An MFA-like syllabus for the self-educating poet

Education is a human right. Education should be free. I remember chanting that at Occupy Boston as I participated in Free School University (FSU), and those memories come back to me now.

Fortunately, as many of my friends in poetry have said, there are plenty of free or low-cost education options online. I have compiled them below to fit an “MFA theme,” which would comprise literature/literary studies, writing workshops and critical theory.

Literature/literary studies

Google Arts and Culture has the following offerings related to poetry (though anything can relate to poetry so explore away!)

• Dean Atta on the Influence of Black British History: “The influential poet explores how figures from our past and present day have inspired his work and are changing the course of history.”
• Take A Walking Tour To Canterbury with Chaucer
• Is There Any Art Out There? “Poet Salena Godden explores the question ‘Is there anybody out there?’ through the Google Arts and Culture archive.”
• Ancient Corinth: From Stone Age To Digital Age. “The mythical fountain fit for Pegasus, poets and pictures.” 
• Take a Tour Around The World with Poet Luís Vaz de Camões
• A Brief History of Books

Edx has the following offerings and you just have to register to have access to the archived course materials:

• Poetry In America: Modernism “Reading works by Robert Frost, T.S. Eliot, Langston Hughes, Marianne Moore, William Carlos Williams, and Wallace Stevens, among others, learn how American Modernist poetry departed from past traditions and past forms.”
• Poetry in America: Whitman: This course “focuses on the poetry of Walt Whitman, a quintessentially American writer whose work continues to bear heavily upon the American poetic tradition.”
• Poetry in America: The Civil War And Its Aftermath
• John Milton: Paradise Lost
• The Divine Comedy: Dante’s Journey To Freedom

Coursera has the following offerings:

• Modern and Contemporary American Poetry (I took this course years ago and had a great experience.)
• Modern American Poetry “The course highlights both major poets—from Walt Whitman and Emily Dickinson through T.S. Eliot, H.D., Amy Lowell, Hart Crane, Langston Hughes, Muriel Rukeyser, and many others—and influential movements. The course mixes historical overview with close readings of individual poets and poems.”
• Words Spun Out of Images: Visual and Literary Culture in Nineteeth Century Japan “In their ambition to capture “real life,” Japanese painters, poets, novelists and photographers of the nineteenth century collaborated in ways seldom explored by their European contemporaries. This course offers learners the chance to encounter and appreciate behavior, moral standards and some of the material conditions surrounding Japanese artists in the nineteenth century, in order to renew our assumptions about what artistic “realism” is and what it meant.”
• Greek and Roman Mythology “This course will focus on the myths of ancient Greece and Rome, as a way of exploring the nature of myth and the function it plays for individuals, societies, and nations. We will also pay some attention to the way the Greeks and Romans themselves understood their own myths. Are myths subtle codes that contain some universal truth? Are they a window on the deep recesses of a particular culture? Are they a set of blinders that all of us wear, though we do not realize it? Or are they just entertaining stories that people like to tell over and over? This course will investigate these questions through a variety of topics, including the creation of the universe, the relationship between gods and mortals, human nature, religion, the family, sex, love, madness, and death.”

Participate in The Sealey Challege started by poet and educator Nicole Sealey. Read more here.

Penn Sound– A resource for finding poetry recordings featuring historical and current poets

Ocean Vuong: The 10 Books I Needed To Write My Novel

Writing Workshops (or options that focus on writing) etc…

Coursera offers:

