It’s Wednesday, which means that it’s either life as usual or I’m headed to the infusion center. Today, it’s the latter, and I’m in the passenger seat gulping water and squeezing a stress ball, hoping both activities will allow the nurse to find a vein on the first stick.
For almost 7 months now, I’ve been receiving the drug I did well on in the clinical trial–IVIG. My mom drives me to every biweekly infusion for three reasons: firstly, she is kind. Secondly, if parked for 4 hours in Texas, the car will be hotter than a sauna in hell. And thirdly, in 4 hours, I will be too sleepy to drive myself home.
As I settle into the cush infusion chair, the nurse asks if I brought anything to work on today. It takes me a moment to remember that I didn’t, that I no longer have papers to write because I’ve finally completed my degree. When I tell her this, I learn that she went to UT for her undergrad too. “Best 5 years of my life,” she said.
I am the elephant in the infusion room. Every patient is older than me, some by 60 years. Before receiving our medications, the nurses always ask us to confirm our date of birth. I can’t help but feel self-conscious saying the year “2000” aloud.
Two infusions ago, I finished reading Tales of the Jazz Age, a collection of short stories by F. Scott Fitzgerald. The first story was my favorite, “The Curious Case of Benjamin Button.” It tells an imaginative tale of a baby who is born an old man and ages backwards. As the patient across from me tells the nurses about the challenges of growing old and developing more and more ailments, I can’t help but think about how my life is the reverse of hers: how I’m young and my doctor tells me that my condition might actually get better as I get older, when my immune system (hopefully) calms down.
Am I Benjamin Button? Is this what it feels like?
A picture of my copy of F. Scott Fitzgerald’s Tales of the Jazz Age.
After I’m unhooked and discharged, I walk to my mom, who is waiting for me in the car with the AC on full blast. On the way home, we pass the arena where I graduated high school. I point it out, and we remember. Now, 6 years later, I’m graduating college.
Anyone who’s been reading this blog (and by the way, thank you) probably knows that the past several years have been bumpy for me. I’ve really enjoyed my time at UT, yet I can’t say that college was the best years of my life. In fact, much of my earlier experience was quite traumatic–starting college out-of-state only for my health to deteriorate and be thrown into the adult medical world, alone and 800 miles from home.
It’s painful to remember where I started and what I lost along the way. But reflecting on the past also makes graduation even more meaningful to me, because of how often I doubted whether I’d ever see this day.
My graduation was a practically perfect afternoon. Miraculously, Texas had a mild (emphasis on mild) cold-front, and the weather was lovely–not too hot for May. All of my close family were able to attend, and I snagged extra tickets for my brothers, who made it back from their Boy’s Trip just in time.
The ceremony for English and History majors took place in an auditorium on UT’s campus. Funnily enough, though the official colors of UT Austin are white and burnt orange, the colors for the ceremony were the official colors of my previous college: blue and red. In fact, several of my classes as a musical theatre major were held in auditoriums. As I sat next to my UT classmates, I felt like I was in two places at once.
A picture of the English and History graduation ceremony at UT.
I knew that as part of the ceremony, I was to walk across the stage and receive my “diploma” (the real documents are mailed afterwards…), but I underestimated how weird that would feel for me. As my row lined up backstage, I stood in the darkness, shocked at how strange it was to be back here again. It was both familiar and foreign, and also sad–I used to love this place, had once felt so comfortable in these wings.
I managed my entrance without tripping, and waved to my family in the back. Even with POTS, just having to walk was easy enough. No lines to remember, no dance numbers or songs.
After the ceremony, my family and I took pictures at the UT tower. For a brief moment, I time-traveled back to when I was a freshman, sitting near Belmont’s bell tower. I’d always imagined I would take pictures there when I graduated.
I’ve been thinking a lot lately about whether our lives are fated, and how much say we really have in the people we are. A few days before the ceremony, I stumbled across a picture from my high school graduation. In it, I’m standing next to my grandma, holding my grad cap, which I had decorated with the name of Belmont inside the shape of Tennessee. I’m smiling at the camera, thinking I know exactly how my life is going to go. It wasn’t until recently that I noticed my grandma is holding a book by Virginia Woolf, a writer I had not yet read and would later become my favorite class as an English major at UT.
A picture of me and my grandma at my high school graduation.
Life is unpredictable, absurd, cruel, and beautiful. At many points along this journey, I got woozy from all the twists and turns. For a stretch of time, hope was hard when all I saw was darkness ahead. But in the words of Chanel Miller, another favorite writer of mine, “You have to hold out to see how your life unfolds, because it is most likely beyond what you can imagine. It is not a question of if you will survive this, but what beautiful things await you when you do.”
At UT, I got a second chance. I learned there is life after loss, and I discovered that I had more interests than I knew, beyond music and theatre. As for what’s next, I’m working on finding a full time job so that I can have health insurance when I turn 26… And am hoping to land somewhere cooler, eventually.
