Content to Fight for Every Step
Growing up with Arnold Chiari Malformation (ACM) and a Posterior Fossa Arachnoid Cyst (PFAC) meant fighting battles I couldn’t even recognize, much less explain. I was born into a body shaped by conditions that had long been there but were invisible to everyone, including myself. These conditions pressed on my brain, my spine, and my sense of reality, causing pain that I thought was just part of life.
The ACM caused intense pressure on my brain and spine, leading to complications like my clubbed feet, spina bifida occulta, and spinal curvatures that would later result in a painful spinal fusion. Meanwhile, the arachnoid cyst created additional pressure, leading to moments of intense brain fog, sudden shutdowns, and headaches so severe that they felt like my skull was about to burst.
But I didn’t know any of this. How could I? It was just how I lived. There wasn’t a point of comparison. I didn’t know that the fog in my mind, the choking sensations, and the searing pain weren’t part of every child’s life. For me, these were the same as breathing or blinking—just something I endured, something I assumed everyone else did too.
The First Time I Realized
I think the first time I realized people didn’t believe my symptoms was back in grade school—kindergarten or first grade. I was sent home because I was choking so badly I could hardly stand. It wasn’t the first time it had happened, but this time, the disbelief struck deep. I remember Dr. Fishbaugh, our family doctor, checking me out and, in front of my mother, telling her that I had probably made it up to get out of school. Hearing those words didn’t just sting—they made me question myself. If the doctor didn’t believe me, if my own mother accepted his words, what could I say?
I was taken home and punished for lying, for making up what I knew to be true—that I had been choking. But what I didn’t know at the time was that my brain stem, under pressure from the ACM and the cyst, was literally being pushed into my throat. I wasn’t making it up. I wasn’t pretending. I was suffocating on my own body, but no one could see it, so it became easier for others to assume I was exaggerating. And in some ways, I began to internalize that disbelief.
Hiding in Plain Sight
As a child, the only visible difference was my feet. The clubbed feet became an easy target, something others could see and understand, even though they didn’t grasp the full picture of what I was living with. I let people focus on that, because the truth was, I didn’t know how to explain the rest. The brain fog, the unexplained pain in my spine, the pressure that made my skull feel like it would explode—all of that felt too abstract. I didn’t even have the words for it myself. So, I kept quiet what was normal to me.
As the years went on, I learned to hide my symptoms. Not because I wanted to, but because I had been taught—consciously or subconsciously—that no one would believe me anyway. Even when the pain grew worse, even when my body gave out on me in moments I couldn’t control, I stayed quiet. And over time, the part of me that might have spoken up simply stopped. It became easier to accept the world’s assumptions than to fight for something no one else could see.
A Life of Quiet Sacrifices
It wasn’t until years later that I began to understand how much I had been sacrificing without even realizing it. Every step I took, every breath, every moment was shaped by the pressure in my brain and spine, by the conditions that ruled my body without my consent. But I didn’t think of it as a fight because I didn’t know any different. I didn’t know that my life was a constant negotiation with pain and limitations—until I started losing the things that made me feel whole.
I think about the moment in my woodworking shop, where I lost control of my body for just a few seconds. That spike in pressure from the cyst and the malformation caused me to shut down, my mind fogging so completely that I laid my upper body on a running table saw. When I came back to myself, I was terrified—not because I had nearly been hurt, but because I realized how fragile my control was. I couldn’t even trust my own body in a moment of peace. That’s when I started to understand that my life was full of quiet losses. The things I loved could be taken from me at any moment, not because of a decision, but because my body would decide it for me.
The Grief I Never Expected
When that PA explained my conditions to me, my first question was about my sibling—the sibling I never had the chance to know. My mother had miscarried just two years after I was born, and I had always wondered. The PA’s expression shifted before she even spoke, and in that instant, I knew. Growing up with these health issues, you become hyper-aware of other people’s emotions and body language. You notice the subtleties because so much of your life is about managing unseen pain.
The PA confirmed my unspoken fear: my sibling had likely died from the same complications that nearly claimed my life. The ACM and PFAC had shaped my life, and now I knew they had ended someone else’s before it even began. I was left in shock, trying to process it all. My wife sat beside me, mostly speechless, though she asked a few questions. But inside, my thoughts were consumed with my parents, especially my mother.
My mother had died without ever knowing the full truth of my health. She had carried guilt for years, believing she had caused the miscarriage by moving a washing machine. But it wasn’t her fault—it was never her fault. I grieve for her, knowing she carried that guilt to her grave. I grieve for the sibling I never met, someone I feel a strange and unexplainable connection to, as if we had shared something profound before I even knew it.
A Strange Grief
What I struggle with most is a strange grief—a grief for someone who never had the chance to live. I think about what might have been if they had survived, if we had shared this burden together. Would we have understood each other? Could we have helped one another in ways no one else could? And then, the guilt sets in. I wonder if their early passing spared them from the pain I’ve endured. But no life is better without life. I know that.
Yet, these thoughts linger. There’s no book, no guide on how to grieve for something you never had—like health. How do you grieve for a life that could have been, for the potential you couldn’t reach, for the things you’ll never have because of conditions that were there before you even knew yourself? It’s not self-pity. It’s a quiet mourning for the unspoken losses.
Faith Through It All
Through all of this, my strength hasn’t come from people’s understanding. It has come from my faith in Jehovah, who has always seen the battle I’ve fought. He knows how we are formed, as Psalm 103:14 says, “For he well knows how we are formed, remembering that we are dust.” Jehovah knows the limits of my body, my pain, and the quiet sacrifices I’ve made, and in that knowledge, I find comfort.
Jehovah doesn’t ask me to be more than I can be. He doesn’t expect me to fight a battle without giving me the strength to endure it. And even though the world may not see what I’ve carried, Jehovah has always seen it. That’s the strength that keeps me moving forward.
