Tag Archives: bad day

The Vision at the Restaurant Table

It was the summer of 2011, and the girl had just had enough. She’d been dealing with inaccessible websites, prejudice from professors, anger, so much anger. Like its own creature, alive in itself, rage, rage against the night
shout and scream, become a child again in the worst, worst way.

The girl’s dad told her to just let go, forget about it. But the girl struggles, thinking: but aren’t we here to change the world, But aren’t we here to end this suffering, but aren’t we here? The girl, so here, so agonizingly here, the anger creature within herself with nowhere to go, pounding the cage of her own ribs, cannot be reasoned with, has been ignored for so long.

She tells herself, be sensible, be calm, be strategic, rise above it, be wise. But stronger in her is The conviction that it might all be nonsense and for nothing: look away, look away…

Later that night, the girl goes out to eat, and walks into the restaurant, sitting down at the table her father reserved, trying to enjoy the music with the bird in it. The dad asks, “hear the bird?” And the girl hears the bird, but the fog she’s in makes everything so far away.

The girl thinks, oh no, I made some terrible, terrible mistake, not good not good, why didn’t I listen, why didn’t I know what I already know? She is haunted by the old specs of memories of a loved one.

And then they were there, the man and woman, the couple from the otherworld. They reached out for her, to hold her in their arms, but why now, why her, didn’t she not deserve this kind of love, she had not stopped to breathe, she had not even been rational. Why, why? The girl can’t even look at them.

No words, “there are no words,” she says, and he says, “Yes don’t you trust us, don’t you? We didn’t let you stay lost.”

She had not been lost all day. In fact, it started out well. This morning she had gone for a walk through the tree lined sidewalks of the neighborhood, she had gathered the star leaves off their branches, watched life holding on: the green mixing in with yellow and orange. A season turning in all that leafy rustling, the hands of time. The music at the restaurant is now making a slow, spiral ribbon up to the ceiling, she watches its shapes, grasping after them, hoping for something to hold onto.

No words, no words, but would you trade your words for freedom? But would language give meaning to experience? But that isn’t why she can see them and looks away, cowers hidden within the shaded corners of herself. Even though they still know her, hold her there with flashlight eyes…

So now the girl is sitting still, wrapped in spiraling music and the fog. And he’s still standing there in front of her, that one so tall, who she has only seen several times, and then before that only in dreams, and she does not know his name…

She starts to feel like part of her is wrapped in the fog, so far away, wants to stay there, wants to stay angry, justified, she has a right to be upset, to act like she does not deserve to see Not him, not her. But there, somewhere else, she is already straining against something large and dark, to get away, get away, and she does not actually move at all, but she turns, like a tree toward the light, and barely able to see him out of some terrified eyes, she takes his hand.

He says, it’s the first time almost that he’s ever said anything, he says, “Don’t you trust me, I got you unlost once, and I can do it again. Just let go, jump I’ll pull you through.”

And the girl is there, dumbly, still for a moment. The why whines around her mind, like a wind coiling around itself, waiting. She is holding her breath, wondering whether there will be a storm. Will the sky fall, will she fall, is she just like the sky? But the girl once survived death, quite literally, and this is something even stranger and more baffling, simple and beautiful. This is living, the wildness of truly living, it calls her to return.

She’s not sure if she’s simply no longer afraid of dying, because she’s not, Or is simply no longer terrified to leap into living. But all this goes by in a flash. She is holding his hand, she jumps.

Then a moment passes. She is in the air, is she just going to fall? Will she come apart or telescope back into herself? She wishes she wasn’t so apprehensive. Suspended between worlds, she wonders whether, if he lets go, she’ll be lost forever. But no, the moment of nothing is so very short; and then everything clears, as close as being able to see that she can remember.

The world appears sharply around her, in high definition. She is sitting next to her dad at a table, the music is so clear, the fog is all gone, the room is lighter, the people walking up and down the aisles,
are so vivid, even though she is supposed to be blind she counts every single one. She can see shadows of people across the room.

The people from the otherworld are gone. She didn’t even have time to thank them, or finally ask who they might be. She is grateful and quiet. She has always lived by, with, because of others. She does not do anything alone.

She spends a great deal of time blinking, blinking, blinking. After that, she goes with her dad out onto the floor and then the two of them are dancing.

And now she sits here in the dark, so late at night, because that’s when no one asks her any questions. And she is wondering if it is just as painful to give birth as it is to be born. Because for quite some time, several years it seems, she’s been at doing both at the same time. Neither ever, ever ends.

And all that love from the otherworld people she doesn’t know, blazing away in the dark is enough to melt all that ice away. It is enough to bring tears to her eyes, and stop her gaze for hours, not sure what to do next. But then, why focus on what could go wrong, If to them you are a flawless child, if to them you are whole, and all this talk of shortcomings just a way to make sure people fear living?

