Heating Up the Holidays 3-Story Bundle(44)

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.”

Which is unfair, I know.

So after Dr. Allen and her measuring, I’m supposed to trudge across the courtyard to see my therapist, who I actually have to see every week.

My best friend back home, Neil, broke his femur when he was doing field research on the Ivory Coast, and when he came back and after all the surgeries, he had to do physical therapy for a year. He was grumpy and cranky that entire year, even more so than he was the six months he was in and out of the hospital all the time.

When I asked Neil, after having picked him up from one of his appointments, why he hated physical therapy so much, he said it was because it was a really hard workout where you were reminded every minute of how f*cked you were.

Neil is not a poet like my mom, but I think what he was driving at was that there is nothing worse than spending an hour or more a week banging your head against a wall while someone told you that you were “doing a great job!”

This week, Dr. Allen is finishing up with me and she invites me to sit down with her at one of the tables where her bigger instruments are.

“How is it at the lab?” She’s never one to tiptoe around a subject, Dr. Allen.

“Well, fine,” I say, because mostly, it is. “When I came in for this position in the lab I already knew I’d be refining images someone already captured for further study and doing a lot of writing. I won’t be doing new stuff at the bench until March, I think.”

“Remind me what your focus is?”

“Bacterial morphology plasticity.” Microbiology is really good at fancy words.

“It’s been a while since I’ve messed around with a microscope, Jenny, so bring me up to speed.”

“Well, I look at the evolutionary changes in the size and shape of bacterial cells. But I’m really psyched about what I’m doing in March because, someday, it might have clinical application. Basically, E. coli, when they’re stressed, become filamentous, which is a change in their shape. Stressed-out E. coli are dying, but large filamentous E. coli probably have a role in making it easier for other colonies of E. coli to live in stressed environments, like the urinary tract of the human body, where the body is busy trying to kill it off.”

“So you’re studying these stressed-out E. coli?”

“That’s the simple explanation, but yeah. The women in our family always had trouble with urinary tract infections, so I’ve had it stuck in my head for years that I wanted to do something to help people like my mom and her sisters, and me, actually.”

“What’s the spec for the project?”

“My postdoc’s renewable, and it’s a great lab. I’ll probably be working on this, barring any problems with my design, for five years or more.”

“The bench work? What’s it like?”

“Preparing samples and refining images from the electron microscope.”

Dr. Allen looked down at her digital tablet, but the screen was blank. “You’ve talked to your team.”

I was starting to feel shaky with where she was going with all of this. “About my diagnosis? Yes. They were supportive. I mean, at this point, I can do all the stuff I always do so the gist of it was basically, let us know what you need.”

She looks back up and meets my eyes. “I want you to know that you’re holding. There hasn’t been any significant change in your visual field since your diagnosis. Recessive-gene expression of this disease is kind of unpredictable, as you know. You’ve been working with Evan Carlisle the last three months?”

My occupational therapist.

Who drives me nuts. “Yeah.”

“He’s the best.”

“That’s what they tell me.”

“Evan told me that you’ve been struggling in therapy.”

Well, that was diplomatic of him. More like, I’ve been totally resistant to therapy. Which has surprised me, actually.

I am kind of a naturally compliant and cheerful person. Evan does not know this.

“A little.”