The brain has this fascinating mechanism, presumably adaptive, which makes it such that we are mostly unable to re-live physical pain the way we do emotional pain. This neurological phenomenon has been my saving grace over the past seven years. If I was able to channel historical sensations of physiological pain, as readily as I can remember psychological turmoil, my ability to evade suffering would be substantially reduced. Terrifyingly, but conceivably, my resiliency could be diminished to negligible, as the bursts of reprieve from physical discomfort are essential to sustaining my hope in a return to bodily peace one day, a hope that confers the value of my efforts even when their benefits are unperceivable. The number of possible, accessible physical distractions pales in comparison to the vast, seemingly infinite, mental tools I use to engage my mind in contemplation, create alternative realities in which to rest, and adventure to “other worlds” for refuge.

 

I mention this because whenever I claim that an episode was the worst pain I’ve ever experienced, I realize that it is not necessarily an accurate or well-informed conclusion. I may “think” it, but I can’t “feel” it to provide any sort of tangible confirmation or judgment free of hindsight bias. However, without the capacity for precise comparison, to the best of my highly fallible memory, I firmly believe the abuse inflicted on my physical being during this recently past Holy Week was the cruelest physical torment I have ever endured. Less than an hour after returning home from a routine iron infusion last Tuesday, given regularly as a remedy to my recurrent anemia, I was being rushed to the emergency room of the same hospital, feverish and writhing in pain in the back of an ambulance. The synergistic effect of my preexisting conditions with an acute infection that developed in the port/central line connected to my heart resulted in a bout of encephalomyelitis (swelling of the brain and spine) that dumped me into absolute and unrivaled desperation. With the removal of the port and administration of IV antibiotics, the catastrophe was quickly resolved. However, being “out of the woods” physically didn’t save me from the daunting psychological task of picking up all my broken pieces and gluing myself back together in a state of unprecedented fragility and under the ominous pressure induced by the supreme fear of experiencing that level of pain ever again.

 

As a neuroscience major I have thoroughly enjoyed growing in my understanding of how human memory works, but the vast majority of the details implicated in this capacity are still unknown to us. The mysteriousness of memory was made all the more apparent and intriguing a few days ago, as mine returned me to this poem, which so aptly reflects both my sorrowful sentiments and my longing for hope.

About Normal

(from Hope through Heartsongs)

by: Mattie J.T. Stepanek

 

Right Now

I don’t know what normal is

anymore.

That’s because Normal has been changing

so much,

so often,

Lately.

For a long while of lately.

I’d Like normal to be

Okayness.

Good health…..

Emotional health,

Medical health,

Spiritual health.

I’d like normal to be

Like that.

I’d Like normal to stay

like that.

For now though,

I know that normal won’t be normal

For a little while…..

But somehow,

Sometime,

Even if things are not normal,

They’ll be okay.

That’s because I believe

In the great scheme of things,

And life…..

 

– May 2001

 

The poem above was given to me in a frame by one of my mom’s oldest and dearest friends, my Aunt Libby (“Bibber”). “About Normal” was written by a boy so gifted and inspirational that his essence was nothing less than saintly. His spirit was ostensibly divine, his wisdom evoked supernatural, and his offerings to the world were worthy of unending praise. The adorable fellow responsible for serving as a beacon of hope and prophet of peace for this world began writing at the ripe-old age of three years old. As I encounter and reencounter his majestic compositions I enjoy playfully considering him a spiritual friend and allow him to work through his poetry to guide my heart. Mattie J.T. Stepanek was a well-respected poet and peace activist who departed from this earth far too soon. At thirteen, Mattie died from complications due to Dysautonomic Mitochondrial Myopathy, a rare form of muscular dystrophy. On a website commemorating Mattie, it reads: “he lived a life that was brief in length but powerfully blessed with depth.”

 

 

