i am sitting at the head of a table that is not mine, drinking a smartwater that is also not mine, in an apartment that is not mine and a mess that is, thankfully, not mine. it’s 3pm eastern time and though i am physically back in my own timezone, my mind is pretty sure it’s just noon and my body feels like it’s last week. i’m exhausted and swollen, ruminating on how redeye flights are not for people over 30 or maybe they’re just not for people who are managing a host of diseases, described, at best, as incorrigibly uncomfortable.

the delta employees back in california had bullied pretty much everyone who wasn’t flying business class into checking their carry-on luggage. my inclination was to ignore the warning that anyone with two large bags would be forced to check one at the gate if they didn’t do so before. instead, i approached the guy in charge of hustling away the luggage.

“i have two large bags,” i said, waving a hand toward my stuff, piled neatly in front of a wide airport chair, “but they both have medical supplies in them and i can’t check either one. i just thought i should tell you ahead of time.” he told me to rearrange the contents. “i can’t,” i told him. “it won’t all fit in that tote bag and i can’t check that anyway because it doesn’t close.” just put it all in one bag, he deadpanned. “i can’t,” i said again. “and i have to do early boarding anyway, so there will be room in the overhead bins when i board.” he stared at me for a moment. why do you have to board early? he asked, dubious. “because i have a picc line and i’m sick and i’m exhausted and my right leg won’t bend at the knee.” my voice was strained and infected with weariness and a bit of anger. he shook his head, whatever.

i returned to my chair and watched gate number 40 fill up. feeling judged after my pre-emptive luggage strike, i tried to stop the mounting resentments about being questioned because i have invisible disabilities. these are old narratives, i thought. you don’t really know what other people think and anyways, it’s none of your business. just take care of yourself. just worry about you.

a woman in her late 40’s saddled up to me. i was crabby and hiding behind my face mask. “are you just trying to avoid getting sick,” she asked, “or are you actually sick?”

“i am actually sick,” i said.

“oh…” she squinted at me. “what’s wrong with you?”

“everything.” i lowered my eyes and told myself that instead of berating myself for being so dramatic and unfriendly, i should be proud that i didn’t engage her curiosities.

the guy called first-class and business class. i watched louis vuitton keepalls and briggs & riley upright duffles glide past me. i waited for pre-boarding to be announced. the guy glared at me as i dragged myself down the jetbridge.

after struggling to get my suitcase into the over head bin, i settled into my seat, arranging everything, putting in earplugs and pulling the oversized hood of my sweatshirt up and over my entire face. my goal was to get to sleep before take-off. i was just about there when the middle-seat, placeholder squeezed into the row. he had doused himself with drakkar noir. a moment later, i smelled vick’s vapor rub. i peeked out from under my hood and watched him slather it on his skin. once he finished, he found his place in the row, elbows out as if he were about to wrestle a soccer ball away from a pack of junior high players. i couldn’t sit back in my seat. his left arm was there. the middle seat sucks, i told myself. where else is he supposed to put his arm? the noxious smell of his cologne infiltrated my charcoal face mask and i squirmed around my window seat with a headache, trying to find sleep. that’s when mr. noir started hacking. i quelled my urge to panic. if i could smell his cologne than surely his plague germs were also making their way through the sides of my mask. why don’t they make varied sizes of these charcoal masks? i wanted to know. maybe i should have just stuck with one of my size small, japanese masks, the ones that make me look like sub-zero from mortal kombat. i weaseled in and out of sleep for four hours. i began to imagine myself turning into the stay puft marshmallow man. i dreamed of nothing.

when my plane landed at 5:30 something in the morning (read: 2:30 am, pst), i was actually dead to the world. i clumsily tried to pry my swollen feet back into my boots, which are a half size too big. by the time we got to a gate, i still hadn’t managed to get my right foot flat on the interior sole.

