The Unbreakable Hope

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

Tag: illness

My POTS Playlist

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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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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…
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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!
  15. 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

Shivering in the Shower: Girl vs Heat Intolerance

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On June 12, 2020

In Uncategorized

The steam was blinding. I inhaled it like it was cigarette smoke, inviting the vapor into my lungs and feeling it relax every tense muscle, one by one. The warm mist was like nicotine, soothing and addictive, and I came back every night to get my fix, eager and greedy. I was hooked, I was obsessed, I was completely dependent on a hot shower to keep me sane. 

A hot shower used to be my daily ritual, my nightcap and melatonin, but more than anything, it was my happy place; I adored hot showers. I loved the clean feeling I’d wear for the remainder of the night, the soft smell of strawberry soap diffusing sweetly from my skin. I loved the warmth that radiated from my body for hours, feeling snug and cozy and tenderly taken care of. I loved everything the shower stood for: relaxation, serenity, peace. My nightly hot showers were dear to me, a privilege I understood to be a joy. A privilege that, due to a chronic medical condition, was swiped from my grasp over the course of a year.

I used to always say “there’s nothing a hot shower can’t fix”. And for a long time, I believed this to be true. It could sooth heartbreak, rejection, bad moods and bad days. It could ease sore muscles, clear out sinuses, effortlessly untangling twisted thoughts and feelings. But when I was diagnosed with a debilitating form of dysautonomia last year, my beloved hot showers couldn’t make it better. In fact, they only made it worse. 

In December of 2019, a grueling tilt table test confirmed I was suffering from Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, partly because it’s a mouthful and partly because Big Long Doctor Words tend to freak people out. POTS is a benign condition, but don’t let the quirky acronym fool you; this disease derailed my life. I went from performing in three hour musical performances and juggling college courses with rehearsals to struggling to wash my hair or walk up a flight of stairs. This type of dysautonomia is typically characterized by racing heart rate and lightheadedness when the body is upright, due to a malfunction of the nervous system that poorly regulates blood pressure and heart rate. This makes walking or standing for moderate to long periods of time difficult and exhausting, and although this condition is not life-threatening, its debilitating symptoms are certainly life-altering. 

POTS is usually managed by increased salt and fluid intake, medications, and a modified, consistent exercise program, but it can be triggered by many different things. Warm rooms, hot days, standing up too quickly or lying down for too long. POTS can be triggered by dehydration, alcohol and hormonal changes, even from eating a moderate to large sized meal or particular foods. It doesn’t take much to send my heart racing, but heat is a consistent trigger for me. Within fifteen to twenty minutes of sitting in the sun, I begin to get tremors in my fingers, my heart rate increases, and I start to feel woozy and lightheaded if I try to walk around. This is because heat is a vasodilator, so the warmth causes my blood vessels to widen, encouraging blood to pool in my lower extremities and forcing my heart to work harder to pump blood to the rest of my body. Because of this, I’ve had to say goodbye to hot yoga, long days spent in the sun, tanning and sunbathing. I’ve said goodbye to saunas and hot tubs, most outdoor summer activities, and last but certainly not least, my beloved hot showers. Stepping into the shower at the end of a long day quickly went from a cherished stress-reliever and a therapeutic experience to a whirlwind of symptoms that sends me stumbling to the floor. 

A picture of me lying down after my shower, taken in May. I still do this often.

Within two minutes of standing in a hot shower, my heart begins to pound, my fingers start to shake, I struggle to breathe, and my feet turn purple. Afterwards, I’ll feel drained of all energy, dizzy and fatigued, and become glued to the couch for the remainder of the day. It still baffles me the way a simple activity can be such a challenge, and I’d be lying if I said I didn’t have a few colorful words waiting for whoever’s up top, in charge of the universe. But because of my stubborn heat intolerance, and because I’d rather not use all my energy for the day on a simple shower, I’ve been left with no choice: begrudgingly, I’ve adopted shorter, cooler showers and baths, sitting down in the shower in an attempt to avoid symptoms. Showers are now a “get in, get out” operation, and there’s no longer time or tolerance for things I used to cherish, like singing in the shower. As a singer and music-lover for as long as I can remember, this has been one of the hardest joys to lose. Frankly, I’d give anything to belt showtunes in the shower again. 

