Yesterday, a worker at Whole Foods caught my eye. It wasn’t so much that I was attracted to him except yeah, probably a little. It was more so that I was attracted to what he was doing: standing outside the store’s entrance, sanitizing grocery carts and noting how many customers walked through the doors.
Fascinating, isn’t it? Just enthralling, right?
Kidding, though only partly because I actually was intrigued.
I was intrigued because as he leaned against the wall, drumming his fingers on the beige concrete, I was peering out my car window, thinking of all I would give to trade places with him.
He probably didn’t know his job is a challenge for someone like me. He was probably unaware that while he was standing in the sun with ease, I was watching from afar, boiling with raging envy. Frankly, he probably takes his whole gig for granted, and for that, I really can’t blame him.
I know with absolute certainty my old self would’ve done the same. Without even closing my eyes, I can see 17-year old me leaning against that wall, checking my phone periodically, willing the time to move faster. Years ago, I was unaware that standing is a privilege, that it could and would be stolen for me, over and over again. My old self took it all for granted too, each and every day, and to that I say, of course she did. She didn’t know how much she could lose.
Even so, in my envious state, I’m convinced if it were me in that job, I’d cherish every minute of it. My yearning persuades me that for the rest of my life, the art of standing will never be lost on me; that every successful hour on my feet will feel victorious, euphoric even. I know I’m being generous, and eventually the novelty of standing will wear off. But staring at that Whole Foods worker on a warm Friday afternoon, I felt assured that what to him is probably considered mundane, will forever feel miraculous to me.
It is worth noting my stop at Whole Foods took place following a physical therapy session, so POTS was certainly heavy on the brain. But it always is, that’s nothing new. POTS is with me wherever I go.
I’m aware, all things considered, that I could do that job, right now, if I wanted to. I’d need a stool, maybe a fan, but I could do it. And that would be okay, to need a stool or other accommodations, except that I don’t want a stool. I want to stand in the sun in front of Whole Foods, greeting people for hours until everyone went home. And I want to feel well, up on my feet, without the dizziness and high heart rate that usually ensues. And I want to leave that shift without feeling utterly exhausted, and I want to wake up the next day and do it all over again.
I want to do that job and I want it to be easy. I want to feel so well, sanitizing those carts, that I dare to bravely deem myself bored. I want to feel so normal, standing there in the glorious sun, that for the first in a long time, I take it all for granted too.
If I were more brave and cared less of what others think, I would tell people these things. I would walk up to them and scream into their face, “Don’t you know how lucky you are?” In my daydreams, I do.
But in real life, I sit inside my car, nursing my longing, swallowing my rage. I fiddle with the radio, tuning out words I never say, waiting for my mother to eventually return with the groceries.
She does, puts them in the trunk, I put the car in drive. I hear the click of her seatbelt next to me, and then, we drive away.
If you passed me on the street, you’d probably think I was a normal 20 year old girl. Well, actually, you’d probably think I was a normal 16, 17, 18 year old girl because I’m short and little and have a young face. (I get mistaken for 14 year old more than I’d care to admit…) Either way, if you saw me on the street, you would assume I was like all the other young adults you know: immature, maybe a little irresponsible or reckless, but nonetheless, fully healthy and able-bodied.
You wouldn’t know I had a disability that makes walking a challenge. You wouldn’t know that I can’t stand in showers, eat large meals, or that it takes an average of three hours every morning before my body tolerates gravity. You wouldn’t see me in an hour’s time, stretched out on the couch because outings wear me out. You probably wouldn’t even know about POTS and to that I’d say, “lucky you.”
But even if you knew I had a disability, you might still be confused because my disability doesn’t look the way you’d expect it to. I don’t have crutches or a wheelchair to symbolize my limitations (although some people with POTS do use wheelchairs), and I can walk to some extent, as long as I’m not in the middle of a flare. However, my ability to walk is limited and fleeting, and all it takes is a big lunch, a rough night of sleep, or ten minutes too many in the bright, hot sun before this privilege is taken from me. In this way, POTS is a series of losses over and over and over again.
Graphic of what different types of disabilities can look like, created by StandingUpToPOTS.
Living with an invisible illness often feels like living a double life. With clean clothes and a full face of makeup, I can pass as a vibrant, abled young person, and on a good day, I feel like one too. But makeup or no makeup, POTS is with me wherever I go. There’s no universal sick or disabled “look”. POTS can look like anyone; POTS looks like me.
Sometimes I feel grateful that my illness is invisible. It gives me the freedom to pretend, the ability to delude others into thinking I’m as well and able as them. Other times, it feels burdensome, like a dark, twisted secret, and I find myself tempted to tape an “OUT OF ORDER” sign to my front, craving some kind of tangible way to make my illness visible, validated, and seen.
Graphics created by StandingUpToPOTS, explaining the chronic, invisible nature of POTS.