upon reaching JFK, i gathered my belongings and waited my turn to deplane. my heavy, spinner suitcase and ukulele were in the bin above me. i stood on seat 34c, arms extended overhead, tugging at the handle, twisting and turning beneath it, trying to shoulder the weight. a man over six feet tall stood impatiently behind me. if you’re in such a hurry, why don’t you help me? i thought. later i would think, why didn’t i just ask for help? but i already knew that answer. i’m too stubborn and too self-sufficient. i bumbled it down into the aisle in front of me. then i tried to plow forward, feet too big for my too big boots, with my suitcase and huge tote overflowing with smaller bags. i moved like a snail. i heard impatient sighs behind me. i cursed new yorkers. i wished i had less stuff. i repeated the thought, someday i won’t have to travel with a suitcase full of flushes and dressing kits, bags of prescriptions and glad press-and-seal (how i cover the picc to shower).

it took me just short of forever to get off the plane. i used the remainder of forever to awkwardly stumble through the airport, stopping two or three times to rearrange my stuff. the sign for the baggage claim and transportation hung over a staircase without an escalator. i groggily looked for an elevator. instead, i found a sign with an arrow directing me to a path that wove far to the right, around a security check point. confused, i entered the security area and stood there, dazed, for a few minutes. i backed up and got back on the right trail. i found the elevator outside, far from everything else. i pushed the button and waited. nothing happened. i asked an airport employee about it. i couldn’t understand his reply. the elevator doors opened and i thunked through. the employee got on. the doors shut. we sat without moving for a moment and i wondered if i should be scared, too medicated to be awake, and alone in a small space with a strange man. the elevator moved. i decided there was nothing to fear.

i stood in the cold, the sun not yet over the horizon, waiting for a taxi. there weren’t very many, which seemed strange until i finally got one and the driver told me that he would never return to the airport at this hour because of the traffic. but it’s just a little after 6am. what traffic? and then, suddenly, we were sitting in gridlock. my eyes felt heavy, my body still swollen and my joints like an octogenarian’s. i wished i could tesseract home, fold space and time to immediately be in my own house, in my own bed.

it’s now quarter to five. the sun has set and i’m still sitting at the head of someone else’s table in my silk pajamas. i remember the days when i travelled light, one bag, one pair of shoes, a book and a dropper bottle of echinacea. i remember when i could sleep anywhere. i remember when i used to fly on the redeye, land somewhere across the country and dive into my day. now i just write stories about the complexities of travelling with my visible haul of medical crap and my invisible disabilities. soon i want to write these same stories only they’ll begin with the words, “i remember when…”



November 25, 2012

you probably hate hearing about other people’s dreams. i’m 50/50 on that. it all depends on the dreamer’s ability to recall details in a timely and succinct manner. usually, we amble through the details, leaving our listener bored and possibly even annoyed, while we’re unable to shut up about this thing that happened. no wait! this other thing might have happened first. i’m not sure! i can’t remember! never mind. what happened next was…

i woke up from a dream in which i was starting over and left without many options. i had chosen to move in with an old friend, a drummer, who was living with a bunch of early 20-something musicians. surrounded by kids in flux with side jobs at coffeeshops, i was both fascinated and lonely. i had this question in my mind the whole time, “do i move forward and not revisit the past or is it possible to just dabble a bit in my old life and still move onward?” the past felt easy in some ways. the familiarity was like slipping on an old coat, remembering how warm it kept me once only to put my hand in the pockets, rediscovering the holes there that let all my spare change fall out as i walked. i decided that i wouldn’t engage my old patterns, the lost person i’d been. i chose to take a different route forward. i felt scared. i felt afraid i might fail, but i couldn’t see myself not at least trying.

i’ve been out of town, on “vacation,” on the other side of the country. i’m staying with my partner’s family, though he went home yesterday. i feel ready to sleep in my own bed, play with my animals, peruse my own refrigerator. it’s hard to write at someone else’s house. i generally wake up with routines… kind of. feeling like shit or having intense pain isn’t ever part of the plan but it’s certainly part of my reality. so i guess i should say, i wake up with intentions. i like to make coffee (yes, i gave up giving it up. i’ve chosen to toute it’s health benefits. plus, that $300 i spent on genetic testing that told me i was exactly 50% asian and 50% european with a predisposition for small breasts and lactose intolerance, that told me that i metabolize caffeine at the highest rate possible. so… suck on that coffee abstinence) and sit on my couch in silence while i write. after a little while, i turn on some music, something without lyrics or with words in a language i don’t speak so that my own words come to me. today is the first day in a long time that i have woken up alone in an empty house and been able to sit by a fire (hell yes!), sip espresso (made by a magic machine where all i have to do is get a mug out of the cupboard, stick it under two nozzles and push a button) and cozy up to my laptop. there’s a ticking clock. soon, the family will return from church and we’ll go eat swedish pancakes somewhere. i’ll compare them to my mother’s. they will pale in comparison, unless i count the last batch she made me while at my house. they were fine, mom, but we both know that you tried to battle my pan instead of working with it.

