Saving Face
There is no rush in sickness, just the lullaby of anhedonia. My face feels like it’s melting off. Only the right side, making me look lopsided or like I’ve had a stroke. It’s not a stroke, it’s MS. I can feel the imaginary downward pull. I feel it most on my eyelid and the corner of my mouth. A sharp, hyped up pins-and-needles feeling covers the right side. I’m drooling out of the corner of my mouth. Every time I look in the mirror I pull my skin back tight to remember what I’m supposed to look like. When I let go I don’t know where I’ve gone. I have lost so much to this disease. Please, not my face too.
A For Sale sign has gone up in front of my house. My landlord put the property on the market and is eager to sell, scheduling visits and open houses despite a doctor’s letter that my apartment should be excluded from this. My chances of getting the coronavirus are heightened by the medication I’m taking. Doctor’s notes don’t carry as much weight as they did when I was a kid. My landlord’s not interested in what my doctor has to say, and refuses to do virtual tours. I clean and re-clean after the appearances of all my unwanted guests. I wait on the back deck for hours — the showing and then an extra hour to wait out lingering germs and virus traces. I re-clean.
Heat and stress are known causes of MS flare ups. There are lesions forming in my brain and stealing my face. This could mean that my MS is not yet at the progressive stage. It will take another MRI to know what’s going on, and I haven’t had one in over a year. Even though hospital staff clean and re-clean, my doctor isn’t ready to call it safe.
Over Zoom, my doctor is patient and calm, instructing me to make a series of facial expressions. The problem is apparent. My face isn’t working. It’s hard not to cry. “I don’t want to lose my face,” I say, sucking in a sniffle. He orders a few days of heavy steroids through an infusion. It’s the go-to treatment for MS attacks, and most of the time it works, but there are other times when pieces of me have disappeared. My ability to walk in a straight line is gone forever. The constant pain in my leg feels worse at night. I’m always asked to describe the pain. It feels like I want to grab a knife and repeatedly stab myself in all the pain spots. Of course I would never do that, but it seems like the only thing that would bring relief. My face hurts like my leg right now, and it feels like my features are collapsing. Let’s see what the steroids do, my doctor says. He’s probably the smartest person I have ever met.
Infusion sites are taking fewer patients due to the rapid spread of COVID. I have to go into the city. Anything closer is booked. Steroids further compromise my immune system. I send my landlord a firm text about this. She responds with things like she MUST (in all capital letters) be able to show my apartment to serious buyers and maybe building inspectors. She doesn’t understand or doesn’t care. Slim says we still need her for a reference. Lacking other references and bad credit is putting my health in jeopardy. Our landlord seems to respond to Slim differently. Maybe it’s because he’s a man. Maybe it’s because his name is on the lease. Still, she makes no promises.
Slim knows what steroids do to me. He braces himself for the coming insanity, even when I tell him this time will be different. It won’t. Everything will be his fault for the next few days. I will say things I don’t mean, and he will do the same. We’re both sick of me being sick.
A nurse comes out and pushes my wheelchair into the infusion center. Slim waits in the hallway. I’m walking better with what looks like a drunk stagger, but I couldn’t make it through the hospital. My wheelchair is falling apart. I think it will be done with me long before I am done with it.
The sick always fear getting sicker, and nothing gets better fast enough. I worry this is part of my decline. A crooked smile. Nothing to smile about. I try to cover my mouth when I eat or talk. I’m scared and embarrassed. As soon as the steroids kick in, everything is wrong and I get very angry.
That night, and the next night, and the next night, I yell at Slim. I don’t even know what he’s done wrong other than being the only one there. I yell louder. I threaten to leave him. I don’t have anywhere else to go, and I don’t cover my crooked mouth. Having been through this before, Slim stays calm for as long as he can. Eventually he explodes too, and the fallout feels like there’s heartache all around. I am fighting everything around me and inside of me. I cry until I lose the battle against exhaustion.
The next morning I do it all again. My condition and misplaced anger don’t improve. My landlord is making plans with a building inspector. No one is listening to me. I just want to scream and run and wear high heels and get my face back. I’m waiting on things that may never come. Inside I am screaming — a call that this is all too much for me.
I get the worst headache of my life. Nothing makes it better. My nurse slows down the IV, and then slows it down more the next day, but that doesn’t help, it just makes the treatment take longer. I watch the slow drip. I can’t focus on anything other than everything that’s wrong.
On the drive home, after my final day of steroids, Slim and I don’t say much to each other. He turns on sports radio. I hate sports radio.With three days of Solumedrol coursing through my veins, it infuriates me. I say nothing. More than half the Miami Marlins have contracted the coronavirus.
Our president wants everything to open and function as if there’s nothing wrong. Trump calls for the schools to open. He looks like an idiot when he blames testing for the number of cases. The cases are there whether we know it or not. The world is as crooked as my smile.
We drive across a small bridge, an overpass on the way home to our New England suburb. “What the...” Slim says. He turns the radio down as we slow and halt a few cars deep at a red light. The Trump supporters are out. I’ve never seen so many right in front of me, gathered and bonded with misplaced anger.
Both sides of the street are lined. They hold signs and yell over each other, but all that reaches us is loud muffled nonsense. I can’t see their masks or their logic. Their foreheads crease evenly. Their mouths open as wide as they’ll go. They flaunt their symmetrical facial expressions like it’s just that easy. I don’t understand them. I am as angry as they are. I am so angry it hurts.
Andrea Gregory holds an MFA from the University of Massachusetts Boston. Her fiction has appeared in The Sun and Consequence Magazine, with a story forthcoming in North Dakota Quarterly. She is a former journalist and world traveler, having spent time reporting from the Balkans after the wars. Her work from the Balkans has appeared in Transitions Online (TOL), Balkan Insight, The Christian Science Monitor, and other places. She holds a BS in journalism from Emerson College. Her journalism career ended when she came down with multiple sclerosis, but life has a way of calling writers back to their roots.