Before my diagnosis, I struggled a lot with the discreet nature of POTS. It was so discreet in fact, even my doctors couldn’t see it. It took over a year of sorting through patterns of symptoms before I landed in the right doctor’s office with at last, the right diagnosis. The subjectiveness of POTS symptoms (such as dizziness, fatigue, and nausea to name a few…) perpetuates the disease’s misunderstood nature and frequent misdiagnosis; for over a year, I battled against thoughts of, “what if it’s all in my head?” and, “what if they don’t believe me?”
But for an illness that is invisible, POTS physically manifests in many ways. It looks like salt tablets and medication bottles and stacks of broth in the pantry. It looks like compression stockings, electrolyte tablets, sitting on curbs and nearby benches. It looks like liters and liters of water, fit-bits and heart rate monitors, even the towering stack of journals in my bedroom. POTS isn’t as noticeable as crutches or a wheel chair, but it’s evident if you know what you’re looking for.
Picture of various medical devices and foods that help manage POTS
Picture of myself
What POTS looks like vs. What POTS looks like
Despite this subtle visibility, I often I feel like I divide my time between two separate identities; one that’s neat, energetic and socially acceptable, and one that’s hidden, drained, weary, and spent. There’s the raw, gnarly side of me that only my couch and immediate family see, typically at the beginning and end of my day, and then there’s the presentable part reserved for strangers, friends, and brand new acquaintances. When I’m all dolled up, I look as healthy and able as anyone. But at times, a face of makeup feels like a mask, my clean clothes a costume for someone more well than me.
Sometimes POTS makes me feel like Hannah Montana, although admittedly less like a rockstar and a little bit more like a fraud. Coming home from outings with friends, the bubbly, chatty version of myself slides off like a wig, falling away once I’m within the safe walls of my home. Shuffling to the couch, I begin to claim my second self, feeling my personality abandon me as my body hits the worn out leather. During that swift moment of transformation, I’ll wonder which persona is closer to the truth, and how much of my character is merely an act.
Picture of Hannah Montana, a character on a television show that was popular on Disney Channel.
Not many people see this version of myself. They see the side of me that’s well enough to attend the party, the outing, the lunch with friends. Coming home to this drained part of myself often feels like coming home to a festering secret, and for a while, these identities felt separate and conflicting. I was convinced that the existence of one identity completely invalidated the other, that I couldn’t be the bubbly person I’ve always known myself to be and the depleted girl I’m left with once my illness takes the reigns. But the longer I navigate life with POTS, the more I understand that they are connected, that I am both. And with time, I have learned that I’m not the only one that lives this way. That all of us carry struggles that are camouflaged within.
We all harbor some kind of hardship. We all inhibit this Earth with pain that’s cloaked, covered, and concealed.
I used to think my invisible illness made me less-than everyone else, but really, if anything, it’s made me more like everyone else.
Big thank you to StandingUpToPOTS for creating the helpful graphics used in today’s blog and for expending consistent effort to raise awareness about POTS.
With it being the beginning of Dysautonomia awareness month and having had a pretty rough flare this weekend, POTS has been on my mind a lot lately. (Or at least more than usual, I should say.)
Because of this, I found myself knee-deep in a big, fat, snotty sob session this afternoon. It was as if the pitch-black rain cloud that’s been steadily building overhead parted, dropping bucketloads of rainfall on parched, crunchy land. It was the kind of cry that feels like a workout, that drains you but leaves you feeling lighter. Emptier too.
I cried because as much as I preach about hope, I still can’t believe this happened to me.
I cried because as proud as I am of my resilience, I’m exhausted of hearing the words “you are so strong”.
I cried because POTS is a lot to manage and tears are just the inevitable outcome of living with a disabling, chronic condition.
I cried because I don’t know what it’s like to go to college without ER visits and doctor’s appointments and dizzily wandering through hospital corridors alone.
I cried because some people get mono and get over it. Because they’re not on their third year of chronic illness, trudging through thick mud and grief on the twisty road towards recovery.
I cried because chronic illness is too much to deal with, and it’s lonely and isolating and even after all this time, scary.
I cried because if it weren’t for POTS, I would still be a music student, learning vocal scales for school, growing, refining, and polishing my craft.
I cried because progress is still so hard, even when there are people who congratulate and applaud you.
I cried because sometimes moving forward feels like a curse, because I have to bring all of this brokenness with me–this dysfunctional body that’s been through hell with its muscle twitches and tremors and dizziness and fatigue.
I cried because even though I’m doing better, recovery is still so tough.
I cried because on a bad day like today, POTS feels simply impossible to live with.
Today I also cried for everyone else who knows the pain of POTS. Who knows its physical, emotional, and spiritual toll, who’s participating in Dysautonomia awareness month right alongside me.
I cried for everyone who came down with one little virus and spent years of their life trying to recover.
I cried for everyone who’s left jobs, careers, schools and universities in order to prioritize their health.
I cried for everyone who’s sacrificed dreams, plans, and social events in order to tend to and cope with their illness.
