Since graduating from the University of Notre Dame with a degree in neuroscience in May 2017, I have had little part-time gigs, here and there, but I have largely been unemployed. I don’t blame my peers who are slaving through 80-hour work weeks and are envious of my apparent luxury—but my situation, like almost all situations, is more complex and arduous to navigate than it may seem at first glance. The grass is always greener, for, in reality, I have been playing a full-time, round-the-clock, works-most-weekends, all-consuming role: professional patient. It’s not a job I ever aspired to fill, and it’s certainly not a position for which I applied. In fact, I have tried every strategy in the books to trick the universe into laying me off. I have begged Higher Powers to let me quit. However, the more I learn about my current career, the more obvious it becomes that it was inevitable—not in the divine destiny or fulfilled fate sense, but instead, it was literally written in my genes.
The revelations of my collagen and alpha-tryptasemia mutations were just that: revelatory. However, when these genetic changes were made known this past year, they also opened up the door to a whole new world of unknowns.
Those unknowns have been the primary focus of my life ever since. How could they not be when my life, and the life of all those with these same diagnoses, depends on it?
This summer alone, without driving myself crazy trying to reconstruct a timeline, I can safely say I have had at least 67 health-related appointments. A large number of these being out-of-state, “new patient” appointments, which, when you have the complicated medical history and voluminous records I do, are inherently time-consuming and taxing. I saw a range of specialists from gastroenterologists to gynecologists and facilitated cross-departmental collaboration between immunology and endocrinology. I worked most closely with my one-in-a-million, out-of-this-world brilliant, neurologist. Attending these appointments and accomplishing all that was necessary as a result of those doctors’ prescriptions was solely possible because of the abundant support of my friend and medical assistant, Drew, and my new friend and gracious helper, Lesley. Further, it is essential to mention with humility, immensity, and sincerity, how thankful I am for my dad to have accompanied me to so many of these meetings.
If you take a second to imagine the blood, sweat, and tears that went into making the preparations for, showing-up fully equipped, and following up on the relevant recommendations of these appointments, then it probably won’t be hard to understand why anything but forward progress in my health would be disappointing. Yet, about a month and a half ago I woke up to a migraine that has haunted me nearly every day since. It’s the kind of headache that debilitates you for inestimable portions of your day, waxing and waning on its own whim and without regard for any measures taken to dissuade it from ruining your plans. The adjective intractable would be precise in defining its defiance. The verb crushing would be accurate in explaining its impact on my spirits.
These two descriptors would also be applicable to my weeklong hospital stay that stole a festive family and friend-filled Labor Day Weekend trip to the first ND football game of the season and my first reunion with college classmates since nearly a year ago.
Despite this great physical and psychological pain, I didn’t spend my Labor Day sulking in a puddle of tears because of the thoughtful visitors, warm well-wishers, fearless physicians, and phenomenally compassionate nurses. And I didn’t cap off my summer by sinking into a pool of sadness because Mark selflessly sacrificed his own fun in South Bend to valiantly stay by my side day and night in the hospital. More than just his physical presence in emergencies or constant support through moments of weakness, Mark has helped build me up by hammering home the most important messages I could learn to carry me through, not only this particularly trying time, but also the rest of my life.
Amongst the most powerful of these lessons is one he reiterates again and again from an extraordinary speech by the late Jim Valvano, which if you haven’t seen I very strongly encourage you to take ten minutes to watch. In his moving testimony, which epitomizes the power of facing death and suffering humbly, wholeheartedly, and heroically, Valvano shares three prerequisites for a“full day.” He says every day you should 1. laugh, 2. think, and 3. be moved to tears. “If you do that seven days a week, you’re going to have yourself something special!” I can personally attest, if you take this advice seriously, you will have something so special you won’t know what to do with it.
It is through this definition of a full day that I’ve come to make peace with my current circumstances. I still pine to put in a full day of work and to move out of my childhood home, but in appreciating the value of a full day in its simplest and purest form I am freed from crippled disappointment, disabling frustration and guilt, and unproductive resentment and bitterness. Instead of counting my losses or diminishing my self-worth through unfair comparisons and self-criticism, I can instead be empowered to honor my abilities and efforts.
This mentality opens the space and makes way for our responsibility to listen to our bodies and satisfy their needs in order to thrive. Further, it challenges us to discern how to take care of ourselves without mindlessly subscribing to societally defined #selfcare.