I wasn’t planning on taking a break, and I also wasn’t planning on having such an eventful summer. Two summer classes kept me busier than I thought I’d be, and I took my first solo trip to visit my brother in North Carolina. Traveling alone taught me that I’m capable of more than I believe, and through my physical anthropology course, I learned more about being human. Weeks later, when my uncle and grandfather passed away, I learned a lot about grief, too.
I learned that grief can be sneaky. It can show up in unexpected ways like stress, poor sleep, and sharp, short tempers. I learned that grief reveals as much about death as it does about life, and that in many ways, grief is like plunging the heart in frigid water. Once the initial, blinding shock wears off, the fierce cold intensifies each and every breath, reminding the body it is acutely alive.
In the midst of my grief, I started a new semester of school. With a heart stuffed with sorrow, hope, and longing, I stepped foot on a college campus for the first time in 2 years. Feeling more like a kindergartener than a junior in college, I navigated quaint classrooms and picked seats in rooms full of socially-distanced students. The ordinary had never felt so peculiar. In the excitement of a new school year and the heaviness of my grief, I had never felt so sad yet so hopeful at the same time.
Going back to school has been a fresh new beginning for me. I entered a new school with a new major and a body with a new baseline and limitations. Walking around campus with a backpack full of beta-blockers, I felt nothing like the freshman I was in 2018. Strolling underneath the verdant trees on campus, I’d almost forgotten how traumatic my prior college experience was. Almost.
Last Friday, as I made my way out of class, another student stopped me in the stairwell.
“Do you watch Grey’s Anatomy?” she asked, catching me by surprise.
It took me a moment to register that she was talking to me, and another moment to realize the weight her question held.
In an instant, I was transported to my freshman dorm room where I was limp in my bed, watching Grey’s Anatomy on repeat. Exhausted from the ER visits and doctor’s appointments I’d wedged into my full schedule, I used the television series as an escape, as solace. Grey’s Anatomy eased my initiation into the medical world, and some part of me cherished watching the fake doctors fight hard for their patients. In my fear and overwhelm as mysterious symptoms took hold, I couldn’t help but hope some doctor would do the same for me.
“I used to, yeah,” I managed.
“You look a lot like Jo. You know, the one who was Alex’s girlfriend.”
Under my mask, my face flushed and I smiled.
“I take that as such a complement, because she’s so pretty!” I said.
Photos of Camilla Luddington, the actress who plays Jo Wilson in “Grey’s Anatomy.”
We pushed through the heavy doors, ripping our face masks off as we plunged into sunshine. The humid air felt tangible as she asked me where I was from.
“You’re from overseas, right?”
“I’m not but my parents are, actually.”
Too stunned to do anything else, I smiled. In some way, it was like she already knew me. Like we were already friends.
We chatted for another minute before parting ways. I walked away, feeling a little dumbfounded by our conversation.
While her questions were fairly typical, and her comment a mere passing thought, what she said felt profound to me. It was a complete, full circle moment.
Immersed in my Fresh New Beginning, I naively thought my past couldn’t catch up to me. I thought what had happened in Nashville would forever stay in Nashville, and that as I healed, the hard memories would rest somewhere far behind me.
But as I drove home that day, I realized that even though the past is the past, we carry every moment of our lives with us, into the next. The part of me that was sprawled out on my dorm room bed, glued to episodes of Grey’s Anatomy and gaining awareness that an illness was beginning to wreck my life, walks with me on UT’s campus. She looks up at the same beauty in the sturdy trees overhead. She feels the same shimmering sunlight glittering upon her face.
That girl’s comment felt like a reminder to take note of where I am, how far I’ve come, and how much of my life has changed. Her words were like confirmation that I’m in the right place upon the right path and no fatal mistakes have been made. In her encounter, I found permission, encouragement, and guidance to keep going, to keep moving forward, to have faith in what comes next.
Sometimes I wish POTS had never happened to me. Sometimes I wish my life had never been interrupted by the pain, the loss, and all the grief it’s brought me. Without POTS, my life would certainly be easier, and if I could wake up tomorrow cured, I would in a heartbeat. But I also know that without this deep well of pain, my joy would be much more shallow. I wouldn’t know how lucky it is to stand in the shower because I wouldn’t know how much it hurts to have the ability taken away. I wouldn’t live my days with as much intention as I do, because I wouldn’t value my energy as a currency that’s finite.
In the words of Nora McInerny, “We don’t ‘move on’ from grief. We move forward with it.” And each day, as I load my backpack with books and salty snacks, I make some space for that exhausted, fearful freshman. She deserves this new beginning just as much as I do.
It’s 8:30pm and I’ve just showered and put away my clothes. A year ago, I had to lie down after completing both of these activities. Less than a year ago, I had to take breaks whilst doing the latter. Fold the pants, lie down on the floor. Hang up the shirts, then back to the floor. Today I did both of these things, without surges of fatigue and weakness.
Healing takes time, but it is possible.
At times, I focus so intently on moving forward that I don’t let myself stop and reflect on the past. The act of reflection still feels risky, as if too much thought will teleport me back into those treacherous days. A part of me still feels skeptical about whether the progress I’ve made will last, but it’s not foolish, wishful thinking to say I’m doing much better these days. Even if saying so still feels like a hopeful aspiration, it is not premature, exaggerating, or anything close to a fib.