I cried for everyone who’s ever had to choose between seeing a friend and taking a shower, who’s suffered through flares in dark rooms, alone.
Mostly, I cried for everyone who knows how much one single virus can change a life forever.
I don’t share this blog post as a way of seeking attention or praise. I share it because in order to truly raise awareness about a misunderstood disease, I must first be transparent about the reality millions of people face around the globe.
Chronic illness ain’t easy. It’s about as fun as it sounds. And I am a big believer in the power of positivity as well as the steel-like strength of unbreakable hope, but that doesn’t change the fact that chronic illness is a beast. A gruesome monster I, along with millions of others, never asked to meet yet live with day after day after day after day.
If you’ve ever battled the bullies disguised as disease, know that I understand. That I rage and cry with you, and for you.
I know how much of a warrior you are, and let me be frank–that’s not a term I use lightly.
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”
Healing is harder than I thought it would be. Don’t get me wrong, when I first received my POTS diagnosis, I understood I was at the beginning of a long, windy road to recovery, one filled with bumps and detours and a tedious chain of obstacles. I knew this process would take time, patience, and an unspeakable amount of grit, that it would be far from easy and incredibly grueling. But I guess I unconsciously assumed that once I began feeling physically better, the rest of my troubles would wither away. I assumed that my biggest struggles were solely physical, so once my health improved, I’d be ‘all better again’. Lately, I am learning, this couldn’t be farther from the truth.
Up until a few weeks ago, I held a narrow notion of healing, one that revolved around a peace and mending of the body and mind, characterized by a centeredness and calmness while involving a hefty amount of therapy, meditation, and organic green juice. And while there is some truth to all of this, I’m learning that healing looks and feels different for each individual person, that it’s just as psychological as it is physical. Healing can be a long, snotty cry in your room, the act of doing something you’re scared to do, or giving yourself permission to feel emotions you’ve ignored or pushed away. Healing can be spending time with friends, feeling the warm breeze against your skin, or it can be the making of hard sacrifices, putting your health first yet again for what feels like the millionth time.
There is a part of me that was surprised to find that the process of healing is incredibly messy. In fact, for a while, I assumed I must be doing it wrong, as if there is any “right” or universal way to heal. I approached my recovery the same way I approach life, with an impulsive need to embody perfection. I wanted my uphill battle to be brisk and linear, free of any detours, slips of the foot, delays or distractions. I wanted my worst days to live behind me, to stay behind me and for good, and I wanted to catapult myself into wholeness and good health. When I first got diagnosed that warm December day, I wished to slingshot myself froward, to find some magical remote that would fast forward me to the good part, to the part where I’m all better again.
A gif of an Angry Bird being launched by a slingshot.
It’s easy to be mislead from the reality of healing when the process is sounded by words like “journey” and “inner peace” (not to mention the fact that these terms are almost always used alongside sparkle, heart, and star emojis). These misconceptions are reinforced when outsiders only see half of the picture, when insight comes in the form of staged photos of victories and celebrations and not the day in day out trudge that encapsulates chronic illness. Let this be your daily reminder that there’s always more to someone’s story than the snapshot you see. In the words of my favorite quote, “You never know what people have to go home to. Be kind.”
Over the recent months, I’ve learned that even as my health improves, feeling physically better is only an aspect of the healing process. The damage chronic illness does to the psyche runs deep, and it takes time to process the loss, events, and emotions that come along with getting sick. When I was at my worst, I didn’t even have the energy to form opinions on what I was experiencing (other than “this f*@*$&! sucks”…) because I was too busy trying to stay strong and salvage the scraps that were my life. Now that I’m doing better, all of these unfelt emotions are waiting for me, as if I’ve returned from a disastrous vacation to find my home infested with roaches.
As complicated as these unprocessed emotions can be, at the worst of it, my illness had a way of simplifying my life; when my energy was scarce, my priorities were clear. Meanwhile, my symptoms acted as a form of guidance, managing my schedule and dictating my days. Feeling tired? Rest. In pain? Lie down. Dizzy and nauseous? Head to the couch. The more constant these symptoms became, the more I got used to feeling that way. Being unwell became my new normal, and at some points, it was simply expected. Now that I have more energy, it’s almost an unusual sensation as for the past three years of my young adult life, I’ve been crippled by chronic fatigue. At times, it now feels like I’m traveling without a roadmap, or that I’ve acquired a lucky lottery ticket but don’t want to spend my loot too soon.
A picture of Homer Simpson, carrying the roadmap I wish I had.
The switch towards learning to live with my symptoms was, in a way, just as hard as being succumbed to them. Instead of surrendering, I had to pick up my sword and muster the courage to fight again. Integrating myself back into “normal” life is definitely harder than I want it to be, and it feels as if I’m walking into an unbearably bright summer day after spending sixth months in a cold, dark movie theatre. It’s reasonable to assume my eyes need some time to adjust to the light. After all, I’ve spent quite a bit of time fumbling around in the darkness.
