Joanne Madsen
Mrs. Phoebe says we get audited every year and the services the kids receive have to be in the database. Thereās also the possibility of a surprise inspection by the state although she says thatās very unlikely because ILLC is so well managed. My immediate task is to enter everything on record starting from now and working backward to 2000. Thatās over ten years of three-or four-inch-thick files per criplet.
The paperwork in the files is often illegibly handwritten, in pencil sometimes, has stains of unknown origin, or never made sense in the first place. Some forms were used for a few years and discontinued. Others were invented along the way. Thereās no consistency to how theyāre filled outāsome people write three paragraphs and some write three words. Besides histories, the forms are supposed to record the health care the kids receive, the amount of medical supplies each kid uses, doctor appointments, counseling sessions, release-of-information forms, hospital stays, number of recreation hours spent, transportation provided. Number of pickles eaten, amount of air breathed, blinks per hour. Iām in the belly of the beast.
Mrs. Phoebe says they are changing over to a better system where the houseparents will input data onto computers themselves. She says all this will happen in about six months, but they have to get up to date. I ask who will train the staff in the use of the database and she says, āI thought you would do that.ā Iām a dead man.
After a few hours of typing in all this minutiae my neck starts aching and my eyes get blurry whenever I look away from the computer screen. My pupils have dilated to the exact circumference needed to stare at black letters on a white screen. Looking down a hallway or at someoneās face is actually painful.
I have to tilt. My wheelchair has a miraculous tilt mechanism. I press a button and it tilts back. You can tilt back so far youāre actually looking at the ceiling. You canāt imagine the practical applications this has. Besides the obvious, which is comfort. Take the dentist, for instance. Itās bad enough to have to go to the dentist, but imagine having to ask him to help lift you out of your wheelchair and into the dentist chair. I mean, really. Inevitably one of your shoes falls off during the process and your clothes get all smashed up and then you get two or three hygienists in there apologizing way more than is necessary. Now all I have to do is tilt and cringe.
After days and weeks of nothing but forms and numbers, youāll start to notice how certain forms you wouldnāt expect to see all that often seem to pop up quite a bit. And some forms youād predict youād see all the time you rarely see at all. For example, out of approximately eighty kids, how many times do they end up in the hospital in a seven-month period? Not just the ER but full admission. A few? Ten? Try thirty-two full admissions in a seven-month period. Those are documented instances of the ILLC doctor on callāDr. Cavioliniāreferring a child for a hospital stay. About nine infections and eight pressure sores. Sixteen trips for what appear to be several CTs or MRIs and various other tests per kid. One girl died from MRSA, that superbug the hospitals are freaked about because itās almost antibiotic resistant. Thatās a lotāa lot of serious health problems. I havenāt been in an emergency room or admitted to a hospital in years. And I am really disabled. Really disabled. In theory, at least, theyāre supposed to keep these kids healthy.
At about five thirty I go down the hall to the accessible bathroom that I share with the girls. None of the staff bathrooms have accessible stalls, of course. At ILLC, all crips are children, including me, apparently. Mrs. Phoebe even pats me on the head from time to time. Iāve tried to object, but it happens really fast, like a drive-by patting.
Most of the kids are in the cafeteria at the moment, so I have the bathroom more or less to myself. Thereās a girl about ten years old who has just finished spraying her hair with what smells like bug repellent and is now leaving.
āHi, Cleo, bye, Cleo,ā I call to her.
āBye, Jane,ā she says. Most of them donāt know my name yet. But theyāre getting closer.
Ricky drives me home about twice a week. He comes by my office at six oāclock. Sometimes we go to Mr. Beef and sit in the ILLC bus eating and talking. Tonight weāre on our way to a place called La Fonda in Pilsen.
Iām taking a few swallows of beer when he says, āWant to come to my nephewās birthday party?ā
It takes all my self-control to refrain from a spit-take. Iām unprepared for the family thing to rear its ugly head so soon. Iām 90 percent sure the invitation means no more or less than any of Rickyās questionsāhis conversation is relatively free of subtext. In any case, thereās no way Iām going. Where thereās a birthday party, there is family, and you never know how someoneās family is going to react. To the disability.
āIām sure it wonāt be accessible,ā I say. āPeopleās houses never are. You know.ā
He says, āItās at Chuck E. Cheese.ā
I say, āYou want me to go to Chuck E. Cheese?ā
āYeah, why not?ā he says, with a mouth full of tortilla chips.
āYou canāt even hear yourself scream in there. Thereāll be five hundred preadolescents amped on high-fructose corn syrup. Iām not even exaggerating.ā
āAnd?ā he says.
