A Post With a Narrative; Or, Kelly's Second Newsletter; Or An EntirelyNew Blog Post If You Don't Subscribe; Okay.

Let's just skate right into the mess.

 

This spring, after lots of back and forth between hospitals in NYC, NJ, and California, I decided to consolidate most of my care to one hospital. Here is the very long story of how and why this came about, the new genetic disorder I know I have and notching my second carcinoma in only eight years. Read more for more fun! 

Since I left New York in 2012 for the great unknown (the rest of America), the most important members of my medical team were scattered in Los Angeles and New Jersey and that one airport clinic in Ohio.

Now in 2016, my doctor at the helm of Operation: Keep Bergin alive is an immunologist I met when I was sixteen and leaving my doctors at Children's Hospital of Philly after 15 years. I was also in the midst of My Very First Lupus Flare and was seeing every doctor in New York to figure out what the hell was going on. I first met Dr. Cunningham-Rundles (known as Dr. C) in 2001, when I weighed considerably less, had a crush on Zac Hanson and Amanda Bynes, wore a puka shell necklaces and had approximately 1/3 of the diseases I know have today. Dr. C is "doctor famous" in her field and in NY for being a freakin’ genius. See? http://nymag.com/nymetro/health/bestdoctors/features/593/ And she’s famous to me because I’ve seen Robert F. Kennedy Jr. in her office, and Fantasia from American Idol (not together but SHIT, that would have been RICH).

 

When I saw her again in late March, I had been away from Mount Sinai for five years. We had a great reunion and I updated her on the health sagas that'd unfolded while I was off in LA, or Istanbul, or laying in the sun's evil rays in Asbury Park. Most importantly and seriously, I told Dr. C about the autoimmune diabetes (type 1 is my particular kind) that had was diagnosed in 2012. My type one is brittle and dangerous, swiping years from my life expectancy with its' damage and projected damage to my organs.

 

While things have improved since I got a Dexcom (wait, you don't know that a Dexcom is a continuous glucose monitor that checks your blood sugar every five minutes? Did you know Nick Jonas wears one all the time, even on stage and during sex? Did you know he said this corny quote about the Dexy? Does he know that he's my hero? See image!)

Okay, Diabetic Jonas Coma over. My blood glucose levels have improved and continue to improve since I got Dexter, but it's still harder for me than most to maintain levels. Some of that is just the nature of the disease. Some of it is my Zootopia fruit snacks addiction. But also because I don’t want it to be my fault, my diseases actually do work against each other, bullying one another so that my infections cause blood glucose spikes, which cause fatigue and sickness and dehydration and, in the long term, heart, skin, eye and kidney damage.

 

Yikes. Yeah. Dudes, I know. It's a mess. And it's a rare kind of mess, one not easily scrubbed by a course of antibiotics or new bone marrow. I’m all about a transplant fixing some of this shit (it may work, one day…)

 

Dr. C decided to run a gamut of genetic tests to see if she could finally pinpoint an underlying disorder that explained the strange pattern of disease (which is called, no i am not kidding with this many letters, chronic mucocutaneous candidiasis). She'd always believed that there was an underlying mutation causing the long word I said before, the lupus, type one diabetes, thyroid cancer and the T-Cell disorder that makes it impossible for my body to fight fungus. She always lamented that the test to find the mutation hadn't been invented yet. And before I left for California, she joked that I'd have to stay alive it out so I could wait her research out. Which, cool. Was hoping to.

 

Upon our reunion, she informed me that there was another genetic test she wanted to run on me and it totally only cost 3 grand cash. But the day had arrived. They drew my precious, rare blood, and sent it off to Grey’s Anatomy and three weeks of significant studies at Seattle Children's Hospital. After confirming the test, the geneticist sent Dr. Cunningham an email, which she forwarded onto me. It turned out she was absolutely right--not only did I have the mutation, but the test to pinpoint the mutation that I have wasn't even invented when I was born. What are these scientists doing sitting on their asses all day? Jesus!