It is only in taking care of myself that I can stomach symptoms shifting despite such a deep desire for stability. It is in learning to pace myself based on feedback from a fragile nervous and immune system that I can still have full days when storms hit. Weathering constant change and navigating necessary adjustments to “new normals” is the exhausting work of a skilled practitioner of my trade. I’m an apprentice in training and my body is a work in progress, but I’m studying the craft, honing my tools, and continuing to show up for another day on the job.
Last year, the week before Easter, I came home from my last semester on campus at Notre Dame for doctors appointments and an infusion. At that time I was regularly receiving intravenous iron to treat my chronic anemia, without any complications. What should have been a routine outpatient visit to the local hospital, turned into a catastrophe from which I feared, more seriously than ever before, I wouldn’t walk out of it alive. After an ambulance ride to the ER and 48 hours of accidental discharge and frantic readmission, I was ultimately placed on the cardiac floor, pumped full of IV antibiotics, and scheduled for an emergency surgery to remove the infected port in my chest, the culprit that had released bacteria into my bloodstream and caused me to become septic. The neuropathic pain I experienced from brain swelling that ensued from the infection pumping through my veins surpassed that of my worst nightmares and psychologically forced me into a dark place. It was somewhere darker than anywhere I had been before.
Sadly, I learned in the year to follow, once you’ve hit a new low, it’s easier to slip into those depths. Thankfully, I also learned a lot by ascending from those pits of despair. And let’s just say, in my last trip around the sun I was not short of opportunities to practice pulling myself back up!
Just weeks before graduation, upon completion of the oral antibiotics prescribed after the port infection, I developed secondary autoimmunity to neurotransmitter receptors in my brain. This, coupled with an acute sinus infection that caused by meninges to swell, landed me hysterical in the ER at Stanford Hospital, desperate for my neurologist to provide relief from yet another pinnacle of physical and psychological distress.
To call the intensity of emotions surrounding graduation overwhelming is a pathetic understatement. Overcome by gratitude for all that the Notre Dame family had gifted me over my four years, I left South Bend feeling eternally incapable of using my life and work to honor all that I had gained.
Returning home and making a post-college transition was confusing. As I tried to focus on my health, I re-engaged with doctors I had lost track of and sought new opinions from previously untapped sources of knowledge. I became obsessed with making all the right decisions and doing everything perfectly in order to recover. I most definitely lost sight of the forest for the trees and bogged myself into a mental quagmire from which nobody could extricate me. As I struggled to make sense of all the voices giving well-intentioned, but perpetually contradictory, input, it was an extremely tense time for everyone around me. I locked myself up out of a desire to fend for myself and learn how to make choices independently, but I was still crying and screaming for help, agonizing over my poor health.
When I look back on this period, I perceive it to be the most poignant example of the progress I have made in the past year. I have achieved such prominent growth in learning to trust myself, honoring my needs, and appropriately yielding to my instincts. I now feel so much better equipped to distill important messages from the noise around me, seek trustworthy advisors, more gracefully and gratefully rely on the love of my family and friends, and ultimately make better decisions for myself.
Life feels like one long discernment process and I certainly haven’t settled on anything; however, I feel like I’ve centered on the things that matter most. By continually reorienting myself, I am able to make sound decisions with a clear conscience and hopeful wishes, instead of being permanently indecisive, paranoid, and tormented by self-doubt.
By fall I was stir-crazy and in desperate need of a change of scenery. One of my doctors had recently uncovered a factor that was exacerbating my pain. Tracking my pain levels for weeks and then retrospectively comparing the values with shifts in the barometric pressure revealed compelling evidence that the tumultuousness of Philadelphia’s weather has a negative effect on my symptoms. I used this revelation as justification that I simply had to escape to the most beautiful climate available, before the temperature dropped at home. Off to California I went (but not alone)! Paddy and I had one heck of an adventure, starting in Los Angeles and settling at a home-away-from-home with my “chosen” extended family in the San Francisco Bay Area. Mr. and Mrs. White were exceptionally, albeit characteristically, gracious in hosting Paddy and me while I tried to figure out what to do next professionally and medically. I was introduced to a friend of Mrs. White who kindly shared the story of her family’s humbling experiences dealing with chronic illness. After some research, I decided to continue my journey onto Arizona in hopes that I could benefit from intensive treatments at the biological medicine clinic where she and her sons had found answers and seen improvement.
