And Tell Me, What Have You Learned?

Oh, 2012. You were full of surprise, from the first days of January when my sister announced she was pregnant, to the middle of September when my doctors told me I was staying in New Jersey. You surprised me with love, and sickness, and First Descents and a sense of community I've never known before.

You were good. You were rotten. You were new.

This year, I learned...

1) Patience. How to wait. How to lie here and let the pain take me, let it surround me, let it take over. How sometimes you cannot fight it. How you must let it be.




2) Friendship. I have not been a very good friend to some; I have been a great friend to others. When my friend Lauren died, I learned that there is always more you can do as a friend, and to do those things before it's too late. This year,I am learning not to take old friendships for granted; that they, too, need attention. I am remembering friendships within family are so vital to who I am and how I was built.

I am learning that anything worth a damn requires time and attention.




3) Movement. This year I took up running and hiking. I ran up mountains and down valleys in California. I felt my body move in ways it hasn't in years. And though I have been benched since the end of September, I haven't forgotten the value in movement. In owning your body. For me, this is an especially important thing. I often feel I have no control over my body. Exercise has taught me that is not true. And it is a valuable lesson.

4) Love. I feel like my heart got cracked open this year when my niece was born. There is no love like it. And then there's Joe. Who I didn't see coming. Who I didn't know I wanted until he was there and we were together and laughing on his couch.




5) Breath. This sounds new age-y and unlike KPB (bitch likes her Xanax) but this year I began practicing guided meditation and it has aided everything from my old tendency to drink my pain away to random moments of stress. When I forget to breathe, I forget myself.

This has been a happy, hard year. A year for lessons and for love and for reevaluating what's important.

I wish you all a happy 2013! Thanks for continuing to read and come along with me on this journey.

Love,
Kelly

New essay on the Huffington Post

Read it and I'll love you.

A Health Update

In September, it was decided that the plan was to stay in New Jersey, rest,  get a new set of doctors and figure out a comprehensive plan. I was put on a low dose chemo and  the ultimate goal was to get off the prednisone.

Two weeks ago, we lowered my prednisone dose to 5 mg, down from 30 in September. With prednisone, I don't get mouth sores. 

Without the sores, life seems manageable; although I am always in pain, I am able to be present.

When my mouth is full of ulcers, I cannot talk, breathe or eat without that buzz–that deafening roar–eclipsing my moments, shielding me from living in the present.

Pain takes away what I work the hardest on: being truly present to experience each moment of my life, good, sad and painful. I believe that paying attention is crucial to cultivating good relationships, to enjoying life, to checking bad behavior. It is hard to do without pain.

It is impossible to do in this type of pain.

The sores are back. They have been back since Monday. When Joe wakes up, he will see many text messages from me, all complaints, all pleas, all apologies for complaining. He will tell me he's here for me, he will ask what he can do.

He can't do anything. And I feel like I am robbing him of having a fun girlfriend when I am down like this.

The treatment is not working. I know this, because the sores are back. I know this because the sores are just a symptom of the disease gone awry.

I am afraid that we are back to square one after nearly 4 months and I am terrified. I have given up an entire life in California for this.

I want to be better. I just want to be better.

I just want to feel okay.

three oh seven am, friday.

i wake up with my body already in motion. my leg is kicking the sheets and a loud feeling– a buzz– has overtaken my body.

the buzz is the pain.

inside my mouth, raw ulcers coat the top of my lips, the side of my tongue, the roof of my mouth, the inner cheek. 

a cold stuffs my nose so i breathe through my mouth, and the air irritates the open spaces, just enough to jolt me wide awake.

i don't know if i was asleep when i began the "fuuuuuck' but i am awake as the syllable stretches to that final 'k'. i am out of bed and in the bathroom with the magic mouthwash, a lidocaine mix that will temporarily coat this mess.

i count the hours since my last painkiller. it is not time to take another, so i will wait it out. 

yesterday Joe shook me awake because i was crying in my sleep. my cheek was hot with tears and salty as he kissed it, as he pleaded with me to tell him a way he could help.

but there are no ways, and tonight i am alone. tonight i am feeling all of it, the physical and the emotional. there is such a large loneliness in feeling something so large alone.

it is anger, what i feel. it is a sigh. it is resignation. it is knowing that i will never know a life without pain and it is self pity.

it is me saying "fuuuuuck" over and over again until i somehow find sense in all of this, a narrative. i must be feeling this for some reason.

i need to be feeling this for a reason.

for any reason. for any reason at all.

here's a link for my column in the huffington post

Click it or ticket.

Be kind. Live big.

My friend Lauren passed away a few hours ago from melanoma. She was 30 years old and the best cancer fighter I’ve ever known.

She was my mentor when I was a wee junior copywriter at H&S and eventually I helped her deal with cancer. But it was more like she helped me; calling every hospitalization, texting me dirty jokes, buying me breakfast. We were friends who understood something most of our others could not: this horrifying world of illness.

And Lauren got it. She really did. She got that life was short. She got what all us cancer kids get: an unfortunate but necessary perspective on life. We are not here for long. Remember that.

