Every day I try to walk through the halls of the hospital pretending not to know how bad things really are. Trying to smile. Trying to ignore how much it really hurts and how scared I really am. It’s not hard to pretend; this has been my life since I was a baby. So much of my life has been taken away as I rot in hospitals, emergency rooms, doctors’ offices; wearing this horrible loud vest that monitors my breathing.
Every day I walk around knowing that this horrible poison is in my body—growing in me like a cancer—eating my body like leprosy. And my family and friends treat me like I’m already dead.
I think of all the friends I’ve known, that have slowly died right before my eyes. I see people like me every few months, and sometimes—if it’s been a while—I say to myself, “Damn, he’s really starting to look horrible!”
Sometimes I’ll think how awful and destructive sounding someone’s cough has gotten. Or how much weight someone has lost. I’ll notice that so-and-so’s got more machines dragging behind them—barely keeping them half alive. I wonder if when people see me they think the same thing?
Sometimes if I’m very, very sick and feel like I’m dying—I make it a point to gather all of my strength and stare at myself in the mirror. I’ve done this over the years and over the years the reflection that looks back at me has gotten more and more frightening.
Last night I saw my chalk-white pale skin; my grey chapped lips and my heavy teary eyes. The veins in my face looked ripped and bruised. My skin was so dry that it seemed translucent. My ribs could be seen plainly through my chest, even without me sucking in. Somehow the oxygen tubes seemed to have taken up my entire face—overpowering all of my features.
Dear Nobody,
Geoff visited me in the hospital today. I looked at him as if it were the first time I had ever seen him—though I knew it’d be the last. It was raining, but we still went for a walk. The cold was crisp and refreshing to my body; it caused a bearable pain in my joints that reminded me to be grateful that they still even work. Geoff was walking next to me—absentmindedly and aloof. Maybe that’s the reason I love him; he always seems so distant, so dreamy. I never ask what it is he’s got on his mind—instead I try to imagine it in my own. Undiscovered planets? Mystical worlds? Me being gone? It doesn’t bother me that these worlds of his sometimes take him away from me for a while—I just hope that eventually he takes me with him.
We walked outside on the grounds around the hospital and then I had to go back in again. Back to the hell that had been so wrongly apportioned me. I asked him to come inside and sit with me for a while—while I got my treatment. I pleaded. But he said no.
I laughed the first time I heard I him say that he couldn’t bear hospitals—just like everyone else he doesn’t know what the word hospital really means.
In the hospital, we wear our IV scabs and scars like they are badges of bravery. We flaunt our paleness as one would flaunt beauty. In the hospital, each coughing fit is like a dutiful performance by the orchestra of viruses in our lungs—and we are obligated to do encores. Our frailness and weakness are signs of beauty—and suffering. In the hospital the machines and IV poles that you wheel along are like the status symbols the popular girls in high school wear around their necks.
In the hospital—the closer to death you are—the closer you are to sainthood.
Dear Nobody,
Geoff called me tonight and broke up with me. He said he couldn’t take it.
I hate him.
I want to find the sharpest, biggest knife and stab him in the face.
Dear Nobody,
Love is the creator of hate and the daughter of disappointment, as no two people could hurt each other more than two people in love. Don’t put too much LOVE into love. Love is a whore to poets, musicians, songwriters, and artists; they use it as fodder to sell their frustrations and personal impotence—and love is TOO BIG a responsibility. No human can live up to the capacity of love’s expectations. A person will build you up so high, but once you are elevated, it’s all the harder when you both fall. You become something to that person which is impossible to live up to. Love has power, not the lovers.
Dear Nobody,
Oh well, Geoff was a great distraction—while it lasted.
Dear Geoff,
Very late at night, when I can't sleep, and feel kind of lonely, I think of you. I remember about you, what you look like, what you feel and sound like. I remember interludes when we were together—and then it happens—I start to miss you in a painful way, and then I want for you to be mine again.
Then I soon realize that you are mine. I have you, trapped in my mind, until I decide to forget you. In my mind, I can see you whenever I want, staring or smiling at me. In my mind, I can make you laugh whenever I want, simply by recalling times that you did when we were together. I can feel the care and concern you showed me once, at a time I thought could never end; just by remembering.
If memories are all I'll have, I will still be thankful. In my memories I can distort you, and change or filter you to my perfection. Your touch is absent, but in my mind I can feel you everywhere, all around me. I close my eyes, enjoying the dark solitude, wishing that hope can be enough to force a memory of me to your mind.
Are you lonely? Am I in your dreams and constant thoughts? Do you hear a song—a sad one—and think of me?
I've got you trapped in my mind, but I know you are really gone.
But for now, I think I'll just hold this key in my hand, and only let you out every once in a while, and as long as my memories are vibrant, you are always mine.
Love forever,
XOXOXOXO
Mary Rose
Dear Nobody,
I hate it in the hospital. I don’t have any dignity in here—AT ALL. People just walk into my room whenever they want to. Shit, I’m lucky if they KNOCK. Nurses tell me to piss in a bowl, so they can save it for the doctors—or they tell me to shit in a bowl. Doctors stick their hands up my shirt. They ask me about my period—and if I’m sexually active. They tell me what and when to eat. They tell me to take deep breaths and give me fresh needles. Thank God I go home soon.
