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Hospital Stays and Visits > A Teenager's Reflection on CF : The Little I'm Not

This essay is by Kathleen Cole Burke, a remarkable young woman with cystic fibrosis. She wrote it for an essay contest in college and won "Honorable Mention." Thanks, Kathleen, for sharing it with us. You go girl!

                                                                                The Little I’m Not

                                                                           By Kathleen Cole Burke

If God is The Great I Am, then I am the little I’m Not. Just, I’m not. I want to be all that God is but I’m not. I’m not healthy, and I’m not to blame. I’m not cystic fibrosis, but CF seems to think that I am. It’s wrong, I’m not. My mom got really upset one day and said, "Don’t be eager to join God so soon." Well, I’m not. I promise you, I’m not.

I am to be a patient on 6 Long, which is pediatrics, even though I’m 19, for a duration of 14 days. I pack lots of sweats and lots of clean socks. When my mom and I get here, I get a cute Disney character breathing mask. I avoid doorknobs, use sanitizer every 30 seconds. My mom knows everything and so she talks to all the doctors, and I’m tired and glad she knows so much. They’ve put me on Contact Isolation, which means the doctors come in wearing Hazmat suits and I can’t leave the room, but the room I’m assigned has no shower. At night, my mom washes my hair with baby shampoo as I bend over the sink. At least I don’t have to wear a hospital gown. Treatment four times a day, plus IV meds, and they wake me up every six hours to check my pulse.

The third day I wake up at six a.m. and pray the Rosary. The nurse comes in while I’m praying and I know that she’s caught me at the best moment of my life. It’s the third day and the lack of appetite still just feels like a nice fast and sleep still comes okay. I somehow manage to get dressed into people clothes before rounds, which is a miracle. I don’t like facing all those doctors in my pajamas. It just feels sloppy. I look sicker in pajamas than I do in people clothes. The doctors and residents are nice. I met them yesterday, too. There is a cute med student in the bunch so I’m extra glad for my people clothes. Before all the talk, the attending and her three cohorts descend on my body to listen to me breathe (as they always do). They did not warn or ask me, so here they all are, on my body, without my permission, and I can’t breathe. They back away. I’m still having trouble breathing. Those hands came out of nowhere. They back off. I let them listen after I’ve steadied myself but I do not feel okay. I don’t want to answer their questions but I’m not given a choice and then they leave. My nurse comes in, who I know. I tell her. She goes to get them. They all come back. She begins: Kathleen has something she would like to request. I say: You need to ask my permission before you touch me. I know all of the residents need to have a listen, to learn what to listen to, but you must ask.

I almost cry. I feel ashamed for them that I am nineteen and she is an attending physician at a major hospital and she doesn’t know what consent means. I hope the interns and residents remember this for the rest of their careers. You need to ask my permission before you touch me. They do, all four, even the attending, one after the other. I am still shaking, but instead of rocks, their stethoscopes feel like feathers, and we manage. My dad brings dinner that night and he, my mom, my brother Kevin and I try my hardest to finish my food. My brother Brian’s still at work in Utah.

Fourth day blah. The only exciting thing that happens is I’m moved to a room with a shower. Hooray! I feel like a princess. My new room is purple. I break it in by watching “Hanna Montana” all day, and reading a book on the Psalms. Cute med student comes by to ask me about random things. There’s no news because the attending is still waiting for test results to do anything, so this is give-the-students-a-chance-to-play-real-doctor day and they all come in and ask the same stuff. I do have a problem, actually, but I don’t want to tell cute med student, so all I say is, can you send in a female doctor? He gives me crap for Miley, and also says that I finally got permission to go to the Courtyard, as long as I don’t touch any doorknobs or talk to anyone and leave the floor immediately and only go to the Courtyard. YES! A half hour of freedom! I go to the outside Courtyard, which is maybe twenty feet long, and very skinny. I look like a crazy person, doing laps in this small courtyard with a Minnie Mouse face mask on and dragging an IV pole. There are offices that look out on to the Courtyard and I wave at all the people. I feel freer than they are. By the end of the half hour, I’m exhausted, and it takes me a while to breathe normally again. But I realize how much God there is in sunlight. The doctors might say I feel happier from all the Vitamin D in the Sun, which is maybe, but I know I feel happier because I know who created the Sun and the happiness in the beginning. The Courtyard is Eden, but instead of biting any apples I go take a nap. My body knows something about evil and I’m tired from it.

