Blindness and Disability, Music, Samples, Writing

Warding Off Eclipses with Sex and Music: A Memoir Chapter

My Binder Cover
My Binder Cover

I was fourteen. I was an alternative rock goddess. I’d found Nirvana. I was in love with a dead man.

I sat with my brother Randy, my neighbors and my friend Lissa from blind camp in the very back of the backyard on pink plastic chairs. “So, which would you rather do?” said Ryan from across the street, turning to me. We were playing Questions. “Have sex with Kurt Cobain for one hour, Eddie Vedder from Pearl Jam for ten hours, or the guy from Silverchair for twenty hours?”

I was a loyal girl. “Kurt,” I answered without a thought. “Okay, Lissa. If you were going out with a guy and he wanted to 69, would you do it?”

Continue Reading–>

~~~

Hahaha, so, it only continues from there. This chapter was published in Shark Reef a few years ago and so is also available through the Published page on the site, but I know sometimes those things can be hard to find so I thought I’d bring it out for this week’s writing sample. Fair warning: it’s not a particularly easy read. Still though, I once was reading a passage from this piece at an Open Mic type deal and was laughing so hard I was crying and could barely read and almost peed my pants.

As always, for more writing samples, you can always check out the Samples page. There’s also a section for Published and Early Work (most of this latter section is downright mortifying, but you know, oh well).

~Chrys

Blindness and Disability, Samples, Writing

Constant Eclipse: A Memoir Chapter

chrys_boweryclub1bI was scared that Mom or Dad would kill me in my sleep. Dad was an FBI agent and he had a gun that he sometimes kept in the house. I thought even he was afraid of Mom, who screamed all the time, got hysterically mad and spanked me when I was little. It was her I listened for as I laid in bed in my thin yellow nightgown, reading Nancy Drew by the light of my night-light, while I tried not to think about getting murdered.

My parents’ bedroom door opened and I heard Mom’s sharp footsteps in the hallway. They sounded mad. I waited curled on my side with the book under the covers and screamed No, Mom, No! inside my head. If either of them came for me tonight, I’d jump out the window. I didn’t care that my room was upstairs. I’d jump anyway, land mangled on the driveway and run across our yard as fast as I could. I’d pound on our next-door neighbor’s door. If she answered, I’d tell her my parents were chasing me and beg her to protect me. If she didn’t believe me, I’d run faster and pound harder at the next house and go through the neighborhood with wild desperation until I found someone who would keep me safe. It might not last. My parents might follow me, shoot into the distance or use the authorities to take me back, but that was like the second story window and the driveway; if I wanted to survive, I’d have to think about it later.

The bathroom door opened and Mom went in. I kept freezing. She finally stalked back to her room and I breathed. The quiet lasted a few full chapters.

I got up and went to my window. It faced the driveway and our front yard with its giant tree. The moon was out, maybe full, I couldn’t tell. It was big and white and round and it cast shadows through the branches onto the grass. I had a huge feeling of dark and mysterious magic in my chest. If I could touch it, it would be like touching my soul. It would make me huge too, and magic. I stood watching the moon, the tree, and the shadows until I was finally tired.

Continue Reading–>

~~~

Yeah, it’s just a little dark, I know. This is what I was invited to read at “The Best Memoirists Pageant Ever” at the Bowery Poetry Club in NYC in 2007.  So the picture is from that event. Fun times.

Fun fact: I was kinda freaking about reading this piece out loud and so a good friend had me read parts to her beforehand, and from the first sentence we were laughing our asses off. It’s not really funny, it just somehow struck us that way. Sometimes all you can do is laugh. And that’s okay.

Check out the Samples Page, as well as Published and Early Work, to read more of my writing!

~Chrys

Blindness and Disability, Science

When You Are Different, the World is Full of Ignorant Morons, Especially on Twitter

I’m sorry to break it to you if it’s news, but it’s true.

000022671As I’ve mentioned on here many times before, I have albinism. This means I have no pigment and I have low vision but in all other aspects, I’m just like everyone else. Just like other albinos, other people who are blind and visually-impaired, othere people with other disabilities, or who may look different or be classified that way for any number of reasons.

People with albinism do all the things other people do. Well, except tan, I guess. But we live regular lives, unique to each individual. We go to school for all kinds of subjects, we play sports, work as copy-editors or fashion designers or teachers or web designers or scientists or dance teachers or classroom/academic teachers or musicians or roofers or fundraisers for nonprofit organizations or business owners or event planners or pediatric ICU nurses or…the list is endless. We date, have random hookups, get married, have kids. Some of us drive (I don’t). We travel around the country and the world, with others or by ourselves. We write, sing, dance, draw amazingly good cartoons, get politically involved. Some party and like to go to rock concerts. Some go hiking and camping and do all kinds of outdoor activities. You get the idea–the wide variety of activities, lifestyles and interests are the same as anyone else’s.