I’m still learning how to finally settle into this truth.
But as it turns out, I’m still really angry about what it took to get here. To get back to the place where I can hang up clothes and take a shower without exhausting myself. It took over a year of physical therapy, of dedicating and centralizing my life around a rehabilitation program. It took drastic changes in my diet, cutting out gluten, processed sugar, peanuts, fermented products, most dairy, basically a whole lot of food that makes life worth living. It took over a year of gastric distress, finding out what works and more disappointingly, what doesn’t.
It took one year of trying and failing, one year of the tiniest baby steps. It took one year of hoping, and not being able to stomach my numerous doubts. Before all this, it took two years of unexplained symptoms and a year and half of medical trauma. In total, it took three years of feeling unwell, every day of my young adult life.
It took too much to get here, and yet somehow, I still feel grateful.
A picture of me with takeout from P. Terry’s, a go-to restaurant of mine that accommodates my many food restrictions. #PTafterPT
I wonder how long my fury and gratitude will be able to coexist. When it comes to my health, I can’t seem to feel gratitude these days without also feeling eclipsing rage. The two are wrapped up against each other, tangled like a knotted necklace that only exasperates me.
I wonder if they’ll ever untangle or if they’re now forever intertwined. I’m hoping for the former, but I guess I’ll have to get back to you on that.
While it devastates me, all it took to get here, part of me feels a sense of pride. I fought like hell to rebuild my life, brick by brick, hour by hour. It’s worth mentioning I didn’t do it alone, that I couldn’t do it alone, and am privileged to have the resources I did. It takes a village to cope with chronic illness, and I thank every family member of mine, every friend who ever checked in on me, and every doctor, physical therapist, dietician, psychotherapist, and health professional that contributed to my care.
Yet in all transparency, the monotony of my current reality frequently frustrates and underwhelms me. While I’m ecstatic to be physically able to put away my clothes again, I feel discouraged about being cooped up inside, isolated within the same scenery I was in whilst being housebound over a year ago. I wish I were spending these days of better health going out with my friends, studying on campus, making the memories I missed out on, rather than continuing to stay cooped inside the same house my illness confined me to a year ago.
Yesterday morning I woke up to the news of a possible, serious gas leak. I was instructed not to use any appliances and was warned that even simply flipping on a light switch could be enough to prompt an explosion. (No biggie.) With the stealth of a ninja, muttering on repeat, “I will not turn on a light switch, I will not turn on a light switch,” I collected my things and adventured to my grandparents’ house, who conveniently live next door.
Double-masked and bundled up, looking around my grandparents’ living room, it occurred to me it’s been nearly a year since I last stepped foot in their home. Obviously, this wasn’t an ideal situation, as they haven’t yet had their second vaccine and I hadn’t completed a full, proper 14 day quarantine, but despite my nervousness, I was elated to see them nonetheless, and get out of the house for a change.
Picture of myself, exasperated by 2021’s unrelenting curveballs.
In one of my current classes at school, we recently read Story of Your Life, which is a short story by Ted Chiang, a popular science fiction writer. This story later went on to inspire the movie Arrival, and it deals with 2 concepts of awareness: simultaneous consciousness and sequential consciousness. I’ll try to spare you from all the elaborate, complicated details, but essentially, sequential consciousness is how us humans perceive our lives: one event follows the other and the future is always unknown. With simultaneous consciousness however, the past, present, and future are experienced all at once, so the future is not only predetermined, but it’s explicitly known ahead of time.
Obviously, it’s unlikely I will develop simultaneous consciousness in this lifetime and I am unfortunately doomed to live out my days with complete ignorance of the future. But every now and then, I swear I’m in that short story, getting glimpses of the future, of memories I’ve not yet made but will make, in time. They’re almost like visions (dramatic word choice, but let me live..) and in every one of them, I can see myself happy, surrounded by people again.
I had one of these “visions” while at my grandparents’ yesterday, and it filled me with hope that one day, my isolation will end. Sitting at their kitchen table, in the same place I have throughout my childhood, I experienced what can only be called ‘flashbacks of the future.’ I saw myself hugging friends, without masks, our smiles visible. I saw myself finally reuniting with family, embracing without hesitation.
It won’t be much longer until I am spending afternoons with my grandparents again, and when I do, it won’t be only when emergency strikes (spoiler: there was no gas leak). It won’t be much longer until I am seated at a restaurant table, laughing and dining with friends, or until I can travel and visit loved ones, until I am immersed in life again.
“It won’t be long now,” I say to myself over and over, until I run out of breath. It’s so close, I can feel it, and I swear I can see it too.
Say what you want, call it imagination or complete delusion, but I got a glimpse of the future yesterday, and it was beautiful, and real.