The more energy that has returned and the less intense my symptoms become, the more possibilities there are on how to spend my days. With this newfound possibility comes a plethora of unknowns, and sometimes all the uncertainty can be frankly overwhelming. What will I do next with my life? Am I spending this energy wisely? Productively? As fully as I can? Will I do something meaningful with my improved health? Make something purposeful of this pain? The pressure to know these answers is heavy, and sometimes I struggle under the weight. The more progress I see in my recovery, the more pressure I put on myself to have my life all figured out.
Healing is hard. It’s harder than I thought it would be. It’s harder than I wanted it to be, and sometimes it’s harder than what I think I can manage. The good news is, I’ve made it through all my worst days so far (with an impeccable track record, may I add…). The bad news is, I’ve still got a ways to go with discomfort, difficulties, and unprocessed grief waving at me from a distance. I’m bound to catch up with them soon, and sometimes that tempts me to swerve off the recovery road, driving far away from the inevitable without ever once looking back. But other times like today, where I had a lovely morning at the pool, floating in the water and looking up at a clear blue sky, I think to myself “Look at how far you’ve come” feeling oh so lucky to be here, floating and alive.
There’s no denying that healing is hard, hard work. But some days, it’s beautiful too.
The other day, I hit 4500 steps. While this may not seem like a big deal to some, this is a huge accomplishment for me! For the past eight months, I have been slowly inching my way up to this number, so to finally hit my goal not only felt like a step in the right direction (pun absolutely intended), but a testament to my recovery and healing progress.
It’s been difficult to get these steps in during the summer because it is simply too hot outside, so I’ve taken after my dog and started pacing around the house. Every hour like clockwork, I get up to log my steps for the day, and oddly enough, with the COVID-19 stay at home orders/recommendations, my home has turned into a bootcamp of sorts. By the time everything opens up again and it’s safe to fully return, I’ll be entering the world with the strength to participate, resigning from my role of observer. Big cheers to that!
Why was my goal 4500 steps? Well, research suggests that women see health benefits beginning at 4400 steps a day (I did an extra 100 steps because I am an overachiever and memorized the wrong number…). To me, this number symbolized not only improvements in my physical strength and symptoms, but also represented a progression back to good health in general. I am on my way to becoming a fully abled, healthy human again and man, it feels good!
To put this all in perspective, eight months ago, I was averaging 800 steps a day. I couldn’t stand for longer than 6 minutes, I struggled climbing stairs, and many days, a simple walk to the bathroom was all that I could manage. The road forward has been daunting and painfully slow to say the least, but I’m so grateful for my team of doctors, physical therapists, psychotherapist and dietician for quite literally helping me get back on my feet.
To celebrate reaching this goal, yesterday I threw on my baking cap and whipped up a batch of ‘POTS brownies’ (minus the marijuana…). I found this gluten-free, dairy-free, and refined sugar-free recipe on TikTok and can confirm from personal experience that it is absolutely delicious! I will copy and paste the recipe and share it with you all down below.
Pictures of me with said POTS brownies. As for the unsightly numbers made out of powdered sugar, all I can say is that I tried my best…at least they tasted good!
Recipe:
1/2 mashed banana
1/2 avocado
1 egg
4 tablespoons of maple syrup
1/4 cup of cocoa powder
1/2 teaspoon of baking soda
Bake in oven for 15-20 minutes at 350 degrees, then devour and enjoy!!!!
I was asked this question once, a little over a year ago. I was standing on stage at the time, shaking from a mix of nervousness and malaise. Not only did I feel unprepared for the musical theatre final exam performance I was about to give to my professors, but I realized I was unprepared to answer a question as loaded as this one.
When I received this question, I had spent the previous five weeks juggling classes with doctor’s appointments and an assortment of debilitating symptoms, and the thought of opening my mouth and singing Italian arias seemed like an impossible request. I was still waiting on referrals that were over a month away, constantly calling doctor’s offices to check on waitlists and possible openings while also recovering from an unexpected trip to the ER. Most people in my circle of friends and professors knew I was battling health issues, but none of them understood the full extent of that struggle. It felt as if I had a front-row seat to the unraveling of my old life but at the time, I seemed to be the only one who knew it was ending.
Those six words and their question mark peered over me like a magnifying glass. Standing on stage atop the small blue X, I imagined myself shrinking to the size of an ant, scurrying in circles under the collective gaze of my inquiring, well-meaning professors.
It felt as if I had a front-row seat to the unraveling of my old life but at the time, I seemed to be the only one who knew it was ending.”
My mind went into overdrive as the minion operating my brain scrambled through crumbling towers of hurt. How would I reveal there was an unnamed, invisible illness running rampant beneath my skin? How would I disclose that my lack of a diagnosis meant a lack of adequate treatment and a lack of adequate treatment meant a progression of my already debilitating symptoms? How would I explain that underneath my fancy dress and full face of makeup, I had never felt more unwell, that the short walk to that auditorium was a disabling excursion that would wipe me out for the rest of the day?
