The Unbreakable Hope

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

Tag: music

My POTS Playlist

By

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

By

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. 

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