What Nationality Is She?

In case anyone reading doesn’t know me in person or somehow forgot what I look like from not seeing me in so long, I have Albinism. One of my first entries was about my relationship with the sun. The short version is that I am pale. I have pale skin. I have platinum blonde hair. My eye brows, eye lashes, chin hair … okay you get it … are all white. Daenerys Targaryan with the silver hair ain’t got nothing on me.

My appearance has led people to a “what nationality is she?” guessing game my whole life. I have been disappointing them since birth. My mom was a dirty blonde blue eyed California girl when I was a kid (that’s not to say she’s not blue eyed anymore, but the hair has changed color. Cancer and aging will do that.) When I was out and about with her, people would ask, “oh, is your husband Swedish?” Nope. “Norwegian?” No. Sometimes mom would explain; more often she was in a rush because that is a constant condition of being a single mom.

My dad has gotten darker over the course of his life. As an adolescent, he was kind of redheaded, at least he looks that way in a picture I have. By the time I came around, which wasn’t all that long after his adolescence, he had dark brown hair and greenish/hazel eyes. I can’t be sure. I don’t really look at my dad in the face, certainly not closely enough to discern his eye color. He also worked outside on landscaping crews so he was always tan. When I was out and about with him, everyone asked, “Is your wife Swedish?” No. “Norwegian?” No.

No. I don’t have Swedish or Norwegian lineage as far as I know.

One time when mom had taken me into DC to the Smithsonian to see King Tut when he was on tour, some people in line were gawking. Mom has never liked people gawking at her children. One funny thing about Albinism is I’m often too blind to notice the gawkers… it has to be REALLY bad, and it has been sometimes (those German guys in Paris? WOW friends, lean back, personal space and all). Mom got annoyed with the people in line and decided to educate them. “She has Albinism.” That didn’t shut them up or stop their staring. In fact, they then conducted a conversation in a whisper that was not quiet enough to miss my mom and me, “I thought people from Albania were dark.” We didn’t spare them our ridicule and still laugh about the stupidity over two decades later.

So, not Albanian either.

Unrelated to my coloring, but also in the game of “What Ethnicity Is She?” on a late night subway ride home a crazy lady talked to me for at least ten minutes about the fact that I AM JEWISH. She was adamant. I was sorry to disappoint her, but she did not believe me. She said that my nose gave me away (thanks for pointing out I have a big nose… I like to think of it as REGAL!). I laughed with good nature and assured her that I was German Lutheran, Irish Catholic, and Dutch Protestant. No, she continued, I must have had ancestors who converted to protect themselves, maybe even as far back as the Crusades. I only know my family history back to the nineteenth century – and that we were definitely out of Germany by the 1890s – so I had no way to prove her wrong. I retreated into my headphones when I realized she wasn’t going to give it up.

So, not Jewish.

Even my own grandma has chimed in regarding the family’s heritage, though her information is suspect and lends nothing to an explanation about how pale I am. She said we have Cherokee blood somewhere. Yeah. Okay, grandma. You’re also an astrologist, numerologist, alcoholic, and compulsive gambler who has said some of the most hurtful things in my entire life.

In fact, I forgot to include her in what went wrong in 2014 because I try very hard not to think about it. I’m thinking about it now, so are you ready for some of the bullshit she laid down in August 2014 at the family reunion in Colorado? At one dinner, she casually mentioned that my mom wanted to abort me when she found out she was pregnant because things weren’t going well with my dad and she was already overwhelmed with one child with Albinism. Um. Wow. Thanks for that, grandma. I tried to steer clear of her the rest of the time I was there because what do you even say to someone after that? Mind you, she is NOT my mom’s mom, and my mom was never close enough to her to confide anything so important, so I assume grandma was divining this information from the stars.

After avoiding her most of the trip, she grabbed me one night after dinner and maybe in her mind tried to make “your mom wanted to abort you” okay. Except she dug herself a deeper hole by telling me that my soul was not sure it wanted to be born into my life, that I was sick as a baby and had to go back to the hospital for several days because my soul was unsure about its participation in the life I would have. Well, science says it was a Staph infection and jaundice, but who am I to argue with grandma? She kept going. She said my soul’s uncertainty was also the cause of my suicide attempt when I was a week shy of 16. I try very hard to avoid my grandma at all costs after this encounter. I don’t need any of what she’s got in my life.

