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Monday
Aug252014

Ice Bucket Challenged

I watched the videos fly by in my timeline, people dumping buckets of all sizes on their heads, everyone with the same O face afterwards. The fails and the flops. The lady on a horse, the entire Reds outfield. 

And then, weeks after it began, when everyone was starting to become fatigued and the backlash was in full swing, I was challenged by my brother. He said that I could lip-sync to "Ice Ice Baby" if I wanted to, and lord knows I know all the words, but it didn't seem like enough. As I watched the water fly around Facebook, I realized that even though I'd seen a hundred videos, I had no idea what ALS really did to a person. My awareness of the challenge was raised more than my awareness of the disease.

In response to my brother's challenge, I thought of doing an "Ice Cream Bucket challenge," eating an entire pint of Graeter's ice cream. I thought of dunking my cats into an ice bucket. The internet would have loved that. Videos aren't really my forte, though, so I thought I might write about ice buckets. About the shock of O face you see when someone tells you they have a disease. The feeling of loss at an announcement of death. 

But I do enough of that.

None of it seemed quite right to me. None of it told me the story of ALS, a story I'm only distantly familiar with, once watching a friend's grandmother waste away with it in one of the darkened back rooms of her house. I had no other knowledge of the disease other than that memory of a silent old woman lying so still there in her bed. And so I decided to do a little research instead. 

At first I tried to find videos showing affected people on YouTube, but when you search "ALS" there, all you see are videos of ice bucket fails and Bill Gates' contraption. So I did some grown-up research by actually reading a few things. It didn't take that much longer to find information on ALS than it does to dump a bucket of water on your head. Here are some facts about ALS I found on the internet, including on the ALSA's website:

  • ALS stands for "amyotrophic lateral sclerosis." Lou Gehrig had it, and his retirement from baseball is when it started to receive greater attention from the public, which is why it's often called Lou Gehrig's Disease. Here's his farewell speech, with the help of some other ballplayers. 
  • The early symptoms of ALS are muscle weakness or stiffness. "Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows."
  • There is no test for ALS, nor is there a known cure.
  • The life expectancy for people diagnosed with ALS is variable. While many people live no more than two or three years after diagnosis, "about twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years."
  • A small number of ALS cases are attributed to a hereditary gene, though most cases (90-95%) are not. Anyone can get ALS, though it is not contagious.

Still not satisfied? Sorry for not posting a video of me getting wet, but here is a much more important video to watch of a man who has just been diagnosed with ALS taking care of his mother, who also has ALS, so that you can actually see what it does to a person. In it, he talks about why this viral awareness is important to those with ALS: since the number of people with ALS is so small, drug companies don't want to invest in finding a cure. It's not a popular enough disease to warrant treatment. That made me incredibly sad. 

I'm making donations to both the ALSA as well as the Michael J. Fox Foundation for Parkinson's Research, because I want to make sure that other organizations and causes I care about don't lose out, and I'm challenging all of you to educate yourselves a little bit about a disease that may not have affected you personally, but seems to be on the tips of everyone's tongues lately, or at the bottom of an ice bucket.

Wherever you find it, that's my challenge to you. 

Thursday
Jul242014

In The Picture

The brown sign says "Malabar Farm 9" and on a whim, I pull my car off to the right. I've got time.

This isn't my first trip to Malabar. Years ago, we took a tour there, marvelled at the author's books on the bookshelf, listened to stories of his wife's interior design. We admired wallpaper and bedspreads and looked at ourselves in the ornate mirrors of the Big House. But today my visit is fleeting; I simply stopped to smell the cow poo. 

It's still early; the gardener is weeding the patches of mulch around the flower bushes, just down the steps from where Bacall and Bogey posed for their wedding pictures.

There's a carving of Ganesha over the doorway. I notice that birds have built a nest behind it. Behind me, the green hills of Richland County roll out in waves, the sound of a distant mower revs up from behind a line of trees. The sky is a bright and intense blue, spotted with cotton ball clouds: unreal, like a child's Sunday school project. A rooster crows, a sheep baas. I peer over the fence at the animals in their pens. What a good life they have here in these hills.

"Do you want me to take your picture in front of the cows or something?" says an approaching farmer, lifting his John Deere hat off his brow, smiling his tanned cheeks at me and placing his arms akimbo.

"No thanks, I'm just here to take pictures of the house."

