Disease and the Genealogy of Suffering

How multiple sclerosis has pulled me and my sister apart and brought us together

Photo by willsantt from Pexels

Slumped over like a question mark, my sister shuffles across the first floor of her house. Her feet drag and her legs collapse beneath her from time to time, leaving her in a crumpled pile. Once in a while, her boyfriend or her 15-year-old daughter finds her, and she can’t recall how long she’s been lying there.

She can no longer lace her fingers around a glass of water and bring it to her lips. Her right hand flutters like a bird with a broken wing, unable to lift itself and sustain its own weight.

Yesterday, my sister sent me an Edible Arrangements bouquet for my birthday. She addressed it to an apartment I moved out of three years ago. I didn’t tell her about her mistake.

My sister is 36 years old.

Multiple Sclerosis (MS) is a disease of the central nervous system. It disrupts the connection between your brain and your body. Symptoms range from difficulty walking and thinking to weakness and fatigue. My sister has a version called Relapsing-Remitting MS, meaning she experiences unpredictable relapses in her symptoms followed by periods of remission and relief. This relapse has lasted four months so far.

She’s been out of work since the beginning of her relapse. “I can’t go back to work,” she said to me on the phone yesterday. “I can’t go back to work and be stupid. I can’t go back to work when I can’t even type.”

She’s fallen between the cracks in the health and insurance systems here in the US. Both her primary care provider and neurologist refuse to sign the paperwork required for her to receive short-term disability payments during her relapse.

Her primary care provider says, “I’m a nurse practitioner and don’t know anything about MS, so I don’t feel right filling it out.” The neurologist says, “You’re an office worker and sit at a desk all day and should be able to go back to work. Plus, your primary care provider should complete the paperwork.” They point fingers at one another, deadlocked in disagreement, while my sister depletes her savings to pay the mortgage on her new house.