by Máiréad Loschi (2016)

I don’t know all the technical jargon and stuff, but I can tell you what happened to me. I guess if you need to know all those medical details it’s in the chart. I mean you guys can read those charts, right? Maybe those regular doctors don’t put down the relevant brain information, I dunno. My sister’s a doctor. Well, I say a doctor—she’s still got three years of med school left. I guess you might wanna hear about the rest of my family, all that nature-nurture stuff. I don’t really know how to describe them other than saying, normal. My mom’s pretty depressed, about the way life turned out and all that. Everyone thinks they’re gonna be special, you know? My dad’s on a health kick. He eats yogurt and canned sardines and spends around four hours at the gym, walking like twelve miles a day. I visit them every couple of months, sitting in the living room while Mom knits and Dad reads Men’s Fitness. They haven’t seen me in years. The first psychologist I talked to said my family might have exacerbated the condition, but I dunno about all that stuff. I guess that’s your department.

The brain’s a funny thing. You know all about this, I’m sure. My last psychologist explained that it represses memories and tricks itself. It’s a protective mechanism. That’s what happened to me in my family’s minds. They can’t see me. No one can. “Out of sight, out of mind,” the saying goes. The last psychologist said that their brains corrected for them. In photos where I used to be, their senses changed them, interpreted them so the background blended out the space I had filled. Baby pictures of me sitting on my parent’s knees just look like a smiling couple to them. Sans baby. Photos of my sister and I arm-in-arm are just of her. The basketball team is missing a fifth player, the sailboat is uncaptained, and the soccer trophies don’t specify a name anymore. I’m slipping from their memories so they don’t go crazy. I don’t blame them. Their child is gone, unseen, invisible. If they saw pictures of me everywhere they’d go insane. Sometimes I think they might remember me, a shining moment when Dad might say, “I could’ve sworn there was someone else with us on that trip.”

I don’t think it was ever a single moment of epiphany. I think it was more of a dawning. The furthest I can trace it back is to my grandma. I guess it makes sense, the doctors said it’s hardest on the elderly, diminished eyesight and mental capacities and all that. The first thing to go was my name. Not too shocking, Gram was garbage at names in general. She called me my sister’s name, then my aunt’s. I could see her struggling, recognizing that those names weren’t right, recognizing that they weren’t mine. The trouble was, she wasn’t recognizing me. She’d call me Blarney or Shultz, names of past dogs she’d owned. My sister and I’d roll our eyes. It’s fine she’s old. She’s just going senile. Then she started introducing her “beautiful grandchild.” I’d tug on her sleeve, “No Gram, two.” “Two what?” “Two grandchildren.” “Yeah, yeah.” She’d brush me off. I’d chalk it up to another senior moment. I told Mom about it once. “Does Gram have Alzheimer’s?” “Why would you say that? She’s sharp as a tack.” Gram wasn’t sick, I was.

The doctors said it starts at the edges, just a blurring, like if the wall behind you is blue, then your edges are kind of blue too. They said it works its way in, something about peripheral melanin and the condition being like ALS, slowly paralyzing you from extremity to core, except I was slowly disappearing. In high school it took a trained eye to spot me, you had to know I was there, had to want to see me. At first it was fun, a relief. I could sneak into any movie theater I wanted to. If I walked very quietly and held my breath, I’d get past the ticket collector. My friends and I used this to our advantage. We’d cheap out, splitting three tickets four ways, with me walking clear as day right past the collector. If they’d been paying any attention they’d have heard four “thank yous” after directing us to the proper theater. I only got caught once. I must’ve hit the light funny or the red vested collector had spotted me out of the corner of his eye. Once he knew to look for me, there I was. “Ticket,” he said extending a hand to me, and I wanted to kiss him full on the mouth, but sheepishly turned back to the ticket booth and payed the seven dollars. The last movie I saw, I left a $50 bill on the ticket counter and tucked $5 into the collector’s pocket as I passed. You’ve gotta make up for what you get. Free movies for the past six years… you’ve gotta pay it back, you know.

I snuck into an estate sale once. The woman who had lived there had died at 102. I saw the certificate of congratulations signed by the President. I took it, a testament to life. She’d outlived her husband, watched her children age and die. There had only been distant grandnieces in the end and helpful neighbors who had taken her for weekly manicures and baked her lemon bars. She’d been alone. I got this feeling that she would have seen me. Eyes creamed over with cataracts, hearing almost gone, trapped in a failing body, but she’d have seen me. I bid on the house and moved in a month later. It felt like she’d bequeathed it to me.

The diagnosis was the easiest part. I found the specialist after a three-minute online search. The nurse popped her head into the waiting room and said the doctor could see me now. I damn near lost it right there. He could see me, yeah right! Suppressing my laughter the whole way down the hall and into the sterile examination room. I was still laughing when the doctors entered, even if they couldn’t see me maybe they’d still see the humor in the situation. Their gravity disproved that. The doctors told me that it’s an extremely extraordinary diagnosis. “A singularly rare melanin disorder,” they called it. Basically, where normal people lose melanin in their hair and it greys, I’m losing melanin in my whole body and I’m going invisible. Apparently only 1 in 300 million cases get reported. If you think about that, there are 2,500 people in the world right now who have this disorder—maybe more, but you just can’t see them. I looked into the odds. Everyone’s always getting hung up on the chances of being killed by a shark: 1 in 3,748,067. You’re more likely to be killed by fireworks, lightning, drowning, a car accident, a stroke, or heart disease than be killed by a shark. I avoided all of these, but I’m the sucker who gets “a singularly rare melanin disorder.”

