As anyone who lives with a chronic condition knows, a multitude of positive and negative effects come with it. One positive that I’ve discovered — as a necessary result of growing up with my condition — is that I am an avid planner. I take a small amount of pleasure from planning my schedule to the degree that I can each day. It allows me to feel somewhat in control of my life when the fact is that there is so much of my life that is out of my control. And my affinity for planning is one that seeps into virtually every aspect of my life.

In particular, I enjoy planning topics for my future columns. And when I looked at my calendar and saw that my article for July would be published on the Fourth of July, the premise for this article practically jumped off the page.

Because the Fourth of July is also commonly acknowledged as Independence Day, it seemed like the perfect opportunity to explore what the concept of independence means to me, as someone who is not independent in the traditional way, but someone who has had to go out of her way to latch onto intangible elements that might bring me a semblance of independence.

Now, I am aware that the idea of “independence” represented by this holiday is slightly different than the one that I’m going to be talking about. However, the premise of freedom is stagnant regardless of the context, and the fact remains that I have spent the majority of my life feeling beholden to something which I have no control over or actual say in.

I imagine it was the result of my subconscious embedding the forewarning in my head that I would never be fully physically independent, with nurses constantly hovering over me; but even at a very young age, I remember being intrigued at the concept of independence. I was drawn to characters like Harry Potter and Katniss Everdeen because they were completely self-sufficient, even at a very young age, and somehow more perceptive than all the adults around them.

And I desperately wanted to be like those characters because their lives were the complete opposite of mine — someone who requires assistance with practically everything from using the bathroom to applying mascara. I romanticized the idea of living alone and being able to take care of myself on my own. Because it has been subconsciously drilled into my head for as long as I can remember, that it is something I would never be able to do.

The degree to which I require help has increased over the years, as my muscle function has slowly deteriorated. I remember being very little, around the age where needing help with things stops becoming cool, and trying to do things for myself. I remember the joyous feeling of self-accomplishment when at 6 I was able to do the buttons myself on my pajama top for the first time. I didn’t know it in that moment, but it would also be the last time I would ever be able to do that.

Maybe if I had known, I would have savored that glimpse of independence a little more. Maybe I would have broken down and cried if I had any inkling of the degree of bodily loss I would experience over the next day.

But if I could go back and tell that little girl anything, I would never ruin that moment for her. I would swaddle her in the joy she felt in that moment, for everything it was worth. Because she wouldn’t get too many more moments like that in her lifetime. Years down the road, I would have to come to the realization that independence would not look as the majority of society depicts it — a person doing things for herself — but rather, learning to manage the caregivers among all the other pieces that would have to maintain my body for me.

Through the process of coming to this realization, I sought control in ways beneficial and harmful to my body. A positive one was diving wholeheartedly into my schoolwork and actual work, which still remains one of my favorite coping mechanisms, because it still is the singular aspect of my life in which I can get gratifying results for all of my hard work. On the negative side were all those years that I spent limiting my caloric intake with an iron fist.

Although my version of independence doesn’t look like most people’s, that doesn’t make it any less valid. I’ve come to learn that independence is not exclusive to being self-sufficient, but rather each person learning the tools to help them thrive in their own unique circumstances.

And that, my dear readers, is cause enough to celebrate today.

Joanna Buoniconti is a freelance writer and editor. She is currently pursuing her master’s at Emerson College.

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