On Invisibility and Interior Glimpses

Upon learning that I have MS, others often extort some iteration of:

“I’d never’ve known from looking at you!”

“You look great! You must be doing well.”

“You don’t look sick…”

I acknowledge the complementary subtext of such statements, ignoring the psychological zing it triggers, graciously thanking my interlocutor while fighting the urge to sardonically snap, “looks can be deceiving.”

The reality is, much of the burden of multiple sclerosis is veiled to the naked eye. Neurologists and medical professionals know what signs to look for. Caretakers and loved ones attune their observations to the signals of autoimmune hurdles. But, for many who live with MS, the disruptive nature of the disease exists as a host of invisible symptoms. 

You cannot look at me and see the incessant burning in my left leg or the intermittent tingling in my non-dominant arm or the slash of emptiness through my field of vision. You cannot feel the numbness that encroaches my face when energy is overexerted or view the fog of fatigue through which I move. You don’t catch sight of my migraines. You cannot witness the cognitive delays that slow my processing speed, trip my brain power, and snatch my mental footing. 

Unlike the signs of MS-derived physical disability, the disease largely only shows itself on the interior landscape. The damage occurs inside my central nervous system, eating away at the grey matter and disrupting daily functioning. A wily autoimmune disease, MS causes my immune system to attack my own body, leading to inflammation and demyelination (disintegration of the fatty protective sheath that encases each nerve cell). Subsequently, white matter lesions form in the brain and spine, often resulting in interrupted communication between nerve axons and neurological commands.

It’s a vicious reality, one that is difficult to communicate to others. It has taken me years to find the words, let alone the comfortability, of talking about a phenomena so intangible. It’s much easier to lean into the cloak of invisibility, donning an exterior facade of “doing okay.” 

But maintaining that mask isn’t sustainable. 

In fact, when faced with the MRI-obtained visual evidence of disease activity, that lived inauthenticity becomes a detriment to one's mental health. Because, even though the brain damage isn’t visible in pedestrian settings, it can be viewed by gliding through an MRI machine, procuring magnetic resonance imaging of the skull’s internal state.

The first time I saw my brain on a screen, I was frozen in a confounded stupor. Something about this picture told the neurologist that I had multiple sclerosis, but I didn’t know what. Like the shadows on the walls of Plato’s cave, every glimpse of greyscale imagery looked like a terrifying monster about to tear me to shreds. My neurologist at the time must have explained to me what he was looking for, but none of it registered. He likely explained it again upon receiving another MRI six months later. I can’t recall. The only message that imprinted on me was that more lesions had appeared. It wasn’t until receiving a third MRI and an explanation from a new neurologist that I started to understand the story told by the pixelated scans projected on the doctor’s computer screen.

Comprehension metamorphosed into grief. Until then, the lesions were relegated to a distanced, theoretical lockbox. Theory transformed into a hard-hitting reality with medical acclimation. Looking at the MRI scans, I learned to identify the first few lesions, then the handful that appeared shortly thereafter, then the numerous flares that proliferated throughout my grey matter, too numerous to quantify. 

Luckily, with aggressive relapse treatment, my neurologist and I were able to stop some of the disease activity before inflammation turned into permanent wreckage. The wondrous act of remyelination occurred with early-stage lesions, restoring what was ravaged into a state of functionality. In other cases, the damage was done, turning active lesions into permanent “black holes,” instances of irreparable demyelination, forever to grace the landscape of my brain scans.

With time and exposure, I habituated myself to facing my lesioned brain on a computer monitor. There remains a glimmer of anticipatory grief, a holding of breath as the test results load on the screen. I feel the tension collectively when viewing MRI results with others, but it also becomes a way to share intimacy, to foster vulnerable connection. My sister, having only witnessed the extent of my disease from a distance, could finally behold the imprint of illness on my life, saying “I knew there were lesions in your brain, but I had no idea it was that many…” The picture was worth far more than 1,000 words. The relationship nurturing that ensued is priceless.

In this way, I have found unexpected power in wielding brain scans. Radiology report comprehension has become a superpower. Whether helping loved ones make sense of their first brain scans or sharing my innermost cells with a compassionate confidante, the MRI makes the invisible seen, transforming scars into a gift to share with others.