holes + chronic healing.

My second life began twenty-five years ago. I never thought I’d live to forty-six. My extension was granted to me by a sweet concoction of medicine, luck, and divinity.

At the innocent age of twenty-one, my parents’ Catholic priest stood over my prone body in the ICU and gave my last rites. I was millimeters away from a white curtain of death and somehow recovered. I say somehow, but really I know it was because of modern medicine and a lot of work, perseverance, and struggle. I say recovered. I really mean a new life. Recurrent lung infections, hospitalizations, IV antibiotics to keep me alive. And yet, I am alive. The first thing I said to my sweet mom was, “I’m not Catholic.” Her smile faded for a moment before she said, “Ok.”

Four years later. I was in the hospital four times a year with pneumonia that came on fast with a high fever and lungs flooding with dark green mucus. At twenty-five, I was officially diagnosed with cystic fibrosis (CF). I also have asthma and bronchiectasis in the lower part of my left lung lobe. Bronchiectasis is scarring in my lungs from the bacterial Staph infection that started this all, where I feel pain like being stabbed with an ice pic. In my second life, I have been hospitalized more than thirty times with pneumonia and lung infections from viruses, bacteria, and fungus. My lungs are a perfect wet habitat for colonizers.

There is a deep need to make sense of this second life in my analytical mind and my empathic heart. Alive in my second chance has been full of adventure and joy and love and incredible gifts of a partner and a healthy daughter. I have traveled through five continents. I have done work that felt swollen with Purpose. Yet, my aliveness has a shadow of invisible chronic illness. A double life. Time thriving in the world paralleled by time in a hospital room - an evergreen antagonist in my chronic narrative.

Medicine knows me and my shadow life. I am well cared for when in illness. But I don’t feel like medicine knows my functioning life or the struggle to regain my functioning life after an illness. Once my lung functions are back up and the colonizer is out of my sputum samples, I go on my way to rest, hydrate, and do the difficult work of surfacing in the world again.

And so I created a metaphor to describe my experience to flip the narrative of chronic disease to one of chronic healing.

Life with chronic disease is navigating a wide open field full of holes while carrying a tall stack of books - each representing my efforts to be parent, partner, daughter, sister, professional, friend, and community member. Each book full of stories and dialogue and email, conferences, meetings, discussions, travel. My big full life.

The field is a wide expanse of prairie grass skeletons and stiff leaves of yucca. Holes hidden behind my stack of books and the patches of snow. Each hole has a varying depth - some shallow causing barely a stumble, some oceans deep.

Life with cystic fibrosis is a life trying to avoid the deep holes, knowing they’re there. Not knowing when the plunge into darkness will occur. I carry my tall stack of books precariously balanced due to diligence and work, and something fragile and precious perches right on top.

Thriving means I move at a quick clip with my stack of books. Somehow balancing the tower, adding more to the stack, taking from other peoples’ stacks, sometimes even carrying their books. I move with intuition, training, intention, and work. Sometimes I move so fast it’s difficult to see or sense or feel or notice because the thinking brain is in command and my body responds. I propel forward.

Thriving looked like working full time as a science teacher, co-parenting an 8-year-old, and conducting research as a doctoral student. It involved travel around the world in service of my heart and paycheck. It looked like twice-yearly work in the Peruvian Amazon rainforest where I lay on thin mattresses surrounded by shields of netting. Where I am sung to sleep by laughing frogs and a deafening chorus of insects. And I feel most like myself. Thriving is busy and constant and always moving. It is the me that presents as “normal” even though it includes my shadow routines of medications, treatments, appointments, exercise.

Inevitable crashing into a hole. I knew it was coming. Somewhere in my nervous system, I prepare for illness. Sometimes falling involves an intense drive to the emergency room, a rapid decline riddled by fevers and wracking chest paint. Before Ivacaftor and Trikafta, revolutionary medications that treat the cause of CF, the fall was steep, sharp and sudden, marked by a fever of 104 and lungs filling like a car that fell in a lake. Slowly, steadily, with such great force it’s impossible to fight against the rising waters.

After scientific breakthroughs in medication, crashing became less fall and more slow elevator ride to the bottom. Big sicks came on slowly, creeping in starting with a taste in the back of my throat connected to a hollow ache throughout my body. I can sense the infection settling into the scarred areas of my lungs and its tendrils of taste and ache colonizing me. I used to brace for what was coming and do everything I could to deny. But as I age and grow tired, I surrender to the fall.

Whatever the speed of the drop, the books I have stacked up scatter. The fragile item on top shatters, I sit-my-ass-down at the bottom of the hole.

In 2019, the delicate item on top of my book stack was my regular trip to Peru, this time with my 18-year-old daughter. She was pushing past her comfort zone to go back for a second time, after being stung by an impressive inch-long wasp on her first trip, facing her fears. I felt overwhelming joy to share my favorite place with my favorite person.

On the morning of our early flight, barely dawn, I started coughing up blood. I sat in bed measuring globs of bright red mucus for twenty minutes to understand if I was actually bleeding or if something in my lungs knocked loose. Feeling stunned became a sensation of mourning. Our bags were packed and propped by the kitchen door. I thought through the remoteness of our lodge, 100 miles upriver from any major medical services. I resigned to my body while my mind screamed with the need to see the sunrise from the early morning boat ride to find tbirds with my girl. But the blood kept coming, bright glistening red. I called the doctor and knew. “You need to come in,” she said. As the books fell, the fragile item adorning them shattered in deep disappointment and conflicting conversations of compassion and contempt with my body.

The bottom of the hole is oddly comforting. Familiar, I envision a soft, pink lining of mosses puffy and soft like we imagine clouds. All responsibilities on the other side of my double life fall away as I move into shadows. My days become consumed by attention to my body - beyond the twice daily cup of pills there is pounding on my chest by a respiratory therapist four times a day accompanied by a pain like shaking a bag of glass. The IV’s pumping into my PICC line, urgent bathroom visits as a result of the IVS. Violent waves of nausea. My room door opens to residents, attending physicians, nurses, food deliverers, masked and gowned and gloved to avoid bringing more infectors into my space, even before covid protocols. They focus on my body and I focus on my mind. Letting go. Grieving and being grateful for a break from the fast-paced big, full life I worked damn hard to create.

As comforting as the bottom of the holes are, I’ve learned through some difficult lessons that I can’t stay down there. When I stay too long, depression takes over. I become numb to all things harmful and joyful. I stayed down there for a few years once. The climb out was brutal. But I do climb out. Slowly I find the books, gather them up, and begin to stack them cautiously and in order. It’s a laborious process done by a sluggish body.

This is where medicine stops. Once my chest x-rays are clear and my lung functions recorded by a single metric called FEV1 is increasing, I am discharged back into the world to begin the healing. Healing is the longest stage - the in-between when I have to navigate both lives. It is the stage that bears the heaviest burden and is discussed the least. The longest game in chronic anything is the mental one.

This interstitial is the in-between phase. The hardest of all the phases of chronic disease. The books in the stack I’m carrying consist of work responsibilities including hundreds of missed meetings and emails, assignments and project deadlines. The books are also the daily motions of a healthy person done without a thought like grocery shopping, cooking or microwaving a meal, laundry, even showering. Eventually, the books are stacked and I am holding them all again. I begin shuffling, then walking, and months later my movement forward through the field becomes running re-fueled by the need for a paycheck, but mostly my dignity.

Again. And again. And again.