Living + Creating with Chronic Illness
The more people I meet, the more I hear the term "chronic illness". It was strange at first, because these two words felt intimate and inexpressible for so many years in my life. As I dive deeper into this creative community, I find more and more people harboring these struggles as well-- And wonder, why is no one talking about it? The words "chronic illness" are uncomfortable for many people, a quick need to shut down the conversation and tune into something more casual. But for many of us, chronic illness is incredibly relevant. In our daily lives, thought process, and even our inspiration. It shapes who we are as artists; as humans.
I had been battling several situations with my health over the last decade. As a child, I was never ill. Blessed by never being in a doctors office. And at 18, it all changed.
The thing about health is, it's always there-- until it's not anymore. It's something so significant, so vital in the course of our lives, yet we never really appreciate it until it's turned on us completely.
When turning 18, several years of quiet symptoms became more relevant, leaving me bed ridden and extremely sick. After several rounds of doctors and testing, they found a rare mass wrapped internally in nearly half of my abdomen. There had been less than 300 cases known in the United States. Engulfing most of my organs and intestines, I needed a high risk 14 hour surgery; hoping the mass they removed would be cancer free. At the time, I was someone who was fearless, naive at what was to be faced in the coming months. A year later, I remember sitting across from my surgeon and thinking, "How could he not tell me how fucking horrible this was going to be?!"
Laying in pre-op the day of, I had to sign and go over medical forms with my family. Because I was 18, the doctors needed to deal with me directly. My throat began to tighten as they described a 40% chance of complication on the table, the need for an epidural to keep me from feeling below the neck after surgery, chances of medication complications. Suddenly, I was a terrified child being wheeled into an OR-- praying to anything, anyone-- that I would have the chance to wake up.
"Let me not pray to be sheltered from dangers but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it."
The transition was quick. I was suddenly reflecting on each and every decision over the last six months; wishing, praying and hoping that I had the chance to live my life as I always thought. To have a realization this catastrophic at 18, it changes you. Some go their entire lives without a similar experience. I have kept that feeling close, in a safe place-- ever since.
Needless to say, I was the lucky one. My mass came back benigne, and I was able to keep all interfering organs. The following weeks were far from easy. My diaphragm muscle, gallbladder and intestines had to be cut through and internally stitched back together. Breathing was difficult. My lungs quickly filled with fluid. Intense, burning reactions to pain medications. Each day seemed more complicated than the last. Drainage tubes from my throat to my stomach prohibited me from all fluids. I lived to sleep. More pain meds, less consciousness. I remember, very vividly, no longer wanting to wake up.
Every little obstacle that occurred those first few weeks just prolonged my recovery, and made my stay extend. After several weeks in ICU with feeding tubes, cathodors and pneumonia-- I was finally on the road to recovery. I remember taking my first step with my parents and nurses at my side-- unbearable pain searing up my body-- and realizing just how ungrateful I had been prior to that moment. After the high doses of pain medications began to lessen, I became more aware of the pain and all that I needed to do to get back on my feet; mentally and physically.
One of the last days in the hospital, I remember finally lifting my gown to see the incision. Staples lined the middle of my stomach, the swelling making my body feel foreign and unfamiliar. Running my fingers across the wound, tears began to stream down my face. It was that moment, I remember, where I decided I had two choices: wallow in self pity and insecurity... or dig deep to pull this new, stronger version of myself, back up.
This was the beginning of my journey with chronic illness, and something I look back on as one of the most defining moments of my existence. Before my surgery, I lacked all awareness. Not a single sense of gratefulness for the life that I was given. In an instant, it all changed.
Doctor's blame my diagnosis' on my surgery. Due to the amount of stress my body was put through in recovery, I developed several auto immune diseases-- causing my body to attack itself. First it was Celiacs Disease. Then came the Hypothyroidism. Then the Polycystic Ovarian Syndrome.
Test after test. Specialist after specialist. The strangest thing, though, was that I acclimated quickly. Feeling like shit every, single, day-- began to feel normal. I spent two years living in a complete and total fog. It felt colorless. Tasteless. I thought this was life. I forgot what it was like to wake up without painful symptoms. Days in bed turned to weeks in bed. My illnesses started to define me. And let me tell you, that is the most dangerous, horrific thing you could ever do.
We never ask to be placed on our journey. Regardless of what we think we deserve, it's all irrelevant. Bitterness and self pity do not lead to healing. We may not choose our health, (or any other demons you may be battling, for that matter) but we do have control over one of the most powerful weapons ever given to the human race: our thoughts. So, I began to show up. Everyday. In little ways, for only myself. After years of feeling defeated, I began to recognize that this was the best step towards the healing process.
"Healing" does not mean all conditions clear. You'll toss the medications, say goodbye to chronic pain and live a life far, far away from your diagnosis. Instead, healing refers to a state of mind. Acceptance, strength, gentleness. Showing up everyday, and not allowing that diagnosis define you. Healing, refers to getting out of bed and being your best self on the days where you feel unstoppable-- and also refers to the days that you don't think that you can.
We are human. There will be days of tears. Days of hiding under covers, days where we feel defeated. It's shrinking those days-- bringing them down to a few a month or every few months. Slowly cultivating the mindset that we are stronger than even our worst days, our worst feelings, and our worst symptoms.
Don't rely on doctors and medications. Take your life into your own hands. Eat better. Exercise more. Listen to your body, for gods sake! If you're tired, rest. Be gentle with yourself. Listen to the warning signs. Find a support system. People to check in on you, remind you why this life is so magnificent [and rewarding]. Relax. Go for a walk, lay in the sun, make a good playlist. Meditate. Challenge yourself. Visit new places. Reflect on how you're feeling. If you're sad, cry. Write that shit out on paper. Connect with others who fight similar battles. Don't give in to that weak little voice inside of your head. You are not that voice.
That's the thing about chronic illness, what makes it chronic. It's not like the flu. or strep throat. It's not a week of suffering, high fever, and then gone. It's there,forever. On your best days, your worst days, and even the most important days of your life. Are you now your illness? Stop looking over your shoulder, waiting for it to conquer. Start living everyday, through the pain, and embracing it. Because without it, would you be you? I, for one, would not be.
I am grateful for each scar, each medication, each day of defeat. Why?
I have air in my lungs. A powerful heart beating inside of my chest. I am stronger than most will ever have to be. I am grateful for life. I am capable of anything. I harvest a soul much greater, much more brilliant, than any part of my physical body.
Find the willingness to show up, and do it every. single. day.