The American Center for Biological Medicine in Scottsdale, AZ was founded on the principles and teachings of the doctor whose clinic my mother and I visited in Switzerland back at the beginning of this blog in 2015. As always, my parents and Mark bent over backward to make this possible and then offered unwavering support in my decision to leave the program early after feeling uneasy about my first couple weeks under the care of the Naturopathic Doctor.
At this time I was disillusioned and pessimistic about the prospect of breaking out of this six-month rut in my physical health. I was not only lost, but I was experiencing fatigue so debilitating it was reminiscent of the period when I returned from South Africa in 2010 and spent months on bedrest, barely able to hold my hands up long enough to wash my hair in the shower. Something had to give and thankfully this time I didn’t have to wait long for the ball to begin rolling in the right direction.
Through the years of pouring over all the research conducted on POTS to date and becoming involved with scientists dedicating their life’s work to our cause, I have been fortunate enough to meet lots of remarkably resilient Dysautonomia patients. I was particularly lucky to become friendly with the extraordinary woman who founded Dysautonomia International. Simply put, Lauren Stiles is astonishingly impressive! The POTS community is so fortunate to have her as our fearless leader and I feel truly blessed to have her as a role model. Thanks to the efforts of Lauren and her amazing team, over the course of a weekend in July I had the privilege of attending lectures by all the top physicians and researchers in the field gathered in a hotel in Washington D.C. Not to mention, I met even more extraordinarily inspiring patients and caretakers! Before leaving Arizona, my dad encouraged me to take a shot-in-the-dark and request an impromptu visit with the neurologist who had received the Dysautonomia International Physician of the Year award the previous summer. To my greatest surprise, Dr. Brent Goodman, agreed to squeeze me in for an appointment and to undergo full autonomic testing at the Mayo Clinic in Scottsdale the day before I needed to fly home for another visit with a specialist in Philadelphia. After just a couple minutes with Dr. Goodman it became clear that I was foolish to have been so shocked by his willingness to take me on as a patient because he is amongst the most compassionate and thoughtful physicians I have encountered in all these years. This time, I wasn’t crawling my way out of a hole, Dr. Goodman was reaching down and lifting me up. Heck, I was levitating with excitement about the possibility for improving in his hands!
The morning after I landed in Philadelphia I had an appointment with an immunologist at the University of Pennsylvania Hospital. I had scheduled the appointment all the way back in June when I first came home from school and was running around like a possessed chicken with its head cut off seeing any specialist I thought might have even a nugget of useful information. The doctors I saw that day turned out to be worth the wait. Again, amazed by the compassion of Drs. Takach and Patel, I was thankful for the confidence being instilled in me that brighter days were ahead.
Halfway through the lengthy appointment, an email popped up on my phone that I needed to open right away. After being so wow’ed by my experiences with Dr. Goodman, I didn’t think I could think more highly of him, but yet again I was foolish to underestimate his dedication! While sitting in the office with my Drs. Takach and Patel, Dr. Goodman had reached out to me with blood results that had come in overnight from a workup he ordered the day prior. He was forwarding me the very relevant findings of an immunoglobulin deficiency because he remembered I was seeing a new immunologist and he didn’t want me to miss the opportunity to discuss the results with her. It was another piece of the puzzle, a nugget of hope to hold tenderly.
As I settled into life back at home, I remained unsettled by the lack of clear direction for my treatment. With Dr. Goodman on the other side of the country, I needed to look for someone local to coordinate my care. I needed to draft a big-time player to be my quarterback, so we put together a list of people who were familiar with my case and tried to determine who might be up for the challenge. We reached out to a neurologist at Jefferson who I had seen in August 2016 for a brain health evaluation. At the time he had put together an outrageously thorough review of my case, but the timing was unfortunate because I was headed back to South Bend the next day to begin my senior year and I was too overwhelmed by the upcoming semester to fully appreciate the extent to which his care could change my life. Ever since Dr. Mijail Serruya agreed to be a champion for my cause, he has done just that: changed my life. In his eagerness to establish relationships and remain in communication with my other treating physicians, he has taken the weight of the world off my shoulders and allowed me to “Trust the Process.” He has answered every question I’ve thrown at him, sincerely, meticulously, and highly intellectually. He is always humble enough to admit when something is out of his wheelhouse, but also so honorably willing to put in the time and energy to research all relevant leads. He leaves no rock unturned in his pursuit of relieving me from my chronic pain and disease.