We are more worried about shining then burning out, and have all sorts of solutions and programs for failures, but are so wary of success. It would be heroic to conquer the fear of succeeding. But perhaps good enough for them if you jump anyway.

A Not So Ordinary Day

I have been having some very challenging spiritual experiences lately.  I’ve already been writing about them here.  Dare I suggest, however, that living in this world as  a young woman with a disability who has the wherewithal and presumption to live out loud regardless of her blindness, is actually more challenging.  I had a medical appointment yesterday, which –and I know this is strange– I was looking forward to because it meant getting myself out of the house, into the world, and closer to having dinner with my mom. 

When you are blind, there are only a few options you have for traveling over 25 miles.  First, you can take public transportation.  In my case that would be two hours plus a disorienting stay on a BART platform overlooking a freeway.  Alternatively, there is East Bay Paratransit, which takes you door to door.  I chose what I supposed was the more sensible option and took the disability service.  This was a terrible, terrible mistake. 

 

Now, I have several important values I seek to live by as much as humanly possible.  One is to keep my commitments.  Another is to arrive on time.  A third is to follow through with what I say I’m going to do, be there when I say I will be there, keep appointments, show up when needed or when someone is expecting me to show up.  Yesterday I left Berkeley at 2:30 in the afternoon to get to Walnut Creek by 4:40 PM. Two hours and forty minutes later, after picking up five people one of whom didn’t have his fair, after transferring Paratransit cars, and after the gods only know what else was making us travel like snails traversing Mount Everest, I got to the building where I had my appointment.  I did not say I got to my appointment, because it was fifteen minutes past closing hour when I walked through the door.

 

Like any sensible human being, I was irate.  Unlike most people I suppose, instead of being angry at a company that had failed *it’s* commitments, I felt like a personal failure because, regardless of the reason, *I* had not made my commitment. .  You see, it does not matter to most people in this world why you are late, what your story is, whether you have fewer abilities, more challenges, a crappy childhood, whatever and so forth.  What people care about is that you show up on time, you do your work, you act as normal as possible, you respond to everything cheerfully, and you do what you said you would do come hell or high water.  I felt like I had been given an unpleasant glimpse of hell, and given the choice I would have settled for the high water because California is going through a pretty bad drought. For the shortcomings of missing my appointment, wasting my day, wasting mine and others’ time, coming across as a flaky and unreliable human being, I blamed myself.

 

I am writing this account here for two reasons.  First, perhaps it is time to cease blaming ourselves, if we have disabilities, for things that are strictly other people’s and agencies’ problems.  It is too easy to move on from blaming ourselves for one thing to expanding the blame to all sorts of things whether or not it is rational to do this.  We owe it to ourselves to draw a large distinction between our own principles and values and how we do everything in our control to live by them, and the world’s increasing obliviousness to the concept of taking responsibility, and the values of community and connection, especially surrounding services for people who have atypical needs.  Secondly, I want to publicly fault a service that is based on inefficient protocols, is not run well (perhaps because no one suspects that people with disabilities are noticing?) and fails to consistently provide the support it purports to offer.  In no way do I suspect that I am the only person who has missed something very important because she relied on a service which is ten times less reliable than those services procured for the general nondisabled public.  In my opinion such discrepancy constitutes discrimination and confers approval on the hegemony of normalcy.  We people with disabilities are made second class citizens in part because the most prosperous country in the world cannot muster up the funds, tolerance, and respect, nor take seriously any policy changes that would reflect tangible adequate solutions, needed to give us equal opportunity.

 

What if I had been a quadriplegic who could not take BART as the obvious alternative to relying on the unreliable?  What if, instead of missing a medical appointment, I instead missed my mother’s funeral?  What if I just didn’t get to my best friend’s wedding–sorry. What if I missed the birth of my brother’s baby because Paratransit and it’s affiliates took three hours to go the distance that a car enabled person could travel in 40 minutes?  I am lucky that I was the least disabled of anyone on yesterday’s ill fated Paratransit ride.  I am lucky that I have family and friends, and I am learning the art of self-forgiveness.  Many are not so lucky. 

Perhaps my telling this cautionary tale will bring awareness to the general public of just one of the myriad possibilities preventing those with disabilities from showing up for themselves and others in their own lives, being on time, and ensuring as often as possible that the circumstances of their outer worlds match the strong and respectful soul they are inside.  Next time your friend with a disability is two hours late, or your coworker with a disability once again fails to come to work on time, make sure to remember compassion and realize that more often than not the world they had to travel through to get to you did not allow the light within them to shine through.  Here’s to changing what is, so we can fully become who we’ve always been.