Tag: POTS Page 2 of 3

Champion Park

On January 16, 2021

Last week, I had an annual check up with my internist. She reviewed my yearly blood work before conducting a brief physical, doing what primary care physicians typically do during regular, scheduled check-ups. In retrospect, there was nothing to be nervous about, as the appointment was just for checking in, nothing new. But three hours beforehand, I felt that familiar fear creep out of hiding, the one that’s painfully festered throughout these past two years.

I seem to remember almost enjoying going to the doctor’s as a child. With their impressive supply of stickers, it was kind of hard not to. But I think it was because there was some element of it all that always felt like a field trip of sorts. I was never a regular there, at least not yet; I was simply a visitor who showed up once, maybe twice a year, mostly to confirm that I was still completely healthy.

In those days, there was no ailment I brought in that the doctor couldn’t quickly fix or understand. My pediatrician was for strep throat and flu shots, and I hadn’t yet traveled into the realm of Western medicine that isn’t designed for complicated chronic issues. In those days, I hadn’t yet developed finger tremors or muscle twitches that confused and puzzled my knowledgable doctors. I hadn’t yet felt the terror of staring down the long, dark road towards a diagnosis.

I miss that trust I used to have in my body, the trust that I’d swiftly recover from whatever came my way. I miss having ailments that could be fixed with a simple round of antibiotics.

These days, the doctor’s office fills me with dread. I guess that’s just what happens when you’ve endured enough medical testing. Oftentimes, I’ll try to reason my way out of the panic, telling myself things are better now, that I’ve survived the hardest part. Even so, my logic typically fails me; the memories are still too strong.

By now, I’ve learned to stop fighting against these feelings. With the help of my therapist, I’ve practiced letting them come and letting them go, giving them the space they need to arrive, as they inevitably will. It’s another exercise of surrender, a releasing of the illusion more commonly known as “control.”

On the car ride there, I felt the awaited dread rise within me. I tried to tune it out with my calm meditation music, but the two clashed in a minor key; the dissonance was striking. The dread felt thick and aggressive, like waves from a raging sea, and the salty water filled up my car, all the way to the brim. With shaky hands and a shaky breath, I tried my hardest not to drown.

When I arrived, I took a deep breath before stepping out of my car. I straightened my denim jacket as if it were my armor. Alone and scarcely armed, I walked through the automatic doors.

I arrived at the office, found a chair, filled out forms. Before I knew it, I was standing on a scale, then sitting in the exam room with a blood pressure cuff wrapped tightly around my arm.

It wasn’t long before my internist walked into the room, carrying a warmth that neutralized some of the chill from that afternoon. After a round of small talk, she reviewed my blood work and declared I’m essentially “a healthy young woman, with POTS”. My shoulders relaxed a centimeter.

She stood up, began the physical exam, but not before commenting on my reusable liter water bottle–a staple accessory for anyone with POTS. “I never leave the house without it,” I joked. “You’re doing everything right,” she responded, with kindness and care.

Throughout the past year, I’ve learned how to take good care of myself, but still, that sentence filled me with relief. The invisible mountain of bricks on my back disintegrated, drifting to the floor like a cloud of dust. I took a deep breath, mostly because she told me to, in order to check my lung function, but it was partly involuntary too; for the first time in that examination room, I could breathe again.

My internist released me from the appointment with the remark, “no torture for you today.” She was referring to blood work and other medical testing, and though it was a joke, it rang true. With the feeling I’ve paid, if not surpassed, my medical dues, I collected my bag and gigantic water bottle. I let the door of the exam room shut swiftly behind me.

Walking out of that appointment, I nearly strutted down the hallway. I felt strong and resilient, as if I’d just slayed a thousand dragons. I think, in a way, I did. With shoulders squared and a head held high, I relished in my quiet victory.

Climbing back into my car, I took a moment to regroup. Even on a good day, that office is disorienting, with or without new covid-19 protocols.

My internist’s office is the place where a doctor first spoke the name “POTS” to me. It’s the place I’ve returned to again and again throughout this journey, each appointment a major checkpoint along the way. My internist is also the doctor who coordinates all of my care, and though this seems like it would provide a sense of structure and stability, in reality, I’ve found it does the opposite.

Because POTS affects my nervous system and because the nervous system controls, well, pretty much everything, my collective symptoms of heart palpitations, dizziness, GI distress, and more, each require specialists of their own. It takes a village to treat POTS, from neurologists to cardiologists to gastroenterologists, allergists, and more, and my internist is typically the one writing the referrals, shipping me off to my many specialists. This contributes to a sense of disorienting, fragmented care, and I now see seven specialists to help manage my condition (not including my PTs, my therapist, and my dietician.)

That office holds so many different versions of myself, and each time I return, it’s like bumping into all of them at once. They fill the stuffy waiting room, taking up space in the chairs next to me. It’s almost as if they’re all frozen in time, suspended in their silent suffering. I want to reach out to them, lock eyes, hold their hand.