• Creative Writing: The Craft of Plot “In this course aspiring writers will be introduced to perhaps the most elemental and often the most challenging element of story: plot.  We will learn what keeps it moving, how it manipulates our feelings, expectations, and desires.  We will examine the choices storytellers make to snag our imaginations, drag them into a fictional world, and keep them there. We will learn how to outline and structure a plot, discuss narrative arc, pacing and reversals and reveal the inevitable surprise: connecting the beginning, middle and end.” (Coursera does offer Sharpened Visions: A Poetry Workshop but I found it boring and too basic. Hopefully, this option would be better.)
• Transmedia Storytelling: Narrative Worlds, Emerging Technologies, and Global Audiences “Transmedia storytelling is the practice of designing, sharing, and participating in a cohesive story experience across multiple traditional and digital delivery platforms – for entertainment, advertising and marketing, or social change.”
• Memoir and Personal Essay: Write About Yourself (Specialization) “How To Write About Yourself…so that someone else wants to read it! This is the heart of this Coursera specialization in Memoir and Personal Essay. Masters of both genres share tips, prompts, exercises, readings and challenges to help every writer imagine, construct and write compelling pieces of non-fiction’s most popular form: the personal narrative.”

Writers of Color Discussing Craft– An Invisible Archive– Includes “writing resources that have been written, edited, or presented by writers of color.”

Khan Academy offers a class on storytelling and some parts of it may be useful. You probably don’t need to create your own theme park but the particular unit called, “Pixar in a Box: The Art of Storytelling” is a good place to start.

Udemy offers the following:

• Poetry Primer: Survey of Writing Styles and Projects: “The verse writing techniques and terms you need to write poems in various styles and become the poet you want to be.” This class is not free but it is low-cost at $20 or less with a discount.
• Write with the Great Writers: Literature and Creative Writing– This course is not free but is low cost at $49.99 or $11.99 with a discount.

Grub Street has various classes for writers in different genres including poetry, memoir, fiction and nonfiction. The classes usually involve a fee and the website says they give out scholarships sometimes. 

Letter to Poetry Lovers by Airea Dee: “The writing life is not an easy one, and it’s further complicated by the seeming need to be credentialed in order to make a living. I’m here to say you can actually do any number of day jobs and still be an amazing poet.” Read more here

Find the complete Non-Craft MFA Resources put together by Airea Dee here.

Critical Theory

Critical Theory Reading List

The Poetry Foundation has various essays on poetry as well as features on poets and their poems.

Lit Hub has a great selection of literary theory and current articles.

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Top 10 Favorite Healers (on my interstitial cystitis journey)

The internet has transformed the experience of a chronically ill patient. We are no longer bound only to doctor-patient experiences, and, for someone with a chronic illness that carries with it a history of doctor abuse, that’s a very important concept. When the doctor prescribes medication that only makes you feel worse or not better at all; when the doctor prescribes medication that will cause organ damage; when the doctor dismisses you and claims there is nothing wrong with you, there is an alternative: meeting people with similar problems on the Internet and trying to sort out what it is you should do next.

When I was diagnosed with interstitial cystitis in 2012, I soon became hopeless with excruciating pain caused by an “incurable” disease. Despite my skepticism of alternative medicine, I did not have another option, so I began to “collect” healers on the Internet who inspired me to learn more about the relationship between nutrition and autoimmune disease. (It is not officially known for sure that interstitial cystitis is an autoimmune disease, but that is the most prominent theory about the condition.)

Here is a list of healers on the Internet who I highly recommend following. I do not agree with every claim they make, and I do not believe in any miracle elixir, but I do believe in role models and trying to focus on what healing means to you. Thankfully, my interstitial cystitis is much less severe today, and I am able to live mostly free of bladder pain as long as I am careful with what I eat. I could not have found my path without these outstanding individuals, so I wanted to take the time to share them all with you:

Melissa in the Raw:

Melissa was the first person on the Internet who inspired me, and she is the reason I quit seeing an abusive urologist and started focusing on natural healing. In her YouTube story, she tells about her painful and agonizing experiences with doctors and her focus on healing from IC. In her belief that she could heal herself, she started a radical movement, which led to the Facebook group: Healing Interstitial Cystitis Naturally .

