The View from the In-Between
The “Squirrel” in the Incubator
In 1983, survival for a baby born three months early wasn’t a matter of advanced technology—it was a matter of “touch and go.” My family called me “Squirrel” because I was small enough to be carried in the palm of a hand. I spent my first days in an incubator, a glass-walled world of high oxygen and hope. +1
People often ask, “Where was God in that sterile room?” After serving as a hospital chaplain in the NICU, I’ve found a new way to understand that space. God was in the hands that changed my leads and the voices that whispered over my monitors. My Retinopathy of Prematurity (ROP) resulted in blindness in my right eye and lifelong nearsightedness, but it also left me with a deep conviction: God’s presence isn’t always a miracle cure; often, the Divine is found in the person standing bedside when things are “touch and go.” +1
The Scorekeeper’s View
Growing up as a person with a visual disability means navigating a world that isn’t quite built for you. While other kids had standard notebooks, I had thick-lined paper and 20/20 pens that wrote bold and dark.
The “in-between” felt most lonely in the gymnasium. While my peers played dodgeball, I was tucked away on the sidelines as the designated scorekeeper. The school was afraid of a stray ball hitting my head, so they “protected” me into isolation. I felt singled out, but it was there, on the sidelines, that I began to develop a different perspective. I wasn’t just watching the game; I was learning to observe the dynamics of the group from the edge. I didn’t call it “grit” then—I just called it determination.
The Surrender of the Keys
For many, the ultimate symbol of independence is the driver’s license. For me, it was a barrier I fought to keep until a terrifying afternoon during my pastoral internship. After nearly hitting five bicyclists on the road to my condo, I realized that my determination had become a danger to others.
Giving up my license before the age of 30 was one of the hardest deaths I’ve had to die. It felt like the end of the world. Yet, in the economy of God’s grace, that loss became a bridge. When I sit with a congregant who is weeping because they can no longer live alone or drive to the grocery store, I don’t offer platitudes. I offer a shared seat in the “in-between.” I know the sting of losing independence, and I know that while it isn’t the end of the world, it certainly feels like it.
The Gift of the Margin
I have long come to terms with the fact that I will not be “healed” of my blindness on this side of the resurrection. I’ll be honest: I wish I were. I wish my eyes worked with the ease that most people take for granted. But I don’t blame our Creator for the way the blood vessels grew in my retinas back in that 1983 incubator.
Some things in this life simply are. They are messy, they are permanent, and they don’t fit into nice, neat, tidy explanations. Just because a person with a disability doesn’t “overcome” their ailment doesn’t mean they are less than. Our society is obsessed with the “triumph” story, but the Gospel is often found in the people who carry the light exactly as they are. +2
Seeing What Others Overlook
In many ways, my ROP is a form of God’s grace. Because I live in the “in-between,” I have developed a unique vantage point:
- I notice the margins: Because I spent my childhood on the sidelines, my eyes are trained to look for the person standing alone at the back of the fellowship hall.
- I value accessibility: I don’t fight for justice and inclusion because it’s a “trend,” but because I know that accessibility is theological, not optional.
- I lead with empathy: My leadership is rooted in the reality that we all rely on the “nurses” and siblings in faith God places in our lives.
I am a pastor not despite my low vision, but through a life that has been fundamentally shaped by it. My limitation didn’t disqualify me from my calling; it became the very place where my calling was born.
A Question for Your Journey
Low Vision Month is about awareness, but for those of us living it, it’s about integration. We all have “incubators” in our stories—places of survival that left us with permanent marks we didn’t ask for. +1
