Liesa Nankivell

Liesa told her story in a recorded interview.  This is the transcript.

I am Liesa and I’m 30 years old and married to Ashley.  We live in a unit down at Glenelg East, and I have what’s called a dystonic tremor. I was born with an umbilical cord wrapped around my neck, and so therefore I had a lack of oxygen at birth.

Although I struggled a lot with it at high school, I’ve come to learn that that’s basically me.  I’ve got this dystonic tremor with me.  I am a Christian and so I do believe God has given me my tremor and allowed me to have it for a reason.

So my faith brings me a lot of strength.  Before I found my faith, I felt like I didn’t really have much confidence in myself, so I spent a lot of recess or lunchtimes in teachers’ offices or in the library just hiding away from all the students. 

I was basically hiding away from the world. So high school wasn’t easy, but I got through it. The impact of disability on my family has been quite normal because Mum and Dad brought me up just as a ‘normal’ average person anyway. 

Mum was obviously faced with some challenges at school.  I was a lot slower in the way of doing my school work but, no, Mum and Dad basically pushed me through that.  They weren’t one of these people to let you off easily.  I very well remember if I was sick or whatever, Mum would still just send us to school.

Like every teenager I always found I got jealous of my sister who is two years younger; because she had all the friends and she got all the grades, I always felt like she was favourite in ways, but growing up now and looking back I know that’s not the case.  Mum was a beautiful Mum and treated us equally, that was me being a selfish teenager at the time.

With my sister, I looked at her and she had the part-time job, she had the friends, and then when I got out of school, Mum and Dad had a bit more money so because she had a part-time job she was paid and Mum and Dad paid half for her to go on her ski trip, or Mum would buy her a formal dress for Year 12, where I had to use my Year 11 and Year 12 dress. Looking back I know why, because obviously when she was in Year 12 they didn’t have two lots of school fees to pay for.  And we went to Westminster School, which is a very expensive school.

In terms of my relationship now, I have a wonderful husband. He’s not only sensitive and caring, but he’s a big kid and he just makes me laugh all the time.  I’ve got these winter pyjamas that I’ve only just pulled out and they’re ‘Tickle Me Elmo’ and so being a big kid he decides to try and tickle every Elmo on the pyjamas, and of course I don’t like being tickled, and so I’m laughing my head off—we have lots of fun.

My biggest encouragement is my faith in God. I get up every day for God.  With my faith I really feel as if God blesses us with each day, and we’ve got to make the most of the day as much as possible, and He’s the one that gives me strength to push myself. 

A few years ago I went on a fitness weight loss program, and I managed to go down from 87 kilos down to 73 kilos, and through that I’ve got my fitness up because I remember years ago Mum and Dad were saying, “You’ve got to get and do some exercise; get out and look after yourself”. 

Through that I’ve actually taken up with personal training and training to do running. So, I’ve got a fair bit of weight to go, although lot of people say I look fit, so I’ve got the Mother’s Day Classic on Sunday, which is 4.5 kilometres.  I don’t run, I basically run and walk.  Fitness and weights and building strength and getting fit help me a lot.

My personal trainer Jake focused on balance and coordination, and before I did training with him, I couldn’t walk up or down the stairs without holding onto the rail—I didn’t feel confident enough. But now my balance has been a lot better, and I find because I’m fitter now, I’ve got a lot more energy as well. And I feel a lot more confident—it actually makes me a lot happier. I struggle with my disability, and finding work, and I haven’t really had a proper job my whole life, so that’s my dream.

Through having goals with my fitness, and through having a gym membership, I go to the gym three or four mornings a week, so it gives me something to get up and go to, but it also gives me something to push myself toward and to achieve goals—that gets me excited about myself, because when you achieve something, you get all happy and excited.

Currently I am looking for a job. I would love to get involved in office or retail—basically anything to do with numbers.  I loved number work when I did volunteer work at Red Cross.  I did a lot of credit card processing—I could sit down on that machine and process credit cards all day and be happy with that. But simple numbers—not complicated maths.

At the moment one of my goals is to be able to run long distance without stopping, and that’s a big goal of mine, but I’ve got a long way to go in that. Weight-wise, I want to get down to my goal weight, at the moment I’m about 76 kilos, so I need to get down to 65, so I’d say I’m about half way from where I started off.

But it’s the hard part of it now because when you get down to the last half, it’s a lot harder because your body likes to stay the weight it is and I struggle with food—I’m not one to go out and buy chips or buy takeaway, but just having a balance of good food, and being able to say “no” to food is tricky. 

I also struggle with finding different ideas of what to eat for dinner. I do the cooking but my husband does the dishes because scrubbing can make my hands a bit itchy, so we kind of share our work.

I believe the main thing that has enabled me to keep going is having my faith in God and knowing that he’s put me on earth for a reason.  He’s given me different gifts and I guess another thing is that there’s a whole world out there of opportunities you’ve just got to make the most of.

We’re really lucky here in Australia, we’ve got so many opportunities, but we can’t afford to take that for granted, because there are so many people overseas that don’t have an opportunity. It’s like you see it on TV but it doesn’t really feel real and at the same time it’s difficult to comprehend, and so you’ve just got to make the most of what you have here.