So, not Cherokee or whatever other weird painful shit my grandma thinks.

Today, though, today was a SCENE. My ankle is still weak, so I had it wrapped and was wearing capri pants and loafers when I went out to the drugstore. I had my very white hair up in a ponytail and quietly made my way through the aisles gathering what I needed before I approached the pharmacy line to pick up my diabetic fur face’s insulin like the good pet mom I am. (Happy mother’s day to me!) There was a woman leaning on the counter having a full conversation with the pharmacist. I guessed they were speaking either Russian or Polish based on the demographics of my neighborhood and what I know of how the two languages sound. I stood patiently in line, not making any faces or checking the time, just letting them do their thing, shoot the shit. I wasn’t in a rush.

The customer saw me and immediately started speaking to me in the same language. She then turned to the pharmacist and pointed at me, continuing to speak in the language. She stepped away from the counter, closer to me, talking rapid fire and LOUDLY in a language I do not speak. She pointed to my ankle, noticing for the first time that it is wrapped, and said a single recognizable word, “pain.” I nodded and said, “yeah, it hurts, but it’s okay.” She then advised me that my hair is very pale. (Prior to her saying so, I didn’t know, right?) She pointed to me and continued speaking to the pharmacist about me. She then asked me a question that I should have been able to answer because she believed that I speak her language. She gave up at some point, maybe because my polite smile started to slip because I wasn’t in the mood (am never in the mood) to be a spectacle. She finally asked in English if I’m Polish. Again, I had to crush someone’s guess in “What Nationality Is She?” I told her no, just American. She wanted to know my heritage, so I said some Irish and German. At “German” she spat at my feet. She told me I should dye my hair. The pharmacist indicated that this woman didn’t have any real business and that I could step forward and get my cat’s insulin. The insistent customer kept trying to speak to me in Polish, CONVINCED that because my hair is so white, I MUST be Polish. She offered a few other nationality possibilities, like Italian (what?). She continued to speak in Polish throughout much of my transaction, indicating with hand gestures that I should speak Polish, I must speak Polish. Finally she went away, and the pharmacist offered apologies on the woman’s behalf. “Barbara is okay. She just, she thinks you have to be Polish because of your hair. Sometimes she’s a little… ” and a gesture to indicate off kilter. “I’m sorry she offended you.” I wondered briefly what my face looked like because I wasn’t offended so much as confused at how emphatic she was. I assured the pharmacist that it was fine and left.

Walking home, I tried to think of the people of Polish decent that I know. Not a one of them has hair nearly as blonde as mine, though many of them are very tall like me. I was also amused by the notion that I should either dye my hair or learn to speak Polish to satisfy that woman’s view of where I fit in her world.

So, not Polish either.

Just a person with Albinism and mixed western European heritage. And disappointment for those who persist in guessing. And waning patience for vociferous guessers.


The Hardest Question

There were A LOT of great quotes from season 7 episode 3 of Game of Thrones. Sam explaining HOW he figured out how to treat grey scale. Sansa trying to understand what the fuck Bran was talking about. And Tyrion pressing Jon Snow, only to hear, “I know it’s a good question. I’m looking for an answer!” (Side note: I want to live on Dragonstone.)

It’s perfect for what I was thinking about after the ophthalmologist today. I’m used to feeling like a freak most places I go, but the technicians today took it to new levels. In a practice of at least 15 eye doctors, I mistakenly assumed the techs and nurses had seem someone with Albinism before. Not so for the many technicians whose minds I blew when they tried to use any of the machines to get a read of my vision. I haven’t had a checkup in over a decade, so I know some technology has changed. There was more computerized stuff than I remember, but therein was the problem. Because my eyes move constantly (nystagmus) the readings probably aren’t accurate. I tried to explain that to two technicians at the first set of machines. They were too busy speaking Spanish to each other about how weird my results were. (NB: I speak enough Spanish to understand everything they said.)  I was then sent to a machine that was intended to take some sort of image of my eyes while I looked at a blue light and a red line. A third technician began the test and got frustrated. A fourth, this one an Asian dude with a rockin’ man bun, helped. He doesn’t even work there regularly I learned later in the appointment, so why is he the only one who didn’t seem to freak the fuck out that these fancy machines aren’t cutting the mustard when it comes to measuring my peepers? Ugh. One of the confused technicians then tried to have me read a vision chart. That was a laugh. Next came a peripheral vision test, which I failed and cheated on by moving my head. Short cuts! I told her before all of that that I’m legally blind, blowing her mind a second time.