I was first “introduced” to Mattie in 2010 at the onset of what has become six years of chronic and progressive illness. During the fall, upon returning from South Africa with mononucleosis (referred to overseas as “glandular fever”), my body’s inability to recover not only had me “sidelined,” unable to compete in my passion, field hockey, and “benched,” incapable of attending school or keeping up with the coursework, but also bedridden, barely able to crawl out from under the covers to use the bathroom. My mom recalls this gloomy era for our family as the months that Francie was too sick and weak to lift her arms above her head long enough to wash her hair in the shower. The physical toll was difficult to stomach, but the psychological isolation and loss were unimaginable. Even now, six years older, wiser, and removed, reflection on those gut-wrenching encounters with utter despair, loneliness, and hopelessness conjures a storm of sadness with more than enough strength to suck the life out of me. Although I admit to the futility and perilousness of leading a life driven by fear, the trauma of that experience ingrained in me an enduring, usually irrepressible, instinct to avoid regression to that state, no matter the costs. My resolution to never again tolerate days lacking meaningful connection to others and devoid of a sense of purpose persists and weaves through the tapestry of my identity, forever increasing in complexity. One manifestation of this resolve to save myself, and eventually others, is observed through my unceasing efforts to better understand the pathology and etiology of my condition. I am not proud to admit how many medical, social, academic, and religious decisions I have since made that have largely been motivated by an overwhelming fear of returning to that helplessness. However, the intensity of that dread has served as a powerful propeller, thrusting me forward and further away from that dark place. The downside of living with that oft all-consuming anxiety is the hindrance of my ability to move on psychologically and let go of negative emotions that haunt me.
It is bittersweet and intensely emotional to think back to my 16-year-old self and remember the sense of loss, an injury so great that it drove me toward contemplation of suicide. Knowing all I know now about the years ahead, I cringe for the trials and tears of her future. I lament the pools of blood, sweat, and tears that welled up in ditches of desolation. I regret the time spent in solitary confinement, without the communication skills crucial to invite others into her circle of suffering through an enhancement of their understanding and a development of their empathy. I pity the prison of pride that prevented her from being vulnerable and authentic to her true self. I have such sympathy for the immaturity that stunted her post-traumatic processing. I cry for the doubt that will creep into her mind and relentlessly strive to strip her of her faith: in God, in the goodness of this world, in her worth, and in her future. I grieve for the forced forfeiture of the earlier life for which she continues to pine and the lost potential in the future life she had envisioned.

 

Yet, simultaneously, I cannot help but beam with pride for the resilience my younger self-exhibited in patiently picking herself back up again and again. It was something she could not have done without the tremendous support of family and friends, a safety net of people and community of cheerleaders whose effects, individually and collectively, were made all the more powerful as she cultivated a deeper appreciation for their care and learned to accept it with more profound humility. Through blossoming more fully and sharing her story more freely, she was rewarded with constructive insights into the value of her suffering, a gift that is rare to discover in a sea of pain and uncertainty.

 

So, for as much as I wish I could protect her, I know doing so would be to inflict a greater disservice. It would rob her of the means and motivation to build buffers and lifesavers that sustain her through life’s inevitable storms. Shielding her from hurt would deceptively cause more harm than good, depriving her of the opportunity to become a better version of herself. It would steal her chance to mature in confidence that she, like her hero Mattie, can redeem her suffering and use it make a positive impact on this world, no matter how small. It would be wrong to wish her pain away because doing so runs the risk of neglecting her development. It could prevent her from establishing a sense of purpose, belongingness, and appreciation for life that might aid her one day in achieving her grandest goal of forgiving her flaws, insecurities, mistakes, and shortcomings so that she may die in the peace of knowing she was enough and that her inherent worth was derived from an all-good Creator and without need for qualification, ultimately and ideally helping others to do the same.

 

Before I realized this ambition, in the beginning of my rebirth into a life characterized by an incurable disease, I was stung as I witnessed everything around me went on as it had before I fell ill. Without a diagnosis to justify my rapid descent from a tri-varsity athlete to just shy of wheelchair bound, my sanity was called into question. Confounded doctors became defensive and channeled insecurity in admitting they didn’t hold all the answers into accusations. These character slights that affected me deeply then and in moments of weakness disturb me still today. I was compelled to doubt myself so genuinely and judge myself so harshly that it broke me and disabled me from reliably defending or describing my situation to anyone else for a long time. The muzzling effect of this vicious cycle of disbelief in myself has had a lasting influence that requires continual attention and care. Naturally, the incredulity of friends tarnished nearly every contemporary relationship I had at the time and only worsened my suspicion in myself. Having abandoned all hope in recovering those friendships, as I was stuck in bed without an explanation for my symptoms or any sort of timeline to predict how long I would remain so useless, I had very few realistic hopes and my dreams for a productive future free of pain whittled down to nothing.

