Finding My Way Through Sickness and Sadness with SPMS

I am hyperaware of the fragility of life. More specifically, the fragility of mine.

Secondary progressive multiple sclerosis is an autoimmune disease. My immune system eats away at the myelin sheath surrounding my nerves. My disease-modifying therapy is an immunosuppressant. This further weakens my immunity.

I have known this truth since my 2010 diagnosis. Yet, only lately have I felt its harsh ramifications. This is day 10 of house arrest. What began as a bad cold morphed within days into influenza type A, with fever, malaise, aches, fatigue, and incessant coughing. This flu’s virulent nature was no match for my body. Ten days, Tamiflu (oseltamivir), and several nebulizing treatments later, I still possess a chest cold. I knew I would be hit. I had no comprehension of how hard.

I cried childishly while feverish. In the hallucinatory heat, I yearned for my mom. I held my golden retriever and let the tears fall. Hours turned to days as my body fought. The flu virus elicited a hospital-acquired infection. Low immunity means my body is in check.

Lately, it seems to reside there. Precariously so. I cannot help but be acutely aware. How can the same body that spent summers sailing and winters skiing have trouble walking? The same body that spent hours dancing now sways involuntarily. What came naturally is now done with intention. My slurred speech leaves me with social anxiety. I become nervous when I cannot swallow. Both dysphagia and dysphasia vary in severity. The only certainty is their presence.

A quiet melancholy has settled in, and it’s a sadness only understood through loss. I grieve myself. I miss her. Yet each day I decide to find the pieces. My grief is hidden by sheer determination. It’s a will to survive, coupled with a demand to thrive. But the loss overwhelms my senses. They ache, yet I leave them exposed. I expose my eyes for beauty, my ears for a song, my touch for another, my smell for spring, and my taste for satiation.

I am vulnerable in this phase of discovery. Every day it takes more will to accommodate what MS has taken. Yet every day I receive gifts as only MS could bring. The duality never ceases to amaze and astound. Through grief and loss, I find my way.

The pathway is dimmed, yet I walk. I will find my way back to myself. Checkmate can wait.

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