There’s a storm coming. I can feel it deep in my bones.
It isn’t gentle like a summer’s breeze or subtle like a faint smile. No. This storm—my storm, comes like a thief in the night who tries to steal the crown jewel of my soul: my inner peace.
The sun isn’t shining through my window blinds yet, so I roll over in my bed and wipe the sleep from eyes. I look over to my left and see the most enduring figure in my life, my wheelchair, parked a few feet away. It’s a constant, sharp reminder of cerebral palsy—one of the most common disabilities known to man that can affect everything from brain function to fine motor skills needed for tying a pair of shoelaces or brushing one’s teeth.
I pull my bedsheet up far enough to cover my legs, while grudgingly asking myself why I’m so patient and why it’s such a virtue before switching my gaze over to my right. My shrine to one of my biggest heroes, Dwayne ‘The Rock’ Johnson, brings an automatic smile to my face because it’s a measure of happiness—and in some ways, redemption for the many times I’ve fought a quiet war against myself and won.
I wait for a parade of early morning footsteps to pass over the threshold of the wheelchair-accessible entrance before I enter my always busy household. One long, slow breath while I remind myself that nothing is a “simple” case of mind over matter when it comes to doing basic, everyday things.
I look around at my cotton candy pink walls and laugh out loud because I don’t like to allow myself to become consumed by my circumstances, or the situations they simultaneously put me in. Situations where I have to wait even more than I already do. Outside my door, I hear my family rattle off their itinerary for the day:
- “I have to go to the store.”
- “I have to stop at the bank after work.”
Then the storm hits.
That’s the moment when the ever-present storm inside me begins to rage, and I’m forced to put the very attribute I wish I didn’t have into use. It takes all I have to lay there and listen when all I want to do is get up and move with the same flow as the rest of my family. But. I. Can’t. The flow and coordination aren’t there—because it isn’t mine, and I don’t pretend it is mine.
There’s a certain degree of inner peace in knowing I have my own flow as a habitual thinker and most importantly, as a writer—the same way a painter or a sculptor has theirs. It doesn’t change the fact I’m disabled, or the amount of patience required for me to live my life the way I want to live it. I think I embrace my flow to its fullest because I had to search long and hard to find it. It wasn’t given to me in a neatly wrapped package, but now that I’ve found it, I’ve made a promise to myself to always protect it.
For me, having patience isn’t a choice, nor is it something I’ve particularly wanted to master.
In truth, having patience is a lesson I would have much rather learned in my own time or by my own hand, but the cards weren’t dealt to me in that manner.
I find myself waiting for everything. I wait to get dressed all the way through to wait to get into a car. Getting in a car means surrendering to someone else whatever freedom I have and giving in to doing things their way, on their time. I can’t even begin to describe how much my patience has been tested in that regard, so I won’t try to make up some riveting story about it.
I find it ironic that my cerebral palsy strangely encompasses the vastness of Webster’s Dictionary, which defines patience as “the capacity, habit or fact of being patient.” To simply take that at face value would be the easy thing to do—as well as the expected thing to do because we all have to wait for something at some point in our lives. Some might argue you only need to have patience in certain situations in life, while others can be somewhat rushed.
In fact, “the capacity, habit or fact of being patient” seems like a very broad definition for a word that can carry so much weight and emotion—and yet, patience itself is so much more than just a word, particularly in today’s world. Patience a practice some can get “good” at or even master. If patience is defined by such simple principles, I think it’s only fair that every human being has the right to apply them to their lives however they see fit—or at least try to.
It doesn’t mean it’s right or wrong.
It’s about finding ways to live on one’s own terms, regardless of how difficult the journey may be.
I find living with cerebral palsy—while also having an abundance of forced patience—is a habit as well as a cold, hard fact, just like Webster’s Dictionary says. I struggle to find the capacity to grasp this notion: I can’t get myself out of bed in the morning, but I can write a 1600-word story or article without thinking twice. That’s just a small piece of the puzzle when I stop and think about all the things I have to wait for on a daily basis. Somehow, it still only scratches the surface.
All I know is there’s a very delicate balance to all of this—a balance I’m immensely grateful to have found for the sake of my sanity. It’s something I had to find on my own, or I never would have known what it truly means to always be honest with myself about needing help… and having to wait to get it. I’ve learned to accept the fact that while I may like having patience, my disability demands it.
There are no two ways about it. It’s not the way I choose to be. It’s the way I have to be.
At the end of the day, I have to remind that I didn’t ask for any of this. I didn’t cause this storm. I just happen to be in the middle of it every day. This is my life, and I still wake up and face the day with fire in my heart and a smile on my face!
Photo Credit: Pixabay