Under the bright yellow light inside the auditorium, I struggled to find the words that would fully illustrate my predicament. As I stalled and stammered, the bright lights appeared to close in on me like a tight, unmoving spotlight, and I half wished I’d look up to see it coming from a search helicopter overhead, arriving just in time to rescue me from the suffocating situation.
The panicked minion operating my mind.
I didn’t know how to tell my professors that I wasn’t “all better now”, that I wouldn’t be for quite a while, and that I was at the beginning of a diagnosis journey I was terrified to embark on. And even if I did somehow manage to find the words, would they even believe me? I stood before them in a full face of makeup plus heels and curled hair and a formal, flattering dress. I looked like all the other well, abled college students, resembling an attractive, healthy version of myself when really, it all felt like an extravagant costume. The attire that really suited me was back in my dorm, a crinkled mess of smelly sweatpants and a sweater, paired with a heating pad and my laptop for yet another evening in bed.
The rest of this memory is fuzzy now, and I can’t quite remember how exactly I replied. I’m almost certain I said something polite and gentle, probably adding a tasteful, weak laugh to mask my surprise and exasperation. I can tell you with full certainty that I didn’t say what I truly wanted to say, which would’ve been something along the lines of, “THIS IS THE WORST POSSIBLE QUESTION YOU COULD ASK SOMEONE WITH DEBILITATING, ONGOING HEALTH ISSUES!” I can tell you with unwavering confidence that I responded in a way that I always felt I had to: too kind, too polite, sacrificing my comfort for someone else’s.
Now, I have to give credit to the professor who asked me this question. They didn’t know what was wrong with me, and frankly, neither did I. My illness was still undiagnosed and also invisible, so only I truly knew the intensity of my symptoms. But from the very first appointment with my internist, I understood finding a name and explanation for my wide assortment of symptoms would be a long, tedious process. Referrals, I learned, took time, as does waiting for insurance approval and tracking said symptoms, and searching for a diagnosis can be a long, brutal game of ruling everything else out.
Eight months after receiving this question, I finally was diagnosed with Postural Orthostatic Tachycardia Syndrome (also called ‘POTS’). For those of you who don’t know, POTS is a dysfunction of the autonomic nervous system that is characterized by rapid heart rate, dizziness, and fatigue among other symptoms whenever the body is upright. Thanks to a grueling tilt-table test, at last I could put a name to what I was experiencing; to say I was relieved is an understatement.
Because there is no cure for POTS, treatment consists of managing symptoms. This is typically done through medication, physical therapy, and increased salt and fluids, however one of the challenges to POTS is there is no “POTS Pill”. Because the autonomic nervous system controls the entire body, this can lead to the need for various MD specialists as well as individualized treatment, due to the fact that this condition affects every patient differently. Will I be stuck with symptoms forever? It’s hard to say, but my neurologist is hopeful I’ll recover in two years (this depends on the cause of POTS – for some people, POTS is a lifelong battle, but prognoses are general estimate anyways). So after these two years, will I be free from POTS forever, never to have another symptom or flare again? I truly don’t have an answer to that, but that sounds like a dream come true.
It’s certainly daunting to be diagnosed with a chronic illness (especially when you’re young!! But that’s a blog post for another day…). It sounds like a hellish promise (“curse” is fitting too) that one will feel horrible every day, all of the time, for as long as they shall live. The reality is, there are good days and bad days, and on average, I land somewhere in the middle. In other words, I’m a frequent flier between the land of well and unwell.
Image of an airplane.
That being said, I have yet to have a day that was entirely symptom-free since developing POTS a rough two years ago. Symptoms still constantly interrupt my life, and even though I’ve learned how to integrate these limitations and restraints, I’m far from liberated by this debilitating illness.
But despite the frequency of my many, many symptoms (lol), the intensity has lessoned recently. Thanks to my doctors, physical therapy, and my magical dietician, I can tolerate much more activity than I could just a few months ago, and I have gained back quite a bit of freedom and independence. (Last week I drove myself to and fro my physical therapy session, which in total is over an hour of driving AND I worked out for an hour AND I stopped for lunch AND I took the long way home!! Major win!). These past few months have been much kinder and bearable for me, and oddly enough, in this time of better days, I’ve found myself asking that same loaded question.
“So are you all better now?”
Because I am doing better, there is a part of me that assumes I have to be “all better now”. That I can’t ever step backwards, that I can’t still be sad about getting sick, that I must be happy and grateful about all my progress and achievements. And in a way, it makes a lot of sense. Why wouldn’t I be happy about not feeling as sick as I used to? That alone is reason to celebrate! But the reality is, I’m still processing all I’ve been through. The reality is, I’m still not where I’d like to be. The reality is, I still feel sad that I have POTS. Still totally enraged. Still utterly in shock.