Because of POTS, I went from singing in the shower to shivering in the shower. I went from running and dancing and singing on stage to feeling completely wiped out from simply washing my hair. It’s been five months now of this new bathing routine, five months of temptation to turn the shower knob to the left, to claim back the heat and wash like I used to. Slowly, I’ve adjusted and gotten used to the chilly water, but there’s not a day where I don’t miss when showers were no big deal. When I could hop in quickly to start my day, or take my time and unwind for the night. I miss when they didn’t have to be planned strategically with my medication regimen, aching to go back to the days when I had no idea what a beta-blocker did. I miss when water temperatures were out of preference and shower lengths were out of pleasure, when my bathroom was a private karaoke bar instead of a harsh, challenging terrain tackled day after day. There’s no denying my new shower routine is by far more eco-friendly, but I miss the privilege of a long, hot shower; a privilege that used to be mine. 

These days, I can’t go outside without an ice pack or a fan. I can’t stand in the shower, take a hot bath, enjoy a long day at the beach, or sunbathe in the summer. Sometimes I feel overwhelmed by all the constant “can’t’s”. I get sick of the “used to’s”, of the “not right now’s”, of the “maybe’s”, and the “one day’s”. I feel like I’ve been waiting forever for the “one day’s”. For the day I’ll be able to stand in the shower again, belting and riffing to my heart’s desire. For the day I’ll run a mile and not think twice about it. For the day I won’t have to worry about hot days and ice packs and whether or not a lovely afternoon outdoors will spark a nightmare of symptoms. I don’t know if I’ll ever be able to truly express the strain of living restricted by your body, spending day after day dictated by an illness. I hope one day I’ll finally be free, and there is a part of me that’s brave enough to believe it, but sometimes “one day” feels perpetually far away.

Pictures of me and my gear: an ice pack, personal fan, cooling cloth, electrolyte drink and an ice cold smoothie. I don’t use all of these tools every time I go outside, but the ice pack, fan, and electrolyte drink are must haves whenever it’s time to brace the summer heat.

But within the past few weeks, something beautiful has happened. I’ve noticed myself singing again, mindlessly, as I move about my house. A few nights ago, as I grabbed my pajamas and drew up a cool bath, I noticed myself humming an old favorite Taylor Swift song, something I haven’t done in quite some time. I stopped for a second, realizing it’s been over a year since I’ve had the energy to do this, to hum and sing like the music was a part of me, an extension of my spirit. To feel comfortable enough walking around my house, with fewer symptoms and much more ease, to express peace and contentment as music into the air. These days, thanks to physical therapy and my medication regimen, I’ve been able to move through the world almost how I used to, with lyrics and melodies and catchy tunes pouring out of me. For a moment I was struck by this facet of myself, the one that has energy for singing, for creativity and artistic expression, was here again, and it had defied the odds and risen from the wreckage of a life I loved and lost. It was a simple moment shared with no one but me, yet instantly I felt unified, whole, like all the broken parts of me were mending together. Like my emptiness was beginning to fill, like all the love I thought I lost was finally coming back to me. 

Sure, it’s still not singing in the shower, but I’d say it’s better than not singing at all. 

You get used to chronic illness, but you also never do.

By

On May 26, 2020

In Uncategorized

It is a typical Tuesday morning, and my mother is knocking on my bedroom door. She comes bearing breakfast, carrying a vibrant red tray that holds a plate of fried egg and potatoes, a small, ripe orange, salt tablets and an electrolyte-filled water bottle. She’s wearing a smile and summons the sunshine, opening up my blinds to let the light in. “Good morning” she says, delivering a kiss to my head. She leaves me to wake up, and heads back downstairs.

I nibble on the kind food, waiting for my medicine to kick in before I can rush to the bathroom. I am grateful for her generous labor in the kitchen, aware of how much thought, time, and energy she put into making this food, but I also feel angry that I couldn’t walk downstairs and cook breakfast myself. I juggle this gratitude and resentment as I lazily circle my feet, stimulating blood flow and nudging my tired, cranky body to begin this new day. 

