The Unbreakable Hope

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

Tag: recovery

Swimming Lessons

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On June 21, 2021

In Uncategorized

Yesterday marked the last day of the 2021 Olympic Swimming Trials. My family and I have been watching it throughout the week, eager to turn on the tv and dive into a world we no longer inhabit. 

Swimming was a large part of my childhood but it was an even bigger part of my family. In fact, it’s how my family came to be: my parents met at a swim meet. My dad excelled on the high school swim team and my mother was born a water bug. Growing up, I watched her direct a swim lesson program, teach lessons to the neighbors at the local pool, coach on a club swim team, and even petition for a local natatorium. For my mother, water is a magnet and she can’t resist its pull.

My middle brother swam briefly before switching to basketball and my oldest brother competed nationally before going on to swim in college. I myself swam for ten years on club and summer league swim teams, but halfway through high school, I left to pursue musical theatre. Swimming was a rite of passage shared by every member of my family, and we each have our own unique relationship with the sport.

A picture of my dad and me at a swim meet.

Watching the Olympic Swimming Trials has brought me back to my swimming days, which could also be considered my pre-POTS days. They were the days of boundless energy, of two hour swim practices and the sweaty dry-land conditioning sessions that followed. They were the days of eating whatever I wanted, of killing time on deck with friends, of giggling underwater and fiddling with my goggles on the wall as my coach yells at me to keep swimming. I never loved swimming enough to commit to the sport the way others have–the way my oldest brother had–but there was enough love to look back fondly on the memories, which is what I’ve been doing a lot of lately. 

I’ve swam laps at the neighborhood pool twice this week, mostly to keep up my POTS treatment but also to pretend I am an Olympic swimmer (no shame). Swimming is actually great for POTS because it’s horizontal exercise. Plus, the pool water helps me get some sun without overheating. Major win! My olympic fantasy collapses after 100 meters in the pool however, when I come up gasping for air and realize how much distance lies between my daydreams and the swimmer I am now. 

In passing, I mentioned to my mom how I can’t wrap my head around the fact that at 15 years old, I swam an average of 7,000 yards at 2 hour swim practices, 5-6 times a week. Sometimes, I had swim practice twice a day. And although I was certainly ravenous and ready for a good night sleep afterwards, my tiredness was minuscule compared to the exhaustion I experience from POTS. 

“I took my abilities and accomplishments for granted,” I told my mom, whilst feeling compassion for my 15 year old self who couldn’t possibly understand. She didn’t know what she could lose, what she would lose in time, and the privileges she’d one day learn to live without. 

A picture of me diving into the pool for a relay.

The memories of what it’s like to be normal, to go to swim practice and stand in the shower and still have energy left over, flicker in my mind briefly before quickly fading away. They’re like a name I can’t remember but lives on the tip of my tongue, or like a person that looks familiar but whose face I can’t quite place. They are a sketch of my old life, a rough outline but nothing more. The memories are my childhood, the majority of my life, yet they are so hazy that I question whether or not they were a dream. 

Last Thursday, I stopped by the local tax office to pick up my permanent disability parking placards. They’re mostly for school, so that I can park in disability spots closer to classes and reduce my amount of walking across campus, but they’re also for flare days or gigantic, Texas-sized parking lots. It felt surreal to hold them in my hand and recognize they were prescribed for me, not for my grandpa or anyone else, but me: the same girl who swam two hour swim practices six times a week. Plus dry-land.

There’s no shame in a changing body or having disabilities and limitations. There’s no failure in using a disability parking placard or any other form of accommodations. Yet as I held the plastic placards on a steamy Texas afternoon, I wondered how many other people felt like I did: shocked to be acquiring these blue signs much sooner than expected. 

I thought of all the other POTS patients like me, who lived active, athletic childhoods before they were debilitated by chronic illness. Are their hearts also filled with grief for all they’ve lost? Are they too wandering around in their post-diagnosis life, dazed and confused and maybe even a little embarrassed, wondering where that little sporty kid went and if they’re ever coming back? 

Picture of me as a kid, standing behind the block before my race.