Even as I recover physically from POTS, there are hurdles in my mind that I’m continuously tripping over. There is a fear that follows me everywhere I go of what symptoms might arise, what activity might spark a flare, or what new episode might take over my body. This loss of control is still terrifying to me, and this disabling fear lurks in the background of my life like a camouflaged predator I can never outrun.
I’m doing better, but I’m not “all better now”. I hope one day I might be, but for now, I take it day by day. Healing from chronic illness often feels like a daily dance of baby footsteps; sometimes forwards, sometimes back, sometimes it’s merely a side shuffle, but the key is to just keep moving. These steps can feel discouraging when everyone else is whizzing past in a smooth, effortless waltz, but I choose to keep dancing with the hope that one day, all these baby footsteps might take me to that hazy horizon of healing, to that final, epic finish line of recovery, and to the top of this mountain where I can look down and say “I made it. I actually finally made it”.
Music is medicine for me. It’s been one of my biggest joys since I was four years old, and so many of my childhood memories took place around a piano, practicing for recitals, jamming with my grandfather, or exploring the keys and creating melodies of my own. For eighteen years, music was a constant source of light in my life. In elementary school, I counted the minutes until music class. In middle school, I divided my time between orchestra, choir, and rehearsals for the school musical. High school was one, giant blur of voice lessons and musical theatre soundtracks as I drove to and from various musical theatre rehearsals. My home was wherever music was and that was perfectly fine by me. It was absolutely ideal, actually.
In 2018, after twenty three college auditions for musical theatre programs across the country, I landed at a small liberal arts college in Nashville, Tennessee. Known for its acclaimed music school and connections in the country music industry, I spent my freshman year of college with “I can’t believe this is my life” moments, pinching myself as I jumped from practice room to practice room, my days full of voice lessons, piano lessons, choir rehearsals, and more. But my freshman year was also filled with symptoms. And as the months went on, I watched an unnamed illness pull me away from the life I’d always dreamed about and worked tirelessly to build. When my illness forced me to withdraw from school at the beginning of my sophomore semester, I returned to my childhood home exhausted and angry and unable to stomach all I’d lost.
For three months, I blocked music out of my life. Car rides became silent except for the dull humming of the engine. Showers were no longer a place for song but a chamber of symptoms I dreaded entering. I traded my guitar for a pen, swapping out songwriting for journaling as I let words fill the rapidly growing, empty void inside me. In this time, I discovered how much I loved writing, one of the few creative acts I could still manage in my limited condition, but I also realized my deep love for music simply wasn’t going anywhere. It wouldn’t conveniently go away because I was no longer a music student. In fact, my love for music was alive more than ever before, but it was an unfamiliar, unbearable ache that was far too tender to touch.
My illness shook up my life like an earthquake and as it did, the inseparable relationship I had with music shattered. That constant source of joy and strength I depended on throughout my childhood slipped through the cracks of the broken life I was left with. As I trudged through the dark, uncharted terrain of the medical world, I needed music more than ever, but anytime I turned on a song and tried to sing along, I was reminded of how much I had loved and lost. Music eased my pain while also adding to it, and for a while, it was simply easier to shut it out of my life completely.
And yet, there were songs I came back to again and again throughout my journey with POTS. Songs that nursed me back to health, songs I clung to like a life raft in the raging ocean of illness. Songs I have compiled into a playlist, and want to share with you.
Click on the title of the song to have a listen.
Keep Breathing by Ingrid Michaelson is a very special song to me. As my illness progressed during my freshman year of college, I remember lying in my bed, scared out of my mind, listening to this song on repeat until I fell asleep. I didn’t know what was wrong with my body or how I’d muster up the strength to walk to classes the following morning, but this song held my hand, tugging me through the rest of the seemingly never-ending semester one breath at a time.
Wild Horses by Birdy is what I call my “fight song”. I play it whenever I need some strength or extra encouragement to help me get through a tough day. My favorite line is in the chorus, and it goes, “I will survive and be the one who’s stronger”. It reminds of the resilience I’ve gained from POTS and pushes me to keep trudging forward.
Good to Be Alone by Theo Katzman is a song my best friend Hannah introduced to me. She kindly made a playlist for me a few months ago and this was my favorite song from it by far. During the time I spent unwell at home while my friends were off at school, I felt incredibly disconnected and isolated from the rest of the world. This song made me feel more comfortable about being alone while simultaneously reminding me of my best friend. I love the line, “However hard I hit the gas/the engine don’t run half as fast/as it once did” because it reminds me of the struggle of adjusting to my body’s new limitations.
The Eye by Brandi Carlile was a huge source of peace for me. I like the line, “You can dance in a hurricane/But only if you’re standing in the eye” because I feel as though it gives me permission to appreciate the joy and small breaks of delight that are scattered amidst the daily struggles of chronic illness. There’s peace within the eye of a hurricane, and sometimes it provides a brief moment of rest to survive the next wave.
