The Day My Best Friend Broke My Heart

It was a day like any other really. I was sleep deprived as usual, getting off of my overnight shift from the nursing home I work at. The difference was it was a day off and I planned to forgo sleep in order to accomplish some things. I had big goals for this day. Bigger than previous goals such as running errands and getting a caramel machiato to force myself to stay awake.

Anywho...

I was having a conversation with a friend of my best friend who was attempting to help her (my best friend) dabble in the modeling world. I voiced my concerns about how this could be done without jeopardizing anything in her life. I wanted so badly to see her succeed in the modeling world because she's absolutely stunning and I could see her going far.

We talked for what felt like hours about how we could make this possible for her. We plotted and schemed thinking we had it all figured out. I thought about it all night at work, thinking about how she would respond to our plans for her. It was fool proof..or so I thought.

The moment of truth came that morning when she messaged me on Facebook. I was ecstatic. I started a conversation with the three of us and we began to lay our plan out to her. Her response wasn't in the least what I expected, she first sent me a text that stopped my thought train in the middle of its track.

That was the moment my best friend broke my heart, in the most beautiful of ways...

You see, my best friend Arianne lives with a condition known as Spinocerebellar Ataxia or SCA type 14. What is that? Well, according to ataxia.org it's "an inherited defect in a gene that causes slow degeneration of cells in the cerebellum resulting in ataxia and incoordination." Another words, it causes someone to shake, loose coordination of their limbs, and require the assistance of a cane, walker, or wheelchair. To read more, I strongly encourage you to visit Ataxia.org. 

I wanted Ari to not feel like a prisoner in her own body and I thought that by modeling it would help her feel as though she could accomplish something that not many people could say they were doing. But Ari receives medical benefits that would be completely taken away if she ever had a job of any sort, and that's the last thing I or anyone else who cares about her wanted to see happen. 

Let's take a step back for a moment, shall we? 

Ari's Mom, Jo has been not only a mother but a caregiver and best friend to Ari. Momma Jo is an amazing woman and as a mother I cannot imagine what she's gone through because not only does Ari have Ataxia, but so does her older brother. Having two children with a disability has to be difficult in so many ways and I commend her for having one of the most resilient, self-less souls of anyone I know. Momma Jo had concerns for Ari too and on the night while I was in the Mid-West plotting Ari's future, Momma Jo was on the East Coast trying to convince Ari that modeling wasn't the best idea. 

Now, fast forward to the moment we began laying our plans out before Ari. She stopped us and told us it wasn't happening. The selfish side of me was hurt, how could she not like our idea!? How could she not even give us a chance to explain all the details? Why was she running from this? It was a great plan! Sure it needed some sorting out, but what plan didn't? Little did I know Ari had much bigger plans. 

As she explained her thoughts and goals she had for herself I realized that finally Ari was speaking for herself, planning things for herself, making goals for herself. She wasn't going to allow anyone to do these things for her. In that moment I watched as Ari finally embraced her disability and began owning it. It was something she hadn't done before. Something she shied away from. And that is the moment my heart broke. She was finally willing to conquer her own demon. It broke from happiness because she accepted herself. 

We went on a Vegas trip a year ago, our first time ever meeting in person actually. A long story there that I'll write about in another blog some other time. While in Vegas I realized just how self-conscious Ari was of her wheelchair. She could walk assisted but she was unsteady on her feet so any long distance walking required her to be in a chair. We would take pictures together and she'd wanted the chair to be elsewhere. I told her to own it like an accessory, it was part of her and everyone who loved her knew what it was. Slowly she seemed to warm up to the idea and selfies became a regular on our trip. 

Over the last year, I've witnessed her blossom into a much more confident woman and I'm so proud of her for doing so. But the other day was my most proud moment because she began to look at her future. She wants more out of life and I'll do everything to help her achieve her goals. We've talked bigger ideas now. Modeling is small time, no we're talking about raising awareness for Ataxia. There's an entire community out there that deserves to be recognized. 

I felt like the worst friend ever the other day because when I asked her what her actual diagnosis was she told me and that's when I truly began learning about Ataxia. Prior to that I thought "Oh, it's a form of MS or MD." I really had no idea other than what she had told me what it was. I felt guilty for not taking the time to know that side of my best friend. Perhaps it was because I didn't want to face facts? I've never looked at her differently because of it. To me she's Arianne, that funny, sarcastic girl that has an obsession with Britney Spears that matches my own. (We saw her in Vegas, by the way.) She's Ari, the girl who loves frogs, concerts, and Dancing with the Stars. She's my best friend and she's got this thing that doesn't seem to slow her down. 

Especially not her mouth! She's witty, confident, and beautiful. And now, she's ready to own her disease and start a revolution of sorts. I can't wait to go along for this ride with her...

So there's that. Keep an eye on my blog because there's more of this journey to come. Today I met some other individuals living with Ataxia through some Facebook groups and I'm inspired by their resilience. I had no idea this world existed and I'm honored to be welcomed into it with open arms.

Who is ready to start a revolution?

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