Wendy Cohen

Wendy Cohen is the author of The Better Bladder Book, which is one of the most recommended books on the Healing Interstitial Cystitis Naturally Facebook group. Many people also like the Detox Miracle Sourcebook by Dr. Morse, but I found that to be a little too woo-woo for me. I couldn’t imagine myself living on the top of a mountain and only eating organic citrus for three months, so Wendy Cohen’s approach of eating an anti-inflammatory diet free from gluten and dairy spoke to me much more.

Jessica

Jessica is a frequent post-er on Healing Interstitial Cystitis Naturally Facebook group, and she shares her journey on YouTube. Many people in the Facebook group consider her among the most influential members because she works hard not only at her own healing but feels compelled to help other people.

 

Sunny

Although I personally am not a raw food enthusiast, Sunny perfectly displays the spirit of a fighter. She talks about how people treat her like she is crazy for criticizing the Standard American Diet and for emphasizing that you need to eat differently to heal.  Many IC patients seem to be a big fan of Sunny’s work, which is influenced heavily by Dr. Morse.

Brittany from Montreal Healthy Girl

When I first developed IC, Brittany had not yet found a YouTube presence, but I would have loved to have her videos then. She is so well-rounded and doesn’t preach any one dietary approach. She also believes in the power of nutrition to heal and is a chronic illness survivor herself. People on the Healing Interstitial Cystitis Naturally Facebook group often post her videos to provide support for new members.

Noelle Janka

I recently stumbled upon the Facebook group Spoonie Superstars, and I love it! Noelle Janka started the group to support her work as a life coach for people with chronic illness and disabilities. Noelle is a chronic illness survivor and knows the extent of suffering that people are going through and the need for someone to understand. Having had many negative experiences with therapists, I can testify to the fact that we need more mental health and life coaches to specialize in chronic illness and disability care.

Gavin

I might be a bit biased because he is my roommate and one of my favorite people ever. He leans paleo in his approach to healing and has an extensive herbalism background. He has more knowledge about the ingredients in food and how those ingredients are derived than any other person I have ever met.

Emma

I am also biased on this choice because she is a former roommate. She is an outstanding herbalist who also works as a doula.

Dr. Arora

I was very fortunate to find an alternative medicine doctor who accepts my insurance. Dr. Arora agreed with many of the things I had learned about nutrition from the healers above. Dr. Arora was spot on when she told me which supplements to take. My health improved substantially, and I still take many of the supplements that she recommended, though dietary changes were more crucial for me. Members of the Healing Interstitial Cystitis Naturally Facebook group often suggest seeing a naturopath. New members typically ask, What is a naturopath? Basically, a naturopath is a holistic doctor who understands that there is a link between gut health and immune system function.

 

 

A Few Disclaimers: 

The author of this blog is against weight loss/diet culture/body shaming and has not shared any of this information with the intent to promote weight loss/diet culture/body shaming. The author of this blog would like to acknowledge that financial/class issues as well as other marginalizing experiences may affect the accessibility of following these healer’s advice. The author of this blog is not claiming that all cases of chronic illness can be cured. 

Beyond Bourgeois Healing Tropes

Almost everyone has a shocking food story. My roommate said she once didn’t know that Ramen noodles were supposed to be a soup, so she would mix in the flavor packet, scrapping the noodles raw like sand. When I went vegan, I used to eat an entire pack of Oreo cookies because at least Oreos were vegan. I used to go days or weeks without a vegetable, yet described myself as vegetarian.

Today I have been gluten-free, dairy-free and mostly processed foods free for 3 years, a radical response that I needed to take after suffering excruciating pain from autoimmune disease. (Please see my other blogs if you’re curious about those issues.)

I am left with so many What ifs. What if parents had enough money not only to raise children but to feed them healthy food? What if there is a relationship between trauma and chronic illness? How do you even individualize trauma when half of all American children are living in food insecure homes? What if the economy valued people who prepare and serve food? What if my spending more time in the kitchen wasn’t looked down upon as being servant-like? What if we had real nutrition education involving public debate rather than government propaganda?

