my writing life.

February 21, 2012

there’s a header that says “why am i writing this?” and if you click it, it gives some information about, well, why i’m writing this blog. as time goes on, and as i go deeper down the lyme disease rabbit hole, i have new reasons for writing and i’ve realized different purposes that this blog serves. some of that service is for me, some for friends, and some for people i’ve never met. i want to tell you how i came to want to share this information with anyone who wants to read it.

when i was a kid, i wrote constantly. i had sanrio diaries with locks. i had special pencils whose only purpose was to put words down on the pages of a book i hid in the top drawer of my dresser (yes, not a clever hiding place). in the fourth grade, i filled a spiral notebook with poems and gave it to mr. h, my favorite teacher. in the margins, he drew wonderful illustrations and when he tried to give it back to me, i told him it was a gift. i wanted him to keep it. fast forward 20 years; my mom runs into mr. h in a grocery store and he tells her that he still has it and that it was one of the most special things he ever received.

as a teenager, my journals and i were inseparable. also, there was always a minolta srt202 in tow. i grew to have a favorite type of blank book (which i bought and probably sometimes stole from barnes and noble) and a favorite pen. this pen, i would later figure out, was neither waterproof or archival, a sad discovery. my friends and family expected me, at any given moment, to disappear to scribble something down. i photographed my teenage delinquencies and wrote about the heartbreak of unrequited love at 14. it was in high school that i started to wax poetic (no, really. all my prose was like dense poetry) about how my experiences were not unique and if i was feeling it, someone else, somewhere else had too. this philosophy developed into what i felt was a call of duty- to expose my innermost self in a written and public arena. i had a column in the high school paper and i loved to be at the center of moral controversy. my column provoked two kinds of mail- threatening letters and the oh-my-god-i-am-not-the-only-one mail. both stoked my fires. i kept writing. i kept revealing. but then i graduated high school and found myself sick and floundering in an expensive private college. barely able to keep my head above water, i stopped trying to stir every pot i saw.

in my early 20’s, i got into a very specific niche of performance poetry. i created a chapbook called “for love” (and i think i used it for one of my senior theses. oh yeah, i later reenrolled in a university). my photographs and art work were inexpertly cut and pasted between poems about the internment of japanese americans and meticulously crafted pieces expressing my anger over things like misappropriation and institutionalized racism and sexism. on the back cover, under a black and white self-portrait, it read:

i write about my experiences… these stories are never easy to tell… the complexity and depth of the silence surrounding us all are immense, and at times feel impenetrable. it is through honest contemplation of my life, that i have come to realize how difficult it is to talk about the hardship, sorrows and trials we have undergone… i write for unnumbered reasons, in part to bridge a void i once felt- to speak from a place that isn’t about shame or regret, but instead is from, and about, living and love.

once again, i thought i was pushing the envelope. i felt i was creating a narrative of my experience that needed to be heard. i was asked to be the third member of an already successful spoken word group. for the first time, i got paid to write and perform. i loved it. since then, my incredibly talented compadres have published books, collections of their poetry, and continued to move forward, sharing their words with the world. their success brings me joy. we’re not close; we hardly talk, but i’m still proud to have been on stage with them.

my writing went underground as my diseases progressed. i wrote about dis/ease and my decaying body. i detailed my depression and mounting insanity. i shared this writing with lovers, but no one else. during my darkest years, i shared it with no one, feeling so isolated that i believed no one in the world could understand what i was going through.

when i came out on the other side of that, i couldn’t write. words had left me. i was stuck writing the banal stories of what had happened in my boring day. i felt like all i could do was journal, and that both saddened and embarrassed me. a few years ago, i started a blog, just verbose entries about things i bought, stuff i did in brooklyn, and things i sewed, made and altered. it wasn’t terrible, but it didn’t have much purpose, save the fact that it got me writing again. i started writing a memoir about my japanese american grandfather. it wasn’t perfectly constructed but it was something. and then, in one of three set experiences i think you have to have to become a real “new yorker,” my apartment was robbed, my g5 computer was stolen, and with it went the memoir. my writing screeched to a halt.

my partner and i left brooklyn for a house in the suburban woods of the hudson valley. now, without three flights of stairs inhibiting my ability to leave my living quarters, my life became an involuntary, inescapable series of doctor’s appointments, physical therapy, talk therapy and complete misery. it was all i could do; i was sick and stuck managing it fulltime. i was in agony, physically, mentally and spiritually. i was fighting to keep my health insurance and most days i could hardly get out of bed, but i did it so that i could make my doctor’s appointments and hopefully keep my insurance. if i had to leave the house for any reason, like to go to the grocery store, i considered that my day. i could not do more than one thing each day, if even that. we got a new couch at christmas and by the end of winter, i had made a permanent dent in my shape.