so this post, this is a dipping my toes in the water post. i’ve been exhausted, more than feels reasonable or logical, but exhausted nonetheless. i’ve had trouble keeping any energy level other than “off” up, but it seems like day-by-day i’m getting a little more stamina back. my body is recovering, my mind is too, and like all things that must be grown and curated, it’s taking some time. i’m an impatient person with a huge storeroom of patience. i find myself returning to the stockroom, moment after moment, pulling out reserves i didn’t know were there. that’s all i can do right now- be patient with my body, my mind and my situation and take the best care of myself that i can. i suppose that’s all most of us can really do.

with that, i’ll take my leave. i think i’ll feel a little silly if my partner’s parents return while i’m sitting in silk pajamas in their armchair, fireside with my empty espresso… it’s not like i ever feel silly. ever.

this is the part where i own up to everything, confess how truly hard this has been and how heartbroken i’m feeling about the past month, right? yeah, it is. and yes, all of that is true. i’ve stayed off the airways and kept a lid on, not just how i’ve been feeling emotionally, but also how i’ve been faring physically. i’ve been apprehensive to write about my experiences in and after my hospitalization. so much of what happened, of what went wrong, was unethical and very likely not legal. i’ve been sitting on this fence, a sharp and uninviting fence, where i’ve been trying to decide if i need to take legal action. if so, i didn’t think i should be writing anything on here. it’s not like there is such a thing as internet anonymity.

i am not the type of person who sees dollar signs in her eyes when something goes awry. in fact, though i love nice things (i am a taurus after all) i’m not the type of person who cares much about money. i guess we all want more money though, don’t we? i want enough to cover my basics (though my basics are a high standard, like clean food and responsibly-sourced supplements, things i think we all have a right to have). i do love/need a little extra for the clothing budget, but i’m much happier with a secondhand chloe sweater score than i ever would be staring at the price tag of that same sweater in a commercial store. if i have more money, i’ll spend it, but after years of accruing massive medical debts (not to mention groceries, and bills and everything else i couldn’t afford because i couldn’t work and i was irresponsible with my earnings) paid for with credit, i don’t spend money i don’t have. clearing that debt was one of the best things i’ve ever done. i felt like the 15-passenger van that had parked on my chest was airlifted off. so now, if it’s not in the bank or my wallet, i won’t buy it. alright, long digression. i care a lot about cash and i also don’t, but my point here is that i do not want blood money. the very notion of it makes my stomach churn. i can’t see how profiting from a legal recourse would be anything but that. i also feel incredibly responsible for taking action. i truly believe that if this can happen to me, it IS happening to other patients, and those patients could be dying. the bottom line for almost all corporations is money. if it’s not cost effective than there won’t be changes, even if that means shortcuts on lifesaving measures. so what is a sick, traumatized girl to do?

i’m writing about this, so it would seem that at least a part of me has made up my mind. keeping this in is also making me incredibly sick. years ago i had a brilliant therapist (who my mother thought was terrible because after every session, i’d call her up, angry about some breakthrough i’d had). she specialized in PTSD caused by medical trauma. who knew such a thing existed? not me. i knew that i suffered from post traumatic stress disorder from past abuses, but i hadn’t considered how painful the never-ending ups and downs of chronic illness could be to the psyche. this woman helped clarify something for me. the non-illness related traumas were over. done. in the past. my diseases and my broken body, i lived in. as long as my body continued to surprise-fail me, i was going to experience new traumatic events. after all, my neuro pathways had already learned how to process difficult experiences in a way that wasn’t so healthy.

