We sat in chairs arranged in a circle in a room about the size of a high school classroom. A man presided over the ring of high school students, designating the “head” of the group, with other facilitators and staff ranged around the outside of the room. I was jet-lagged, hadn’t yet converted to the way of coffee, and underwhelmed by the hype surrounding this conference. It was about to get worse.
“I’m going to ask you all a question,” said the lead facilitator. “You’ll each get a chance to answer, we’ll go ahead and start on my left and go around the circle. Ready? Ok, here goes.”
“if you could take a pill today to have your sight fully restored, would you do it?”
I was a little surprised at the number of kids who enthusiastically said “no,” they loved their blindness, their lives were pretty awesome the way they were. But I was intrigued. I didn’t hate being disabled, and it was nice to be around people who didn’t see it as unusual or pitiable. But when we got around the circle I was the only one who said “yes, I’d take that pill.”
For the next ten minutes both staff and students alike proceeded to shame me for having a bitter, unaccepting attitude toward my disability. I didn’t recognize what they were doing at the time; I argued back, and was really annoyed and disappointed that all their arguments were based on emotion, not logic. Not one of them actually disproved my points, they just kept telling me I’d be bitter someday if I didn’t change my mind.
It took me years to recognize the bullying and peer pressure that went on in that room, and others like it over the next two years. It wasn’t until this past year that I finally learned the term “toxic positivity,” where parts of reality are suppressed because, instead of empathizing with troubles, people will encourage you to death thinking positivity is the cure for pain.
So is it really any surprise that, though I became a Christian in 1993, attended church my entire life, witnessed to unbelievers, went on mission trips, taught Sunday school, lead prayer and youth ministries, and memorized over 800 separate Scriptures before I graduated high school, it never occurred to me to pray to have my sight restored?
Never once did I ask God to heal my blindness, to open my eyes. Not until 2015. It took another 3 years for me to ask someone else to pray for my sight, too.
I was taught by well-intentioned leaders in the blind community that hope for a cure ruled out the possibility of accepting one’s disability. They were presented as mutually exclusive options. They were also presented as feelings. If one felt hope, one couldn’t feel peace, contentment, acceptance. And hope would inevitably lead to disappointment, and disappointment to despair, and despair bitterness.
No wonder I joined the Dark Side
I didn’t want to be bitter. It’s a passive-aggressive attitude that harms others until they learn to distance themselves. You can’t show God’s love to others like that, and that’s what I wanted to do. So I chose acceptance and buried hope. After all, the eye specialist I saw regularly at the Oregon Health Sciences University had been telling me “we’ll have a cure in 5-20 years” for…about 20 years. There wasn’t anything concrete to set my hopes on, so I didn’t.
But one evening in July of 2015 my husband and I found ourselves having dinner with a couple who were definitely on the more charismatic side of the Catholic spectrum than I’d had any idea existed. My husband and I are Protestant, more or less evangelical in nature, and so this led to a fascinating after-dinner conversation about the nature of the Holy Spirit, faith-healing, and modern miracles.
Then these lovely people told us that they’d received a vision claiming God would begin to heal my sight soon, and they wanted to be part of that process, so would I mind if they prayed over my eyes?
What could it hurt? I thought. I said yes.
They did the whole show, laying hands over my eyes (with my permission), speaking in an unknown language (without translation), for a solid 2 minutes of intensely focused prayer. It was moving to see people so committed, so unrestrained in their hope and absolutely dedicated to wanting me to see clearly, wanting to be part of that experience.
For the record, I am actually slightly more blind now than I was on that date. No miracle happened, my condition progresses normally. I’m vaguely disappointed, but not too much so. It would have been nice, but if they’d actually performed a miracle today you might not have ever learned the term “blindfluencer,” because I made it up to describe myself. So, you’re welcome?
My husband and I talked over the experience on the drive home. At one point we pulled over and I called my parents to ask them if anyone in our family history had ever prayed over my eyes, either like that or less dramatically. They said some people had offered, early on, but that nothing came of it.
