Joanne Madsen
Mrs. Phoebe says we get audited every year and the services the kids receive have to be in the database. Thereâs also the possibility of a surprise inspection by the state although she says thatâs 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. Thatâs 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. Thereâs no consistency to how theyâre filled outâsome 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. Iâm 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, âI thought you would do that.â Iâm 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 someoneâs 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 youâre actually looking at the ceiling. You canât imagine the practical applications this has. Besides the obvious, which is comfort. Take the dentist, for instance. Itâs 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, youâll start to notice how certain forms you wouldnât expect to see all that often seem to pop up quite a bit. And some forms youâd predict youâd 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 callâDr. Cavioliniâreferring 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 itâs almost antibiotic resistant. Thatâs a lotâa lot of serious health problems. I havenât been in an emergency room or admitted to a hospital in years. And I am really disabled. Really disabled. In theory, at least, theyâre 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. Iâve 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. Thereâs a girl about ten years old who has just finished spraying her hair with what smells like bug repellent and is now leaving.
âHi, Cleo, bye, Cleo,â I call to her.
âBye, Jane,â she says. Most of them donât know my name yet. But theyâre getting closer.
Ricky drives me home about twice a week. He comes by my office at six oâclock. Sometimes we go to Mr. Beef and sit in the ILLC bus eating and talking. Tonight weâre on our way to a place called La Fonda in Pilsen.
Iâm taking a few swallows of beer when he says, âWant to come to my nephewâs birthday party?â
It takes all my self-control to refrain from a spit-take. Iâm unprepared for the family thing to rear its ugly head so soon. Iâm 90 percent sure the invitation means no more or less than any of Rickyâs questionsâhis conversation is relatively free of subtext. In any case, thereâs no way Iâm going. Where thereâs a birthday party, there is family, and you never know how someoneâs family is going to react. To the disability.
âIâm sure it wonât be accessible,â I say. âPeopleâs houses never are. You know.â
He says, âItâs at Chuck E. Cheese.â
I say, âYou want me to go to Chuck E. Cheese?â
âYeah, why not?â he says, with a mouth full of tortilla chips.
âYou canât even hear yourself scream in there. Thereâll be five hundred preadolescents amped on high-fructose corn syrup. Iâm not even exaggerating.â
âAnd?â he says.
âThank you. Iâm really glad to be invited,â I lie, âbut itâs not a good idea. For me to go.â
He shrugs and says, âOkay.â
I was hoping heâd ask why it wasnât a good idea, but being a person who relies heavily on subtext, I didnât say so. The guacamole arrives to change the subject.
âI have a question,â I say. âHow many of the kids at ILLC would you guess were admitted to St. Theresaâs during a seven-month period in 2011? Iâm only up to mid-July.â
âDonât know,â he says. âHow many? Can you pass the green salsa?â
âAdmitted. Not just the emergency room.â
âTen percent?â he says.
âWell, I didnât do a percent thing,â I say. âI just added up the number. Out of eighty-one kids. Thatâs how many kids we have now, not then. Then it was eighty. How many?â
âHold up. Iâm lost.â
âThirty-two out of roughly eighty kids were admitted to St. Theresaâs in a seven-month period.â
âReally?â he says. He pours the salsa over the guacamole. âSounds like a lot. You think thatâs a lot?â
âYes, I do,â I say. âThatâs almost half the kids. In about half a year. Thatâs a lot, right?â
âTheyâre always sick. Theyâre always coughing or sneezing all over the place. ILLC is like one of thoseâwhat do you call âem?â
âWhat? I donât know.â
âNo, where thereâs viruses and fluâone of thoseâand they do tests and swab the germs on it. Come on, one of thoseââ
âPetri dishes?â
âPetri dishes. Itâs like that. The place is crawling with bugs.â
âOkay, but they get referred to the hospital for tests. Specific tests for X-rays and scans and MRIs.â
âA lot of the kids have these shunts,â he says, drawing an imaginary picture on his head with his finger. âShunts in their heads. Like if they have spina bifida or cerebral palsy they wind up with shunts a lot of times. Itâs like they get fluid building up in their heads and the shunt drains the fluid off. To somewhere, and you canât see the tube. Itâs not obvious, itâs, you know, little, youâd have to look for it.â He gives up on the illustration. âThey get sick all the time from those. All the time. They get headachesâmigrainesâand throw up and the nurse calls the EMTs. Or sometimes they get sick from bedsores and they run some high fevers from those, so thatâs another reason. It sounds like a big number but for these kids it could be normal.â
The waitress comes with our dinners and says, âCan I get you anything else?â She says it to Ricky, but I figure it was meant for both of us, so I ask for more napkins.
âWhy do they get all those bedsores?â
I say. âFrom not moving around as much, right?â
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, âBut isnât that something theyâre supposed to do at a place like ILLC? Make sure they move around more? Help them change positions when theyâre in bed? Take care of their skin?â
I donât really know why Iâm pushing this. The thing about shunts makes sense and a lot of crips get sores. Even non-nursing-home crips. But itâs 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 ânephewâs birthdayâ thing has put me off my feed.
âI bet ILLC uses the cheapest mattresses on the market,â I say. âItâs like they want them to get sick.â
âWhat,â he says, âyou think thereâs a conspiracy to make them get bedsores?â
âWhy not? How else can you explain it?â I can hear myself and I sound angry. I look up at him to see if heâs getting angry too. Heâs smiling at me. Oh. âIâm justâignore me,â I say. âIâm delusional from looking at forms all day.â
âI remember this one time though,â he says, reaching over to brush some fuzz off my sweater. âThe doctorâwhatâs his name?âSpaghetti, Rotini âŠâ
âI am not guessing,â I say.
âRavioli,â he says.
âDr. Ravioli,â I say.
âRight,â he says. âYou mean Dr. Caviolini?â
âRavioli is easier to remember.â
âTrue,â I say.
âYeah, so Dr. Ravioli sent one of the kids, Michael Jacksonââ
âYeah, I know Michael Jackson,â I say. âNot the âBillie Jeanâ Michael Jacksonââ
âRight, right, the spina bifida Michael Jackson.â
âRight.â
âSo 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. Michaelâs like, âWhy am I going to the hospital?â â
âWhy was he?â
âI donât know. When I pick him up the next week, I ask Michael is he feeling better. He says he wasnât sick, he just had some X-rays.â
âWhat hospital?â
âSt. Theresa.â
âWhatâs that place like?â
âItâs empty,â he says. âYou walk around even a little and it...