After years of turning over rocks to no avail, I finally gained information from whole-exome genetic sequencing which elucidates, to some extent, the etiology of my conditions. I learned this year that I possess a mutation in one of the genes that encodes for collagen. This corroborates my clinical diagnosis of Classical Ehlers Danlos Syndrome (EDS). EDS is a hereditary connective tissue disorder that causes hypermobility and a host of related symptoms, most notably, chronic pain. While this has long been suspected in me, due to a significant overlap in POTS patients with hypermobility, I greatly appreciate the ability to swap question marks for periods in my head. Even if it often leads to more question marks, hahah!
Back in 2015 my primary care physician, Dr. Daphne Goldberg, who quite possibly possesses the most brilliant mind and purest heart I’ve had the honor of witnessing, began treating me for Mast Cell Activation Syndrome (MCAS). Relying upon her exquisite intellect, keen intuition, and overwhelming intimacy with my case, she was able to pinpoint the issue that was hidden like a needle in a haystack. Years later, POTS doctors are finding an increased prevalence of this condition and by treating accordingly their patients are improving on many fronts. We recently contacted the scientist at the National Institute of Health (NIH) exploring this issue because the NIH has reportedly uncovered a genetic variation that accounts for a number of multisystem disorders such as POTS, EDS, and MCAS. The wonderfully helpful study coordinator offered to test me for multiple copies of a gene that encodes for tryptase and is predicted to be an explanation for the elusive syndromes I have been labeled with over the years. He called to inform me that I tested positive and indeed have what they are calling Hereditary Alpha Tryptasemia. Yet again, due to the lack of research to date, this leads us to a bit of a dead end with regard to viable treatment options, but it also delivers us hope in what we might learn through future research down in Bethesda, MD and around the world.
For now, it feels good to be from Philly! I am living in a city of champions and thankful for the team of doctors working together to champion my cause. Dr. Serruya, through the support of Drs. Heiman-Patterson (my neurologist at Temple), and Drs. Takach and Patel, are executing and overseeing the recommendations of Dr. Goodman. Throughout March I underwent seven rounds of plasmapheresis to clear any circulating autoantibodies. Then, on March 23rd I received my first 20 grams of intravenous immunoglobulin (IVIG), which we plan to continue biweekly for the next 6-9 months.
Unfortunately, in the 48 hours following the infusion, I developed aseptic meningitis, a painful complication of the IVIG. Flat on my back with terrible head and spine pain for six days, every time I crawled to the bathroom I questioned how I will endure this every two weeks for months on end. The symptoms were alleviated by IV steroids and fluids and on Good Friday I woke up feeling as if a veil had lifted. SHE HAS RISEN, just in time for Easter! It is surreal to say that for the first time in three years I had two days in a row that were better than my baseline. While this may seem like a small victory, it is so much more than that. It is the unquenchable hope that I will attain enduring health and happiness. A privilege I would owe to all the people who have stood by me, including most loyally, lovingly, and selflessly, for the last two and a half years, Mark Grasberger.
There’s no beating around the fact that over the past year my health has been very poor and it’s been a constant battle to keep my head above water. I opted out of having laparoscopic surgery to definitely diagnose highly suspected endometriosis, a condition which has caused me tremendous pain and angst. I am currently in pelvic floor physical therapy 2-3 times a week to counteract the joint instability that results from my connective tissue disorder. I have been unable to suppress an Ulcerative Colitis flare that has required two colonoscopies, multiples protoscopes, countless rectal swabs, many stool samples, nightly suppositories and enemas, and caused rectal bleeding every day since August. I have a daunting 6-9 months ahead of me with bi-weekly IVIG, complete with intensive complication damage control. Frankly, I still struggle every single day with the same symptoms I have complained of for years and continue to be haunted by the unnerving unpredictability of my body. However, I have a better sense of self and greater confidence in my ability to make decisions. I continue to learn how to take better care of myself and appreciate the care of people that fill me up and enhance my quality of life. I am grateful because, at least for today, I am thriving on hope and that feels a “hell of a lot” better than the alternative.
I have long appreciated my membership in the “Notre Dame family,” but it wasn’t until very recently that I finally discovered my favorite ND family tradition! (Spoiler alert: it has nothing to do with the football team) ….it only took me twenty-three years as an ND fan and four years as an ND student to figure out what it is and to understand why I care about it so deeply.
