard. When going out for lunch, I can’t simply walk up to a counter and carry a tray. I don’t even have the strength and coordination to cut up my food so I have to be strategic and make choices so that I can eat without assistance; that means a lot of sandwiches! Growing up with a condition that imposes limits mean you find a lot of life hacks like that to help you get by.

I’ve found having CP very isolating at times. We’d often have family outings and picnics and I was desperate to join my cousins and brother kicking a ball around or swinging on monkey bars but I’d always have to sit it out. It was the same at school where I was left out at playtime and could only sit on my own and watch.

Nicole Lu Talks About Life With Cerebral Palsy

The incredibly inspirational Nicole Lu Talks About Life With Cerebral Palsy -and why Steptember is so important

Another time, my friends invited me to join them on the sports oval and I had a manual wheelchair. For some reason, no-one realised I needed pushing and it was five or ten minutes before they realised I’d been unable to follow them and returned to get me.

“I’m so sorry,” they kept saying but these moments cause mixed emotions. I knew they weren’t being mean, it’s just that not everyone gets it.

Thankfully these kinds of things happen less now as CPA has equipped me with a power assist wheelchair so I can keep up with everyone.

Despite my disability, I’m not sorry for myself.  My family came to Australia with nothing so I’ve always understood you have to work hard to achieve what you want. Giving up isn’t part of my vocabulary and I don’t let others’ opinions limit me either.

For instance, when Mum wanted me to leave a support unit to go to mainstream school, a teacher advised against it, writing down a list of all the things I couldn’t do.

I was only nine, but when I saw that list, I immediately vowed to show that teacher she was wrong.  I will never forget her face as I worked through each item, showing how capable I was. It was the best feeling ever.

As well as funding my wheelchair and providing a variety of physical therapies, CPA has also helped me navigate psychological issues as well.

 

At High School, I facilitated a social inclusion program partly run by CPA and that allowed me to show that my disability is only one small part of me. There is much more to me as a person.

The school, in turn, really acknowledged the achievements of students living with disabilities and showcased them to the whole school community.

I’d compete in almost every swimming carnival and although I was always last, I’d hear my classmates cheering me on and the teacher calling out: “Nicole is nearly at the wall!” and the cheers getting even louder. Afterwards everyone would come up to tell me how great I’d done and I’d feel so happy.

In 2013, I also took up bocce. One of the students at my school is training at CPA and is so good he looks set to compete in the Paralympics. We’re great mates and he offered to teach me the skills so we could enter some school competitions as a team. We trained pretty hard and ended up getting a bronze and two golds. Recently I even went abseiling. My legs really really ached after that!

I am at Macquarie Uni now studying a Bachelor of Social Science, Public Policy, Law and Governance and yet again, the motorised wheelchair I received from CPA has made the world of difference. I don’t think I’d ever get to lectures on time without it and I’d never enjoy a night out with friends it would be too much for me. It cost as much as a car and without CPA’s assistance I would’ve waited years to get one – if I’d got one at all.  I’m not complaining. I’m just saying that’s how it is.

After uni, I hope to work in the public service, drafting policy in the area of disability. I’m already an advocate for children and young people on the Youth Advisory Council so that ties in really well with the practical element of what my career could look like.

Eventually, too, I hope to move out of home and, again, I can turn to CPA for help with that as they have adult programs and build homes for independent living. I’m using their youth services now, learning to cook and discovering the implements that make that possible. I can’t open a can of food with a standard opener for example so they’ve found me alternatives.

I’ve been working at CPA and seeing from the inside how much they do inspired me to raise money through Stemptember myself last year. Doing 10,000 steps every day was too much but I did my best, a mix of walking, swimming and gym. There are about 40 activities in all that you can use to calculate your total and every cent raised makes a difference.

CPA has certainly made a difference to me.

To register your company’s support, and for more details on this worthy cause, visit www.steptember.org.au.

Your Steptember kit, consisting of a pedometer, lanyard and booklet, will be delivered right to your doorstep.

Every dollar you, or our company raises, will provide vital equipment, therapy and services to children and adults living with cerebral palsy. Or, you can choose to raise funds for ground-breaking research into the prevention and maybe even one day a cure.