Pain syndromes are common in MS. In one study, 55% of people with MS had “clinically significant pain” at some time, and almost half had chronic pain.
-National MS Society

When my legs slowly paralyzed—heavy rain, wood, stone—I spent hours holding tight to the kitchen table trying to lift each knee into the pressing air. An editor once asked in an encouraging rejection letter why the manuscript had to be so depressing.

My wife goes for a run, kisses me when she returns. I lick her salt from my bottom lip slowly as she showers, taste what it tastes like on the chin of movement and sun—pollen and residential trucks, all the retirees fertilizing impossibly green lawns—feel my lips hello to Clarence across the street.

You ask how I feel. This is a trap. If I say my body hurts, not in my skin or fascia but in the spreading of pain along my nerves from my mother to my daughters. If I say, inside me pain learns something new: how to web into the small and wet, loiter in the old rooms of flushing and blue. You will reply, I’m sorry. I’d rather argue.

Today is a bad day, but I dress anyway. Bra too. How many bra days do any of us have left? The children ring-around in the trampoline. One person in group loses whole days, makes love and doesn’t remember. What makes me Allison if it isn’t walking or touching or these words and my memory of writing them?

In the closet we embrace. I’m hanging clothes half asleep. Flushing and chilled from drugs, I try to print the softness of the backs of your arms into my brain as they move against my forearms wrapped around you. The smell of your breath drifts into my open mouth pressed lightly to your neck. Thursday afternoon in August. I’m standing after a fall I will describe another day to my neurologist. Today there was blood.

Do you think of yourself as disabled? Do you think of me as a swallowtail, a fern, a dust covered suit coat? She hates this. No. You seem fine. What do I know about living in a disabled body? If that is how you really see yourself, you’re lying to me about how much pain you feel. This is when I should come out. I’ve forgotten how.

Last night I slept through our baby waking again. I’ll never get her night wakes back. My body hollows.

My wife says the word flushing is dainty as if I’m corseted with the vapors. Do I feel hot when you touch me? She is holding ice packs to my face and chest. No. Earlier I tried to explain the opposite of hunger but didn’t mean full. I’m down eleven pounds. Flushing feels like fire—that isn’t right—my veins are trying to escape from my pores.

I’ve been conscripted into an army of the unwell. We didn’t know how pain waited beneath the surface of date night, lake weekends, weeknight prayers over chicken and rice. This is pain so black and real you suddenly feel so suddenly alive, not even birth makes a body this alive.