6/24/16

One Year

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

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

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

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

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

6/2/16

Tooth & Beauty

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

4/12/16

Coming Out (of the Quarantine)


Time slows considerably when the days are aimless and the lights fluorescent, the only activity punctuated by the rounds of the medical team. I wake up and the sun is not out, not yet; there is only the nurse’s aide, smiling at me, talking about her night, all while I am slack-jawed, barely conscious or amiable after only a couple hours of sleep. She takes my blood pressure and sticks a thermometer in my mouth. The pulse ox is slipped onto a finger while blood is pushed from another callous, unwilling, unwanting fingertip. The machines beep at different times, a cacophony of sound and stimulation that wakes me for good. Beep, beep. The vitals are taken, the numbers are jotted down.

The nurse comes to administer pills and insulin. To change the IV drip. To hang a bang of antibiotics on the pole and watch it drip, satisfyingly, into my veins. I taste the saline flush in the back of my mouth. I don’t know the body enough to know how this works; I only know the taste is satisfying, perhaps queuing me up for a push of IV painkillers. This does not come, though. I am not in pain enough for that; I could push it, ask, and sometimes I do, but I don’t need them. What I want is their ability to crush this time into a cube, something I could pocket and look at later, weeks later, when I was home and finally awake.

I wait for breakfast, I wait for the nurse to come correct my insulin dose, I doze off. I wake up to people touching my body; to me, half asleep, giving one word answers to medical questions that require paragraphs of explanations. This helps nobody. My infections are serious and deadly and it is only luck that has saved me. After lunch they tell me this. At dinner I push food around my plate and wait for the Xanax to put me to sleep.

After ten days I am released. I feel no different from when I was admitted except I am delirious with sleep deprivation, so actually, everything feels different. I arrive home on a Thursday and bolstered by steroids and the six-hour IV antibiotics, my sleep does not come. It arrives in short bursts; a ten minute silence is followed by fifteen straight hours of staring at my phone, not understanding logic, unable to process the dozens of articles I am reading. My younger brother tells me, days later, that I tried to drive off to get candy; I don’t remember this, or fighting him for the keys, or telling him I thought I was going to fall down the steps and die.

One sleepless morning, I leave the house while my parents sleep. I pull on snow pants and boots and the magic of light rising over snow crystallizes before me. Hello, earth. I walk down the path, intending to make my way across the street and to the lake that lies there but instead I slip. I fall, hard. My head smacks back against the pavement and I see constellations in my vision. FUCK. I do not scream or rise in anger. I lie there, the headache quickly filling my head, the pain like boiling hot water aching to escape through my eyeballs. I debate calling my dad. I understand he will find me out here, prone, his nearly 30 year old daughter flat on the pavement, and I decide the image of that might be too much for him to bear.

No, I realize. It’s too much for me to bear.

Six months prior, I lost my ability to walk. It had began with falling hard, like this. First up. Then down. I was weakened. I could walk. Then I could not. I held onto my mother and the wall at the neurologist’s office. He admitted me twelve hours later, thinking it was a degenerative neurological disease.

I had just survived a systemic crisis in the ICU in UCLA; now I was home, recovering, improving, across the country. I was supposed to be walking forward and then back, eventually, onto that plane, to graduate school and a new city.

Instead I spent four days inpatient. This time I got all the drugs I wanted. They scanned my spinal cord and brain and did not find nothing, but did not find enough to conclusively agree on one diagnosis. I was relieved, then confused, but mostly stoned. I was so stoned. I understood IV drug users. The way the morphine floated into my veins, the first couple seconds of feeling, were the greatest of my life. An absence of the physical pain usually delivered by lupus and a wrecked body. I didn’t need half as much as I got and yet I kept asking for more.

They moved me to an inpatient rehab center where nobody was dying, but nobody was young. I was the youngest patient by miles; a distinction I’m used to but thought I was running out of holding. On the inside, the IV pain meds stopped and so the withdrawal came in, strong and swift. The headaches, the lifelessness, the depression so acute I could barely swallow without first considering if hey, maybe I should die first.