"You don't want yourself in the picture, huh."

But, dear farmer, I want to say, I am in the picture. I'm here in this picture as much as that famous Hollywood wedding is still here, as much as Bromfield atop his tractor. My face is in these hills, this sky. This farm is why my grandparents met. This is where my dad would ride his motorcycle, this is where his sisters would go blueberry picking. My grandparents, buried up the hill and around the bend, are now part of this earth, part of every blade of grass. My story is in these hills, in the dust we're stirring here now, exchanging words next to braying donkeys and clucking chicks.

I wanted to tell him: I am in the picture. I always will be.

Later, on the phone with Dad, I tell him where I stopped today, and say how lucky I think he was to grow up in one of the most beautiful places in the world. On the other end of the phone line, there's a brief, whistful silence, and I think how he'll always be right there in that picture too.

(I first wrote about my attachment to Malabar Farm and Louis Bromfield back in 2006.)

Friday
Jun202014

Everything There Is

The fireflies low on the fields of freshly planted corn and soy
Taking your breath away so sharply you think that might be the moment you leave the earth
It's a joy and a fear of dying so strong that it's almost as if the joy will cause your death
The moment when you realize that you can't record what you're looking at
The fear of not being able to put those moments down in words, or in photographs, or in paint
Because that is our immortality
And so instantly you face your mortality with the beauty and the joy
And everything there is
Terrified that you won't get those words down before you go
To the point where you rely on the voice recorder on your cell phone
To do the work for you as you race along the highway
So you remember those fireflies, that corn, that soy
The mist hanging low over the hills after the rain of the storm
The lightning flashing through the clouds in pinks and orange
The light of the sign: Ted Nugent is playing soon at the Indian Creek Tavern
Cars pull up, you wish you could go, but you know you're female, you know you're scared
But that light: the lighted arrows pointing the way
And yet you drive, and get lost, and drive by a cemetery
And hold your breath because you know that you're so vulnerable
That that could be the moment that it takes you
That you leave, that you're gone
The fireflies, the corn, the mist, the soy, the lights

Sunday
Mar022014

How I Learned To Love The Mall

I get a text: "I am at a mall."

It's Jim. He's at a mall. This is not the first time I've received such a text. People tend to think of me when they visit malls.

"Still awaiting the illuminating essay how I learned to stop hating and love the mall."

Earlier that day I'd gone to the mall to see a baby kangaroo. I follow this mall on Twitter; they follow me back. We have a mutual love. It's no secret.

"Because this makes me want to build a doomsday shelter."

I know: I have a fetish. I have a strange and insatiable fetish for malls. For the skylights and fake trees, the slick reflective tiles, escalators carrying teens to the food court. Nail salons. Generic clothing stores. Kiosks. The fountain.

A fetish for something that everyone else hates. A fetish for ugly. I can try to help you love the mall. But it might just be a predilection.

* * *

I have very distinct rules for enjoying the mall.

#1 GO ALONE
I never, ever go to the mall with other people. I can't even imagine going to the mall with other people. (Jim, as a male on your own, this might not work for you, especially if you bring your camera. I acknowledge that this part of it makes it a huge benefit to be a white female, although I still think I get weird looks sometimes.) This allows me to experience it at my own pace; five minutes if that's all I need, or fifty if the mood strikes. The Zen of the Mall is being alone with your thoughts; not speaking, just listening. Mall acoustics are fantastic in that they both magnify and mute: the hubbub of commotion reduced to a hush of distinct words. It allows you to both be very much in the moment, and also alone and separate from other people's experiences should you wish to be.

#2 DO NOT GO THERE JUST TO SHOP
Of course, it's important to support the businesses in malls or there would be no malls. Many of the stores in malls today are small businesses: locally-owned, specialized; I feel completely comfortable spending money to support the local artists in the airbrush store, or the family-owned baseball cap store where the bags are generic and the grandson helps at the cash register during the holiday season. (I also spend money in locally owned businesses downtown and in my own neighborhood.)

Whenever I feel obligated to go to a mall to shop, though, I can feel the same pressures that make other people hate the experience. I don't like feeling obligated to move faster through the crowds, I don't like that there has to be a destination. There is no enjoyment when you have a distinct purpose: there is no stopping to enjoy the way the light through the skylight hits the walls, the way the fake leaves on the fake trees are flapping in the fake breeze.

