Kim

Kim lives in New Zealand and is diagnosed with autosomal dominant centronuclear myopathy.  Below she writes about her life.

Kim

Kia Ora, my name is Kim Clark, also affectionately known as Kimbo. This is the story of Me.

Background

I was born in Auckland New Zealand. I was born with two older sisters and an older brother. My Dad is NZ European and my Mum is NZ Māori/European. When I was born by c-section, I had to be resuscitated. I couldn’t breathe. My body was floppy, and doctors didn’t know why. I spent most of my first year of life going in and out of the hospital.

Eventually, I had a muscle biopsy and the doctors examined my muscle to find I had a condition called Centronuclear Myopathy. This means the nuclei in the cells are abnormally located in the center of the cell and this causes muscle weakness. Doctors had little information about my condition. There were a lot of unknowns for the doctors and so then too, for my family. Even though there were unknowns, I think this was great for my parents because it meant my life wasn’t limited to what the doctors knew, and therefore what I would be able to achieve. They themselves didn’t know my limits and so this gave my parents freedom to find out my limits on their own.

Outlook

From day one, growing up with three older siblings, in my house, “you can’t” was never spoken over me. Growing up with three older siblings, I did what they did, and I was given the same opportunities albeit in a modified capacity. My parents went out of their way to include me in everything we as a family did. Even now, if one of my siblings wants to go to an event, trip or show, they always check to see if the rest of the family doesn’t want to come along too. We move as a pack and no one gets left out. My parents have brought me up saying that nothing is impossible.

disAbility

When it comes to disability, for me, I never say “I’m disabled”. I despise that term because the term itself is so limiting. When I speak, I purposely say “I have a condition called..”, “I have an impairment..”, “people with impairments..”. For me, “disability” is just a negative label. If someone tells you they’re disabled your thoughts aren’t going to be “they can achieve anything” it’s more likely going to be the opposite.

One of my biggest dreams is to live in a world where all people with impairments are seen as having potential. To live in a world where no one is discounted because of their abilities or inabilities. If I will do anything in this world it will be to work towards changing people’s perspectives so that when people see an impaired person they would see what they can do before what they can’t do.

Faith/Jesus

I have been involved in church my whole life. When I was born there was so much support for my family from people at church. People would cook meals for my family and would look after my siblings while my parents were in the hospital with me. My church family was always there for me and my family. I’m so grateful for them.

I went to church every week and learnt about Jesus. When I was 11, I attended an Easter Camp where I gave my heart to Jesus and made Him Lord over my life. I wanted to be a part of His family and be His daughter.

Over the years my relationship with Jesus has grown deeper and I have come to trust him in everything I do. When I’m going through hard times, I remember that He holds everything together and so I need not worry about anything.

One might ask questions around being in a wheelchair and “how are you so positive?” I would say that I am positive because in God’s Word it says that “I am fearfully and wonderfully made and His workmanship is wonderful”. This tells me that when God created me the way He did, he didn’t make mistakes. I believe God made me so that I might be an encouragement to you.

Life

With the help of my family, my friends and Jesus I have been able to achieve so much in my life. I have lived life to the full. Even when people don’t build ramps to footpaths, my siblings lay their feet down so I can roll over them as a ramp and get up bumps. Such a sacrifice.

With the help of my family, my friends and Jesus I was able to complete my degree in Applied Management from Manukau Institute of Technology. My major was in accounting but from working as the Disability Representative at MIT for three years of my study and advocating for people who otherwise would have missed out on opportunities, I found this way more enjoyable than the actual degree. People who have impairments have something to offer to society and I long for the day when all people know this and see their abilities first.

With the help of my family, my friends and Jesus every difficulty I’ve faced in my life I’ve been able to overcome. I’ve had to deal with so many people who first off say “no you can’t”. With the help of my family, my friends and Jesus I can say “how I can”.

Without the help of my family, friends and my Jesus I would have nothing.

I believe in JOY and I believe that true joy comes from Jesus. Difficulties WILL come in life – even God says they will, and we have a choice in how we respond. For me, I choose joy. I choose to be grateful for what I have and thankful that God walks beside me in my difficulties.

Choose JOY.

This is the story of ME.

To learn more about Kim visit the
Joyful Always Blog.