On the inside, I spent three hours a day in therapy, trying to relearn how to lift my hands over my head. How to use the toilet by myself; first how to actually do it, and then how to gain enough points with the staff that I was cleared, medically, to take myself to the bathroom. This was the greatest injustice (besides the food). I had to pee, often, but this required the help of a nurse or an aide, and it required pushing the call button, which woke my 87 year old roommate, Margo, and generally annoyed everyone. It was so banal, the most banal of banalities, and yet it caused such a fuss. I couldn’t believe the melee, and it happened every time. After a few days, I started sneaking off, as surreptitiously as one can be in a wheelchair, to the bathroom. But even with the modified toilet, the extra arms and extensions, it was so, so hard. It felt like the most physically exhausting thing I’d ever done on my own, and I wasn’t a stranger to athleticism. I had run races and played long games of basketball. I’d thrown up from running. But this exhausted me like nothing else.

Downstairs, away from my bathroom, in the depressing gym full of resistance bands and 2 pound hand weights, my relative youth shone. My personality came back; I stopped sleeping through activities and social worker interviews and got to actual work recovering. I Instagrammed it and I thought I grasped the surreality of my friends’ trips to the Hamptons and my summer at the Jersey Shore inpatient rehab hospital. I didn’t, then. I was merely surviving, with my pregnant sister shipping my nearly 3 year old niece to come see me every few days. Sadie decorated my corner of the room with stuff my sister let her pick out from the dollar store. A Hawaiian luau dancer hung above my band and heart stamped duct tape coated my computer and wheelchair.

I got back to feeling; feeling in my extremities returned, feelings in my brain, patched over by pain pills and Xanax, lit up again. I set simple goals and I met them. And then I tried to put on my shorts by myself and fell out of bed. A report was written. A fall risk bracelet, slapped on my wrist. I walked around the gym a week in and all the old people cheered. The therapists became friends. We decided to try the stairs. I fell. Another report was written. I hid my tears but my red face told the truth. My favorite physical therapist let me sit on the steps, like an inconsolable child, while I gathered all the literal and metaphorical strength in the world to get up to sit back down again. We would not try again for a few days.

One day, ten days in, I had a guest pass to leave for a few hours to go home and see family from out of state. Family I only saw once a year. It was arranged for me to do therapy in the morning with my mother, a nurse, there, and then drive home with her for a few hours. I had a travel wheelchair and help ready. That morning, I had an excellent session with the favorite physical therapist that I now had a schoolgirl crush on. I was showing off, making everyone laugh, feeling taller than I was, stronger than I was. The morning was just about finished when we decided to take a walk using my walker. My mom and my crushed-on PT stood beside me, chatting about my release in a few days time as I joked in the middle and strolled as if I hadn’t just worked my ass off to do so. We were headed for the elevator when I fell, mid-sentence, as quick as thunder.

A few trainers ran out of the gym and into the hallway. I could not stop crying. I knew they would revoke my day pass. I knew this would get Stacy in trouble and I’d already gotten everyone in trouble with all of my stupid falls. Stupid, stupid falls. I lay there limp as they guided me back into my wheelchair and back upstairs into my room. The social workers came. And the doctors who wouldn’t sign off on my leaving for one hour, two hours, three. I cursed and cried and raged. My mom begged me not to do the thing that I did which was to sign out of the inpatient hospital abruptly and strongly AMA: against medical advice.

To her credit, she supported me. I was to be discharged three days later anyway, Medicare having declared itself tired of me and my costly hospitalizations. They would not cover more inpatient care and so I had to leave after the weekend. What difference did it really make, I thought. My therapists came upstairs as they heard; one pleaded with me to stay, but Stacy just hugged me goodbye and told me to visit. I tried to make jokes but my voice was dead, tired, over it, the last straw drawn. This was not the triumphant exit I planned. This was not the goodbye I’d envisioned. With my Rocky moment dead and buried, I let my parents help me into the car and I slip away.

--

And now it was winter again. I had spent all of August and September strengthening my muscles. I fell, so many times. On driveways and in patches of gravel and on the sand, alone, beach chair banging against my chest as the others on the beach looked at me. I grew accustomed to the patches of my body turned black and blue. My legs gave out with  force and precision, knocking me flat on my back. At the time, I’d compared it to being hit from behind the knees with a cane. Or slipping on black ice.

The ice I was laying on was not black. It was just slick and I was just tired. I’d been in bed for nearly six weeks now and nothing was as strong as it was. I had no idea if I was as bad as I had been right before I lost it all, and I was terrified it was going to happen again.