Thanks to a year and a half of physical therapy, these days I feel strong. I can go out dancing with friends, complete grocery shops with no problem, and spend over an hour in fitting rooms, trying on dress after dress after dress. In many ways, I feel the healthiest I’ve ever been, even if I do still have limitations. But feeling my strongest and most vibrant whilst picking up disability parking placards makes that whole experience even more confounding. 

In some ways, I wonder if my time as a swimmer equipped me for the challenges of chronic illness. Through swimming, I gained grit, endurance, and resilience. I learned how to keep pushing when the set got hard and my heart was pounding and all I wanted to do was quit and float in the middle of the pool. When the coach wrote a set on the board that looked entirely impossible, I understood nobody could finish practice for me, that I’d have to just keep swimming, no matter what. 

A Different Kind of “New Normal”

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On March 13, 2021

In Uncategorized

The sun sets and I journey upstairs to take a shower. I pull the shower head down, let it hang. I step into the tub, I sit. I didn’t used to shower this way; I used to stand and sing. Now, I sit in silence, listening to the water spray. It’s loud, louder than I remember. Everything seems loud these days. 

Sitting in the shower has become normal to me. Preferred, almost, but only because it doesn’t exhaust me the way standing in steam does. If I had it my way, I’d be belting in home-made saunas like I used to, but with POTS and a heat intolerance, I’ve learned to adapt. To my bewilderment, I’ve found myself in the midst of what most people call a “new normal.”

I’m not the only one grappling with a ‘new normal’ right now. The phrase is plastered all over the internet, dominating news headlines, and I’d go so far as to say it was one of the most-used expressions of 2020, outshined only by the words “Zoom” and “unprecedented.” Today, “new normal” is used in reference to the pandemic and the various ways our lifestyles have changed–from face masks to social distancing, to diligent disinfecting and more. But “new normal” isn’t a novel phrase, or reserved solely for this covid-19 era. It’s a phrase that’s also popular in the world of chronic illness and that I’ve come to know very well.

A photo of popular words used during the pandemic; image from John DeMont’s article, “The Plague of Pandemic Words”

In the months leading up to my diagnosis, I went on countless social media deep-dives. Plunging through hashtags of #POTS and #dysautonomia, I was desperate to find people in the same boat as me. I was hungry for advice from people who understood and were further along on the process than I was, with residency in what many call the “the other side.” I scrolled through post after post, my thumb turning numb, hearing variants of the same message: “You will find a new normal.” But would I?

At the time, these words meant very little to me. Without an official diagnosis or the resources for a way out, this advice felt flimsy, two-dimensional, like an aspiration forever out of reach. I could see its appeal: “new normal” comforts, encourages, heartens, and gives hope. It lives dependent on the promise of flexibility and versatility, reliant on the potential of resilience and grit. But as I stayed suspended in survival mode while I waited on a diagnosis, I couldn’t comprehend what it truly meant to move forward, or what that would look like, or if I would ever.   

I heard this phrase yet again while meeting my dietician. A woman who lives with a chronic illness herself, she spoke from personal experience, assuring me that I too would eventually “find my new normal.” She promised me that one day, I won’t think twice about what supplements to take, that I would slow down and adjust to my limitations as needed, eventually settling into a slower speed and rhythm of life. She swore to me that with time, my foreign reality would become familiar, and that my debilitating symptoms would lessen as I learned to manage my condition. My dietician had no doubt in my ability to grow and adapt, believing with a steel-like, heartwarming conviction that ultimately, I’d prevail. 

I was touched and a little amazed, though I confess I wasn’t truly convinced. I couldn’t yet fathom a future beyond my reality of crawling to the bathroom, or the sleepless nights due to unforgiving symptoms, or spending hours every morning trying to force my body upright. My future was still fuzzy to me, still too uncertain to discern, and it was distorted by my growing fear that I would never be well again. In February of 2020, a “new normal” seemed impossible to me, as likely as if you told me I’d been invited to brunch on the moon. 

Theoretical picture of me having brunch on the moon. Image from Smithsonian Magazine

In a sense, the prospect of a “new normal” also felt undesirable to me. I didn’t want my reality to become normal, I wanted a refund or a time-machine; some way to transport back to my old life. To achieve a “new normal,” I would first have to accept my state of affairs and at the time, that seemed like an unreasonable request. The thought of my 2020 reality becoming normal repulsed me; I didn’t want a “new normal,” I wanted my old normal, and stat.

