Cosplay Canes Conquer Anxiety

Did you know cosplaying can be good for your mental health?

Half a dozen people in fantasy-style medieval costumes sit around a wooden table. Anneliese, in a long blue vest and faun antlers, is on the right, facing the camera.

As a fantasy writer I feel I finally have a legitimate excuse to spend time and money on grown-up dress-up. It’s a new hobby I’m just beginning to explore, but one that I’ve appreciated from afar for quite some time. This past summer I had the chance to meet up with a regular group of cosplayers for a themed tea party at my favorite café. It wasn’t just fun to stroll around in a jerkin and horns and make new friends, it unexpectedly provided me an unlooked-for opportunity to tackle some blindness-related insecurities.

Part of my experience as a blind person has been wondering how people perceive my physical shortcomings, like my inability to navigate around furniture without ping-ponging off the edges or my tendency to slam my shoulder into door frames on my way through. I run into people, have a hard time determining what is and isn’t a line waiting at a register, or determining if there’s space to go around a group of people in my way, or if I should just try to slip through them as subtly as anyone with a long white cane can.

I wonder if people’s frantic attempts to clear paths for me, constant apologizing when I’m the one who bumped into them, and inordinate praise for successfully performing daily tasks is compassion or condescension. Do we as a society perceive coordination as courtesy, unless provided with mitigating circumstances? What would these people think if I didn’t proclaim my excuse card by walking into every room with a reflective cane or a harnessed German shepherd?

I wasn’t thinking about any of that, though, when I decided that a leather-wrapped bamboo pole felt more period-appropriate for my costume than the graphite stick wrapped in reflective material I normally carried. I donned my jerkin, horns, leggings, and un-authentic flats (I’m on a budget), grabbed the bamboo, and headed out to the car. And literally ran into two problems right away.

#1        Wearing extra appendages such as horns, tails, or wings can render my finely tuned proprioception irrelevant. The doorframe of the car nearly took my horns off as I slid into the passenger seat.

#2        Bamboo doesn’t fold up as conveniently as my normal cane. The car was bigger than a shoebox, so we were able to fit the pole in the back seat just fine, but I began to realize this might be more complicated than I’d imagined. Would I be able to find somewhere to stow it at the coffee shop where it would be easy to grab but not trip anyone else moving around the table?

The Dragons Forge café is exactly what it sounds like, except when it comes to size. As cozy as the name might sound, it actually occupies a large, airy space in the Lowe Mill Arts and Entertainment building, a historic factory converted into an arts community. I had no trouble finding somewhere to put my make-shift cane during the event. But before we even made it to the café’s 2nd-floor location I ran into another problem (figuratively his time).

As my co-author and best friend Galadriel (yes, that’s her real name, check out her book here) rode the old freight elevator and walked through the wide, high-ceilinged hallways I found myself growing more and more tense. I was listening harder than normal, trying to perceive quiet conversations around me over the noisy fans trying to keep the Alabama heat at bay..

Were people cursing at me for tripping over their feet? Was that guy offended that I grazed his shoulder turning that corner? Are those ladies wondering why I apparently can’t walk in a straight line without my friend grabbing my arm every few seconds/ I realized I was just holding the bamboo stick loosely in my hand like a staff, not using it like a cane. It didn’t feel like one, so my brain hadn’t automatically put it to use. I made a conscious effort, and had to keep doing that to maintain the rhythm and angle I’d learned so well more than fifteen years ago.

We reached the café, found our group, and settled in for a fun couple of hours. We spent most of the time in character, and I learned I wasn’t the only first-timer there.  I started to relax and have a good time. It was exactly how I’d wanted to spend the day, with people who shared my interests and enjoyed new experiences and new friends. The background music made its inevitable journey from atmospheric fantasy tracks to the Lord of the Rings soundtrack, and it was about time I got myself a White Dragon.

I retraced the by-now familiar path to the counter, performed my usual trick of asking the air in the cashier’s general direction if there was a line, and discovered there wasn’t. By the time I finished ordering my White Dragon, a vanilla latte with almond milk, and a bowl of tavern stew, though, several people had decided I had the right idea and were loosely clustered behind me, ready to witness and judge the dreaded cash-register Exchange.

This interaction has made me anxious since my mom first physically pushed me toward a counter, sometime in middle school. She’d already tried encouragement and firm words, but recognizing that my body was locked up in fear and not wanting me to let that limit my future, she gently shoved me forward until I stood at the register. I got through handing the cashier my cash with shaking hands and a voice barely above a whisper. Though the purchase of…whatever it was back then…went smoothly, the anxiety didn’t ease for years.