Haltingly, I sat up and rubbed my head. The sky finally broke open in front of me, like the yolk in the eggs my parents had been forcing me to eat. I wasn’t hungry or happy or sad. I just wanted to take a nice picture of the sunrise. I got to my feet and traversed the sidewalk with my hand out, as if to steady me.

I mourned the last year of my life, nearly all of it consumed to illness.

My life was not fitting into the trajectory I had dreamed about. In fact, it felt more and more like it was flying further and further away. Parts of me broke off, parts of me hardened, parts of me opened more to love and to who I was. Two weeks after I got home from rehab, I came out as bisexual to my parents. And as I grappled with this long-hinted at, long-thought about discovery, I strengthened. I flourished in work and a new relationship. And yet it was all short-lived, all terminal. It ended as I landed back in New York, fresh from 8 days abroad, exhausted, bone-tired, and invariably open to the two bacteria that invaded my bloodstream, that spiked the fevers, that caused the hospitalization, that led to the insomnia, that ended here with me, struggling to walk up the path, back into bed.

Had I really lost another year? Were these years that I kept referring to as lost really lost? No, I thought. They contained great beauty and triumph. I’d seen my first niece take her first breath; I walked through mosques in Istanbul three months after rehab. I had experience, and love, and heartbreak and literature. It was all so painful and beautiful.

I slipped into the house unnoticed at dawn. My room, thought to be temporary six months ago, lit with the colors of the day, now fully realized. I fell onto my old flannel sheets and finally fell asleep.







1/31/16

So what now?

IMPORTANT HEALTH UPDATE!

So! I am still inpatient and will remain so until a procedure is done to put a PICC line (a port-type thing that brings medicine directly into your veins.) I should be released by Wednesday, but with the following MAJOR caveats.

I will remain on intravenous antibiotics, given through the PICC line, until the end of February, depending on my blood work. I'll get two infusions a day, 12 hours apart. My mom will administer it and I will learn to as well. 

I had plans to travel and move but for now, I will be moving back in the apartment above my detached garage. I turn 30 midway through treatment and am looking into placing tequila directly into my tube.

I'm on a patch for the pain for the time being. I can walk and play with the kids and push a stroller but I can't work out  in the gym or any place crawling with bacteria and mold. I should be in a bubble! 

Important to note: I am NOT contagious  and your kids probably won't get me sick, unless they sneeze directly into my bloodstream. Still, please avoid me if you don't believe in vaccinating yourself or your kids. (Also please vaccinate yourself and your kids.)

This infection (double whammy of staph and strep) should have killed me and would have if I hadn't heeded my friend Bones' advice and went to the ER. The origin of the infection is still unknown but my major organs seem to have missed any damage, so yay. I am really lucky to have caught it in time, and although this recovery will SUCK, I know it could've been so much worse. 

Thank you for your love, support, and emojis. I should be released from the hospital by Wednesday. ❤️💙

1/30/16

Ways I Have Annoyed My Nurses, Part One

I have new respect for the position, and you should too, as I am the Patient from Hell.
Yet I look so innocent...

  1. Reached over my IV pole to get the pretzels I accidentally threw out, leading to the IV pole crashing to the floor and everyone thinking I'd fallen out of bed and died
  2. Tried to follow them to a code blue because I really want to go to med school
    I've watched way too many episodes of ER. I feel like I could help!
  3. Ask them to braid my hair because they looked bored
    I dream of an enchanting fishtail braid, but my dreams have died.
  4. Asked for ice and then immediately spilled it on the aide's shoes.
    Is it too late now to say sorrrrry?
  5. Escaped my room and went to the gift shop to buy magazines and salt & vinegar chips
  6. Tried to pay for pretzels in the vending machine with Icelandic money and almost broke it
    My nurse lent me a dollar fifty.
  7. Blasted D12's Blue and Yellow pills after getting morphine
    Horrifying video TK
  8. Continued to survive.
  9. Yelled "Nine lives, bitches!" after a gaggle of nurses and doctors outside my door remarked upon my survival of two dangerous blood infections. I'm basically Leonardo DiCaprio in The Revenant, NOT TITANIC. (Wuss.)

Wish the ladies of Mehandru 5 luck, as I am definitely here until at least Monday. And please, send them some flowers on my behalf. 

Bergin OUT.

1/28/16

Streptococcus? More like JERKOCOCCOUS!