When my husband suggested we try it I dismissed the suggestion and changed the subject. It was reflexive, so smooth and instinctive that I didn’t really think about it until the next day. And then the next, and the next. I started asking myself why I’d never prayed for my sight to be restored, and the answer I kept coming to was “if it doesn’t work I’ll just be disappointed.”
So, what was so bad about disappointment? I asked my journal.
Disappointment leads to despair, despair to bitterness.
Hope and Acceptance aren’t feelings. They’re lifestyles.
Acceptance happens when I choose not to let tripping on a coffee table or embarrassing myself playing keep-away with my credit card at a cash register ruin my day or change how I view my disability. Acceptance is acknowledging when my disability is inconvenient, painful or limiting, and then choosing daily, sometimes hourly to put it in its proper place, a fraction of my life that fits into an incredibly beautiful, powerful whole. I can be frustrated with needing friends to pick me up if we’re going to hang out but still not hate my life or see myself as a burden because I’m more than blind, and blindness is more than inconvenience.
And hope? Hope isn’t a feeling either. It can be felt, but the absence of that feeling does not constitute hopelessness. I realize that I have hoped for a cure my whole life, whether I thought about it or not. I go to regular eye screenings at OHSU, I keep abreast of scientific advances that might benefit me. And in 30 years that has included mild disappointment, but not despair, and certainly not bitterness.
The equation is wrong. The path from Disappointment to bitterness isn’t inevitable. It’s just one path of many. I can survive disappointment. I know because I’ve been doing it every day of my life. Disappointment is a normal part of life, and to avoid it diminishes our capacity to accept it when it comes along. So, I learned to pray for a cure.
The first time I did it, I did it silently in my head. My heart pounded, my body coursed with adrenaline. And then I went on with my day. It happened the same way the first time I wrote a prayer for my sight in my journal. Years of fearing what change might happen to me if I gave in, physically absorbed memories of dire warnings and brow-beatings shook through my hands let out in little trickles as I took baby steps toward fully realizing my right to hope.
I have the right to hope for a cure.
I want to see 20/20 someday.
I cried the first time I asked other people to pray that prayer for me. I was wired like I’d had three cups of coffee in one sitting for the rest of that day. Nothing terrible happened that day, or in the four years since then. I live with more joy now than I could have imagined four years ago.
I have daydreams of what my life might be like in a future – or even a present – where I can see. I have an Amazon Wishlist of journals, study Bibles, and telescopes, and I’ve even allowed myself to write down some of these sight-dreams (always to be instantly erased, because eradicating fear of being shamed takes years).
Three things I want to do if – when – my sight is restored.
- 1. I want to create and organize photo albums that tell the interwoven narratives of my life.
- 2. I want to take a solo road trip across the US
- 3. I want to be able to sight-read from a hymnal so playing piano for church doesn’t required hours of practice and memorization.
I’ve got a list longer than that hidden in a complex file tree in Google Drive. I hope you can appreciate how hard it is for me to share this with you, even now. For as many advantages as it’s given me, the peculiar adulation and the unique introductions, getting to bring my dog with me everywhere, I wish I weren’t blind. But that wish doesn’t dominate more than a fraction of a percent of my thoughts in any given moment.
I don’t pray for healing every day, or even every week. I did for a while, partially as a ritual to cleanse myself of the fear of it. But now I only pray for it when it crosses my mind, which isn’t every day. How much of that is just because I have a lot going on, and how much is a lingering avoidance instinct I couldn’t venture to say. But if someone offered to pray over my eyes again I would say yes.
Three Reasons I wish I weren’t Blind
- 1. I want to be able to set my own work schedule independently of others’ schedule.
- I’d love to be able to run errands without taking up others’ time.
- I want to be able to read my own mail, a hymnal, informed consent at a doctor’s office, a menu at a restaurant.
I’ve found work-arounds, solutions, and consolations for each of these, and thousands of other problems. But each work-around takes time, and not just mine. I have the right to wish, to pray, that I could function as independently as anyone else.
I live hope with acceptance.
I pray for a cure with unceasing gratitude.
I acknowledge my pain, because denying it exists would never allow me to heal.