Just days before I’ll drive away from this great university for the last time as an undergraduate, I realize why returning to South Bend, Indiana will always feel like coming home. I will always feel at “Home Under the Dome” because this is where I grew up. The classmates who became my sisters and brothers shaped me. The professors who became my parents raised me. This is the place that molded my nature and houses the teachers who consciously crafted my character and preachers who carefully created my conscience. I was formed by the challenges and compassion I faced at Our Lady’s institution.
Notre Dame made me who I am because it taught me “We are ND,” and therefore: I am ND. Due to the enthusiasm with which I embrace my ND identity, I will be proud as a peacock to join my friends marching into the stadium flaunting a “Stole of Gratitude” at Commencement. By wearing this shiny shroud, I will be excited to show everyone I see how overwhelmingly thankful I am to enter a club of ND alumni. I am thrilled to be tagged with this lifelong label and live henceforth in this community of charity and camaraderie. And because I am beyond thankful for that honor, I am also grateful beyond belief for all the acts of compassion, big and small, that allowed me to walk with the Class of 2017 this May.
I have grown to appreciate just what it means to be a member of the ND family, and although I have often bemoaned the inconvenient location of its campus, for the past four years I have considered the space surrounding Our Lady’s throne my homeland. What my growing appreciation for tradition has taught me is that these rituals allow one to carry that “home” in their heart, no matter where they travel or reside, and to hold that “family” in their arms, no matter how few and far between their interactions. These are lessons I can carry with me and keep within my possession forever, parting gifts for which I am eternally and entirely thankful!
If the immensity of the gratitude I feel for what this school has done for me could be represented by the weight of the “Stole of Gratitude” I don on Sunday, I am as sure as I am of the predictability of gravitational force that it would be too heavy for me to carry on my shoulders across the stage. However, if for a moment I indulge my fantastical thought and imagine wearing a garment that truly embodied the magnitude of my gratitude, I quickly realize the problem. I recognize it would be hard for anyone to know whether my gratitude was too great or my legs were too weak. If I fell on my face in front of the dean presenting my diploma, no one would know for sure whether it was because my heart was too full or my cross was too heavy. That is the danger in trusting that the truth can be known by what our eyes see and our brains assume. My life is characterized by realities invisible to those who don’t take the time to see more than meets the eye, and therefore, I feel compelled to take this unique opportunity to quickly offer what I consider a crucial message, but humbly acknowledge to be espousing so assuredly and eagerly out of self-interest:
This celebration does not mark the defeat of my chronic illness. You will be deceived if you perceive my high spirits as a sign of health. You will be mistaken if you consider dancing the night away in the barn after Baccalaureate Mass as proof that I am “better.” Silly are you for interpreting my smile as I strut across the stage on Sunday as a signal to the end of my suffering.
I am an Invisi-Lily, so you will not be able to see the hurt in my muscles, the ache in my joints, or the pain in my nerves. Nothing on my face will show you that my family and I spent more days in the past month thinking I was going to die than trusting I would make it to tomorrow. My hugs won’t make you aware of unexpected hospitalizations this spring as a result of a bout of encephalitis and a surge of reactive autoimmunity. My laughter won’t share the secret of spending Easter week in Bryn Mawr hospital or exam week in Stanford hospital. My cap won’t tell you the tale of my recent health crises that warranted four trips to the emergency room in two weeks. My gown won’t show you the story of countless sleepless nights as a result of autoimmunity, infection, and stress gone awry.
However, please don’t assume I wish you could see that sadness on my face or hear that heartache through my laughter. I am thankful my internal dysfunction can be hidden. I appreciate the ability to “fake it” as skillfully as I do because it allows for more care-free FUN! This capability, the chance to let my hair down and momentarily forget my struggle, is only made possible through the help of my family and friends. Therefore, I do not want them (or anyone I encounter) to be forced to confront painful thoughts at a time when celebration is in order or to face devastating dysfunction when festivity is the priority.
And yet, it is because I am blessed to graduate from the University of Notre Dame that you will be able to see what I want you to see most: my gratitude. Around my neck you will see a stole that shows you my heart. The piece of cloth draped over my chest provides the opportunity for everyone who sees me to peer into my heavy heart—a heart overflowing with gratitude.
When you congratulate me and I thank you, please accept that as:
appreciation for acknowledging my achievement,
thanks for taking a moment to respect my resilience—but,
most importantly, please see the sincerity and seriousness of my gratitude.