“How you get around?”

Well, as I’ve mentioned, ma’am, I’ve been this way since birth and I’ve been adapting that long too. “You’re 35 now.” Yes, that’s what the chart says. “When your vision problems start?” When I was born. It hasn’t gotten any worse. I just need a checkup.

The doctor popped his head in at that point because I assume the other technicians had alerted him to the “alarming” results the machine tests spit out. Thank God he knew what he was doing. Tech One told him I couldn’t do the peripheral vision test and launched into something else. He cut her off, “no, she wouldn’t be able to do that. She has Oculocutaneous Albinism.” (Words the tech had a great deal of difficulty finding in the computer when she was trying to enter my info). So, my ocular muscles suck as does my peripheral vision. I knew that. Can we get on with it?

“Can I give her drops?” Because apparently my eyes are so out of the ordinary to this woman who works in an eye doctors’ office that she wasn’t sure if she could perform the basic exam requirement of dilating my pupils. Y’know what? I wish I had answered for her and escaped without the dreaded drops, but the doctor set her straight.

I got the drops and waited for the doctor. Like I said, thankfully he and his guest doctor (from Chile, so of course I mentioned Neruda) knew their shit. My eyes are great, exactly in the middle of the range of expectations for someone with OCA. The doctor is especially interested in it as a research topic and personally because he has a first cousin with albinism. He wanted to get some residents to look because it would’ve been a great teaching moment. They were all at lunch, which is where I wanted to be.

With a great report, I wanted to find a dark room and lay down until the drops wore off, but I had to get baseline images. A third machine. Three technicians trying to figure out the best way to make the machine work with the freak show, uh, I mean me. Again, Asian man bun was the only one who acted like he had any idea what he was doing. If I didn’t like the doctor so much, I might have had a hissy fit at that point.

With a massive headache and worse vision than usual thanks to the drops of death, I made my way home thinking about the question “how?”

In teaching, we talk about developing thought-provoking, open-ended questions and whatnot. We tend to say WHY questions are the most difficult. I’m not so convinced when it comes to life outside of teaching. Why is often completely inexplicable in life. Why does shit happen? Philosophers have been asking that forever. I get into that sometimes, and it’s fun. But HOW. How is a tricky sucker because people ask all the time and science tries to answer.

There are some HOW questions that I’m sure someone can answer but would be impossible for the layperson to understand, like how does wifi work?

More often people ask me HOW questions that I can’t begin to answer.

“How do you get around?” I don’t know, with my feet. To the best of my ability. The way every other human being “gets around” in that my brain sends a message to a certain part of my body to MOVE and my body does… It’s not like I was given a choice about my vision, so it never occurred to me to do anything differently than the way I perceived other people “get around.”

“How do you teach high school?” Like I was born to do it. I listen to my students. I give a shit about them as human beings. I know that they are probably smarter than I am in tons of ways, so I respect them for that while keeping my place of authority by being an expert in my subject area. How do YOU work in a cubicle? Oh right, you get your ass up and there on time and do what your boss asks because you want/need a paycheck. Next dumb question.

“How did you not have a nervous breakdown?” or “How do you deal with the stress?” or any other HOW questions about depression and anxiety…. It’s so hard to answer. But I think it’s like my vision… It’s not like I have a choice. Yeah, do I feel like it takes everything in me to get out of bed some days? YES YES YES. How do I do it? Because I know staying in bed more than one day isn’t an option. How do I keep it together when something horrible happens, how do I stay calm in crisis situations, how to I put up with this or that? Because it’s not an option to lay face down, pounding my fists into the ground and screaming, so that’s how. I know there’s no choice, so I do what I can.