 

Dr. C drew me a little DNA cell on the tissue paper on the exam table. I did not understand a single word of it but Google tells me the mutation basically causes my body's DNA cells to remain in an "on" position when it comes to fighting illness, cancer, or disease, thereby destroying the good antibodies alongside the bad ones. For all you geneticists, doctors, nerds, and scientists out there, here's a journal study explaining the mutation that I have. http://jem.rupress.org/content/208/8/1635.full

 

This was a pretty significant finding and I was called back to see Dr. Cunningham-Rundles immediately. (I usually see her twice a year.) She instructed me to continue to follow-up on the symptoms that have turned my diseases from manageable to truly miserable. First, I had those bothersome abscesses in my mouth fixed by casually removing the rest of my real teeth. I also dove (and continue to dive) into appointments meant to address symptoms that have been bothering me for months. The usual good stuff like unexpected and certainly significant weight gain (can I have all your old pants), cold sweats, fevers, vomiting and nausea, and every other sort of hellish experience you can imagine. Dr. C even instructed my rheumatologist in his handling of my lupus. Her reputation, freakish brilliance and vested interest in my case made me feel immediately better. I started a physical therapy regimen for my slipped discs and narrow neural pathways in my back; I went on the right mix of blood pressure medicine (100 mg of labetalol and 20 mg of avoiding my mom when she watches Fox News); I scheduled a minor surgery for gastroparesis for the end of the month; I made an appointment to get my eyes and bladder checked because they were bothering me too; I saw a nephrologist for my kidneys; I had a full and surprisingly normal neuropsychiatric evaluation (I know, what a fool); I started a pain management routine, my doctor gave me synthetic pot...it’s been a busy summer.

 

] was in a great hospital system in Jersey but it’s impossible to get doctors to communicate with each other and since my Jersey hospital has spottier wifi, I went with Mount Sinai. At my last follow-up with Dr. C, she insisted that only the best and the brightest fellows in her department work on my case. The Supernerds and That One Canadian, we (I) named them. And we’d have the best of the Upper East Side do the rest. The brain trust, she called it. It would start and stay at Mount Sinai but expand to doctors at the National Institutes of Health, where cases like mine, or its' kin, are seen.

 

And so for the last few weeks, I have been in and out of the city, seeing doctors in town, staying with my brother and cousins, having an absolutely hellish and brilliant time. I'll give you a metaphor: one night after a couple of brutal appointments and sweaty, energy-sucking walks around dumb beautiful New York City, my high school best friend and current life best friend Genevieve came over to my cousin Audrey's appointment and made me laugh so hard that my muscles spasmed and I actually cried from the pain of laughing too hard. At which point I was cry/laughing “what the fuck, ha ow, my life is like a bad poem, sob, laugh, get me a pen and a Moleskin!”

 

The appointments have been hard and scary but the family and friends and Love Interest have made it an incredible summer, significant and chockful of new information for me to understand, think about and maybe even write about.

 

I'm doing that now.

--

 

So this is where the newsletter ends, had I finished it on Sunday night like I planned to. But on Sunday I missed a couple of calls from my dermatologist, who was casually calling to chat about my biopsies. First off: it is never a good sign when your doctor personally calls you himself to deliver test results. And on a Sunday? A Sunday of A HOLIDAY WEEKEND? You better believe I was updating my funeral playlist in between our game of phone tag.

 

On Monday, we finally got each other on the phone and he let me know that the rash on my skin he'd biopsied--the one he and Dr. C believed to be some sort of virus--was actually fucking cancer. I was midway through screaming the f-word when he casually mentioned it wasn't melanoma. OK COOL, Dr. L. Next time maybe mention that first before I’ve already looked up the local embalmer in the goddamn phone book.

 

I don't have melanoma but I do have squamous cell carcinoma, all over my arms and legs. It came on very quickly--I went from one biopsied benign spot back in September to an explosion of pink polka dots all over my arms and legs. I matched far too well with my pink gingham shirt to pull it off. I hate the spots and am so embarrassed of them, although a lot less so now that I know they're cancer and not some weird flat wart virus that I wasn't going to tell anyone about because I do care about not dying the f alone, you freaks.

 

The skin cancer changes the game a bit, and I need more biopsies if I’m going to start a treatment for the genetic disorder (a low dose chemo). I also learned that my hormone levels came back a bit whacky, which made me feel sane because I have been having very strange fits of hot flashes and tremors and profound sweating (which sounds like a brag but is definitely not). My doctor here dismissed it but my doctors tested for the appropriate hormones, which came back at inappropriate levels. So while I am sort of crazy and in awe of myself for passing a four hour neuropsych eval, I feel saner knowing that the crappy way I feel is not all in my head. Some of it definitely is, though.

 

So, it's Friday night at 7:39, and I slept for 58 hours straight last weekend, and I'm ready to do it again. Thank you for your patience in this update. I know many of you have called me or my parents and wanted to know exactly what is or was going on, but this is really the only way I want to disseminate the information.

 

Straight from the horse's mouth.

 

Thanks for loving and caring, gang.

 

Love,

Kelly

30 pound weight gain. Thanks cancer + prednisone!

