My body makes all my decisions now

Can we create a life that supports who we actually are, regardless of what norms we interrupt?

This essay was originally published on Healing is My Special Interest, a beautiful Substack by D.L. Mayfield. It’s time to share it here. Enjoy!

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My body makes all my decisions now.

If it works for her, then I’m in. If she signals otherwise, then I have some adjustments to make. 

Some will call this a privileged luxury and they’re probably right. But the alternative was four decades of dragging around a body full of chaos while simultaneously rarely listening to it. 

I grew up in the cornfields of midwest Ohio. The daughter of a nurse-turned-stay-at-home-mom and a United Methodist pastor father, I took my unassigned job as third parent of my three younger siblings quite seriously. I was your typical quiet overachiever girl in school. I did well academically, enjoyed a couple sports, and awkwardly navigated a group of friends, like I assumed every other kid did too. Life felt a bit like a script to memorize. One that I was determined to perfect.

Until recently, my body was a transportation system for my mind. She started to get a little noisy my senior year. I was diagnosed with fibromyalgia at the age of 17 after odd pain developed during volleyball tryouts. Knowing what I know now, I can’t believe I didn’t see that as a flashing neon sign to dig a little deeper. But, hey, I was a senior determined to stay on track with all my life plans.

Fast forward to my 30s. I’m married to my college sweetheart, living in Alaska, serving as a United Methodist pastor myself, and welcoming our daughter and then son into the world. As I gain more responsibility in work and life, my body tries to get my attention through an anxiety disorder. When I wouldn’t listen, the panic attacks start while I’m preaching on Sunday mornings. An annoyance to my busy life, I try to learn how to stop it all, but it never occurs to me to look for a larger context as to why my body is so on edge.

Then the pandemic arrives in 2020. Like so many others, this season hand-delivers wild invitations to unravel what isn’t working. To face all that’s been kept under wraps. I burn out hard at work and quit my job to go on personal leave. Three weeks later, my youngest brother unexpectedly passes away. During this quiet and isolating time of grief and personal leave, I process it by writing and publishing a poetry memoir on grief and love. In the next year, I am diagnosed with ADHD, autism and OCD. 

It is...a lot. 

There are days I imagine myself to be a fighter. That energy feels good. I fight for myself this year.

But honestly? It is more of an unraveling. I get really still inside my life and feel everything that emerges. I look right at it, without hiding. I finally ask the questions that have been biting my ankles for years. I slowly turn around and meet me. I think I cry more this past year than my entire life combined. And it feels good in my body. So much pain unravels and loosens. 

A year later — I feel lighter. Old hurts and fears are healing. New identities are emerging. Beautiful work calls my name. The extra time with my favorite people has been restorative. There’s a knowing in my being I have more access to. 

Seeing myself in stories on the internet brings me home to myself. I’m not broken. I’m not too much. I don’t have to be so afraid. I walk, cry, write, go to therapy, and cry that entire year. Shame dissolves as I reframe everything I understand about myself in this life.

My soul walks with a limp but she can still dance.

I make the decision to step back into full-time ministry after a year and a half of leave. But only if I can figure out how to be my fullest self. In our tradition, a bishop and group of district superintendents match pastors with local contexts. I tell them, “I need to be in a context where they’re willing to understand me as a fully out autistic pastor. I cannot hide ever again.”

To my delight, they understand and we move to Salem, Oregon soon after. I disclose my autistic story to my leadership team and we start experimenting with accommodations that enable me to show up to the necessary work while ensuring my body has what it needs to function as best I can. My experiment is underway: Can I create a life that supports who I actually am, regardless of what norms I interrupt?

This essay might convey that it was an expedient process with deep confidence. It was anything but. 

Writing poetry helps me sort out jumbled emotions and looking back on that season, I see the deep fear. please believe me / this person i’ve been / is a person i learned / a person you could understand. Most poems dance around the absolute terror that no one will believe me. I spent years honing my neurotypical mask and now I am intentionally dislodging it. Terrifying.

But there is no turning back now. No more hiding in the chaotic depths of my internal overwhelm. My body makes my decisions now and she is quite clear. We feel relief, healing, alignment, and freedom when we tell the truth. So that’s what we’re doing.

One step at a time

I’ve long seen neurodivergent traits in our kids but missed them in myself. The more I learn, the more my experiment grows to include my immediate family. Can we create a life that supports who we actually are, regardless of what norms we interrupt? Here’s what we’re learning so far.

Permission

We’ve made it normal in our home to give ourselves permission to interrupt expectations. Each day we unravel neurotypical expectations a little bit more. We question the assumptions others make about what we should or should not be doing. What if that’s not actually true for neurodivergent humans? Normalizing this is a game changer. Everything’s up for debate. 

Boundaries 

We’re slowly learning limits are actually okay. They free us to thrive, instead of constantly feeling behind. We know down time is crucial for our brains and bodies to recover and restore themselves, so we’re unapologetic about our low demand rhythm as a family. We don’t typically commit to more than one or two outings on a weekend. We build in time to decompress before and after. My work people have been incredibly understanding when I need to reschedule meetings or work from home. Before, I would have pushed through to keep up with what I sensed others expected. Now, I prioritize what my body needs and shocker -- the work still gets done. 

Celebrating our superpowers

Being autistic is what makes me a good pastor to people. I feel deeply with people when they walk roads of grief and joy. I see patterns in the church system that help me arrange people so we can make a difference in the community. My brain finds meaning in everything and I help others see what they might miss. Of course, there’s plenty in the job that doesn’t come intuitively. I’ve engaged decades of neurotypical observation to become a solid communicator, deep listener, and user of many social scripts. The danger came when I didn’t know the framework I lived within. The sensory overload, social anxiety, unspoken assumptions, OCD, panic attacks, deep sensitivity, conflict confusion, and executive function just about did me in. But now? Knowing why changes everything. It’s still hard, but far more manageable.

Changing the narrative

I share about my autism diagnosis in a sermon last fall. Halfway through, a visitor in the front row raises his hand in the middle of my sermon and says, “I’m autistic too!” It’s a beautiful moment of connection. I mention autism fairly regularly and every single time, someone tells me after worship how much it means to them to know they or someone they love are welcome in this space. It’s still wild to me that all I’m trying to do is live my one life and the small movements I make set others free too. 

One day, I ask the kids in our church about their dreams for our space. One of them mentions a sensory room. One of my brand new autistic friends takes note of this during worship. My friend says the place he works has an extra grant for a sensory room and they’d like to donate it to us! A few months later, we are celebrating a brand new sensory room for the neurodivergent faith community in Salem, Oregon! 

I ache for people to believe all that I hold inside. This poem pours out the day after I tell the church about being autistic: 

i stood up yesterday
and told them the truth
my body hid in plain sight
and they didn’t reject me
like my shame convinced me they would

instead they listened
and loved
and blessed
and hugged
and cried

turns out love is
always ready
to show shame
what’s actually true

they believed me

The very thing I’ve shamed myself for is now the thing that’s setting me free. And maybe some others too. Wild, huh? 

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