War of My Life by John Mayer is another fight song for me. It helps me trudge forward and gives me strength when I’m freshly out of stock. I love the line, “Got no choice but to fight till it’s done”, because that encapsulates the reality of battling illness. While I certainly never chose this struggle, all I can do is find a way to keep moving forward. Really, that’s always felt like the only option I had.
I Guess I’ll Just Lie Here by Noah Reid. The title says it all. I throw on this song whenever I’m having a flare and am not able to be as active as I would like. The slow, somber acoustics usually match my mood on these types of days…
Re:Stacks by Bon Iver is almost the opposite of #6. The acoustic guitar is so sweet and calming to me, and has quickly become one of my favorite songs of all time. I throw it on if I’m ever overstimulated, as I find it soothing to my overactive nervous system, and the line, “Everything that happens is from now on” in the beginning really speaks to me because of all the ways I feel my illness has changed me. My life will be forever different from having POTS, and this line helps me accept that truth. All in all, this song is just so beautiful to me.
Whatever You Do by Brandi Carlile. If I had to pick one song to sum up POTS, this one might be it. The lyric, “I’ve never met a morning I could get through” at the beginning of the second verse means so much to me because mornings are usually the hardest part of my day. It is such a struggle to get my body vertical and functioning after a night of being horizontal and dehydrated, and I physically can’t just “hop out of bed” anymore. The line in the chorus that goes, “There’s a road left behind me that I’d rather not speak of/And a hard one ahead of me too” always felt so relevant to me, encapsulating the struggle of being roped into a long, painful journey and feeling forcefully stuck in the present because both the past and future are too daunting to think about. There are so many memories from ER visits and doctor appointments that I wish I could forget, and sometimes it’s unnerving to look ahead and see such a long, tedious journey to recovery. This song always found me when I felt stuck in the middle of it all, swimming in weariness and overwhelmed by my reality, and I found strength in the following chorus lyric that goes, “But I’ve got a life to live, too”. I always heard it as “But I’ve got a life to live to”, and it reminded me of what I’m fighting for and why I keep forging ahead on the hard road ahead of me.
Be Where You Are by Birdtalker is hands-down the most comforting song I know. The amount of peace this song brought me throughout the ups and downs of my chronic illness is immeasurable, and I’m convinced I wouldn’t have been able to get through this past year without it. “Be Where You Are” is a blueprint for how to get through hard times and I highly suggest carving out four minutes of your day to give it a listen.
Dog Days by Maggie Rogers. The pre-chorus of this song is so powerful to me. The lyrics go, “And if you had a bad week/just let me touch your cheek/Oh, and I’ll be there waiting/when you get frustrated/I know things are changing/But darling, I’m saying/I’ll be singing you in all of my songs”. These lyrics are so personal, and this song always made me feel like Maggie was singing directly to me, like somehow she knew exactly what I was going through. Through her music, Maggie become almost like a friend to me, rooting me on and encouraging me whenever I needed it the most.
You’ve Got A Friend by Carole King is a song I always popped on when my friends seemed so far away. As I mentioned above, illness can be incredibly isolating and I spent so much of my free time during my freshman year at college alone in my dorm room, exhausted in bed. This song got me through some of my loneliest moments, and made it feel like someone was there with me, holding my hand and guiding me forward.
In the Meantime by Jess Ray is another song that brought me comfort (noticing a trend yet?) throughout my experience with chronic illness. The chorus really stuck to me, and it goes, “And in time/I’ll let you in on everything I’m planning/When it’s time/I’ll let you see everything you’re asking me”. It ends with, “But I’m gonna satisfy/Everything in the meantime”. When I couldn’t make sense of the rapid, unwanted change that flooded my life, this song untangled the knot of worries in my mind. When it felt like I was free falling into pitch black, rock bottom, this song held me, cushioning my descent like a parachute.
Farther Along by Josh Garrels is one of the best feel-good songs I know. I play this song on my happy days, and I love the main lyric, “Farther along we’ll know all about it/Farther along we’ll understand why”. It reminds me to take the sunny days whenever they come, and to worry less about trying to figure everything out. This song is a big breath of fresh air and almost always manages to put a smile on my face.
Until I Die by Brandi Carlile. Another Brandi Carlile…okay, you got me! I’m a big fan! Her music is just so good and her lyrics always seem to resonate with me. The line at the end of the chorus that goes, “I made my mind/To live until I die” reminds me of when I was at my worst, thinking about all I wish I had done before I became so physically limited. I remember being driven past a tennis court thinking, “Why have I never played tennis before?? When I was fit and healthy and perfectly able?!” Developing a chronic illness has certainly shifted my perspective in an infinite number of ways, and it has pushed me to savor ordinary, small joys that I used to take for granted. Also, mark my word, I will learn to play tennis one day!