My mornings weren’t always so slow, and it didn’t always take an average of two and a half hours to get my body functioning, but everything changed after being diagnosed with a chronic, disabling health condition last December. Vaguely, I can remember the days where I’d spring out of bed, throw on my sneakers, and head out for a two mile run before school. Those mornings seem like ages ago, like memories that belong to someone else except they don’t. They’re still mine. I have to remind myself of this often.

 It’ll be at least another hour of circling my feet and waiting, an hour of getting up just to sit back down all the while chugging oceans and oceans of water. I’ve gotten pretty good at filling the minutes, taking up journaling, meditation, and games of Words With Friends, but some days I can’t help but loathe my demanding illness and the way it steals time from me, daily. Some days I’d trade the extra hour in bed in a heartbeat for those dingy sneakers and early morning runs. Some days I’m tempted to scream, “Screw it!” to the salt tablets and the water and the waiting, throwing on a pair of workout clothes and running out the front door. But I know I wouldn’t make it very far. I know with my condition and these early hours, I’d hardly make it to the living room, let alone down the street. On these days especially, my body feels like a cage.

Picture of my old running shoes.

It was December of 2019 when I was officially diagnosed with a common yet scarcely known medical condition. After over a year of debilitating fatigue, dizziness, heart palpitations, and other miscellaneous symptoms, my doctor confirmed I was suffering from a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (also known as POTS). This condition affects my heart rate and blood pressure whenever my body is upright, making it difficult to walk or stand for long periods of time. Things like dehydration, heat, or extended periods of inactivity can intensify my symptoms, which is why mornings can be such a particular challenge.

With POTS, every morning is a battle. After lying horizontal for eight hours, it takes a lot of time, salt, and fluid for my body to tolerate being vertical again. A good, long night of sleep means waking up dehydrated, and waking up dehydrated means it’s even harder for my stubborn, misbehaving nervous system to regulate my heart rate and blood pressure. On good days, my body will wake up within the hour. On bad days, it can take up to five hours before I am finally functioning. On flare days, I never reach “functioning” at all. It’s been almost a year and a half of these fluctuant mornings, and waking up into a flare day is still an infuriating letdown. 

On this typical Tuesday, I have physical therapy in the late morning. After all my tedious preparations, my mom and I climb into my car, her in the driver’s seat and me riding shotgun; a switch that is now routine. I sneak a quick glance at my mother sitting in what used to be my seat and feel my heart twinge with longing. As a twenty year old, I miss the freedom of sitting behind the wheel, and the independence that comes with a license and a set of wheels. I miss coasting down wide Texas roads, belting all my favorite songs, and mindlessly heading wherever I needed to be headed. These days, I’m scarcely headed anywhere, save physical therapy and my favorite local burger joint, and even before the entire nation locked down for a raging pandemic, I’ve been essentially homebound, my life revolving around physical therapy, doctor’s appointments, and sitting in the park. How did this happen? I wonder yet again. When did I become so boring and sad and crippled, and how do I make it stop? Turning my head, I look out the window, knowing the unchanged answer to these persistent questions. Still, I can’t help wishing it was different. 

Picture of me after physical therapy with lunch from my favorite local burger joint, P. Terry’s; My family likes to call this “PT after PT”.

I stroll up to the front desk, signing in for my session and beginning my usual small talk with the charismatic receptionist. “What did you do this weekend?” she asks, innocently and unassuming. Considering how it rarely varies, this question shouldn’t be so hard, but I find myself scrambling to think of anything significant. “Uh, honestly, I can’t remember. Just a typical weekend I guess.” I reply, paired with a basic shrug. My weekends are quiet now, given that I’m still quite physically limited and because of this they blur together, usually consisting of the following three things: reading, writing, and completing my at-home physical therapy exercises. It’s a routine that still feels novel and odd, another aspect of my new life I’ve yet to settle into, and I often find myself embarrassed of its stark simplicity; it’s painfully uncomfortable to admit how physically limited I currently am. 