sometime in the late spring or early summer,  my rheumatologist dismissed the typed list of symptoms i was having as something i should “talk to a psychiatrist about.” i saw a new rheumatologist who had asked me if i had been tested for lyme disease. “yeah, i don’t have lyme,” i said. he asked me if i was sure i had been tested. i thought i had. i disregarded the question. the new rheumatologist pushed on a series of painful spots on my body and diagnosed me with fibromyalgia, an incurable disease that disproportionately affects more women than men. i was so grateful that he had listened to me and looked for an answer that i wrote him a thank-you card. it’s still pinned in my file. that question of lyme disease stuck in my mind. lying in my couch dent one evening, i watched under our skin, the documentary about lyme, and the question came flying back. had i really had a test for lyme? if i had, it was in 1999. i’d had tick bites since then. i could have been infected after being tested. i remembered my doctors at the mayo clinic saying “this is not lyme,” and i believed them. i poured over my records to see if i could find a test for lyme. i couldn’t find one. i called my rheumatologist and scheduled an appointment.

“i went through my records and i couldn’t find a test for lyme disease. can you give me a requisition for a western blot test?” i know, this isn’t the first time i’ve written about this in this blog. i apologize for the repetition, on the off chance that you’ve read this before. the test came back with one band marked reactive, 41 kd igg. this marker indicates the presence of spirochetes and is the most common reactive band for lyme disease, but can also indicate syphilis or periodontal disease. i called my doctor’s office back to schedule a visit to talk about my lyme disease, which i was certain i had. the secretary thought i was crazy for interpreting my own lab results and determining this single reactive marker meant i had lyme. in spite of her protests, i scheduled an appointment. then i started this blog.

i write here because i have to.

i spent half of my life undiagnosed, sick and miserable. over the years and years of being sick, i blamed myself for so much of what was wrong. the medications prescribed to treat my autoimmune diseases never really worked and so i was constantly switching meds. when the doctors told me that my labs looked better but i still felt awful, i looked to my life for what the problem was. i changed my relationships. i ended my chemical intake. i modified my diet. i moved out of the toxic big city. i switched all my bath and body stuff to expensive natural, chem-free products. i bought ceramic knives. i only ate organic food. i started juicing. i meditated. i practiced yoga when my body allowed it. i gave up gluten, dairy, citrus, soy, nightshades, coffee, and an assortment of other foods i was told might help my health improve. i did everything within my power to get well and it didn’t work. only after i had exhausted all the possibilities that were within my power, did i stop blaming myself. i was doing everything right, so why in the hell was i still sick?

the things i write about are often highly personal. sometimes, when i’m talking to a close friend about what i’m going through, i think, “i can’t share that on my blog.” then i remember my philosophy growing up. i know that if i’m going through this, so is someone else, and maybe they need to know that they are not the only one. i have fears about disclosing the ways lyme disease has affected my mind, created periods of severe (and sometimes mild) mental illness, and caused emotional instability. it’s really hard for me to write publicly about my past substance abuse. and by really hard, i mean, i erased that line three times before deciding i needed to leave it. but i am not ashamed of who i am. i am not ashamed of how i came to be the person i am today. i often find myself telling my friends that we are all products of our own experience and we are all surviving the only way we know how.

i write the stories of my survival.

there is a part of me that is terrified by the idea that you might judge me for this, for any of this. i’m afraid that my partner’s family might read my blog and think i’m a terrible mate for their son. i worry that the information i write about my treatments could someday be used in a case against my doctor. sometimes i am filled with fear… and when i am, eventually, i remember that the only way i can stare down fear and win, is to write it down, tell on it to someone else, take away its power and name it for what it is: fear. without me, fear is absolutely nothing. i’m its fuel and i don’t want to feed it anymore.

i am doing what i have always done. i write. i tell my truths. i divulge private details that cause me some discomfort. embarrassed by my despicable grammar, i keep writing. i survive being embarrassed. i survive my fears. but i will not survive if i am silent… and so i write.