“How do you know that?” When I know something about a friend’s life that s/he hasn’t told me directly. Intuition. Empathy. I pay attention. I might be a little psychic?

It’s funny because we think HOW can be broken down into steps that are transferable to anyone. But we all know that’s not true. If it were that simple, we could all do things that some people are clearly better at than others. HOW do you hit a home run? Science tells us about speed and force and angles and steroids, which is only part of the answer. Think about it. It’s a process question. That means you have to understand the process and be able to articulate it in a way that makes sense to someone else. That’s a lot harder than the three letters H-O-W lead you to believe.

So, HOW do I do anything? It’s the hardest question.

The O Doctor

Ladies, doesn’t “The O Doctor” sound like a great name of a sex toy that guarantees an orgasm? A quick Google search tells me no such product exists, so I’m going to claim the name and marketing rights while someone else develops the product.  I’ll be rich!

What I’m really talking about is optometrists and ophthalmologists, even opticians, because we’re all so confused. (Not OB/GYN, though I’ve also scheduled that appointment in my quest to catch up on being :::mumble::: years behind on making sure my body is working the way it’s supposed to.)

The type of Albinism I have impacts my vision as well as my pigmentation. People can only see the pale, but the bigger problem is my low vision. As I’ve explained before, it’s congenital, so I don’t know any other way to see. I have tried to explain, and I will again for the benefit of people reading who haven’t heard me talk about it. But please keep in mind that I have no accurate point of comparison because I’ve never had “normal” vision. I’ve had my eyes my whole life. The vision problems that come with Albinism are not degenerative, so I can’t even compare to something in my own history. My visual acuity has been the same as long as I’ve been able to say which letters and numbers I can see on the chart.

A few ways I can explain it:

  1. If you woke up tomorrow with my vision, everything in your world would be smaller, appear further away than it ever has, and be fuzzier around the edges. If I woke up with your vision tomorrow, I would be thoroughly disoriented because the opposite would be true – I would be able to see finer detail in things from farther away, the edges of things would be crisper, more defined, everything would probably appear bigger.
  2. Visual acuity is measured as 20 over a number. I don’t know what genius decided that’s the way we’d do it, but anyway, it’s 20 over x. The x is how far away the object appears to your eyes. 20/20 means your eyes see the object as if it is 20 feet away. 20/100 means that the object, though only 20 feet away, appears 100 feet away to a person with that visual acuity. (Seriously, who came up with this? And what amazing science that we can measure it with a stupid piece of paper with random letters). My visual acuity in my right eye is 20/200 – meaning with my left eye closed, an object 20 feet away from my open right eye appears to be 200 feet away. I don’t know that because I’ve always seen like that, so I’m horrible at guestimating distances and seeing things that are far away. My left eye is a little better at 20/160, but most charts don’t measure that closely, so on record I’m 20/200 and, at least in the state of Virginia, that means I’m “legally blind.” Some places call it functionally blind instead.
  3. If you are standing across the street from me anywhere in NYC, I probably can’t see that it’s you, even on the smaller one-way streets. I once startled my best friend because I DID recognize her from that distance, but her big purse gave her away, not any detail of her face. She’s my seeing eye human and was my college roommate all four years, so besides my mom and big brother, she has the most experiencing living with me and observing what I can and cannot see.
  4. Take that same distance – across a major cross street like 14th in NYC – I don’t know how far that is. Look it up of you’re super interested. At that distance, I can see clothing colors, general body shape and size, hair color. I can tell if you are facing me or not, but I cannot tell any distinguishing facial features. I can’t tell the shape of your eye brows, nose, mouth, whether or not you are smiling, your eye color, whether your eyes are open or closed.
  5. From a car, if we’re on a road that’s lined with trees or farms – grass is textured green to me whereas you might be able to see individual blades. The same with corn stalks. Depending on how fast we’re going, trees I can individualize, but I couldn’t tell you if there were squirrels or birds in the branches. I can see and count the farm fence posts, but unless the animals are very close to the fence, I only know it’s a farm animal of a certain color whereas you see for sure that it’s a cow, horse, sheep, something else. The flowers we pass are colors with nebulous shapes, not specific species with petals and other identifying features.