Continue reading “When You Are Different, the World is Full of Ignorant Morons, Especially on Twitter”

Blindness and Disability

If You Were Blind, Would You Cut in Line?

Roller Coaster

This is something that is often–sometimes hotly–debated in the blind community. A lot of times, when you go to amusement parks, if you carry a cane you can cut to the front of the line and go first on all the rides. The last time I was at a leadership seminar for the National Federation of the Blind, we had a roundtable discussion about this issue, what we thought and what our experiences had been.

This is something I never really encountered growing up. My family went to amusement parks pretty often, but since I don’t use a cane, no one ever approached us and invited us to the front of the line, except maybe when we went to Disney World, I have some vague memory that it may have happened then.

Continue reading “If You Were Blind, Would You Cut in Line?”

Blindness and Disability

Blind Encounters

When you are blind or visually-impaired, it leads to some experiences that are a bit out of the ordinary. That probably goes without saying, and I just thought I’d share a few.

One of the most common is what I call the “state the obvious” encounter. You’re on a bench waiting for a bus, in a cafeteria, at an office, in a classroom, at a coffeeshop, riding a subway or a ferryboat and a complete stranger comes along and states the obvious. “You’re reading really close up.” “Your eyes look weird.” “Wow, your glasses are really thick.” “You’re blind!” “Is that a blind dog?” (to which some people, hearing this over and over, learn to reply, “I sure hope not!”).

Or there are the oddball questions. One time I was reading a quote on a small piece of paper, close up, and some stranger asked me, “Oh whoa, are you listening to the paper? That’s so interesting.” What?!

Continue reading “Blind Encounters”

Blindness and Disability, Samples, Writing

Albino – Seeing and Not Seeing 2

When I was maybe five years old, my mom was convinced I couldn’t smile right. I studied her mouth as intently as I could, then stretched my own into the same shape. But one lip or the other was always too high up, too pulled down, turned too far in or out. I tried to work these corrections into my face muscles but I could never see my mom’s smile in enough detail to craft my own to look like everyone else’s.

Crystal Structures of Tyrosinase

I have albinism, a recessive genetic condition that results in skin, hair and eyes that are paler than pale, and legal blindness. An enzyme called tyrosinase that converts the amino acid tyrosine into melanin pigment is inactive in albinism and this leads to the whiteness and blindness. The visual impairment of albinism, though steady and consistent, is murky territory—I’m too blind to drive or read any of the letters on a standard eye chart except that top “E” but not so blind that the world isn’t intensely, sensually, visual. In the blind community, I am what they call a “high partial.”

Around the same time as smile training, my blindness was a dull but ever-present emotional ache. On the playground, kids ran up to me and called out “whitey” and “snowball” and “ghost,” waved their hands in the air and asked me how many fingers they were holding up, mimicked my ambling eyes. As I got older, the teasing involved spitballs, a kid who jumped out in front of me in the hallways and yelled, “Watch out, brick wall!” and the boys in eighth grade who stole books out of my locker and set them on fire.

Sometimes, in my room, away from the teasing by my peers but alone with the scenes replaying in my head, the ache would erupt into a scalding, white-hot rage. It was so unfair that out of all the people I knew in my family, in school and around town, I was the one who ended up albino. No one saw anything beyond my albinism. I felt like a ghost.

~~~

Another sample from my essay “Seeing and Not Seeing.” Here’s the previous excerpt from the same essay. I have to say, this piece above is the very beginning. The essay doesn’t end in this same place or mindset.

~Chrys

Blindness and Disability, Samples, Writing

Reading Eyes and Faces – Seeing and Not Seeing 1

eyeimagesAnd faces—nothing has given me more trouble. Eyes, those most important details of a face, are too small to make out unless I am close enough to make out with someone. I didn’t know what color my last boyfriend’s eyes were until after we had been dating for almost six months. Whenever we were close enough for me to discern their color, he kept his eyes closed. I didn’t see his eyes until we were riding a city bus on our way to a concert on an early May evening, squished next to each other on the seats. He turned slightly to me, the light was just right, and I finally saw out of my right eye that his left was brown with textured traces of gold, simultaneously soft and hard in color.

Last year, I was watching TV on my 24-inch computer monitor, sitting less than a foot away, and saw a close-up of someone rolling her eyes. At thirty, I was seeing that gesture for the first time and it was nothing like I had imagined. Inspired, I wanted to get a glimmer of what it is to read feelings in eyes, so I watched Grey’s Anatomy, scrutinizing characters during emotionally wrought scenes, their faces taking up my whole screen. Though I felt all the feelings from the context, the music, the minute changes in pitch and inflection in their voices and the larger facial gestures, I could see nothing in the eyes.

