How I Continue to 'Seize the Day' in My New Life With Illness


It seems impossible to pair concision with debility, yet no words truly capture change. At the age of 19, after my sophomore year of college, an anomalous reaction to a medication felled me from college and left me contemplating the tensions of articulation.

Before my condition began, I was a life-long dancer and an avid power-lifter; a straight A student and a teacher in training. I completed a marathon and a half at Avon 39: The Walk to End Breast Cancer a mere twelve months prior.

girl walking down a path with her hands raised in peace signs

Now, the unspeakable mounts. When I’m at my worst, I cannot stand or shower. Severe heat intolerance renders me unable to go outside in the summer. At times, lights flash across my eyes; hormonal fluctuations bring supposed seizure activity. The brain is a kingdom of secrecy; how greedy I was not to pay homage to the grandiosity of its orchestration – the functions of synapse and neuron – before its synchronicity fell out of tune.

Those who face disability know how swiftly others normalize difference. To many, my limitations have become commonplace, a mere “given,” another facet of my persona. To me, however, this body is a perpetual stranger. I wake up, and in the few moments between dreams and morning, my mind reverts its old self; my muscles crave the strain of exertion, the chance to hike amidst rays of sunshine and mists of vernal dew. Suspended between wakefulness and instinct, they do not remember their limits. When sea creatures are caught in the trappings of apathy, corsets of plastic caught around their bodies, they still remember what it means to swim. So, too, do I remember how it feels to run, jump and dance.

 

When others hear of my condition, those for whom it is not yet normal, they often ask what they can do to help. To that, I have two answers.

First: Listen. Not to me, per se, but to the world around you. We all have unspeakables. So does the mountain. So does the river. We must listen for the hints intoned in exhalations, etched across rock-face, rushing downstream. Listen with an unbridled sense of astonishment at the mere fact of life, without fear of reply or the onus of reparation heavy on our shoulders, a barrier to empathy. We must learn to make peace with silence to embrace its potentiality, for there are some things in this world that cannot be fixed; they need only to exist and be acknowledged.

To listen for understanding is a rare and profound gift. Dichotomous are the acts of trying to understand and making assumptions of understanding; how rare the former is, yet how crucial. We must listen in order to love and live harder, with intention and attention to all that surrounds.

My second answer is subjective, but encapsulated in the word “run.” Run as hard, and as fast, and as far as you can. Go until your lungs burn so that you may relish in the sheer power of your movement. Listen to the grip of sneaker upon stone.

And by this I do not mean the literal act of running, but rather the engagement in what makes you feel most alive. What is it you crave? What does your subconscious yearn for in the moments before wakefulness?

I ask my friends to run for me, but what I really mean is Carpe Diem. That was my father’s motto as he faced a serious illness, and it was not until I experienced my own physical suffering that I understood the truth in the banality. If my own deterioration can encourage others to seize and revere their own present abilities, not only through contemplation, but through concrete and mindful action, then my own suffering is eased. We are transient beings. We must seek, question and take healthful risks while we can, before the concept of temporality becomes actuality – as it has, in many ways, for me.

But how, now, do I run?

With pen and paper.

I may not ever travel, exercise, teach, give birth. The blueprint I created for my life is lost beneath a spillage of White-Out, but my pens remain, and the mind behind them. With those tools, I may set to work on new sketches with a humbling and omnipresent awareness of unpredictability – at once saddened but empowered.

To quote the poet Raymond Carver, I love my life “even so.”

When I am bedridden and confined to one room? Even so.

When my unspeakables manifest and test the limits of patience? Even so.

Pay attention to your innermost energy, and please do not conflate “now” with “forever,” whether the present is positive or negative in your eyes, for suffering, too, is temporary. In the moments when my body oscillates towards improvement, what appear limitations to others seem exquisite privileges to me: the ability to drive to a grocery store rife with color and bounty, to meet with a friend or laugh without care… Life, in such snapshots, is ever the educator reminding me of one resonant truth: beauty endures.

Though I will forever mourn what could have been, I am aware of all that remains. I will listen with fierce determination and openness.

I will find my own ways to run.

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