There’s the 18 year old who was struggling to recover from mono; the tired musical theatre performer wondering why she’s tired all the time; the scared college student that sensed something was wrong; the exasperated full-time patient who was desperate for a diagnosis; there’s the freshly diagnosed college drop-out, fumbling around in the dark. And then there was me: the one who’s found her footing, who made it to 2021 somehow.

It’s a lot to walk into, and it’s a lot to leave behind.

I wish I could tell each of those versions of myself that I have finally made it to the “maintenance stage.” That all the medical testing does in fact end, that she will find the answers she’s fighting for and learn to live in the unlivable. I wanted them to know there’s a part of the story where it really does all get better, that I’m in it now, the falling action, living in an ending she dreamed of but didn’t know how to reach.

In the driver’s seat, I attempted to collect my scattered thoughts, trying to settle into my new reality: the one where not all doctor’s appointments are traumatizing.

Putting the car in reverse, I drove to a nearby park where I celebrated with a short walk and sitting meditation. It’s a treat because I’m well enough to do this now, but also because anything is a celebration if you label it as one. I’m learning there’s a lot of power in that. Celebration is a powerful thing.

As I pulled into the parking lot, there was a boulder engraved with the name of the park. The sign read, “Champion Park.” I smiled to myself, chuckling a little, because it could not have been more fitting.

I am a champion, and I felt like one too.

In Another World

By howellsalli

On December 19, 2020

In Uncategorized

It was a Monday, I remember. Crisp and cool and cloudy. The gloomy sky casted a layer of darkness upon the house, but the clouds would later part to reveal a glorious winter day. Weather-wise, at least.

I started my morning with peanut butter and banana oatmeal, a meal notorious for making my POTS worse. It’s because of the carbs and unexplainable food sensitivities, but a year ago, we didn’t know this yet. We only knew that it increased my symptoms and we wanted all my various symptoms present for testing that Monday afternoon. So, breakfast was planned accordingly.

The directions said to shower before the appointment, so naturally, I obeyed. Doctor’s orders. I threw on baggy clothes as per requested, and when I was done, I crawled to the living room couch, where I blocked out the world with a Netflix documentary. Well, I tried to anyway but quickly failed as my eyes kept searching for the clock.

At noon, I was scheduled for autonomic testing. A medical technician in a room worlds away would conduct four series of tests to observe my autonomic nervous system. These tests would measure my nervous system’s ability to regulate sweating, blood pressure, and heart rate, hooking me up to various wires while strapped down to a Frankenstein-like table. All the equipment scared me, no doubt, but to continue to live without answers scared me even more.

Eleven o’clock came quick and my mother shepherded me to the car. When I made it to the front seat, I reclined to a supine position, my body’s favorite position, and turned the AC down as low as it could possibly go. My mother, who needs a jacket during August in Texas, zipped up her jacket and endured. She’s selfless like that, and I’m forever grateful for it.

When I arrived at the neurologist’s office, I seemed to be the only one who was ready. A four month wait will do that to you, so I watched office staff hurry about from a cushioned chair in the waiting room. It’s funny really, waiting four months for a doctor’s appointment only to sit in a room designed for more waiting. That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.

I wasn’t necessarily hoping for a diagnosis, except at this point, I pretty much was. It was more so that I was tired of wasting away in the Land of the Unexplained. While waiting on referrals and medical testing that was apparently in high demand, my sporty build had left me as my unknown condition worsened. As my inability to tolerate daily life grew, I felt like a shell of my old self, a vibrant girl withering away. Once, while watching television, I looked down and couldn’t recognize my legs. The strength I’d built up from ten years of swimming had gradually waned away, and to my horror, my legs now resembled twigs.

Those days, I was always so close to breaking. One harsh gust of wind, and–snap.

Eventually, the nurse called me back, taking my vitals before wiring me up. When I stepped on the scale, I noticed I’d lost ten pounds and in a weird way, I felt almost relieved. It was strangely comforting knowing some of my loss could be documented, not only my loss of weight but of my vibrancy, strength, and energy too. The numbers would get written down, saved forever in my medical chart, serving as some kind of evidence that I was no longer all I used to be, that I had lost some of myself in this lengthy, cumbersome journey.

That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.

As the testing began, I felt thumping so strong it seemed to shake me. I chalked it up to likely footsteps of a busy nurse out in the hallway, but after several minutes I wondered whether the thumping was coming from somewhere within. My heart, it seemed, was revolting. Its pounding was almost painful.

Lying there on the medical table, I braced myself for what was to come. The autonomic testing would conclude with a tilt-table test, the most brutal test out of the four. From my supine position, the table would be raised to simulate standing, and over the span of ten minutes my heart rate, blood pressure, and symptoms would be recorded, unless, the technician explained, I fainted. If I fainted, the test would be stopped prematurely. I didn’t know which outcome to hope for.

Graphic explaining how Tilt-Table Tests are conducted.

For an average, healthy person, a tilt-table test is no big deal. Their body adjusts to the pull of gravity by constricting blood vessels in the legs, properly sending blood back to the brain with only a marginal increase in heart rate. For a person with POTS however, this test is borderline torture.

