My Story …because that’s why you’re here, isn’t it?

Posted on by Megan McNally
Since Ataxia affects each person differently – depending not just on the type, but the age of onset, progression rate, family history, other medical issues, current lifestyle, etc. – I’d like to share my story with you.

Basically, I had a completely normal life growing up:
I was captain of my high school’s varsity gymnastics team, I participated in national cheerleading competitions, my family went on extensive vacations to various places each year, I earned both a bachelor’s and master’s degree from SUNY Geneseo…

But around age 20 I noticed I couldn’t run as well as I used to.

And then walking in heels turned into more of a struggle than it naturally was.

I’d sit in my car before work, waiting to go inside until I knew I was completely alone so no one would see me go up the stairs because it took me a long time and I’d get out of breath.

When I coached, I’d have my gymnasts demonstrate drills that I could no longer do without losing my balance.

I knew what was happening – I had watched my dad go through the same thing.

Just not quite this early, and not quite with this steady of a progression.

You see, my dad had SCA. As did my aunt. And my uncle. And my grandpa had it. And his dad, too.

It’s a hereditary disease; children have a 50/50 shot of inheriting it from their parent, and then could pass it down even if they don’t show symptoms.

I knew this. And I know there isn’t a cure. So I didn’t rush out to get a diagnosis, because what’s the point?

But in 2015 my dad died, and the stairs at my school’s graduation didn’t have railings so I had to awkwardly ask coworkers for help, and then my fiance and I were trying to buy a house and would’ve preferred a ranch but a 2-story would do for now, and I got denied entrance to a bar because the bouncer thought I was drunk because I couldn’t walk well…

So, I saw a specialist and was genetically tested and diagnosed with Spinocerebellar Ataxia Type 1 when I was 26.

I’m the first person in my family to be officially, genetically diagnosed.

My life isn’t bad – my symptoms are frustrating and tiring and annoying, but I have a good life.

I’m married to my best friend – a man who has so far stayed true to his vow of pizza once a week and cross-country road trips every year.

We have a perfect one-story house, a fur baby German Shepherd named Bogart, and the most awesomely supportive group of friends and family you could imagine.

Oh, and a toddler. We have one of those, too.

I expected most of what I’m going through now:

I went from using a cane, to a walker, to a wheelchair. Running and jumping are terms of the past.

But I didn’t realize writing and other fine motor skills would leave me so quickly. I didn’t know my memory and concentration would be hazy at times. I didn’t expect my voice to be shaky and pronunciation to be flawed. I didn’t think tremors would cause me to need lids on my cups just yet…

People only see the wheelchair, so they think it’s just a mobility thing. I know I did, even with my super personal view of it all.

But SCA affects your cerebellum control over ALL muscles, so it’s so much more than meets the eye.

The fact that it’s progressive adds another layer of surprise – I can do something one day that I can’t do the next. And I have no control over it and no premonition.

So that part kind of sucks.

But here’s the thing –

I’m a decent writer and a decent human being (though some may argue both accounts) so I wanted to make a blog to show everyone that people with diseases and disabilities are not defined by those things.

I want to give other English teachers some strategies to try in their own classrooms. I want to encourage people to explore and go on adventures. I want to motivate other parents with disabilities by sharing stories and tips.

And I want to raise awareness about this shitty disease because that’s the first step in finding a cure.

23 thoughts on “My Story …because that’s why you’re here, isn’t it?”

    2. You are an awesome inspiration to everyone! I cried throughout your story and know some of it already. I know your Aunt Maureen and my granddaughter loves you to pieces , Skye Colantonio. I’ve heard many stories about you from Skye…you have taught her so many lessons on how to be a strongwilled,hardworking,intelligent ,woman with a heart of gold. Thank you for being part of my granddaughters life and impacting it so positively.God Bless you Megan. Notre Dame High School is so fortunate and blessed to have you as one of their educators that instill pure positivity and wisdom on our kids of tommows future. You are a gift to all you touch. Mary Foley

      1. Wow. Beautiful story. I wish you the best on this journey. So encouraging you are ❤️

  2. Thanks for sharing your journey – I’m looking forward to reading all the posts! Inspired by your approach to life.

  3. Meg, we haven’t seen each other since High School but your mom was my sons kindergarten teacher (she’s an angel!!!). I always asked her how you were doing and was so sad to hear you were diagnosed with this horrible disease. I love that you made this blog and opened up your life to others. I can’t imagine the daily struggles you go through but you are so brave and inspiring! Thank your for sharing your story.

  5. I am so glad you are sharing your talent of writing with us all- while inspiring people along the way! You make me so proud and I look forward to reading so much more! Love you 💗

  7. You are amazing for sharing your story. I couldn’t agree more that a person isn’t defined by their disease. I wish I could have the courage or words to write. You are inspiration! Keep up the fight and be yourself. Your beautiful on the inside and out.

  8. Thanks for sharing your story, your positivity makes the rest of us rethink what we have. “Stay strong ” Dawn erhardt

  9. Megan, you are amazing! Thank you for giving us a glimpse of your world. You come from a great, hardworking, STRONG family and you definitely are showing some of that strength now! Thankful you have your best friend by your side on this sucky journey. You are right, you are defined by your disease. Keep showing and telling us what you are! Big, big hugs😘❤️🙏🏻

  10. Your positivity and perspective is a lesson for everyone no matter what they are dealing with…and I can only imagine that God is smiling down on you for showing the world what a true brave warrior looks like!!! Amazing and inspiring-keep writing!!

  11. Hey Meg, I’m right there with you sweetie. As much as it is a part of your life it doesn’t define you as a person per se. But as each day passes, there’s maybe a little adjustment here… a little adjustment there… that continue to grow in numbers. You’re right: sucks! So, we pray for a cure, good medicine… And for all of the GOOD things that we have in life to continue. Keep sharing… Please!

  12. Wow Meg, thanks so much for sharing this. I remember my mom telling me similar stories as she started noticing symptoms of her MS; she has Primary Progressive MS, so it’s the kind that just continues to get worse. I’m looking forward to reading more – keep it up!

  13. 😞 very sad, I also have SCA 1 late onset, I am 60 years old.
    In the last couple of years I have been in and out of hospital with such pain in my tummy and I also had a heart attack. Sending lots of love ❤️

  14. I did not read this in 2019. I’m so glad you have a blog and write so fluently. I love reading your post about you, your life, your son, and the world!
    You inspire all of us😊

  16. Meg you are a true inspiration! Thank you for sharing your journey with all of us. Keep up the good work. Tell the husband hello!

  17. Meg,
    My Dorothy, my former student, amazingly inspiring to so many people. Your story and your posts are wonderful. It sucks that you have to go thru all this, but I’m so glad you keep in living. Always thinking of you, will always love you. 💘

  18. Pingback: International Ataxia Awareness Day • eSCAping Type 1

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