 

Trying to convince myself there was something on the other side of suffering for which it was worth the effort to survive seemed to demand a superhuman strength. However, that was a dangerous illusion, a treacherous trick of the untrained, inexperienced, and immature mind. It would take years to manufacture and practice the coping mechanisms I now employ to navigate these seemingly helpless situations. The sharpening of those finely tuned instruments took meticulousness and patience, from myself and those around me, that I don’t know if I would have been able to set my mind to developing if I had known in advance the compulsory tax – a mammoth consumption of precious energy and time. That being said, I now see and confess—for all the effort I have devoted to managing expectations, dealing with emotions, and clinging to hope—the recompense has been miraculous. When I feel a peace-of-mind, in moments of clarity, it is impossible to query the value of my investment in good conscience. The priceless return was a security and insurance of my desire to live that withstood tests formidable enough to earn a primetime spot in my reel of worst nightmares.

 

A retrospective analysis reveals the welding of those tools began on those days in bed during which I was dependent upon family members, most often my mom, to bring me food and drink, as the ability to venture downstairs to the kitchen seemed improbable and imagining what it would take to come back upstairs looked outright impossible. The accruement of practical coping tactics started with attempts to distract myself, numbing the pain with mindless television. Next, a woman who rose to fame out of an impoverished childhood and used her platform and popularity to touch the lives of a fan base that at one point reached 13.1 million U.S. viewers daily came to my rescue. With poignancy and positivity, Oprah Winfrey captivated my attention like a light at the end of the tunnel. Her afternoon show, targeting middle-aged stay-at-home moms managed, powerfully, to shake me from my depressive slumber just enough to shift my focus toward a brighter direction. The same year I started watching Oprah for the first time, the Wall Street Journal coined a term used to describe the magical effect her talk-show had on her worldwide audience, a skillful performance in front of the camera summing her $2.9 billion net worth. Using their linguistic intention, I was “Oprahfied.” Phil Donahue described it like this: “Winfrey saw television’s power to blend public and private; while it links strangers and conveys information over public airwaves, TV is most often viewed in the privacy of our homes. Like a family member, it sits down to meals with us and talks to us in the lonely afternoons. Grasping this paradox, … She makes people care because she cares. That is Winfrey’s genius, and will be her legacy, as the changes she has wrought in the talk show continue to permeate our culture and shape our lives.”

 

The vastness of her legacy is hard to comprehend, and the positive effects she has had on the world are incalculable. Yet, I am a living testament to the gift she had for transformative and permanent change in the lives of those she reached. Due to the size of her following and the number of women with stories like mine, I doubt I will ever have the chance to make her aware of the fact she had this affect on me. Nevertheless, I will continue to suspend my hope on that farfetched possibility because to do so would not only be an immense privilege, but also would be the only way to properly honor the heroine who taught me: “Create the highest, grandest vision possible for your life, because you become what you believe.” I rapidly transformed from an afternoon television virgin to a fanatical Winfrey fan. I watched the hour long program religiously and with an intense commitment to getting the most I could out of the lessons proffered by Oprah and every guest she invited to be interviewed on national television. This may sound silly, but this is where I planted seeds and harvested an insatiable proclivity for hunting for exemplars and scouring my environment every day for glimpses of hope that could replenish by sapped stores of optimism, wisdom, and hope. It also escalated my aptitude for gratitude, another Oprah-endorsed practice that, often subconsciously, ushers in more, and fortifies preexisting, hope. These are a few positive reinforcement strategies that help me survive on my worst days and thrive on my best.

 

Oprah’s show merely entertained me some days, but occasionally a particularly inspirational guest emerged on stage and his or her message would reach through the speaker of my television to provide a palpable token of hope that I learned to treasure like the finest, most precious gemstone. Finally, one afternoon in 2010 my heroine introduced me to my little hero. I watched in wonderment as Oprah shared her young friend, Mattie Stepanek, with the world, showcasing the brilliance of the light and love that emanated from his being. His interview was the one from which I derived the greatest joy and from which I began to form faith in my ability to conquer and silence the inner demons that constantly hummed melancholy tunes and seductively whispered terrorizing anxieties.

 

On the program that day, Mattie, explained that his poems, referred to as “Heartsongs,” are “gifts that reflect each person’s unique reason for being.” Mattie’s story and his messages of peace continue to be translated and disseminated around the world through the valiant efforts of his courageous mother, in spite of her own struggle with disabling muscular dystrophy. His Heartsongs have at times helped me realize my unique reason for being, at others served as a reminder of every being’s inherent worth, and nearly always enthuse me to pursue a purpose that creates even an ounce of the goodness Mattie brought to this world and into my life. Perhaps today, or maybe the next time you find yourself with an insufficient supply of hope, I encourage you to take the time to meet my friend Mattie: http://www.mattieonline.com/.