This Sunday, and hopefully forever more, I stand behind my sentiment: my gratitude is as grave a reality as gravity.
So, for those I don’t see this weekend, thank you for the times you helped me defy gravity.
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.
(from Hope through Heartsongs)
by: Mattie J.T. Stepanek
I don’t know what normal is
That’s because Normal has been changing
For a long while of lately.
I’d Like normal to be
I’d like normal to be
I’d Like normal to stay
For now though,
I know that normal won’t be normal
For a little while…..
Even if things are not normal,
They’ll be okay.
That’s because I believe
In the great scheme of things,
– 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/.
The past two weeks have been a whirlwind. It felt something like that outdoor drinking game involving a wiffle ball in which the batter is required to chug a beer, place their forehead to the end of the bat and spin around x amount of times before proceeding to swing at the ball being lofted toward him or her….Or, at least, that is what I imagine it would feel like if I was able to engage in even one of the first couple steps without throwing up or passing out.
Needless to say, the recent and intentionally uncharacteristic eventfulness of my life had me spinning in circles. It wasn’t until the hoopla had subsided and I had a chance to catch my breath and reflect that I realized I had been spun in a pretty impressively precise full circle.
Four years ago I stood at the head of Alumni Chapel at the Hill School in Pottstown, PA to deliver a short speech on my 19th birthday. “Chapel talks” have long been a senior privilege in a boarding school rife with tradition. Therefore, I felt a sense of pride and thankfulness in addressing the Hill family from the pulpit that morning. I took this exciting and unique opportunity to address my school to explain why I was turning 19 that day, a year older than a typical American 12th grader, and how I ended up at Hill. This necessitated an abbreviated, albeit honest, exposé of the unexpected onset of a chronic illness that derailed my high school career and college plans following a trip to South Africa as a student-athlete just two years prior. My goal wasn’t to garner pity, but rather to reveal a truth about me that few knew because the only observable differences in me were elevator access, athletic exemptions, and various accommodations.
Four years of friendship flew by with this guy…
Just a couple weeks later, on a short weekend visit home, my dad asked if I would be interested in running the famous Philadelphia Broadstreet 10-Miler the next morning. Thanks to the intensive physical therapy that originally got me off of bed rest and maintained during my time at Hill, I felt in decent enough shape to give it a go. I felt sorry for my dad’s colleague who had injured himself badly enough to warrant a forfeiting of his “bib” for the race, but I liked the idea of running alongside my hero through the city for which he had so much pride.
Fast forward to the very recent past: just last weekend was my 23rd birthday. A few days earlier I spoke publicly about my life as a college student with Dysautonomia and my various co-morbid autoimmune conditions in an attempt to raise awareness about invisible illnesses in the Notre Dame community. The campus-wide campaign sought to teach classmates, professors, and administrators more about what it is like to live with a sickness no one can see. The panel I moderated in the front of a lecture hall was the first time I stood in front of a crowd to tell my story since my 2013 “chapel talk,” this time an even more abbreviated version. The turnout for the event was humbling and moving. I will never be able to express enough gratitude to all of the people who showed up at 7pm on a school night to show their support.
The aftermath of the day wasn’t pretty, and it caused me to seriously question whether my body would bounce back quickly or sufficiently enough to allow me to run the Holy Half, Notre Dame’s annual half marathon that I had hoped to run last Saturday morning. I went to bed the night before uncertain if I could handle the race and, although I bundled and laced up to run the following morning with the intention of running, I was still largely unsure whether it was feasible. However, inspiration abounded from my dear friend whose injury was yet again the reason I was gifted with a racing “bib,” her amazing mom who cheered so emphatically throughout the day that she sadly sustained her own injury, a South Bend sun that shined uncharacteristically strong, reflection on people near and dear to me, and finally, the chance to cross the finish line again, hand-and-hand with my hero.
Back in 2013, during the spring of my senior year, I hadn’t specifically trained for the distance my dad was asking me to run, so I could have used the fear of it being too much for me to handle physically as an excuse for not trying. Instead, I did something that I only now realize (since a musing during the race last Saturday, to be precise) has been my strategic approach to everything I have accomplished since I fell ill in 2010. I lost a lot of faith in myself and in the certainty of the future when I was blindsided by the onset of my condition and my life was turned upside-down. As a result, I struggle mightily to believe in my capability and to trust that whatever tomorrow brings will be manageable. However, the approach I developed is one I employ every day, and I cannot overstate its value and the positive impact it has had on my life. It’s not heroic and certainly doesn’t require superhuman will or strength. Given the unpredictability of my symptoms, if I let the fear of not knowing whether I was going to be able to complete something prevent me from starting it, my life would be stagnant…so, I simply give myself the benefit of the doubt.
