For Erin Kelly, a writer with cerebral palsy, waiting isn’t an option. It’s a way of life.
“I have to go to the store today.”
“I have to stop at the bank after work today.”
My parents’ voices are muffled in the usual daily hustle as I watch a parade of silhouettes march by my bedroom door. The jingling of car keys orchestrate a symphony of sound that sets my heart on fire, followed by footsteps over the threshold and the cold burst of air that blows through my bones.
I slowly navigate my wheelchair back into my room and plug my headphones into my iPod, asking myself if there’s somewhere I have to be today—or if there’s ever been such a place. Not a single one come comes to mind.
I look up at the clock on my wall. Its hands have stopped moving. Someone must’ve forgot to change the batteries.
What good has a clock ever done for me, anyway? Its face laughs in mine, and its hands have yet to show me something I don’t have to wait for. I want nothing more than to break them—but if I’d break those hands, I know I’d break the hands of the teacher who taught me patience in the first place.
Frustration takes hold of my soul. There’s nothing I can do but taunt myself with the fascination of what it’s like to just jump in a car and drive. I look around at these cotton candy pink walls and laugh out loud.
What am I thinking? What god am I trying to fool? I don’t have the luxuries of the outside world—and even if I did, I’d still have to wait to fit myself into someone else’s schedule.
I blast my music in an attempt to nullify my feelings at this point. It works—until I change the song to “Life is a Highway” by Tom Cochrane.
I take a deep breath and remind myself that while everyone else has places in which they have to be, I’ve got deadlines to meet. As odd a metaphor as that is, I think it offers some justification for what keeps me sane.
The only way I can fight the war that my cerebral palsy brings is by having patience. It’s not my weapon of choice. It’s the one I’ve learned to have because I have to have it.
There’s no such thing as gaining the upper hand—no way to ever truly “beat” my disability at its own game. I just have to play along and hope I come out stronger and more mindful than I went in.
There’s still a part of me that wishes I could break those hands of that clock—but then I look at the world outside my bedroom door and can’t help but to smile. Its inhabitants are mostly family members whom I see on a daily basis. They may have difficulty understanding and connecting with the pain of having patience, but they help me weather the storm.
They try their best, and that’s all I can ask of them or anyone. I can’t ask them to feel what I feel, see what I see, or to even have the patience to fight this fight. Nor do I expect them to. By the same token, I respect and love them and everyone who watches me struggle for whatever reason yet has enough reserve not to step in right away because they know I can and will find my way.
Patience is the one thing that connects our worlds. I need it in order to communicate my frustration of being stationary and my family needs it in order to understand where I’m coming from. Those on the outside need to have patience as well, perhaps more than myself or the people around me.
Those outside my universe might be just like my family in the sense that they’re constantly on the move and may have to wait a few extra minutes to figure out what I’m telling them or to understand that I don’t get things done nearly as quickly as they do.
There’s a certain level of patience required when dealing with a disability, whether you’re the one who has it or the one on the outside looking in. You come to realize that the world moves a little slower and things can’t and often don’t happen at the speed they do when you’re looking out your window.
However, I think there’s certain kind of serenity in that. It’s a subtle reminder to slow down, soak in your surroundings, and take things as they come. Everything around you may become a mental test, but if you don’t have patience and discipline when you step inside that world (or any arena in which tests you) anger, self-pity, and resentment will eat away at your very soul.
It goes to show that sometimes having patience means waiting for something that we’re expecting. Other times it means stepping outside ourselves and being strong when we don’t want to be. Maybe those hands of the clock were right all along. Maybe Father Time slows his hands down in hopes that we do the same and soak in our surroundings a little more.
The road to serenity may be rough, but it’s in those moments of distress that we find out whether we’re made of sand or stone.
–Photo: meg’s my name/Flickr