My illness has changed many things about me, including what I can and can’t do, and this new life I’ve been thrusted into frequently feels like it was meant for someone else. Even in the forgiving privacy of my bedroom, I am constantly surrounded by pictures, clothing, trinkets and trophies curtly reminding me of the life I’ve had to let go of this past year. I can’t get dressed in the morning without seeing t-shirts representing programs and communities I used to be a part of, or hop in the car without seeing college bumper stickers that were once filled with pride and promise, but now burn with the sour taste of sorrow. Every new day of mine starts and ends in a shrine of my old life, while the hours in between burst with reminders and recollections of everything I’ve lost. For the past eight months, I have fumbled around my childhood home, trying to accept this new version of myself, all the while resenting that it even exists. 

I’ve become a regular at the physical therapy clinic over the past five months, consistently coming twice a week for my hour-long sessions. I’ve never really been a regular anywhere, and I certainly never expected it to be here, of all places. As I set up in the gym, waiting for my physical therapist to finish up with a previous patient, I take in my familiar surroundings and wonder how this accustomed routine can still manage to feel so foreign. A year ago, I was in class at a university I adored. A year ago, I was juggling homework assignments with rehearsals, singing Italian arias in practice rooms and wondering what musical might be chosen for the upcoming semester. Now I’m sitting in a gym at a physical therapy clinic, peddling my feet on a recumbent bike and doing exercises that are designed to help me stand in the shower and go to the grocery store. The change is enough to make me dizzy, or maybe that’s just POTS.

Despite the overwhelming change, I’ve discovered the remarkable capacity to adapt that every human carries within. I’ve learned that it doesn’t take long to latch onto the in’s and out’s of chronic illness, and I’ve quickly gotten used to the salt tablets and electrolyte drinks and slugging liter after liter of water. I’ve gotten used to my medication regimen, the slow mornings, even having to sit in the chilly, shorter showers I’ve begrudgingly been forced to adopt. But I’ve never gotten used to the loss illness brings, the persistent canceling of plans, and all of the sacrifice that comes with putting your health first. I’ve not yet gotten used to the novel post-diagnosis life, the “new normal” people speak about that’s never once felt normal to me. I trust one day it’ll click for me and I’ll find a way to live beside or without my illness, going through my days unchained, but for now, I’m still figuring it out, half heartedly trying to get used to things I frankly don’t want to get used to. 

An assortment of my favorite salt tablets and electrolyte drinks.

I can get through a Tuesday with my eyes closed, and I can recite the sodium content in various different electrolyte drinks without missing a beat. Off the top of my head, I can tell you the average time it takes for someone to get diagnosed with POTS – a lengthy four years – and I can also probably crush you in a game of Words With Friends (I’m kind of a pro by now…). But the one thing I can’t do is get used to the realm of chronic illness, and all the sacrifice it demands. I can’t get used to the world of symptoms, the too many days spent feeling unwell, and the holidays and birthdays shared with my condition. I still have yet to settle into the unforgiving flare days, the laundry list of limitations, and all the stolen time that’s taken from me daily. I can’t, I won’t, and I don’t think I ever will.

You get used to chronic illness – after all, it is chronic – but you also never do.  At least, I certainly haven’t.

“Hanging in There”

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On May 11, 2020

In Uncategorized

“How are you?”

The dreaded question. The lethal question. The loaded emotional landmine that’s constantly strewn about. It’s asked at the grocery store, at your therapist’s office, when you bump into an old friend in the middle of a busy parking lot. Sometimes, it’s a question we’re ready for. We’ve come up with some clever, creative way to deflect what’s really going on inside, or we brace it like an aggressive bust of wind, brave and unnerved. Sometimes, we’re not so ready. It catches us off guard, sends daggers into fresh wounds, and adds another layer of confusion to our frayed, dismantled lives. “How are you” is a question with various layers, used in various situations, for various different reasons. If you’ve ever found yourself hating this question, then this post is for you.

