Speaking from the 52%

My friend and I are talking about nearly-invisible lives most people don't see

In late 2015 my body finally gave. I didn’t know it then, but my failing health was actually deep body wisdom. 7.5 years in an abusive marriage, followed by the shocking abduction of my daughter, followed by 4.5 years navigating the systemic discrimination in our legal system as I fought for the right for my daughter and I to stay connected, all while pushing my body hard to stay afloat financially—was simply too much. So this body did what it took to save my life, which was to shut down.

It began with a strange flu that I didn’t quite recover from, then gradually-yet-swiftly snowballed into a mysterious and bewildering collapse of body systems—digestive, endocrine, and immune. Western medical doctors told me it was “autoimmune” and they were unable to help me. I was advised to “adapt my lifestyle.”

Since walking to my mailbox felt like hiking a mountain, my brain got so foggy I’d have trouble putting sentences together, I had chronic diarrhea, and was unable to work more than a couple hours a day, I found this medical advice outrageous.

In a matter of months my “lifestyle” of dancing three times a week + a job 30 hours/week + coaching clients + housecleaning jobs on weekends + the grueling part-time job of the court case itself + a vigorous daily yoga practice + full social life + going on barefoot solo backpacking trips in the Rockies to get away from it all…was reduced to an existence of chronic fatigue so severe I could barely leave my apartment and had to get my groceries delivered.

For the first couple years I avoided sharing anything more than the most necessary facts of my physical experience, even with those closest to me. I was afraid of being written off as a sick person in a society that sees the chronically ill as weak, dysfunctional, “making it up,” or likely to blame for their condition. I was afraid of the financial consequences of it being known that my capacity for work was unpredictable and limited. And I didn’t want to make things worse.

I was committed to not “empowering” illness by giving it my attention. That’s a nice-sounding spiritual idea, but the reality is anything but. I lived in ongoing physical distress, symptoms spiraling, and couldn’t afford the care I needed—all of which I largely hid due to positivity, fear, and not wanting to be a burden. Chronic illness is inherently isolating and not talking about it deepened my isolation.

Over the years I’ve shared increasingly openly about my experience of health issues, but I’ve never told the story of how trauma shut my body down. Or how it initiated me into a healing journey far deeper than the one I was already on.

Until now.

Because I want to introduce you to my friend, Tricia.

Tricia and I go back to the early 2000s, when we worked together on the pastoral team of our church. We had heart-to-heart conversations over tea and gathered a group of like-minded friends to explore co-creating a co-housing community together. After I read one of her manuscripts for her, it was Tricia who encouraged me to be a book editor. It was also a huge honor to be included on her first album, where she turned one of my earliest poems, “Waitress Sister” into this song.

Tricia is a writer, artist, theologian, and singer-songwriter. She’s an author of fiction, non-fiction, and memoir and has a PhD in theology. Tricia has worked as an international social justice advocate, run her own coastal landscaping business, developed a wonderful product (the first organic personal lube designed for bath and hot tub use!) and is an ordained deacon in the Episcopal Diocese of Oregon. She’s a super-talented, deeply intelligent, passionate, creative, thoughtful human.

Tricia also navigates chronic illness brought on by trauma and recently “came out” about her journey in hopes that doing so will be supportive to others, pointing out that roughly 52% of Americans live with chronic illness. In The Wolf At My Door series here on Substack, Tricia shares about her journey with lupus via short pieces full of her signature honesty, insight, and depth. Her stories inspired me to share my own with you here, in hopes that I too can spread some compassion and understanding, hopefully contributing to de-stigmatizing those who live with chronic illness.

I’ll be sharing one of Tricia’s pieces later this week. My story today is a prelude to Tricia’s story. I have a feeling you’ll appreciate the wisdom of her writing. And if you are or know someone in the 52%, you may find you have a new friend on the journey.

Tricia and I with my first kitten, Meli. Oceanside, Oregon 2004.