Trust, Fear, Vulnerability, and A Very Long Post.

Today is Friday, or says the dry-erase board on my wall. Friday, July 9th, 2010.

Last Friday I was drinking a margarita with Lauren in Bryant Park.

I came home for the weekend. I had a great, great weekend. I have such proof of it; through stories and pictures and the lights of the sparklers I can still see when I blink.

The weekend, that weekend, my favorite weekend of the year will be known as the one that set me over, brought me to where I am now, a Friday night at the NYU Medical Center.

* * *

Lauren just left. She has offered to visit each and every time that I have been hospitalized, each and every time since we've known each other. That's five times in thirteen months. 

I do not like visitors because they have to see me, like this, all foreign and sick. (Also bra-less, unshowered...okay, well maybe that's not so foreign after all.)

I knew there'd be a camera (what's with that chick and her camera?) so I put on a little bit of makeup and a bra. I fell asleep though, before she came and I woke up to her chatting with my mom at the foot of my bed.

I had no idea where we were. I thought maybe on a cruise ship. The half of my room reminds me of a tiny Royal Caribbean ship. One chair, big windows, bed. Complete with a striking view of the rotting East River!

I was out of it. I was out of it because I've been on morphine for four days. I haven't slept at all.

Earlier, Christine--a coworker and friend, a trusted new member of the "you can visit me" circle--also stopped by; I was asleep and I looked up and there she was.

And again--I was confused. Where was I? I turned over. I tried to talk. Pain flooded my mouth.

I put the Magic in my mouth. (That's what Magic Johnson bitches' said!) I've been swishing with this disgusting combination of chemicals called the Magic Mouth Wash. It has lidocaine (like novacaine), and Maalox, and other words I can't pronounce. It's another drug, but a good one. When I put it in my mouth (that's what...), it feels good (that's what he...).

The morphine I take is lethal. The Xanax I swallow is dangerous. The Plaquenil can make me go blind.

But right now, my pain, confusion and lack of sleep are more dangerous.

How many nights have I spent typing for an answer, Googling cures? 

Wasn't it just Monday that I ran through the water park with Roarke and swam laps in the pool? That I felt whole, healthy, sun-kissed?

I can do better about my health. I hear it all the time from the loved ones who snatch beers out of my hands and give me a dirty look when I sneak a piece of bacon. I concede to their point--maybe I should stay in at all times, drink water and eat only the vegetables from the local farmer's market. But I have tried, tried harder than ever in the past few months to temper my diet, eat better, and drink much less. I cannot say that I have completely succeeded, but I can say that I have not failed. I have become a little more responsible, a little less stubborn.

But I cannot control this disease, whether I do stuff or not.

I am always missing or not missing something important.

* * *

This afternoon, a doctor walked in, talked with me. Said my primary rheumatologist would want to discuss options in her office next week. I asked what they could be, though Google had told me long ago-- weekly walk-in injections, minor forms of chemotherapy. Chemicals, chemicals, chemicals. So many syllables in these drugs, words I do not want to know how to express.

Every autoimmune disorder evokes the memory of suicide--the body tries to kill itself from the inside- out. Sometimes, it succeeds. For some, lupus is just joint pain and fatigue. My lupus was a piece of cake until I got cancer, lost my thyroid and chucked my wobbly body way off the track.

And late at night, I am mad about that. Why did that have to go wrong? I was not short on adversity (or height, for that matter). I have been sick and therefore different since I was ten months old.

The cancer wasn't necessary, but the cancer wasn't half as bad as the aftermath.

We are all wondering these things.

For me, lupus is now more than chest pain and mouth sores. Its impact has steadily grown to the point where steroids are always a yes. Scary drugs are given to calm my mouth. To pry open my jaw just a little bit more. To feed me. Shove ice down my throat.

This time, my pancreas was inflamed. My blood sugar shot up (high, high, high). My mouth did not want to change. I soaked my sheets in the break of a fever.


Why don't I feel afraid about what might happen next? I don't feel scared. I don't feel acceptance. I don't feel denial because I don't know what's going to happen next. I don't feel anything.

Those 5 Kübler-Ross stages of grief?

They are not permanent stages. They are denial one day, acceptance another. Anger is the scar I have in my foot from kicking in the glass door. Denial manifests itself in the shots I take at 3am, at some hipster bar in Brooklyn where they come free with a PBR. And acceptance is the peace I feel when i write something like this.

Each stage is as erratic as life. Nothing lasts forever. There is no permanence. 

