Making a Choice to Live with Spinocerebeller Ataxia

Some people call me brave. Some have called me a bad-ass, courageous and even inspirational.

Some have called me too stubborn, too independent, too smart, too much of a lot of things “for my own good.”

I know no other way to be. Some days I’m angry; some days I feel like I can conquer the world.

I believe in honesty, integrity and no excuses. I work hard to live up to my own standards. Sometimes I fail, sometimes I am a champion. Mostly, I’m human.

The genetic cards were dealt to me, but it’s always been my choice in how I play them.

What is Spinocerebellar Ataxia?

Some science-y stuff, but I’ll try to keep it short and sweet as I understand it, hopefully expressed in a way that you can relate to it, or relate it to me or my story, or to someone you know. This is far from the only genetic condition inherited like this.

Your individual genetic code is passed down to you from your parents. You have an equal chance of inheriting genes from both, but you will inherit 50% from each parent, adding up to your 100% unique genetic code. It’s a game of chance as to the combination you get. Some genes will overpower others – this is called dominance. Some genes only become apparent when copies of a particular gene are received by both parents – this is recessive. There is also idiopathic, where the gene is expressed, but it’s origin is unknown. That’s the understood version of how it has come to be in me – my parent had it and it was determined to be idiopathic, but dominant, so now I have it and there is a 50% chance that it will be passed on to my offspring, but we know the origin, which also lends us a bit of predictability for the future in its expression, anticipation and symptoms.

I didn’t really experience symptoms until I was well into my twenties. It didn’t start affecting my life choices until I reached my thirties and has now impacted the way I live my life, but those choices are dictated by me.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was a precocious child as a youngster, but I learned to dumb it down. I was naive and shy and incapable and dependent. I was pathetic. Until I wasn’t.

A switch flipped – a light came on – clarity could not be denied, so I changed my life. I became what I wanted-I made decisions toward building the life I chose for me.

For a long time, I tried to live in other people’s comfort zones. I was never very good at it, but I tried. Then I began making my own life in my own way in my own uncomfortable-to-other-people zone, but a relief to me.

I learned how to do things differently as needed. Differently than taught, which also meant taking a different trajectory than the easy way that was constantly being tossed at me.

I decided first to try honesty and communication with the people in my life. When that was met continuously with resentment and resistance, I changed my location. As time went by, and my tolerance kept being ignored and truths denied, I changed my circle. My health, mentally and physically, was no longer willing to put up with this crap.

I grew up knowing that this could affect me, as long as I can remember. It’s stranger to think that it wouldn’t. My Dad was affected. I watched his physical affects progress throughout my life, but it was life changing when I finally acknowledged the impacts on my life choices. It was devastating, but also freeing at the same time. Up until then, I thought I had only two choices – to continue struggling and pretend this was not happening, or become wheelchair bound and become completely dependent on others. Turns out, there are a lot more options and in-betweens. Acknowledging the reality opened my eyes to possibilities. It gave me freedom of choice.

If you like this story, a share would be greatly appreciated! You can even now tip or pledge by clicking on the buttons below to offer a token of financial support! Either way, I'm honored to have you read. Thank you!