Guest post written by For Worse author L.K. Bowen
Debut author L.K. Bowen was born in Boston and made her way to Los Angeles to work in the entertainment industry. Like Ellie, her protagonist in For Worse, Bowen has the degenerative eye disease retinitis pigmentosa, which is slowly destroying her vision. To learn more about rp and other degenerative retinal diseases, or to contribute to finding treatments and cures, please visit www.fightingblindness.org
About For Worse: Wait Until Dark meets Gone Girl in For Worse, a debut thriller that pulls the reader deep into a dark web of sinister plots for marital revenge.
In my debut novel, For Worse, my protagonist, Ellie, is going blind. She has no peripheral vision, and no night or low-light vision. This is because she has a degenerative retinal disease called retinitis pigmentosa.
So do I.
For Worse is a domestic thriller about a vision-impaired woman trapped in a dangerous marriage with a man who uses her disability to sabotage her. Desperate to get out, she turns to the dark web, where she finds a ladies chat room where the women have a sinister but very successful method for “navigating a bad marriage.”
When I first started writing it, years ago, I resisted giving Ellie RP. I was fond of her, and didn’t want to burden her. But at the same time, for some reason, I couldn’t make her a non-disabled person. I felt the metaphor of her being trapped in her marriage would be bolstered if she had some issue that made her unable to drive, to literally get in her car and get away, and of course, that would ramp up the suspense factor.
But there was more to it than that. Before I knew that I was going to give her RP, I knew that I wanted her to experience the world the way I do, as a disabled person. I wanted to express what it was like to live with vision impairment, how it feels, the inconveniences, the embarrassments, the anger, the loss. I wanted to express myself.
I had initially started thinking about other issues that might prevent her from being able to drive: something neurological, like a traumatic head injury, or epilepsy. I did some research but I soon realized I had no right to appropriate someone else’s disability, certainly not when I had a perfectly good one of my own, one that I knew inside and out, that would require not an outreach for information but rather an inward journey to my own experience. In the same way that I had resisted acknowledging that I was vision impaired for far too long–not unlike Ellie–it also took me a while to realize that yes, I was going to write a novel about a woman with vision loss. And I understood that, though this was fiction, all stories, to be impactful, must somehow reverberate with human truth. And so I knew that if I were to serve the narrative, serve Ellie, that I had to give her the most challenging part of myself: my disability.
I remember thinking, I do NOT want to do this. I didn’t want to dive into that part of my personal life, the part that I held at arm’s length, that part that I preferred to think of as no big deal. I had already stopped driving, and I had been using a white cane for a few years. I was actually pretty well-adjusted about the cane. To me, it was like when you’re over 40 and have to start wearing reading glasses to see small print. (I’m over 40.) (I’m WAY over 40.) It was a tool to help me get around and I was fine with it. But as far as my emotional relationship to RP and the chunks it carved out my life, I didn’t want to go there.
Once I accepted that I was going to give Ellie RP, so to speak, things suddenly fell into place. I found this phenomenon several times while I was writing the book: frequently I didn’t want to give my characters a painful or emotional obstacle, sometimes feeling ill-equipped to do it justice with my writing, or simply not wanting to go there emotionally as the author. I soon realized this was usually a sure sign that the obstacle was exactly what needed to happen. And giving Ellie RP was exactly what needed to happen.
Blindness is a spectrum, and most people think that if you’re blind, you live in total darkness, or that if you’re vision impaired, you see things through a haze, or blurred. This is not always true. In my case, I’m very lucky. Yes, I have virtually no peripheral vision, so I can never see anything “out of the corner of my eye,” and I can’t see anything at all in no- or low-light. But my central vision, of which I have about five to ten degrees (a typically sighted person might have sixty degrees of central vision), is pretty good, about 20/35. I like to tell people that I have good vision, just not a lot of it.
I found that, through Ellie, I could explain what it was like to see the world through my imperfect eyes, something I never seemed to be able to do effectively with the people in my life. Want to know what the world looks like with this particular version of RP? Here’s what Ellie will tell you, and I agree:
“Ellie sees the world in sections, a tantalizing snippet at a time, from which she has to construct a concept of the whole. If she’s going downstairs, she can see the step she’s on and the one before and after; beyond that, she must suppose, there be dragons. She’s very careful going into an unfamiliar home or building since walls and doors and furniture lurch into her path unexpectedly, and if she’s looking into your eyes, she has no idea what your mouth is doing, though, bizarrely, she may be able to get a vague sense of the color of your shirt.
