Happy Birthday, Dad!

After my mom, sister and I take a walk, the baby naps in the Pack and Play upstairs in my sister’s childhood bedroom. I sneak away into my apartment over the garage. My sister is on the phone with her fiancee.

I kick and roll and beat on the comforter, I whine and moan and scream no no no. I pour Vaseline into my nose, my mouth, the Anbesol a coat for one gust at a time. I see there’s no choice: the roof my mouth pulsates so I take a Diaulidid. The sores in my mouth and nose bleed, bleed, bleed. They wrecked my pillow in Vegas the other night. I am so exhausted.

My mom texts to tell me it’s time to come back because we are eating for my father’s birthday. I cannot and do not eat but I sit at the table (I have always been made to for which I am glad.) Sadie cries. I pick her up and bring her downstairs, careful to walk slowly, careful not to fall.

We eat dinner and my father is happy, my parents back together, always in love (they have never stopped; there was just so much more than love). My mom is not drinking. I am slightly under the haze of the drugs.

We FaceTime my brother and tell my dad we bought a new canoe for the lake. My sister presents the flourless chocolate cake. I burst into tears accidentally because a piece of my dry lip falls off as I brushed my hand to my face. I get it together. We cheers. We sing. We adapt and adjust like we always have.

The baby is 6 months old and she waves and I love her, and them, and the way we could be perfect, even though I am always broken, I am always making them wish I could be okay.

This is how we have always been, me the oldest, the younger ones knowing how to handle my sickness. They are the closest thing to understanding it without having it. They are family. The best family. They are love.


First Descents

I'm in a bed in a lodge near Vail, Colorado. Next to me sleeps one of my fellow campers from First Descents (FD).

There were about 15 of us on that trip I took to the Outer Banks in June. We learned to surf. Our ages ranged from 21-38. There were more girls than boys. We kayaked and swam and at night played games and eventually we could talk about cancer, how it had ruined and invigorated us, how we were trying to live our new lives as survivors and patients. How to raise children and buy houses and live like our life expectancy hadn't been trimmed the day we were diagnosed.

We had an amazing week. It was special; we all felt it. A few months later, the organization (which is quite large and ran 50+ kayaking, surfing and climbing camps last year) announced our camp had won the Golden Paddle Award. Usually awarded to the highest individual fundraiser, our camp was the first collective recipient. First Descents believed we embodied the spirit, the connection and the dedication to the organization.

The award will be given out tomorrow night at the annual FD Gala. I've been tapped to accept the award on stage and ask the partygoers to remember Hardcore, our beautiful friend and fellow camper who died last week. I will also ask the gala to stop for a moment and remember the campers who have died from cancer.

Tonight, as we drove home from an FD-sponsored happy hour, I felt sunk, instead of buoyed by my fellow FD-ers who had been able to make the trip.

Although we text every day, physically witnessing friends who have become so close to me struggle in pain is awful, heart-wrenching and nauseating; I now have an inkling of how my friends and family have felt watching me. Knowing that some of these friends I've made will succumb to cancer before me guts me as well. These are people who I have known 10 months yet am closer with than friends i've had for years, for the simple reason that they understand. Simply, very simply: they have been there, and they understand.

When I met my friends at the gate in Denver today, we immediately started up laughing and joking, discussing painkillers and poop, and tearing up over the loss of Hardcore.

This community has changed me. It has changed my life and the lives of others for the better. And it has taught me loss. It will keep teaching me loss.

Tonight, as I looked around at sick friends at the bar, I cursed this fucking disease. And I remembered life isn't about big moments; it's about these connections and the hope they give us. It's about the small moments of love and connection that become so large when you look back on your life.

And that's what I'll say tomorrow night as I accept the award on behalf of my camp. FD is hope. FD is power. FD is love.


New published piece–check it out!



This Monday Sucked for Most of Us, Right?

Last night I fell asleep at 11 and woke at 12 to a phone call from one of my best friends. She called to tell me our friend from First Descents ("Cancer Camp") had passed away the night before. FUCK, I said. I have been saying Fuck all day.

I haven't cried, even though Hardcore (camp nickname, tradition at FD) came out to support me in Denver when I ran for Team FD. I haven't cried even though Hardcore sent me a care package with a necklace from Etsy not a month ago, when she knew she was dying. I haven't cried at all.

I went to my nanny job and ran around in the backyard as it hailed with the kids and the dog. We jumped on a trampoline and I played the drums. I didn't say Fuck in front of the kids but every text I got about hardcore's death made me feel the punch of that word even louder. I banged the snare drum, I crashed the cymbal with my stick until it was loud enough to make sense.