I’ve been asked this question a lot this past year. Often from people who knew I was in the middle of a grueling, tedious diagnosis journey, but also from people who were completely unaware of the unnamed, internal battle that completely uprooted my life. I grew to loathe this question and dread those three words because I never knew the right way to respond. The people-pleaser in me was too scared to be frank about how absolutely not-fine I was, and then there were other variables such as who was asking, where we were, how much time we had to talk; I wasn’t going to unload my emotional baggage in the middle of the grocery store to a mom of an old classmate I hadn’t seen since elementary school. She had frozen peas in her cart. I had a racing heart rate and limited ability to stand. That was not the time to unpack the unraveling of my old life. That was not the time to be honest. 

A lot of times, I lied about how I was doing out of the sole purpose of convenience. It’s easier to stay on the surface of feelings when time is running short, when schedules are packed and rigid, and diving down to the depths of our darkness is an activity we don’t have time for. Other times, I lied to avoid derailing the conversation, or making friends uneasy about how upset I really was. Many people don’t know what to say when the response to “How are you?” is anything less than “fine,” and I wanted to prevent the lengthy awkward pauses, the stammering and searching for words that come when people grow uncomfortable. I was tired of my reality making people uncomfortable. So at some point, I locked the truth away. I stuffed it into the bottom of a drawer like a ratty old t-shirt, unfit to wear in public. 

Sometimes I did try to be honest. I tried to tell my friends and family how hard it was to be at home, debilitated and overwhelmbed by an illness that at this point, was still unnamed. I tried to tell them how envious I was of other people who were still at school, living the life I wanted, and how difficult it was to watch the world go on without me. Sometimes my candor would open up the conversation, allowing a deeper connection to take place between us. But many times, especially with young people, I found they would freeze up, starkly unequipped to deal with these kinds of heavy conversations. My young college friends offered support and encouragement in the ways they knew how, and while their kindness and compassion deeply touched me, they usually didn’t have the life experience to fully understand and many of them felt pressure to know the exact, right things to say. 

I wish I would’ve told them that I never needed a perfect, comforting response. I wish I would’ve told them that it wasn’t advice or encouraging pinterest quotes I was looking for, but someone who would show up, who would weather the storms with me and speak honestly about what they couldn’t understand. I didn’t need my friend to be my therapist, I already had one of those and a great one, in fact. I didn’t need to be told “everything happens for a reason”, and I also didn’t need constant reassurance that everything was going to be okay. Somehow, I had quiet hope that everything would eventually work out (emphasis on eventually…), it was just buried underneath mountains of grief and hurt and anger and exhaustion. I didn’t need someone to fix my problems (though that would’ve been nice…), I just needed a friend to help me ride the waves.

Somewhere along the path of constant “How are you?” and “How have you been?” questions, I started to cling to the response of “hanging in there.” To me, it was like a neutral, meet-in-the-middle kind of answer; an optimistic reply that would assure my friends I wasn’t falling into a massive, black pit of despair. It wouldn’t cause the blunt discomfort the response, “absolutely, utterly terrible” would create, and it was also kind of halfway true, so it wouldn’t be considered a flat-out lie. And so it became my go-to. I used it at the grocery store, I used it on texts from friends at college, and I used it on distant family members, careful not to cause any unnecessary worry about my progressively worsening, undiagnosed medical condition. It was safe, it was easy, but it was actually still a lie. Looking back, I despise those three words now. I wasn’t “hanging in there,” I was hanging by a thread, and hardly, at that.

Picture of an old conversation via text, showcasing one of my classic “hanging in there” responses.

While I understand my motives and am aware of the sometimes necessary convenience of the typical “fine” response, I regret not being more honest when people asked me “How are you?” I used “hanging in there” like it was a synonym for “barely holding on.” I clung to the phrase like it was a state of being I could reach, if I just said it often enough. But “hanging in there” is not for when an illness uproots and derails your life. “Hanging in there” is for twiddling your thumbs as your dinner heats up, or waiting a week and a half for your online shopping order to be delivered. As much as I tried to deny it, “hanging in there” was a lie, and one I still regret to this day.

So how am I now? I’m a bit of a mix between restless and hopeful. Somewhere in between frustrated and okay. I jump between these like a ping pong ball, never quite landing in one, but not getting stuck in one either. I still haven’t mastered the loaded “How are you?” question, and I often find myself jumping to the “I’m good!” response a little too soon. But I’m learning. I’m making room for not being okay, and letting go of expectations of what that’s “supposed” to look like.

