HOW A CHRONIC ILLNESS SHOWED ME HOW TO BE THE HERO OF MY OWN STORY
Not so long ago, in a galaxy not so far away, a girl gets mysteriously ill.
So there I was: fifteen years old and feeling more like I was one hundred and fifteen. Climbing a flight of stairs was a perilous and exhausting journey, grasping onto the railing and pulling myself up, wishing I had the agility of Luke Skywalker expertly swinging from the swamp vines with Jedi-Master Yoda strapped to his back. Putting on a pair of jeans became an intergalactic battle, complete with a calculated plan of attack. Standing would use up too much fuel I’d desperately need later, so I’d sit on my bed to slowly pull on each leg and shimmy the pants up my legs. Then, I’d lie back to pull the pants around my waist and send up a small prayer, “please let me be able to button these.” My fingers were so swollen and stiff that it took me several tries to pull up the zipper and fasten the button. I’d then have to bounce myself up and down on the bed a few times, gaining enough inertia to propel myself up from my seated position because my legs didn’t have the strength to stand without help. But there was no miraculous black suit of armor that could help my body function regularly, no Force to move objects for me. It hurt to breathe. It hurt to blink. It hurt to exist.
Moments of darkness in light are as numerous in pop-culture as there are stars in the sky. Star Wars is full of Jedi Knights literally cleaving the forces of darkness in two with their brightly-colored sabers of light. There’s Frodo walking around the creepiest places of Middle Earth with the brightest Elven star in his pocket. Professor Dumbledore advises his students that the strength of light brings happiness in dark times. And the sun’s rays overtaking the darkness of the night, touching the body of a dead lion on a table made of stone.* I could keep going. But those are all fictional movies and books. What do they have to do with anything?
After reading The Power of Myth, there’s now a picture in my mind of Joseph Campbell nodding his head and saying: “they have everything to do with everything.”
Remember, myths are like emotional, spiritual, and psychological histories of the world. All of our experiences, replayed over the centuries, with the same core attributes. According to Campbell, every hero, no matter if he’s in Outer Space or Middle Earth, or the world we call our own, every hero essentially follows the same journey. Now there are a lot of details and steps in this journey, and getting into all of them also takes us through Campbell’s other book, The Hero With A Thousand Faces, so I’ll give a short overview for each section of the journey we encounter.
The Call
First thing’s first: Departure. All journeys have to start somewhere, and even if it’s an emotional journey, there is a starting point, a point of homeostasis, the current baseline for which “normal life” is attributed. To start the journey, one must leave this place. You can start on the journey of your own choosing, like Janie in Their Eyes Were Watching God, or the call can explode into your life and force you onto a certain path like if the Empire kills your only living family and some droid needs you to save the cosmos by delivering a message to some Obi-Wan Kenobi guy. And so, you set out. But make no mistake, the journey of a hero is a perilous one and no matter if you succeed or fail in your mission, death and destruction are guaranteed.
Supernatural Aid
On your journey, you will meet your advisor. This advisor could be anyone: an old friend or mentor, or that crazy guy who lives down the road who turns out to be a Jedi Master. They could have supernatural powers like the ability to levitate a spaceship and pull it free from its swampy prison or use just a few simple words to influence people’s thoughts and actions. They may even be a tiny, green being who has a way of talking backward. Whoever they are, whatever they are, they contain the mysteries and wisdom of the universe and use that knowledge and power to guide you on your way.
As much as I would have welcomed supernatural aid, I never did encounter any Jedi Masters or wizards to help me through the pain. Instead, doctors ran blood tests and took x-rays to help advise them on their course of treatment. Despite all the tests, doctors were still unsure of my diagnosis and what medication would be best to treat it. My family and friends were there for me, but a chronic illness has a way of making you feel alone even when you’re surrounded by people, and mine was making me feel like I walked this journey alone. And in the end, each hero does undertake the quest alone, no matter the size of the fellowship surrounding him or her, because the biggest battles are often fought in your own heart and mind instead of on a battlefield.
Regardless of the type of quest, each hero must face multiple obstacles in which you must use your strength, cunning, and dedication to overcome each challenge. Each one seems more impossible than the last, and every encounter drains your life force, but you recover, and in doing so, you prepare to face the greatest challenge, the deadliest challenge that is still to come.
The Belly of the Whale
Think of one of the worst moments in your life, a time when you thought all was lost and there was no way to escape. It’s the time when you feel trapped, entombed in the troubles you’re facing. And when it comes to the Belly of the Whale, there are a ton of different scenarios that count, whale or no whale. I’ll give you some examples. One of the most popular ones is the Biblical character Jonah, who was swallowed by a whale. But how about the Pit of Despair, that you can only enter and exit by going inside a tree? Or Luke, Lei, and Han stuck in the trash room on the death star trying to avoid being compacted into oblivion or being eaten by that gross worm thing that lives in there. All good Belly of the Whale examples. And if those fictional examples aren’t working for you, here’s a real-life example of mine.