But fortunately, my dietician was right. The thirty pills and supplements I take every day are now as integrated into my routine as is brushing my teeth each morning. If I close my eyes, my mug of chicken broth after breakfast is just a unique cup of coffee, and has become no more unusual that pouring myself a cup of tea. With time, I have learned how to maximize my energy, designing my days around my body’s needs, and I’ve managed to carve a life out of the confines of both my illness and covid-19.

To the same degree, I’ve grown “immune” to the oddity of face masks in public. It no longer seems unusual to visit with my grandparents on the driveway as opposed to inside their kitchen, and I’ve gotten used to swapping out hugs for hand-waving, even though I do miss the former. I’ve seen first-hand from my experience with chronic illness that humans carry a remarkable capacity to adapt, so it comes as no surprise to me how we have adjusted to pandemic life: conducting classes online, building collections of reusable face masks, and finding ways to carry on when the life we knew was halted. 

But even though I meet all the qualifications required for “new normal” status, if you asked me, I’d confess that my life still doesn’t feel normal. It’s more so that I have gotten used to its weirdness; nothing about healing from chronic illness in the middle of a pandemic feels normal to me. 

An all-time favorite writer of mine, Suleika Jaouad, is also familiar with the expression “new normal.” Having been diagnosed with leukemia at the grand old age of 22, she knows first-hand how illness can sever a life, interrupting what was and forever altering what’s to come. In her 2013 NPR interview, she confesses, “I don’t like the expression new normal because I think life doesn’t really go back to normal.” She revamps the phrase instead, rebranding it as “new different.”

I like the concept of “new different.” I like the way it allows for radical, necessary change, and I like the way it accepts the present as it is, without any comparisons to The Before. The phrase “new different” allows our lives to continue changing as they inevitably will, while shedding the facade that we can ever recreate the past. Unlike “new normal,” “new different” welcomes change, opening the door to more and more life.

A photo of my mom, who helps me embrace my “new different.”

Two days ago, I went on a walk to check the mail. It’s a short walk, not too far, but on my way back, I kept walking. Up the street and around the cul-de-sac, talking my time while crossing the deserted road. I kept walking because it felt good. I repeat: I was exercising upright and it felt good. It was a sensation that in my depths of my illness, I was certain I would never have again. 

It was liberating to have the choice to keep walking. To have the freedom to control the duration of my walk, instead of surrendering to symptoms that often make that choice for me. It was liberating to leave my limitations at home, to have a break from being chaperoned by relentless fatigue and dizziness. As I approached a stop sign, I thought to myself, “What an incredible moment this is.” I was acutely aware of how remarkable it was to be walking and well after everything my body’s been through. I felt strong and content, borderline euphoric. I felt like my old self again, only more grateful this time. 

Like many, I made plans that shattered and crumbled to ruins while my life and reality fundamentally transformed. Like many, I’ve had to adapt and adjust to conditions that at times, were frankly unimaginable. Like many, I’m wading knee-deep in an aftermath, discovering what it means to find a “new normal,” or “new different.”

As I recover, it’s tempting to try to resuscitate the life I lived and the person I was prior to developing POTS. But illness, like other hard things, have a way of changing you to your core. And the longer I trudge through the aftermath, the more apparent it’s become that I will never again be the girl I was from before I fell ill. And maybe that’s the whole point. Maybe the point is not to find a new normal, but to find a new different, over and over again.

Hermit Season

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On February 18, 2021

In Uncategorized

A winter storm hit Texas last Thursday and it’s unlike anything I’ve ever seen. Temperatures have plummeted to historic lows, numbers of which are unheard of in my hot and humid neck of the woods. With over 4 million Texans suffering through power outages, my access to wifi and central heating feels like winning the lottery. I’m living every moment as if it’s my last with power and electricity because frankly, it very well could be.

I’ve spent the past three days huddled by electrical outlets while consuming alarming amounts of hot tea, mentally prepping for my next meal and its alternative, if need be. Classes are canceled, as is physical therapy, so I’ve been stuck at home like everyone else, racking my brain for ways to make the most out of this unexpected holiday.

