The Invisible Weight of Symptom After Symptom
As a child, the only thing I knew about my body that was “different” was my clubbed feet. That was visible, something people could see and point to, something I could focus on as the root of my challenges. But even then, I didn’t know that my feet were just one part of a much larger, more complex picture.
I didn’t know what Arnold Chiari Malformation (ACM) was. I didn’t know about the Posterior Fossa Arachnoid Cyst (PFAC). And I certainly didn’t know how these conditions would come to affect nearly every part of my life—mentally, emotionally, and physically. What I thought was normal turned out to be something else entirely.
The Invisible Struggles
I spent most of my childhood and young adulthood dealing with symptoms I didn’t have names for. Brain fog, headaches, dizziness—none of these things seemed unusual to me because they were my normal. My body felt like it was supposed to feel that way because that’s all I had ever known.
One of the most difficult symptoms to explain, even now, is the way I would suddenly lose my balance. I could be walking, or just standing still, and out of nowhere, my body would decide it didn’t know how to stand up anymore. One minute I’d be fine, and the next, I’d be on the ground. These drop attacks would happen without warning, but they became something I accepted. How could I know that not everyone’s body betrayed them like that?
As I got older, some of these symptoms became more severe. For instance, I developed photosensitivity and audio sensitivity that would trigger what I later learned were brain seizures. I didn’t know that’s what was happening at the time. I just knew that certain lights or sounds would make me feel like I was shutting down, like my brain was short-circuiting.
The Moments No One Noticed
There were moments—many of them—when I would “phase out.” I remember one time being out on the water, fishing. I don’t know if we were in Canada or Michigan, but I remember a sudden shift. My mind went blank. I phased out, but no one noticed. I don’t know if it was because it was so sudden, or if it was because nobody was paying attention. To the outside world, I probably looked fine—just staring off into the distance or lost in thought. But inside, something was happening that I couldn’t explain. I couldn’t understand it then, and neither could anyone else.
It’s not that I didn’t experience symptoms like these as a child—I did. I just didn’t have the language or the understanding to explain what was happening to me. Brain seizures, audio and photo sensitivity, random moments of mental shutdown—they were all part of the same invisible world I lived in, but one I couldn’t describe.
The Kidney Infection Incident
One of the most striking examples of how deeply I accepted pain and discomfort as “normal” was the time I had a kidney infection. I had been urinating blood for days, maybe weeks. But to me, that wasn’t something I thought was wrong. It wasn’t something I thought to complain about. By second grade, I had already learned to accept whatever my body threw at me without question.
My mother found out about the infection only because she noticed I had been sleeping too much. She took me to the doctor because she was worried about my exhaustion—not because I had told her anything about the blood. In my mind, there was no need to mention it. I had accepted that as just another part of life. I didn’t see anything wrong with it.
Post-Surgery and the Drop in Drop Attacks
After my decompression surgery in 2009, some things improved, at least on the surface. The drop attacks that had plagued me for so long became far less frequent. They weren’t gone entirely, but they were no longer a constant threat. This reduction brought some relief, but there were still many symptoms left to navigate.
The truth is, even after surgery, I had already spent decades living in a body that I didn’t fully understand. Surgery didn’t change the fact that my brain had been shaped by years of unrecognized and misunderstood symptoms. The neurological damage was there, and though it was managed, it wasn’t going away.
Misunderstanding My Own Body
For most of my life, I didn’t realize how much I had been misunderstanding my own body. The symptoms I lived with every day—the headaches, dizziness, random collapses, brain fog, sudden mental shut downs—they were just normal to me. I didn’t understand that my pain, my disorientation, and my discomfort were not normal. How could I? No one had ever told me what “normal” was supposed to feel like.
The problem was that no one else seemed to understand either. Doctors, teachers, and even family members couldn’t see what I was going through, so they assumed I was fine. Even worse, they sometimes believed I was making it up. When you’re a child, and a doctor tells you in front of your mother that you’re faking it—that you’re just trying to get out of school—you start to question yourself.