Ashley (my husband) and I don’t we don’t have a lot of money, with him being the only one working and he’s only 0.8, but that’s really good because it doesn't let us be greedy, and it encourages us to be grateful for what we do have.

With regards to my motivation and support, I always felt like everything was okay as long as Mum was there.  I always felt like that from a little girl’s up until basically until I moved to Queensland and into a house.

I moved to Queensland for eighteen months to be closer to my cousins. And it was fantastic, my cousin found me a place to live near to where they are and we really felt like that was a blessing from God because she was a Christian and she was about fifteen years older than me, but we got along so well together.

I also made some really special friends.  There were a few people who, I’ve obviously lost contact now, but one of my closest friends—who I still have now—is a friend up in Queensland, Ali.

She’s given me a lot of strength and support over the years, a lot of encouragement. She’s a bit like a rock I guess you could say.  She came down for our engagement party, and she was a bridesmaid at my wedding, and I remember asking her a few days beforehand, “What do you really think of Ashley? From your eyes, do you think I’m doing the right thing in marrying him?” 

And she said, “You’re just like two peas in a pod”.   Obviously, I knew from that stage that I was doing the right thing because it was a few days before the wedding, but I really felt like I needed that encouragement from her.

I’ve got a really good encouraging neighbour, Julia.  We don’t really catch up socially as friends, but we catch up and talk as neighbours.  She is really encouraging.   And then I’ve got a lady, Margaret, who I do discipleship with, which is like Bible study.

I’ve also got few close friends here and there, but I’m more a one-on-one person than a group person.  I think that’s because of my disability.  Earlier in my life I used to be happy hanging out with a group I had when I was about 18 or 20. 

I had a nice group of friends then, and one of my closest friends Sarah is still a really close friend, and my friend Brenton has been a big support for us.  We knew that we were like a brother and sister team.  I never really had a brother growing up, so I kind of adopted him as my brother.

In the future I would probably like to have a child as well. Although I think because of health reasons, we’ve got a few challenges to have a child, but nothing’s impossible.  We'd probably like to have a child sooner rather than later, my husband’s 43 at the moment and I want him to be young enough to enjoy being a dad.  If it doesn’t happen, there are plenty of other things in life to enjoy. Like I said to Ashley, if we don’t end up having children, one day we’ll have to get a dog or two. 

In terms of dealing with my disability, well you find different ways of coping, because I’ve had my disability my whole life.  It can drive me nuts at times, but you just have to learn your limitations, and you learn how to go around your limitations.   When I write, I’ve got to have my other hand there to support my writing otherwise I just can’t write that well. 

But also through fitness, and especially through running training, you’ve got to learn to push yourself further—we put our bodies down, especially in my case, my body can probably do a lot more than what I push it to do.  And that’s exciting because once you push, you find out more and more about what you can do.

I find that if you don’t feel positive about yourself, you can get very depressed and frustrated, and I’ve seen people with depression and it isn’t fun and that’s one thing I definitely don’t want because I want to enjoy life.

I was proud of losing that weight and getting my fitness back on track, and I’m just proud of the positive attitude I have.   Ali always calls me her “ray of sunshine”.  I think that attitude comes from my faith because it’s like no matter what, I know that God loves me and He’s created me as who I am, but another thing that I find is just be happy about all the little things that go on in life.

We look forward to Mother’s Day as we take Mum and Dad out for tea, and it’s only something little, but I’m really looking forward to it. And I always feel that I am more motivated to do work when I’m busy and I’ve got a lot to do, and when I’m at home, I’m more productive.

For people living with a similar situation I feel the first thing you’ve got to do is get out there—you’ve got to get out and find the support network you need, because a support network is something everyone needs. And you might find them through volunteering, through going to a church, through going to a gym and maybe getting a personal trainer.

I think a personal trainer is a lot of money, but at the same time if someone is spending a bit of money on going out and eating, or going out and playing on the pokies, or going out and drinking, to me, having a personal trainer is the best way for me to spend money on myself.

And also another thing is to say to yourself, “Okay, well I need to do that,” and then give yourself a reward of something to look forward to. Motivate yourself to get through the things that you don’t want to do. 

The last thing I would probably say is that having a disability shouldn’t drag people down, but the way I see it is, it makes a person who they are, and for us, we’re lucky because we do have disabilities—we have a gift to share with other people in some ways, rather than having it be something to drag us down.  We should really think of it as a blessing in disguise, and really use it, and I guess this is a good way to use it, by encouraging others.

Ali said, “I look at you and I see someone who I thought couldn’t drive a car, or someone who I thought couldn’t do running, and you just surprise me,” but then also I won’t ever forget what she said next.  She said: “Us, who don’t have a disability, you encourage us even more, because you achieve.  Because you do have more hurdles to go over, but you get over those hurdles and you achieve them.” 

And that makes life even more exciting because you achieve them with a disability rather than without one.

Postscript: Since telling this story Liesa has been successful in gaining a job as a Patient Services Assistant at Flinders Medical Centre in Adelaide.

© Liesa Nankivell 2011. Except as provided by the Copyright Act 1968, no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the author.

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