The Gilmore Book Club

How I Overcame My Chronic Illness To Achieve My Dreams

If you were to chop down a tree and count the rings inside, you could determine its age, how many winters it had endured, how many springs in which it blossomed. Humans are not trees, and the outer reflection of their age is not always a true reflection of what their bodies have endured or what their minds have learned. If you were to cut me open, instead of rings, you would find a network of scars, signs of wounds that never heal and that reopen without provocation-all invisible to the outside world, evidence of erosion that do not normally appear in the bodies of the young.

Almost half of my life has been spent battling Fibromyalgia, a chronic illness which is characterized by overactive nerves. Those nerves are falsely signaling to your body that you’re injured in some way, and your body sends its warriors to save the day. But the warriors are fighting phantoms. Instead of helping, the fighters only cause more pain, and result in fatigue due to all this extra effort. It’s an endless process, each stage of the illness born from another like the regenerating heads of a Hydra, three new symptoms or pains sprouting from the defeat of the first.  The symptoms can vary from person to person, but the pain and fatigue are always constant companions to many.

My old world was gone; that was clear. My new world was emerging with pain and fatigue as its sovereigns, the all-powerful beings to which my will and my body was trapped in endless service. Day by day, my situation remained the same and I began to lose hope of returning to the old world.  

For a while, maybe a few months, my mind was my only refuge. Though beset by a brain fog attributed to Fibromyalgia, my mind seemed to be the only part of me that could still function. For a while, I continued to dream. When typing or writing was too painful, I played my stories as movies in my mind, visualizing the scenery and characters, rehearsing the dialogue and blocking as many times as necessary to keep a record as strong as words on a page. When my body was weighed down with fatigue, I danced in my dreams, executing tour jetés that reached the stars and pirouettes more brilliant than the moon. When my voice failed and turned into the whine of a braying donkey, I sung to the insides of my mind, deluding myself into thinking that if I belted the harmonies loud enough mentally so they’d radiate throughout my entire body, my voice would have to follow suit and emit the correct note.

But as strong as I was, my inner strength began to fail as my physical strength continued its absence. And as day after of endless torture and exhaustion passed, I began to let go.

There is a sensation that occurs with prolonged tragedies such as this. Over time a little hole at the bottom of your heart develops, so small you probably don’t even notice its presence. Bit by bit, the essence of who you are drips out and disappears. Eventually you feel yourself begin to drain away, and you attempt to patch the hole and catch the drops before they fade away. But your hands are already so full, so you fail to catch anything.  Even though you’re now aware of the loss, so much has already dried up as if everything evaporated overnight.  And finally, you realize that everything that made you who you are is gone, lost to the overwhelming pain and fatigue. You are now just a shell that used to house dreams and hopes.  That shell takes you through the motions of everyday life, but the shell remains just that. It is empty. You are empty.

As empty as I was, Edna Pontellier was too. The latter chapters of Kate Chopin’s The Awakening recount Edna’s return from summer at the beach to her New Orleans home. Back to a life of paying calls, arranging the furniture, and organizing dinner for her husband. And Edna has had enough. So, she begins to embrace the feelings she has for Robert Lebrun, the man who is not her husband. Edna stops paying calls to society women and begins to focus on what brings her joy: painting and drawing. She even begins to contemplate moving out of her big house to a smaller cottage down the street. As her association and later her affair with Aleceé Arobin stirs up passion that has lain dormant for years, Edna is transformed. Though her husband has concerns that she is mentally unstable, Edna is simply claiming the independence, creativity, and freedom that she’s been starved for her entire life. In the end, Edna does explore her passion for Robert, but it’s not her romantic desires hold the most importance. To me, the message of the book is this: there is more to a person than the familial and professional titles that are assigned to each person and often accompany them for life. There are passions and dreams and ideas to discover. There are different facets of talent and personality to discover. There are numerous journeys and adventures on to embark. There is more. There is so much more. And by exploring and embracing those all options can you truly find yourself.

I remember feeling devastated the moment I realized how empty I had become. There was nothing left of who I was. All my dreams, my hopes, my passions, my desires, my longings, even many of my thoughts had completely vanished. I was lost. Lost and empty. I will always mourn the loss of the person I thought I could be and all the opportunities I missed: the friends I could have made, the places I could have gone, the things I could have done. But all of those chances are gone forever; there’s no going back. All I can do is learn from my past experiences and move forward. And that’s what I did. I vowed to myself that I’d never let this happen again. Never. No friend, lover, co-worker, teacher, family member- no disease, no job, no experience would ever take away my dreams and my soul from me again. And if it did, if I started to see that hole in my heart again, I’d fight like hell to save every last drop that had dripped out. I’d cement that wretched hole with all the plaster I could find. I’d save myself.

But getting back to myself wasn’t easy. It’s like pushing an enormous boulder up a steep hill only to have the boulder roll all the way back down again as soon as the summit was in sight. How do you regain who you are when you barely have the energy to think or open your eyes? How do you begin the journey to rediscover your soul when you’re physically unable to get out of bed? Where do you even start? 

It’s taken me years to begin to find my way back to the artist I was before, and I’m still learning and adapting when my illness presents me with new struggles, but I’m holding on to the artist’s soul I was born with. It’s taken me way too long to get it back, and I’m never letting it go again. Not for anything. Come hell or high-water, come illness or grief, come doubt and rejection, I will keep creating.

From the smallest acts like writing for only five minutes, or going back to mentally review stories, I’ll keep my imagination alive. I’ll attend panels and webinars, visit museums, and immerse myself in as many methods of art as I can. Even if it’s just dancing in my living room for the fun of it, I’ll tend to my artist’s soul as much as I care for every other part of my being. And because I’ve devoted myself to such care, I’ve rekindled my dreams, my vast and innumerable dreams, the ones that push me to keep working and to keep fighting.

It’s clear from this story my life is not a fairy tale. My awakening didn’t magically manifest the fulfillment of all of my dreams, but I’m happy to say that a least a few of them have come true. And the rest are still to come.

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