Let’s talk about living with illness (I’ll start)

By Megan Winkelman

In my senior year of college I lived with my boyfriend, Adam, in a student residence at the northeast edge of Stanford’s sprawling campus. Our apartment, tucked into the back corner of the eighth and highest floor, offered an unobstructed view of the neighborhood: two identical housing complexes, a wilted community garden, several low bungalows occupied by families with children, and a small park with a jungle gym.

The jungle gym seemed to have been designed to amplify noise. From my room I could hear miniature body parts and plastic toys clang against the hollow metal. Teasing, mournful screams reverberated from the plastic tunnels. Children at play and children in agony sounded indistinguishable. Their playground antics were a welcome distraction for me, as I spent most of this year in bed, sick with what would ultimately be diagnosed as an autoimmune disease.

Sitting on our balcony, looking out over the neighborhood.

Sitting on our balcony, looking out over the neighborhood.

The faces of the mothers (always mothers, always alone) were lined with exhaustion, but they moved and laughed energetically.  They held their vitality as securely as they held their children, yelling: don’t eat the doggie food, drop that stick, sit still for one freaking minute! If their fatigue was a happy sacrifice, mine was unproductive, even selfish. As I watched, I wondered if I would ever be healthy enough to run after my own toddler or pull all-nighters with an infant.

By this time, Adam and I had been in love for five years. We moved in together before we knew how sick I would become. It turned out that without him I would have had to drop out of school. Some days Adam had to wash my hair and shave my legs for me. Raising my arms over my head was excruciating, my muscles burning as if I was at the end of an Olympian workout. Bending over to apply shaving cream left me nauseated for hours. Adam counted my morning and evening pills, labeled my urine samples, wrapped my hive-covered legs in wet towels, massaged noxious oils into my scalp to keep my hair loss at bay.

Our partnership was changed by these necessary acts. I was a feminist who needed a man, and he was a breadwinner who moonlighted as a live-in caretaker. To find structure and meaning in the overwhelming mess of new and uncomfortable experiences, we told, revised, and retold the story of our life together. We insulated ourselves from our fears by framing my ill health as a temporary plot twist within a grander adventure. Even when my doctors could offer no foreshadowing about our future, we mapped out my recovery in stories about where we would go and who we would become when I was better.

I call this look "convalescent chic."

I call this look “convalescent chic.”

These stories sustained me. Before getting sick, I thought that like the retelling of dreams, sharing anecdotes about illness was self-centered. I was wrong: suffering itself is uninteresting, but how humanity responds to suffering is breathtaking. As I began to recover, it was important to me that I not hide my experience of serious illness. When asked how I was, I tried to actually answer, to share my improvements, as well as the pains that lingered: my gratitudes as well as my fears.  This honesty was returned to me tenfold. Intimate stories of illness and disability began flooding in from colleagues, teachers, casual acquaintances, strangers on the bus, and even friends I’d known since nursery school. An urgent and profound relief characterized these exchanges. It became clear that keeping quiet about our imperfect bodies had only deepened our wounds, and we were desperate for a way out of the silence.

This is why I started Uprooted. The editorial board and I hope that the anthology and this blog will become a creative, communal response to the challenges of illness, especially as those challenges relate to gender, sexuality, and identity. We need your help! Share our site with those who might benefit from it or want to contribute. Tell us what stories we’re missing. Contact us about writing a blog post or submitting your work to the next edition. When illness shakes us up from within, it unearths the raw, real material of the most important stories we’ll ever tell.

Megan Winkelman

Megan Winkelman

Megan Winkelman's research and advocacy has focused on mental health stigma, patient narratives, and low-literacy populations, thanks to the support of the Dalai Lama Fellows Program, the Westly Foundation, and the Bay Area Inspire Award. After graduating from Stanford University with a BA in Human Biology, Honors in Feminist Studies, and an MA in Modern Thought and Literature, she moved to London and helped launch the It Gets Brighter Campaign, which collects and features video messages of hope from those living with mental illness. Winkelman is now a member of the University of California, San Francisco, School of Medicine’s Class of 2020.
Megan Winkelman

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5 thoughts on “Let’s talk about living with illness (I’ll start)

  1. This is so wonderful! I remember when you were first starting to think about this and I’m so pleased to see your writing online and glorious! Miss you friend and so proud of your perseverance and brilliance!

  2. Beautifully written. Isolation and the misunderstanding of dear friends and family of how disabilitating a disease can be makes this blog so empowering! I would like to know how I might contribute my story, which is a neurological degeneration one. Thank you for this gift.

  3. Jo, thank you for your thoughtful words. We would love for you to submit a blog post, or a submission for our second edition, or both! Message us through the contact page with your contribution or any questions about the process.

  4. Your story is so inspiring and really points out what it feels like to battle an invisable illness. I suffer from a couple different forms of Dysautonomia. I would love to share your story on my page. I shared my story and the support has been amazing so I stated a page to get everyone battling out of the shadows and spread awareness. Your so brave for doing this!

  5. Thank you, Laurie! Please message us on our “Contact” page with your website link so we can start exploring a collaboration.

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