Amazing AMCers: Meet Nichola Smith

I recently “met” a fellow AMCer and despite the fact we live in different countries, we were instant buds. Through our chats via messenger and email it was like we were the same person. She understood me. While every AMCer seems to have their own unique spin of symptoms and severity, we still shared much in common.

Nichola found me on YouTube and when she showed her flatmate the video of me doing my hair, they laughed since she wondered what the heck Nichola was doing when she found her lying on the floor doing her hair for the first time. It feels good to know there’s a group of girls out there who share my ponytail woes.

Without further ado, let me introduce you to Nichola Smith, a 30-something gal from New Zealand. She is a nurse who focuses on the education side of the profession. She is the epitome of the word amazing.

Her life motto is “Use Your Voice.” We are given a powerful voice that WILL enable others to achieve, and the voice she has is no quieter because of AMC.

I asked Nichola a few questions about her life with AMC. Here’s what she has to say:

ME: Does anyone in your family have it?  Did your mom know that you had a disability before you were born?

NICHOLA:  Mum never knew I had physical issues, but she did notice that I was much less active in utero, and she just had a ‘feeling’ something wasn’t right. I was born by emergency c-section 8 weeks premature, and fought for my life. We obviously know how that one turned out. I still have my very first casts, they are tiny!!! The doctors and my earliest orthopedic surgeon told mum and dad not to have any more kids, as I am the eldest, but I have one younger brother and two younger sisters who are all fine.

ME: What is one thing you have always been envious to do?  

NICHOLA: One thing I have always been envious of is being able to do my hair. Hands down this is the biggest thing I think. I’ve always had boring ponytails, and they are very difficult to do at the best of times. I would LOVE to be able to put my hair up wherever and whenever I wanted without lying backwards!! I’m always captivated by others when they do this.

ME: What is one of your fears? 

NICHOLA: One of my fears is if we were ever in a war and I wouldn’t be able to run away, or I’d be a burden to others. This terrifies me.

ME: Do you want to marry a person with or without a disability?

NICHOLA: My ex-husband was ‘normal’. He was awesome, helped me out heaps and was very patient. He got very good at doing my hair. Over the years I learned to let him help me more. Admitting we need help is very difficult. We are now divorced and I live with my border, Chloe, my dog and 3 cats.

ME: Do people often ask about your disability – how do you explain it?

NICHOLA: 99% of people presume I have rheumatoid arthritis, and they ask me about it. I rarely correct people now. People can tell there is something wrong with my feet/legs (I don’t always use crutches), and I answer questions. The most common one is if it is painful. I tell people that my feet do get sore. I don’t like talking about it too much as it draws attention to me. I just get on with it despite the issues.

ME: Are the any special items that you use?

NICHOLA:  I have a Tom, a Dick, and a Harry. They are my shower and toilet chair and my rails outside. My crutches are called Betty and Bertha. I hated having to use all these things, so I figured if I gave them a personality it might make me feel better about it.

ME: If you could be granted one wish and could be “normal” would you do it?

NICHOLA: Granted one wish??? Be pain free. Hands down. The pain I get is awful, it radiates, the nerves then get confused and cause headaches, pelvic pain and back pain. I take heavy duty pain relief just to walk to the toilet in the morning. I am under a pain specialist. My feet swell enormously, go bright purple, and water, air, socks, bed sheets, etc hurt more than anything.

One frustration, is even medical professionals get it wrong, when it is written all over my medical notes.  If they are not sure, all they have to do is ask!

2 thoughts on “Amazing AMCers: Meet Nichola Smith

  1. Cool you guys! Do you have any idea if there is a website /blog for people with Friedreich's Ataxia? My worst fear is growing older and losing lung function. But I really don't have to fear because I know perfect love, and when I'm gone it won't matter how much I've gone through in the meantime. 🙂


  2. I have known Nichola all her life. she is a wonderful bright star in anyone's life. it's never been a bed of roses for her, or her family, but they have bloomed the longest in my life and I thank God for them all. If Nicholas testimony here can help anyone in any way, matter or form that would be awesome. May the words reach those who need to know, they are not alone


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