“Everything is better in bright daylight, and she can seem fully sighted, for the most part. She has all sorts of tricks for making it appear as though she’s like everyone else. She knows to look for the credit card handed back to her after paying for groceries; she can follow the line of a person’s arm when she’s first introduced, and a handshake is inevitable.
“But at night the lights go out, and she relies on her cane or the guiding arm of someone who doesn’t mind, or who minds but does it anyway. “
It was very satisfying, writing that, the nuts and bolts of everyday traveling through space with a degenerative retinal disease.
The harder part was writing about how it feels. And as I wrote, with an increasing feeling of relief, I discovered emotions I could not have verbalized even to my therapist (and I love my therapist).
I was surprised at how Ellie illuminated my own feelings about having vision loss and how I am perceived by the fully-sighted. I felt–feel–expressed by her, and hope that what I wrote in For Worse will resonate with other people who live with a disability.
Being vision-impaired means you can’t drive. Want to know what it’s like to have to rely on other people to get around? Here’s Ellie (and me, too):
“Since Ellie stopped driving several years ago, [family members] have repeatedly told her that they’re there for her to run any errand or take her anywhere she’d like to go. And then, of course, when she took them up on it, they’d either put her off, want to do it themselves, or make it clear she had fifteen minutes before their heads would blow up while waiting for her. Ellie remembers sadly the days when she could just drive over to Bed Bath & Beyond to pick out a dish towel, then hang out and look at bedding for forty-five minutes, and then maybe, if she felt like it, go get a cup of goddamn coffee. Without her own transportation, she was always accountable, to whoever drove her, dropped her off, or picked her up. It was suffocating.”
There is loss, here, and not just that of Bed Bath and Beyond (which in and of itself is tragic). There is loss of independence, freedom, the simple joy of hopping in the car to just get out.
Here’s Ellie (and me) on the decision to stop driving:
“She can’t remember the trigger that made her give up the keys to her Camry; it may have been the time she missed by inches a mother with her stroller in a crosswalk, which was bad enough without the self-righteous prick coming from the other direction, who loudly thought she (and everyone within a two-block radius) should know what she’d nearly done through her stupidity and carelessness. Shaking, she wanted to yell back, ‘I’m vision impaired, you prick!’ but that’s not a good thing to announce if you’re driving. “
(This actually happened. Putting it down on paper has somewhat eased the guilt and shame.)
“It was a Saturday when she finally [decided] she was going to stop driving….She knew she was relinquishing something that was terribly important, and yet, despite her emotion, she didn’t think the decision would be anything other than inconvenient at best, frustrating at worst. Words like humiliate, trap, infantilize, and marginalize didn’t crop up till later.”
Those are powerful words, and I never would have dared to use them in my real life. But it was empowering for me to give them to Ellie; they were the truth she had to crawl out of, and I was proud to use them as an expression of her situation and also a catapult for her impending freedom.
A friend said to me, while I was writing the book, “It must be very therapeutic for you,” and I privately bristled at this. I was writing a novel, a work of fiction for publication, and I wasn’t doing it for therapeutic purposes. I was not working through my grief/anger/loss issues about going blind through this book. And yet…I kinda was. I did find it incredibly freeing to finally be able to express my feelings about living with failing vision. As I struggled in real life to work out logistics that most people take for granted–getting a ride to work, finding a restroom, managing crowded sidewalks–I loved getting back to my laptop so I could give Ellie (jeez, poor Ellie!) the same experience and let her be as pissed off and frustrated as I was. I had a buddy.
In the book I’m writing now, there are no characters with physical disabilities. I still feel funny when one of them just gets in a car and drives, or navigates a busy museum. I envy people who can walk freely through life with all the visual information they need, so they don’t fall over or bump into stuff. But I’m finding that there’s something satisfying in writing characters who have that ability. I can walk freely with them.
Someday, I’m going to write a book about the thing that really frightens me about going blind, beyond the inconvenience and marginalization: having to live in darkness. That scares the s**t out of me. Perhaps that book will be “therapeutic” for me.
But for now, I’m content with my girl Ellie, and proud to have in print our mutual struggles and triumphs as we navigate our truncated world with as much grace as we can muster.
