Expo Pens

21 Apr

Mary's bathroom mirror

I reached for the faucet, looked up, and saw red lines covering the reflection of my face in the mirror. Maybe I should be concerned that my first thought was that I was obviously bleeding severely from my face, but maybe blood means more to the heart than red Expo pen on glass and what art isn’t painted with blood anyways? I’m glad my instincts are still in tact.

I wonder if we began to write more once we invented washable markers. I wonder if we became more eager to create once we had pencils with erasers. Without the threat of permanence, I wonder if we began to take advantage of our freedom to express ourselves without the fear of contributing to cultural posterity. It seems more likely, however, that we did nothing but provoke our perfectionist tendencies. There’s too much pressure that comes with creating art that can be erased. We feel the need to wipe away mistakes until perfection is achieved instead of simply accepting the work produced on the first try. When using a permanent marker, letters are different sizes, circles don’t come out round, but humans aren’t perfect. Even God didn’t get creation right on the first try and, unlike sinners, even a flood won’t wash away a Sharpie’s mistakes. With such permanence comes a sense of relief. A Sharpie shouts, “You better love me as I am!” while an Expo pen yawns and tells you to do better.

The problem with our reliance upon erasers is that our lives are not like the whiteboards we hang above our beds, in our kitchens, reminding us of appointments and needed groceries. Society imposes a great deal of pressure on us to not only be the best we can be today, but the best we could have been yesterday. It’s as though we’ve been building the cities of our histories with cement when we had thought it to be sand. Our need to rewrite the past leaves us spending more time scrubbing at our mistakes than laying bubble wrap for the future. We find that our efforts are in vain, attempts to erase past situations proving as successful as removing stains with spit. What’s done is done and our actions claim more than ourselves. We are not only writing our lives in Sharpie, but with a pen whose permanence influences the ink of those around us. When we go back to change the lines, we see that someone else has already finished the picture. Even with Expo pens in our hands and infinite amounts of time, we probably would never get a perfect circle, but when we all draw together, we can get pretty close.

Looking at Mary’s mirror, I wished the message of love had been written in Sharpie so that we couldn’t erase it and forget. Of course, I was naïve to assume that the words don’t reach beyond the bathroom into the past, present, and future. Those words are made permanent every time hellos are said in the mornings, tables are set for celebrations, smiles are shared over jokes. Those words are engrained into a life and every life that encounters that life and other lives in turn. They are made eternal by scars that are never formed, by wounds made unnecessary, by goodness. They become our daily chants as we redefine disability. They live on forever in every hug that reassures us that we were all penned perfectly the first time.

Decorating my room!



15 Apr

Last night I realized that not only can I hear the Disneyland fireworks from my room, I can see them too. If I stand on top of my night stand, push my head against the wall, and look through the glare of the window, I get a pretty nice view. Luckily, I’ve seen it before from the bowels of that magical place, but I don’t exactly remember how the story goes. Some evil queen tries to take the magic from the park, pirates blow cannons over the castle, the audience is reminded that dreams really do come true. The castle turns colors, music is set in time with the explosions, Tinkerbell appears at all the right moments.

Watching a Disneyland fireworks show from your window is the urban version of stargazing and seeing a plane fly by. You can’t help but wonder who is on the plane, why a handful of seemingly random people all need to go to the same place, from the same place, at the same time. There’s a story there. Maybe it doesn’t involve evil queens and fairy dust, but it’s a story nonetheless. Even if it is only a story about peanuts and Sky Mall, to some it is the most fantastic story ever told. Leaving home, returning home, family reuniting, new jobs, new houses, vacations, adventures, questions. How much human potential and anticipation can fit in such a little box?

The same can be asked of Disneyland. Lines are long and restaurants are crowded, but that congestion is created by people. People don’t simply surround us with stuff, with the insides of vacuums, but remnants of stories and reminders of life. When humans mark their territories, nothing is insignificant. A candy wrapper left on Main Street belongs to someone who chose that specific item because of a third aunt’s cousin’s grandfather’s preference for it. A line for a roller coaster is the temporary home of a kid that wore his Superman shirt for a reason. Your blue Prius is parked in the Daffy Duck section of the parking lot next to a Suburban that was born in Massachusetts, lost a mirror with a teenager in Nebraska, chipped its paint with road trippers in Central America, blew a headlight with a mom in Tennessee, and is now owned by two grandparents from Beverly Hills that can’t believe that Disneyland is open that late. Find the story there.

They always say to be nice to others because you don’t know what stories they are telling in their footsteps. I say to be nice to people regardless, but know that the holes in their sweatshirts and the scars on their knees are not a result of accident. We would never be bored if we started to trace the threads of our blankets or wonder why there are scuffs on the floor. Collect all of the stories held inside passing planes and you will never need works of fiction. Real life is exciting enough.