Hi guys. It's 4:30 am here on the East Coast, and I am reporting to you live from Jersey Shore University Medical Center in Neptune, NJ, home of questionable meals and workplace for the hot young nurses of Monmouth County.

It's been like five minutes since I made my 2016 resolution not to die this year and I've already almost broken it, goddammit. I'd assumed once I stopped eating an average of 9-14 bagels a week, my body would recover.

Unfortunately this turns out not to be the case. Instead, I am battling a serious bacterial infection, which is only cool for its' novelty. (As in, I haven't had one in months!) I guess my body knew I was bored of my usual hospitalizations for lupus and diabetes and decided to throw me off a bit.


Instead of my usual staph or MRSA, I have an infection called streptococcus in my blood stream. Bacteremia. This is the bacteria that usually just causes strep throat. But not for me. Because I don't do things half-ass. (Unless those things are homework, working out, or writing.)


My body goes BIG when it comes to infection. So the streptococcus bacteria is floating around in the old bod, like a murderer on a lazy raft in swim trunks, flowing through the veins of MY LIFE while I desperately cling to my IV pole as if it's the last life preserver on the planet. (Seriously. That's my vision of my infection. Just floating through the Runaway Rapids waterpark of my broken body. WATER SOOTHES ME, K?)

Here's what's going on, so I don't have to repeat this to relatives or friends or the press, or President Obama, should he become transfixed with my story of survival and want to hear more about it. Sorry, B.  You gonna have to read this shit like everybody else.

  • So, I have the aforementioned streptococcus in my blood, which is dangerous AF.
    My mom helpfully told me that strep in the blood from pneumonia is what killed Jim Henson! Thanks, Mom! If Kermit's dad can bite it from this, how do I stand a chance? And what will be my legacy? Dumb Instagram photos of dumb nature with terrible hashtags? UGH.
  • I almost didn't come in to the ER because of laziness and hatred of leaving my bed, but I had a terrible feeling that I was sicker than anyone thought, including my doctor.
    I'd been experiencing high blood pressure and heart rate, along with four weeks of fever. My fake doctor, a 4th year med student and one of my best friends from First Descents, threatened to kick my ass unless I went in. 
    She legit saved my life. Dammit, now I owe her something!
  • I was OK when I got in, but then the blood cultures showed bacterium in my blood stream. I immediately googled it to find out that the type of strep I have is life-treatening. Group G is also responsible for those flesh-eating deaths, you know? The horror stories you hear about on the evening news and read about on Web MD at 4 am in a panic? No?
  • I felt very reassured after Googling it. 
  • The infectious disease doctors let me know that I could be here for 7-10 days, and on intravenous antiobiotics for 4-10 weeks if the virus has gone to my heart or done damage to any other major organs.
    When told this, I had a bit of a fit--by which I mean I sighed heavily and rolled my eyes and told them I have Hamilton tickets. Nothing is coming in between me and Hamilton. Even if I have to bring a visiting nurse with me to the Rodgers theater, I AM SEEING HAMILTON.
  • The team is currently scouring my body for a source of infection, which means I've been felt up more in the past two days than in the past two months. And no, guys. You cannot trade lives with me.
  • The source of the infection remains unclear and I am currently undergoing a battery of tests to see what could be causing it. 
  • One possible explanation is the Harry Potter tattoo I got in London. I pray that this is not true as it will give my mother even more ammo in her fight against my tattoos. Plus Harry would never do me dirty like that.
So that is where we stand as of right now. I hope to know more soon and shall update all six of you as promised.

Thank you, as always, for your love and support as I attempt to survive a week in the hospital without painkillers.

Love,
Kelly

12/30/15

Hamilton and Survival

A few days ago, maybe a week or two, I began doing the NY Times Crossword. I got my grandmother the Weekender for her birthday and I did them occasionally, but now I had downloaded the app and paid the subscription fee. I felt elated when I could fill out a Monday or Tuesday without much or any Googling. I felt like a genius the day I finished a Wednesday without help. And I felt like an ignorant fool when I got stuck, a waste of space, my lack of knowledge all my fault simply because I have chosen, in many instances, to not do the work.

I remember the most feedback I had as a kid from teachers or parents or coaches was that I had potential that I squandered. And really, that’s the worst sort of thing that you can do. You’re stupid, fine, you don’t know any better. You’re a terrible writer, you don’t write. You can’t sing, you don’t try to be a singer. But to know I could write and chose not to, out of fear or laziness or sickness, or whatever, to squander: this is worse. We are all complicit in our shortcomings and downfalls and I was willfully rejecting the advice I had been given since the 5th grade. That is shitty.

