A blog about my experience with chronic illness and finding hope in the darkest days

Tag: college student

Begin Again

Hi blog. It’s been a little while.

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.

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.

Hermit Season

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,

Alli

A Year Ago

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.

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