I sleep in it at night, piles of my own epidermis heaped up under me. Even if I just washed my sheets, but the next morning they feel gritty, dirty, gross. I wear oversized clothes, hoping to keep it in them and off the bed, but nothing helps. The pillow feels like a floor that hasn't been swept for weeks against my face; like what you see when you move your refrigerator for the first time in six months.
I'm surrounded by myself all day long. I am covering the chairs, the table, the desks, all the furniture. I am all over every page I read, every page I write, every pencil or pen or stylus I use. I am in the cracks on my keyboard, in the lens of my camera, in the corners of every screen of every electronic device I touch; kindle, DS, cell phone, net book, camera, mp3 player, watch, printer, air conditioner. I shudder to think of what a couple months of me has done to the air conditioner's filter.
I am in the most unlikely of places; I cake the inside of the toilet bowl, turning it gray with collected filth. I am in the towels, the washcloths, stuck in and on my own clothes, leaving white splotches and film. The smell of my skin oils is everywhere, every fabric I use or touch. Even my husband's clothes are covered, simply from being washed in the same machine as mine.
I can sweep the floor every day if I like, but the soles of my feet still turn a grayish white from the dead cells that collect on the floor and then stick to my feet. I am afraid to leave anything important sitting out anywhere. I can dust and just a day, or even hours later, everything is covered in the dust that is constantly clouding off of my body. I am walking dirt. I am literally and metaphorically a walking mess.
And that is only the beginning. I itch, almost constantly. I itch so much I don't even notice the fact that my skin itches until it gets to be completely unbearable. I itch almost everywhere; face, ears, neck, shoulders, back, chest, breasts, nipples, armpits, arms, stomach, hips, thighs, crotch, butt, butt crack. I itch in places I can't itch, places I shouldn't itch, places I better not be caught itching in public. I itch and itch and itch and still I itch. I itch until I bleed, but I can't stop itching.
And when I don't itch, I hurt. I hurt when I lay on my back, my stomach, my side. I hurt when I slouch, I hurt when I stretch, I hurt when I sit or stand or bend or twist or reach. The tightness burns, almost all of the time some days, although at this point I only ever notice it when I move. Sometimes it hurts to sleep, to ride the bus, to write or play games or make love. Sometimes I take tylenol, but mostly it doesn't help. Sometimes I put lotion, aloe, baby oil, vaseline, all over my body. But then my husband can't touch me, can't put his hands all over me. I make his skin break out just by making myself comfortable in my own skin.
They put me on medicine, strong medicine. It made me a normal color again, no longer lobster red or oompa loompa orange. I'm only slightly splotchy, but now it's so light people don't stare at me on the bus anymore. No one asks me if I got horrible sunburn or have a skin disorder. I begin to notice for the first time in months that people treat me normally when I go out in public. I no longer feel shame in the shopping line (except for when I have to use food stamps, but that's different). I no longer avoid going out because I look different. I don't have to waste away trapped in a prison of my own disorder.
But I still lose skin. I flake, peel, fall like snow onto everything around me. My seat in class is marked for me, so is the place I sat in the doctor's office, on the bus, at my employment training appointment. I know which side of the bed is mine, which seat at the table is mine, which towel is mine, which plate and cup and bowl are mine. I know my phone a mile away. My net book is unmistakable. My purse, my sweater, my folder, my hat, my wallet, my keys, my jewelry. Even much of my jewelry is unmistakably marked by my bizarre and rare disorder.
Almost all of it. I had one piece of jewelry that managed all at once to be a unique expression of me and of the right material to resist the marking of my skin. My sister had made it for me, mailed it thousands of miles just to surprise me. It made me feel close to her, and loved, and safe, and like myself. Until, of course, it fell and broke. The first week I had it. In that moment the one thing in my life that at once described and defied me was lying shattered on the floor. I cried. I cried for at least an hour. My dear, dear husband took the afternoon off to hold me, and then to clean the glass off the floor while I looked the other way. She's making me another one, but I still felt shattered with the tiny glass bottle on the floor.
The fatigue and listlessness are starting to leave, along with the coloring, although it is still touch and go with the depression. For the first time in weeks I can think about taking out the trash without wanting to cry. I can wash my breakfast bowl without wanting to take a nap before and after. I can write for a couple hours without needing to take a break every five or ten minutes. I can actually manage grocery shopping every couple of weeks.
Of course, all this would have been easier if my husband hadn't had his hip broken and required a major surgery just a week after my diagnosis. But that is a whole different story, even if the threads of it are tied up in those of this story. We both had to go through trauma, depression, feelings of uselessness and helplessness. And we couldn't even help each other, except to hold each other at nights, taking turns crying into each other's helpless shoulders.
But perhaps there is very nearly a light at the end of this tunnel.