this is just how it is.

last week i was tripping all over the wires and wednesday i broke free, out of that small, crowded room with a screaming roommate and a pain so visceral i cringed.

the middle of it all is okay because i don't have a choice but to live it. it is now, afterward, when i can do nothing else but remember it.

everything i understood left me when i took out my IV and discharged myself.

what remains is a blank space where all the things i can do, wanted to do, have disappeared.

when i came home, the phone was ringing off the hook. the screen was filled with one, two, three four text messages.

a stranger asks how i am feeling and i can talk to them. i spit scientific facts, details, banalities.

i know what to say to them. i am just a name on a chart.

but to the ones i love, i send out the mass text messages and forget to return calls.

i hibernate, because i don't want to explain why instead of feeling better, i feel worse.

i am grateful for this flood of support, for all the ears straining to hear my complaints, for all those whose arms are outstretched, just waiting to help.

but i don't want to be like this anymore.

i would like to walk ten miles and only complain about two.

i want to understand more than just the prick of the needle, the instantaneous pain.

i want to know what happens after.

i took out my IV myself, so why can't i do more?

all i know is this: i want to go home.

with that hand on my back, with the curtains drawn.

no expectation. no explanation.

no need to do anything at all except sleep,




Wednesday Morning Incoherencies

I'm starting to think NYU had it wrong when they designed this hospital. The building is huge but each room is tiny and each day here feels like a WEEK.

My parents arrived in the morning after rounds. They crowded into my half of the room for only minutes before the space dissolved and my dad took the paper to the waiting room. He also stepped out to get me a computer charger, as I believed death would become me if I didn't have Twitter to check. My mom fetched me Gatorade and actually tried to change my shirt for me before I reminded her that I’m 24, not 3. They stayed for most of the day until I got cranky and told them to go home.

I wasn't in the mood for visitors to due to the fact that I look like I got some "work" done down in South America, but I had Meghan come by anyway. She’s good company and she promised to bring Chinese food. We've been friends since before I discovered eyeliner and hair straighteners, so she's seen me in far, far uglier states. She stayed until I decided to try and go to sleep.

But sleep is impossible in the hospital so I listened to the attending doctor try to explain to a team of residents and medical students what was wrong with me. I listened for 5 minutes before I got bored and cranked up the music. Four songs later, the students and doctors came in and beckoned me to repeat "what happened this time" for the 30th time. (Here's an idea, guys: check the fucking chart! It mentions it hurts to talk.) I pulled a bit of Helen Keller move on them: I didn't say much, grumbled and made no eye contact. Rude, maybe, but it's no fun to have 10 nerdy med students staring at you when you know you look like Joan Rivers: the Prequel.

Later, my rheumatologist came by and said I’d probably in here until the end of the week. Before she left, she cocked her head to the side in sympathy and said: "Poor Kelly Bergin, I'd hate to be you!"

I get this comment a lot. That and: “You're always sick! God, I would never want your life!” I understand the sentiment behind both, but sometimes it sits me with me the wrong way and I never know how to respond.

I want to have a life that others want, too. I mean sure, I’m sick and my hair is badly dyed and I’m lying when I say I’m 5’2 but it’s not so bad, is it? Do you not see these blue eyes? These irises sparkle!

I'm livin' the dream here, people!

Anyway, I’m here until Thursday unless my elaborate bribery plan works on the attending. I keep refreshing the new Hanson music video for entertainment and downloading episodes of Six Feet Under on iTunes. (Well, I was until I realized it's not the best show to watch in the hospital...did you know people die on that show?). I just want to go home and back to sleep and eventually see the outside. There's only a short time period in which I can take advantage of the official Kelly Bergin Mouth Sore Weight Loss Plan™, and that period is the next week. Soon my appetite will come back, and boy do I have plans with some complex carbohydrates and some good food. (Yuca, Supper, Frankie's, Luke's Lobster--I am coming for you.)

UPDATE: I tricked the residents into letting me come home early, as long as I rested, took mad drugzzz and ate and drank. Thanks for all the well-wishes, offers to visit, flowers, phone calls and messages. I appreciate it all, I really do.


Tuesday, 7 AM

The screams echoing in this hallway remind me of how primal we become in pain.

I haven’t slept in 24 hours and I can’t, really. I try but then nurses come in and yank on the overhead light and stick me with needles and I can’t do anything but lie here. They took me for a CAT scan at 3 AM and the bright, fluorescent lights of the hospital basement are burned on the inside of my eyelids. I'm hungry and my thoughts float to chicken. I haven't eaten a lick of real food since Sunday evening. These IV bags full of suspiciously colored nutrients do not fill me up the way a KFC Double Down might.

It’s daylight now, and the sun is streaming through the windows and curtains.