#3 APPRECIATE THE FOLIAGE
I know the plants are probably fake; I love them anyway. They're well-placed and well-chosen, symmetrical; a form of interior landscaping artwork. I love their futuristic plasticity; I love that maybe someday when we're no longer here, they could still be. 

#4 BRING A CAMERA
It's very likely that one day I will be approached by mall security for the number of photos I take in malls. For the fact that I go to the mall almost exclusively to take photographs. (In fact, I have been approached by them once, when I'd very obviously arrived at the nearly empty mall to take pictures with my larger camera. Since then, I've stuck to cell phone photographs and point-and-shoot cameras.) Of course, I try to avoid taking pictures of children, and anyone else who very obviously doesn't want to be photographed. While it's too late to create something like this, I also think that mall society presents a very interesting cross-section of humans, and documenting it makes sense to me. More than anything, it's the light I love. Mall architecture is designed for photography: the skylights filter the light perfectly, creating a beautiful assortment of postive and negative space and well-lit landscapes. There are focal pieces, textures, and a calming emptiness. There is ample room to move around and find different angles, find the way the light hits the geometry of the cathedral ceilings best. The mall is, to me, a playground of light and portrait subjects and sculpture, the largest photographic studio you can imagine.

#5 SIT DOWN
After visiting the mall kangaroo, I was headed back to the car when I saw an older lady sitting cozily on a bench near the Macy's entrance, just watching the people go by. She had a smile I recognized from older ladies on park benches; the joy of experiencing humanity as an observer, watching life happen, watching the people go about their business, feeling their experience in a way that is easy. When it's too cold for park benches, mall benches make wonderful substitutions. I can't wait until I'm the age where it's acceptable to stare at passersby with that look in your eye: I'm enjoying watching life through you. I'm enjoying imagining your stories, where you might head next, what brought you here in the first place. 

I wanted to take this woman's picture, but when I thought about it, I realized that it was enough to take her story and her lesson. Sit down. Watch life go by.

But these are just my rules. 

* * *

When I moved back to Ohio three years ago, the first thing I noticed was how suddenly accepting I was of everything that once stood for conformity. Sports. Cars. Malls. These were the things that, when I lived here in the 90s, drove me to dress all in black, and yet to decry the proliferation of Doc Martens worn by those who didn't even listen to punk music; to make blanket statements like "I hate jocks" or "look at all those assholes with cellphones." 

But when I moved back here, I started to understand something important that I couldn't grasp before: There's a unique and delectable challenge to finding self within sameness. It narrows the scope of vision and focuses it on smaller but more important differences you might not have noticed before: it helps you to realize that, truthfully, there is no sameness. That's a myth constructed for us, a myth we don't have to buy into even when we're participating in the very thing they are selling.

Of course, there's also a huge element of nostalgia embedded in these "conformist" fetishes. Not the nostalgia for something familiar but just the opposite: the nostalgia of an alternate reality. When I go to a ballgame, I'm imaging what it might have been like to grow up as a jock, a girl who embraced the sports side of her tomboyishness (instead of the side that cut her hair off and played bass in bands). When I visit the mall, I'm visiting someone else's teenage years, someone who spent hours with friends swinging their feet under a table and gabbing over a shared tray of french fries, someone who flipped through records at Sam Goody's (not just on the occasion you were there with your grandma and convinced her to buy you the new Sir-Mix-A-Lot cassette in spite of the explicit content sticker). Someone who wears lots of Ed Hardy.

Because more than lists of rules and appreciation of the way the skylight forms the sun onto its walls, my love of malls is about other people's stories. I visit to absorb them, to reimagine them, to collect them. What the mall teens wandering in packs talking about. What the woman at the MAC counter with a saddlebag of makeup brushes does when she clocks out from showing people the best way to apply eyeshadow. I go to the mall because I want to be that old lady on the bench, absorbing life as it goes by. There are a million places I could do this, but the light, the plants, the shiny floor tiles, the people: it's a little slice of perfection for me. It's easy. It's society under one roof. It's social commentary. It's both futuristic and nostalgic. It's heaven.

 

(There is a much longer essay to be written — one that would require a lot more research that I have time to give right now — about where I think malls should be headed: more social and community engagement, less commercially-focused. I also want to acknowledge that malls are currently horribly unenvironmental, both ecologically and socially. This doesn't mean that they always have to be: I'm a believer in progressive approaches to improving the impact these already-built structures have on our lives and our environment.)