Back in my Body by Maggie Rogers. I’m going to end this list with another song from my girl Maggie. In a body that can feel stolen by chronic illness, it is a miraculous victory when old pieces of myself peek out through all the symptoms. I like to play this song in those precious moments where I feel like the Alli I’ve always known again, and celebrate the times I finally feel back in my body. The line “This time I know I’m fighting/This time I know I’m back in my body” always encourages me to keep fighting for as many of these treasured moments as possible.
I listen to music much more often these days and sing whenever I get the chance. My relationship with music has certainly changed because of all I’ve been through, but I have learned that no matter what, in some way, music will always be a part of my life. Singing and listening to music has become a large part of my healing process, and these songs restore me in a way no medication could; they are food for a ravenous soul and a bandaid for a battered spirit.
I’ve spent the past two days on the couch. Not by choice, but because of some testing one of my doctors ordered a few months back and I’ve had to come off my medication for it (which I’ve been absolutely dreading, hence the procrastination). Coming off medication is as much of a mental challenge as it is a physical struggle, and it’s definitely been a cruel blow to the bubble of peace my meds have graciously provided for me over the recent months. If anything, this testing has shown me the amount of freedom my meds give me, and in my hazy, symptomatic state, I’m convinced I will never take them for granted again.
I figured what better time to finally complete this testing than during a pandemic with loads to watch on my Netflix cue, but in all transparency, there’s never a good time to voluntarily subject to feeling unwell. I’ve done a lot of medical testing these past few years. Labs, scans, EEGs, autonomic functionality, the list goes on. I’ve spent a lot of this time, too much of this time really, feeling everything far from well, so I do everything in my power to prevent flares and symptoms, and more testing than what’s absolutely necessary. But sometimes these situations are unavoidable. Sometimes there’s testing that really must be done, so my only option is to hold on tight and brave the looming, incoming waves. Like I mentioned above, so much of chronic illness is a mental challenge as much as it is a physical struggle. POTS has certainly been the mental battle of a lifetime.
On a weirder note, my mom and dad drove downtown yesterday to pick up another sterile lab jug for me to urinate in. That’s true love (and also really gross, sorry!) and I don’t know how I’d survive POTS without them, frankly. Their love is a source of great strength for me, a deep reservoir I tap into often.
Coming off my meds for testing has been humbling to say the least, and I’ve gained valuble perspective on how much progress I’ve made in recent months. Last week, I went on a short walk in 90 degree Texas heat and was averaging around 4000 steps a day. I’ve been able to go swimming, walk through the grocery store (masked, of course), and I’ve begun an online class at a local community college, which has been enjoyable to give energy to. My medication regimen and physical therapy program are helping me claim my life back, but it’s a slow, lengthy marathon that happens gradually overtime. This type of progress can be harder to notice on a typical, day-to-day basis, so sometimes situations that put a jolt to my system (like this testing and weekend on the couch) remind me just how much better I am feeling these days. What a major victory!
But yesterday I didn’t feel quite so victorious. Yesterday it was a struggle just to walk to the bathroom. This can be the reality of chronic illness, the way it flows in and out of your life like an unwanted guest, ignoring rent payments and courteous roommate formality. It often loiters in the background before jumping out in fullforce, seizing days at a time and stealing pieces of you in its brisk, crippling stride. It’s a cruel, constant tug-of-war battle that I never agreed to play, but here I am holding on, grasping the weathered rope until my boney knuckles turn white.
I laid on this couch all day as people moved around me, going places, doing things. They had an actual day. They were free to roam wherever they chose, while I stayed still, cemented to this couch. I’ve gotten so used to this stillness, so used to the sitting out, that this worn out couch and I are almost buddies, a partnered, package deal. I kept wondering when I bumped paths with the world-renowned Cleopatra, wondering what kind of curse I encountered that damned me to this time of statue. Somewhere deep within me, I could hear my spirit whimper; held hostage within this body, it was chained entirely against my will.
That used to be my every day life for months and what a sad thought that is. Yesterday, I passed through that flare as a visitor, knowing no matter how bad it may get, I could resume my medications tomorrow. But that did little to calm the rattling of my bones, scarred and shaken from the days they have lived through. I truly don’t know how I got through that time, no matter how much I reflect or ponder. During those early, pre-diagnosis days, I don’t quite know what pulled me through the next moment, to the next morning, to the next month. Maybe it was my parents or that tiny glimmer of hope, but more often than not, my “strength” people commend me about seemed gone in all capacity. At the lowest points, on the darkest days, strength was nowhere to be found. Strength, I have learned, is more of a byproduct from pain, a callous on the soul that’s located deep within.
Even there, in that flare, there was progress. Immense progress. There was fear but there was knowledge, a trust and comfort in what I’ve learned about my body, about this disease, about how to get through hard days like those. It’s Monday, I am medicated, and I am already feeling better. But this morning I woke to a sweet surprise before I even swallowed my pills. The worst was over, the day was new, and I had survived the gnarly waves.