My family comes and we all eat dinner and watch a movie about the Holocaust, and it un-depresses me, because the hospital may suck but it’s no Holocaust. Perspective helps my sixteenth round of treatment in four days go easier.

Fifth day? Is that what day it is? Recap: every day thus far I’ve requested Communion first thing in the morning. Brother Louis the Franciscan chaplain usually brings it, and he and I pray together. One scary moment I forget the words to the “Our Father”. CF has nothing to do with my brain, so I don’t get why I forgot and I get scared of the IV tree and what’s in it. There are six bags on my IV and I wonder which one makes me forget, or if I’m just tired. I don’t know. Louis and I talk about the faith. I tell him I’m getting confirmed in the fall and he tells me he’s getting ordained as a priest soon, too. He brings me an Advanced Directive because I ask for one. I want to stare at it. Through Day 7, I think the directive over, and then decide to check the box, Take Me Off the Vegetable Brain Machine If It Comes to That. I tell my dad about it. I don’t tell my mom. I almost give the paper to Louis, who says we need someone to notarize it. I decide to ignore really slim chances instead and rip it up.

I call some friends, some of whom are there for me and some are scared, so, aren’t there. Some say they’re busy; well, I’m busy too. Some I hear from every day. Some I know are praying for me. I know it. My middle school best friend doesn’t show up til Day 10, and only because I call her to ask where she is. Busy, she says. Scared, I say. She gets over whatever it is and brings “Twilight” and visits for a while. The Capuchin priest comes in with Communion and he instantly recognizes the movie. Priests are so funny. 

I have won two bingos. Day 4 my aunt came, and we played TV 6 Long bingo, where everybody wins, and I win the new Beyoncé CD. My mom, aunt and I all dance to “Single Ladies” and the nurse and RT join in. The next week I win a shiny makeup case. 

The nurses and respiratory therapists are great. We usually watch “Law and Order” or “House” and laugh at all the things they get wrong, like that the doctors are always available to change a bandage. The doctors are great, but they don’t change bandages or rush in at 3 AM when the IV beeps. And beep it does.

My mom’s friends come and bring me books, nail polish, TV shows, and lip gloss. I never wear makeup or nail polish or watch “Hanna Montana” but there’s something comforting about these normal concerns. My brother’s old girlfriend visits and she paints my nails blue in the Courtyard (before Courtyard privileges are taken away by the wishy-washy attending). Blue nails with a lung disease isn’t the smartest combo in a hospital, I decide, so when she leaves I take it off. Plus, it was chipping. My friend Heather visits as a surprise, but I knew she’d show up. Never any doubt that she’d be there. 

Day 9 is Sunday and the attending who revoked Courtyard privileges also revokes Mass privileges. She said she wouldn’t and then took it back. Contact isolation. This is the only day I cry. How do you expect me to get better if I can’t go to Mass? How can my body heal if I don’t receive His? There are two things getting sicker, in this room, my body and my spirit, and they took Mass away. The poor nurse feels so bad, and it’s not her fault, which I know, and I feel bad too and apologize to her. She tells me the channel the Mass will be aired on. I’m so tired I almost sleep through it. 

My mom comes every day. Did I mention? Every day. My dad brings food over after work. My brother Kevin was going into the city to go to bars with his friends but ditched them for an hour to see me (the night nurse “forgot” when visiting hours were over, thank you, nurse). My brother Brian takes his new girlfriend on vacation. They’d been planning it for a while. He asks me if it’s okay and I lie and say it is. He finally comes on Day 13, right before I get out.           

Somewhere in all this I read the entire Twilight series. I swore up and down that I’d never ever read them, and then they were the only thing in the teen library, and I gotta tell you those books can kill a boring Day 6-10. One night, a nurse took drew some blood for labs while I was asleep, and I was convince the lab tests were to see if I’m a vampire. I woke up in the morning, and told her, and she thought it was funny. All the nurses and I talked about Team Jacob vs. Team Edward. I’m still undecided. Right now, I think I’m just Team Doctors Get Me Out of Here. 

