Last Saturday, my Mom had a blast. She attended the 33rd Metro Detroit Stroll for Epilepsy™ at the Detroit Zoo, hosted by the Epilepsy Foundation of Michigan. She took great pleasure in snapping photos of teams that were present — some in purple shirts and others in full costume. And then, of course, she asked someone to snap a photo of her with the Stormtroopers that were there. They had the ability to make a blast, too, but of a different sort.
This gathering is so special. Through this event (and afterward), the Epilepsy Foundation of Michigan seeks to raise $198,000. Every dollar funds our mission and vision and ensures that no one faces epilepsy alone.
With this in mind, I’d like to share an excerpt from the book I’m currently writing. Beheld: A Spirituality of Kinship focuses on themes of connection, solidarity, and choice-of-one-another in community, and Part 1 concludes with a story from the Stroll.
And as I prepare to share that, I also want to offer an invitation: As you know, there is a great deal of economic turmoil right now, and along with it, uncertainty about how nonprofits will be impacted. We are in a strong position currently and just as committed as ever to this mission. But for all of these reasons, we could really use your help.
Would you like to get us over the finish line of that $198,000? Would you like to donate?
Beheld: A Spirituality of Kinship — The completion of Part 1
When we are embraced by choice, we are invited into a way of life. We become empowered to choose one another more freely and fully. Our intentions, actions, and commitments — our sacred acts of choosing — become spiritual practices. In these ways, we help to dismantle the barriers between us, whether cultural or self-imposed.
I am privileged to belong to a community that grounds me continually in these commitments. I lived with epilepsy in childhood, and today I serve as a staff member at the Epilepsy Foundation of Michigan. In this role, I’m honored to accompany people living with epilepsy, along with their family members and friends.
I have witnessed heartache as people navigate life changes and loss. I have watched people come alive in advocacy. I have listened as individuals voice their personal stories with vulnerability and bravery, and I have marveled at their resilience. I have celebrated with community members as they shed stigma and internalized ableism and step into strength, belonging, and empowerment. It is a gift to be invited into these relationships, and it is an honor to be shaped by them.
One in twenty-six people will be diagnosed with epilepsy at some point in their lifetime, making it more common than many realize.[1] Yet because of long histories of misunderstanding and suspicion, people with epilepsy have often been marginalized. While medicine and public awareness have advanced immensely and continue to improve, our collective history, both in this country and around the world, includes devastating chapters of institutionalization, forced sterilization, exclusion from schools and community spaces, and laws that once restricted marriage and employment. Our community has made vital strides in securing legal rights. And yet, the echoes of that history still linger, contributing to misunderstanding and discrimination today.
For all these reasons, a powerful shift occurs every time people with epilepsy move from isolation into shared kinship. Within our Epilepsy Foundation network, we joyfully proclaim a collective vision that no one faces epilepsy alone. I’ve had the great privilege of witnessing the transformation that unfolds when people feel supported and are then empowered to extend their own care to the wider community.
The Epilepsy Foundation of Michigan serves the entire geographical region of Michigan, and many of our community members cannot drive due to their epilepsy. For both reasons, we often provide programming and support groups virtually, so people can participate over distance.
But geographical distance does not deter people from developing deep bonds of kinship. Often, despite never meeting physically in person, community members connect for years over Zoom meetings and connectional phone calls. I remember two women who met in a virtual support group and then began watching movies in sync while talking over the phone. I recall a couple of community members who developed a friendship across distance and then traveled to each other to go grocery shopping together with their remaining SNAP benefits. A virtual friendship turned into a real-life visit when one woman asked her husband to drive her across several counties so she could help her friend fix an appliance. Weekly, in addition to bonding over epilepsy, one of our support groups – this one, all women – also connects through their love of the Detroit Tigers. These friendships are strong, even without shared, physical space. Then, when there are occasions to meet in person, it can feel like coming home to someone you’ve never met face to face.
Each year, we hold the Metro Detroit Stroll for Epilepsy™ at the Detroit Zoo, and approximately 2,000 people gather to honor and celebrate the epilepsy community. This event is our largest fundraiser, making it possible to offer nearly all our programming at no cost. But beyond the fundraising efforts, this event feels like a family reunion. There is a palpable sense that each person is among “my people.” Individuals from all walks of life come together, representing a wide range of stories, identities, and zip codes, but there is a shared sense of kinship and celebration. An individual or family can arrive at this event and feel in their bones, perhaps for the first time, that epilepsy does not have to be a marker of isolation, discrimination, or hopelessness. It can become the gathering center for a community of dignity, worth, and pride.
And so, I close with a memory from the Stroll that embodies this kinship.
I stood behind a table, ready to welcome participants and share the spread of flyers highlighting the Epilepsy Foundation of Michigan’s programs and services. From my vantage point, I had a lovely view.
In front of me, I saw many people visiting booths, enjoying snacks, and greeting one another. Many were wearing purple, the color of epilepsy awareness. Some were decked out in creative costumes or wore identical t-shirts designed to celebrate their Stroll teams. Children were plastered with face paint, and the DJ played music with a beat. Costumed characters were mingling with the crowd — some swishing light sabers in Star Wars costumes, and others dancing joyfully as Teenage Mutant Ninja Turtles. It was quite a scene.
But within a crowd, there are always people with names, and there are relationships that have history. Amid the bustle, I spotted two people I know very well. They weren’t side by side, but unbeknownst to them, they were in the same vicinity. They had never shared the same physical space before. Week after week, they participated in the same virtual support group, not even by video — but by phone. Most of our support groups migrated to Zoom during the Covid-19 pandemic, but that original support group used a conference call line. And they liked it that way.
So I moved from behind my table, and gesturing them together, I called out with joy,
“Steven! This is Allison!”[2]
I watched Steven practically run to Allison. He scooped her into an embrace, and they had a long hug of recognition. For about 40 seconds, they just held each other in gratitude for their friendship. Behind that hug were stories of resilience from moments when they feared they wouldn’t make it through. But they did, and in that hug, they knew it. One friend towering tall; another friend, petite, using a wheelchair. Epilepsy was no longer a dividing wall, a reality of barriers, or an occasion to shrink in fear.
Knit together in a community shaped by countless acts of choosing — saying yes, beholding, marveling — they had practiced solidarity with one another in times of joy and sorrow. They embodied what kinship looks like in action. And in their embrace, they bring us home to that very question:
Won’t you choose that which is choosing you?
[1] Centers for Disease Control and Prevention. “Epilepsy in Adults and Access to Care—United States, 2010.” Morbidity and Mortality Weekly Report 61, no. 45 (November 16, 2012): 909–913. https://www.cdc.gov/mmwr/pdf/wk/mm6145.pdf.
[2] I have changed both their names and am sharing this story with their permission.
Smuggling Grace 