I don’t let myself wonder how well something will turn out because I might end up in the bathroom unable to see it through to fruition. I don’t contemplate the success I will achieve on a project because who knows if I’m going to be healthy enough to submit it on time or present it in class. I don’t try to predict my semester grades because I could end up home in the hospital on medical leave any day of the week. As sad as this sounds, I don’t dream about an ideal career or the picture-perfect family because so many aspects of those realities are currently unattainable. This may seem dismal and depressing to live so minute-to-minute, but the appreciation for the present moment coupled with a benefit of the doubt has done wonders for me. It has gotten me within mere weeks of graduating on time with my class this May, and as anyone who has followed this blog knows, that in itself is miraculous.
Invisible illnesses and this reflection are alike in the way they challenge people to consider that which they cannot see, to delve deeper than the surface. Therefore, even though these past weeks so picturesquely mirrored this time four years ago, I trust the resemblance is far more nuanced than first glance. What I did may look eerily similar, but how I felt doing it was profoundly different. What I said might have sounded the same, but the intent behind sharing my experience was subtly, but importantly, different. Today I celebrate the similarities and differences of these weeks with four years between them. I cherish both the similarities: the family I’ve held dear, the friendships I’ve treasured, and my faith that often sustains me. And I appreciate the differences: the growth I’ve experienced, the lessons I’ve learned, the knowledge I’ve gained, and the progress I’ve made as a result of giving myself the benefit of the doubt.
I wouldn’t mind if sometime over the next four years I rid of my public speaking anxiety. I have a team of doctors who would be thrilled if my autoimmune neuropathy halted and my health improved to the point that I could run the Boston marathon four years from this Easter Monday.
But, if none of those things happen, I will be thankful for my family, my friends, and my faith. I will honor them by giving myself the benefit of the doubt.
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.
It is fitting for Rare Disease Day to mark the end of Black History Month this year, for in reflecting on the current state of our nation, as the civil rights activists did decades ago, the Rare Disease community is faced with a fundamentally synonymous problem: exclusion from the narrative. In the 1960s the famous Baptist minister from Montgomery, Alabama, Dr. Martin Luther King Jr. counseled his fellow black Americans in fighting for inclusion by resisting segregation, racism, and injustice. His goal was a specific, intentional form of resistance: “strong, steady, loving, believing,” and most memorably, nonviolent. The people he led on marches and sit-ins did not follow blindly, though. Dr. King was often asked, “Isn’t negotiation a better path?” To this he offered this simple, yet powerful response: “Indeed, this is the very purpose of direct action.” He recognized these efforts as the only way to “dramatize the issue” to the point it could no longer be ignored. Nonviolent direct action sought to compel a community, that consistently refused to negotiate, to confront the issue with representatives from all parties–major or minor, oppressive or oppressed, powerful or powerless.
Although they wouldn’t necessarily identify themselves as such, I had the humbling experience of working alongside nonviolent direct action seekers this summer at Amicus Therapeutics, a biopharmaceutical firm dedicated to the development of “advanced therapies to treat a range of devastating rare and orphan diseases.” The company’s efforts are centered around their mission to discover treatments for the unrepresented minority of healthcare. What makes their method of obtaining these ends unique and particularly noble is their commitment to keeping the patients center-stage. Amicus forges forward on promising research and drug development, all the while staying ever-mindful that the sufferers of rare diseases are often left to flounder on the periphery of mainstream medicine today. Thanks to Amicus and organizations like the Global Genes Project, people with rare diseases are no longer excluded from the health care narrative. They are invited to the table to negotiate.
Just as Dr. King’s “dream” inspired a better existence for his people, my dream is that one day the sufferers of rare diseases will enjoy this privilege, too. For today, though, my hope is that anyone who reads this takes a moment to recognize their life is just that: a privilege, something to celebrate and cherish. Our country was once moved by civil rights activists giving their lives for a cause. Today, let us honor the people with rare diseases simply living their lives, an act that is nothing short of heroic.