I'm shocked a spirit so vibrant and so memorable could be gone. Lauren fought harder than I thought possible. In doing so, she revealed herself. And she revealed the good in others too.

Keep that with you. LIVE LIKE THAT.

Be kind. Live big.

All I Want for Christmas is a...Tooth.

You know how sometimes you're eating a bagel with cream cheese for dinner?

No? You don't eat that either? It's a great dinner.

Anyway, last night I was chowing down on an everything bagel (don't tell my diabetes doc) and I felt a pull.

A tug, if you will.

I screamed: "OMG I THINK MY TOOTH FELL OUT!" Joe rushed behind me to the bathroom, ALL WHILE FAILING TO CONTROL HIS LAUGHTER.

He laughed so hard at me, guys. I would never laugh at him. Sure, I had a chuckle when his computer stopped printing and he acted like someone was trying to assasinate him, but still.

I looked in the bathroom mirror and this horrifying sight befell me:

That's incorrect. It was more like this...


I looked like a meth addict on Intervention. 

So this morning I frantically went to the oral surgeon, who confirmed that the tooth was abscessed and would have landed me in the hospital in a week's time.

Thank GOD for my love of carbohydrates. That bagel saved my life.

After Doctor PullaTooth extracted my fallen incisor, I was sent to a 2nd dentist to make a cast for My New Tooth, coming soon to Kelly's Mouth!

I was so actually so pitied after they read my medical history (love you, cancer) that at the 2nd dentist's office, they gave me their People's Sexiet Man Alive issue. And they are coming in tomorrow to fit me for a fake tooth as I may have lied and said I was meeting my boyfriend's family for the first time on Thanksgiving.

EITHER WAY, I ain't eating ,my Thanksgiving bird like Billy Bob Berg.

I hope you all have a nice Thanksgiving and keep your teeth where they belong: on the sidewalk after an Irish Catholic family brawl.

Toothlessly yours,

BB Berg.


(PS: I'll be featured on the Huffington Post this week. Billy Bob's gone Hollywood, y'all!)

Sandy

Loch Arbour, August 2012

I'm not sure if I'm ready to write about the storm.

The storm that has changed our lives, 

From Before Sandy to After.

I'm not ready to write about the destruction,

About how peculiar it is 

to feel homesick for places that have been destroyed.

I cannot write about that emptiness.

I am thankful that we are safe. That we are alive. 

That the damage sustained was minor.

But this is heartbreak. 

This is our home. Our towns. Our memories.

These are our flooded, sandy streets,

the streets we scorched our bare feet on as we ran home from the beach for lunch.

These are our broken boardwalks, built with the wood that gave us splinters;

these are the boardwalks we hid under when the sun shone too bright.

And this is our ocean, the one that turned on us;

This is our ocean that pulled us and our bathing suit tops under the tide,

and then smiled on us, gliding our boogie boards gleefully to shore.

I do not know a childhood memory that does not involve my home, 

the Jersey Shore.

We will rebuild. We will move on.

We will put faith in nostalgia and each other.

We will. 

We will move on.

Asbury Park, September 2012

Please consider making a donation to The Red Cross. We need your help.

What I Packed for My Hurricane Evacuation

Asbury Park, October 28

My parents live on the water (1/2 mile from the ocean and on a lake), so I booked it out of there because I’d rather be stranded with the Boyfriend than my parents, who keep yelling at me to clean my room omg I live at home now and I'm 26 where is the wine

Anyway...the eye of the storm is literally heading for where I live now (sob), so I’m at the Boyfriend’s for the next three days. 

I predict this will be the ultimate test of our relationship so I have packed the following:

1) Noise-cancelling headphones for when he watches Dexter (now-I've been shushed twice for air-drumming to Billy Joel while typing this post)

2) All of my Hanson CDs to convert him into a FANSON or else this relationship is really over

3) A razor. ROMANCE IS NOT DEAD JUST BECAUSE WE MIGHT DIE

4) His and her bottles of wine

5) Insulin in case I go all Stacy McGill during this bitch

6) Cosmo magazine (haha jk…it’s Glamour)

7) Duplicates of all my pills cos lupus don’t care bout no damn hurricane

8) A pill crusher to slip my Xanax into his breakfast for when I start to whine from inevitable pain due to life-threatening diseases that are the reason I AM NOT IN CALIFORNIA and AWAY FROM THIS DUMB STORM

9) 50 Shades of Grey in case I want to kill myself before the storm hits

10) Salt and pepper shakers because he’s lived in his apartment for 6 months and still didn’t have a set. SERIOUSLY.

11) Candles, in case the power goes out or I decide to get romanti--HAHA no.

Wish us luck/find me a new boyfriend for Wednesday!

A Life Worth Living

Yesterday-
I sat alone in Dr. Kick Ass’s office, my ears
Hearing the clinical,
the scary,
the disease names
spun from Latin.

Words–things!– that pin me to this bed,
my chest tight with what ifs.

I have never admitted to feeling fear,
Not the way I do now,
Knowing I have so much more to live for.

I know now,
more than ever-
I don’t want to leave anyone
behind.

