The other day a friend asked me what it is exactly that I do for money. So I thought I would try to cover that a little bit here, since someday down the road this job will have been just a blip along the way and I won’t remember much about the details.
I work for a non profit organization that serves people and families that are dealing with a terrible and deadly disease. I don’t want anybody out there trying to Google for legitimate information about it and wind up in my little pit here, so I’ll be all secret-y: the disease is named after an old timey sports figure and goes by initials, which are the same initials as Abby Loves Shoes. Got that? Okay. Because basically it means that your muscles and your brain are going to stop talking, and the muscles will stop working and you will be completely paralyzed, including your tongue and your face and your fingers and your toes–everything, so no moving or talking, and your mind will remain sharp as a tack. And you will be trapped in your own rigid body. And then you’ll slowly lose the ability to breathe and then you will leave this world. It’s grim.
So I visit patients and families, try to explain things to them, loan them pieces of equipment, answer questions, talk about end-of-life wishes, and help them prepare for the shitty journey of this shitty disease.
It sounds like a heart-wrenching job, and it is in a lot of ways. But for me, it is surprisingly not that difficult. I think partially because I’ve got so much other shit going on and I can’t focus well on anything, even dying people, and also (mostly) because I’ve become really good at protecting myself emotionally when it comes to this kind of work. Maybe I’ll be hashing out some serious shit with a therapist in twenty years, but for now, I can keep my distance surprisingly well.
Anyway. I do a lot of driving around and trying to find patients’ houses to do home visits. And a lot of them live out in the nowheres in rural Tennessee. This is a part of the job I am really terrible at, as I am missing some kind of directional sequence fold in my brain. I drive along, and whatever just happened? Whatever turn I just made? Completely gone, like it never happened. I have the directional memory of a rat, and that makes the job both more difficult and more interesting (see the spaceship house? ) I have learned to trust MapQuest over Google Maps, by a long shot. And I am always so satisfied and amazed when the maps are always right, a little glimpse of the logic and the orderliness of the world according to a map. That things are there, where they’re supposed to be. Like a complicated recipe that actually turns out looking a little bit like the picture. A finished crossword. That kind of satisfaction.
I love the drives, though, as they are usually long stretches of peaceful time for me. I think of things to write about. I think of things I want to make. I think of things I want to do and things I want to stop doing. I drive along in the bright green hills in a bit of a misty rain and I hear Gymnopedie No. 1 and I get teary about the perfection of the imperfect moment. It’s my informal meditation, and probably the reason I can’t find my own ass with both hands when I’m driving, because the destination is really so secondary.
I also eat fast food on the road, a habit I’d broken completely until this job. I now remember the difference between a Wendy’s cheese sandwich and the same cheese sandwich from McDonalds. I can identify fries by brand from twenty feet away. And while I don’t love the idea of eating so much total shit, I really don’t like the idea of stepping foot in an unnamed, dilapidated shack with a rented marquee out front that reads, “We make pizza now.” Because most of the time, that is my only other option. At least I know the McDonalds is going to have running water.
I also kick myself on every drive for not bringing a camera along, because I can’t capture the crazy beauty and imbalance I see all along the way, like the falling down house this week at the intersection of two county roads, with junk and tires and an old bed frame and some lawn chairs covering the porch, littering the lawn. Painted in large letters on the front of the house: “I’m Deaf.” Painted under that: “Beware of Dog” Lying under that: ninety year old dog, fast asleep, maybe dead or close to it.
Or the kelly-green field full of literally romping goats and sheep, and chickens and ducks and all kinds of other creatures, so chock full of story book animals that Birdy would have had a stroke just looking at it. Or the giant Jesus perched on the side of a hill, an adoring mass of broken-down Fords bowing at his feet. But the camera stays at home on the desk and I just have to tell you about it.
And I love the crazy families the most, like the over-educated, dirt-poor rural religious compound types that keep an insane collection of fringe-type religious pamphlets displayed, library style, and I feel like they’re sizing me up to make a stew out of me with some potatoes as I sit in their living room and tell them step-by-step how their loved one is going to die. I feel certain that I will walk into a situation at some point where the patient has been dead for months and the spouse has lost it and keeps trying to sit them up in bed to take a drink of water. Because people? People are crazy. It’s the ones drowning in resources, financially on top, mere miles from fantastic medical care and established social support that can’t cope with the thought of a missed pedicure that I’d prefer to avoid like the plague. Because, yawn. Give me nutso bonzo any day.
And I do some things in an office, as well, like make up forms and return phone calls. That’s the part of my job that knits my back into a hard wall of pain from my keyboard-centered posture and makes me want to run screaming from the building sometimes. But it’s also the part of my job that makes it possible to catch up on bloglines and get all worked up about craft projects I’ll never start. I have the time to write from time to time, or just to TCB online for a little while. So no complaints. Except for the people dying all the time, I mean.