Superpowers Beat Paper

I often write the word "dis/ability" with that slash in there to designate that those of us with disabilities sometime possess abilities that other lack. Call them superpowers. I do.

My friends Beth and Meridian. circa 2001.
FYI: This story is not about either of
them, nor about Beth's piñata, seen here.

Playing piñata is a unique sport. There's a spirit of cooperation—we're all working together to smack that thing, to bust it open so that we can get at the good stuff inside. But there's also a little competition in that some of us will hit it, some won't, and ultimately one person will deliver the final plow that sents bits of paper and candy flying everywhere.

Piñatas possess a special place in my heart. When the blindfold gets wrapped around my face, the broomstick placed in my hands, and I'm spun around to stagger toward that swaying paper mâché target in the air, I feel at home. And I feel super. Over the years I've cultivated an advantage in learning to use my other senses like superpowers to find that piñata in the darkness behind the blindfold. I get my bearings in space, feel the air and objects around me. I listen, I hear. I even smell and taste. And then I swing.

At one person's piñata party, I did this a little too well. I was the first at bat, and also the last. That's right—I took down the piñata so fast that no one else even got to play. In the moment I felt great because the "dis" was diminished by the "ability" and I got to flaunt my superpowers. But in hindsight I'm flooded with remorse, for I ignored Stan Lee's Law of "With great power comes great responsibility," like every good superhero must.

So if you're reading this birthday girl, I owe you a piñata, and several chances for you to swing.

Triple Dissed

Funny how this year, as I've been focusing on my primary dis/ability, I've taken on some others for short stretches of time. Back in May I was walking with a cane for a couple weeks, and in April I lost my voice for a few days. And now I can't hear out of one ear due to an infection brought on by a flu that had me totally immobile for a spell.

Not seeing so well can be a bit disorienting, but hearing every sound come at me from one sound only amplifies that experience. Usually when someone calls my name, I know the general direction the voice is coming from and can wave over that way regardless of whether or not I see who it is. But that's blown for now. 

I'm realizing why a lot of people adapting to shifts in ability prefer to stay home: it's a source of embarrassment, a pain to explain, and very vulnerable territory both physically, socially, and emotionally. Going to the clinic to get my ears examined turned me into a three-ring circus of dis/ability, performed multiple times for receptionists and medical assistants and doctors. I need help filling out the form and repeat what you said please and boy do my joints ache right now. 

I've learned not to apologize for any of this stuff: I never say "sorry" for not being able to see because that's not my fault. Some of the people who work at these places are learning not to apologize either, and that's good because my dis/abilities are not their fault either. An apology is an empty substitute for help and as a person with a dis/ability (or two, or three, depending on the day) I'll take a singular act of help over a hundred apologies.

Good news is: flu is gone, no more body aches, but I still can only hear out of half of my ears. And of course I can half-see out of both of my eyes.

Stay tuned!

Double Dissed...Again

Today, I fell off the stage. Twice. I can't really walk right now.

This happened because I was working blindfolded and tried setting things in ne places. Doing that threw off my spatial awareness.

Good news: My leg doesn't feel broken, just sprained. And I'm enjoying the irony of giving myself a disability while making a show about having a disability. 

Ears ≈ Eyes

I have a friend who's losing his hearing. He just visited me for a couple of days. Yesterday we were having lunch and talking when he kept turning his head and bending his opposite ear in order to hear me, so I said, "Do you want to switch places so that I'm facing your better ear?" We switched and then talked about it, and I told him stories about the visual equivalent where I sit at a lunch table facing someone and if the light is behind them I'll figure out some way for us to switch places. If they know me, I'll ask them, but if it's someone I do't know so well, I may have to do what amounts to turning my head and bending an ear.

So many of his stories about passing as a hearing person reflected my own in passing as sighted. We both have difficulty understanding everything that transpires in meetings. We are both sometimes interpreted as being aloof, distant, or just straight up assholes who don't acknowledge others, but really we just didn't see or hear something or someone. Sure, he could be brandishing an ear trumpet, and me sunglasses and cane, but there's a whole other set of baggage that comes attached to that, a passing as fully disabled and then being disregarded for a whole other set of reasons.

There ought to be a blog, and a theatre piece, about such stuff.

Bowling Blind

Last year I inherited my grandfather's shoes. But it was my grandmother who gave me her eyes and the cone dystrophy that's at the center of this blog.

