Dear Nobody (12 page)

Dear Nobody,

My real dad came to visit me in the hospital. He's in Reading, but he doesn't want me to tell anyone that he's here, because then he'll have to pay more child support.

Once when I was eleven, he tried to get to know me long enough until he convinced my mom to drop charges on child support for me. He gave me some song and dance about getting a new job close to our house and how it would allow him to be more of a “dad” and buy us presents and stuff. After my mom dropped the charges—I didn't see him for two years. Then, the next time I saw him, we had a sort of a “falling out.”

And here I am fifteen years old—keeping a secret so he doesn't have to pay support.
I'm so stupid.
And he asked me if I wanted to move in with him when I got out—so HE can get child support from my mom! That's just bullshit. But I still put up with it—I don't really know what to do.

I just don't need him in my life right now—although I'm so desperate for company, I should count my blessings that I, at least, got a visitor.

Dad is scared I'll get drunk, and tell my mom that he's here.

I should just fucking tell her anyway.

Dear Nobody,

I've been home from the hospital for a week, and I just finished reading letters from people I used to know and love, and looking over some old pictures. Then, to make things even worse, I found a tape of myself talking to three or four old friends of mine from Reading.

I sounded so different then, like another person, with another soul. I was talking, I was laughing, I was HAPPY. It was weird—to hear all of those old voices, to see photos of all those old familiar faces. Back then I seemed so carefree, and I was. I had so many good stories, a new one for every day of the week. Life was so great then, compared to now. It seemed like I actually HAD
FUN
. Now it seems like I just have a GOOD time, not exactly a FUN time.

I really, really, really miss FUN.

When will I start having FUN again?

Dear Nobody,

My friend from the hospital died today. Her name was Jennifer—and like me, she had Cystic Fibrosis, too. Jennifer looked just as healthy as me. Our chronic cough was even the same (when I was coughing up blood). We looked the same—we both looked exceptionally healthy. Who's next? Which one of us?

Jennifer is not my first friend who has died. Tiffany was eleven when she died. Jennifer was thirteen. Heidi died before I even got to know her. Sarah is practically dead, but not yet. What about the rest of us? When do we die? We're getting old for our age. Sarah is seventeen at the end of October. She's in her old age. Timmy is seventeen. He's in his old age. Jess and Tiffany never got theirs. My old age. What is it?

Maybe Jennifer died instead of me?

After someone is dead and gone—especially someone so young, and beautiful—what I am supposed to feel—is not exactly what I do feel. When I had first heard Jennifer had died, I was in shock. I admired her beauty, her humor, and her intelligence. She had only been thirteen. I felt so many different ways all at once. I didn't know if I felt guilty to be alive, or happy that it wasn't me. I can picture her sitting right across from me—eight feet apart—which was the rule at the hospital—so that we didn't make each other sicker. We would smile at each other in between wheezes, gasps and coughs. Jennifer had befriended me. Talking with her was like having a conversation with myself; that's how alike we were.

Now, when I think of Jennifer, I picture her in a coffin. I see her big, caring eyes—sewn shut. I see her in a white dress, a very pretty one, and her arms crossed over her chest. I see the shiny gloss in her dark straight brown hair illuminated by the fluorescent lights we once sat under. But Jennifer seemed so ALIVE. It's hard to think of her body rotting in coffin. She was rotting when she was alive. So am I. We have been rotting from the time of conception. Disease, infection, swallowed her from inside out. But we are more than just a disease, we have souls. Jennifer had a soul. I wonder where it is?

I hope that her soul can read this.

Dear Jennifer, Tiffany and Heidi—and all the other angels taken too soon by Cystic Fibrosis,

You are all with me every minute of every hour of everyday. Every minute without you is a minute without air, gravity and life. You are rarely absent from my mind, and if ever you are absent, for the briefest moment, my mind drains into a pit of loneliness and torture.

No misery is as haunting and ravaging as your absence. You are so much more than my security and protection from this evasive earth. We exist in a place other than this disgraceful world of maddening confusion and tenacious hatred. We've got our own heaven that awaits us. We can only enter into it through our arm's perennial embrace of one other. Yet this dark world has sealed our only true home off from us. At least you and I know our way home. You have gone to our heaven first.

Will you wait for me? Will you shine for me up there as brilliantly as you shone for me on earth? I will look for you when I get there. I will look for your burning porch light that will guide me home.

Rest in Peace.

