Our Body's Stories

Only we can know

My right eye is larger than my left eye.

Wait. It’s probably more accurate to say:

My left eye is smaller than my right eye. It’s the one that I think is affected.

I noticed this when I began looking at family pictures after my craniotomy. It was a right parietal lobe tumor, sort of the middle part of the right side of your head a couple inches above your ear. My tumor was 7cm, so take that inch above your ear and add almost another after that and you’ll be at the bottom part of my incision that wraps like a C around my head from there.

When Gideon was younger, he walked behind me while I sat on the couch and asked, “Why is there a C on your head, Daddy?”

The entrance to the brain was through the right side of my skull, and my motor cortex and a bundle of optical nerves were sort of in the way. Given that location, my sensorimotor deficits affect almost exclusively the left side of my body.

I suppose it’s possible that my eyes have always been different sizes–I hear that’s common, but my left eye also gets puffy pretty often and doesn’t open quite as wide as the right. It seems like a tumor thing to me, but I’m no MD.

I notice my smaller left eye often because I make a ton of short-form video content online, so I’m regularly staring at myself while I add captions or trim videos.

I’m regularly frustrated with my body. From my weird gait when walking, how my left hand will grasp things and carry them around without my conscious awareness—why am I holding this napkin? And my complete lack of sensory awareness when walking through doorframes. I often slam into them, smacking my left shoulder or stubbing my left toes–these are death by a thousand paper cuts.

“There you are, you son of a bitch,” I think when I stare back at myself and recognize those missized eyes.

My eye doctor is fascinated by my brain tumor. He’s a good dude, so no shade, but that guy shines that light in my eyes for quite a while, seeing what he can see. At the last eye exam, we talked about my peripheral vision loss before the tumor was removed because it was pressing on that optical nerve bundle. I suppose not every patient is interested in discussing optical nerves and the occipital lobe.

My eyes are in good health, at any rate, different sizes or not.

I’m becoming mindful that after this post, you all will be looking.

I was in a research meeting with 40- or 50-some participants last week–physicians, researchers, pharma, FDA; people in the room. The topic brought me immediately to memories of an inpatient stay I did at the brain trauma unit at that rehab hospital. I love my patient advocacy work, but it will never not be strange to have lived the experience that is the meeting topic for a room full of bright minds. My subjective experience collides with clinical opinions and literature reviews. What those rooms can’t capture is the feeling of your body paralyzed on one side, slowly graduating to movement, to stretches, to steps, to walkers, then canes.

The topic was neurocognitive exams.

I had one in a hospital gown in a locked brain trauma unit by a distant clinician who didn’t make eye contact with me.

Maybe for the better, I bet he would have noticed my smaller left eye.

I guess what I’m saying is that our bodies tell stories that only we can know.