A Light-Hearted Dispatch from Hoppy, My Newly Named Hospital Bed

I've officially spent 8 days here: Wednesday. Thursday, Friday, Saturday, Sunday, Monday, Tuesday, Wednesday. Today is Thursday and I'm for another night.

If you remind me of how beautiful those days are, I will cut you, and you'll be reluctant to free me from anyplace, anytime.

This morning was interesting! I was going to get to go home, despite the nonstop PukeFest2014, but then my blood sugar tested at 545.

In layman's turns, my pancreas is Jack at the end of Titanic. Occasionally spurting out some signs of life, but mostly just frozen, half-dead and weighing me (here, I am Kate Winslet. Duh.) down. 

I've got no love for my pancreas. Float away, already!

So I'm here another night, having been tested, scanned, radiated and stuck more times than I can count. Oh wait yes I can it's SEVENTEEN. These baby hands may charm and freak you out, but they are shit when it comes to pushing IV drugs. DUMB BABY HANDS Y U SO SMALL?

My parents have been here regularly, cleaning me up when I puke, changing my lines and helping with everything because, you know..."I've been a nurse for 35 years!"

And she does help. And I'm grateful for her and Dad, who's constantly dropping in even though I am a cranky, drugged, sick, stinky millennial, tweeting my miseries into the great big Cloud of Embarassment. He's here, and so are Kristie and Greg, and many more friends and family have called, and wrote me and made me feel so much less alone. Sorry I won't let you visit, but I look rabid.

My team of specialists (basically a full football team) has figured out what's going on and though I don't care to specify at this time, I will admit to saying this. IT SUCKS. My body is an automated Berg-killing machine! Luckily, everything looks benign, but we must kick some gastric, pancreatic, neurological, psychological, rheumatologica ass before I attempt to strike out on my own again.

California will be there, unless it falls into the sea (sooorrrryyy) and I will be there soon. I am aiming for November. 

But more than that, I hope to be managed and healed and alive to see Sadie turn 2 in two weeks and 21 nineteen years from now. Baby's first lemon drop shots! Her realization that Auntie Kels is a cougar and she should run to another bar! I can't wait!

Kids, I don't live a day without pain. But that's not gonna stop me living. It's a big world. I've only just begun.

Thank you for the support and gifts and love. I am humbled and emboldened by each of you.

Love and drugs,

Your Kelly

PS: Many of you have asked how to help: fundraising for First Descents would be the ultimate gift. They are my cancer family and the best thing I have ever been a part of: Dotcom Fundraises for Important Cause

Thank you. I love you all madly.

hospital life

wed/thur/fri/sat/sun/mon. 6 nights here and I don't think I am leaving yet. I'm so cranky and I won't let anyone in, to see me or otherwise.

six nights means I'm used to the smells, the noise, the unending clash of bells and whistles. the wake-ups, double now that my blood sugar needs to be checked. so midnight. two am. four am. and every two hours onward.

I am allowing the drugs to block this out but the haze has to lift (and it does, an hour after the IV push). the memories will resurface and bind themselves to me, scar tissue on my fingers and belly and arms. tiny scars. a broken summer.

on Friday I am supposed to move to Los Angeles. this is no longer. I have realized it would be foolish to go in the midst of what my doctor dubbed "a bad, bad time." I don't know if I have given up or accepted the reality that no doctor thinks it's a wise choice for me to travel right now, let alone deal with the stress of a cross country move.

I had been so looking forward to a restart but I have to tie my laces before I run. 

soon I'll stop running fevers and throwing up. I'll stop with these allergic reactions. and soon they'll figure out why my diabetes isn't responding to insulin the right way. soon they'll diagnose me with something else and put me on a new regime.

until then, I am here.

The House

This house, pictured here, stands on the corner of my parents' street in NJ. It has long been my favorite house in our small coastal town, but lately it's had an odd effect on me. It's my reminder of the dreams I had as a girl, and if they'll ever fully be mine again.

--

I stand here for a minute while the dog sniffs around, and I picture a game of football on the lawn, a tussle of cousins and siblings with grass-stained jeans and Giants jerseys on their backs. I look closer and I see not only my extended family, but a partner and kids of my own in the mix. 

Yes. Three kids, I think, looking up at the tree for a spot for the World's Coolest Fort. Maybe even more than 3. All boys with sturdy, Scottish and Irish and French names. 

And good health for them, and for me too. No durable medical equipment attached to my body, just maybe a kid or two in a sling across my chest. I picture cartwheels and sprinklers and childhood, unfurling across this blank green space.

I stand at this house and I think about this dream, the one I've given up on, the life that I'm certain I do not want.

But there's something about this house, this lawn, that has me thinking of the adventure I'm most afraid to embark on. It has me wondering if I'll ever have the courage to pursue it, and if I really ever can.