Each day was an endless universe of agony. Each day was the worst day of my life. Every time I opened my eyes in the morning, pain and exhaustion were there to greet me. They encapsulated me so fully, that I began to feel as if my inner being was slowly fading away, and all that was left was a thoughtless shell. My own body had turned against me, betraying my life to the Dark Side. Shrouded in all that anguish, I wondered how much of my true self was left. Had the Dark Side completely taken over?
In Star Wars, two of the most iconic figures are fully encased in armor: Darth Vader and his army of Storm Troopers. This armor can be lifesaving, but in return, you must sacrifice your individuality. All facial expressions are completely hidden behind a mask, and any other identifying marks or traits are concealed. Even their voices are distorted by machinery. I don’t entirely apply my theory to Darth Vader, but I do believe I know what it’s like to be a Storm Trooper, to live as a clone, while only traces of your previous humanity remain. I know what it’s like to be stuck in a body that doesn’t feel like yours, weighed down with the evils of the world that are out of your control. Any kind of armor usually adds weight to what you must carry, but a chronic illness is a different burden to bear. Imagine your veins filled with every grain of sand on Tatooine. Imagine all the rocks of the asteroid field of Hoth attaching to the cells of your body, and there’s no zero-gravity phenomenon to lighten the load. Imagine molten carbonite replacing your blood so that you feel unbearably frozen and unable to move And that is the life I lived, every day, facing the mask of the Dark Side, trapped inside a world I didn’t know how to escape.
Moments Before Death
It’s a bit shocking to discover, but a hero’s journey always includes a moment of death. I say a moment, because, in order to become a hero, one does not have to physically die. True, Gandalf, Harry Potter, and Wesley are just a few characters who actually died- or were mostly dead- and came back to life in the usual sense. But the hero’s journey is not always a physical one; it’s a mental and emotional adventure that requires strength one cannot achieve by endless hours pumping iron at the gym. Instead, death is a metaphor. It’s a harrowing experience in which all you thought you knew and all you thought you were has been challenged. A new way of thinking arrives, and a new you has replaced the old one. The old you is gone, never to return. The old you is dead.
My only solace against the force of my illness was going to sleep at night. Though finding a comfortable spot was painful, and even resting came with pain of its own, when sleep took me, I was finally free. And ever since then, nothing has felt more powerful at restoring me to a better condition than crawling into bed and going to sleep. I’ve always looked forward to going to bed, more than many other people my age, and I sleep more often than anyone I know. But those moments before sleep takes hold, these moments were when I could come to life, when I could dream anything into being. This is not the kind of dreaming you do when you’re asleep, but the stories and worlds you can build if there were no rules or restrictions, the kinds of adventures you could have if magic existed, the things you could do if your body did not confine you to your bed. I always thought these sleepy moments of world-building and character-forming were just an outlet for my creativity, a time to escape the life I currently lived and live another life to the fullest extent, the only limit was my imagination.
However, sleep can serve more than one function. It can be restorative, and give you the chance to dream, but it also signals a death we all experience- the demise of another day. And it aids in other deaths as well. Sleep too much, like I was forced to, and other lives you could have lived die off. Sleep could also be the death of bad moods, arguments, and indecision. So you see, these little deaths are all around us, but sometimes they take up a much larger part of our lives than we anticipate.
Death
Fibromyalgia was and is my own cycle of death. Those moments where I felt like I had nothing to give and the only solution was the inactivity of sleep, those moments are my death. Having a chronic illness actually comes pretty close to feeling ‘mostly dead all day’, every day**. But what happens when that death overtakes you and wipes out every plan and thought you had for that day? A hero would dive into the belly of the whale, a place where all seems lost and death becomes you. And that’s just what I did.
As each devastating day would end, I’d lie down and look forward to the embrace of blissful sleep, the only certainty of escaping absolute destruction, or at least putting it off for another day. For many days and many nights, my situation did not change, but I trudged ahead, hoping that this disease that plagued me would one day be conquered.
Where there is death, there is also life, a rebirth that always follows.
Rebirth
It’s clear to me now that the seemingly endless cycle of pain and every death-like sleep were my darkest moments. My belly of the whale. But each day I woke up, each time I had survived an onslaught of pain and fatigue, I was different. The person I was yesterday was gone forever, and no miracle pill could bring her back to me. But in her place was someone stronger, someone who had endured torturous growing pains to become a better person, someone who understood the mysteries of the world a little bit better.