A winter storm hit Texas last Thursday and it’s unlike anything I’ve ever seen. Temperatures have plummeted to historic lows, numbers of which are unheard of in my hot and humid neck of the woods. With over 4 million Texans suffering through power outages, my access to wifi and central heating feels like winning the lottery. I’m living every moment as if it’s my last with power and electricity because frankly, it very well could be.
I’ve spent the past three days huddled by electrical outlets while consuming alarming amounts of hot tea, mentally prepping for my next meal and its alternative, if need be. Classes are canceled, as is physical therapy, so I’ve been stuck at home like everyone else, racking my brain for ways to make the most out of this unexpected holiday.
There’s an odd feeling of familiarity within this situation, a sense that I’ve done this all before. And in a way, I have. Not with frosty terrain and winter weather warnings, but with an illness that made me housebound and a pandemic with lockdowns of its own. I’ve learned how to tolerate isolation, how to cope and even thrive within its catalog of restrictions, and at this point, I’ve become a seasoned hermit, a skill that’s boded me well this past year.
I find it almost amusing how POTS is no longer what’s keeping me inside these days. Now, it’s a historic snow storm, covid-19, and online classes that keep me locked up for days at a time. As I continue to recover and heal from chronic illness, there’s no “regular life” I can return to, no normalcy I can acclimate myself with or strive to finally attain. I know I said it’s “almost amusing,” but the longer I remain isolated, the words ‘frustrating’ and ‘lonely’ also come to mind.
Often, I joke that POTS prepared me for the pandemic, with all those days spent chained to the couch doubling as a weird bootcamp of sorts. I joke that I had a sixth month head-start on all my peers, building up the endurance required for a year of quarantine and isolation. And while it is true that POTS taught me how to be patient and nurture hope, covid-19 made my small world even smaller, and the limited contact I had with friends become even more scarce and constrained. These days, when I get cabin fever, it’s nearly unbearable; it’s as if I’ve been isolating in double time.
Picture of the snowfall from my walk yesterday, which was brisk in every way.
Spending most of my time at home, in a space that is comfortable and tailored for my body’s needs, it’s easy to find the outside world increasingly more overwhelming with its loud noises, busy freeways, bad drivers, and precariousness. At home, my meds and salty snacks are right where I left them, and anything I might possibly need is always within reach. I can pace myself easily, rest whenever needed, and I never have to worry about pushing my body beyond its limits. I feel safe at home, comfortable at home, and yet I can’t help but worry all this time in isolation is only prolonging and delaying my integration back into the “real world.”
I have to admit I’ve grown a little scared of the “real world.” When I developed POTS, I also developed an anxiety more acute than I’ve ever known. Once a daredevil child who flipped off diving boards without second thoughts, I’m now easily frazzled by things as simple as the local grocery store at peak hour. Small changes in my routine are enough to send me spinning, and while I used to consider myself a social butterfly, I now find myself sweating when I have to respond in the group chat. POTS has implanted a fear that runs deep within me, and now I can’t help but constantly anticipate the next flare or episode or trip to the emergency room. I can’t help but hate POTS for that, and all the other ways it’s altered me to my core.
I’m discovering recovery is as much of a mental endeavor as it is a physical one. It’s as if I’m having to rewire my brain, training it to trust my body and self again. Living with a nervous system that’s chronically hyperactive, I have to constantly coax myself out of “fight or flight” mode. Every day, I try to convince my body there’s no danger it needs to brace for.
As dispiriting as it can be to recover within isolation, it’s been a relief to watch the outside world slow down alongside me. Now, the world pulses in a rhythm much closer to my own, and it’s allowed me to take my time as I trudge through the gnarly work of healing. Now, I’m not the only one opting for another night in, becoming more and more socially awkward as the many days go by. Though I wouldn’t exactly call my situation “ideal,” I know it could be worse in an abundance of ways.
This time at home has allowed me to recuperate at my own speed, removing the temptation to “keep up” with everyone around me. It’s let me gradually ease myself back into a life that has deadlines and structure, while also giving me ample time to read and write–two things that sustain me. Because covid-19 has forced most universities to shift online, I’ve even returned to school as a full-time student, which happened sooner than I expected. As tired as I am of isolation, it’s provided me with a unique opportunity to focus on my recovery.
I know, eventually, there will be an end to all of this hermitting. The snow will melt, the pandemic will subside, and classes will be held in person again. I’d like to think there will be a day where I’ll forget how it felt to be this isolated. But until then, I’ll continue to make the most of all this time alone. (Which right now, if I’m honest, means watching Ted Lasso every night.)
May the power, WiFi, and central heating be with you,
Yesterday was September 24th. I woke up, took my meds, ate breakfast and started on school work. It was a typical, ordinary day for me, filled with online classes, PT exercises, and journaling in my spare time. I’ve gotten used to both working at home and my dysfunctional body, and I’m settling into the “new normal” I once swore I would never obtain.
But this time last year, September 24th was anything but ordinary. It was a hard day that was chillingly easy, the day I moved out of my college apartment and officially withdrew from the university of my dreams.