But I had a cane, people could recognize why it might take me longer to fumble my way through this every-day activity. Id’ be fine. So I ordered my stew and latte, pulled out my credit card, and felt along the counter for where I knew the little card reader usually rested. I got the card in the slot, it began its usual mysterious series of beeps, and I gave the cashier a chagrined smile. “Sorry, I’m blind. I’ll need help with the touch screen.”

“oh, yeah, I can’t see anything without my glasses, either,” the cashier said. Nothing happened.

“No, seriously, I’m blind, ‘ I finally realized she hadn’t understood. “I can’t see the screen.” I went to gesture with my cane, the top of which ought to be very visible over the counter – and suddenly realized why the cashier was confused. I didn’t have my cane. I had a leather-wrapped bamboo staff that went great with my medieval Tiefling costume.

The lovely cashier and I had a good laugh over the incident, and the people behind me chuckled a little, too. But you know what? I didn’t remember that detail of the story, our communal amusement, until I sat down to write this post.

I rewrote this post three, maybe four times, trying to appropriately capture the anxiety of not having my excuse for clumsiness recognized. Let’s ignore, for just a moment, how much that need for an excuse says about my inner perfectionism, though. Instead, I’d like to show you another aspect of anxiety, how it can actually change our long-term memories.

Studies have demonstrated for decades that engaging in visualizations and daydreams stimulate the sensory processing function of the brain in the same way that actually walking on a beach or going down an endless flight of stairs would. The brain can’t tell the difference between a good daydream and a real experience. This is one of the reasons that visualizing a positive outcome to a future stressful experience can make you feel more confident. The brain thinks it’s already succeeded, so what’s left to worry about?

But it also works the other way around. If you spend a lot of time meditating on what could go wrong, on your worst fears, your brain will consider that part of reality, process it like a real experience, and attach it to other relevant stored data. So when I combined the awkward credit-card exchange with my lack of cane and my fear of others not understanding why I couldn’t function the way they did, my brain inserted mutters and whispers behind my back that never actually happened!

Something felt off when drafting this post. That’s why I kept writing it. I’ve learned to trust that instinct; it’s what’s going to give you guys a fantastic character-driven nautical fantasy novel in a few weeks. When I feel that “wrongness” I know something in my writing needs work. So I took my hands off my keyboard, went upstairs to make a fresh cup of coffee, and meditated on the experience I was trying to describe.

I found I had two conflicting reflections on my experience. I could remember the tension, the stress, the embarrassment. And I could remember laughing at myself, enjoying a communal joke with people who had their own cosplay mishaps, and being vaguely surprised that things had gone as pleasantly as they had. Knowing that I had a history of assuming the worst I could pretty easily determine that the mutterings were the false memory.

But that meant that the moment of humorous fellowship was reality.

No one had muttered or cursed or shifted impatiently or let out long sighs of frustration while I navigated the mundane obstacle course of the cash register. Not a single condescending “oh bless your heart” came out of anyone’s mouth. Instead there was friendly laughter that I initiated because I had genuinely been amused by my own forgetfulness of the familiar symbol of my cane and how much I thoughtlessly depended on it. I’d learned something interesting about myself, and others, and we’d all appreciated the uniqueness of the experience.

A lot of freshly blind people struggle with the publicity of the cane. It declares your disability for all to see, plasters “I need help” on your front and back. It can feel humiliating, especially if you’ve lived forty years with the illusion of independence that being able-bodied provides. But if you never pick up that cane you’ll never give yourself the chance to disprove all of your dreaded assumptions, all the fears fermenting in the back of your mind and actively changing how you see the world.

I don’t want to imprint false memories of rude, patronizing people into my brain when reality has the potential to be so much more fun and interesting.

I also don’t want to spend my fun cosplay outings apologizing for bumping into people, so for the sheer practicality of recognition I probably won’t try costume canes again. And being able to fold my cane makes traveling with other inconveniences like broadswords and longbows a little less frustrating. But I am grateful for both the experience I had, and the way that writing this blog post allowed me to process it. It changed me, even four months after the fact.

If you enjoyed this post then there are a couple more you should look forward to. Next month I’ll be writing more about my experience as a blind fantasy author, and the month after that I’ll be officially announcing the publication of my book. But I also have a guest post planned about disability representation in tabletop roleplaying games. And sometime in the new year I’m going to tackle the topic of long reflective canes for the blind that come in more colors than just white and red.

But for now I’d like to leave you with one final thought. If you could choose to create pleasant, or unpleasant memories, I assume you’d choose the former. So take five minutes today, pick a low-stress experience you’re not looking forward to, and try to imagine every detail of the most positive outcome possible. Like I explained in last week’s post, you can survive disappointment if the best doesn’t happen. But how it changes your anxiety into anticipation, and your perception of the real event, will be worth the time you take now to prepare.

Until next time, I am your favorite blindfluencer reminding you to always look on the dark side.

The Right to Hope

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.