Dear Nobody,

I am seventeen. I'm OLD. I'm old. I look great for my age. Very good. I am living my old age. When you were sixteen, how many of your friends did you watch die? Did you know maybe one person that died? One friend? Guess what? I could count my dead friends on my hands. Guess how it feels to have all of your friends being wiped out and slowly dying off by the same Cystic Fibrosis I have?

God never intended this hurt for me. Please, please what did I ever do? Help me. Help them. Help us. Help us, we're in hell! No one can save us. Not our machines even. Not our pills. Not even all our endless, lonely hospital nights.

Help us.

Why are you healthy and all of us dying?

Dear Nobody,

Jennifer's death brought up issues I can't handle—I JUST CAN'T DO THIS ANYMORE. Sometimes it hits me—something like this will trigger it and I will become scared to death. I still cannot believe that I could be cursed with such a horror; to everyone else, this is all second-person. I feel my limitations—my mortality. I will never know what it's like to be old, to have children, to be married. Just like Jennifer, I'll be dead soon. The average life expectancy for my type of disease is thirty two years old—and that's if you take care of yourself, which I never do.

If I were being chased by a murderer with an axe, a knife, a gun, bare hands, whatever—I could run, I could fight back, and I could call for help. Now, imagine the panic and fear you would feel in that situation. For that second—those few minutes; imagine having that fear all the time, not being able to get away from it; never being able to escape it.

With Cystic Fibrosis it's different. You cannot run from Cystic Fibrosis. Fighting back at Cystic Fibrosis with treatments and hospitalizations is all-consuming—and in most cases—futile. If you can take the treatment tube out of your mouth long enough to call for help, the only ones who can hear you are either too ill to respond, or already dead. Besides, doctors and nurses and social workers separate us freaks from each other (they SAY it's for our own best interest).

Oh shit. How can I keep on doing this? This IV in my arm, the pills in my mouth, the mist in my eyes—this ache in my body? How can I do it any longer?

Yesterday on TV somebody said, “How can you fall in love with somebody that's got one foot in the grave?”

Who will want me?

Who will love me?

Dear Nobody,

My whole life, while other kids were trying to memorize frivolous things like codes to video games, or their time tables—I was trying to remember how many cubic centimeters per syringe to draw up and from which solution.

While other kids were learning how to play basketball or football, I was learning that if you mix Resulin with insulin and then hang upside down while getting pounded on it worked better to loosen the mucus. Strangers in uniforms would come and hang me upside down to help drainage, and pound me for an hour—four times a day—until it hurt to inhale. The harder the person hit me, the better the chances of me coughing were. And coughing is my greatest defense against this disease. And coughing was hell. My muscles and ribcage would hurt for weeks afterwards, and I often got headaches from being upside down.

I remember once telling one of those strangers that they were hitting me too hard, and they told me to stop whining.

So when other kids were getting snuggled by their parents, I was getting beat by some stranger, while my parents were miles away. I could never explain with just words how I feel about that, but it hurts. Back then, I wondered what I did to deserve this? Now I just wince and accept it.

Dear Nobody,

The first time I went into the hospital felt like my funeral. People sent flowers, prayed and visited; but over the years it seems that no one visits or sends flowers or cards. The last time I was in the hospital, the only get well card I got was from my school bus driver. My aunts, uncles, friends—anyone I thought cared for me—did not do so much as call. So I was pretty sad to say that the only get well card was from my bus driver. And I appreciated it greatly, knowing her concern and get-well tidings would soon fade.

I guess it's easy to forget the dead as time goes by. But I am not dead; this mind still THINKS, and these feelings still FEEL.

Dear Nobody,

Cause you've hung me upside down

Now I've lost my princess crown

But just ignore me if I start to cry

Cause if you don't, I'll probably die.

Dear Nobody,

I remember once when I was in the hospital—I was like twelve or thirteen—and there was this younger “CF” boy named Timmy on my floor. We talked about a lot of things together; from chest Physical Therapy—to PICC lines—to people making fun of us for coughing. One night, after taking all of our laxatives, foul-tasting syrups, antacids and pills, we ordered food from some pizza place. We got a large pizza and cheese fries. I borrowed some of his enzymes before we ate, and together we finished the entire order! Afterwards, both of our stomachs got extremely big; too big for our underweight bodies. Then we talked about that. Then more things about CF. It was sad, and later I cried for him, and then for myself. But I felt a little better; a little less like a freak.

Dear Nobody,

Today some guy at the gas station asked me if I was losing my voice, I said, “No.” So then he called me a FREAK!

