This week the “Invisi-Lilies”, a group of female students affected by invisible illnesses, introduced themselves to the Notre Dame community. On Thursday, March 30th we will be celebrating ND Invisible Illness Awareness Day and using this opportunity to educate our Notre Dame family about our chronic medical conditions that are not perceivable to the naked or untrained eye. It is important to us that this campus understands our illnesses are “Invisible, not Imaginary.” We are thankful for anyone taking a moment out of his or her busy day to see more of us than meets the eye.
There is another group on campus I would like to introduce today. These are the individuals who have gone to great lengths to learn about the shades and shadows of our lives that aren’t immediately apparent. I would like to shine a light on the often unnoticed, but never unappreciated, efforts of just a few of these compassionate people (and a puppy). For every Invisi-Lily that walks across the stage and earns a ND diploma, as I hope to do this May, there is an army of Invisible heroes that make that possible.
There are my frieNDs:
The Illinois native that, by best estimate, in record-breaking time went from randomly assigned freshman roommate to soul-mate. We had so much in common (she is a fellow Invisi-Lily) that our connection was inevitable, but what is more special is the enduring friendship, which superseded that initial recognition of our kindred spirits.
Arguably the most impressive girl on this campus, who just so happened to be in my dorm and in too many of my first-year classes to count. She dragged me through studying for multiple rounds of exams to pass my classes as my health flailed out of control, all the while cheering me on with indefatigable positivity. Her tireless efforts to make this world a better place continually provided me with hope in the goodness of humanity and for the future.
The Jersey chick who never let me lose touch through my semester and a half long leave of absence, during which I traveled half way around the globe for two months for treatment at a European medical clinic. She made coming back to our “home under the Dome” a lot less daunting and living alone off campus exponentially less lonely. Her eagerness to help make my daily life easier and my college life more enjoyable saved me from being perpetually overwhelmed and isolated.
The boy who, so unexpectedly, transformed from friendly acquaintance to closest companion and beloved confidant. He became the partner I never knew I wanted or needed. He took care of me in ways I will never be able to repay. No expression of gratitude seems sufficient for the joy he has brought into my life and the selflessness with which he has approached our relationship.
There is the ND faculty and staff:
Professor after professor who noticed my persistence and treated my rare circumstances with justice and prudence. He graded me based on the same criterion as every other student, but kindly recognized the extraordinary effort put forth in spite of my health troubles. She saw all that I was up against and because of it appreciated my work all the more. Their encouragement willed me to continue my college career. Their validation prevented me from giving up on a degree or forfeiting post-graduate opportunities. Their devotion to a single struggling student inspired me to keep dreaming.
The Sara Bea office of Disability Services that worked tirelessly to coordinate necessary accommodations without ever failing to be as warm and hospitable as imaginable.
My academic advisor who patiently patched together a transcript—complete with medical absences, temporary withdrawals from the university, and transfer credits—the complexity of which rivals an “archeological dig.” She never complained when a semester was, yet again, interrupted by a health crisis that required me to rush home for treatment in the hospital of indefinite durations. Her poise and composure were the calming reassurances that I would “make it to 120” somehow, someway.
There is my family who extends unprecedented support and unconditional love from a distance:
My mom who was my staunchest, and most persuasive, advocate. Who dropped everything to comfort me. Who laid her life down to lessen my pain or ease my suffering. Who never stopped telling people of my plight in the hopes of gaining just an ounce of information that would make a difference. Who nurtured me tenderly and prayed for me earnestly. Her unwavering faith was a bright light of hope.
My dad who was my rock. He was Superman. He moved mountains while shouldering the weight of the world. He became any person I needed him to become. He played any role I needed him to play. He served any service I needed him to provided. He was the most reliable source of love, security, and God’s grace.
My little sister who had the strength and shrewdness to act as the big sister when I needed her to most. Who never judged, affording me the honesty I deserve. Who always had my back. She told me what I needed to hear when I needed to know the truth and everyone else was too worried about my fragility and walked on egg-shells around me. She was independent, not because it was easy to be or because she wanted to be, but because she knew how helpful her self-reliance was to our family.
My brother who cared throughout high school with a depth unprecedented for any teenage boy. He stuck up for me when I needed an ally. Carried the weight of the world in his tender heart, without letting that sadness taint his blissful view of the world, ruin his laid-back nature, or seep into his kind interactions with others.
My service dog who steadied me when I lost my balance, licked my tears away when I was overcome with sorrow, and warmed my bed when I had fevers and chills. His physical support offered peace of mind, but his emotional role provided a solace more profound than I can put into words. When friendship transcends barriers between species, I believe it has the power to touch and heal in a way that cannot be realized between humans.
There is my doctor:
Who I met January of freshman year. She never once questioned my testament or required me to justify unperceivable complaints. She defiantly trekked the labyrinth of confounding symptoms and conflicting evidence that caused other physicians to declare defeat. She championed my case, a case so complicated that top institutions across the country wouldn’t touch. She went up against my giant of an invisible illness before she even knew on whose behalf she was fighting. She battled valiantly without regard for whether I was an individual worthy of her undying and supererogatory care. The empathy with which she cared for me was so great that it had the power to sustain me during my darkest times. She was my life-line.
Anyone in the South Bend area who is interested in learning more about this special group of girls and their incredible stories please join us tomorrow, Thursday, March 30th from 7-8pm in Jordan Hall of Science, room 101. The Invisi-Lilies, along with members of the university’s faculty and staff, will share their unique experiences living with chronic conditions at ND. The panel will be followed by an audience Q&A.
For those of you reading this blog from a distance, I hope to have a recording of the event to share online.