There’s an odd feeling of familiarity within this situation, a sense that I’ve done this all before. And in a way, I have. Not with frosty terrain and winter weather warnings, but with an illness that made me housebound and a pandemic with lockdowns of its own. I’ve learned how to tolerate isolation, how to cope and even thrive within its catalog of restrictions, and at this point, I’ve become a seasoned hermit, a skill that’s boded me well this past year.

I find it almost amusing how POTS is no longer what’s keeping me inside these days. Now, it’s a historic snow storm, covid-19, and online classes that keep me locked up for days at a time. As I continue to recover and heal from chronic illness, there’s no “regular life” I can return to, no normalcy I can acclimate myself with or strive to finally attain. I know I said it’s “almost amusing,” but the longer I remain isolated, the words ‘frustrating’ and ‘lonely’ also come to mind.

Often, I joke that POTS prepared me for the pandemic, with all those days spent chained to the couch doubling as a weird bootcamp of sorts. I joke that I had a sixth month head-start on all my peers, building up the endurance required for a year of quarantine and isolation. And while it is true that POTS taught me how to be patient and nurture hope, covid-19 made my small world even smaller, and the limited contact I had with friends become even more scarce and constrained. These days, when I get cabin fever, it’s nearly unbearable; it’s as if I’ve been isolating in double time.

Picture of the snowfall from my walk yesterday, which was brisk in every way.

Spending most of my time at home, in a space that is comfortable and tailored for my body’s needs, it’s easy to find the outside world increasingly more overwhelming with its loud noises, busy freeways, bad drivers, and precariousness. At home, my meds and salty snacks are right where I left them, and anything I might possibly need is always within reach. I can pace myself easily, rest whenever needed, and I never have to worry about pushing my body beyond its limits. I feel safe at home, comfortable at home, and yet I can’t help but worry all this time in isolation is only prolonging and delaying my integration back into the “real world.”

I have to admit I’ve grown a little scared of the “real world.” When I developed POTS, I also developed an anxiety more acute than I’ve ever known. Once a daredevil child who flipped off diving boards without second thoughts, I’m now easily frazzled by things as simple as the local grocery store at peak hour. Small changes in my routine are enough to send me spinning, and while I used to consider myself a social butterfly, I now find myself sweating when I have to respond in the group chat. POTS has implanted a fear that runs deep within me, and now I can’t help but constantly anticipate the next flare or episode or trip to the emergency room. I can’t help but hate POTS for that, and all the other ways it’s altered me to my core.

I’m discovering recovery is as much of a mental endeavor as it is a physical one. It’s as if I’m having to rewire my brain, training it to trust my body and self again. Living with a nervous system that’s chronically hyperactive, I have to constantly coax myself out of “fight or flight” mode. Every day, I try to convince my body there’s no danger it needs to brace for.

As dispiriting as it can be to recover within isolation, it’s been a relief to watch the outside world slow down alongside me. Now, the world pulses in a rhythm much closer to my own, and it’s allowed me to take my time as I trudge through the gnarly work of healing. Now, I’m not the only one opting for another night in, becoming more and more socially awkward as the many days go by. Though I wouldn’t exactly call my situation “ideal,” I know it could be worse in an abundance of ways.

This time at home has allowed me to recuperate at my own speed, removing the temptation to “keep up” with everyone around me. It’s let me gradually ease myself back into a life that has deadlines and structure, while also giving me ample time to read and write–two things that sustain me. Because covid-19 has forced most universities to shift online, I’ve even returned to school as a full-time student, which happened sooner than I expected. As tired as I am of isolation, it’s provided me with a unique opportunity to focus on my recovery.

I know, eventually, there will be an end to all of this hermitting. The snow will melt, the pandemic will subside, and classes will be held in person again. I’d like to think there will be a day where I’ll forget how it felt to be this isolated. But until then, I’ll continue to make the most of all this time alone. (Which right now, if I’m honest, means watching Ted Lasso every night.)

May the power, WiFi, and central heating be with you,

Alli

In Another World

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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. 

Snotty Sob Sessions

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On October 6, 2020

In Uncategorized

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.

Healing is Hard

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On August 23, 2020

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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

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!!!!

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