Grandpa Dan had been a league bowler in Illinois. He'd once bowled a perfect game. But I have never and will never bowl a perfect game, because I grew up in Boston. And that means I grew up with candlepin bowling. 

I could wax nostalgic on this great New England pastime, but this is a blog about vision loss. I'll let this vintage article about candlepin bowling explain the game to all you barnies out there. And here's a photo of the candlepin lanes I once called home in Davis Square:

I started bowling when I was six, and even then I had trouble seeing the tall, skinny candlepins. Had I ventured up the lane, I would have understood their triangular layout, but from far away they looked like a set of clenched teeth waiting to be knocked out. And knock them out I did, like some maniac dentist who hurls 2-pound marbles into his patients' open mouths until someone tells him that the game is over. When it came time to tally the score, I usually thought my 6 was a 7, not because I was a cheater or a spoilsport, but because the ninepin was hidden behind the three and I just couldn't see.

On a trip to Boston last week, I went candlepinning with my mom. I know she reads this blog, and probably wasn't thinking of how much my vision has waned when she told me that I could do better every time I missed my pins altogether. I thought of my Grandpa Dan, the tenpin (a.k.a. "big ball") league bowler whose shoes I'd inherited, and how he'd also lost his vision, only it was suddenly when age-related macular degeneration set in. And I thought of how even into his 90s, even with a white cane and dark glasses, Grandpa Dan continued to bowl. 

So I, now, standing in my grandfather's shoes, wearing my grandmother's cone dystrophic eyes, breathe with ball in hand, tapping into all my senses. Legs run forward, arm swings back, and I bowl. I bowl a strike, and then blow it in the next frame with a gutter ball. I score a 7, but the now automated scoring system tells me it's actually a 6. No one to argue with, just balls to bowl, pins to fell, shoes to wear, and eyes that see differently with the passing of each frame.

Double Dissed

I just spent a few days with laryngitis. At its worst, I couldn't speak at all, and so I went out with a stack of index cards and a Sharpie in my pocket. Whenever someone said "hi" to me, I held up the first card, which read, "I have laryngitis." If they wanted to converse more, I could write notes on the index cards.

It was interesting navigating the world with two disabilities, one chronic that I keep less visible (having low vision) and one temporary that I chose to make visible (not being able to speak). And once we broke the ice, laryngitis had its perks. People found communicating with me to be interesting and entertaining, and I played this up, making it into something of a performance. In the park, someone offered to buy me sorbet, and then the guy selling it refused to take any money for it. When "talking" to my friend who works with visually impaired people, I wrote on a card, "We're all temporarily abled," and then she told me that this laryngitis might be more of an ability than a disability for me because I could take my time to say what I wanted to say, draw pictures, and then have a record of that correspondence.

On the way home from my night out as a laryngite, I gave out some of these cards to people, odd anthropoetic documents of my conversations with others. When the trolley reached my stop, I rang the bell, but the driver shut the doors before I could get off. I called out, "Rear door!" but he couldn't hear me because at the end of the day, I had no voice.

What I See in the Dark

Today we went with our retinal photographer to take turns floating in a sensory isolation tank.

I've been looking forward to this for years and am so psyched to have made friends with some folks who have one in their house. When it was my turn, I showered and then opened the closet door in the bathroom that reveals the hatch to the tank, looking like a cross between the Apollo Space Capsule they had the science museum when I was a kid and the doorway to Narnia. Inside is like a roomy, waterlogged coffin: tall enough to sit up in and long/wide enough to lie down in without touching any sides. The air and water are heated to body temp with enough salinity to support a supine person.

As I shut the hatch, lay down and turned out the light, my first concern was not touching sides. Then I realized I was holding my head up, so I let it go, further and further back, much further than I thought I could go until my trapezius could really relax. As I began to lose sensory perception of the difference between the air above and saltwater below, internal sensations crept in: the rhythm of breath and heartbeat, an itch on my face, my belly, in my ear, and most prominently, all the light I see all the time in my eyes.

The tank is totally dark, so dark it doesn't matter if eyes are open or closed. But for me it looks like the Milky Way: a haze of shimmering stars everywhere I look. It's so bright that at first I wondered if I'd left the light on, but those lights are always there, even in the background when my eyes are open. This is my biggest impediment to seeing, even more than myopia or astigmatism.

This first float was a project of noticing: What do I see when there's nothing to see? A future float might be the project of seeing no stars, only dark.