13 August 2014

The Roller Coaster of Chronic Illness

Content warning: Discussion of chronic digestive problems, medical terms, bodily functions, other matters re: chronic illness and awareness.

The easiest way for me to cope with things is to write about them. The following won't be particularly well-written, but I can't care about that right now.

I didn't get back until about 1am from the ER, and I've been sleeping off and on ever since. They didn't admit me, but they ran a lot of tests, including a throat scope thing, and observed me. The latest diagnosis: I have bile reflux gastritis. It happens in rare cases to people who've had gallbladder surgery. Eventually I might have to have corrective surgery, or my chances of stomach cancer are higher. My liver is overactive, and what helps alleviate symptoms somewhat is a low fat diet with lots of probiotics, so we'll see. It's a chronic illness, so all I can do is try to manage it. Even with the low fat diet, my stomach will still have bile in it. My colon will still have bile in it. It's just a matter of dealing with less bile and having things flow as they should, or a little better, anyway.

I've been trying to manage these symptoms ever since 2005, post-surgery, when they were much worse. My flare-up this month has been the worst since 2011, when I had a C. Diff infection. I have been to many specialists, trying to find answers. First, it was diagnosed as a protein malabsorption problem. Then Irritable Bowel Syndrome. Then it was Colitis. Then it was simply lactose intolerance. Two colonoscopies later, and it was, "You have an elongated colon," even though I didn't have gastrointestinal problems until my botched gallbladder surgery. My chronic illness is not organic, and even though that's something I've always known, it helps to finally, finally have some tests to prove it. I'm still not 100% sold on the new diagnosis, even though everything seems to "fit," but that's only because I've been told everything under the sun for a long time and have developed a sort of skepticism about my medical journey, as it were. Dr. House does not exist, I'm certain; even though I respect those in the medical profession, sometimes I'm not sure how much they understand their patients and their needs.

For instance, in many, many cases, removing the gallbladder is fine for the patient. In my own case, however, things went wrong, and I have a nine-inch scar and thousands of dollars of medical debt to prove it. Through this journey, going from doctor to doctor, specialist to specialist, I've lost friends and loved ones who did not want to stick around. It was too much for them. And to anyone who says that this sort of behavior is inhumane, I've learned to interpret it differently. For instance, statistically, many marriages end in divorce once one partner falls very ill. At first, being supportive is manageable, but then it becomes too much of a burden to handle. Sometimes, it affects the "healthy" partner's ability to take care of themselves; their time and energy is constantly consumed by taking care of their ailing loved one. As someone who is the "ailing loved one," the last thing I want is for those I care about to neglect themselves in order to take care of me. But it's happened, and some of those people are gone from my life now, or they occupy a different role. I used to be angry about it. Now, even though I'm frustrated by my illness and how others react to it, I do finally get it. It's like being on a roller coaster for too long.

The roller coaster ride ends up being too much for some to handle, and they want off. I understand that now. But the thing is, I have to remain on that roller coaster. I don't have the liberating option of asking to get off. I want off so badly. I want it to stop, so that I can leave and "go home." But coming to terms with chronic illness means that, sometimes, you have to accept that the roller coaster is home now. Certain choices are eliminated once you have a chronic illness (or two or three). There are folks who are able to stick by their loved one through it all, with grace and patience, but not everybody is able to. And not all of those people who leave are like John Edwards; not all of them are, for lack of a better term, douchebags. Some are, though; I'm not gonna lie. I've had assholes in my life who decided their "funny friend" wasn't entertaining anymore, and they left when things got difficult. And then, there are people who at first think of chronic illness as a battle that is always winnable, always short-term, and once they realize that it's an on-going, bumpy ride instead, they get off when the bumps become intolerable.

But here I am, nine years later, and I'm still enduring those bumps. It's about survival and taking it one day at a time. Through it all, I have often felt as though my body hates me. This summer alone, I've had to deal with multiple health concerns. It gets to be exhausting, which is also probably why I've been fatigued and in bed a lot. I was diagnosed with a degenerative disc, for which I had been, up until recently, going to physical therapy three times a week. My insurance stopped covering it, so I'm left with trying exercises at home. Later in the summer, I was also diagnosed with an ovarian cyst. Thankfully, it is very small and treatable with birth control pills, so I'm not feeling as crampy as before. But my doctor had originally hypothesized that I had a tumor, which caused me to feel anxious for a few weeks leading up to the ultrasound to confirm or deny her guess. Thankfully, it's a cyst. I'm able to manage it, along with all of my other health concerns, with medicine, vitamins, and therapy (both the psychological and physical kind).