Why?

Because I notice the little pleasantries that are normally overlooked? Because of my interest in literature? Because of my physical imperfections? I am tired of having no one else around like me—and I'm tired of being called a FREAK!

Dear Nobody,

Tonight I'm going to talk about what a FREAK I am.

People call me that all the time.

Mary Rose is a FREAK.

Whenever someone calls me that I think,
if only they knew.

Someone called me that yesterday and for the first time, after years of being called it, I finally FELT it. The words finally affected me. I was at home doing my treatments and as I was sinking the needle into my arm I wasn't thinking about the pain, or how I have to take twenty pills after this and then give myself another shot—instead I was thinking… freak? FREAK?

I could show them a real fucking freak, if that's what they want. I could hold out my arms and show them my scarred, torn veins from the many PICC lines and needles that have been in me. I could point out the big scars—the long, thick marks the IVs make when they fall out of your arm. They could just look at my hands closely and see how FREAKY I really am. Instead of judging me on my hair or my clothes. Instead of whispering to each other about my thin body and my bony face. Instead of flipping their eyelids up in judgment when they see my black nail polish and skull rings. Instead of looking just past me, beyond me at something in their hindsight, they could look at me, INTO me and see something REALLY worth talking about.

They could talk about my little white scars and all the red marks, scabs and bruises that I have on both hands. They could point out the big fat vein—the one on my left hand—the one that is so scarred and ruined that it sticks-out like a tendon on a thirty-two pound anorexic. Maybe if they looked at my fingertips, they'd notice the little red and white scars all over the tips, and they could whisper about THAT. Maybe they'd see the blood blisters, or the way my fingers quiver when it's cold; or get hot because of nerve damage.

They could REALLY get into how FREAKY I am if they looked at my legs closely and noticed how one is a little bit longer than the other, because my hip started to fall apart and dislocate when I was ten (on its very own, how fucking freaky is that?!?) Maybe me and those fucking assholes can take a little trip back in time—and they could see me when my joints were so fucked up that I had to be in a wheelchair for two months.

Maybe I could invite them into my house at around eight at night and they could see me swallow my twenty-five enzyme capsule pills all at once. Yes. I can swallow TWENTY-FIVE medium sized pills at once, without any water. And I've been able to do it since I was nine years old. How many people do you know who can do that? Hmmm? Guess that would
MAKE
ME
A
FREAK, huh?

Maybe I could just show them my counter full of medicine—THIRTEEN different varieties—that are ALL for me. Then I could show them the basement with its boxes full of more medicine for me. Oh wait, what's in that fridge there? More medicine for Mary Rose?

“Gee, like, oh-my-God, that's A LOT of medicine.”

Then maybe they could put a math test in front of me and see how well I do on it, because, at the moment, I wouldn't do very well at any test. “Mary Rose must be stupid,” they would think, looking at my low test scores. Well, maybe you would be stupid too if you hadn't been well enough to attend a full school-year since you were in second grade. I missed weeks—months even, because of my illness. How come I'm not as bright as my classmates? Gee, THEY all seem to know what they're doing. But me? What am I doing? I don't know what I'm doing—maybe my brain is not clear because I'm too busy concentrating on the tiny fact I'm dying from an illness that I didn't ask for, or deserve.

Oh-my-God, you're right!
I
AM
A
FREAK!
Guess that makes me different.

Okay wait, what if I could take them into my living room and show them the three big, loud machines that “keep me breathing”?

Do you have big loud machines in your living room that keep you breathing?

No? Didn't think so.

Oh, wait, I've got them! How about if next time I sweat I show them how salt crystals form on my skin? REAL salt crystals, that in the sun look like glitter all over me. Or I could let them check my blood sugar. Maybe it'd be 600. Would yours?

Wait, I know how I could show them freak—I could eat something, wait a few minutes, and let them see what happens to my stomach—let them see how big it gets. Maybe they'd think I'm just pregnant, but I'd tell them the truth. I'd tell them it was because
I can't digest my food.
Nope, my stomach won't digest my food. How about your stomach? Will it digest your food for you?

Or I could let those bastards listen to me choke on my coughs. I mean REAL coughs—ones that hurt. Ones that hurt right before they come, and even more afterwards. Ones that make you think you'll never breathe again. Yeah, do you think then, they'd really think I'm just a little more of a freak than they thought I was?

I could even cut myself open and try to show them my gene mutations. That's right. Mutations.

As
in
MUTANT.