10 Apr

I went for a run the other day and ended up running 17 miles. I wasn’t necessarily intending to run that far, but once I found dirt paths and trees, distance didn’t seem to matter. I hadn’t realized that I needed a break from the malls and freeways, to escape and remember that I can get pretty far with just my two legs. Society often subscribes to the work hard play hard mentality, implying that our time off should be as effective and well-crafted as our time of productivity. There are moments set aside to relax, but you better relax to the best of your relaxing abilities and waste no time with pillows of the wrong softness and music of the inappropriate genre. Escaping society’s burdens is like solving a puzzle made from the wood of your bones or going on a treasure hunt where the prize is your own right shoe.

Escaping only becomes more difficult when you have a disability, exit doors lacking bright red signs to signal proper paths. There are struggles to brushing teeth, to washing dishes, to putting on socks. Simply waking up is a reminder that a life with disabilities doesn’t come with vacation days. It’s not like leaving work for a Caribbean cruise, preparing pineapple drinks with small umbrellas to celebrate a hiatus from days of drinking water and being healthy. As soon as you begin to forget that life is challenging, and get lost in the story of Harry Potter, you stand up to get some crackers and remember that your legs are two different lengths. There are no sick days, no holiday breaks, no mornings in which you can hide under the covers. Sometimes the house members complain about taking their meds or waiting for the bus and I wish I could tell them that tomorrow could be an exception to the routine. I wish that for just a day I could give them complete independence, complete capability.

Upon second thought, this can’t be awarded to anyone. Disability or not, none of us can escape from our individual obstacles. We are always already living in our thoughts and influenced by our personalities and traits. Even when we are away from our household chores and 9 to 5 jobs, our hands still sweat when we look over the edges of tall buildings, we still jump at the sounds of slamming doors and compliments. The most enthralling of movies won’t take away our less than perfect visions, won’t erase our biases and opinions. We are stamped by the thumbprints of our cultures, upbringings, and genetics, unable to interact with the world with anything other than our uniquenesses.

It is a popular belief in L’Arche that all people are disabled, with some of humanity better able to hide it. Maybe it’s also true that we are better able to escape it, to ignore morning meds every once and a while, to not have to wait for a bus when we want to leave the house and just drive our cars until the road ends. Unlike those we call disabled, we can go on Caribbean cruises and forget that breathing is incredible and not always so easy to do. We can run for 17 miles and forget that two legs shouldn’t go that far.


7 Apr

The priest asked us a question. It was a rhetorical question, but when he asked us to tell him the traditional Catholic Holy Thursday ritual, Stephanie raised her hand and said, “It’s the washing of the feet!” Yes, the great washing of the feet. It’s the ritual that never fails to showcase how much we would rather be watching the service from our couches than the pews. Let God take a year of my life before anyone comes close to these bunions. Strike me down with your strongest bolt of lightening if these toenails are touched by anything other than my lavender luffa and these two rightful hands attached to the same body.

Forget that feet are a reflection of what we’ve been through, telling stories of what we’ve made them endure and how far we’ve made them travel. Forget that feet are the only part of us that can most accurately predict the future, ignoring the doubts and assumptions of our minds and leading us to places we thought we understood. Forget that feet are the greatest mascots of simplicity, reminders that moving forward is instinctual. Forget that feet are beautiful and look fantastic in a nice pair of cowboy boots.

Instead, remember that we probably invented rhetorical questions because we are afraid of answers. Thoughts don’t leave the brain fully formed, emotions don’t leave the body with stickers of approval, and even the most detailed of maps can’t tell us where we are walking. Remember that our feet are about as far from our brain as possible, evolution telling us that our thoughts only pretend to pave the roads we walk. Remember to trust.

There’s something to be said for autopilot, for a dog’s ability to find its way home, for those moments when all you want to do is sit under a tree and there just happens to be a park nearby. To offer your feet is to sacrifice control, to realize that you never had it in the first place. It is to begin to answer rhetorical questions and abandon hope of ever saying anything coherent while doing so. It is to be excited on Holy Thursday mass when the priest comes by with a pitcher of water and asks you to take off your shoes.


3 Apr

Swearing is becoming quite popular in our house. While this is nothing new for Sarah and Stephanie, it’s surprising now that Mary’s favorite expletive is no longer “Oh brother!” I do miss her old phrase, but there is something satisfying about tucking her into bed, her neck cracking as she lies down, and having her tell it like it is. When the world has handed her such a burden in life, a bit of profanity only seems appropriate. Of course, once settled into bed, she’ll talk of those who are suffering worse than she. Is that enough guilt for you, world?

Although we lose clean water and social approval, it can be gratifying when a filter goes out. Despite an ability to wakeup with the impression that each day is a new opportunity, a new beginning, there is something to be said for the weeks, months, and years that are slowly piling behind the filters of our histories. We try to ignore the backup, try to remain pleasant despite conflicting orders from our emotions and impending breakdown. This is why we go to movies and watch reality shows, waiting for someone else’s filter to break so ours don’t have to. Aristotle defined it as catharsis, an opportunity to reflect on the characters’ emotional breakdowns on stage so that we won’t have to go home and have them ourselves.