This leads me to another discovery I've made through all of these ups and downs: It's OK for me to be exhausted, and for me to say so and take time out for self-care. I've found Christine Miserandino's Spoon Theory to be especially helpful as I try to cope with these issues daily. If for any psychological or physical reason I'm just not up for arguing or conversing or anything else I don't have the energy for, it makes sense for me to pause or even stop what I'm doing. And I can forgive myself for it, too. For instance, I'm often the listener or shoulder to cry on in my relationships with others. It's OK for me to erect a temporary boundary sometimes when I don't have the emotional fortitude to be the support that someone else needs. As Miserandino might say, "I don't have enough spoons to handle that particular hurdle today," and that's perfectly OK.

Ultimately, there are facts about me that I'm still trying to internalize in ways that aren't harmful to my self-esteem. I do love myself more and frankly have less tolerance for bullshit than I did nine years ago. I have clinical depression. I have social anxiety. I have a degenerative disc. I have bile reflux. It's strange for me to be simultaneously resistant and embracing of labels, particularly when they're "new," like the bile reflux diagnosis. But with these diagnoses come, hopefully, awareness and education. I'm feeling better about myself and who I am. Through all of that, I hope there's compassion from others in the mix as well.

When you discover that someone you care about is dealing with chronic health concerns, don't automatically assume that it's temporary and that a simple "get well soon" will do the trick. Understand that often, there are good days and bad, and even on the good days, someone with a chronic illness may still not be "well." I appreciate the well-wishes -- all of them -- because the intentions are good and I can use all of the love and support I can get. But it's frustrating when I have to explain myself over and over that I'm not well, in response to statements like, "Well, you look fine." Don't assume that how someone looks is a good indicator of how they feel. In fact, don't assume anything. Just be understanding. Offer comfort and a smile. The majority of the time, that's all that I need. I actually don't want anyone to take care of me, other than doctors or nurses or, well, me. I just want to be seen and respected.

And that's the main reason for this post: I no longer talk about these trials very often in fear of alienating those I care about, but after returning from the hospital this last time, I feel as though it's better for me to be transparent about it all. I'm not some sort of spokesperson for chronic illnesses. That isn't my aim. I'm just one person, with one complicated story, hoping that my sharing does some good.


03 August 2014

Rest My Head

August always brings those black eyes,
those little hearts,
and I can't stop her.
She makes paper dolls but leaves them naked.
They have no faces.

When I was small, I dreaded autumn.
The bullies, dressed
in doubt and sweat, spoke
sweetly before
using their licorice fingers
to strangle me.
And August would say nothing,
just stand there timidly.

At home I would
iron-out the curls,
the temptations.
I would resolve
to do better.
But the windows are rolled-up
in this hot car, and I rest
my head on the steering wheel.

Meanwhile, August weaves her fingers
in and out of reality,
wisps of thought
in moist heartbreak,
and I am falling asleep
in the nest she creates.


14 July 2014

A Virtual Blog Tour, Kind Of

So, I was tapped to participate in this really neat experiment, during which you answer some "interview" questions and share information about some poets and their lovely blogs. Because it functions in a somewhat chain-lettery fashion, I think I scared some potential participants away. At any rate, here is how it was supposed to work: fellow artists or writers invite you to contribute, then you talk about them and their work on your own blog, answer four questions about yourself and your craft, and "refer your readers to three other poets or creative artists and their blogs. Those artists, in turn, do the same and each one refers their readers to three others, etc. It's a great way to get traffic to your blog and also introduce others to creative folks you think are worthy of attention." Ahem. So, I'm going to name-drop some folks, but I'm mostly going to talk about the person who tapped me for this project, who is the great poet Kendall A. Bell:



Kendall A. Bell's poetry has been widely published in print and online, most recently in First Literary Review-East and Drown In My Own Fears. He was nominated for Sundress Publications' Best of the Net collection in 2007, 2009, 2011, 2012 and 2013. He is the author of fifteen chapbooks. His most recent chapbook is "Be Mine". He is the founder and co-editor of the online journal Chantarelle's Notebook and the publisher/editor of Maverick Duck Press. His website is www.kendallabell.com and his chapbooks are available through www.maverickduckpress.com. He lives in Riverside, New Jersey.