I will swallow these pills,
I will pump my body full of these toxins.
I will sit through extractions and screens and tests
and I will 
eat spinach raw.

Because I won’t...
I won't leave anyone behind.

(Photo credit: Katie McKnight Photography)

Controlled.

Xanax Dialudid Vicodin Fentanyl Klonolipin Prednisone Imuran Vfend Flexeril Diauludid again yes more, more I can’t think of, more in the bag beneath my bed, more in the notepads stacked on doctor shelves. More for the next time. More to scare me, to heal me, to fix this, to make things worse and better. More ways to go down, more ways to fly out, more ways to take a deep breath and say:

This is not me. These are not mine, these are my body’s.

(There is importance in that distinction.)

MY IV, Me and One Midnight Adventure

I wake up, startled and confused. Where am I? A quick look at my veins confirms the pumping I hear from the IV next to me. I'm back in the hospital.

The clock reads ten to 3, and the quiet tells me it's the middle of the night. Which night, I'm not sure.

I look at my phone. It's early Friday morning. I woke my mom, crying hysterically, at 3 am the night before. I came in for the swollen jaw I've been complaining about for weeks, but just last like last time, I was admitted for something else.

Sepsis.

A term I'd only heard before on ER but a quick conversation tells me it's actually quite serious. But we caught it in time before it poisoned my blood and killed me.

I remember the shots of prednisone and insulin injected into my arm. My sugar was 515 before bed and I forced myself to sleep.

But now it's 3 am and I am starving.

Last month's trip to this very hospital taught me a few things; always stay in the new building, where the room is pimped out Cribs style, and raid the nutrition closet when the nurses aren't looking.

I unplug my IV and almost immediately scale it to shut the beeping up. I slam my fingers into the pause button until it quiets itself. It's just a short mission, old friend. We can do this.

I'm halfway down the hall before the sound of sneakers shuffling on rich, donated carpet alert me. I hop into a patient's room, a patient who did not expect company.

"Lady," he croaks. "What the hell are you doing?" He's so loud. I whisper back "The mental ward was full." He nods, and is about to call for the nurse when I hop back out.

The nutrition pantry is steps away, filled with cereal and cranberry juice and joy. I'd cut a bitch for some Rice Krispies right now.

With the coast clear, I grab onto my pole like I'm stripping for cash and shuffle toward the door.

I'm here! I made it! I go to to turn it!

And it's locked.

I'm here. And boy, am I stuck.

Staying

I miss California.

This line has ran through my head all day, as the air begins to bite, as my feet get and stay cold. Morning breaks and Joe opens his windows. It smells like the season, and it reminds me of one year ago, when I left New Jersey for California.

I lived in Los Angeles for only 9 months and planned to be there for longer. I was to come back after my sister had her baby in September and I ran my race in Denver. I had a ticket bought for the 24th of September but the plane I caught in Colorado was not bound for LAX. My ticket back to LA went to waste; I watched the plane board before I got on mine, just one gate over.

A month ago, I met Joe and knew immediately that going back to California was going to be different now. But I still wanted to; I still planned on it. Despite the strength of our feelings from the start, thinking otherwise was foolish. I had plans.

Two weeks ago, I watched my niece take her first breath and felt changed, too. Like staying here and being near her was imperative. Necessary.

And then, three days later, a new doctor stood in front of me, holding my blood work results–a thousand symbols I don't understand– and told me I had to stay here in New Jersey. That right now my health was too unstable to keep moving around; that I needed a team of doctors to handle my care; that there were lines to be crossed and tests to be done. I need comprehensive care, something I've let go of as I lost insurance.

For years, I have stretched out my denial as I have stretched out my youth.

I have moved constantly, traveled well, and bristled at the thought of leases or permenance. I have fit my youth in with doctor's appointments. I have given up a career and hesitated to start another. I have lived like I was healthy, like my body could handle another bruise.

But I need to take care of myself now so that I can live longer later. That's what my doctor told me a few days after Sadie was born, and a week after I met Joe and started picturing that longer life. A longer life I have never given much thought to; a life I have not planned for, for fear of jinxing myself, my health. But it's a life I want and deserve.

So now I am being forced to stay in one place. To sit still and get well. And part of me truly hates that I am not back in California, that I have lost my life there, if only temporarily. I hate that I will rely on my parents to house and feed me.

A year ago, when I was hungry for change and a different coast, I would be devastated. It would crush me, this step backward. In some ways, it still does. But when I hold Sadie or laugh into Joe's chest, it feels like a step forward, too.

So this time, I will do as the doctors say. I will stand here. I will be patient and I will trust my instincts to take me where I ought to be.

To thrill me, hold me, and push me closer toward the life I covet.

We Did It! $2330 Worth of Awesome!

Three days before Saturday's race, I went to see a new doctor who told me I was in an active, serious lupus flare and that running would not be recommended in Denver's altitude. He also recommended that I quit nomadding (new word) around and settle down for a bit. I nicknamed him Dr. KickAss because he really did kick my ass about not taking these diseases seriously and moving around without establishing care. I wasn't doing anything crazier than my peers (working, happy hour, surfing, trips to Europe where you drink wine for every meal...), but further denial that I was sick could seriously damage my health.