In this house, however, we are the ones putting on the show. Now, I am not asking for a game of dodge ball with the dinner glasses, but it’s possible that a little swearing is just what this house needed.  It is a reminder that maybe we should look underneath a fountain from time to time, take note of all the dirt it has collected over the years in order to spurt out clear water on the other side. Maybe Connor’s tantrums and Mary’s expletives are a bit of spring cleaning. Maybe I can chuckle every time Sarah passes my door with a string of expletives in toe. But then again, at five in the morning, maybe not.

Wrong Turns

31 Mar

One of our wrong turns led to an afternoon in this used book shop

I turned the wrong way driving Terry to Target. What with the stoplights and crosswalks, the mistake cost us another ten minutes of our afternoon. I wasn’t complaining. It is rare to have time with others, time in which there is nothing else to do but just be and exist. No lunches to make, no bathrooms to clean, and no tables to prepare for dinner. Terry and I listened to the radio and talked about what it must be like on the other side of the world. We watched people cross the street and talked about how lucky we were to have food and houses and Easter egg hunts. In a different world, I can see Ford inventing the car simply out of a need for time, telling his wife to put down her knitting for God’s sake and spend an afternoon enjoying the scenery.

When you have a disability, life begins with what society would call a wrong turn. A great deal of time is spent trying to get back to Normal Street, therapies and surgeries and medicines trying to make it right.  Forgotten are the parks, restaurants, and opportunities you pass on this new road, a road you didn’t realize you’ve been on since the first clicks of the seatbelts. It is how we go on walks, assuming we are lost, until Cathy exclaims in mock surprise that we just happen to wind up at IHOP.

Maybe the map of life for people with disabilities has a few detours, a significant number of closed roundabouts, but I am learning to make sure I don’t already know where I are going before I stop to ask for directions. We are a dysfunctional family, at times being led by a soccer mom that only realizes upon reaching the game that none of the kids play soccer. We are wearing high heels instead of cleats, the grass is muddy, but there’s no doubt there’s a good coffee shop down the street. More often than not, hot chocolate was what we were looking for in the first place. It’s true that sometimes the GPS will take the scenic route without permission and sometimes a disability will be a reminder that turn signals are only suggestions. I guess no one ever found the ocean by driving straight. Terry and I made it to Target eventually, but who cares about Target anyway?


27 Mar

The moon was huge the other night. It was one of those moons that is scary in its beauty, its awesomeness a sure sign that it had fallen off its normal path in space and was headed straight towards Earth. Matt and I sat at the dinner table, silent and staring, me being sure that within the hour the moon would take down the mountains and palm trees and crash into the big picture window in front of us. None of the other core members or assistants seemed to be aware of the risk we were facing. They weren’t lucky enough to have the seats with the view.

As we ate our soup and salad, it seemed absurd to me that the moon could be seen by anyone else on the planet. The perfection of its positioning in front of our window made me sure that the moon was putting on a show just for us, a private screening in honor of something good we must have done that day. It was similar to the way you can stumble upon waterfalls in rivers and clearings in forests and feel pride in believing you were the first to have discovered nature. Although you know this couldn’t possibly be true, you feel all the more happy in knowing that others have shared in this secret of the Earth as well. I wonder if anyone else stumbled upon the moon that night, eating dinner, looking out the window, claiming individuality in the shared experience.

There is something unifying about the moon. Besides the sun, it is the only thing we can be sure reaches every person’s view every single day. No matter the differences we find around the world in politics, attitudes, sentiments, or values, the moon offers itself as a common landscape. It defies borders and oceans, unconcerned about the wars and hostility and lines we draw across our bedroom floors and hearts. It ignores time zones and schedules, my mom assuring me during stays away from home that, no matter the distance between us, we would always be looking at the same moon. And as long as the next harvest moon doesn’t succeed in making its way into my dining room, this is a permanent point of connection for humanity.

This is not to say that we all see the same moon in the same way. I was looking at the moon through a window, a very different window from the window I looked at it through only a week previous. Now in Orange County, I look through a window placed between walls and trees and grass and wood floors that make up a home with a history I don’t know yet but will soon become a part of. How many times has this window seen Stephanie gardening in the front yard, Sarah not understanding why Stephanie can’t hear her yelling through the glass? Mary looking at housing prices and watching for the bus? Bowls of cereal with the sunrise?

Stained with the struggles, questions, dreams, and hopes of those that have looked through it for countless years, this window serves as a lens to the universal landscape with a filter of individual history. Our window has seen questions of difference, inequality, disability, and love. Maybe the house down the street looks at the moon through a window that has seen scenes regarding wealth, happiness, and what it means to be successful. Maybe on the other side of the planet, a family looks at the moon through a window without glass, carved out of clay. Maybe that window has been witness to the struggles of poverty, of identity, of the battles between culture and the need to survive. Probably too close to home, someone is looking at the moon through a window that only exists in the imagination. This window has held the struggles that come with wondering about the next meal and the night’s weather forecast. Every window shows us the moon–the same moon–yet every window has a vastly different story.

As I sat at the dinner table that night, I felt lucky to be looking at the moon. More importantly though, I felt lucky to be looking at it through that window, now becoming a part of its unique history, a witness to its responsibility as a lens to life’s greater connectedness. Needless to say, I’ll be keeping my spot at the dinner table.

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