Does this house remind me of my girlhood innocence, or does it soften my jaded edges and impulses, the ones that tell me I am too sick for this life, that I belong on the road? Or, maybe, is this house telling me that the dream is still a possibility, and it is one I must pursue?

There is time, I think, as Shea pulls her leash, eager to sniff some new grass. And I need more.

The Greatest Currency

I have been up all night, so forgive any typos or grammar errors. I am frustrated and I feel like saying this, and so, I will.

--

I know it cannot be fully appreciated until it's gone but do one thing for me, today. 

Cherish your health, your sleep, your ability to rely on your body to walk or go out or even watch TV. Cherish it. Think about it. Just think about your feet and your hands and how nice it is to move and dance and breathe. How lovely cold tile feel on barefeet in the summer and how good water pressure can make you suddenly awake.

Teach yourself to remember this when you are dealing with a sick or elderly friend or family member. Try to remember how upset and annoyed you are when you have a cold or a stomach bug or allergies. How you feel failed and frustrated and cranky. Imagine how the chronically ill and dying feel about their bodies, constantly in pain and criminally uncomfortable.

Good health is freedom. Good health is a currency to covet. Good health is everything. And for the past few weeks, I especially have lusted for it. 

Because It is so much harder to be without it and still want to live. It is so much harder to be a friend because hiding away is easier, because your pain is not on display, because you can sleep and in sleep, you are free. Living without health does not take away the world's beauties or reasons to stay alive, but it leaves you feeling caged. Stuck in the exit row of the plane that waits listlessly on the tarmac as you alternate between feeling hot and cold.

So, please:

Love your body and take care of it. These are things I need to do, and I think we should all do them together. We should all learn these lessons together. Good health doesn't last forever. But let's make it last for as long as we can.

And thank you to all of you who have shown me kindness along the way. It means the world to me.

Love,

Kelly

Ambien and Antibiotics: 2007

An excerpt.

--

  My tooth hurts on Wednesday and by Thursday I am in agony. I shove the pain underneath my pillow with the shirt I wore to bed and I get up and pull on my pants, half heartedly brush my hair, grimace into the mirror and I go to school.

By noon, my tooth has become a flashing light, a hazard sign on the side of the road.

I can’t chew, so I slide food down my throat. At lunch I choke on my salad and Brendan whacks me across the back in the cafeteria.

After awhile, I can’t ignore it so by Friday I am in the dentist’s chair, and on Saturday I am swollen but fine but I decide to miss Halloween because I cannot--will not--

drink for the fun. And though I have always thought of my Halloween costume as my chance to shine, I’m tired and I do not have the energy to create and drink and forget.

So I get on the train, heading to my parents in NJ from my college in the Bronx. I get pissed because I can’t find a cab and this is unfair and I am entitled to something being easy, I just want a cab. I just want a cab to take me home.

My dad picks me up and hands me the soup he knows that I like and I lay in my bed in New Jersey and watch movies and maybe the medicine will work.

But Sunday I wake up and my face is a wreck, all shapes and circles, all hard lines disappeared underneath this mask. My mom comes upstairs and says “shit” and we are back on the turnpike, I am in the passenger seat, slack and out of control. In the ER they call it edema. And because I am special and worthy, and because once at Children's Hospital in Philadelphia they called me the mystery child, They Are Confused.

And because I am entitled and young and susceptible, they rush my room and I do not complain when I get a bed in the wing for old people. My roommate is at least 80 and naked and there’s just so much awful about aging alone and this is not graceful.

The surgeon visits and he says “we need to go in and drain this”. My mother leaves the room because I’d rather be alone. The scalpel meets my skin and my gums bleed and I kick the sheets and I scream on the inside and I am told how tough I am.

I get back into my bed, wiping blood from my face and stubborn tears from my cheeks. I call the nurse for morphine, plug in my headphones and write so that I can remember this feeling, this pain that I will push underneath my pillow the second I get a moment alone.

On Monday, they free me. I go back to class on Tuesday, in Memorial Hall, I am rolling through the hallways, a smile on my face, playing for the cameras.

They all call, leaving messages on my phone, asking, wondering, caring. And because I'm fucked up, I don't return the calls. I don’t want to talk to anyone. I don’t want to tell them that it’s okay. I am tired of answering the same fucking questions. NO. I don’t feel well. And I don't feel like saying it again. I lay with my pain and I keep it for myself.

Before bed, I take the antibiotics for my infection and I take the hospital's parting gift, a bottle of Ambien. I take a hit of the joint my roommates pass around and I lie down, my brain lighting up in places, too young for this. But I cannot function right now without help. I am flailing. 