People who spend enough time with me know that they’ll have to steer me away from stepping in dog poop, read overhead menus to me at fast food joints I’m not familiar with, whisper subtitles to me in the movie theater, tell me if someone is waving at me from across a room, alert me to someone staring at me (that’s mostly my mom’s job because then she glares at them with an evil mama bear protective thing going on), read street signs to me, give me directions with landmarks and number of blocks rather than street names, and point out ice on the ground in the winter. Some friends also make it a point to tell me how many steps there are and how big they are.

The tricky thing about my vision is correcting it. I don’t wear glasses or contacts because in addition to all the stuff that goes along with Albinism, I also have astigmatism, which means my eyes are shaped more like footballs than softballs. They’re a little pointy, so the focal point is slightly different. This makes it more difficult to prescribe a lens that can both enlarge and sharpen what I see. The compromises for everyday glasses is bigger objects with fuzzier edges or smaller objects with sharper edges. No thanks. So I have reading glasses for holding things close.

And what doctor do I go to for treatment and glasses? All those Os, but what’s the difference? I haven’t been to any eye doctor in longer than it’s been since going to the dentist, and I wasn’t willing to admit that here, so you can just imagine. The last doctor I went to was an optometrist who specialized in low vision. He was amazing. He helped my big brother force the state of Virginia to create a pathway to drivers’ licenses for people with low vision. Growing up, mom took me to an ophthalmologist though, so who am I supposed to go to now? And what’s the difference? And what’s an optician? Thank God for Google, right?

Opticians are basically the lens grinders. They aren’t doctors, I don’t think. They are like the pharmacists of glasses and contact lenses. They fill the prescription written by either of the other O doctors. They can make sure your frames fit on your face right so you aren’t the kid with crooked glasses. I don’t think they perform full eye exams. They can probably tell you what shape frames look best on you, but they might be trying to up-sell you to the Kate Spade frames that make them a bigger commission. (I don’t have anything against opticians. I’m guessing at some of this.)

Then there’s the optometrist. That IS a doctor who CAN perform full eye exams, and give you those damn drops that dilate your pupils and make the rest of your day horrible even if you do wear sunglasses out of the office. They prescribe the lenses that the opticians then make for you. They can help you with any number of vision problems, but their treatment stops at medicine and low vision aides.

The ophthalmologist (which I still cannot spell right) can perform surgeries in addition to doing all the stuff the optometrist does. These guys do LASIK and re-attach your retina. They can remove cataracts.  So they’re more comprehensive.

My mom was probably right to start my brother and me at the top because she had no way of knowing if our vision could be corrected surgically or if we would develop conditions that would require surgery. Science moves quickly, and my eyes are a great example of that. When I was little, there was no possibility of correcting my vision using any type of surgery because of my nystagmus, a lovely symptom of Albinism. Nystagmus is an involuntary nerve movement of the eye. My eyes shake side to side unless I am in physical shock or I am sleep walking (both fun stories for a later time). I do not see the world shaking because the movement is so fast. Nystagmus made surgery impossible because the slight movement was too difficult to navigate with the precision required when doing laser surgery. About 10 years ago, I heard about a surgery created to stop the nystagmus. The results were improved peripheral vision, but it also opened the possibility of other surgeries. Of course, I’ve also heard that surgeries like LASIK, even after a surgery to stop the nystagmus, wouldn’t help my vision because of other factors related to Albinism. It doesn’t matter though because I don’t think I’d ever get surgery on my eyes for fear that I’d go completely blind.

So why go to the ophthalmologist now? One reason is I can do it through NYU Langone, where all my adult medical records are centralized and where I’ve received stellar care in the past. Another reason is because I don’t know where science is now – it’s been THAT long since I’ve been to an eye doctor of any kind. Also, as we age, our eyes change. What if I’m developing baby cataracts? I WOULD have eye surgery to remove cataracts. Plus, there are a few people at the NYU practice who specialize in neurology as well as ophthalmology (still have not spelled it right on my own) who might be able to explain more about my optic nerves and how they are connected to my brain, something I’ve heard about but don’t totally understand. (Left brain controls right eye? Right brain controls left eye? Except not me because I’m not normal?) And neurology also covers nerve movements like nystagmus. But mostly because mommy knows best and she told me I should be going to an ophthalmologist (GOT IT RIGHT ON MY OWN THAT TIME!)

