These Five Years: Part Two

It was a not so starry night.

If you’re just joining me here, this is Part Two in an on-going series chronicling the five years I’ve been writing fiction. I shared Part One last week. Thank you for coming along for the ride!

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The first draft was done, and like every good INFJ, I had a plan. It was simple:¹

1. Print the book

2. Let it sit for six weeks

3. Read through without editing

4. Read through with pen and post-its

5. Revise

6. Send to Beta Readers

7. Revise again

8. Find an agent

9. Get a book deal

10. Publish the book

I had the audacity to believe I could condense the calendar to a mere checklist of milestones, and I’d be on step 8 by fall.² Had finishing a first draft of a novel from All Saints’ to Saint Valentine’s Day boggled my sense of time? Absolutely. Had I been well-trained to set BHAGs throughout the course of my undergrad and graduate schooling? You betcha.

And I was headed straight for the moon.

Except, I did not land among the stars. 

I burned and raged and thrashed in their stead.

I thought these things were annoying until I got in front of a slit lamp.

“I’m sorry to tell you it’s Uveitis,” my optometrist said, two weeks to the day we returned from the city and one since I’d had the book printed and bound at FedEx. Step one, check.

An hour before this I didn’t even have an optometrist. Now I was the kind of person who said “my optometrist” and could soon spell and say, “my ophthalmologist” without batting a partially-blinded eye. 

Three days before, on a Friday night, I found myself wincing at light fixtures. Soon my right eye was blood-red and my vision blurred. By midnight, it hurt to open, even in the dark. Nothing touched the excruciating pain, not even the antibiotics prescribed to me at the walk-in clinic the next day.³ Through a fortunate series of events that Monday morning, I sat with the first of two women whose compassionate care saved my vision, in the end. But we aren’t there yet.

“That’s how it’s pronounced?” Words I’d meant to say only in my head, breathed in a stunned whisper.

“You’ve heard of it?” she asked and sat down beside me.

“Google,” I said, my voice catching.

“So you know, then?” She put her hand atop mine.

“I have no idea,” I relented, and the tears began to fall one after the other.

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What happens when you find out you have uveitis, if you’ve consulted Google at any point, are that the words BLINDNESS and PERMANENT VISION LOSS flash again and again behind the eyelids you try to shut out the pain with. One of my most-prized senses, half-gone in an instant.

When I reflect on the three year and three week journey with uveitis that I was to go on from diagnosis to discharge, I think perhaps the details themselves deserve their own place. To share them right now would require bedazzling what was a dark, raw terror that gripped me, many days, especially in the beginning.

I’ll save that for another time.

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The next few months were a literal and figurative blur. That life would ever be normal again seemed impossible. I couldn’t read. I watched The Durrells in Corfu, in bed, and cried every time Larry sat down to work at the typewriter. I walked through Walt Disney World with my eye dilated 100% of the time. I wore sunglasses everywhere, even bought myself a patch.

I imagined Vincent and his mangled ear in the asylum at Saint-Remy-de-Provence. I went to The Frist to look blurrily out his window, again: a view on loan from the Virginia Museum of Art.

Wheat Field Behind Saint-Paul Hospital, by Vincent van Gogh (1889)

I told God I was angry at him and felt his nearness in reply.

Our second floor guest bathroom flooded, water destroying so much in its wake, and my eye flared hot from the stress. I potty-trained a toddler. We moved out of the house for a month while it was put right again.

But would I ever be?

“Want to come to Ash’s final performance?” my stepsister asked. A lifeline text in the middle of the mess. “You can bunk with us in the hotel. We can spend some time together.” I felt a glimmer of something like hope.

My niece had spent the summer in a Juilliard intensive. Watching her dance puts molecules into alignment inside of me, and I soar. I needed that feeling, again. Needed to pack my manuscript and tattered hope in a bag and take flight, somewhere, anywhere.

“Please,” I texted back, “I would love that.”

Juilliard’s dean and director of dance, Alicia Graf Mack, has Ankylosing Spondylitis. AS is one of the few diseases which can lie behind the presentation of the symptoms I’d been dealing with for months. It was uveitis that finally led Alicia to a proper diagnosis for her decade long battle with pain. My own case was Idiopathic; after extensive testing and no other symptoms, no cause was determined. Lingering, though, was the question of what lurked inside of me, sabotaging my vision.

Watching Alicia lead and guide these dancers, though, in this art she so loved and embodied, woke something up inside me. She’d come through, and perhaps, so could I.

I read my book. I stood with my Wheat Field for the third time in just over a year, but my first time alone. I wept openly in Gallery 822, grateful for sight. I watched Ashlynn dance, drank my favorite coffee, and walked cobblestone streets with curiosity and awe. Meanwhile, the city breathed life into me and into the story I was reminded I couldn’t quit.

A few weeks later, we put our second child into kindergarten and our youngest started preschool. For the first time in almost eight years, I had twelve hours to myself during the week. I’d finished my first read and by September, with highlighter and marker, post-its and pens, I began to work and rework the novel that wouldn’t quit me.

What can I say, I like color.

I began to rewrite the book in first person, giving other characters their own voice. I further built out the world and time period of a place I hadn’t ever been, but dreamed constantly of going. I excavated a deeper, truer understanding of who my characters are and what they needed to tell me. I made very slow, but steady, forward progress.

I even went back to the city.

I know, I know.

When each of our kids turns eight, they get to take a trip to a place with a parent of their choosing. As fortune would have it, our daughter picked New York City and me. Being there by her side, when the days were short and the holidays lit up an already glittering city, was magic. Exploring the city with her gave new and necessary dimension to the book when I got home.

Through that winter I still awoke some days with a simmering dread of the moment I opened my eyes. I still checked my eye in the mirror every day. But we had a plan and we worked it. With meds and monthly appointments, I inched my way back towards vision, in life and in work.

By the first of March (it’s now 2020, if you’re tracking), I felt out of the dark. I’d picked up momentum on my revision and felt myself barreling towards the next finish line, only to — well, I think you know what happens next.

Today, when I look at a clear sky in the day, the scars still appear in my view like constellations. At night, my vision is clear. It’s funny how that works.

David Whyte in his poem Sweet Darkness, says, “the night will give you a horizon further than you can see,” and I believe it.

We’ll explore the next horizon in These Five Years: Part Three.

Until then,

1. Don’t worry, I laugh, too.

2. Still laughing, I know.

3. It was very much not pinkeye.