How do I suggest changing one’s diet away from the Standard American Diet (SAD) without invoking classiest, ableist and other oppressive undertones? For many suffering from eating disorders, it is hard enough to simply eat let alone try to understand the complex relationship between nutrition and health. And even if one eats healthy foods, genetic and environmental factors can still negatively affect health.

Yet I find myself gravitating toward this bourgeois “whole foods” capitalist movement because I agree that eating foods as they come from the Earth is a good idea. However, it’s difficult to prepare all my own foods, so I end up under-eating or eating less than ideal options almost every day except for the weekends when I spend a lot of time cooking. I feel like I’ve suffered enough physical pain for one lifetime, and I need all the privilege that I can get to help me cope with my life. The political complexity of using privilege to survive is not lost on me, and it does not come without considerable guilt.

On a path to try to heal from chronic pain, I finally relented to try a low-cost acupuncture option. Everyone and their brother Joe tried to convince me to do acupuncture, so it became a way of dismissing my reality by saying I hadn’t tried hard enough to get better. Certainly, I have tried very hard to recover, from radically changing my diet to moving into a co-op house dedicated to being gluten free and dairy free, to coping with my troubles through writing and art. I have done acupuncture four times so far, and I can’t tell for sure if it is helping.

I see people all around me destroying their health by never eating vegetables, drinking too much alcohol, or obsessively eating processed foods. It’s because they have health left to destroy, I think to myself. How wonderful to not get on people’s nerves, to eat like an American and feel welcome at the table, but more and more people are not welcome at the table in this culture of poverty coupled with disordered eating in which critics who believe in healing are labeled elitist and out of touch with reality. When we demonize the healer (or someone who is on a healing journey), then how will we realize that the real nightmares of oppression live on in the corporate food lobby and the higher prices applied to people who try to fight against chronic health problems with better nutrition?

Food & Friendship: Learning to Live with Dietary Restrictions due to Chronic Illness

In this photograph, I have successfully brought together two very good friends from different walks of life. I met Kelly in Hammond, Louisiana where we both attended elementary school, and I met Heather at Hood College in Frederick, Maryland. After college, Heather eventually moved to Seattle, and Kelly, wanting to get away from Hammond for a while, also moved to Seattle. There you have it! Two of my best friends in life ended up in the same city, and I was visiting family in Portland, which meant that Seattle was a short train ride away.

What I didn’t tell anyone at the time was that, on one of the train rides to Seattle, I broke down in tears in the bathroom. I don’t remember if that happened during the time this photo was taken or the second time we met up, but, nonetheless, my future had big changes in store for me.

I was diagnosed with a painful bladder condition called Interstitial Cystitis in August of 2012 after suffering for a few months with what I thought was a UTI. There was no presence of bacteria in my urine, however. It turned out that Interstitial Cystitis (IC) can cause symptoms of severe UTI. I also struggled with chronic chest pain (Costochondritis), chronic dental pain (neuralgia), and chronic back pain. Doctors said they didn’t know what caused IC and that it was incurable. The pain was unbearable.

After I did more research, I found out that one of the most prominent theories about IC is that it is a systematic autoimmune disease where your body attacks its own healthy tissues, including the bladder lining. One of the most successful treatments for autoimmune diseases is to do some kind of dietary intervention by eliminating trigger foods like gluten, dairy, sugar, and processed foods. These kinds of foods are difficult to digest or have an inflammatory effect. I was desperate to feel relief from the pain, so I got on board with the new diet, which wasn’t easy for someone who grew up sugar-obsessed. I could devour an entire King Cake while searching for the tiny plastic baby. I wasn’t exactly a rabbit eater. I didn’t even like salad.