I’m seeing the O doctor on August 1st. I might have more to say after that. Or sooner as I develop that sex toy.

Sleeping with the Enemy

Last night was another rough night, just like last Monday. Usually it’s Sunday nights that get me, but that’s during a regular work week. It took forever to fall asleep. I’m not sure which of many frivolities I was contemplating when my brain finally threw in the towel. But I responded better this morning than I did last week. I got my ass up to stretch, walk, and shower before going to the dentist for the first time in :::mumble::: years.

The connection between going to the dentist, not sleeping, thinking about faith, and how last week wasn’t great based on my own criteria for success isn’t easy to explain, nor is it all that interesting. That said, I’m trying to write every day and I’m aiming for honesty, so it’s worth a blog, especially since I mentioned Albinism and my lifelong struggle with my weight in my first blog.

Albinism is a congenital condition. I’ve been like this since birth, so I have no way of knowing anything else. I don’t know how to explain what I can see or if it really is “as bad” as I say when I tell anyone I can’t see something. There is nothing with which I can compare my vision. Because humans are incredible creatures, I began adapting the minute I was born. I didn’t know it, just like all babies don’t know it, I was figuring out the world and how to interact with it in a way that worked for me.  My infant niece looks like she knows all the secrets of the universe and can’t tell them to me, but on the other hand, EVERYTHING is new to her as a baby. A baby doesn’t know its not “normal.” I didn’t know I saw things any differently than anyone else. It wasn’t like I could have a long talk about it with anyone. In special education speak, we talk about adaptive behaviors. Many of those behaviors need to be taught, but some of them come through trial and error. I was adapting my behavior without consciously knowing it. Stupid example, but this is what I mean: when you can’t see something, you get closer to it, right? You stop getting closer when you can see it. Now imagine that you’ve had no social conditioning about what you can and cannot do to get closer to the thing you’re trying to see. That’s what it was like when I was a baby and a toddler. I probably didn’t know that most people don’t get so close to something to see it or use their hands and mouth to test what something is (although, babies are big fans of using their mouth to get a sense of things).

My older brother blazed the trail, so I’m sure I benefited from all the mistakes my parents made when he was little. When it was time to start school, he got to try it first. We went to the same schools, so most of the teachers knew me through him before I even met them. We got services through the county, but mom opted to put us in general education classes, or “least restrictive environment.” Our impairments were entirely physical and in no way intellectual. We’d both had IQ testing and were genius level. We didn’t need services for learning; we needed them for seeing. Again, at five when I began kindergarten, a great deal of my adaptive behavior was subconscious. Mom did teach me how to self-advocate, so on the first day of any school year with any teacher, I stayed a few minutes after class and briefly explained Albinism, asked to sit in front of the classroom, told the teacher that if I was talking in class it was most likely because I was asking for a classmate to help me see something. In elementary school, I even asked to give brief presentations to my classmates to explain Albinism to them. My mom is awesome for many reasons, but instilling that self-advocacy is one of many things I do not thank her for often enough. Kids were still assholes, but they’re little humans, and humans are assholes, so y’know (insert shoulder shrug here).

There’s a ton more to say on the subject of adapting to my vision, but I think the point I’m aiming at is that my body did what it needed to do to make life work. I didn’t really have a say in it when I was little. Obviously we don’t pick our genes, so that was my body’s first strike. Then as a baby I didn’t know I was “impaired,” so my body and brain assimilated the world as best I could. By the time adaptive behaviors could happen on a conscious level, I was already doing so much “behind the scenes” that it didn’t strike me as a big deal. The bottom line is that my body did things of its own volition without my consent. It was a thing separate from my mind, or at least it feels that way a lot of the time.