I took what ole Kick Ass said into consideration and made the choice to stay home in New Jersey for the foreseeable future, until my health stabilizes. I have a team of doctors here who are working together to make sure my body and mind are strong enough to live a long life, a life I want and deserve. It is worth giving up my life in California and a bit of my independence and pride. (And it doesn't hurt that I have a beautiful new niece to enjoy, and a boyfriend who dotes on me here, even if he does make me realize that The Cheesecake Factory is the greatest place on Earth and OMG I AM NJ!)

But before I changed my plans for the next 12 months, I wanted to do THIS. I wanted to run the race I have spent all summer training for. So as I left the doctor's office, a little shocked and definitely shaken, I vowed I would run anyway. I would stop and walk but I would finish what I had pledged to do. I told my parents and my boyfriend and my friends that illness can have me Tuesday, because first I was going to run in Denver and have fun with my cancer camp friends.

And so I did it. I was slow, and I was hurting, but I EFFING did it.

And I am positive that I wouldn't have done it without you. So thank you.





Thank you to all those who donated, to all those who gave us support, who wished Meghan and I luck and told us we could do it.

Thank you to those who held signs and screamed our names. To the emails we got before we raced, to the support that made me take deeper breaths and think KEEP GOING KEEP GOING KEEP GOING!





Thank you for guiding me. For giving me strength. For supporting an organization that is teaching me so much, that is giving me friends who understand me in a way no one has before. That is connecting me with other survivors who breathe life into mine and know what it means to have to change your life because of illness.

I will be recovering this fall, winter and spring in New Jersey. I will hate it at times. But I will have the memories of this wonderful weekend in Denver, Colorado.

I will know I can do what healthy people can do. I know that one day, I will do it again.

Thank you all.

Love,
Kelly

Sadie Margaret

A week ago I put my hand on your mom's belly and told you it was time to come out.

On Friday, even your mom put her hand on her belly and begged you to come out.

And on Sunday night, at 8:18 pm, I watched you, Sadie Margaret Robert, come into the world. I have a photo of your first breath because I'm a crazy aunt who kept her iPhone next to your mom's head, but I have a feeling you won't want me to show anyone. I still haven't forgiven Grandma for keeping that picture of me at 140 lbs displayed. IN OUR FRONT HALL, NONETHELESS.



On Sunday night, our family changed. It grew by an 8 pounder with red hair and chubby cheeks. It added a new heartbeat–yours. And that new heartbeat changed all of ours.

Sadie, you are joy. I am looking forward to you fetching me Entenman's donuts while I'm living on Mommy and Daddy's couch and writing dystopian novels for children that oddly never sell. I'm looking forward to teaching you to boogie board, and play basketball (sorry dude, Mama can't dribble) and rock flannel way better than the other hipster infants.



I'm going to take you to Brookyn and Los Angeles and I am going to love you harder than I have ever loved anyone. I already do.

Sadie, welcome to the world. It's a scary, strange and beautiful place, but you are surrounded by all the love we could possibly summon. We are so happy you are here.

Love,
Your Aunt Kelly

I've Seen Sunny Days...

Sometimes I worry that people think that I write only to garner self-pity. That I am so desperate for *hugs* that I document every hospitalization or cancer diagnosis or surgery. (Eh. I fucking hate hugs.)

I write these stories as a way to remember. When I am not in pain, I am experiencing freedom. However, sometimes all the shitty feelings I have inside of me and all that bad impulses that I have resurface, even when I feel well.

I am jealous and I am petty sometimes. I am cranky a lot. So sometimes I go back and look at what I wrote when I was ill. I remember how much worse it could be. About how I should celebrate every moment of health, just as I abhor every moment of pain.

I believe that I have reached a lifetime's limit of pain. I believe that exists. I believe I will keep pushing that ceiling until I die. (Hopefully not before they make a Full House reunion movie.)

But I don't believe I will ever experience enough joy. I experience tiny moments of joy every day. It's what keeps me alive.

Today my jaws were cut open and I yelled loudly and kicked my shoe at a wall. It's 4 am and my gums bleed and I wait for painkillers to kick in.

Tomorrow I will do something joyful. I won't forget this pain, because it will never go away.

But I will remember and move on.

Because this joy? This joy keeps me alive.

My Heart Will Go On (A Kelly Blogs from the Hospital Post)

One morning not so long ago, I was flossing my teeth (as I do every single day, Doc!) when I tasted blood filling my mouth and quickly realized I had broken one of my back molars.

Now, I'm not the best about oral hygience. I don't have dental insurance, and the medicine I take contributes to easily broken bones and teeth. Until I got obsessed with those little flosser things, I hardly ever flossed. (Unless I'd eaten an everything bagel.) But as I've matured and become obsessed with flossing, my teeth have improved.

Naturally, since I'm so responsible about my health, I ignored the aching jaw that had kept me up more than once. Yesterday my condition worsened and it was apparent it was infected, so I hauled ass to the ER, where they have a dental clinic. I was in the ER for nine hours until they decided to give me pain meds and antibiotics, and force me to come back to their clinic for repair.

