Battling Disease

Many people use the rhetoric of war to talk about illness. We "fight" the pain, "battle" the disease, "defeat" the contagion, and "struggle" with physical limitation. There is something almost consoling in the active, take-the-reins diction of war when we apply it to disease, to something that is in a large part out of our control. Using battle rhetoric offers the hope that we can "win," even if, as in war, we suffer some pain and loss. Collateral damage may happen in the form of scars or limps or weakened eyesight, but it might be worth it if it leads to defeating the big, bad enemy of whatever disease is assaulting us. In taking arms against a sea of troubles, we can feel empowered, as though we can have agency in the face of an uncontrollable virus or illness. The benefit of such war rhetoric is that is motivating; it can help inspire those suffering from diseases to "keep fighting" or to "soldier on." It can be like the inspiring words found in patriotic songs or recruiting ads: "Be Army strong." People who fight valiantly with their illnesses, like soldiers, can be brave, strong heroes, rather than weak, pitiful victims.

On the flip side, however, adopting the rhetoric of battle to describe illness also highlights this lack of control, as well as the pain and aftermath of the disease. My mom, for instance, suffers what the doctors call "attacks" that cause severe pain and have led to multiple near-death encounters. Here, the language of war emphasizes her inability to stop the disease from ravaging her body, just as it highlights the aftereffects of intense pain and difficult recovery. As with war, using the rhetoric of battle, glory, bravery, and strength is a coping mechanism, an attempt to make meaning out of something incomprehensible, unfair, frightening, and, at times, dehumanizing.

There is value in adopting the rhetoric of war to describe her disease. Her battle with NMO has shown her to be strong, determined, and downright inspirational, like the many heroes who have fought in wars to preserve the kind of life and values that Americans hold dear. At the same time, this language is limited. Her disease is not an enemy to be fought, killed, and defeated. That's not how her kind of autoimmune disease works. According to war terms, her body would be fighting itself, what Milton called an "intestine war" in Paradise Lost. No one wins in this kind of battle, and thinking about NMO or her own body as a battlefield, I think, diminishes her strength, her character, and her unique situation more than it elevates it.

Perhaps it would be more useful to think of her, her disease, and her body in its particularities, rather than as an abstraction, especially one as violent as war. So, on this Veteran's Day, in honor of her personal battle, I'll try to find new words to describe her experience. May they be words of peace.

"A Love Poem For My Mother's Body"

Her body is beautiful, wonderful, strong.
It flushes with life and energy.
Her legs remember every step they ran along the trail,
white with winter wear, black with stones, brown with trodden dirt.
Her arms remember every curl
to hold a wiggly baby, to press a brick in the wall of her new home, to swish a brush on canvas white.
Her lips purse to kiss little cheeks, recalling every kiss that came before, every word of love they ever framed.
Her skin is soft when I hold her hand, and her hair dances when she lifts up her chin.
She dances, still, and curls her fingers round the frets on the neck of her new guitar.
She swims in water warm, soft, still,
making little waves in sunlit pools.
Her warm, rich voice bubbles through her chest;
I hear myself in each reverberation.
She sings, blue skies in every note.
She breathes.

With less than a week until I defeat my marathon, please consider donating to find a cure for her disease. Please visit http://www.guthyjacksonfoundation.org/donate/tribute-donations, and be sure to write, "In honor of Patti Lellock" when you do.