© Zan McQuade. All rights reserved.

Friday
Jan242014

The Knock on the Door

For the second time since we've lived here, someone knocked on our door today, having run out of gas on our drive. It was two young girls in thin coats, freckled, one wearing more eyeliner than the other, both of them faintly red-headed, and I said I would drive them to the gas station. When we got up to their truck, there were two boys inside, bundled up, looking the other way. The face of the boy in the back was obscured by the fog of his breath on the window pane. I thought I saw a patchy beard, but couldn't be certain. They wore work coats, their heads pulled back in the hoods like turtles retreated into shells. The boy in the passenger seat stared the other way, east, toward our mailbox, to where the day lillies would grow in summer. 

The truck was at an angle on the drive. We decided that I could get around the truck; the boys didn't want to get out of the truck to push it anyway. The girls grabbed their big bright pink wallets, and I drove them to the gas station. 

"Are you sure those guys are going to be okay?" I asked them. "If you want I can call my husband and ask him to have them come inside..."

"No, they'll be okay, they're bundled up."

I said this honestly because I was afraid that the boys with faces obscured by breath fog and hoods were going to rob the house while we were out getting gas. I wanted them to know it wasn't empty. I tried to say it casually, off-handed. I didn't want them to know I was mistrusting of anyone.

We got back with the gas. The boys were still in the truck. The house was fine. This is not that story. Or any story really, just what happened after I heard a knock on the door.

The girls were going to culinary school. One of the boys lived here, the other didn't. They were all from the same small town. "Up towards Dayton?" They spoke like young girls do, everything a question. Everything a wonder.

"I grew up in a small town, too." 

"Yeah, just cornfields." Said with the spite of someone who only recently left a small town for the big city. "It's my first time living in the city."

"How do you like the city?"

"It's fine. The traffic is too much sometimes?"

We talked about cars. It was her dad's truck, the girl with more eyeliner; the gas gauge was broken. I told them I'd bought my car from my mother. The marginally intimate conversation of newly acquainted strangers stuck in the same car. I asked how old they were. "19?" Oh, running out of gas at nineteen, with boys in your truck and a culinary career in your future. 

Suddenly I felt weird for asking. "I didn't really need to know how old you were. I guess I'm just making conversation."

They were going to become bakers. Pastries and stuff. They didn't have AAA. "We called the police and they said they couldn't help us either." I said it was a colder winter than I could remember in a long time. "What a day to run out of gas."

The emo looking woman in the gas station booth had to run their payment twice; the girl with less eyeliner stood holding the red plastic canister, hands shoved into her sleeves. I had to wait for a woman buying Marlboro Lights with a credit card to finish her transaction before we could figure out why the gas wouldn't pump.

We rode back to the house, the interior of the car smelling faintly of gasoline. The sound of it sloshing against the red plastic at her feet. 

I had some 80s Todd Rundgren playing when they knocked on the door. Blue-eyed soul ballads with saxophone. I introduced them to myself, and then to the cat. I was wearing pajama bottoms and a big sweater, my hair was uncombed, gray bits sticking up more than the rest. I put on a proper coat to go outside. I can barely remember nineteen, thin coats, work that starts at noon.

The girl with less eyeliner sat in the backseat. "Do you not know many people here either?"

"No, we do, but since my husband and I both work from home, we..."

"Don't get out much?"

"Yes, I guess you could say that. During weekdays at least." I thought of the roaring fire we had last night. I thought of how we pretended to be Jacques and Julia while cooking spaghetti. How I like to sit with my toes shoved under his legs on the couch.

Our car choked as it started. Their truck was nearly blocking us in; a service truck had to stop traffic so that I could reverse into the oncoming lane.

The boy in the passenger seat, looking the other way out the window. Refusing to get out and push the car. 

"They're not chivalrous kinds of guys."

The girl with more eyeliner pulled a five and two ones from her big bright pink wallet and tried to hand it to me. I backed away on the ice. I told them I'd do it for the karma, not to worry. I told them to be careful backing out. My voice sounded genuinely concerned.

They were going to be late to work. They didn't know many people here yet. They liked our house. 

I can barely remember nineteen.

© Zan McQuade. All rights reserved.