Not even a minute into the test, I began to struggle against gravity. Sweating, shaking, unable to breathe, I squirmed beneath the table’s restraints as each of my symptoms were recorded by the technician. I called them out, plainly, the way he asked me to. “Dizzy. Heart palpitations. Shortness of breath. Fatigue.” Later, I would learn, my heart rate was soaring at 150 bpm.

Strapped down to the table, there was nothing to hold onto. I had to find something internally instead, some invisible inner railing that would support me and the weight of that afternoon. As my heart hammered on, I began to translate each pulse; every beat of my heart was my body battling to keep me conscious and upright. For a moment, I felt thankful. I have never felt my body fight for me the way it did that day.

Around minute five, in a moment I can only describe as dreamlike, I looked out to the wall I was now facing, only it wasn’t a wall. It was a window. It had taken five minutes before I realized that in the raising of the tilt-table to a steep 70 degrees, I was now directly facing a giant, glorious window. Before me, there was a golden, shimmering tree, and its leaves shook in the strong wind like confetti for a celebration. For a brief second, it looked as if the leaves were waving at me. From the depths of rock bottom, I said a silent hello.

Staring at that gold tree, a sense of calm swept over me. In the cold, clammy doctor’s office, I found a trace of light and beauty. It was an unthinkable event, unnatural even. And for the rest of my life, I will never forget the way that tree muted my screaming heart. It gave me a minute of peace in a moment of hell and even still, a year later, trees everywhere do the same.

We were told the testing would take about two hours, but in the end, it was closer to four. Walking into that office, I had little left other than slivers of hope and sanity, but walking out, I carried pamphlets and at long last, a diagnosis. After two years of living in utter fear and confusion, I finally had a name to my bizarre collection of symptoms: Postural Orthostatic Tachycardia Syndrome.

Not only did my diagnosis give validation to my invisible illness, but with it came a plethora of resources that were essential in my recovery. I now had access to physical therapists, dietitians, school accommodations, and more. I also now had an explanation for when people asked me, “What’s wrong?” While for some, a diagnosis feels like the ending of a life, for me it was more like a beginning, a chance to one day live again.

This time last year, I was strapped down to a medical table with wires and electrodes glued to my skin. It was yet another diagnostic test that would be my last in a soul-sucking series, and I was scrambling to hold onto my sense of self within the exhaustion and medical machines. It’s been a year now of officially living with POTS and I’m delighted to report I’m doing much better now. When I think about how I feel towards my progress and recovery, “gratitude” doesn’t even begin to cover it; it is relief at a visceral level, an infinite stream of thank you thank you thank you.

A picture of me from October 2020, walking around Centennial Park.

Last Monday, I drove up to the pond near my house. I like to go there a lot and, well, look at trees… On my way there, I passed my neighbors who were collecting their mail at the mailbox. The two young girls, maybe six and eight years old, wore the kind of matching, neon jackets that only young children can pull off. They jumped up and down with glee, ecstatic about a simple errand shared with their mom. It was a moment that moved me to tears, but not in the way you’d think.

For a split second, I imagined them all grown up and strapped down to a medical table. Unable to hide my horror at the thought, tears poured down my cheeks as I (dangerously) unraveled behind the wheel. So clearly, I could see them hooked up to wires, awaiting a tilt-table test in all-consuming fear. I pictured their mom fidgeting out in the waiting room, wondering how she and her baby girl wound up in a neurologist’s office on a sunny Monday afternoon.

It’s possible those girls might get POTS one day, too. I hope to God they never do.

But if they do confront fates similar to mine, I would want them to know it gets better. It gets a whole lot better, even when it’s still hard. I would want them to know they’ll never believe how strong they will become, or how much joy can be found in the simplest, smallest things. I would want them to know this illness will change them in every possible way, and although they might resent that for a little while, eventually they’ll learn it also sets them free. More than anything, I’d want them to know about hope. How it saved my life and has the power to save theirs too.

If I could, I would tell all this to the version of myself strapped to that tilt-table, too. I’d kneel down to the side of that Frankenstein table, holding her hand through all she is about to endure.

In another world, I do.

Wanna Trade?

By howellsalli

On November 15, 2020

In Uncategorized

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.

What POTS Looks Like: Making the Invisible Visible

By howellsalli

On October 25, 2020

In Uncategorized

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

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.

A Year Ago

By howellsalli

On September 26, 2020

In Uncategorized

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.

We’re All In This Together

By howellsalli

On August 28, 2020

In Uncategorized

“What team?”

I hope you said wildcats.

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 Hard

By howellsalli

On August 23, 2020

In Uncategorized

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.

POTS Brownies

By howellsalli

On August 13, 2020

In POTS, Uncategorized

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!!!!

The Worst Possible Question

By howellsalli

On July 27, 2020

In Uncategorized

“So are you all better now?”

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.

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.

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”.

My POTS Playlist

By howellsalli

On July 16, 2020

In POTS, Uncategorized

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.

Much love from my ears to yours,

Alli

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