Matt texted me that Jason Molina had died and the misery started to add up. I drove home and blasted "Just Be Simple Again" and thought that he wrote songs with feeling, with feeling and how rare is that?

I've been laying on the floor for an hour, vomiting and sick. I leave for Denver Friday for the FD Ball, an event Hardcore was supposed to attend. And then instead of booking a flight back East, I booked a one way ticket to Las Vegas to hang out with Matt for a night. Then we'll drive to LA, where I have no place to stay, really.

 I am being careless. I have no money, I don't give a shit.

I can't tell if I'm desperately trying to grasp "living" in the way First Descents encourages us. (Please google them and learn about them, they are so vital to young adult cancer survivors).

I can't tell if i'm "out living it" or running the fuck away from something that cannot escaped. From the fear of losing more, to alcholism and to cancer. From the fear I'll relapse, too.

All the ones I love,
they are so precious.
They are so easily taken.



No Sleep Till...

(This was an email, like The Daily Lupus instead of The Daily Rumpus or something, but only to one person and now I suppose it's to all of you.)

Good morning! Happy Spring Forward!

I'm excited about this but I haven't been able to sleep in days. Yesterday everyone was over for my niece's christening, 60 people nicely asking how I am. And I'm cranky (actually, I'm crangry, a word I invented that means cranky, angry and hungry), but I'm trying to be okay so I say "so tired" because I'm too tired to lie and say that I'm not, so everyone starts to tell me how my sleep patterns are JUST like a new parents. You know, the kid's up every couple hours to eat or cry or poop, which sucks, but I'm not a newborn baby, I'm not a parent, I'm just a 27 year old human being who has not slept more than an hour straight since Thursday morning. (Plus, I don't want a damn baby! And if I do, I'm getting a baby nurse because this. shit. is torture.)

Anyway. I know this accuracy of my sleep timing because I keep a sleep app open and it tells me these things. I'm not sure how much I believe in its' accuracy when it comes to measuring REM and that stuff–it's just an iPhone, and maybe it's just an iPhone and CAN do that, which is perhaps scarier–but what I do is hit the sound machine button when I'm going to sleep, and then swipe it when I wake up.

Right now I'm experimenting with different noises Sleep Cycle offers. The rain made me have to pee and so did the babbling brook. I went again with no noise. Then some white noise, brown noise, pink noise, no noise again, city noise...

I once lived over my favorite bar in the Bronx, in the neighborhood where I went to school. It was so loud, but I slept fine, probably because most of the time I was passing out from drinking too much at said bar. That was before I had cancer though, and although I've had lupus and Other Random Diseases since I was a baby, the cancer changed my body for the worse.

The loudest place I ever lived was that castle building in Hollywood/Los Feliz. At night the LAPD choppers would scream above me, and I always felt like an earthquake was coming, and I was excited and unprepared and already shaping the narrative of how I'd tell it: "So, I had no flashlight, and my iPhone battery was down to 88 percent...". The earthquake never came. I didn't sleep well there either.

But this is bad. This is hospital bad. Hospital bad is a different sort of bad because they wake you up every 2 hours to check vitals and there's always doctors and nurses and priests trying to save your soul streaming in and out. But I'm not in the hospital, and I wish I were, because at least then I'd have IV Dialudid (legal heroin, basically) shooting into my veins and I wouldn't be so fucking aware that I am awake. Also, they have cranberry juice there, and I could really go for some right now.

I'm rambling.

My eyes are crossing again which means it's time to close them again. I can keep them open for about 10 minutes, enough time to pee and tweet and complain. I can type when they start to cross, but only with one eye open. Reading is hard, I forget everything I've watched on TV, I keep re-reading recaps of the episodes of Scandal I've watched (all caught up!). I don't have the energy to watch last night's Girls but watching The Bachelor's okay because it's just a blur of molded flesh, tan against the blue background, the white snow.

I'm going to try and go back to sleep again. But my mouth is getting worse. And I'm taking oral pain meds and Advil PM and even half an Ambien but I'm awake, and it sucks. I'm sorry for complaining and not bothering to edit or reread this. You can correct my grammar and tell me to throw the iPad away or maybe give me a remedy. Just don't say guided meditation because at this point, my subconscious has visited every damn beach in the world with Bachelor Sean Lowe and yet here I am, wide awake (and it's morning).

I guess I have to say one more thing, and it's this: I wake up screaming "NO!" or with my head pressed into the pillow, my face scratching back and forth against the pillowcase as I try to stay asleep. I am screaming sometimes. Maybe I am an infant. Maybe this is all a bad dream...