I look back on this day with a stabbing pain inside my heart. A year ago, I was riding in a car packed to the brim with my fragmented life. Suitcases were arranged like Tetris in the trunk, stuffed with outfits I’d never wear for memories I’d never make, along with college spirit gear I suddenly had no use for. I was headed towards home, where I’d wait on referrals that were months away, wondering what would become of me while I wandered into unchartered darkness.
A year ago, my mother was overseas when I called, when I sputtered out the words, “met with my advisor”, “decided it’s best”, and “I can’t do this anymore”. I felt the words crawl through the phone, heard them plop out the other end, rippling across the vast Atlantic Ocean. Instead of catching a flight to Nice as planned, she booked a last-minute trip to Nashville instead, cutting her well-needed vacation short in order to help her debilitated daughter move out. She should’ve been walking along pebbled beaches in Southern France, catching up with longtime friends, but instead bore the brunt work of loading up my CR-V.
A year ago, my roommates surprised me with a dinner party. It was really a goodbye party, the only one I’ve ever had, and maybe I’m biased but it was also the best, filled with joy and laughter amidst our heavy sorrow. It hadn’t set in quite yet, that I would really be leaving–for now, for forever, for who knew how long. Up until this point, I was too focused on survival, how to make it to the next moment, to the step, to the next seemingly impossible breath.
Picture from said dinner party. 503 girls forever <3
A year ago, I turned in my keys to the RA. For five weeks, that little dorm room was mine, filled with symptoms and sleep and phone calls to my mother. I watched as the RA quickly closed the door, feeling the rattle of the doorframe reverberate in my bones. She took the keys, turning the lock, and as she did, I heard a small knocking, coming from a piece of myself stuck behind that door forever.
A year ago, I stood in the kitchen of that apartment, fidgeting, stalling, doing anything to stretch out time. My roommates and I looked at each other from across the table, daring one another to be the person who said it first–that one word, those two syllables. “Goodbye”. “Good-bye”. If it weren’t for my condition, I could’ve stood there until the end of time, suspended in the last moment of my old life.
A year ago, I left a university I adored. I abandoned plans, hopes, dreams, versions of myself I never got to become. The frightening truth is how easy it was, how easy it is to leave when you’re left with no other choice. With a sturdy composure, I gave a final wave to my roommates, shutting the car door, saying softly to my mother, “maybe this is what it takes for me to finally get better”.
My roommates saw someone brave, calm, and collected that day, saw their friend facing the unimaginable with an emotional armor made of steel. But the truth is, that armor was fleeting; when the spotlight turned off and the audience went home, my epic costume unraveled, leaving me bare, naked, and entirely defenseless.
These days, I’m so focused on moving forward with my recovery that the act of looking back feels unbearable and draining. My healing still seems fragile, as if one wrong step will shatter all the precious progress I’ve made. I worry that if I’m not careful and wander too far into the past, I’ll get lost there forever, reverting back into my crippled state, becoming frozen in moments I worked so hard to get out of.
It’s been a year since that day and so much has happened since then. I feel like a different person now; stronger, sturdier, more sane from the rest that was long overdue. But in my weakest moments, I transport right back into that apartment, where the sorrow and pain were acute and so raw, where I’m still the girl who’s terrified of what her life has become.
I don’t have any words for that version of myself. No advice, words of wisdom, or genuine encouragement. If I could, all I would do is wrap my arms around her; tightly, like a promise, never letting her go.
Don’t know this reference? Why, that would be the one-and-only, iconic line from legendary crowd-pleaser and my personal childhood favorite, High School Musical: A Disney Channel Original Movie.
Gif of High School Musical cast jumping in graduation gowns.
Still confused? Well, I started my fall semester this week and the mild first day of school vibes on Monday had me rising a thick blue wave of nostalgia. High School Musical was a childhood staple of mine, and I walked into every school year secretly wishing it might reach the grand expectations set from the revered Disney trilogy. I never did get the tasteful cafeteria flash mob I was after (although I was a participant in multiple zombie flash mobs for my theatre department’s Halloween fundraiser. Not exactly the same thing…), or the angsty teenage romance with Zac Efron I’ve been wanting for years, but that’s never dulled my love for the iconic High School Musical movie. Or Zac Efron. Let’s be real.
Monday was easily the weirdest first day of school I’ve ever had, and if you would’ve told me nine months ago I would be beginning my sophomore year of college entirely online in the midst of a pandemic while battling POTS, I wouldn’t have believed you. Partly because there was a part of me that was truly terrified I’d never be well enough to return to school, but also partly because a pandemic? Really? No way. (Yes way, unfortunately.)
As I mentioned above, all of my classes are online this semester due to COVID-19, so the first day of school felt anticlimactic to say the least. Logging into an online seminar in the quiet of my childhood home doesn’t quite have the same effect that walking into a crowded, chatty classroom filled with new students and old friends does. As far as kickoffs for a new school year goes, this was easily the most underwhelming.
