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Living My Best Life Anyway

I Refuse to be a "Sufferer"

By KJ AartilaPublished 4 years ago Updated 4 years ago 3 min read
Living My Best Life Anyway
Photo by Daniel Mirlea on Unsplash

I was born with the gene for Spinocerebellar Ataxia, passed down from my dad, although the origin before that is unknown. A genetic anomaly, I guess. I also have two brothers. One is affected, one is not.

I was born “normal,” doing all kinds of “normal” physical kid things from running track, to horseback riding, to dancing, skating, bike riding, etc. It wasn’t until I was well into my twenties and off to college, that I started to personally notice things, such as a loss of balance here or there, or that doing some physical tasks weren’t as simple as they used to be, but I continued on basically unaffected in my life choices until I hit my thirties, when symptoms became obvious to others and undeniable to myself. Still, I was able to proceed with my life as I chose. I decided to get married again, have a child and officially start my horse business.

As I progressed into my forties, I noticed serious impairments in trying to complete common day-to-day functions. I decided my lifestyle required distinct changes. I gave up my driver’s license – a very difficult choice for this road warrior – and received the confirmation of “disabled” from my neurologist. I started to spiral down into a feeling of codependence and worthlessness. I was frustrated and not liking myself very much, even though I kept a smile on my face.

I decided I needed to change my perspective and stop being so self-absorbed. People and animals were depending on me, and the truth was I still had a lot I wanted to do. Giving up was not a good option. So, I got up.

Not to say I don’t still get frustrated, but so what? Everyone does – I’m human. To counter that, I’m learning to really appreciate small victories, regardless of outside opinion. Instead of focusing on what this SCA keeps taking away, I keep working to hone in on what it keeps giving me in return. I can’t seem to think of it as a “gift” so to speak, but it is a big piece of what makes me who I am. And who I am is a person that wants to be a positive force, not a negative presence.

Spinocerebellar Ataxia continues to teach me patience and determination. I am learning to be patient with myself, as well as to practice patience with others, especially for those who really want to help. I am determined to keep finding ways to continue practicing my passions. I have also determined that I am worthy of existence, love, motherhood and a good life. I have a great deal to offer relationships and the world despite – or maybe even because of – this disability.

I still work with my horses. Both riding and training. I’m just learning to do it differently. I can’t imagine a life not filled with horses. I did get depressed and disheartened about it for a while, thinking I would have to give it up because horses were just too dangerous, and I wouldn’t be able to work with them effectively or skillfully anymore.

That’s just not true! I most certainly can no longer rely on using many of the techniques I grew up learning, but in many ways, learning new ways to accomplish what I want has made me a much better horseman.

I’ve always been a stubbornly independent person, much to the chagrin of my parents and close family, who often were concerned with the possibility that I might hurt myself. Well, I have hurt myself, but I keep recovering and continuing. I think this attitude of determination has served me well over time. Without it, I would have probably given up doing pretty much everything I love from working with horses to creating art to discovering I like to cook. I may not take the conventional road to achieving most things, but I rarely have.

I am a happily married wife and Mother. I am a horse trainer, author and entrepreneur. I carry a lot of labels, but I refuse “sufferer.”

I have also started a YouTube channel for people who are differently-abled who would like to continue to work with horses or find ways to pursue any passion they desire! We aren’t limited by physicalities, only by ways of thinking. When we are open to new possibilities, we reveal new possibilities and uncover opportunities.

You know what? This is not my last rodeo…

Here’s the link to my Youtube channel: https://www.youtube.com/channel/UCMWeXlnWnGd0-iFPi9EvtFA

Thanks for reading and sharing!

humanity

About the Creator

KJ Aartila

A writer of words in northern WI with a small family and a large menagerie.

My Substack

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Comments (4)

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  • Antoinette L Brey3 years ago

    amazing inner strength. thanks for sharing. Sometimes I need a push not to become a sufferer

  • Kimberly Aird3 years ago

    I loved this. So many helpful insights to ponder. I also did not know a person could have too many pets. 🤔 😂

  • Ahhh, celebrating small victories. That really helps a lot, more than I thoughts it actual could. I'm so happy you didn't drown in depression. It's not easy to do that and I'm so proud of how far you've come. Thank you for sharing this inspirational piece!

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  • Cathy holmes3 years ago

    Great story. I love this line "I carry a lot of labels, but I refuse “sufferer.” Well done.

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