Literature and War is my first class today and I trudge downhill--when I say trudge, I mean trudge, because all of the time, there is snow on the ground. It feels like that. Like four feet, minimum and I have to get through nothing, the something that does not exist, just to get to class.

I know it’s from the pills but I cannot shake this blanket of exhaustion and I drink coffee and my hands shake. I try to take notes and I try to focus and usually I own this class, my hand perpetually in the air;  I know this shit, I know this book, I own, I own. But my tongue is heavy in my mouth and I imagine that I have suddenly gained a speech impediment and that’s my last clear thought before my eyes start to narrow.

It’s all I can do not to pass out but I fail and I see Mike look at me across the row, concerned, reaching. One word escapes my lips before I slip to the floor.

I wake up much later, back in my bed and I’m surprised to hear that I walked home myself that I said I was okay, that I only missed one class, only one class. I sleep more but I miss my friends and I force myself upstairs. We put on the DVR and catch up on Gossip Girl. I feel awake now, and not everything is shit, and we are laughing.

 --

Image via Lauren Modery

back to newyorkcity

It is the end of February. I am 28. I am not 22, the age I was when I started this blog. A few weeks ago, I was surprised to see I net more web traffic than ever before. I post here rarely; I'm not sure what to say that hasn't been said. Who am I now that I wasn't 6 years ago?

--

Scar tissue.

--

There's been organs lost and battles waged on the inside. There's a decline in health and a rise in self-awareness. I drink less. I do less. I swim more. I travel more. I dive headfirst into either everything or nothing.

--

This week I slept three straight days. My Jawbone UP band told me I took 324 steps yesterday. I think that was to the bathroom and back into bed. How pathetic! I write these updates and I look back and some of them are so similiar; I feel powerless, I try, I fail, I whine.

--

Movement.

--

On February 8th, I moved into an apartment in Greenpoint, Brooklyn. I haven't lived in the city since July 31, 2011. Nearly three years have passed since I called NY home. When I lived in California, I was certain I'd never go back to New York City. There was so much air in California. I had my Lost Days, the days where I slept, but it was with the windows open and the sunlight streaming in, fierce. It was beautiful and it was lonely and it was hard.

I had to make myself do things. I had to make friends.

Moving back to New York...that first week reminded me of moving to LA. I have plenty of friends in New York, but I hadn't connected with them, really connected with them, in some time. You can't just go back. Things have changed. People have changed. In New York, everything changes, and the city forgets you.

You forget the city too. You walk West when you mean to walk East. You transfer subway lines and end up going the wrong way. You learn about new ways to travel, a ferry that goes right across the East River...perhaps these things had existed in the 7 years I spent in New York, but I'm relearning them.

I'm relearning my friends, and my relationship to this town. I had a good first week back.

And then Claire visited, and I stayed with her and my new pal Aidan, and we had a great long weekend, snowed in on the Upper West Side.

My friends threw me a birthday toast, and I took the train home on the 17th to NJ to see my family.

--

I've been home in NJ for 10 days now, almost half of the month. I spent half of the month in NJ, napping with Sadie, napping with the dog...napping.

My friends and I spent last weekend in the Poconos, swilling cheap beer and shopping at Wal-Mart.

That's a lot of money to waste on not being somewhere, and I've come up with a thousand reasons I haven't gone back.

But mostly, it's hard to reintegrate. It's hard to admit that! And I have been so tired. Sleeping, managing an out-of-control diabetes, bronchitis, and mouth ulcers. I have been sick and I have wanted the comforts of my bed in NJ, my parents 100 feet across the yard, the dog asleep at my feet.

Maybe most people want the comforts of home. Maybe I'm not cutting myself a break. Maybe I don't push myself enough.

--

Tomorrow I'm getting on a train and going back. I feel a little bit better. The sores have receded and the cold and diabetes...well, I reckon they'll stay for sometime. I've made plans for the weekend and next week.

If I need to go home to NJ, I will.

--

There are different parts of me, and they all want different things. My brain wants my body to get its' shit together, and my body so does not want to do that. It's all "fuck you, brain." Stupid body.

And my heart. My heart belongs in two places, maybe three. And I'm strung out, hoping to touch them all. But I'll try. I'll run headfirst into this adventure, this year of 28.

What else is there to do?

--

Thanks for reading along the way.

kb

Six Years Out: World Cancer Day, 2014

I remember the moment my parents told me I had cancer. I remember the shock, and my boyfriend's arms around me. I remember crying, calling my friends. I remember how Rachel and Gen rushed over, tears in their eyes. Meghan and Erin's cracked voices over the phone. My cousins...my siblings...my parents' fear.

