Epiphanitis: what to know

busEver since we moved to Huntsville, I have been curious about our public transportation, both by the blatant lack of it and its actual existence in the form of a bus network. Some of the buses are fitted with bike racks, suggesting a kind of Northern European progressiveness, when in fact walking or cycling as a mode of actual transport denotes economic catastrophe. Most buses advertise a local bail bondsmen.

Our city’s transportation system is a shuttle bus that runs in a loop, a closed circuit, a journey of back of and forth with no promise of progress. You see the shuttle stop signs here and there, but seldom passengers waiting to board. There are not, generally, any bus shelters, no signs to indicate when a bus will come and where it might take you.

I find the maps on the city’s website and decide that I have some kind of moral duty as a citizen to ride one, just to know what it is like, where it goes, who rides, even though I have a pretty good idea, because I see the people who wait for it at the Bad Wal-Mart.

But what else compels me to ride? It is my epiphanitis, a disease invented by the Older Daughter as she studied English and science vocabulary in the weeks leading up to her midterms, turning each of the words into conditions.

If you were to read about what she’s got, playing with language would not be one of the attributes. Language would be listed as a deficit, as would sociability, whereas she is the most outgoing member of our family. Even our dog is an introvert.

I wait for the bus in one of the city’s few bus shelters, in the mall parking lot. The buses run on an hourly schedule. As soon as I sit down on the bench I join a community. People nod and wave to me, but discreetly, and the mall, on this overcast Monday, becomes more sociable than I have ever known it to be. Not everyone says hello, though, not the older people who come in workout clothes for walking laps in the atrium, but the workers do, the people who are in less of a hurry, including the lady who joins me on the bench, who will, fifteen minutes later, hold the passengers in the front of the bus rapt with her warnings that wireless fraudsters are stealing your credit card information right out of your pocket on this bus.

I had thought I was getting on a core loop bus but it is soon clear that my map had not indicated that there were other buses that stopped there. There are loops off of the main loop and this is one of those.

When I see the buses around town, they look empty but when I board, nearly every seat is taken. A man moves his bag off a seat so I can sit. The seats feel like they have been taken as parts out of other vehicles. They are tilted back too far so that either you have to slide down in them or sit up somewhat awkwardly.

The woman occupying three seats with duffel bags and a powerful smell and the pregnant, something-a-little-off girl get off at the hospital. More people get on. At the Nice Wal-Mart we pick up a gaunt man with long greying hair who I sometimes see walking along the roads and think of, therefore, as Walking Jesus. We pick up adults with disabilities. A woman and some too-young-for-school children. The ad racks inside the bus are empty, with only one poster, which is coming loose, with information about having a collapsed lung.

The bus takes us into modest developments with optimistic names, like Malibu. How strange it is to travel along these familiar roads as if I had dropped entirely out of my own life, where we meet inconvenience with a sarcastic, deadpan, “Really?” and into one of disenfranchised resignation and the obedient punctuality of those who know that what could be a 10-minute drive is an hour’s journey plus the time to get to the bus stop and go from it to wherever you’re going and repeat the whole thing to get back and whaddya gonna do about it. No one runs for the bus. People who ride the bus know the schedule.

A middle class looking retiree in a wind breaker gets on. At the Target mall, the bus pulls into the center of a section of parking lot, at the way opposite end of where the Target is, and waits for several minutes. A guy wearing a stonewashed jeans and jacket combo and Devo glasses gets on. Later, when my seatmate starts to tell me about a shooting on the number 4 bus and about all the enemies in the world and technology, but there’s only one true enemy and we know who that is, the man in the Devo glasses raises his eyebrows and gives me a half-smile.

1) You assume there will be more to it than that.

2) You turn to books.

When you, as a parent, first catch a whiff of a developmental issue you dive headfirst into the literature. If you can figure out what they have maybe someone will tell you how to fix it. You go to appointments and answer a lot of questions, you fill out hundreds of surveys. You keep thinking that at the end of all the questions there will be some answers, some light at the end of the tunnel, but there is always just the tunnel, the fattening file.

3) You find the answer in people.

After a while you start looking for different things: a program, a service, something for the next stage, a resource. Each experience yields something unexpected. Through the block of six sessions of language therapy we meet T., who told us about the school the older daughter would go to for seven years.

We lived two lives, one at the private international school, another at the state-run primary school. I went to parenting groups on housing estates and to Harley Street for speech therapy, sensory-integration therapy. Parents are parents. Kids are kids. Resources vary.

Over the years, I got good at locating programs. Once you have school placement figured out, you need activities. Summers are challenging. There will not be a program for your child, but maybe we can try it out. You will have to list their deficits on more forms and describe them as truthfully, hopefully, protectively as you can stand to. You leave out the humor and lyricism, though on a daily basis I can’t imagine what we would do without it. Epiphanitis is not an affliction, but a gift.

Now we are trying to find a summer camp. Ah, the application process for a kid with a disability. Does an attempt to be more honest mean that your child might miss out on something, losing her place to a child who has been more victorious in their battle to kick the ass of what would otherwise define her?

We’re not looking for answers, but for the right person.

4) You overthink it.

5) You weren’t expecting this.

Sometime before the Older Daughter was born I bought a big box of crayons because having them was like looking down the road to childhood. I didn’t know anything about the first couple of years. What’s a receiving blanket? Why do I need this or that? I didn’t know how far off crayons were, how many discussions I would have about pincer grip and shoulder stability and fine and gross motor skills. That what had come easily for me as a child would be a struggle for her. And anyway, I had found crayons frustrating, too. Once applied to paper their intense colors were thin and insubstantial and I gave them up for oil pastels and then watercolor markers. A fresh box of crayons is what childhood is supposed to be like and then how it isn’t.

6) You keep looking for answers.

You realize that epiphanitis by another name might be hope.

7) You live for epiphany.

Riding the bus here is like being the parent of a child who is different, or maybe being like a person who is different. The bus is a slower vehicle in a restricted path moving through its route, while the cars travel an easier, more efficient path. When the man tires of telling me about Satan he starts speaking to a man nearby, Haven’t seen you for while, been off the buses, getting rides with my brother.

You are in a community, you recognize each other, members of the tribe, the particular hurdles you share, like the way people were nodding hello at the bus shelter. Hard times, we know. There are more people on the bus than you would have thought. So you will always be on the bus, but the bus doesn’t have to be the way it is. The bus could better integrated into the city. The bus could be happier. The bus could be better understood by those who only notice it in passing and never stop to think, that could be me, or wonder what it’s like to not be them. Really? Yes, really.

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2 Replies to “Epiphanitis: what to know”

  1. Hi Rebecca – Love this so much. I’m so glad you are writing about this extra hard part of the already hard job of parenting in such a beautiful, thoughtful & atypical way. A very fresh voice! xoxo

    Like

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