When I close my eyes, I can still remember my many ‘first days’ of elementary school. I can still smell the new Expo markers, the freshly sharpened pencils, the melting pot of scents that was the school cafeteria at lunchtime. I can still taste the Goldfish and fruit snacks that were tenderly tucked into my lunchbox, can still feel the peanut butter sandwiches on soft white bread glued to the roof of my mouth. Still, I can faintly hear the dull fog horn of the school bells, the squeals of children on the recess grounds, the rattling clatter of pencil boxes before they got worn and broken from careless use. These memories fill me with a heavy sense of warmth, and they’re the equivalent of a blanket wrapping around me on a winter night.
In these memories, I was fully healthy and able. In these memories, I ran around playgrounds and the school gym, dashing to and fro choir, orchestra, and theatre rehearsals, comfortably on my feet. Minus my senior year of high school, my time spent in primary and secondary school are mercifully untouched by chronic illness. I had not yet been knocked down by the beast that its POTS, had not yet been held back, reduced, or broken. I miss these memories more than I ever thought possible.
It’s both distressing and a relief that my life wasn’t always this way, that I didn’t always live with symptoms of some sort, with daily fatigue and discouraging limitations. These memories fill me with both grief and gratitude, with both joy and heavy sorrow. In this week’s wave of nostalgia, I find myself aching to go back for a day, for an hour, for a brisk minute in my body from before. I never thought I would ever say this, but I actually wish I could go back to public school once more, merely to bask in the ordinary that wasn’t ordinary at all.
In a way, these memories feel like a gift from my past self, an offering of respite I can return to as I move forward. These days, I find myself searching for the past in my future, trying to catch a glimpse in my reality of a life where I’m fully able and free. These memories are like a baseline I am trying to get back to, and also a reminder of how good and simple life can be.
It’s been a year since I’ve been in school, and a lot has happened since then. I’ve gotten diagnosed, I’ve spent nine months in a physical therapy program, and I’ve traveled into the crevices within me that are deep and dark and roughly jagged. Enrolling in school again, even if only online, feels like a triumphant switch from full-time patient to part-time, and it’s exciting to see a life, my life, finally building upon the rubble.
But alongside this excitement is a heavy grief of all I’ve lost. In these trying days, I know I’m not the only one who feels robbed of the college experience I wanted or planned for. I know I’m not the only one who mourns over the life changes that rippled ruthlessly through the masses this year. To those of you crying hot, angry tears over the changed plans you still can’t stomach, know that I’m crying with you. To those of you working your hardest to salvage what’s left of your school year, know that I see you and I understand. To those of you who can’t help feeling robbed or cheated of the year they worked so hard for, know that I am here, fuming right beside you.
In the wise words from High School Musical: “We’re all in this together”.
Gif of High School Musical cast dancing to finale song, “We’re All In This Together”
It started with a viral illness. Maybe it was from the mono during my senior year of high school that I never really felt better from, or maybe it was the upper respiratory infection that landed me in the emergency room during my freshman year of college, fainting on a Friday morning. Which one was the initial onset, it is difficult to tell, but for the past three years of my young adult life, I have battled daily, chronic fatigue, followed by dizziness, heart palpitations, chronic pain, and more. The first two years of this time was spent denying, ignoring, and wishing my illness away, until about a year ago when it exploded all over my life, forcing me to rebuild atop the wreckage. I was dragged into the chronic illness world kicking, screaming, spitting out every obscenity I know, and like so many others, it was a world I never planned on visiting, or getting to know so well.
The first time the name “POTS” would ever be spoken to me would be in May of 2019, in the middle of a lengthy diagnosis journey. I’d been waiting on referrals for rheumatology and sleep neurology, terrified, impatient, and exasperated at how much of my worsening condition was still unknown. At the time, “POTS” was only a story about a friend of my brother, the diagnosis of a swimmer who’d battled headaches and vomited when she stood for long periods of time. In the retelling of her experience, I listened as the words “can’t stand”, “throws up”, “horrible headache”, and “no cure” poked through the narrative, striking details of a burden I couldn’t fully understand. “POTS” was still a cluster of cooking containers to me, the thing you use to heat food on the stove and the dish that’s a pain to clean. It was just a random acronym, a group of bold letters that had no significance in my life. Or so I thought. I was unaware at this point that “POTS” was in fact the name of the illness running rampant beneath my skin; the name of a chronic condition that would soon take more and more from me; the diagnosis I’d receive by the end of the long year. I remember blocking out her story, thinking my doctors would surely figure out what was wrong with me, but three months later, I would walk out of their offices empty handed, my heart dragging behind me on the ragged, grey pavement.
The next time I’d hear the name “POTS” would be in my internist’s office that August, three months following the story of my brother’s swimmer friend. It was during a follow-up appointment to regroup and address my unnamed illness when she threw out that vaguely familiar name. She stated “POTS” was essentially the only likely condition we had yet to test for, a condition that affects the autonomic nervous system and is characterized by high heart rate and fatigue. It’s known to occur in young women, and considering my heart was pounding away at 110 bpm just sitting on her table, my persistent, prevalent symptoms were enough to enquire. She wrote a referral to an electrophysiologist, wished me good luck, and I walked out the office, clutching her doctor’s note like it was my last and only hope. At that point, it was.