I don't really remember surgery. I remember checking in. I remember going home.

I remember the radioactive iodine treatment. The men in Haz-Mat suits, giving me a toxic pill to swallow as they stood the recommended amount of feet away, tape measure in hand. The walk behind my mother to her car.

I remember driving to New Jersey with my mom, who wasn't afraid to be near me, even though I was quite literally toxic. My friends visited through the bathroom door. I was isolated for a week. My dad bought me a TV. My siblings were scared.

--

Next month, I'll undergo a full-body scan to make sure nothing's left. 

My doctor said there's abnormal lymph nodes, so I'll get an ultrasound too.

--

These six years post-diagnosis have been the hardest of my life. Cancer doesn't end when treatment does; it's effects linger, especially if you are young when you are diagnosed. 

Young adult cancer survivors used to exist without acknowledgement. They still have the highest mortality rate out of all cancer populations, because they are often overlooked. To be young and vital and then suddenly sick is terrifying.

I remember the depression right after treatment. It was all a blur; I graduated from college 2 months after I was diagnosed. Everything was happening at once.

--

I can't imagine my life now without the friends and community that I've come to know through this terrible disease. I can't imagine a world without their friendship and support. It is the silver lining.

--

Cancer destroyed my body. Cancer provoked Type 1 Diabetes; last week, my doctor told me it was the trigger. It took a mild case of lupus and made it suddenly more severe. I have been so sick and so sad. I have been angry and depressed.

--

This week, I move to Brooklyn. I have been home for almost 18 months, recovering and then getting sick again. I've accepted another diagnosis. This month I turn 28 and I'm getting an insulin pump for my birthday.

I didn't live for so long; I slept. I call them the Lost Days. But as I look toward the end of my twenties, I don't want any more Lost Days.

I am not better, but I am okay with that. I am moving forward. I am healing, even if that means I'm not medically any better than I was a year and a half ago.

I have had so much support. My parents are amazing; my sister and my brother and cousins are my rock. My friends are steadfast and this community builds me up when I am lost. 

--

Let's support each other. Give whatever you can to fight cancer. It takes so much. It is not a gift, and we must defeat it. 

I recommend the American Cancer Society and First Descents. Too Young for Cancer is also a good organization for young adults battling this disease. Give toward metastatic breast cancer and Ewing's Sarcoma. Give toward melanoma, or Hodgkin's and thyroid and pancreatic. We need advances. We need them now.

Link to donate to First Descents is here: http://tfd.firstdescents.org/site/TR?px=1004761&fr_id=1060&pg=personal

--

Thank you all for inspiring me to keep on. Thank you for all your support these past six years.

I am so lucky. I am so grateful. 

I'll never forget the friends we lost and will lose. I'll always remember their fight and determination and I will call on that on days I am not up for living.

This is what it means to survive.

Dig In

A Day in the Year of Healing

I have been coughing all night. Before I slept, I texted Ashley to see what drugs I could mix with NyQuil. It turns out, not many. My ribs hurt and my body cracked and creaked. I'd slept all weekend, like my body was shoring up energy for the storm that is coming, the storm that sends out signals in between waves of coughs. Cough, tremble, inhale.

I slept for a good ten hours Sunday night, despite waking up at 4pm. I woke up and the dog was wild, licking my face, begging to go out and for food. I tried to ignore her and my bladder; here, I was unsuccessful. I fed her the banana I've been meaning to eat. Still, we were up early. Dogs are exhausting, and I don't even do all the stuff. 

My mom came back with Sadie in tow. I hadn't seen her in 12 days and she was happy to see me, though she grew happier with me as the day wore on. For lunch, I fed her broccoli and pasta and artichokes and spinach. She ate so much broccoli that I started humming a tune. Broccoli monster, Broccoli MONSTER!! I sang it at her and she started laughing. So hard I was worried she choke. Broccoli monster! I tried to take a video but she shakes her head at my camera now. She's 16 months old and she's starting to really interact. She listens to directions and brings me what I ask. She loves to play basketball, feed her baby doll Max, and climb up the stairs. Every age, I think it's the best. I'd like to capture her here for a little while, but she's already toddling off, leaving me behind in Gymboree class, in search of big kids and whatever toys they've got.

In between all the moments, I could not help but think of my friend Lauren. Her dad died yesterday. Her family has suffered two deaths in 14 months. A family of four, whittled down to two. You never want to believe that life is that precious, that fragile. We say it all the time: YOLO, hold on to this moment, live here now, but I know I often refuse to accept the fact that my family won't be whole forever. And it devastates me to see it happen to a family I love and care for. The whole thing reeks of unfairness, except isn't it just what life is? We live and then we die. But to lose a daughter and spouse in 14 months is still, still unfathomable. 

