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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One Response to “my writing life.”

  1. Sue said

    I continue to read your blogs & will do so more in the next days….I really admire how brave you are to share your personal feelings & yes, it will be one of your healing powers as you navigate your challenging journey…& as you’ve said many times, your writing and sharing will help others…..A big reason we’re all here is to reach out to others in love and acceptance….My love, Sue

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