I went home and googled, my heart fluttering as I read symptoms that outlined the past year of my life. Heart palpitations, fatigue, fainting or near fainting, lightheadedness, tremors, shaking and nausea. There were GI issues, headaches, brain fog, and muscle aches. Temperature deregulation, vision changes, fast, rapid heart rate; almost everything under the sun and almost everything I’d experienced. That day I felt something I hadn’t felt in months. A tickle in my gut, an internal spark, an igniting of hope that had almost burnt out. The path forward was narrowing, a horizon finally breaking in the distance, and I wondered if walking down this road, if following this referral might finally lead me onwards and through.
I didn’t know that despite the right direction, the road would still be bumpy, plagued with heartbreak and loss. I didn’t know the road would still be a lengthy one, that although I was closer to a diagnosis than I’d ever been before, I was still three months away from sitting in the office of a doctor who could finally, actually help me. I didn’t know what was to come, I only hoped it would bring answers.
I received the referral in August, after an entire summer of medical testing, but school was set to start by the end of the month. In my mind, the summer I had just spent as a professional patient, completing three sleep studies, countless blood draws, an EEG, and a CT and MRI of my brain should’ve brought the answers I was looking for. I should’ve been going back to school with a diagnosis, with everything tied up in a nice, neat bow, figured out just in time to protect my precious plans. But the new patient appointment with the electrophysiologist wouldn’t be until October, halfway through the semester. Would I stay home from school to continue my quest for a diagnosis? Or would I continue it in an entirely other state and try to get a referral there?
I made the decision to return to school in the meantime, thinking I could either wait at home twiddling my thumbs, or I could wait at school, with homework and friends to keep me busy. Looking back, this was a bit of a mad decision, considering my body was far from well and crushing fatigue was constant, but with no diagnosis, I felt I didn’t have a concrete reason not to return. Plus, I didn’t want the unnamed illness to disrupt my life more than it already had. I’d pushed through with this unknown condition long enough, couldn’t I push through just a little longer?
I made adjustments to my schedule, leaving a demanding but beloved major. It was a hard decision but I knew it was best for my health at the time. I’d shorten the amount of hours I’d take that semester, nixing any physically demanding classes, and I’d let all my teachers know I was dealing with ongoing health issues. My doctor was kind enough to write a note, officially asking for assignment and attendance flexibility, and although I didn’t know if I could make it through the semester, I knew I wanted to try. I’d go to school while waiting for autonomic testing, praying my optimism would protect me from failing. I clutched my hope like it was a metal shield, hiding behind its sturdy support, but soon I would learn no amount of hoping could salvage the unraveling of my old life. It couldn’t save me from the pain, and it couldn’t reverse what was already in motion; nothing could. My illness would ultimately consume my life, and there was nothing I could do about it.
I lasted five weeks into the semester. In those five weeks, I never once completed a full week of classes. I crashed in bed at four in the afternoon, listening to my roommates come and go, off to parties and rehearsals, meeting up with friends. Lying on my bed, I’d watch the sun set every evening, alone, scared, and feeling so tired I could hardly move. Three weeks in, I visited my doctor in town, trying to get a referral to a local dysautonomia clinic, but it took six weeks to even schedule an appointment. By the fifth week of school, I ended up in the emergency room yet again, due to a 170 bpm heart rate while walking around my apartment. With my illness spiraling out of control once more, and after years of pushing and pushing my body to keep up, something inside me gave out, snapped, decided it had had enough. I wouldn’t be finishing the semester, and I wouldn’t find some way to miraculously soldier on. I would be going home, waiting on referrals in my hometown, leaving pieces of myself on the college campus I adored; pieces of myself that would never be mine again.
View of the sunset from my dorm room bed.
My apartment was five minutes away from a world-renowned dysautonomia clinic. I was a young, debilitated college student desperate for medical treatment, unable to walk to classes because my heart rate got so high. My internist in town did all that he could, sending letters to the clinic, his nurses calling every morning, but the clinic simply couldn’t squeeze me into their packed, rigid schedule. They were booked six months out, into the next year. And how would squeezing me in be fair to other patients who had waited the long six months for help? The demand for autonomic testing in America is so high, dysautonomia clinics across the country are swamped. There are not enough doctors or time in the day to see all the people who need to be seen, or to help all of the people who need to be helped. I was a person of many who needed to see an autonomic specialist, who was living with a quality of life similar to patients with congestive heart failure. The reality was, I could no longer take care of myself, could no longer cook or shower, and my illness was consuming me with each passing day. I withdrew from college, said my goodbye to my family of friends, and then I went home, and I waited. Help from doctors was months away.
The waiting was the hardest part. I watched my world become smaller and smaller, independence and freedom swirling down the drain as my mother washed my hair. Simple walks around the neighborhood became increasingly more depleting, and life became an activity I watched through a downstairs window. The sun would rise and fall, the birds would come and go. The neighbors’s cars pulled in and out of driveways, going places, doing things. I was no longer a participant in the world; all I could do was observe.
