One Year

One year ago today, my parents flew across the country to find me in the ICU, fighting a systemic fungal infection and DKA. It was terrifying for both them and me. 

In the year since, I have lost and regained my strength a handful of times. I have felt, oftentimes simultaneously, great joy and great sadness. I have suffered and I have lived with pain. It has been the hardest year, the scariest year, the saddest and best year. 

Some days I work so hard so I never have to fight like that again; some days I lie in bed and let myself sink into the weight of it all. But more and more, I look forward and I do not fear. I give into suffering less even as my pain increases and my anxiety beats a wild hummingbird song inside me. 

I must go on; I want nothing more than blue skies and kisses from my girls, and trips with my friends, text messages with my cousins, love from everyone and all of you. I write now. I exist. I keep on. 

And while today marks a significant date in my medical history, I look toward the life I have built in spite of it, and I thank everyone who has helped me stand back up. Into the light we go.


Tooth & Beauty

Three weeks ago I had my bottom teeth removed. Many have asked me why and so I will try to explain in a way that doesn’t make me look like a foul-mouthed freak (I prefer to make that impression on my own with colorful language and horrifying jokes).
One of the main components to treating lupus is the use of corticosteroids. Steroids are terrible for you, long-term. I actually wrote a bit about it for The Daily Beast a few years ago, but basically: they wreck your body while also saving it at the same time. Sound confusing? It shouldn’t because that’s what modern medicine is: a bunch of give and take, push and pull, metaphors and compromises and hopes that the outcome justifies the means. I don’t know if it has for me, yet. I am alive, though, so that’s good.
Unfortunately, I am also mostly toothless. One thing that steroids do is weaken your bones. I'm seriously Bird Bones from Playing House (watch that show, you clowns.) And teeth are bone! So they began to break away and because I have all those sexy diseases, I started to develop infections that wouldn’t heal and I ended up swollen and hospitalized. It became painfully aware that the safe thing to do would be to remove all my teeth.
Last January, before I went to California for 4 months, I had my top teeth removed. It was hellish. I bled like crazy and developed sores and ulcers over the open sockets. It was bloody, ugly, colorful. Two weeks after seven top teeth were removed, I was on the plane to California, clutching an ice pack and a bottle of Vicodin.
I have stretched and reshaped my smile so many times over the past two years; I tried to make myself smaller, my loud mouth quieter. A difficult task. And to be in a lot of social events where I’d need, you know, teeth, was wrenching. I couldn’t speak freely or comfortably. I had so much to say and yet I was alienated, left out, hiding to go play with the kids who wouldn't notice how lame I'd become without teeth. 
It was always on my mind; my scarred, deviated smile. And eating out, or eating at all, was a bust. (I have survived on smoothies and oatmeal alone.)
Over the summer, as I lost pretty much my entire health and woke up with completely degenerated muscles and spent time in a rehab hospital and had to learn to eat and walk and use the bathroom on my own again, my bottom teeth started to chip away. They cut the inside of my mouth. They were jagged and unfriendly to any visitors. (SORRY ABOUT THAT.) I was obsessive in my notice of the defect, but I was later told by the girl I dated for months that she hadn’t even noticed. I had gotten so damn good at hiding but I wasn’t any better and neither were the teeth. They had to come out.
But first I had to travel a little bit and write and be hospitalized for more scary infections and basically scare the shit out of everyone. In early May, I was finally medically cleared for the oral surgery. And so I was sedated with the IV Valium and nitrous and the rest of my teeth were cleanly removed by someone I later realized I had grown up a block away from in Lincroft.
Now it’s been 3 weeks and Dr. Gelband told me that while I’m healing two to 3 times slower than the average patient, I am good! I don’t even have to go back to Dr. G and tell him about our childhood connection and mutual Facebook friends and then apologize for creeping him out. (I KNEW I recognized him so I had to Google that shit.) On Friday, I’ll receive my lower dentures and the whole affair will be mercifully closed.
I have been hesitant to talk openly about this. One, it feels incredibly personal and painful, and that’s because it is. Mentally and physically, this is some of the most terrible pain I have been through. The process--from working on the teeth at NYU three years ago, to deciding to remove some, and then others, and then all-- felt infinite. And at a time in my life where I was growing into who I was and learning how I wanted to present myself to the world, I had to hide my mouth behind my hands and nod.
And frankly, it is embarrassing, no matter how I spin it in my mind. It makes me feel like I am going to be single and toothless forever and that no one will ever love me because I am toothless. These thoughts are ridiculous. If I end up alone, it will surely be to the stupid jokes I make or for poisoning my spouse’s family with salmonella in a rare and dangerous attempt to be domestic. In the grand scheme of things, teeth, or lack therof, are pretty low on what I look for in a person, in a mate. I want humor and ambition and creativity and smarts, most of all. I can deal with fake teeth and other baggage once I’ve checked for the more important stuff.
The thing is we all age. We all succumb to the horrors of our bodily decay. I have known this horror since I was one year old. And in recent years it has gotten so much worse, and so much more terrifying. And sometimes I don’t want to do it, and sometimes I can’t talk about it, and that only makes me feel worse.
But I am not ashamed of myself, or my body. I am strong. I have fought off things people don’t usually survive and while my smile may be gummier (actually, it’ll look better than ever), I am buoyed by the wonderful things in my life. Sometimes I’m even inspired by myself, because in the midst of the bloody gauze and the deep shame, I found humor every day. I found strength and love and I grasped onto it and I did not let go.
My teeth are goners. But my smile will never go away.
Thank you for all your love and support--the books, the care packages, the notes and cards and text messages. I hear a lot about how terrible and tough my life is and sometimes I believe it and then I remember that people love me and I love them and I have the cutest fucking nieces in the world and I know I will be okay.