SO much of what will be remembered about this year or the year before and for most of my twenties is the progression of my illness, the degradation of my body. I read the other day something I had written at the end of last year, wherein I posited that it could probably not get any worse. And what a foolish and arrogant thing to say. Because of course it did get worse. Because of course it got so much worse! I got so much worse!

There was my stint in California, where I landed in the ICU, and realized all my time in California were only ever going to be stints as long as this was how my body felt and operated. If I kept being me, then my life would continue to be scattershot across the continental USA: places I spent time briefly before being forced to come home to New Jersey and recover, and then to relapse and recover. It did not feel like I was building a life. It felt like I was running out of steam.

I could not keep this engine going and then I finally faltered and fell apart in the most physical and metaphorical way possible: I was paralyzed, atrophied, broken. I fell, literally. I had so many falls, so many bruises. There was a moment when I was on the floor of my rehab hospital--this was July, not even six months ago--and I knew I had to call for help, and I knew it would be terrible, and the staff would have to write a report, and I would not be in trouble but I would feel in trouble, and I just lay there for a minute more, trying to steel myself and found that I had no more steel in the reserve. I could not brace myself because I had run out of ways how. And so I pressed the call button.

This time of year, especially this specific week between Christmas and New Years, always feels lazy and incomplete to me. My friends are away on vacation and I am always here, watching reruns of dumb television shows in bed. I consume an insane amount of media--probably more than I had in six months prior. I am sleeping all day and reading and listening all night. I am making promises for the new year. I am trying to believe in the reset button.

December always sinks me. I mean to look at the tree and inhale the scent before it is tossed out with the gift bags and wrapping paper and yet every year I do not. The last two Decembers I narrowly missed Christmas in the hospital, and yet being home and not sick is more depressing to me. It reminds me that there are things I could be doing that I am not.

I have been listening to the Hamilton soundtrack and reading everything about Alexander Hamilton and Lin-Manuel Miranda. And for both of these men, their eerie sort of premonition and feeling about an early death motivates them. (Read the New Yorker profile of Miranda for more on this. He thought he was going to die before his first play opened on Broadway.) This inspires me as much as it confounds me about my own motivations or lack thereof. If I am dodging death and illness, why don’t I work on things when I am not in the hospital? Why am I not writing the stories I want to write?

And it’s because that other illness that plagues me, the deep depression, comes and finds me as soon as the adrenaline of surviving has left me. So much of depression has to do with one refrain running through your brain: what would happen if I died? Would death be so bad? I wish I were dead. Maybe I’ll die soon.

At least this is the refrain that runs through mine as soon as I cut the hospital bracelet off. A slackening sets in. All the color is out of the balloons and I’m left breathing the dead helium floating in the room. Technically, yes, I need to rest. I am exhausted from the suffering and pain and illness but more I am tired of the come down from painkillers, the body unfolding itself into another barely pulled off survival. I can’t write, and sometimes I can’t read. I don’t listen to music and I don’t see movies. I can only sit through television shows that don’t challenge me. I can’t comprehend anything new; I cannot get out of bed.

I am living and yet it seem so much harder with each year. The traumas build up, stack in my brain like debris and I cannot shake them. I worry that they will tumble to the floor and I will finally cave in. But writing to me is survival. It is the only thing that will fill me out and up and I think that for this end of the year post, a thing I was sure i would be unable to write, I have to thank the Hamilton soundtrack and freestyle rap battles on YouTube and the elasticity of the language that I love to play with. This year is done, it is over, I have survived and I will endure another. I know I will. I do not want to die.

Recently a friend asked me if I am discouraged by another year of trying to fly and finding that I only became paralyzed more. I wondered if that is how everyone sees my life, as pitiful a narrative as can be. Even I do not feel that badly for myself. (OK, maybe sometimes.) There were as many beautiful moments this year as bad ones, and I’m going to try to remember the beautiful ones a lot more. Rooftop breakfasts in Istanbul, a new niece, shiny and red, my West Coast girls, the California sunsets, the first swim I could take in the ocean after I learned to walk again.

It could be worse. It can get worse. I learned that, this year. 

But I survived.

What’s next?