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. 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. 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 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. 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. 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 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 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. Spoiler alert: it has nothing to do with the football team …. 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.
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 this May.
These are lessons I can carry with me and keep within my possession forever, parting gifts for which I am eternally and entirely thankful! 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. 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. 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. I am thankful my internal dysfunction can be hidden. 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.
Some Kind of Fairy Tale
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. This Sunday, and hopefully forever more, I stand behind my sentiment: my gratitude is as grave a reality as 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. 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. With the removal of the port and administration of IV antibiotics, the catastrophe was quickly resolved. 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. 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.
- A Wiggly Way Through England: Wandering the watershed in search of history, characters and cakes!
- Secrets de feu - Le retour dAusten Hart : Passions Extrêmes (French Edition);
- Father Frost | Fairytale Wiki | FANDOM powered by Wikia.
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. 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 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. 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. 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.
The Elements of a Fairy Tale
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. 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 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.
Like a family member, it sits down to meals with us and talks to us in the lonely afternoons.
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. 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. Spoiler alert: We couldn't agree more. Click through to see a sneak peak of the exact kind of fairytale that should be on every kid's required reading list.
Chaz Harris, Co-author: Both myself along with my friend and co-author Adam Reynolds were bullied all through High School and neither of us saw ourselves represented in stories or in the world around us. My own peers had already absorbed the message that being gay was such an awful thing and that created a sense of shame about who I was when I was still trying figure that out.
I think I spent a long time denying it, to myself and others, or wishing I could change it. For me, the only representation in media of gay people in my youth were guests I saw on Oprah , which I would watch at home when I couldn't face going to school. That's the first time I saw the faces of other people who were gay, and it meant if I was myself, I wouldn't be the only one.
I think that void of representation in childhood creates the 'otherness' and sense of abnormality a lot of LGBT people experience.
The lure of the fairy tale.
In fact, I think you could say that about representation in general and how it can impact young people still learning about and coming to terms with their identity: if you don't see yourself in stories, you don't see yourself in the world, and the world is a much better place with you in it. CH: Well, because people think it's a great story, with adventure and magic and two male characters who happen to fall in love along the way. A lot of existing books tend to make diversity the story, instead of featuring LGBT characters as part of a wider story that stands on its own.
When the stepmother sees what her stepdaughter has brought back, she orders her husband to take her own daughter out into the fields. Unlike before, this child is rude to Morozko, and he freezes her to death. When her husband goes out to bring her back, the dog says that she will be buried. When the father brings back the body, the old woman weeps.