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i wish my absence was due to the exhilaration and freedom of feeling less pain. alas, the decrease in physical torment allowed me to focus on more… cerebral issues, like how dysfunctional my mind felt and how my racing thoughts created a track that i ran round and round on. i bought the ticket. i’m taking the ride, it’s just that sometimes i can’t stand the places the ride takes me. some of that is my fault. a worn-out welcome with any mood altering substance makes taking some of these drugs incredibly challenging. i have found myself obsessing over things like cigarettes and coffee. which, for the record, i had given up both of a while back. however, unable to make my own choices about what medications i’m taking and when, i discovered that i still want to control my ups and downs, at least to some degree. that meant that i wanted to consume something off the menu. the beast woke up and it was hungry. so this past week i have been off lion taming, too distracted to sit down and string words together to form sentences that i could possibly allow anyone else to read. hell, even this cryptic description of my last seven or eight days is so intensely personal that i kinda want to erase the whole thing. i won’t. either you know what i’m writing about or you don’t. and that’s okay with me.

through no fault of my own, i’m having trouble moving forward with my treatment plan. some of this is administrative bullshit, like having to climb up the ladder in the nuclear medicine department at westchester medical center just to get the paperwork faxed to my doctor so that i can have a HIDA scan and a brain spect scan. yesterday while talking to someone in nuclear medicine i was told that they didn’t have enough information to warrant approving the brain spect scan and that they had to get some clarification from my doctor. “what do you need to know?” i asked. “i know my own case pretty well. i have all the medical documentation in front of me and i could probably give you that information myself.” i went on to tell him that i have a history of seizures and that we’re trying to get a clearer picture of what’s actually happening in my brain before i can proceed with intensive and invasive treatments for chronic lyme disease. “oh, chronic lyme disease,” he said, “well those are good enough reasons.” after that, he was kinder and promised to fax the necessary paperwork to get this ball i’ve been trying to push for weeks rolling.

it just seems a bit ridiculous that i’m the one calling testing centers, leaving messages, calling my doctor’s office, leaving messages, following up to see if they’ve spoken to each other, then emailing to see if my information has been received. as the patient, i feel like this isn’t my job and it’s sucking up all my time and energy- commodities i’m critically short on. i’m trying to get blood work done that doesn’t have the proper insurance codes or even the right testing codes for the state i’m in. yesterday i sat at the lab for three hours waiting for clarification on what the lupus b panel test was because there was no new york code for that test. the phlebotomists were a bit pissed off at me during hour number one. by hour number two, they felt sorry for me, but didn’t want me to leave because they thought the information would be there any second. by hour number three we were all watching some pathetic talk show about a woman who lost 40 lbs. before her wedding and they were telling me how much they liked my shoes. complimenting my new rag & bone booties? well, that’s a great way to get on my good side. in the end, i had two different blood draws and we couldn’t do the lupus b panel so we just drew a regular lupus sle panel. even though i just had that test run a month ago, i let them take my precious blood. i figured after an afternoon together, they deserved to feel some sense of accomplishment.

and on the dr. j front, we’re fine tuning my brain meds. apparently, a healthy brain allows you to sleep through the night without waking up every hour or so. my brain? maybe not so healthy. there are a number of theories on the subject of why we sleep, but according to the restoration theory of sleep, we need both REM and NREM sleep in order to reset our physiological processes, repair and revitalize our bodies and minds. part of why meth users are balls-out nuts, paranoid and prone to commit violent acts?  while using meth, and for a period of time following, they don’t and can’t sleep. without sleep, we start to lose control over our moods, ability to focus, impulsivity and, obviously, energy. but more interestingly, a lack of sleep can lead to increased pain. there’s got to be research on why that is, but i don’t feel like looking for it right now.  restorative sleep is a crucial part wellness for anyone, and for anyone trying to fix their chronic illness, good sleep is essential.

we’re also tweaking other medications to “decrease the irritation in the nervous system.”

the physician’s assistant wrote that i should lie horizontally for one to two hours prior to going to bed to allow any fluid that gravity is pulling to my legs to get to my kidneys and hopefully make it so i don’t get up from bed to pee every ten minutes. no, seriously- every ten minutes. it’s like geriatric times a hundred. sometimes i think of jerry stiller in zoolander,  but not because my engorged prostate is preventing me from going to the bathroom. i think of him because no one has to pee every ten minutes but my body thinks it has to go.

woo! this post contains a lot of information that you probably don’t want or need. good thing you get to choose whether or not you read it! i spent the entirety of friday afternoon bawling my eyes out about putting my cat to sleep. crying is exhausting! i’ve posted a number of times about how i can’t cry. well, that seems to be over. i was a snotty, teary mess. today my eyes are bone dry, puffy and the source of a good amount of pain. i blame this for the lack of focus in this post. i wanted to write because… even though i couldn’t muster up the skills to write something well, i don’t want to break the habit of documenting my lyme process.

this trophy ain’t plastic.

