As an Unlikely Warrior, I Must Be Genuine About My SPMS

I am the unlikeliest of warriors. Being called one makes me a little uncomfortable. While I appreciate the sentiment, I feel unworthy of the title.

A warrior chooses to battle independent of circumstance. I do so because it is my only option. Multiple sclerosis calls me to fight. Perhaps in its absence, I would display cowardice.

Someone asked what my secret to life with MS is. How was I able to work and volunteer, and remain motivated, happy, married, and hopeful? I began to answer, but my response seemed rote.

I quieted myself. This person, who has progressive MS, deserved more than an autopilot response. They had earned my truth. And while the scripted narrative in my initial answer was factual, it wasn’t the entirety of my reality.

The truth is that there can be beauty in vulnerability. Reciprocity in exposing these vulnerabilities is powerful. As we share with others, we liberate them to feel safe in doing the same. And at that moment, I wanted to give more. I owe as much to them as I do myself. I felt a need to unfurl the bow I tie so neatly around my disease and the ways I manage it.

There is nothing rote about multiple sclerosis. No bow is large enough to tie around the innumerable side effects and symptomatology. Neat and orderly are nowhere in sight. MS is messy and unpredictable, and I manage in kind.

This unlikely warrior has no bag of tricks. No ace in the hole. No secret sauce. I try. I fail. Then I try again.

I curse the side effects and symptomatology of multiple sclerosis. I lie on the grass. I gaze up as palm trees sway gently in the ocean breeze. I wish I could move as effortlessly. I am envious of their fluidity. And while I have never prayed for my MS to go away, I have hoped it would be more merciful.

I am fearless when I am alone in the dark. I remove the mask of false bravado. I allow my tears to flow and my fears to mount. I sit with anxiety. Like a vampire, my fears play in the night and vanish in the light of dawn. I dry my tears, ease my fears, and soothe my anxiety.

This unlikely warrior picks up her mask and prepares for a new day.

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