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Watching My Daughter Swim Against the Tide of Invisible Illness

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Editor's Note

This story has been published with permission from the author’s daughter.

I glanced at my phone’s many messages while waiting for my late afternoon tea to steep. Mid-March and I wanted full on spring, but instead low ominous clouds hovered outside over the Sonoma hills.

On the phone, I see a picture of my daughter in a short white dress, red lipstick and heels, sunshine flooding her eyes. Apparently the weather was better in Tacoma, Washington, where she was finishing up college.

“Cute for graduation?” She texted. “Or not?”

Graduation! I’d forgotten to make hotel reservations, again. As if to do so might jinx the reality that we’d actually arrived. Four years of Casey navigating the waters of a small liberal arts college, which on any given day could be a gentle fish tank of guppies — or a shark tank.

“Cute.” I respond. “How was acupuncture?”

“I think it’s helping!”

This is what we do. Our life is one long conversation — short texts, long talks, social media call-outs. She tags me on Facebook as she posts an essay about cool mothers. I tag her back on Instagram, on a picture of anti-inflammatory smoothies. We FaceTime while I cook — she explains her thesis research findings to me as I drain the pasta. I describe her younger brother’s antics, most of which are horrifying, but we manage to laugh.

And we talk about her health.

Every day, every time, we check in on her body: the possible symptoms, the flares, the swollen joints, the innocuous but annoying hives, the life-threatening anaphylaxis, the migraines, her blood pressure, the effects of yoga on her back pain versus her mood, the possibility of a new medicine, the abundance of dust mites, what turmeric can do and what turmeric can’t do.

Casey fights a chronic illness. We fight a chronic illness. We battle the known and unknown. She is what her generation has dubbed a “chronic illness warrior.”

I hated this term at first, this identification with war. I wished we could find a more Zen approach to this: We are building up her immune system. I’m supporting her on her path to wellness. Her body is adjusting to this planet.

But Zen flew out the window when she was meandering peacefully across campus one minute and was rushed to the ER in an ambulance the next.

Her diagnoses are multiple and poorly understood. MCAS, PCOS, maybe POTS? A series of initials that has brought a host of doctors. Since high school we have worked with an immunologist, a primary care specialist, a dermatologist, acupuncturist, cardiologist, endocrinologist, therapist, gynecologist and dental specialist.

Her illness is not discriminating — it attacks any system, all organs, her joints and even the tendons that hold them together. I had to admit, we are fighting, not flowing.

Fortunately, Casey throws herself into the world, refusing to retreat from the plethora of possibilities it offers, hives be damned. Her modus operandi from an early age was to fight the tide.

One humid summer afternoon, years earlier, I visited an old friend in Massachusetts. The air in her back yard was so still I could hear each mosquito hover. The sound of our boys playing inside drifted out an open window, while Casey hummed as she arranged her dolls on a blanket on the thick grass. I breathed. Motherhood always felt like a marathon, the time with a friend the re-boot session before getting back on the trail. We’d already committed to getting everyone changed to bathing suits and into the pool once we’d caught up, but in the mean time we actually reclined on her lounge chairs talking.

Apparently, Casey decided she was hot. She marched past us to the deep end of the pool and threw herself in before either of us could register what she was doing. Her yellow dress ballooned around like a blooming rose before she slipped under water.

“I didn’t know she could swim,” my friend sputtered.

“She can’t,” I answered, as I leapt in after her.

As we recovered, wrapped in towels and catching our breath, I decided she needed swimming lessons.

A week later, back in California, the swim instructor suggested Casey was too young for lessons at the end of her first lesson.

“She’s really scared.” The teacher pointed to a scratch on her arm from Casey, who had been clinging to her fiercely. Casey eyed her angrily and tossed her goggles to the ground.

“That’s because she doesn’t know how to swim yet,” I answered. “But unfortunately, she jumps in anyway.”

We persevered.

Mornings at 10, the air still chilly, Casey bravely donned her polka-dot two piece and violet swimming cap. Half an hour later, having inhaled a gallon of chlorine water and her eyes swollen, she’d rest her head on my chest and sigh. But like Rocky from the corner of the boxing ring, she’d return. Hour after hour, day after day. From the doggie paddle to a beginner’s crawl, she soldiered on. A month later, she was deemed “water safe.”

Later, Casey swam laps every summer, beads of water splashing behind her on warm Sonoma afternoons. Swimming was one tenet of her complicated prescription for staying healthy. She moved through the pool with the same daunting determination she demonstrated with every challenge in life, from the backstroke to slam poetry competitions, from a painful liver biopsy to presenting her college research at a sociology conference.

Had her illness shaped her will? Honed it to be sharp enough to take on life’s challenges? Or was it the reverse — did she use the tenacity she was born with to contain the illness?

We faced the battles together, day by day. We shared our arsenal of weapons: pills and poetry, information and inclinations, hope and humor, medication and meditation, research and remedies. Our optimism rose and fell; that winter had been particularly tough.

My eyes returned to the picture she’s sent: a beautiful young woman, a cute dress, one of her besties next to her, another one holding the camera. No evidence of the physical insults she had tolerated in the past week.

The senior thesis she had just presented was titled, Women’s Experience of Biological disruption, from Chronic and Invisible Illnesses. She spoke from a place of authority.

Her illness was invisible most of the time. Invisible, as she pointed to the most salient points in her presentation. Invisible, as she wrote her last “letter from the editor,” for the college paper. Her peers and professors didn’t know if her joints were hurting or her pulse was racing, if her nausea was debilitating or there were hives on her belly.

She would cross the graduation stage with numerous cords around her shoulders — cords from an honor society, from the newspaper, from her major, her minor and her diverse commitments. She was ready to go. The world awaited.

The little girl who strode fully clothed into the deep end of the pool would now leap into the unknown future and ride the waves as they rose, and even as they crashed down on her hard. She would swim on. Swollen or not, rashy or clear, in pain and fatigued, there would be no surrender.

And I’d still be the mother up on the shore, my eyes scanning for danger, my heart praying for calm tides, waving and watching her go.

Follow this journey on Joanell’s site.

Getty image via Bicho_raro

Originally published: May 7, 2019
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