for a long period of my life, i felt as if i was held together by sheer force of will. i trudged through my existence like a soldier in battle. i felt irreparably broken. i’d come up for air and find myself drowning all over again. “what is dead may never die” (a reference to a game of thrones‘ drowned god, not actually the television episode. this nerd felt it necessary to make the distinction between a book fan and a t.v. fan, even though i am both). it took me years and years to move through this. i went to post traumatic stress disorders rehab. i sat in those rooms feeling both akin to and different from most of the other trauma survivors. mine felt infinite (i’m sure theirs did too). i was sure that at any given moment, my body was going to collapse on me. hospitals and doctors would label me as drug-seeking and insane. they would minimize my diagnosed diseases and play up the idea that i was really a hypochondriac. i would not be treated, but would retreat to my apartment and nurse my wounds until the storm passed. i lived in fear that the other shoe was going to drop and i would be left crippled, defenseless, and begging my parents for help.

my body, my own worst enemy.

i broke away from my friends. i changed my phone number. i moved and tried to make a fresh start in washington d.c., where i pledged to attend the PTSD outpatient program at least 3 times a week (after two weeks, the other patient’s horrific stories depressed me and i stopped going). i found new doctors (on each first appointment, they acted like they had my number and knew how to effectively treat my autoimmune diseases. but suggesting the same medications that had already failed me caused me to mistrust their expertise). i tried to rise above my fears and my realities. i swore i’d be honest in all parts of my life (i was not). i made new promises to my family (i broke every one). i believed i could just step over my history and begin anew.

eventually, i got completely clean and sober (no more prescription drugs), therapeutically confronted my old, open wounds and managed to make all the changes i’d previously failed to do. i tattooed the word, “faith,” on my arm. i took the meaning from a quote i’d read once that said, “worrying is a lack of faith.” i believed that eventually things would work out. i now had great coping mechanisms for when things didn’t. by living honestly in the present, i was able to drop the narrative that my body was going to give out just when life got good. it still happened. i still got sick. i still missed weeks of work (all two days a week). i wasn’t healthy and i didn’t feel well, but i shed those protective layers, the ones that led me to believe i need something outside myself to survive… myself. i found acceptance, and with that, i found a kind of peace i had never known.

it’s been years since i made those changes. my life now looks nothing like it once did and that’s a huge reason why the last three weeks brought me to my knees. when i had to go back to the er to have labs done on halloween and they tried to admit me again, then decided to cancel my er registration, registered me as an out-patient, realized that they couldn’t draw blood from my picc outside the er (believe me, i told this to every single medical person i met with) and then re-admitted me to the er where they decided perhaps i should just stay overnight, i panicked. i left the house at 2pm to go to a doctor’s appointment. by 8pm, not only was i starving, but i’d missed one of my dosing times and i was anxious and exhausted. suddenly, i found myself terrified. i didn’t have my medications, my pillow, a book, anything that would get me through the night. i wasn’t ready for this. i had no packed bag. i had a purse with an almond apricot health food bar in it. when i got home from the hospital that night, feeling powerless and without agency, i realized that i was just reacting to situations. i was doing it in that old, familiar, horrible PTSD way. all that old shit, all the fears of my medical past, had resurfaced and were clouding my view. i wanted to cry, but i didn’t even know how to make that happen. i had cut the cord and detached from my feelings. i was back to simply surviving again.

i met with dr. j yesterday. i left my appointment with a better understanding of why i’ve been so sick since my last treatment cycle. in short, the sepsis not only knocked me back, but the antibiotics used to treat the sepsis, opened up colonies, releasing spirochetes and protozoa into my bloodstream. there was no protocol in place to kill them after that, so not only did the intense antibiotics send me into a colossal herx, i also started to lose my grip on the immune capital i’d been building. my immune system went haywire, my nerves frayed again and the inflammation i’d been working so hard to extinguish, came back in full force. for the past eight days, i’ve been struggling with my legs, unable to walk significant distances, stand for more than a minute or two, or sit without shifting about uncomfortably. “you’re not back to the beginning,” dr. j said to me yesterday. oh my heart. it doesn’t belong down at my knees does it? i’ve been pushing forward, moving toward the horizon, willing to accept all discomfort and pain that’s accompanied my progress, and in one fell swoop, i plummeted backwards. a lot of damage was done. my treatments are on hold until i can stabilize again. after that, i just have one or two more cycles of iv abx, so really, i am not starting over, but it feels like i’ve lost months of some of the hardest work i’ve ever done.