The symptoms start with the peripheral blurring that works its way in. Once it reaches your core it’s just a constant feeling of being insubstantial. It’s like that lightheaded feeling you get from only eating an apple all day. And you think maybe if I eat something solid, four glasses of milk and a beefy burrito it’ll reverse itself. Maybe I’ll gain visibility. Sometimes I think if I ate all that, you’d be able to see it sitting in my stomach, through my invisible skin, but then I remember that’s not how it works.

We met in the online support group. Goldenboy398 was his username, a Paris native, so I called him Louis. He told me what it is to be in the most crowded part of the city and not be seen, never bump into another person, never meet the eyes of strangers. I told him about the feeling of driving late at night on rural roads and there’s nothing but turns ahead of you and no headlights behind you and you feel like you’re the only person in the world. I didn’t book a ticket, snuck past security, and boarded with priority passengers. It’s an unwritten rule that one first class seat is always open. Treat myself to reclining, top shelf liquor, leg space. He met me at the airport and we wandered the city. Didn’t stand in line at the Louvre, climbed the Eiffel Tower after hours, and walked the streets, along the Seine. We became nocturnal, claiming the midnight streets as our own and walking endlessly. The witching hour and we felt like magic. I couldn’t see him, but I knew him. My mind created his features, solid and brassy. Golden. We visited Versailles and hopped the barriers in the king’s chamber. Careful not to ruffle the bedding we sat, facing the crowd, unseen and holding court over our adoring subjects. In the fabric I was so small, drowning in a sea of opulence and extravagance with Louis beside me, the heirs to the Sun King wanting to be part of the splendor. Wanting to be remembered. I left the next day and back home I couldn’t remember if it was real.

The Discovery Channel heard about my case, so did TLC and all the other science channels. I started talks with the producers of a show called, Diagnose Me: Medical Mysteries Revealed. These guys were supposedly really good, they’d revealed the woman who was pregnant for 50 years to the world (the fetus was calcified, it was actually pretty cool). The talks were getting serious. But, I didn’t want to clean the house, didn’t like the time commitment, and didn’t see how they could reenact the vanishing. Was this vanity, a desperate cry for recognition? What made my story any more important than the other people who had faded? How can you capture losing yourself in a one-hour special feature?  I turned it down.

People are always asking me how it feels. It’s a favorite of your psychoanalyst, headshrinker sort. “And how does that make you feel?” Are there words? The best I can do is analogy. It’s like that moment when your leg seizes up in bed and it’s paralyzing. You can’t move because your trapped in sleep, but your mind is raging against your body, screaming for your calf to release. You’re helpless and all you can do is to take a measured breath and relax from your chest through your pelvis down the length of your tensed leg until it eases. When your leg cramps up you can fix it, but when you’re invisible it’s irreversible. Your body is screaming for recognition but no one will acknowledge you, your very essence is questioned. It’s a slipping of sorts, slipping from family, from memory, from reality. At first you get complacent, it’s a relief, you can hide easily, can sneak around, but now it’s a horror. No one touches you, sees you, hears you. You might not exist at all.

That’s why I’m here, really. I mean the answer to that question put me here. Sometimes your mind plays tricks on you. It protects you but it also deludes you. What if I wasn’t real? What if I were a ghost? Am I dead and just clinging to a shadow of a life here? Do I even exist? It’s a whirling and a spiraling and a slipping. That’s how it feels and there’s no clarity, no voice of reason because no one can see you.  That’s where I was mentally, I guess. I tried a tattoo first, something permanent. It looked like the rainbow light that comes through prisms or reflects off watch faces onto the wall. A stamp on my skin, punched onto my collarbone. Visibility guaranteed. I’m here. But am I? The feel of my body is real to me, but did my consciousness construct it? What proof of physicality is there? I wasn’t gonna do anything stupid, I just needed to see. Pulling the plastic head off the razor, bending the blade out at a crude angle. It wasn’t a death wish. I just cut into my arm, not even near my veins, like on the side of my arm, not life threatening at all. And there it was just spilling out of me and there was clarity and I was alive. I existed and I saw myself for the first time in years. Really saw me. They say beauty is in the eye of the beholder, but when there’s nothing to behold, how do you know? I’ll tell you this, that crimson trickle was beautiful. Garnet and rubies falling to the floor from my veins, surety was beauty. And now I’m talking to you, and you’re trying to see if I’m suicidal or crazy, but I’m not, I just needed to be sure.

I don’t know what else I can say, and maybe at this point it doesn’t matter because you’ve already sized me up and come to your conclusions. I’ve only ever had three fears in this world. The first is jellyfish, the second being alone, and the third, being forgotten. I haven’t left anywhere or anyone behind, I’m still here, I’m alive and I’m slipping from their hearts. I am alone and forgotten and afraid and invisible. I haven’t told a lot of people these fears.

Sometimes it seems if you voice them, they’re more real.

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