I gathered my stuff and called my dad to come get me. As I waited, exhausted (it was well past 1 am at this point), my doctor came in with a look on her face.

"Your heart rate is out of control. We need you to stay."

My heart? I came in here for my jagged hobo tooth! What's love (okay, my heart) got to do, got to do with it?

It turned out by pulse hadn't dipped below 130 in 9 hours, which is a Very Bad Sign. Most people have a pulse around 60. Considering I was resting this entire time and am in fairly OK shape, it's worrisome. My colorful medical history worries most doctors, as lupus is possibly responsible for inflammation in my ventricles.

And so I was admitted to the cardiac and stroke unit this morning at 5 am, where they promptly hooked me up to a million wires.




I'm stuck with sensor thingies everywhere from under my boobs (or what I call N0-Man's Land) to my feet.

I look like ET, when he's being tested by awful, curious humans. They even forced me to wear a bag around my neck to carry the sensor. Pretty sure that won't be debuting this week at New York Fashion Week.




Hopefully tests will prove that my heart is really fine (and it TOTALLY is, all ex-boyfriends!) and I'll get to leave today or tomorrow.

Until then thanks for the wishes.

And no worries....

THIS HEART WILL GO ON. CELINE DION STYLE!

Love,

Kelly "Ba Boom" Bergin

Summer, summer...

I spent most of this summer wrapped in the sheets I slept on as a teenager. I drove our family’s last Volvo between my house and someplace new: my father’s.

I watched as my parents tried to navigate their first summer apart in 40 years. I watched as they fell back toward each other. I shook my head, I smiled, I said they never give up.

I put together a baby seat for my niece. I helped my sister ready the room for her baby, due in a few days.

I drove home and thought back on the summer, which seemed to go by in a flash. It always does. One day I was in the hospital, the other I was dunking lobster tails in Maine. At different points I was home in California and New Jersey; I was home in Brooklyn and Indiana.

I once thought I wanted to live everywhere. I thought I could take root wherever I wanted. But I also guessed I thought I’d grow out of this phase by now. That I’d crave a lease and permanent marker on an office door.

But I’m not; I do not crave anything at all.

I am finding ways to be everywhere. I am surrounded by love and that roots me; that keeps me still.

What is Hope?

Last night I laid in bed crying--

I do not often cry.

Last night, I laid in bed crying
the cause being the exposed nerves in my gum,
the ones that are unattended to and often forgotten,
until they are inflamed and present and real.

Last night I laid in bed crying, something I never do, while rocking back and forth and listening to the pain as if it could tell me something, teach me something, help me in some way--
and my phone beeped so I looked at it
and I answered the text.

Last night I made plans for today, even though last night I could do nothing but listen to the roar in my body,
listen to it take me over,
and then respond by making plans for the next day.

Hope is believing pain ends.

Hope is how I live.

Sunrise

On the nights where I lay in bed for hours, wishing for sleep, the thought of seeing the sun rise consoles me.

This morning I put my sneakers on at 6 and wrangled my dog into her collar and leash. I strapped my iPhone to my arm and we took off for the ocean, a 3 mile round trip.

Running through this latest lupus flare has been tough. I missed a 5K this weekend because my ankles swelled to twice their size. It's harder for me physically, and it's hard mentally to accept my limitations. To resist the urge to push until I do more damage.

But my body surprises me. When I think I'm on empty and I am out of breath, I find that we have made it here.

I stop where the sand meets the ocean, and I stare, and I marvel at how lucky I am that I am here to see this; how lucky we are to be here at all.

Nightmares

I've mentioned before the phantom dreams that haunt me when my body is under attack and my adrenal system is pumped full of steroids. It's the moments between consciousness and unconsciousness, when I'm aware that I'm dreaming but I'm not fully able to stop. 

Tonight I was dragged under–and that's how it feels, dragged under the rip tide with no way to swim out–and my half dreams were more vivid than usual. I heard the little girls laughing, pulling me off the couch to get up and play. And I saw them playing ahead of me at the lake, but I couldn't join them. Eventually they no longer saw me; they forgot I was ever there.

As I fell more deeply into sleep,  more images appeared, almost too quickly for me to see. My friends, dancing at my favorite bar in Brooklyn; my camp friends at our race in Denver. Again, the further I got pulled into sleep, the less of a participant I became. They couldn't see me. They couldn't hear me yelling, asking to them to wait up.

In real life, I have missed many milestones and inside jokes because I wasn't there, because I was sick. I have come to peace with it but I still hate missing things. I still fear slipping away.

These dreams are nightmares. These dreams are loss.

Maine

Sand Beach, Acadia Park

I spent the last week in Lincolnville, Maine with Brenna and Erin, friends (and old roommates, as you may recall) who I don't see nearly enough. I had a great week; my stomach still aches from laughter, feeling tight from the thousand crunches I definitely did not do.

Erin and Brenna, pre-puke

I ate lobster for most of my meals and supplemented my candy addiction with ice cream every night. I sailed through the Penobscet Bay and made fun of Erin for being seasick until she puked and I laughed so hard I almost did too. (If you've never seen red wine come up on a sailboat, you haven't really lived. Also, never get sick in front of me, as I will laugh and fail to offer any aid.)