I met Kendall through my dear friend Kayla Marie Williams**, who is also a great writer. (You should check out her blog here.) Kendall's work is lovely, human, and on occasion, a little difficult to read. I don't mean that the way that you think I mean it. His poems, such as "Adalynn decides it's time to go," published in Drown in My Own Fears, punches you in the gut. You'll need to read it to see what I mean. With "Awkward Moment #1," you're right there with the speaker, in his nervousness and quasi-shame, and you can relate to that closing stanza (or, at least, I could): "Between she and the last / had been days of depression / and no fucking / and she could tell". The lack of punctuation suggests momentum, and yet there is urgency with that depression. Overall, his work packs a wallop and is worth a read and re-read. (Don't know where to begin? On his official website, check out his weekly poem. He'll even read it to you.)

His blog is full of "curmudgeon" observations (hey, he's the one who uses the term to describe himself) and offers his readers glimpses into his various interests outside of writing. Kendall has great taste in music, for instance, and likes everything from 90's alternative rock to pop and folk. (Indeed, I can always count on him to quote Veruca Salt lyrics.) Also, I must point out another intersection: my friend Kayla, who, like I said, introduced me to Kendall, is a radio DJ with WXUT and plays a lot from those genres in particular, so it's fitting that all of us have musical tastes in common as well as writing. (Check out her program Radio Alchemy, on Friday nights, 10pm-Midnight EST, on www.wxut.com [Click "Listen Now" then "HD"].)

So, in summary: You've got some talented people to check out, like, stat!

To finish this entry, I'm supposed to answer the following questions about my creative process. Typically, I don't like thinking about my work in this way. I love hearing about other writers' craft and process, but talking about my own feels uncomfortable and, actually, disingenuous, because my craft changes all the time. Not with the direction of the wind, mind you, but at least depending on what else is going on in my life, such as the classes I'm taking as a grad student, my assistantship as a grad student, physical therapy, regular therapy, whether or not there's been enough chocolate in my diet, etc. But, anyway, I'll try my best to answer thoughtfully and honestly. Here goes nothing.

1. What am I currently working on?

I'm writing more essays. Ha! No, really. I have been writing for class, blah blah, that's not what I mean. I mean, I've been trying my hand at writing social commentary in essay form. Most of it isn't quite polished (See: the essay from a month ago examining my own body image issues and confessions), so it isn't shared widely, but soon, I'd like to edit them and put them here in my blog. I'm still best at poetry, I think, so I'll continue to work on that, too.

2. How does my work differ from others of its genre?

I write my poetry in character. While my work feels somewhat confessional, most of the time, it isn't about me. I'm always trying to perfect my ability to adopt a persona and monologue, but often, my pieces end up being more like dialogue, which is fine. For my chapbook, I adopted the persona of the femme fatale, only I made her out to be this pissed-off, queer murderess. Obviously, I'm not that person. Parts of me are that person, but by and large, she's a character modeled after complex, nuanced characters that came long before. But I think it's fun to explore sometimes taboo topics through creative writing. I know I'm not the only one. I'm not doing anything new. I just hope that it's as fun to read as it is fun to write.

3. Why do I write/create what I do?

It's really important for me to share and to be in conversation with other writers. It's a community, ages old, as well as global. Poems and stories are histories; they're powerful. I love participating, engaging with that collective consciousness. It's a fulfilling way to connect. Also, on a more personal note, I've always had trouble articulating myself well through utterance, and writing gives me agency. Writing is my voice.

4. How does my writing/creating process work?

My grandma told me when I was a child thinking-up stories and poems that I should keep a notebook close by for jotting down ideas. I've attempted to do that, many times, but I always abandon it. I used to have to write everything down by hand first, organize it and cross things out, before typing it up. But the digital age makes things way too easy. Self-editing is a blessing and a curse. I need to copy and paste things I'm tempted to delete into a separate file, for safe keeping. I'm vicious. I will gouge. In order to control that urge, I have to let it all out through free writing, let it simmer, and return to it later. Thus, most of my writing is private. Does that make me less of a poet, if most of my work is for myself? I do more reading than writing. And reading informs my writing, anyway, because I think it's communal (See: #3.). So, I'm a contradiction, because I think writing creates a great community, and yet I am often talking to myself, so to speak. But really, eventually, my intention is to share all of it. My blog houses unpolished work, but my journals and computer house even more unpolished work, work that is really, really unpolished. So, in sum, my work is never "done."

And on that note, I'll wrap-up this part of the tour. See you next time!

**Happy early birthday, K!


07 July 2014

Vanity Piece

One day, I will be absolved, and the salt on your brow will have collected for nothing. What a pretty face that's been spoiled by anger. Every new adventure is a trap. When you follow the smoke to the source, there's no fire waiting for you. One day, I will be redeemed. Forgiving myself is much harder than forgiving you.

A house is always small when the only person living there is you.


02 June 2014

Being Big

In one week, I will be twenty-nine. While I am looking forward to my thirties, I have been feeling reflective about entering the last year of my twenties. Part of that process has involved trying to feel better about myself and my body.