āThank you. Iām really glad to be invited,ā I lie, ābut itās not a good idea. For me to go.ā
He shrugs and says, āOkay.ā
I was hoping heād ask why it wasnāt a good idea, but being a person who relies heavily on subtext, I didnāt say so. The guacamole arrives to change the subject.
āI have a question,ā I say. āHow many of the kids at ILLC would you guess were admitted to St. Theresaās during a seven-month period in 2011? Iām only up to mid-July.ā
āDonāt know,ā he says. āHow many? Can you pass the green salsa?ā
āAdmitted. Not just the emergency room.ā
āTen percent?ā he says.
āWell, I didnāt do a percent thing,ā I say. āI just added up the number. Out of eighty-one kids. Thatās how many kids we have now, not then. Then it was eighty. How many?ā
āHold up. Iām lost.ā
āThirty-two out of roughly eighty kids were admitted to St. Theresaās in a seven-month period.ā
āReally?ā he says. He pours the salsa over the guacamole. āSounds like a lot. You think thatās a lot?ā
āYes, I do,ā I say. āThatās almost half the kids. In about half a year. Thatās a lot, right?ā
āTheyāre always sick. Theyāre always coughing or sneezing all over the place. ILLC is like one of thoseāwhat do you call āem?ā
āWhat? I donāt know.ā
āNo, where thereās viruses and fluāone of thoseāand they do tests and swab the germs on it. Come on, one of thoseāā
āPetri dishes?ā
āPetri dishes. Itās like that. The place is crawling with bugs.ā
āOkay, but they get referred to the hospital for tests. Specific tests for X-rays and scans and MRIs.ā
āA lot of the kids have these shunts,ā he says, drawing an imaginary picture on his head with his finger. āShunts in their heads. Like if they have spina bifida or cerebral palsy they wind up with shunts a lot of times. Itās like they get fluid building up in their heads and the shunt drains the fluid off. To somewhere, and you canāt see the tube. Itās not obvious, itās, you know, little, youād have to look for it.ā He gives up on the illustration. āThey get sick all the time from those. All the time. They get headachesāmigrainesāand throw up and the nurse calls the EMTs. Or sometimes they get sick from bedsores and they run some high fevers from those, so thatās another reason. It sounds like a big number but for these kids it could be normal.ā
The waitress comes with our dinners and says, āCan I get you anything else?ā She says it to Ricky, but I figure it was meant for both of us, so I ask for more napkins.
āWhy do they get all those bedsores?ā
I say. āFrom not moving around as much, right?ā
The waitress returns with a few napkins and presents them to Ricky. I have the power to become invisible in some restaurants. I just never know which restaurants. Or how to turn the power off.
I say, āBut isnāt that something theyāre supposed to do at a place like ILLC? Make sure they move around more? Help them change positions when theyāre in bed? Take care of their skin?ā
I donāt really know why Iām pushing this. The thing about shunts makes sense and a lot of crips get sores. Even non-nursing-home crips. But itās a guaranteed side effect of nursing-home living. They might as well put it in the bylaws. I eat a bite of enchilada and drink a little more beer although I can already feel that my face is warm. This whole ānephewās birthdayā thing has put me off my feed.
āI bet ILLC uses the cheapest mattresses on the market,ā I say. āItās like they want them to get sick.ā
āWhat,ā he says, āyou think thereās a conspiracy to make them get bedsores?ā
āWhy not? How else can you explain it?ā I can hear myself and I sound angry. I look up at him to see if heās getting angry too. Heās smiling at me. Oh. āIām justāignore me,ā I say. āIām delusional from looking at forms all day.ā
āI remember this one time though,ā he says, reaching over to brush some fuzz off my sweater. āThe doctorāwhatās his name?āSpaghetti, Rotini ā¦ā
āI am not guessing,ā I say.
āRavioli,ā he says.
āDr. Ravioli,ā I say.
āRight,ā he says. āYou mean Dr. Caviolini?ā
āRavioli is easier to remember.ā
āTrue,ā I say.
āYeah, so Dr. Ravioli sent one of the kids, Michael Jacksonāā
āYeah, I know Michael Jackson,ā I say. āNot the āBillie Jeanā Michael Jacksonāā
āRight, right, the spina bifida Michael Jackson.ā
āRight.ā
āSo he was fine, right? Totally cool. Great little guy. Out of the blue, Ravioli sends him to the hospital for a week. I drove him over there. Michaelās like, āWhy am I going to the hospital?ā ā
āWhy was he?ā
āI donāt know. When I pick him up the next week, I ask Michael is he feeling better. He says he wasnāt sick, he just had some X-rays.ā
āWhat hospital?ā
āSt. Theresa.ā
āWhatās that place like?ā
āItās empty,ā he says. āYou walk around even a little and it...