i will push on, believe i’m getting better and keep following dr. j’s orders. i’ll rest until i’m well enough to resume my tick-borne illness treatments. i’ll find a new therapist who can help me unpack this onset of PTSD. i will put one foot in front of the other until i reach the end of this road. i will get well. i know that i will. but now i have a lot of emotional work to do that i didn’t anticipate. i have to re-process this experience, acknowledge my psychological pain and treat it with the credit it deserves. even during the time i’ve been writing this post, some healing has transpired. this has sucked. it hurts. by stirring up a past that i thought i’d sufficiently sorted through, i’ve started to indulge old thoughts and behaviors. i don’t know if people in my life are treating me in the same ways that they did before i started transforming my life six years ago, but it feels like they are. is that a distorted reaction? maybe. probably. but is it how i feel? absolutely. and that feels awful. the truth is, i am not the same person i was. i may have felt like i survived the sepsis incident and collateral damage by the same sheer force of will i used to survive my past, but i don’t have sepsis anymore and i’m not getting sicker, i am getting better.

will i take legal action? probably not, but i’ll definitely do something (i don’t know what) to try to change things. no one deserves to be (mis)treated the way that i was, but i don’t feel like i’m emotionally ready to put my experience out there for hospital administrators and lawyers to pick apart. i can’t go through that right now. i have my health, mental and physical, to take care of and that trumps my overwhelming sense of obligation to confront a broken system. that’s going to have to wait until i’m not feeling so vulnerable.

dr. j told me that he’s had very few patients go through what i have. like one or two. so if you’ve been keeping up with my story and you’re undergoing iv treatments, please try not to be scared that you’re going to join my club. true to form, i’m a statistical anomaly. thank god for that.

not all of my blog posts are as confessional, deep or revealing as this and writing about this has already helped me step forward. thank you for bearing witness. i haven’t been getting the kind of support that i need to feel safe and sane, but i’m responsible for finding that help. writing has been my outlet and even though this is highly public and personal, sharing this realness is, in and of itself, transforming my current emotional state. i’m not worried and i’m not lacking faith. i’m sad and a bit bewildered and that’s okay. i can own that. what i can’t do is keep silent. that’s the shit that really kills my spirit.

take a listen to the song, in an aeroplane over the sea?

short stuff.

November 2, 2012

i have five open tabs that read “add new post.” they’re all poorly constructed, ambling and unfinished things i’ve tried to write about the things i’ve been going through with my health lately. i’ve realized that i’m just not capable of putting it down, translating my experiences with words. i can’t do it right now. i’ve fallen in a hole of illness, institutions, red tape, ineptitude and depression.

so here’s the gist of what i want to say:

i hate our medical system.

i’m frustrated by doctors that don’t listen to me and instead of addressing my concerns, they try to dump me off onto an emergency room that’s not equipped to deal with my case, to deal with me.

i feel traumatized by the last two hospital visits i’ve had (i had to go back in on wednesday and they wanted to admit me, which i refused. as it turns out, i self-diagnosed properly. i was having an allergic reaction to the iv rocephin. had he only listened to me, the local infectious disease specialist who works with the hospital could have figured that out at my follow-up appointment. alas, he shuttled me off to the er.). i spent years, so sick i could hardly stand, being told by medical professionals that everything was fine or that my problem was such-and-such, when they really didn’t know what was wrong. i felt voiceless and disempowered, though i continued to advocate and fight for myself. in spite of my understanding of my body, my diseases and my treatments, i still get treated as though i’m crazy. that has opened some old wounds for me.

i’m supposed to be at the ilads conference right now. i want to have just finished the last session and be scrounging around boston for dinner. but i’m not. i’m here, on my couch, feeling frustrated and sad. but like everything, that will pass.