Although my body kept me breathing and woke me up for each new day, I wasn’t living, I was surviving. I waited for doctor appointments as my friends carried on at college, sending their love while their lives continued, essentially unchanged. They would continue to grow in school, continue to learn and deepen relationships, continue to live the college life that was swiftly taken from me. These were the days where movies were a life raft, floating me to the next hour; if it weren’t for the television, I would’ve drowned in my fatigue.
After two months of being out of school, I finally met the right doctor. It had been two months of meaningless tv shows, two months of writing angry entries in my journal, two months of avoiding music and reminders of the beloved life I lost. Two months of sitting at the park, two months of lying on the couch with a heating pad, two months of hardly telling anyone where I was, that I had left school, that I was back home and depressed. By the time I finally saw the right doctor, it would be another month until I’d be able to be tested. A month of more television, a month of more angry journal entries, a month of feeling increasingly more trapped inside my home, inside my body, inside a reality that I never imagined would happen to me. It was a reality I wanted a gift receipt for, some way to be refunded for the wild, energetic, young adult years I lost.
Journal entry from 12/13/2019.
In mid-December of 2019, after a grueling tilt table test preceded by three various autonomic function assessments, I was finally diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, and it was no longer just a group of cookware or a sickness that only happened to someone else; it was now the name of the health condition that had assigned itself to me. This form of dysautonomia makes it difficult to walk or stand, as the dysfunctional nervous system struggles to regulate heart rate and blood pressure when the body is upright. Although it is a benign condition, it can be incredibly debilitating, triggered by simple things such as a hot shower, a warm day, even from eating a moderate or large sized meal. A diagnosis opened up a whole new world for me, one I still didn’t particularly want to be a part of, but a world that had access to help; I walked out of that doctor’s office with pamphlets, referrals to a physical therapy clinic and a dietician, and now I had a relationship with a doctor who validated and understood my condition. From the very beginning, I never wanted a diagnosis, but that day, the year-old ball of angst that had cemented in my gut dissipated because finally, I had answers.
The treatment for POTS takes an individualized approach, as no two patients are the same. This syndrome can have varying degrees of debilitation, along with a vast assortment of symptoms and causes, so naturally, treatment varies per the individual. However, care for POTS often consists of increasing salt and fluid intake, modified, consistent exercise programs, various lifestyle changes, and a mixture of medications to help lower heart rate and raise blood pressure (typical medications are beta-blockers, vasoconstrictors, stimulants, and more). There is no cure for POTS so treatment is aimed at managing symptoms, and prognosis typically depends on the age of the patient and the cause of the disease. Because my doctor believes I contracted POTS as a result of a viral illness, my prognosis looks quite good, and it’s predicted I should see relief in a few years’ time.
Because so many people have not heard of POTS (including many doctors…yikes!), they assume my condition is rare and that my experience with a viral illness does not happen to people often. I wish this was the case. I wish there weren’t so many people in the world that understood my tale of pain and the struggle of POTS so well. It is estimated up to three million people in America alone are suffering from this disease, though it is likely more, considering how often the condition is misdiagnosed and how difficult it is to get access to the correct doctors and medical testing. While not all three million of these people developed POTS as a post-viral condition (there are several other causes such as EDS, autoimmune conditions, and pregnancy to name a few), that is a staggering amount of people living with this chronic disease. I just came down with a virus, the same way you’d catch a cold. It wasn’t a rare, freak event. It can happen to anybody, and it happened to me.
One viral illness. That’s all it took to transform my life. These days, I struggle to process the lasting impact of a single infection. The fact that it’s led me to over seven doctors in the span of a year. The way it has shifted, stalled, and shattered my life, my ideal college career, and plans I had for the future. Often, I think back to stomach bugs in my childhood and the typical colds and rounds of flu I’ve battled throughout my adolescent years, baffled at the way I was able to recover from them so quickly, unscarred and whole again within the course of a week. Back at school the next week. Now I live a life where time moves slow and fatigue comes fast and standing in the shower is a victory to be celebrated. Now I am faced with the daunting task of rebuilding an entire life, starting from the very beginning: teaching my body how to walk again.
The medical condition I have makes it hard to stand or walk for moderate to long periods of time. When I do, my blood pressure drops, my heart begins to race, and my nervous system begins its fight against gravity, battling the force that always wants to pull me down. But despite it all, I get up. I take my medicine, I swallow my salt tablets, I go to physical therapy. Despite it all, I’m still standing, even though there were many days in this health journey I was convinced I’d never see the end of. The ones that felt like even when the clock struck midnight, they would find a way to go on forever. I’m still standing, even when my body doesn’t want to; when my muscles ache, my head is foggy, and my dysfunctional nervous system would rather I lie in bed all day. Despite it all, I’m still standing. Maybe not better than I ever did, like the famous Elton John song goes, but standing, nevertheless.
Thank you to Dysautonomia International for the informative pictures, expending consistent effort to raise awareness for POTS and other forms of dysautonomia, and the resources it provides for those affected.