~~~

This is an excerpt from an essay in which I explore a few different aspects of albinism and blindness.

You can check out other Friday Samples here. And don’t forget you can always check out Published and Older Works for more samples.

~Chrys

Blindness and Disability, Science

A Blind Girl in Science Labs

I belong to a lot of mailing lists for blind and visually-impaired members, including blind students, blind people interested in science and engineering, the blind of Oregon, the blind of Portland, and so forth.

One thing that comes up over and over again on these lists, especially the student and science ones, is difficulty with science labs. Maybe a student needs a year of a lab science for their general education requirements. Maybe someone wants to go into science but doesn’t know how to handle labs. Maybe the students know they can find ways to do the labs but the professors or the schools don’t.

It can be really intimidating so I thought I’d take some time to write about this here. I also think a lot of sighted people, once they see or hear about a blind person doing science labs, want to know how it’s done but might not feel comfortable asking. So this is for blind and sighted alike.

Continue reading “A Blind Girl in Science Labs”

Blindness and Disability, Samples, Writing

Possibilities – Blind Conventions 1

NFB Convention, Detroit 2009

The first few days of convention are filled with Division meetings, meaning that instead of meeting as a huge assembly (that will come later), at any given time there are several different special interest groups meeting at once. Parents of blind children, blind parents, seniors, diabetics, piano tuners, ham radio operators, lawyers, antique car enthusiasts, crafters, technology buffs, they all have divisions and meetings. There are also meetings for new members, presentations from different schools for the blind, presentations by guide dog schools where you can “test drive” a guide dog, meetings on how to build up local chapters, demos of new adaptive technology, plays put on where the directors and actors are all blind, salsa dance classes taught, attended and deejayed by blind folks, a mock trial put on by blind lawyers and the list goes on. We take frequent breaks in our room because the stories are true, it is a little overwhelming.

There’s also the Independence Market, a technology and adaptive aid exhibit hall in one of the hotel ballrooms and it is something to behold. Along every inch of every wall, and through several makeshift hallways in the center, there are endless tables and displays, each draped in a different company logo. Most of the booths feature technology items—braille notetakers, digital book readers, screen-reading software packages, handheld iPhone-shaped gadgets that act as magnifiers and also play music and videos. Apple is there with the real iPhones, which are accessible right out of the box, the new technology rage among the blind. There are several flavors of talking medical supplies, every size and shape of magnifier and audible GPS devices. There are random non-techie booths, like the FBI doing job recruiting, and a booth selling Braille Bibles brailled in over 27 languages, including several Indian ones like Hindi and Malayalam.

I go by myself to the science and engineering division meeting, where I meet people who are interning for NASA and a totally blind girl who’s majoring in biochemistry who guesses people’s heights (while they are sitting down) by voice. Even though I’m slightly slouching, she guesses my 5’7” spot on. The NASA thing gets me. When I was younger, I thought I wanted to do something like that when I grew up, but back then my visual impairment would have been a deal-breaker. That’s one of the great things about a convention like this: you get to really see that things are changing, that blind people are making inroads and finding success in all kinds of careers and hobbies.

~~~

This is an excerpt from the essay “Blind Conventions,” a recounting of my first experience at a blind convention held by the NFB. This piece is apropos because I’m currently en route to my 2nd NFB convention. I’m sure there will be lots of fun crazy, funny, weird and inspiring stories that I’ll be tweeting along the way! These conventions are always surreal.

You can check out other Friday Samples here. And don’t forget you can always check out Published and Older Works for more samples.

~Chrys

Blindness and Disability, Samples, Writing

My Face

I can’t read the nuances of faces but mine is a direct display of every undulation in my emotional current. My face is a one-way mirror.

Still, others often don’t see my personal, particular face.

People sometimes asked if my albino friend and I were twins. We were nine years apart and my face was longer, drawn while hers was rounder, more full. Worse yet, at an albinism conference, my dad came up to the girl next to me and told her it was time to go, mistaking her for me.

My face is at once expressive, transparent and invisible.

~~~

This is from a class I took called Personal Essay Writing. The assignment was to write about your face in EXACTLY 100 words. No more, no less. It led to a lot of obsessive editing.

You can check out other Friday Samples here. And don’t forget you can always check out Published and Older Works for more samples.

~Chrys