And what about you? Are you “fine?” Are you “hanging in there?” Or are you absolutely positively terrible, taking your days breath by breath and hour by hour? We’re living in unprecedented times, and that can bring unprecedented feelings. But I urge you to invite it all in, to reject the convenient, comfortable answers. I urge you to have those hard, heavy, honest conversations because frankly, now we’ve got nothin’ but time.

A Little Thing Called Hope…

By

On May 4, 2020

In Welcome

Is this thing on? Kidding, although considering how technologically challenged I am, it’s a miracle I was able to turn my computer on, let alone create this blog. I never imagined myself ever creating a blog, but hey, it’s 2020, I’ve got a few things to say, and frankly, I ought to get with the times. So, here I am. 

First and foremost, hi. Welcome. I’m so glad you’re here. Whether you have any experience with chronic illness, or if you’re an extended family member I’ve bribed to visit this page (hi Aunt Nancy, coffee’s on me this time…), I hope you can find something in these posts that resonates with you and makes you feel seen. A few weeks ago, I stumbled across a quote that shifted my perspective on the isolation suffering can bring. It said, “All the things that make us feel alone connect us.” I like the sound of that, and I also like the thought that this blog could be that kind of connector. That it could encourage us to use our stories of pain and hardship to bring us together, uncovering the powerful, resilient nature of the human spirit that lives inside each and every one of us.  

It was a little over a year ago when a chronic health condition took over my entire life. Over the course of a few months, I went from being a self-sufficient, independent college student to having a hard time showering or preparing a meal for myself. It was a lot to process – too much to process, really – so, I started writing. At the time, writing was out of necessity, a means of survival; something to keep my shattered spirit alive. And while it certainly has kept my battered heart beating, writing has also filled my days with infinite light, immense gratitude, and deep, true joy. Putting pen to paper has saved me again and again throughout my health journey, and I’ve been holding onto that buoy ever since. 

Over the past few weeks however, I’ve begun to wonder if my writing could be more than just a personal pastime. I wondered if I could use my words to raise awareness about a disease that affects more than 3 million people nationwide, yet is unfamiliar to a frightening portion of the medical world, and even more unknown to the general population. I thought maybe if I could tell my story about being a young person faced with illness, it would make other people faced with illness (young or not so young) feel a little less alone in their shocking “new normal”. And then I pondered, what if I shared what I’ve learned about living the unlivable, about putting one weary foot in front of the other even when I was fresh out of reasons why, and what if doing so actually helped someone? Encouraged them to keep truckin’ through their own unimaginable? If my writing does any one of these things, then this blog will have served its purpose.

I plan to speak about my own health journey through this site, but I would like to preface that with one thing: while my journey certainly embodies a lengthy experience with a chronic, debilitating health condition, from the very beginning, it has always been larger than that. Sure, it is a tale bred from doctor’s appointments, ER visits, referrals, and at long last, a diagnosis. But from the minute my illness made itself known, I unknowingly embarked on a journey of faith, a discovery of strength, and a quest for joy in the darkest days of my life. This story of mine is not solely a story about illness, it is also a story about hope. 

On my darkest days, hope shined inside of me like a flashlight, piercing through the blackest of nights and illuminating the way forward. On the toughest mornings, hope pulled me off the bathroom floor, pushed back my shoulders and straightened up my spine, convincing me to keep forging ahead. Hope was there, always, somehow, even when it felt like my illness took everything from me. No matter how great the storm or how extensive the wreckage, hope never left my side.

This past year has taught me a lot about hope. I’ve learned that it comes as a concentrate, that you only need a little, and a little is enough. I’ve learned that it’s indestructible, that it can weather the hardest of angers, the fiercest of resentments, and that hope is stronger still. Perhaps that is the most important thing I’ve learned, how strong hope truly is. It is stronger than pain, stronger than fear, so strong in fact, it is unbreakable.

That hope lives inside all of us, but it belongs to those who tap into it. The ones who look defeat in the eye, and instead, choose hope. 

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