Dear Geoff,
you're a loser and a dickhead fag asshole.
There is no life after Mary Rose.
you'll be sorry babe.
Goodbye.
Dear Nobody,
I get out of the hospital tomorrow! Weeeee! I’m gonna take care of myself this time. No more drugs, no more drinking. I’m gonna make sure I never have to come back into this hell-hole ever again. I have a new perspective. I want to make real friends, have a real boyfriend and start over. I want to be well enough that I can start taking dance classes again and maybe move to New York. I want to become a famous dancer and get a rich boyfriend with a loft apartment and a white dog.
I think I can REALLY DO IT this time!
PHOENIXVILLE, PA
WINTER, 1999
Dear Nobody,
Wow! Three days out of the hospital and I’m already in love. His name is Jamie and he is absolutely perfect for me! Just one kiss from him got me higher than any bag of dope! (Cheaper, too). We met at the mall yesterday and he asked me for a cigarette. I said I didn’t have one and he said that was cool, like he thought I wasn’t putting on a front or something. We hung out all day. I shoplifted a CD from the Virgin store and gave it to him. I think that really impressed him. And then we went to the movies. Before my mom came to pick me up, he kissed me and asked for my number.
I really like him! I care about him a lot too. He’s friendly, outgoing and physically he’s so beautiful. I just knew it’d happen if I were patient—if I wanted it badly enough. I knew I’d meet my perfect guy. He’s very sweet, but like most boys, a tad elusive. I haven’t liked a guy this much for a very long time. I mean, he’s not exactly poetry material (not yet, anyway) but I feel good about myself when I’m around h
im.
I met his friends yesterday and they are all older than I am. So I played the naïve youngster around them—partly to be taken under their wing and partly to be babied—and partly because I really DO need them to explain or direct me in some matters.
This girl I met a while ago knows him. They dated once—like a million years ago. She mentioned that he was a good guy, and that when they dated, he treated her like gold. I trust her, and I trust him, and my intuitions are rarely wrong (at least when my emotions are involved). I hope he understands that I wish only to offer him a pure “like” (not love, not now, it’s WAY too soon). I told him that I’ve got a huge crush on him, and he said the same about me. Gosh, I like him so much; it kind of surprises me. Oh, he’s so cute! I want to take things slowly because I want this to work out.
I think that there could be some major potential here. As long as I remember my social graces, and keep up my end of our relationships blueprints, things should be okay.
Man, I’m crushing on him so hard—and I love every minute of it! And that’s the way a meaningful relationship should be!
Dear Nobody,
Okay, now this guy Jamie is starting to tell me that he really likes me, that I’m different, and that he “cares” about me. I guess I really like him too, but I know how feelings can be—especially with guys—so I’m trying to distinguish the difference between his real feelings and his charm. I just really like him, and I want to believe him, but my self-protectiveness is admonishing me every time I want to gush over him in admiration. Maybe he does really feel this way? I don’t want to be stupid and go ruining this by not believing him, or worrying too much if he’s for real.
But what if he’s really NOT for real?
Oh, to be sure. These things take time.
Dear Nobody,
I had to cancel my date with Jamie today because I got sick again. Will this world ever give me a break? I’m taking care of myself okay—I’ve met a boy I like and I have a few good friends. Why can’t this last awhile? Why can’t God let me have my cake and eat it too—instead of always holding everything at arms length? I just have to be honest with myself. I will never be the happy, healthy girl with the nice boyfriend and the perfect home. It’s not in the cards for me.
This is my reality: this morning—just like so many other mornings—I awake to the bitter veneration of nauseating medicine as the taste of a “treatment” fills my mouth and lungs. A loud angry machine squeezes my chest as it pounds, pushes and vibrates my lungs—every morning of every day, only minutes after I wake up.
This is my reality: I live in hospitals, not homes. My own body, the temple of my soul, is my worst enemy. I live within it every painful moment of my life. I am held captive by its destructive viruses, deteriorating bacteria, and excruciating disease.
This is my reality: Vicious day in, and vicious day out, this is my fate. Coughing up blood from my lungs while I choke on sticky, painful plugs of fatal bacteria-infected mucus.
Every day of my depraved life, I am chastised for being still half-alive.
That is my reality.
Dear Nobody,
After I’m in the hospital for a while I start to feel really ugly. I mean, I know when you’re sick you’re not supposed to be like all alluring with oxygen prongs in your nose and tangled hair that you’re too sick to brush and a swollen face from steroids—but still.
Know how on talk shows and shit all those psychiatrists talk about how adolescent girls feel self-conscious because they’re not used to all the changes their bodies are going through yet? I guess I feel like that with my weight. When I’m not sick, I usually weigh 108 pounds, and when I’m sick around 97. Right now I weigh 101. It’s hard to imagine 108 as my normal weight after spending weeks inside my 97 pound body. And after a while of being 108, it’s hard to imagine myself as 97. My weight just changes so much so fast. When I had the temporary diabetes I lost almost ten pounds in eight days, and once I gained seven pounds overnight. Now, I’m supposed to have my weight up as high as I can and eat as much as I can.