* * *

Lauren took pictures of me while she was here. I wanted her to. She's a member now, of this little club. She said she didn't want to exploit me but it is important for me, for everyone to see what I look like in this state. Because this is real. Red-faced, make-up less, real.

I have spent more days in the hospital in the past year or so than I have in my entire life, total.

The memories are true, the charts attest. 

It is time to accept that much at least.


  1. Tammy (aka @hippiechick68)July 9, 2010 at 9:39 PM

    In so many ways, this is beautiful.

    You are a very talented writer. Poignant, irreverent, vulnerable and unafraid to speak the truth.

    Generous of spirit even when you are in such pain and discomfort.

    Thank you for letting me, a perfect stranger, into your room (if only virtually). Next time, there is a bucket of fried chicken for you.

    Sending healing vibes across the internets.

  2. This is a phenomenal post. Especially when you jump to Twenty Four and then jump back. Very powerful. I could totally see this (and the embedded 24) as the opening to a gripping memoir.

  3. I am honored to be a part of the circle. I love you.

  4. Touched beyond by your words here. Very raw and honest.

  5. Kelly,
    It's very stalkerish, I know. But I've been following you for a while (at least when your post announcements show up on my FB newsfeeed), and though I've known about the Lupus for some time, for some reason these last two posts really touched me. Enough, at least, to reach out and shed my anonymity to let you know that while I've always kept you in my mind and heart for recovery and health, that you are very much in my prayers, especially lately.

    Please know you are supported, because you are an excellent person (not to mention a fantastic writer). Keep fighting, kelly, because anyone who knows you at all knows enough to like you, and to support you.
    So, yeah. i'm pulling for you, hun. <3

  6. Simply amazing, but you should know that by now.

  7. Oh Kelly. This is wonderfully written and I'm grateful that you share this with us. I'll be thinking of you and sending good-day thoughts.

  8. This comment has been removed by the author.

  9. Eileen, stalk all you want. I just hope that you enjoy my writing. It's gratifying the responses I've received lately and I feel very lucky indeed.

    Thank you all for reading, linking, tweeting, commenting, and--mostly of all--caring.

  10. oh and thanks tess--i consider you my blog idol (yes, i have one, WHATEVER WE ALL DO) and i'm glad i made the good calls when it comes to oversharing :)

  11. Stunning, Kelly. Raw, beautiful, heart tightening and REAL.

    I love the words your heart speaks when you are healthy and vibrant, when you are sick, when you are broken. You know what's absolutely inspiring and shocking to me though? You spirit is always bright and you are always poignant and fluid! It's completely moving.

    I hope that the experts figure out how to make you BETTER so that you don't have to suffer any more. Even if the NYU docs are hot- they ain't THAT hot!

    Also... is the East River really rotting? I should research that since we LIVE on it.

  12. hahaha no, it's not rotting. it's an old joke that mobsters used to dump the bodies in the rivers.

    just don't like make a habit out of swimming in it.

    oh yeah, you guys have that indoor pool. i am so coming over to abuse that one day.

  13. God, lupus sucks. I don't think I've ever sworn in a comment box before, but, damn. I'm so mad at that disease. So that was my first thought. Then came this second thought; what raw beauty in your words. You can't make a bad situation good just by writing about it. But as you've proven, you can find peace in writing about it. And what another, maybe more timid person may be feeling, you've expressed. Thank you for sharing this, and for allowing me to be a virtual visitor to your hospital room. I won't snap any pictures, but I'll take with me a glimmer of a girl I'm sure glad to be getting to know.

  14. kelrox- you got the gift girl. I love the way you describe things ...get better asap! love you and miss you ,

  15. This made me cry a lot but I am a bit emotional lately, so don't flatter yourself. Just kidding, this is one of my favorite blogs of yours, def my favorite of the "sad" category. WELL shit my bastard dog has completely distracted me from what I was thinking....
    Point being this one is for the memoirs that I am going to co-edit/write with you so I can be rich with you off of your disease.

    I hope you break out of that place soon! Can I get in on seeing Lauren's pictures? Part of me doesn't want to see them but she is so damn talented that I want to.

  16. ugh that name was supposed to be "Biz rants about nothing because she was asked to comment"

  17. Wow...you write beautifully! So sorry you are having to go through this. Wishing you peace and comfort in the coming days! Sending healing vibes your way!

  18. I agree with Biz, this is one of my favorites of the "Sad" division. I love that your writing makes me laugh even as I hold back the tears. xoxo get out of there soon so you can have your Allie snuggles and laugh at Emma's one-liners.