Add to that the fact that I was raised in church where I heard things like the body is a vessel of temptation, the soul is divine. The body is a temporary thing, the soul has permanence. “Ashes to ashes, dust to dust” is about the body. We store up our treasures in heaven; the physical world and its trappings can lead us into sin. It’s not like these things were pounded into my head, but they resonated with me. I think these kinds of body/soul dichotomies hit me because I already understood the separation of my body from my mind; to extend that to the soul going heavenward and the body dying away just made sense. It also made me feel even less connected to my body. For some reason the ideas of the body being a temple for the Lord and the body being a miracle (though I have always seen healing as miraculous) didn’t sink in the same way. Because it didn’t work with my mind, often worked against what my mind told it to do, and because it was a physical thing that was unimportant in the grand spiritual picture, my body became an enemy.

I didn’t take care of it because it didn’t take care of me. I knew about eating healthy and exercising because I’ve never been a moron, but my body wasn’t ME. It was just a thing – a thing I didn’t control and a thing that would lead me to sin, so not a good thing. It’s not as dramatic as it sounds now. I didn’t know I was drawing these battle lines in myself. I know gluttony and sloth are also sins. I know that I used food as comfort without thinking about what I was eating or how much I was eating. I played some sports, not well, and I danced, a little better than I played sports. But I was silently nurturing the divide. The body, the mind, the soul were not friends working together for my best me. I’m not even sure I thought they could do that. I can’t say how much of this was conscious, but it’s crystal clear in retrospect. I look at my teenage self and the decisions I made about makeup, jewelry, clothing, sex, alcohol… it all says I AM NOT MY BODY and MY BODY IS NOT ME. Two completely separate things, one of which I favor (the mind) because it hurts less and doesn’t get criticized as often.

I’ve never been good at seeing my own beauty. I’m a woman who grew up with a toxic standard of beauty.  Because I didn’t think I was anything to look at, doing anything to ADD to my visibility to others was a no-go, hence the no makeup, no jewelry, no fashion. I was (and am) all about comfort and ease. The one thing I didn’t like compromising on after about 14 years old was my hair. I took care of my hair because it was the one thing I thought others saw as beautiful. I’m not even sure if -I- saw it as beautiful until later, but I got compliments often enough to know that other people thought it was. The images of beauty all around me were just more reason to hate my body.

When you hate your body and view it as a thing separate from your soul and your mind, you try to sublimate it in any way possible. I did that with food… exacerbating the problem of hating my body for being fat. Hooray vicious cycles! I did say I’ve been in some kind of therapy since I was four or five, right? (See Shrinks’n’shit) It’s a weird, complicated head space.

I can’t point to a moment when my body stopped being the enemy or I decided to integrate my mind, soul, and body. I’m not even fully there. My body is still very much not a friend. I am, however, better now than I’ve ever been about understanding that if I don’t take care of my body, I also feel bad in my mind and soul. I’m more interested in balance these days. I can’t share my mind and soul if my body craps out on me… if it dies, there’s no telling what happens to the other two, besides faith that something better awaits.

But my mind is still at odds with my body. We don’t understand each other. Even more telling is that I can still talk about body and mind as if they are two different things – one me (mind), the other not me (body). It’s why I’m not great at yoga. I try, but while it’s good for my body, my mind wanders. It’s why I have unexplained aches and pains. I don’t move mindfully, just like I don’t often eat mindfully. I don’t slow my thoughts to let my body keep pace – because my mind moves WAY faster than my body ever could.

It’s a war, trenches dug, lookouts standing guard, decades of bloody battles remembered through scars. We have peace talks every so often, but I still find myself sleeping with the enemy.

Vitamin D

Today was a gorgeous sunny day with nothing scheduled except piles of grading, so I took a lunchtime wander outside.  It got me thinking about my relationship with the sun, which is complicated given that I have albinism.

Context is everything, so let me explain a few things. I was born in a Seattle suburb, the heart of the temperate rain forest that stretches from Oregon to British Columbia. It’s a place notorious for its rain. My mom moved us to Northern Virginia before I was able to form memories of Washington state, but I’ve always been drawn to trees, trails, damp, the gray and green, dappled sunlight through leaves when sunlight is to be had. I didn’t understand that my preference is soul deep until I went back to the Pacific Northwest in 2011.

