Unbroken Spirit in a Broken Body
Barely conscious, lying motionless, sounds of hurried conversation and hospital machines loudly blare as my heart rate skyrockets beyond 160, my blood pressure falls past 70/30, and my fever spikes to 105. In the ICU, fluids are vigorously pumped into my thin veins as my eyes begin to swell shut, and a blood transfusion begins. Once again, doctors surround my painfully frail and ailing body as I try to comprehend yet another harrowing situation, in which I pray to God that I will evade death once more, for I am only 24. Writhing in agony, I mentally recall moments from the past 9 years in which I’ve endured the treacherous daily battles from severe cases of full body RSD/CRPS, POTS/Dysautonomia and Gastroparesis/DTP, among other illnesses, all of which cause countless unmanageable symptoms and relentless excruciating pain every moment of my life.
Sweet 16 was a dream that never was, for the raging fire, RSD, set me ablaze, maliciously burning from the inside out, continuing to scorch my disease-ravaged body until this day. After waking up from a necessary surgery that was supposed to eradicate my pain, 9 years ago, the RSD immediately inhabited my body like a parasite with I as its host. It only took 3 months to get diagnosed, but it was already too late. Pandora’s box was opened. Normalcy never returned, but brought forth a desire to fight and overcome all adversity. The fire will never consume me, but it consumed the life I once had.
Light stings my eyes. The slightest sounds are deafening. Water feels like acid on my peeling skin. The tenderest embrace causes shock waves of radiating pain. Collapsing to the floor, clutching my heart as I gasp for air, and seeing my world turn to black are not unheard of situations. Limbs spasm, change color and lock, in addition to jaw dislocations. Migraines never end, dizziness remains and everyday stimuli assault my senses. Already unwillingly confined to a wheelchair, now bed.
Tortured by incessant nausea and vomiting, my body becomes unrecognizable. Cracking nails and fistfuls of hair fill my bony hands as my languid body withers away, taking on the appearance of a young school girl. Numerous GJ feeding tubes are placed due to dislodging and infections. Rushed to the hospital, on the brink of death, a painstaking fight ensues yet by the Grace of God, pure love from family and friends, and the nourishment of TPN, my life is saved. Though life is fragile, it is still beautiful.
An abundance of medical packages arrive each week, lining shelves, spilling out of drawers, and filling both fridges. Months of trying hospitals stays occur due to complications and a ghastly amount of serious sepsis infections. Wires, lines and tubes, tangled like a spiderweb with me in the center, trapped with no way out. PICCs and ports are ripped out and replaced nearly every month.
I’ve seen approximately 100 medical professionals, withstood numerous painful treatments, procedures and therapies, and tried nearly 50 medications. Perplexed are the prominent doctors who genuinely care and strive to ease my suffering. Despite my indefatigable efforts, all treatments have failed to bring pain relief or stop the progression of my debilitating illnesses.
When illness infiltrates, no aspect of life is left untouched. Days as a dancer, runner and musician faded, though the passion did not. Forever a runner at heart, I now race for my life in this interminable marathon. Bullies fiercely attacked me verbally and physically throughout high school and college, but I persevered by earning a 4.0, volunteering, and serving on education boards. Stranded on the cold ground, my rigid body motionless, needing to be carried across campus, and sleeping 10 hours a week became routine. Regrettably, several medical leaves ended my pursuit of majors in Special Education and Spanish, but my dreams live on.
Amidst these death-defying perils, God’s blessings illuminate my life. Family and friends who have listened intently with understanding, sincerely attempted to soothe, approached with patience, and enveloped me with compassion, bring me strength. Those who have embraced me and all aspects of my life remained steadfast as we have sat in saddening silence, and given the gift of laughter, leaving me happily breathless, light up my life. Those who remember my past and envision my future, continuously encouraging the pursuit of my wildest hopes and dreams, erase the darkness. Though my body is weak, my mind is strong and my spirit unbroken. I remain forever grateful. Multitudinous battles are ahead, but I will remain fortuitous in my fight, persisting onward with unyielding determination. I may stumble, and I may fall, but it is with grit and vigor that I’ll rise again, for I fight like a girl. I am a survivor.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.