Enough about me. It turns out that both of my best friends (and my best friend’s mom) would know exactly what I meant by having health problems and needing to eat differently. Kelly had struggled with her health since 3rd or 4th grade when they put her on Ritalin for ADD. She explains what happened next:

“When I got into 8th grade I started having chest pains and visited a cardiologist, the long and the short of it is I ended up spending most of my 8th grade year at home and started homeschooling. Ok, what have I been diagnosed with? Honestly, I’ve seen so many doctors and they all have something different to say it’s hard to keep up. When I saw my 1st Cardiologist he told me I have tachycardia, which is a connective tissue issue and causes low blood pressure. When I was in College I saw a different cardiologist, since my other one moved, and he diagnosed me with something else but basically told me as long as I exercise regularly I shouldn’t have any issues. When I came home to the states, I saw a naturalpathic doctor, which being few and far between in Louisiana tends to be very expensive(but worth it). She told me I have a DNA mutation that causes my body to block folic acid, so I’m not getting the amount I need. I also have a vitamin b12 and b6 deficiency, thyroid issues, etc. These all can cause the feeling of being tired all the time, concentration, etc. She immediately put me on vitamins etc to help.  She told me that alot of people that get diagnosed with add or adhd are misdiagnosed because it’s actually in imbalance and they aren’t getting the vitamins and minerals they need! She also tested my blood type, since she’s found that the “Eat right for your blood type” has worked for her patients. I found out that I actually need to be on the Paleo diet.”

Kelly also suffered a severe UTI while studying abroad and was put on antibiotics for months, which caused a severe overgrowth of yeast. As a result, she had to follow a strict diet, which she explains:

“I live in a house where there are non meat eaters, but not as strict on food as I am so it’s difficult.  I basically still don’t eat gluten, dairy, carrots, mushrooms, sugar. Every so often I eat fruit, but ones low in sugar I stick to blueberries mostly. I eat meat, chicken, and veggies.”

Heather has also seen a naturopathic and teaches her son about the problems that gluten and dairy causes. I was surprised when we went to dinner to hear her young son talk openly about having problems with gluten. When I was his age, I had never heard of gluten. I didn’t know anything about a healthy diet. In elementary school, I drank chocolate milk from a plastic bag. It was like a Capri Sun because you had to jam a plastic straw through it and hope you didn’t jam the straw all the way though creating a leak. I would only drink the chocolate milk and eat the warm roll. I rarely ate any other food for lunch. Basically, I specialized in eating gluten and dairy. Pizza and ice cream were my favorite foods, and I’d still be eating them to this day if it weren’t for wanting to shut off excruciating pain that was ruining my life.

I often feel like a food freak because I can’t eat gluten, dairy, corn, soy, processed sugar, white vinegar, processed citrus fruit and many other foods. But when I think about other people around me, I realize that we are all fast becoming food freaks. Chronic illness in young people is on the rise, especially autoimmune disease. (Read The Autoimmune Disease Epidemic), and the failure of modern food to be safe and free of chemicals, genetic engineering, and environmental pollution coupled with a lack of caring about the nutrition of children has created a generation of chronically ill people.

Kelly said that her family generally ate healthy when she was growing up because her father has a higher degree in nutrition and health sciences. No single cause can explain every case of chronic illness. Recently, the World Health Organization has blamed processed meat on higher rates of colon cancer. But what about the other food that the bacon-eaters were eating? There are too many undefined variables. Who knows!?

When you experience mysterious health problems and doctors are unable to help you, you have to turn somewhere. More and more people are turning to dietary changes, though no one should be forced to do so. Chronic pain and chronic illness are personal, a private world of agony felt in our own bodies. Nothing has brought me more relief than eating differently and having friends who understand why I need to do that for my health.