Sadie was wiped after Gymboree and Target and went down easy. Boom, lights out. I came up to the apartment to sleep but found I could not. There is so much I am failing at. I'm not taking it one day at a time. I'm not eating the fucking bone soup! I'm walking but not as long as I should. I'm getting up but only some days, the rest are spent asleep.

I'm trying to look at the big picture. It looks beautiful. Full of adventure and extra pages in a passport. It looks so full. I'm not tired, I'm not sick. Everything is a little bit easier. But I'm not entirely on my way there, no matter what I say. I keep thinking: I'll do better later, later. But later is stupid. Later is not now. Later will come and I will be here, the same. 

And I don't want that. I know life is this precious, this fleeting, this fragile. It's fast. It's toddling away from me.

What I guess I am saying is this:

It's time to dig in.

Hospitalized Again: What Being Back Means for My Year of Healing

In this oh holy year of healing, I expected setbacks on my attempt to achieve healing. I recognize that it will take baby steps, and not gigantic leaps into suddenly transforming myself into a new, healthy person. This became apparent to me when I was hospitalized just 9 days into Kelly's Year Of Healing (trademark to come.)

Why am I back here for the 3rd time in 3 months? Well, much of this has to do with weaning off steroids, which I did at the start of the year. I was immediately rewarded with a sore throat and mouth sores worse than the ones I encountered at Christmas. 

I have also been feeling very confused and dizzy, not always sure of what movement I was making or what words I was typing. (So if this makese no sense, contact me or a mental health professional.) This was attributed to my low blood sugar. I consider myself self-aware, for better or for worse. So to wake up screaming for my mom and being surely it was 6am in July and I was in a hotel somewhere was odd because really, it was 11pm, I'd just woken from an ill-timed nap, and I was in the apartment I've lived in for a year.

It's absolutely terrifying, this run of diabetes I've had. I'm afraid to go to sleep sometimes because my sugar crashes are so bad that threats of a seizure or worse, a coma, are very real. My numbers also spike so high that my kidneys are in danger of real and permanet damage.

I went to see my lupus doctor yesterday and my limbs and body were so achy that I lay facedown on the table, waiting for him to come in. My face and ears burned. And surprisingly, I had a temperature. I rarely have a fever over 99, so to spike from 99 to 101 to 102 was reason enough for my doctors to want me hospitalized. It's best if I'm back on the steroids (argh) and get antibiotics for an infection, all by IV.

And so I am back here again, in the hospital beds that feel so familiar to me, tethered to a machine pumping me full of incredibly strong and scary drugs, wondering what's next.

I want to get better on my own, without the help of drugs. I want to get better by utilizing nature's cures. I want to travel and seek out the value of Eastern Medicine.

I am expecting too much of myself and I'm losing sight of the goal, which is to feel better.

It's NOT to suddenly become normal like my friends, to suddenly slip into the life I've wanted since I was a terribly sick 12 year old.

I'm hopeful I'll get better, but I cannot change how illness has shaped me, no matter how much kale I eat.

I'll likely be here for another night or two. I'm hoping to read and think and rest, and give my body the replenishment it apparently needs. Next week I'll see my Eastern Medicine Healer Chris in NYC, and along with my Western medicine docs, we will build a plan for a better 2014.

As always, thank you for the love and support.

--

Oh! An essay I wrote about culture in 2013 was published last night on Thought Catalog. I do hope you'll read it here: My Year of Cultural Abstinence. If that doesn't work, just click here: http://thoughtcatalog.com/kelly-bergin/2014/01/my-year-of-cultural-abstinence/

A Funny But Serious Post: Great Title, Kel!

I'm on day 20 of this dizzying sickness. It has been Hell, in the simplest, most humble of terms. And so for the last twenty days, I've lied (laid) (lay) (lie) in my bed, casually fantasizing about the gun emoticon on my phone...to, you know, jump out of my iPhone and take me out. Admittedly this fantasizing was done under the nastiest shards of pain, a shock so bad it confused me into thinking that I don't want this life, not like this.

See, I'd just need one fake bullet. Or two, because it's likely I'd miss and shoot my wall instead, and I've already put a hole in it by bouncing this ball against the plaster for the last oh, sixty or ninety days or so.

This ball's seen me through a lot of hard times. See, I've been down. Low, low, low. Lower than ever before.

I've never been low enough to picture the gun, to squeeze the ball, to embrace the sheer enormity of my physical pain and cry.