I pretended to be Cali Kelly and hiked to the top of Bald Rock Mountain, where the Atlantic lays before you in panoramic views. Views that make you stop and say "Oh, shit."

I jumped into the 50 degree ocean at Sand Beach in Acadia National Park. I used my body as it was meant to be used; hiking, running, jumping and swimming. I felt relaxed and down to earth. We existed in a true vacation mode; our alarms were set, but only for more vacation time.

Bald Rock Mountain, Maine

But still, the pain I feel from this latest lupus flare stuck with me. And because it existed, I had to share these moments with the holes in my mouth, with the sharp pain shooting through my gums. At times, the vacation euphoria I felt was deafened by the pain. The pain was apparent every time I laughed too hard, opened my mouth too wide, or ate. It was there in every bite of lobster I took. 

And it pisses me off.

I hate my body for doing this. For fucking up any plans I had to be happy and carefree and young.

I hate that I have tried, many times, to get over the fact that my body is trying to kill itself from the inside-out. I even hate that that's the definition I have to give to people who wonder what lupus is. "Oh, lupus? It's just my body trying to commit suicide! Ha ha! Insert funny joke here!"

I hate that there is no way to live both ways; there is no way to feel the pain and not feel it too.

I hate that every flare reminds me that I must keep faith in myself, that I must believe in something that will end my pain quickly. I hate that I have found that the Something I believe in is only myself, and my ability to do what I have done a thousand times before.

My trip was wonderful and beautiful and those are the memories I will have. I am lucky to have them. To have the chance to laugh with my friends and see the beauty this world has to offer.


----

On our last day in Maine, we stopped in Portland before heading down the coast.

We joked about getting a tattoo all week. We went through several bad ideas, including my idea of a lobster tattoo to commemorate all the fallen lobsters I ate this week.

Eventually we decided on this. We saw so much beauty this week. We trudged through miles of evergreen trees to see the ocean, bluer than I thought possible.

I also like the strength and endurance of the evergreen. It’s a reminder that I can bear this pain and more.

A reminder that this week, I did just that.

Friday, July 20, or: The Day I Don't Remember

i woke up and i ran at 6:30.

at 8:30, fully recovered from my run, i took the dog and did another mile. i called my dad and asked him to bring me a whole wheat everything bagel on his way over to my mom's.

at 9:30, i texted my cancercamp friend that i had a headache i couldn't shake and that my vision was blurry.

at 1:30 pm, i interviewed a candidate for a job i am filling in chicago.

at 6pm, my dad called me and woke me from a deep sleep, a nap I hadn't planned on taking. "Kel. What are you doing? Why haven't you answered my calls?" I looked at the time and started freaking out. "What's wrong? Where's Mom? What's happening?" I thought it was 6 am. I thought it was the next day.

I have no memory from the hours of 8:30 am until 6pm. They are completely gone to me.

After realizing this, I pieced my day together by looking at text messages and emails sent. I was coherent enough to interview someone well enough that they sent me a thank you. I was coherent enough to text.

But I have no memory, and that scares me and pushes on my rawest of nerves.

I want to be present. To have full consciousness. To be sober and awake.

We figured that the blackout was a result of my body's adrenal system getting used to tapering off prednisone. The painkillers I took last night before sleep did not help the situation either. But I took nothing else. There's no alcohol or narcotics in my body, and haven't been since last night. (There was never any booze.)

I can't explain the fear that gripped me today as I realized I remember nothing. As I iced my head, hoping it would relieve my migraine pain.

Illness is so disorienting. It muddles your mind, captures your sense of self, and obliterates reality. It is in control.

I need to be in control. I will fight for control.

Today, I lost. But my migraine medicine has kicked in and tomorrow I'll be on my way to Maine.

I will win the next round.


- Posted using BlogPress from my iPad

My First Post-Hospitalization Workout: A Horrifying Video Post

WARNING: Images in this video may scare or confuse young children. They may ask "Why is that lady the color of tomatoes? Is she Rudolph?" Images in this video are not intended for those prone to vomiting.

I recorded this video in one take after running for the first time since I got out of the hospital. I've begun my training for our half marathon relay, and it is NOT pretty.

But it is amusing.

Enjoy. And donate!

Love and many thanks,
Kelly "The Tomato" Bergin

P.S. Our training progress can be followed on Tumblr, too!

thank you

have i told you lately that i loved you?

i do.

i love you for donating.
i love you for telling me you were going to donate.
i love you for even thinking of donating.

i love you for donating good thoughts and support and love
because they count
just as much.