My Response to The Politics of Privilege-Checking, and how to move toward collective action

In the article, The Politics of Privilege-Checking by Sharon Smith, the author argues that we need to build a mass struggle rather than offer our individual identities to no end. Most activists have sat in a circle of others and listened to each person talk about their identity. Of course, useful conversations can come out of this kind of organizing, but simply talking about identity in terms of ways that you are privileged and ways that you lack privilege ends the conversation there without any further collective action to oppose the institutions that uphold privilege and oppression.

Smith says that we must build a connection to working-class strategy to create revolutionary struggle, and, unfortunately, a lot of political theory, like post-modernism, got away from working-class strategy by focusing on subjectivity and individual identity instead of class struggle. As an activist, I completely agree with the limitations of identity labels, though I think the idea of raising consciousness is subjective, and I struggle with how to connect each individual to a larger mass struggle. I don’t think I’m doing a good job of connecting myself to the collective struggle, and that’s exactly what this blog is about– a growing sense of failure to fully connect with activism.

I go to protests, marches, speak-outs, meetings with fellow feminist organizers, radical political events, etc… I write poetry. I work on building a voice of resistance to a society steeped in violence and oppression. My participation in activism is volunteer work. It’s unpaid labor. It’s an extracurricular. It’s work I do outside of employment. Karl Marx said that capitalism exploits the worker by robbing her of her value, whether that means getting paid nothing or getting paid too little. In other words, when we participate in activism (unpaid labor) we are subject to the exploitation inherent in the capitalism system.

When I was sick for a long time, I couldn’t participate in activism. I stopped going to feminist meetings. I stopped going to radical political events. I stopped marching etc.. Why did my activism end when my health plummeted? Because my relationship to activism has always been individual, not collective. I give my unpaid labor to organizing, and, when I had no individual labor to give, I had nothing to use to connect with the mass struggle. Of course, I still went on Facebook and signed petitions, which helped me stay connected, but I felt frustrated that I couldn’t be more connected.

How does someone who cannot afford to give their unpaid labor participate in activism? I have never been able to organize in such a way that offers a solution. I have heard stories about unions and strikes, which sounds very collective in a genuine way, not falsely collective in the way that I try to be in my individual efforts. I would like to already be collective, but, like most people, I have never held a job that was unionized, and, as someone who sees work as a means to survive rather than an ends to fair and ethical relations, I can’t imagine feeling collective and included in employment.

So, when Marxism says to build a larger mass struggle of the working class, I don’t disagree, but I don’t know how it’s going to happen when I keep struggling individually, giving my unpaid labor to activism, and hoping to build a larger mass struggle. Whether you are acting individually or collectively isn’t based on how you feel but on how you relate to the economic system. Individuality is a unit of capitalist exploitation. I know that I am a unit of exploitation even when I participate in struggles that are supposed to be collective. That’s why when I got sick, I had to stop trying to be collective. Activism had to take a back-seat in my life.

Instead of privilege-checking, activists should focus on their relationship to activism and how to transform that relationship from individual to collective struggle. We should be honest about the limitations rather than romanticizing a false collective because it is the false collective that capitalism creates as a mirage in a desert of neoliberalism. We have to realize the ways we are pawns doing unpaid labor, and we have to realize that this realization will never be enough to address the gross inequality of wealth without real collective struggle.

Dealing with Diet Culture and Gluten Intolerance, one feminist’s struggle

Diet Culture makes millions of dollars off of convincing Americans that the key to a good life is losing weight and being thin. One of the tactics of its profit-making scheme has been to propagate gluten-free diets, turning gluten-free foods into one of the up-and-coming industries. In some ways, as a person who had to go gluten-free to treat mysterious health problems, I benefit from Diet Culture making a profit from the gluten-free industry. For example, now people are becoming more familiar with what gluten-free means, and it is increasingly common to find restaurants that offer gluten-free menus or accommodations.