I don't cry very often. It's sort of a rule in our family, though not often talked about or discussed. It's kind of like nudity at the breakfast table. You just...don't. Dinner, maybe. But crying? It makes people uncomfortable. It makes me uncomfortable.

It makes me appear vulnerable. Ugh. So gross. So weak. So...mundane. I cry, because I'm not inhuman, but it's usually over commercials where the actors are aging from birth to college graduation in rapid order. Now those! Those are worthy of shedding some tears. Here's a favorite: (This is an audio-visual blog today, folks. Strap in!)

(My god, that kid is cute. Maybe one day I'll make one for Sadie. I definitely have a picture of her from every week.)

Back to the point: I didn't cry much before. And then in August, September, I hit the Wailing Wall of Tears. It was SobFest2013. It was gross. I became addicted to a certain Kleenex brand, like some Target-shopping commoner! I cried giving myself insulin because I didn't want to be diabetic; I cried when my mom said the wrong thing, even when it was benign; I cried when my dad begged me to get it together. I cried over THAT DAMN COMMERCIAL like ten times.

I cried and then I reached the Hole of Desperation and Blackness. Here's where all the Bon Iver and sad Paul Simon came in. I felt this way for awhile. Too long. And it was very, very serious. Serious to picture the gun. 

I considered going inpatient. I considered outpatient, and I still think group therapy is something I may do in the future. (Once I get over the miles-long waiting list of my fellow depressives: raise your hand if you have a favorite antidepressant!) I stopped one medicine and I started on a new medicine and I talked to my doctor and therapist for many, many billable hours. And one day, after a really good session that may or may not have included calling me out on my bullshit, I saw something differently.

My doctor said that she thought that I had PTSD. Post-Traumatic Stress Disorder. A disorder many cancer and chronically ill patients actually suffer from. (The stabbing needles; the time they literally cut my throat open and took my thyroid out while I had nightmares on the table...) 

I had all the symptoms: depression, anxiety, fear, disassociative behavior, lack of interest in anything except Sadie...

I had them all. And the relief flowed through me like it had when I was diagnosed with lupus and told that what I was feeling was real and it was not my fault. It is not my fault. Yes, people have it worse than me (so you've said) but this is my life, and it sucks sometimes. 

I started to talk about it with my cancer camp friends (First Descents, y'all) who had experienced exactly what I was going through and some of whom are still feeling it today. (Soon I'll hit you up for more FD money, but this is why.) They helped me to understand that I didn't have the life I did 2 years ago. And that I don't have the life my friends have today.

And while that may seem defeatist, it's also true. Like, extraordinarily true. I don't! I won't! I will not ever again, no matter how many vitamins I take or doctors I see. I never did. I just faked it until I landed on this sabbatical, licking my wounds and wondering how/why/dammit.

As soon as I started talking to my therapist--like, really talking with words that were honest, and stuff-- I began to feel a smidge better, and with that came purchasing items and Doing Important Stuff: buying a carrier to drag Sadie around the neighborhood, walking the dog, taking my pills, taking a tiny bit of an interest in living till I'm 40 (which I have probably never had an interest in because who wants to be in this much physical pain for that long?)...I got sick again. 

Really sick. Mouth sores in the shape of Very Large Plains States, like Montana and North Dakota. And there were rashes and fevers and two infections and it was all happening now, when my sister is getting married so very soon.

So I retreated. I cried. A lot. And I panicked. I said to my FD friend Hairband, I said, "I am going to ruin this wedding." And she said I wouldn't. And I won't.

See, this story doesn't have a happy ending, because I'm still working on that. I'm still trudging through the last couple of days of this illness, and then I'm gonna man up, get my hair colored and be a terrific (marginally okay) maid of honor for my best friend, my beautiful sister. I'll do the things, I'll get it done.

And I'll keep working toward what we call "radical acceptance." Acceptance that maybe, after 17 months, I still need to be at home, recovering. Acceptance that I made it through the rigorous disability process for a reason: state-mandated doctors determined I needed it to survive. Acceptance that these diseases and this hardship will always be a part of my life, and it will make it so difficult at times, that you won't want to go on.

But for now, I'm grateful I had people to tell me to get help when I needed it. 

And I am dreaming again. Of Kristie's wedding, in 5 days (!). Of a January spent in Los Angeles. Of my trip to Hawaii in December. Of my friends' annual ski trip. An FD reunion in 2014. And Erin's wedding in April (bridesmaid for the fifth time! 22 away from a movie deal, bitch!). And maybe a place in Brooklyn in the spring...

But most importantly:

Watching this love of mine, this heart that beats outside of my chest, go on and on.