I know I will fall asleep eventually and I know I’m exhausted because I’m obsessing over weird things, like where I’m going to get my haircut when I bust out of this joint. I decided in the bathroom mirror I need a cut and color, like immediately. (How have I been walking around with hair like this? Disaster!)

I am practicing yoga breaths and trying not to wonder why this is my fourth stay in less than a year.

My parents will be back in the city by noon and I have good, kind friends who will visit. I love them for it. But in the middle of the night, in the middle of this experience, I am alone. And at 5 am, I just think I want someone to put their hand on my back. I think I’d be able to sleep then. A big handprint on the small of my back.

Thinking about it both comforts me and makes me cry.

So instead of crying (because I don't do that) I will play my embarrassing lite music hospital playlist and try to sleep some more, to breathe in and out and ignore the sounds and smells of this experience.

Update: They just brought my food and it's various liquids designed to fill the belly of NO ONE. Seriously, are they kidding with this? Tea? Strawberry gelatin? IT'S NOT EVEN REAL JELL-O. I wonder if it's against hospital policy to barter small, useless items found in my purse for microwaved cafeteria eggs.


Ha. Of course I would.

I am live-blogging this latest hospital stay, because why wouldn’t I?

I got to my room just a little while ago.

I came from the ER, where I spent 8 hours among the sick and the not so sick. Some had bloodied fingers and rupturing appendices and one man walked in and said he was having a heart attack. One woman complained Vicodin made her feel weird. I leaned over and told her that was kind of the point.

I don’t think she cared for me, but I was cranky and it was really cold in there, as if they were preparing the patients for the frigid morgue, just a few flights below.

The nurses fussed with my veins and stuck me four times. I felt proud, like I owned my body. I knew where to go and knew what I was doing when I said “Not this vein, not that one, do this one, not that one!”

I lifted up my neck to show scars, little proofs of battles.

It really happened, I can tell.

Sometimes people tell me how brave I am and comment on how much I have been through. I don’t know how to react. These things are both a source of pride and a huge open wound.

I’m not always brave and I don’t handle things well all the time. It’s easy to be good in hospitals, in doctor’s offices. I make jokes and brush off whatever they are throwing at me.

I’m not so brave in real life. I complain and skip pills and am mean to my family.

I don’t know how to write about this without seeming like a plea for sympathy or attention. But it’s not. These diseases are just as big of a part of my life as my relationships, my work, my family. They are here and present and permanent.

Living with sickness is like everything else and then, suddenly it is not.

Right now I am an outlier among peers, the youngest on my floor but Thursday I’ll be back at work and maybe Friday, at the bar? I will fit this sickness in on my planner and I will work around it and I thank God I have the support that I do, from my friends and family and coworkers and even this Internet community.

Gotta go. It’s CAT scan time.

Coming to you live from 1742, this is Kelly Bergin, signing off.


Ew, Gross.

It starts small. A bit tongue. Lacerated lip.

Sometimes they begin as they were always meant to be, as an ulcer, not caused by the trauma of my ravenous overeating. (Nicky’s Vietnamese Sandwiches are not meant to be eaten slowly.) Oftentimes, it’s nothing at all. Just the lupus, or the Other Disease. My stress level hits the roof (see: this week) and I get sties in my eyes and sores in my mouth.

At the very beginning they hurt but aren’t too bothersome.

Eventually, though, they become crevices in my mouth, holes in my lip, gashes in my gum. A physical swell—a reaction— occurs with every wayward bite of food. Every spice is realized, everything is felt. I hold my hand over my mouth in pain and my eyes water. I brush my teeth and squeeze my fists against the sink as the toothpaste burns my mouth.

I try salt water to rinse them, mouthwash to cleanse them, baking soda to end them. I feel every breath as it skims through my mouth, down my esophaugus, into my lungs.

I quiet myself. Lay back.

In meetings I don’t say much, never do. I am patient and I speak when spoken to, when it is necessary.

I keep quiet.

They go away, after a week or two of pain and silence and yogurt and baby food. They go away and I forget about them until the Next Time.

And I appreciate the silence, the loss of expectation. I don’t overshare, talk over people. I listen and even though I want to respond, I can’t and don’t. I am still and present and it is good and healthy and nice. To stop only hearing what I want to respond to and instead hear what they are saying.

To listen, learn, reflect.

(And also eat delicious Gerber Dutch Apple baby food. Don't let me babysit if you have it in your house, it WILL be gone.)


Vote For This Chick

I dare you to watch Video #5 and not be charmed by this Kerry chick.

Seriously. Watch THE WHOLE THING OMG IT'S CUTE and vote here: http://www.ingridmichaelson.com/videocontest/vote/. It's so charming. I wish I was that charming. That's it, I'm making a video to get the focus of this blog back on me. BACK ON ME.

Anyway, vote.

Also I dare you not to fall in love with the hot guy who looks like Jesus!*

*= It's okay, I went to Catholic school.