February 10, 2012

i promised myself that my next post was going to be about something other than my own treatment, like cistus tea or alternative (read: non-western) treatments for tick-borne diseases. i’m no stranger to false promises, but even when they’re mine, made to me, i’m not a fan. i feel i can make an exception in this case. that, and if i weren’t writing about this, i probably wouldn’t be writing today. today feels less like a writing day and more like a “peruse through the music collection to conjure up old memories” day. singing along to songs you forgot, the ones you used to memorize how long it took to rewind the cassette back to the beginning so that you could listen to it on repeat, brings a kind of joy and nostalgia that isn’t meant for every day. i revel in it when i can. my basking can resume right after i share my good news.

i’m just finishing the fourth week of my dosing schedule for the new medications that dr. j has prescribed for me. some of the dosages have stayed the same over the course of the past month and others have quadrupled. i’ve been skittering and uncomfortable since i went to d.c. last month. the medication changes have wreaked havoc on my delicate mind. amid the mess of anxieties and racing thoughts, i failed to notice the changes in my body. last night after i got in bed, feeling only somewhat haunted by my looming insomnia, i realized that my pain is so much less severe. it actually feels kinda miraculous. i still have arthritis; my joints still creak and crack. i still have all sorts of weird medical issues and aches and hurts, but the excruciating, constant feeling of my muscles splitting apart or the suspicion that my spine is trying to rip itself free from my back, those are gone. they’re gone!! i knew that we were trying to treat my neuropathic pain but i didn’t really know which pains were nueropathy. i had no clue that this part of my suffering could be relieved.

until last night, i think i was waiting for the bottom to fall out on this reprieve from my shooting, stabbing pain, from my numb limbs and electrically charged fingertips. upon further reflection, i realized that if the treatment is working that means that i do have a raging infection in my brain, fraying my nerves and damaging my nervous system. you’d think i wouldn’t need further proof of this, but when doctors have been telling you for years that your pain is somatic, that your sudden onset of psychological problems (that disappear after a few months without medical treatment) are just manifesting because you are a woman/girl at the age of  _________(insert number here), that there is no medical evidence that any symptoms you are reporting fit your existing diagnosis and thus, must not be real, it’s not easy to let go of that pathologization. i would tell my doctors they were wrong only to return home, stare my reflection down in a mirror and ask myself “are you making this all up?” in my gut i knew there was something no one was seeing, something my teams of doctors were missing. our medical system very gradually re-sculpted me. it planted so many seeds of doubt; i was wrong and it was all in my head. the week before i was diagnosed with lupus and a mixed connective tissue disease, i overheard my doctor tell a nurse that i was a hypochondriac. another doctor referenced “hysteria” as a diagnosis once used to name my condition. yeah. seriously. that fucking happened. and i have a bachelor’s degree in women and gender studies. i saw red, charged full force at the doctor, then came home, collapsed into a ball and cried my eyes out (i could cry back then). after more than a decade, it’s hard to maintain, even to yourself, that you have a disease, that you’re not hysterical or crazy, but that you are sick. i have been conditioned to doubt myself.

thank you, dr. j. you are a freaking genius. after all your work with aids patients, it makes complete sense that you would understand how to recognize and treat neuropathic pain. but my brain has trouble making sense of things. the fact that your treatment plan, at least for this piece of the puzzle, is working is beyond remarkable.

here i am, awash in a sea of run-on sentences, holding up the trophy of my first treatment victory. god, i hope i don’t drop it.

Blessing and Healing Chant

Just as the soft rains fill the streams, pour into the rivers and join together in the oceans, so may the power of every moment of your goodness flow forth to awaken and heal all beings, Those here now, those gone before, those yet to come.
By the power of every moment of your goodness…
May your heart’s wishes be soon fulfilled, as completely shining as the bright full moon, as magically as by a wish-fulfilling gem.
May all dangers be averted and all disease be gone.
May no obstacle come across your way.
May you enjoy fulfillment and long life.
For all in whose heart dwells respect, who follow the wisdom and compassion of the Way, May your life prosper in the four blessings, of old age, beauty, happiness and strength.