Years of reading had taught me myths without me knowing. They showed me heroes dying and being reborn, shared their mystical advisors, and held my hand through the belly of the whale, each tale a crystal ball that showed me the way through death to being born again. Over and over, they showed me the hero’s journey, until the lessons and the steps were flowing around me and inside me like The Force. The myths had been written out in every single book I had read, until finally, they were written inside me too. I was reliving these myths each time I wrote, every time I lay dreaming in bed, each time I succumbed to sleep only to rise again the next day. Myths had charted a path for me before I had even started on the journey. Looking back, I now see how clearly the lines of the map of my life have been drawn. I see steps I’ve taken have been those of a hero.
I Am A Hero
My battle with fibromyalgia continues, years after its initial appearance, and the symbolic process of death and rebirth is ever-present in my life. It all used to seem so pointless, so cruel, but now its role in my story is clear. Years of life experience, extensive literary analysis, and the myths of the universe have taught me that it was all meant to be a part of a journey- the hero’s journey. This doesn’t make my path any simpler to walk, or my illness less painful to bear. It doesn’t make any future trials or trauma less painful, but it does give me something to hold on to. It’s my light in the dark. What was once random and inexplicable now has a purpose. What once killed me is now my life-force. The feelings I had to face, the lessons I had to learn, the knowledge I attained are now The Force of The Myths flowing through me.
The Hero’s Duty/Return
Now that the mantle of hero has been bestowed upon you, the journey is not over. Now, the adventure requires that you return to the world you once knew and bring with to share with others. And the way you share these lessons, that’s up to you.
I have always considered myself to be a part of the creative world. Whether I was writing or dancing, my heart was always that of an artist. I’ve dreamed of becoming an author or directing a TV show or creating a Broadway musical. Every one of those dreams already had a plan and passion behind them, but now they also have meaning, and more importantly, I now see how much each one of those creations has the capacity to affect others. Every word, every note, every movement conveys something. It’s up to me to ensure that whatever message it conveys helps the heroes of the next generation fulfill their purpose and has a positive impact on the world. Not every message is easy to hear, but as we’ve seen with the hero’s journey, that pain allows us to grow and to become better. How miraculous it is to be able to use your art to open people’s eyes to things they have never seen before, their minds to ideas they’ve never encountered or considered. But as it’s said, with great power comes great responsibility. That power to influence others is magnificent if used correctly, but detrimental when lacking understanding and universal truths. Those with the power to create art don’t always see or comprehend the impact their art has on the world. The more we understand about the universal journeys of our kind, the more we can contribute to a better life for others. That is the duty of a hero. That is the duty of an artist.
I’ve run the gauntlet of the hero’s journey time and time again, and that journey still waits for me in the future, always adjusting to the new person I’ve become. This blog, these words are my art, my interpretation of the things unseen, my understanding of the mysteries that shape our lives. As I learn and grow, so you will grow with me.
You are the hero
Many of you have already undergone such an adventure for yourself, you may already recognize the hero’s path in your own life, but if you haven’t, know that it lies ahead and that you have the ability to conquer it. And as you learn and grow and undergo the adventure for yourself, you’ll realize that you too are a hero. You too have faced impossible tasks, defeated unimaginable odds, and learned the answers to questions that we all ask of the world. Once you have been reborn, you will be called to share your journey, your art with the world. It doesn’t matter whether your art is a movie or mathematics or space travel, it will echo the truth of myth to the world all the same.
Luke Skywalker and Harry Potter, Princess Leia and Princess Buttercup, Obi-Wan Kenobi and Elizabeth Bennet- the list of fictional heroes is never-ending. Every hero of every movie you’ve watched and every book you’ve read has lived through the hero’s journey so that you could have someone to show you the way. They have embodied the myths so that one day you take up the hero’s story and continue on the journey. I see now where my obsession with books and writing have helped me, how they have given me an endless army of heroes to guide me on my journey. And now it’s my turn to do the same for you. Whatever pain you have endured, whatever trauma you’re battling, know that that experience is what transforms you into a hero. And while you take that journey, know that the heroes of all the myths and all the stories are there with you, just as I am with you.
And when you are reborn, you will join me and this glorious host of heroes, and together we will change the world, one hero at a time.
May the Myths be with you.
Revisit Part 1
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References:
Books referenced:
Campbell, Joseph. The Power of Myth. Anchor Books , 1991.
Campbell, Joseph. The Hero with a Thousand Faces. New World Library, 2008.
*The Lord of the Rings (The Fellowship of the Ring, The Two Towers, Return of the King) by J.R.R. Tolkien
*Harry Potter (Books 1-7) by J.K.Rowling
*The Lion, The Witch, and the Wardrobe by C.S. Lewis
Their Eyes Were Watching God by Zora Neale Hurston
Movies/TV referenced:
Star Wars: Episode IV - A New Hope (1977)
Star Wars: Episode V - The Empire Strikes Back (1980)
Star Wars: Episode VI - Return of the Jedi (1983)
“Girls in Bikinis, Boys Doin' the Twist .” Gilmore Girls, created by Amy Sherman-Palladino, season 4, episode 17, 13 Apr. 2004.
The Princess Bride (1987)