Heating Up the Holidays 3-Story Bundle(49)

I don’t tell him that I take one bus line, the one that I worry about missing, every morning, because it’s the line without any transfers and I’m not sure about transfers yet. Sometimes I wake up in the middle of the night, terrified I’ve overslept and I’m going to miss that bus.

I don’t tell him that I get all of my groceries at the corner store three straight blocks from my house. Or that my whole life I was a vegetarian, but it’s too hard to find good options at the corner store so I’ve started eating meat again.

I don’t tell him that I talk to my mom every day on the phone and that sometimes, I make her talk to me after I’ve gotten in between the covers and that she talks me to sleep.

I don’t tell him that I miss museums, and concerts, and getting tipsy enough at bars that I’ll sneak a drag of a friend’s cigarette, or cool restaurants, or coming back from the bathroom during a movie date with an extra button undone so your date notices and tries something.

I couldn’t manage the aisles of a dark theater, now. The crush of bodies in a dimly lit bar. The strobe lights at a concert.

C, I can manage.

His words are lit and bright and framed into the square of the laptop screen.

C is hypotheticals and light. Pictures of the world I’ve been missing.

I can fix him on this little slide of a life I’ve made and figure him out, slowly, as the magnification increases, as I catalog the bits and pieces he shows me and think about them in different combinations, or simply label them—C doesn’t take pictures of people. C lives next to a couple who keeps goats right in the middle of the city.

C can make me come just by telling me he will stay online while I touch myself in the dark, by telling me that he’s touching himself thinking of me with my hand between my legs.

He’s right in front of me.

I can see him, as long as neither of us moves and keeps the focus where it is.

I think my best bet is to keep still and let the snow fall, let the days get long again, the light return its hours to me, a few more chances a day to figure out what it is I can comfortably keep in front of me and see.

For me, there isn’t some miracle cure, this is my life, or my disease will progress and my life will change focus again, and I’ll have another new life.

I need C to stay right where he is because for now, I don’t know enough to move from where I am.

My hypothesis is that the light will come back, both outside and inside me.

I’m afraid and angry, but the light is a theory I want to prove.

Until then, I just have to keep the experiment going with as many controls as possible.

One bus, back and forth.

One store.

One man, his words under glass.





Chapter Three


Break in the Weather


After all the doctors, I got assigned one doctor, this crazy-smart woman who actually is an expert in visual-field vision loss and double-majored in anatomy and micro in undergrad so we have sort of a common ground, or at least, she totally gets why I have a mug that says EAT. SLEEP. MICROBIOLOGY.

I see her every other week and she has me on really high doses of vitamin A and a supplement called lutein that has been demonstrated to slow the progress of my disease.

I go in, we visit, and she asks about my research, then she measures my visual field, which is mostly done with a big machine I sit down and look into, but Dr. Allen always checks me again, by hand, with a semicircular cardboard meter and string.

Retinitis pigmentosa is an inherited disease where the light-sensitive rods of the retina degenerate, leading to gradual and progressive night blindness, smaller and smaller central visual field, and loss of peripheral vision, until the patient is left with only a very tiny central field of vision and no or limited peripheral vision.

Or has little functional vision left at all.

You don’t know until you get there.

I inherited a recessive gene, so no one my mom or I know in the family has it. Mom even called my dad’s parents, and she hadn’t talked to in years, to ask. My dad died when I was little, but hadn’t been in my life before that. After my mom got pregnant, he became kind of hard to pin down.

My night vision has undergone the most dramatic change, even more so than the degrees of peripheral vision I’ve lost. I might have noticed my changing vision sooner, but I rarely drove at night in Seattle, rarely drove at all since public transit is decent, and at night, the places I was out with my friends were well lit. And yeah, I stumbled around the house in the dark but chalked it up to my natural grace.

That’s where physical therapy comes in, or really, occupational therapy, where the occupation I’m supposed to learn is “activities of daily living,” in other words “relearn how to do all the stuff you did before, but in more difficult and convoluted ways.”