I had wanted to write a list of twenty-nine little confessions about myself in time for my birthday, and I still might eventually do that, but for the past several months, I've been more interested in trying to articulate how I feel about my physical self.

I developed early, so I've had a love-hate relationship with my curves ever since I was nine years old and saw blood in my panties for the first time. I was not taught to celebrate my womanhood. I was taught to experience it as a nuisance, a necessary evil. To use more "academic" language, I had developed internalized misogyny. I hated my body, particularly my legs and ankles. I judged other women's bodies for being too thin or too fat. I performed my gender as a tom boy, preferring boys' toys like action figures to girls' toys like Barbies, even though I owned and played with both. I even had a male imaginary friend. I felt more inclined to respect patriarchal figures in my life, for good or ill. It was something that was conditioned, of course, not "innate." But I felt as though there was something wrong with my gender. I did not want to explore the trappings of femaleness. I did not want to be womanly.

In fourth grade, however, I felt slightly differently, at least for one evening. It was the night I dressed as Marilyn Monroe for Halloween. I was tall and "Amazonian," according to my grandma, wearing a size 12, with C-cup breasts. I looked too mature for Trick or Treating, and young high school boys were looking at me. I was grateful that my sister and I were accompanied by our dad. I felt strange, but I liked the modest heels I was wearing. I liked learning how to carry myself, stand taller. I liked being pretty.

Junior high was the worst; I judged my looks harshest then. I did not like being taller than my friends. I did not like being big. Changing for gym class was the worst. I was wearing undergarments meant for someone twice my age. I did not want my peers to see my woman's bra, my Just My Size panties. I felt like a freak.

Running around the gym was embarrassing, because my breasts bounced. I hated to sweat. I was made fun of for being a fat girl. I wanted to be invisible. Even now, I exercise alone, out of fear. I don't want to be seen and laughed at for my size.

In high school, I chose to wear mostly black. I did not wear dresses, and I very rarely wore shorts. I tried to focus my attention on my face. I thought that I could allow myself to think my face was pretty, even if the rest of my body was not. I wore mascara and purple lipstick, to emphasize features I liked about myself.

I started to see more variety in body type and gender expression when I went to college. And just like other privileged white girls, it was also my first encounter of feminism, then intersectional feminism. I started to read bell hooks and Patricia Hill Collins and Donna Haraway. I started to use a full-length mirror to look at my whole body instead of just my face. I started to talk more with other people about their bodies. I started to add more colors to my wardrobe. I started to see myself.

And even though my feelings about my body were not necessarily contingent upon my dating experiences, dating a man who saw me as beautiful helped me in my journey, and I am still grateful for that.

Now that I am nearly a year away from my thirties, I am able to say that I have come a long way. I am a pretty woman, surrounded by other pretty people. I am attracted to a variety of body shapes and sizes and know that many people, regardless of gender, struggle with their bodies. I am active. I am tall, but not as tall as some of my friends. My feet are flat, and my ankles are wide. I am big.

Today, I went shopping for swimming suits, which is usually an uncomfortable experience for me. I did not end up buying this one-piece suit because the top portion was too small, but I took a selfie in it, for future reference. This was a size 20 Tall, but a size 22 would've fit the top half better. They were out of 22s. This is my body today. There are times when I feel sad that I did not embrace my "smaller" self, and I am still trying to lose a little weight, not for vanity but to feel more comfortable. But for now, this is me, and I look pretty.


June 2, 2014



Today, I'm no longer interested in shaming myself or others. I'm not interested in calling a thinner woman a "skinny bitch," because she's probably got issues of her own, and it isn't fair for me to add judgement to that struggle. I am no longer interested in judging women bigger than myself, because I know what it's like to be judged for being big. I am also not going to judge men for their bodies. In fact, the men I've dated have had their own experiences judging themselves for their shapes and weight. I also acknowledge that weight does not determine health. My cholesterol, blood pressure, blood sugar, etc, are excellent, according to my doctor. I have digestive issues and back problems, but according to my doctor, they are not related to my weight, and aside from said issues, I am healthy.

So, in summary, I've come a long way toward accepting myself. I still have a long way to go. I still have bad days, when I feel like a whale. But those days are fewer. While I am still not the most feminine, I have come to embrace and celebrate my femininity and have to decided to perform my gender as such. I am a much happier woman at nearly-29 than I was five, ten years ago, but I still have a lot of progress to make. I look forward to what the future has in store for me, my big, pretty self.

I am not beautiful despite being fat; I am fat as well as beautiful.