--

this year, i am learning gratitude. i am finding it everywhere.

i am humbled by the people i meet these days, by the struggle i see in my friends to be their authentic selves. i am in awe of the ways i feel my life is suddenly cracking wide open, my lungs reaching to catch the wind.

this is gratitude swelling in my chest, bursting out every time i smile or hug my mother or talk to my sister's stomach.

and so i implore you to be grateful. be grateful you can breathe and walk and smell the morning dew as the sun streaks across the sky, bringing light. be grateful for your health, for the ease with which you breathe.

i have hated my body for its failings for a long time. but today, i am grateful for the health i have. i'm grateful for the ways i can stretch, pull and bend it, the ways i can move my body in the ocean and across the sand with two laughing little girls following me, yelling my name.

i'm grateful for fear for taking me as far as i could go and then suddenly letting me free to speak my mind, to be authentic.

i am grateful for having the freedom to look inside myself for a good, long time. i am grateful having learned that when you do this, you gain the ability to connect with others in invaluable ways.

and i am grateful to my friends and family, and for the lessons i learned from my family at First Descents. i am grateful for their strength, from which i borrow daily.

so, thank you. all of you.

thank you for being here.
thank you for being the hand in the dark.
thank you for being my team.

Surviving, Thriving and Surfing, Too.

(Donation link is here, if you don't feel like sifting through my wordy prose: http://teamfd.firstdescents.org/2011/fd/denverrocknroll/dotcom/)

In March of this year, I became a 4 year cancer survivor. In one year, I will reach my 5th year of remission and officially be known as cured. (Ooh, I like the way that sounds...)


Sounds nice, right? Unfortunately, the effects of cancer last much, much longer than that. And coupled with all them other diseases I have, the recovery has been difficult. I've struggled to find the balance between my sick self and my real self. I've tried to meet people who I could connect with, who quite literally understood my pain.

But I never really did. Until a few weeks ago, when I went on a trip with First Descents, an organization for young cancer survivors founded by Brad Ludden.

Their mission statement encapsulates what they do and why they are so awesome, so I shall list it here:

First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

You got chills, right? And FD means it. Our adventure trip was surfing for a week in the Outer Banks of North Carolina. I was anxious and worried I would drown. I was sure that I'd suck. 

Which was sort of true--I surfed, but I did not look good. When I stood up for half a second and started shouting in excitement, I fell face down on my board. 

But we cheered each other on: we were constantly taken by surprise. I won't forget one new friend's face when he declared he'd met his goal to stand on a board. The experience, as well as our shared medical history, bonded us tightly.

And the bond holds. During this past week, when I spent 3 miserable nights in the hospital, I had a roster of people to complain to, to empathize with me, to tell me "Go for the extra push of Dialudid." I'd never had that before; suddenly, I was not alone. I am greeted with such support from family, friends and readers but it's always difficult to explain how I feel. No longer.

Going on First Descents allowed me to see what I was able to do physically and expanded my view on relationships. I forgot about my limitations due to lupus and cancer. I was whole, free, complete.

Because this experience so changed my life, I have decided to train for and run a half marathon relay in September with my fellow FD'er, Meghan. 

Yes, me, whose unofficial Native American name is: She Who Never Runs Unless Body Is On Fire Ow My God My Legs Hurt.

But I am going to run it, and I'm going to do it to support First Descents.

Every survivor deserves this chance I had, this opportunity to see themselves in a new light. Cancer can destroy us, but First Descents is the provider of a new, necessary light . 

Meghan and I, as survivors, still face plenty of physical limitations. But with your support, we know we could really make a difference for FD. If we meet our goal of $3,000 total, more young adults will get to go to camp and have the invaluable experience we had.

Please consider following along as Meghan and I write about our laughable training process (help!) on our blog and tell everyone you know about FD.

Another way to help, aside from emotional support and/or dozens of rosaries said in my knees honor, is through a monetary donation. Say, what you'd spend at Starbucks. Or Costco, if you're so inclined.

Your donation goes directly to FD and helps another young adult embrace their challenges and live a fuller, freer life--even with cancer.

The site to give is here: http://teamfd.firstdescents.org/2011/fd/denverrocknroll/dotcom/

Thanks for your consideration of this worthy cause. And thanks, for your constant support. Illness can be a lonely and sad place, and you guys have pulled me through time and time again just by commenting or tweeting me a hello. So thank you.

And I swear, I'll never ask for money again. Unless your name is Mom, Dad or Grandma.
 

Love and thanks,
Kelly "Dotcom" Bergin

Shit My Roommate Says: A Fun, Interactive Giveaway!

Yesterday, my current roommate was brought in. She's very old, cranky and coughs incessantly. I know the cough isn't her fault but she also hates me and I'm sure some of its' loudness is on purpose.
I am going to list 12 items she may or may not have said to me. Three of these statements are not true.
Leave which ones you believe to be fake in the comments section. Winner gets a set of my fancy free hospital toiletries.

What NOT To Do: Hospital Blogging, 2 Day

Day 2 of the hospital finds me disappointingly not better. I am, however, comforted by all the drugs and the kind faces. My mom works at this hospital and it's been fun, seeing her in her element. It's kind of nice being---

Fuck it, I wanna go home.

But before I do, here's 10 easy steps on how to avoid shame and suspicion at the hospital.

1. In a fit of boredom, try to use medical tape to wax your armpits. It does not work, and you will be forced to call for ice.

2. Pray for a quieter roommate, because then she'll be discharged and you'll be stuck with yet another octogenarian who stares at your boxer briefs in disgust.