Day 10 we find out that I don’t have the infection they thought I had so contact isolation was entirely unnecessary and I could have gone to Mass. However, after ten days, my lungs still aren’t better so I’m sentenced to four more days plus one more IV antibiotic. It makes me weak and humbling things happen so that I have to ask for help when only babies and old people do. No chance of death, no infection, though. The chance was very slim, so there was never a chance in anyone else’s mind, but there was in mine. Slight is enough, for ten days.

Pizza cousin comes and brings me comfy socks and rubs my feet and we talk for hours and draw pictures. She’s the sister I never had. She’s my best and favorite human. She’s not too busy to come, which is all it takes these days to make you top of my list (where she already was).           

Day 10-13 are the worst. Day 11 my play is performed in Walnut Creek and I can’t go see it, but I video chat with all the actors and tell them I’m proud. My parents say the show went well, and it makes me happy. I can go to the Courtyard again but I don’t want to. I forget to ask for Communion in the morning. Louis comes anyway, and he and I pray. Oh, St. John of the Cross, I recognize a Dark Night when I see one and I know this is it but I’m failing on my end. I don’t know how to write poetry now. I don’t think I can even pray the Rosary. I just beg God. I just beg Him all the time.           

Josh comes. He and his mother. When I find out his mom’s coming, I rush around to clean my room. I know she won’t care, but I do. If she came to my home, it would certainly be clean! And I don’t want to lower my standards even though I have a reason. I know Josh hates hospitals. He sits on the floor, and is kinda quiet, which is his way, but it’s not my way or his mother’s way so she and I talk a lot. It’s not til the end of the visit that we notice he’s sitting on a hospital floor, and make him get up and wash his hands. I’m very embarrassed, I wish I’d thought. We three pray before we go, and I think, when two or more are gathered in My name… and I think this is a good moment in my life, too. I know he hates hospitals, but he came, and he was good, and I hope Heaven writes that down. I did, right in my heart.           

When I leave, I write every doctor, resident, intern, and the nurses a thank-you note, and of course, Louis the chaplain and the two activities coordinators who brought me paints, and movies.  I want to write in the four doctors’ notes: Please remember. You have to ask my permission before you touch me. I don’t. Instead, I thank them for doing such a good job (because they did). They didn’t mean it. They just assumed; she has a lung disease. We need to listen to her lungs. They forgot that I’m not just lungs, though. I want to say, write that down in my chart. 
Day 13, my brother comes back from his vacation and visits, and I really love the time I spend with him because he’s just the best. I can’t believe how great my brothers are. My night nurse comes in with medicine, and notices the Medjugorje rosary on my bed, and we talk about how I went and she’s always wanted to go. I give her my rosary. In exchange, she takes my address, and two months later mails me her choir’s CD of beautiful liturgical music.

One month later, Brian and I talk it out and I cry and say you gotta show up and he says he’s sorry and he will. The day I leave 6 Long, my dad gives all the nurses cupcakes and my mom hugs me all the time because my left arm is back without any IVs in it at all. Three months later, I am confirmed in the Catholic faith as Kathleen Teresa and I hope Brother Louis will soon be Father Louis. I am still the little I’m Not, but so’s everybody, and now I’m officially, with a fire mark on my soul, God’s little I’m Not, and I’m Not in the hospital anymore, I’m at school. 

At school, I learn how to respect my body, with things like an early bedtime and frequent healthy meals. My Housemates at school make it so I never do treatment by myself, and I think how lucky I am to have a family on both coasts. My friends are there when I am confirmed, and I still beg God all the time. I listen to that nurse’s CD and I pray the Rosary when I can, and most of all I stay out of the hospital, and my body is God’s, and this is how the hospital taught me that my body is a temple: because of the one Sunday I couldn’t go to Mass and I yearned for God, because I was on so much medicine I barely walked the Courtyard and now I can run all the time, because I taught them to ask my permission to help me and they did. So I sleep a little righter, and eat a little better, and I’m still a little I’m not and I’m also growing up. And the choir music is beautiful. 

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