It is October. My health has been deteriorating, but I continue to operate at full throttle. This is all I know. This is my way of being for the past 38 years. I convince myself that I can still go through life the way I’ve always done, doing ALL the things, giving everything 110 percent—school, work, counseling, my friendships, my marriage—everything except me. I feel empowered. (I have no control.) I feel strong. (I am so tired.) I am kicking my lung disease’s ass. (It’s winning.)
Perfection and over-achievement, this is what I strive for. It’s also killing me. I am losing myself. Basic human necessities are becoming less of a priority. I am so amped up all the time that I stop noticing hunger cues to alert me to eat. When I do eat, I am so anxious that my body burns it up, hungry for nutrients. I eat trail mix for dinner. Every time I try to eat, I have a coughing fit. I cough so much that my trachea becomes inflamed and all I can eat for one week is chicken broth and vanilla Ensure shakes.
I drop 13 pounds in one month. I cry a lot on the couch in my husband’s arms.
My chronic illness this past year has felt like a tide pulling me in. Several times, I have felt like I am stuck in a rip current, treading water, fighting to keep my head above the ocean, my bare feet kicking furiously as I struggle to find solid ground. I felt like giving up so many times. I grew so tired and did not have an ounce of energy left in me. When I saw my new pulmonary doctor at UNC in late October, she asked me on a scale from 1-10 how I felt overall. I answered a solid two. Even my husband was surprised by my response. I’ve gotten good at faking appearances and keeping myself in denial about how sick I really am. “You don’t look sick,” people often say to me.
Everything is always changing. That’s what my chronic lung disease has taught me. Just like how the tide rolls in and rolls out, so do the moments of our lives. Stuff happens. Sometimes things we don’t expect. Every day I wake up not knowing if it’s going to be a good breathing day or a bad breathing day. But this pattern of not knowing has helped me become more accepting of what is instead of how I think it should be. That’s not to say that on the days where I cough and wheeze for hours to the point where my bones feel like a rag doll that I don’t rage against the universe asking, “why is this happening?” or scream in frustration or cry in disappointment. Because I do.
Since my MAI diagnosis a little more than one year ago, there has been an ongoing tension between my lung diseases and me, a push and pull. This summer, every time I ran an extra mile or beat my previous time, it was like a big FUCK YOU to my chronic illness. I felt empowered. I felt in control. But when September came, and the fatigue drifted in like a dense morning fog, I started to feel like I was losing this fight again. By the fall, my illness began to pull me back to the sea and drag me under. I wasn’t expecting it. Allowing my doctor to hospitalize me in November felt like raising a little white flag, tattered and frayed. I surrender.
Late October. I have contracted another new, rare infection that is difficult to treat—and pronounce. It begins with an “S” followed by a train of many, many letters. My doctor’s words sound like white noise as she explains that I am “too young” and that we “need to be aggressive.” Over and over, I turn over in my hands the lavender Amethyst grounding stone I always carry with me to appointments. I hear “a couple of days” and “IV antibiotics” and something about a PICC line. She turns the computer screen toward me and points out the white puffs of cotton sprinkled throughout my left lung and the ominous black hole that is still visible one year later. “See this. I don’t like this,” she says, pointing with her index finger. She explains how we will work as a team and uses a beautiful metaphor of the both of us in a canoe rowing in unison in the same direction. She is my angel in a white lab coat. The doctor I have been waiting for. I am scared. I am in shock. But I believe in my heart that she will help pull me out of this rip tide and bring me to shore. She gives me hope.
That black hole on my CT image haunts me. Since my diagnosis a year ago, I often visualize what it looks like. When I run, I imagine that it’s shrinking in size. When I meditate, I think about transforming the blackness into a beautiful, white light with a purple ring of haze glowing around it. In my mind, I imagine my body healing itself.
Lately, I’ve been thinking about a painting I came across one year ago on a December afternoon. Its image made me pause. Standing before this abstract piece felt like looking in a mirror. I saw myself, or rather, a part of myself: a blob of thick black paint with layers of gray underneath and surrounding it. It’s how I imagined the inner terrain of my damaged lungs, and the recent cavity that has formed due to my MAI. It looked like an abyss of blackness, a pit. I felt consumed by its size, its darkness. It brought me to tears. In my mind I could hear my doctor’s voice explaining to me the black, shadowy splotch on my CT scan three months prior, and how he described it as a ball of glue. As I stood there, I thought about when I had my aura read a few years ago and the image it produced of a splotch of darkness in the center of my chest. This was before I or my doctors knew what was happening inside my lungs, the disease that was beginning to colonize in my upper left lobes. As I studied the painting longer, I noticed that a light hue of pink the color of bubblegum revealed itself under the dark glob. I smiled recognizing this detail. To me, that color symbolizes hope, that underneath all the crap that life sometimes deals us, there’s always a shade of pink–if you look for it.
That pink hue is the raft I cling to when the tide tries to take me out. It is the line my loved one throws me when I feel I cannot tread water any longer. It is the fire burning in my belly that I inherited from all my ancestors that came before me, who were tough as nails. It’s what pushes me every day to get out of bed and face whatever may come. That is the great victory. I am resilient because like Lady Gaga I was born this way. I am resilient because that’s who my family is. I am resilient because I watched my family overcome impossible things. My grandfather fought in and survived two wars, numerous floods, and lived to be 97-years-old. 97! My grandmother came to America thousands and thousands of miles on a boat as a young girl with her mother and siblings and built a new life and a family in a little coal mining town in Pennsylvania. She worked in a factory, became a young widow and lost one of her breasts to cancer. My mom quit decades of alcohol abuse on her own, cold turkey, and possesses an unbelievable drive and strength. She is always everyone else’s rock, including mine. My dad survived an aortic dissection, that statistics show he should not have outlived. He flat-lined during his emergency surgery and slipped into unconsciousness afterwards, and yet he is still on this earth with us cracking jokes and doling out wisdom to his three daughters. That’s what my family does. We carry on. They are survivors, and so am I.