*****************************************************************************************************

last night, i was talking to one of my best friends about where i’m at right now. i am taking six new medications. while most of me feels fine, there’s this piece of me that feels like i’m about to crawl out of my skin. i can keep it in check in front of others. i can act normal. i can play nicely. i can… but i’m very silently freaking out. in ways, i am so rational about my approach to treatment. actually, maybe i’m just good at rationalizing, but i digress. logically i know that taking a fistful of pills intended to target my brain and adrenal gland is going to have side-effects and cause some uncomfortability. i can’t stop moving, multi-tasking, worrying about things i can’t control, and indulging my obsessive, list-making self. i can say that i’m scared. i can make my mouth form words that describe how i think i feel, but i don’t know how to just sit with my feelings.

in a meeting last week, i was listening to someone talk about how their teenage niece has leukemia and how she’s so positive about it. “she can’t play soccer or do any of the things she used to do. she can’t attend school. she can’t do this or that or be a teenager, but she’s always smiling. she got a death sentence but she’s still happy as can be. we’re all sick over it and she has to make us feel better.” you get the picture, right? i don’t begrudge this young girl her happiness, but i realized that i was starting to resent the person who was talking about her. i couldn’t stop thinking about how positive i was in my late teens, after all my autoimmune diagnoses. i didn’t understand why it made my parents sad. i couldn’t really process the reactions of the people around me. i was going to get better. i was going to do what the doctors told me to do and this was going to heal me. that’s how i thought medicine worked. they know what this is and now they know what to do. 

okay, i feel like i need to stop here to tell you that in no way do i think that my diagnoses were anything like being diagnosed with leukemia. it is not/was not the same. i’m writing here about a train of thought triggered by listening to this person’s story. now, back to my regularly scheduled programming.

for a few years, in spite of slowly giving up most of the things that brought me joy, after relinquishing the life i had dreamed up as a child, i stayed positive. and then, after years of keeping my faith, it was gone. my light went out. my mental processes had turned faulty and unreliable. i couldn’t keep food down. i couldn’t go out with my friends. i went to a bar on my 21st birthday, had two sips of a beer and asked my girlfriend to take me home. i watched hundreds of movies, listened to the same cds over and over, and i wrote. my writing became dark and twisted, thick prose that detailed the demise of my hope. i scribbled depressing poetry, fortified by a hardback copy of gray’s anatomy i’d had since the fourth grade. in my mid-twenties, after i lost hope, my life rapidly spiraled downward. unbeknownst to me, a decade of constant immunosuppressants had allowed my lyme disease to infect every part of me. i was depressed. i was anxious. i was turning into someone else and i couldn’t stop it from happening. this led to my dark night of the soul, three years of such profound misery that i honestly thought i wouldn’t survive. at some point, i was sure i was going to die- a combination of my medical neglect, substance abuse and mental illness. i was spiritually bankrupt. i couldn’t remember who it was i used to be. i had given up on myself. i felt utterly worthless, a liability to anyone who crept into my sick life.

for those of you who have chronic lyme (or co-infections, or a debilitating chronic illness, or all of those things), i imagine you might be able to relate to this. my doctors weren’t helping me. i had the red stamp of insanity on all my medical files. having been relegated to the realm of crazy people, i stopped trying to get help.

then, amid the darkness, there was a major event in my life, which is not necessarily too personal to get into, but would just make this post even longer than it already is, so i’ll skip over it. this event reminded me that somewhere in all of this suffering, there was still goodness left in me. there was that buddha seed, the potential to be someone better than the person i had become. i nurtured that seed. i climbed out of my mental and spiritual pain. i cultivated my light. i changed everything about the way i was living/dying. i found hope again. it has been almost five years since i made the decision to live in this world, to participate fully in my life, to be of service, and to accept life as it comes.

so last night, i told my friend that i am scared. edging toward the precipice of my lyme treatments, i am hopeful again. having hope that i will find wellness, be healthy, be able to manage my diseases feels familiar. i did that once before. my wise friend called this fear my muscle memory, my body remembering and my mind recreating the past, but today, i’m a different person than i was back then. for one thing, i’m a grown ass woman, not a teenager. i’ve done so much work, so much soul searching since then. i have continued to nurture that buddha seed. this path i’m on is not the same one i walked before. it’s natural that i have fears that these treatments will not work and it’s my responsibility to face those fears. i remind myself that if i feel uncomfortable, that means i’m growing.

my friend suggested we text each other a prayer each morning upon waking. “but when i get up, it’s 5:30 your time,” i said. this morning, at 8 am, i sent her the first part of the blessing and healing chant i opened this blog post with. today i choose to embrace both my hope and my fear. they are twin aspects of a single reality, two sides of one coin, and for today, i’m going to honor them both.