I don’t know, it’s weird not having a definite body size or shape. I like to wear dresses, but when I buy a dress it may be too small or too big a week later. I usually end up buying non-fitted skirts, because they’re easier to wear with different sizes than dresses—even though one day they will just fit, then the next month go down to my knees or calves.
But that probably bothers me the least of anything…
Dear Nobody,
I’m getting out of the hospital today. They told me if I continue drinking and doing drugs I would cut my life expectancy in half. The doctor told me that if I preserve myself long enough I’d live to be thirty five—maybe even forty. I could even stay healthy until a cure is found; which everyone says is going to be really soon. But I’ve been hearing that since I was seven years old.
And guess what?
I’m losing patience.
The doctor put me on bed rest for three days and upped my medication. I’m not getting much better, but my condition has stabilized. I don’t care either way; I just want to be home.
Dear Nobody,
I’m getting kind of old now. I’m not ready to be eighteen. I’m not even ready for seventeen or sixteen. I don’t feel or seem any older than fifteen. Maybe they’re other reasons for it, but I don’t know. I feel like I’ve always had to grow up so much faster than I wanted to. I held on to childhood as long as I could. Maybe adolescence will be the same. Could that be dangerous to me—counterproductive?
I don’t know. Who can say about the future?
Who cares?
All I want is security. I just need to be sure that I’ll be okay.
I think it must be this town. I hate it. That’s not a good attitude to have, but it’s true. Besides, it COULD MAYBE be dangerous to like such a shitty town. I’d have to lower my standard of happiness to be happy around here.
I guess I’ve really got no place else to go. So I leave mentally. I’m becoming a pretty good dreamer—a shiftless lay about. It’s really not so bad. There’s lots of freedom—even if freedom is just another word for nothing left to lose. I’ve got peace—and that’s what I need right now—(besides sleep)—so GOODNIGHT!
WINTER, 1999
Dear Nobody,
I knew long before it happened—that I would have to go into the hospital again. I had been sick for weeks and I wasn’t getting any better—I was just getting worse and worse. I could really feel it this time; it took so much energy to even sit up. If I took a shower, I’d have to sit down to catch my breath. Everything I did reminded me that I was dying. Piles of tissues filled with green-brown bloody mucus covered my bed and the floor by the couch. In my room, if I couldn’t find any tissues or clothing to use—I would just spit it out on the floor. My mom thought it was really disgusting, but I didn’t care. When you wake up at four in the morning choking on horrible tasting shit, I don’t care where it goes as long as it’s out of my body.
This most recent hospitalization was one of the most painful episodes. I thought I was going to die this time—I was sure of it. It will be the sixth time this year that I’ve had to be admitted. My mother and I drove to Philly in silence.
After being admitted, I tried to fall asleep—even though I wasn’t sure if I’d ever wake up. I wanted my mother to be aware of what was happening but I also just wanted to be alone. It was weird—I wasn’t scared at all. Even though I was in pain and exhausted, I felt like, I don’t know—content?
I just lay there, waiting. I didn’t pray to live or die. I didn’t try to barter with God the way I usually do, promising to stop using drugs and abusing my body. I knew it wouldn’t work—and I didn’t want to die a liar. I was really just praying to thank God and everyone for the life I’d had.
I turned on the Religion Channel and listened to a group of people praying. I couldn’t talk, but I sai
d the prayers in my head, mostly Hail Mary’s and the Our Father prayer. I tried to whisper the bedtime prayer I used to say to myself when I was little: “Now I lay me down to sleep, I pray the Lord my Soul to keep, and if I die before I wake, I pray the lord my soul to take.”
It felt like someone else was in the room with me then—more than the machines beeping and oxygen hissing—I just felt like other people were there. I thought of the other people I knew with Cystic Fibrosis and prayed some more. Now I know how they felt when they were dying…
>
Dear Nobody,
You can learn a lot about life while being surrounded by death. I’m kept up almost every night by my roommate’s excruciating screams of pain. Some of these children’s screams can wake you from a deep sleep—but others, like my roommate—have enough vigor inside them to put the fear of God into you. Maybe it’s just knowing how it feels to be the one screaming, and then having to listen to someone else being put through the same thing? It’s not that I’m scared she is dying. I know that when you’re in the very WORST pain, you can’t even scream out.
Earlier today when I was asleep—nodding out from the morphine—my roommate went into convulsions. I woke up from the sound of her bed shaking and rang for the nurse. Later that day, my roommate’s mom came in to visit her and brought her younger brother and sister. They looked about eight or nine years old. They were sitting around her bed talking. I saw her lean forward to grab something, when suddenly she shot straight up into the air and her eyes rolled back. Her tongue was sticking out and wagging from side to side. One rail on the side of her bed was up, and I thought she’d bump her head on it or something.
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