3. Try to go to the bathroom while on a hefty dose of Dialudid and Morphine. You will think an attempt to pee in the men's urinal is a fun thing to try, but the embarrassing clean up is no laughing matter.




4. Pull out your own IV because you want to see if you can put it back in, due to your "education" from all those ER episodes. You cannot, and your hand will be forced to be used to feed you, leaving your misshapen claw looking like this.




5. Cry about your lack of bowel moments because "it's keeping the rest of my depression weight on."

6. Text your exes under the influence of pain meds. Messages that read " I wanna funkck summer" will not be construed as the attempted: "I want to have some platonic, well-lit fun this summer!"

7. Don't write a blog and then attempt to check it in the hospital, because you will be forced to see the truth about the illegal, unethical life you live. (Rude.)


8. Play "basketball" by shooting open packs of jello and pudding into a trashcan. The look on the room aides (mother's) face will haunt you as they scrub gelatin and chocolate from the floor.

9. Ask the X-Ray tech if he can see your nipples in an X-ray. He will be insulted. But I'm pretty sure he peeks.



10. Play the Muppets soundtrack on Spotify for a calming reminder of your long-gone childhood. The hot new residents will enter and begin to scribble hasty psych ward transfers just as you are hitting the high notes on "The Rainbow Connection," oblivious to their stares.


Thanks for you continued support of this here illegal blog. Your comments have made my day a little brighter.

Love and other drugs,

Kelly "The Illegal Bergin"

Hospital Bloggin', Per Usual

It's 3:30 on the day after the fourth of July. This is the third year I have been hospitalized on this exact date. (See July archives to check if I'm right!)

I am pumped full of steroids right now and the psychosis that they cause is absolutely terrifying.

As I attempt to sleep, impossibly real images flood my brain. A family member, head cracked and bleeding on the ground. My friends, unaware of the truck barreling towards then. And me, screaming with no words to come out.

In each bizarre pre-sleep dream, I am helpless. I am flailing.

The most common image this drug seems to recall is a time a few years back for a similar issue. My body was splayed out on the hospital bed and I knew I was very ill. The nurses called the doctors in and my body was pushed full of medicines. The needles poked my body without warning. They held my hands back as I flailed.

I was pinned. I was out of control.

Life with Lupus

I'm often asked what it's like to have lupus. I never really know what to say, so I've drawn up this daily timeline to illustrate a day with Captain L. (That's lupus. It's captain of my hot bod.) Next time someone asks, I can be all "CHECK KELLY-BERGIN.COM, YO!)

9am: My alarm goes off but I hit snooze for the next hour. Lupus patients often feel worse in the morning.



10: I get up and take my thyroid replacement. This is actually due to the cancer I had, but hey, we're all friends here.

10:02: I attempt to get up to quell the raging river in my bladder. I'm too young for Depends!



10:04: I start coaxing my body to get out of bed. "Come on, pal. If we get up now, we can have Berry Berry Kix for breakfast! No Kashi!"


10:06: I swing my legs over the side of the bed and attempt to stand. It looks eerily like this:



10:08: Finally, my body relents and I walk to the bathroom. I'm not sure how to put this other than it feels like running in a pile of mud, sand or snow. My legs are often swollen and the fluid prevents an easy gait. Also, I'm just naturally spastic.




10:11: I brush my teeth but because of my mouth sores, it feels like someone is pouring salt or baking soda into the tiny holes into my gums. I punch the walls in anger and then slump dramatically to the floor, a technique learned from watching many Lifetime movies when home sick as a child.




10-Whenever: I work from home (usually my bed) while allowing myself my one cup of coffee a day. Because lupus tends to aggravate my drug-induced diabetes, I try to stay away from too much caffeine.




4pm: Time for my daily exercise. I spent a good part of my years not exercising, only to find that when I did, I was MIRACULOUSLY better! Unfortunately, I'm still not what you'd call "in shape", so my runs tend to look like this, except better dressed:



6-2am: I eat a well-balanced meal of cereal and/or healthy food, depending on who's cooking and where I happen to be living at the moment. Here in NJ, my parents eat dinner like normal human beings, so I am treated to real food! It's glorious, guys! Move home! Be like me! SEE HOW NICE YOUR HAIR WILL BE!



I've cut back a lot on the drinking because it was making me into an insane person and aggravating my Multiple Diseases, so I try to avoid distractions. Luckily, that's easy when you're living at home and your parents have CABLE!!! What a treat.


2am-4am: These are the dark hours, when I pray for sleep. Because I take prednisone (a steroid that stops lupus from attacking my body), my brain doesn't like sleep...at all. The drug amps me up, causes anxiety and generally rips my body apart. I've been healthier lately and have tried to ease off the Evil Drug, but it still blows. Here's what my 2am tends to look like:


4am: I tend to fall asleep around this time if I'm having a particularly unlucky night. I say prayers to Whomever and then count the things I'm grateful for, which are a lot of things these days. And then, an easy slumber.



And that, dear friends, is a typical day with lupus/cancer/weird immunodisorder. It's not that bad, really. I always say: a girl can get used to anything. (Including unlimited supplies of candy buttons. Get on that.)

Love,
kb