‘Astonishing’ Acts of Feminism Throughout My Journey With CF

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by Nicole Kohr |

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finding joy in chronic illness | Cystic Fibrosis News Today | A graphic depicting a woman on a stage with the words

In the musical “Little Women,” each of the four March sisters has an artistic talent. Jo March’s song “Astonishing,” a feminist lament about her ever-changing path toward writing, is particularly moving. It reminds me of my struggles as a woman with cystic fibrosis (CF).

“I’ll shout and start a riot”

Growing up with a single mother and widowed grandmother, I was surrounded by strong women. My grandmother’s idea of rioting was more literal. She was blunt in her strength, often yelling at people or guilting them into action. “If I don’t scream, nothing gets done,” she’d insist.

My mother was the opposite. She had a strategic, quiet strength and used her people-reading skills to manipulate the situation. “I’d rather ask for forgiveness than permission,” she’d whisper.

Watching these two women move mountains made my inner feminist catch fire at a very young age — but our journey wasn’t always supported.

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Is Gender Bias in Healthcare Shortening My Life?

Doctors didn’t believe my mother when she desperately sought a diagnosis for me as a baby, a child whose cough and salty sweat were textbook CF symptoms. Perhaps it was her young age that made doctors invalidate her concerns, or her newness to motherhood.

“Just suction her nose better,” one doctor would suggest.

“Women panic so easily,” another doctor would utter under his breath.

The biases, however, didn’t stop my mom from seeking second, third, and fourth opinions. In fact, her willingness led to my diagnosis, ironically, by a female doctor. Still, the initial doctors’ statements hardened me a bit.

“And I don’t know how to proceed”

On the flip side, there’s a time and a place for a riot. A two-week stay in an isolated hospital room where I received IV-infused antibiotics was not one of them. Called “tuneups,” those hospital stays were frequent, and I didn’t want to make enemies with the people who cared for me. “I won’t complain, a smile sustain,” I’d repeat to myself as a resident attempted a fourth blood draw. I noticed an impatient and emotional girl received worse care than a sweet and tolerant girl. Customer service within a hospital setting shouldn’t be affected by a patient or caregiver’s attitude, but it’s human nature.

While I brewed within my survival technique and buried feelings of resentment, my mom continued advocating behind the scenes. Different strokes, or in this case, types of feminism, for different folks.

I will be fearless/ Surrendering modesty and grace”

According to old movies and magazines, as a woman, I should be conservative and engage in ladylike conversation. Unfortunately, neither modesty nor grace made it into my central programming. I don’t blame it on a lack of effort, though. I blame my CF and the theatrical environments that encouraged humor over class.

For example, when I was diagnosed with CF at age 5, my mucus and I formed a toxic relationship. Round-the-clock sneezing and coughing were so fatiguing that my attempts at covering my germs fell by the wayside. Tissues were thrown around my room like confetti, an environment that my mom nicknamed “the pigsty.” Flirting with boys was impossible when my inevitably raspy voice would blossom into a sputum sample. Nebulized medications made my breath smell disgusting. My Miley Cyrus perfume failed to disguise the odor of each fermenting infection, and my small talk often included my poop.

Theater classes only worsened my behavior. Exaggeration is required on stage, as is the absence of embarrassment. Between the two influences, I drifted further from society’s expectations for women and closer to a MiraLAX-dependent circus clown. The worsening CF-related side effects weren’t my fault. My response was simply a coping mechanism, but society never made room for that coping mechanism. At times, it felt as if I were unqualified to be a girl.

“I may be small/ But I’ve got giant plans”

Despite my never fitting into a fixed box, my mom and grandmother made me believe in feminism. The rude things doctors told my mom are a product of a dying culture. Still, only in recent years have I let go of the belief that I must be a smiley and tolerant patient. I speak my mind without worrying about being a hated woman.

“Little Women” cultivated an audience of feminists by building strong yet flawed female characters. Peace and tolerance were less damaging to my vitals, but that desire to fight is often warranted in my adult life. Hence, I’ll build on my strong but flawed character and embrace the equality that lives within feminism. Go on, ladies. Talk about your bowel movements. Cause a riot.

People will find you astonishing.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.


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