OK. Back at it. Talk to you in an hour. Or maybe 18.



New York City

What to say but that I have an incredibly full life.

I have friends, long time friends, short time friends. I make friends easily, I am charming, I can shake a hand and tell jokes and sometimes it's the old Bergin bit, but they don't know that yet, they are new. And my friends smile when they introduce me and I feel warm and glad and being outside is wonderful.

On a Friday night, I sit in a bar for four hours with Sam and we decide we are going to help the world, to give back. And we bullshit and we laugh and I run into an old high school classmate. Sam leaves and I engage with her until my time is up; my mouth has run dry, the painkillers have receded. The narcotic warmth I once felt is slowly creeping back inwards from my fingers and my toes, back into my gut, and I know I must be going home.

I get a cab and my friends are in Bushwick, telling me to come to the show, but I give the driver Genevieve's address, where I am staying while she is away. I climb into bed, and I count out my pills and I do not feel lonesome, not yet. This act is familiar.

Two hours I awaken and the pain is red hot, black mascara tears streaked across the pillow case, my face swollen, eyes puffy. I have to be at the museum in 8 hours but I do not sleep for the rest of the night. I take the drugs, I read, I mumble the f word until I linger between feeling and sleep.

On the subway uptown I think of the ways I will avoid the pain today. I text message pictures of my mouth to my friends in med school. We agree that upping the prednisone will heighten my blood sugar but will decrease the sore and that needs to happen, because the sore, the big one, it is a white albatross on my tongue, a crater, an open wound in the most vulnerable of places. I buy Anbesol for 10 dollars at Duane Reade and subway drivers look at me, ever so briefly, as I apply the coating.

At the museum, I have fun, I hold babies and I make children laugh but I cannot forget about the pain; it takes the wit I have and it dulls it, as sharp as the butter knives the Indians used to husk corn. I point out the tools to the kids, and they are amazed at the hunting and gathering done so many years ago.

Sometimes I want to talk in sentences and paragraphs but I cannot and when Claire and Jess ask how I am, I cannot lie. I am finding more and more that the lie I have told so much: "I'm feeling better!" will not come. It sticks, stubborn in my throat. They know how to do nothing else but to hug me; this is enough, it is what I need. Slowly the Anbesol I have reapplied saves me, and I forget momentarily that my day's obscured by sickness.

It is on the train ride home that I let the drink I had at the station mix with the half of the painkiller I had left and I lie across an empty seat and thank the NJ Transit worker who let me into an empty car when she saw that I could not be among the others, the noisy others. She found me a bathroom and an outlet and did not ask me about the tears of pain and exhaustion in my eyes.

What I am saying is that there is kindness here, in this world.

When I get home I finally scream, I throw up from the pain, I let my mother rub my back. She does not tell me to buck up, to think of the children in Africa. I reach out in a wild rush to a friend and his response is as perfect as one's can be. My cancer friends remind me of things to look forward to.

And I do, I do, I see how good I have it, I see this love-filled life I have, I see the miracle that is being me. I see my strengths and I loathe my weaknesses. I love my life; I want to leave it forever.

I cannot change the physical pain, though, and I fear it is slowly taking me away. Am I defying this fate or am I avoiding it?

I am avoiding it, and I will, for as long as I shall live.


The Thing I Never Say

I went away with my friends for the weekend, a big gaggle of them, friends I have known for 7 and 10 and 12 and 0 years. We rented a cabin in the Poconos and at one point I laughed so hard I didn't think I would recover.

Did I ever tell you that illness is addicting? That it can be a crutch? That it is a way to stay inside all the time because it can be justified?

I never had social anxiety. I was voted class clown. I have always been open and social and easy to talk to.

When I got sicker after I finished cancer treatment, I got depressed. For years. For years I was depressed and drank so much and apologized and stayed inside. I have spent years of my time inside.

When I got to the cabin, I was hit with anxiety. I took half a Xanax to relax around friends who I'd happily call family. By the end of my weekend, I couldn't believe I was panicking that I'd forgotten how to be the me I always was and always will be. That for my entire drive there (3+ hours alone in a car blasting Lyle Lovett), I worried everyone had moved on and changed and I had stayed inside too long.

Sometimes it's necessary to have a crutch. To stay inside. To take half a Xanax. To sit on a closed toilet seat with your phone in your hand because zoning out feels like comfort.

But we need to be able to walk without the crutch; to drop it and just be.

Because sometimes, you walk toward exactly the right place.