Besides being elementally drawn to rainy, shady places, I also have albinism, a recessive genetic condition that limits the amount of pigment in my skin, hair, and eyes, causes low vision due to several factors, and makes the sun my arch nemesis. Okay, so that last item is an exaggeration. My earliest memories of understanding what the sun is are marked not with “the center of the Milky Way” or “the Earth’s first source of light and heat.” Instead, I remember the sun was going to burn me, if I got burned enough times, I’d get skin cancer, and skin cancer meant death. Fear is a powerful force in childhood, but not as powerful as the desire to swim outside or play on the beach without a layer of goop slathered over every inch of exposed skin. The fear was conquered by impatience more often than not, and I was introduced to another extremely powerful force: pain.

Sunburns are a special kind of torture. You can’t get cool. You can’t stop itching. ANYTHING touching your skin even lightly is reason to stop breathing and wish for death. Aloe? HA! The second a drop left the pump, my skin had heated it before it had a chance to sooth my skin. Then it was just a weird green lizard layer on top of the hot pink (or sometimes red) skin I wanted to crawl out of. God help you if your face, neck, and/or ears burned too because that meant even blinking was painful. The burnt skin is so tight that you can’t cringe because moving your facial muscles makes you feel like you’ll crack and peel right down to your bones.

But the alternative is to slather on the sunscreen as thick as putty. Multiple times throughout the day. Even if it’s a high SPF. Because your dermatologist explained that SPF is kind of fake after 35 (100+? not a real thing.) And that the SPF multiplied by the amount of melanin in your skin, which for me as a person with albinism is zero zilch nada zip, is the number of minutes it will last before you need to reapply. Oh, and you should buy new sunscreen each season; don’t use the leftovers from last summer. And wait for it to totally soak in before you go into the water. Also wipe your skin dry and smooth before reapplying – it won’t work if there’s chlorine or sand.

At some point along the way, I decided sun worship wasn’t for me. The pool, the beach, the open fields and meadows, the parks without shade, the sunbathing, the outdoor hoops, the backyard BBQs without porches or awnings – these aren’t for me. Of course, that limits a lot of socializing options in the summer, but I guess it’s okay because, unrelated to the albinism, I sweat like nobody’s business, so I’ll stay indoors where there’s AC or in the shade where it’s always a little bit cooler.

But it’s not only my skin that suffers under the sun’s rays. Another symptom of albinism is photophobia – literally fear of light, but for our purposes let’s call it extreme sensitivity to light. Natural and artificial light is intensified by the lack of pigment in my eyes because I don’t absorb it in the same way a person with darker eyes would. Most of the time, if I’m not wearing sunglasses, my right eye is entirely shut against bright light and my left eye is only a squint-y sliver, further inhibiting my already bad vision. Bright light can quickly cause headaches and even more quickly cause disorientation.

You’re probably thinking I should just invest in a good pair of sunglasses, but it’s not that simple, as nothing with me can be. The frames of sunglasses make my face sweat (hey, I did warn you I’m a sweaty beast. And now that I mention it, any type of lotion makes me sweat more than usual too. I’m gross!) When my face sweats, I break out like a teenager (another gross trait. Maybe I’m allergic to my own sweat?) Also, I like to see all the world’s colors, and sunglasses often tamper with the colors I see. Lastly, and inexplicably, I have problems eating when I have something on my face, glasses or sunglasses (what else would a person put on a face? Masks – can’t do it. Blindfold – that’s some kinky stuff for another entry. Lab goggles – HEY you shouldn’t have food in the lab because you could accidentally ingest toxic chemicals).

This is all to say that I loved taking a 25 minute walk outside through a tree-filled park, but I kept thinking that I want MORE trees, less intense sunlight, lower temperatures, *gasp* RAIN.

When I say I love London, people say it rains there a lot. I smile, knowing I was born in the rain. I love the woods. You can keep the beaches. I love the hammock strung in a leafy tree. You can keep the pool. Give me the green and gray, the trees, the intermittent showers or even the monsoons. I prefer some puffy white clouds against a blue sky anyway because when the wind rustles my hair, it’ll shift the skies too, giving me a minute of safety.