But does it disturb me that this increasing public awareness stems from a for-profit motive rather than a concern about human life? Yes, of course I am very worried about my story becoming appropriated as a contribution to fat shaming and fat phobia. I am open to suggestions about how I can prevent my story from becoming a weapon. I do not think that silence is the answer. I do not think that the answer is to say, Gluten-free, that’s stupid! I do not think that it is fair to ask me not to tell my story because, when I do tell my story, I stand up for patients who have experienced mysterious chronic illness and who have been treated unfairly by doctors.

To be a chronically ill female (most people with my illness are female) is to be in an oppressed position where doctors dismiss you as hysterical, the medical industry refuses to research anything about you unless they can make a profit, and even everyday people say that you’re just dieting because it’s a fad. Food intolerance has nothing to do with diet. Did that kid in middle school who had a peanut allergy say that she was on a ‘diet’? No, that would be awkward phrasing. However, my food intolerances are subjectively determined, which means I realized I had these food intolerances by doing careful research and experimenting with what foods increased my pain levels.

When people tell me that it’s just a fad, I feel like I can’t even begin to explain how I have fought through the hell of my body to get to a better place. I had to believe in healing. If I couldn’t believe in healing, I would have rather died. Healing is different than cure, however. Healing is doing everything that I can to get better. What can I do to get better? Is a question that assumes one can get better, which is not the right approach for everyone with chronic illness, but is sometimes the right approach, especially when a doctor claims that you’re beyond help and then you prove them wrong. Patients are powerful. Patients are powerful. I chant that to myself so that I can sit proudly in the chair at the doctor’s office and be a voice of resistance as well as education for those who still naively believe that western medicine has their interests in mind.

Should I not talk about the toxicity of American food because for so many people in this country just having any food at all is a privilege? Of course not. I must realize the intersectionality of why our food is toxic and why people go hungry even in a country as rich as the U.S. The intersection is the for-profit system that sells the same processed, genetically modified ingredients to us in different colored boxes while severely increasing prices on fruits and vegetables, for that is the same system that ensures the gap between rich and poor.

Should I not talk about the relationship between food intolerance and the toxicity of American food because so many people in this country are under attack from fat shaming and fat phobia? No, because capitalism is making money off of feeding us toxic food, keeping us sick, and convincing us that some bodies are ugly and unworthy.

For the record, food intolerances have been linked to genetically modified crops and toxins in processed food as well as the larger environment. Don’t take my word for it, check out the book, The Autoimmune Disease Epidemic, or read about the effects of glyphosate, the main ingredient in Monsanto’s Round up Ready.

Anyway, my point is that I need to have an outlet to talk about the political implications of my food intolerances in the context of chronic illness. I am becoming more and more afraid of finding the right outlet because I do not want to trigger feminists who are fighting against Diet Culture, and I do not want them to trigger me either. While I have felt triggered by their trivializing the effects of gluten intolerance on public health, they have felt triggered by some of the resources that I have posted on Facebook in favor of gluten-free diets. I agreed with these feminists criticisms because the websites are funded by the diet industry, so they are absolutely right to be angry about any propagation of diet culture, especially by someone like myself who is a feminist. I would like people to understand that they are also used as a weapon against me, and I am used as a weapon against them, which explains how people devoted to anti-oppressive spaces in turn perpetuate oppression even when their minds and hearts are in the right place. My hope is that by drawing awareness to this issue, we can stop being weapons and start being comrades, though I feel there is a lot of work to do on both sides.

How Being Chronically ill and Queer Intersect, or Why do I have to defend my existence?

I recently started a Facebook Group called, Gluten Free Queers, as a way to honor the intersection of a gluten-free lifestyle with one’s sexuality and gender identity. To me, this is a branch of the myriad ways in which chronic illness and queerness intersect. I also put together a manuscript that includes many poems about the intersection of chronic illness and queerness. It is fair to say that I find this topic valid, important, and true to my life experiences; however, I have received negative feedback questioning whether this intersection even exists, which has been incredibly infuriating for me.

How dare you question whether I exist? I think to myself, knowing that whoever would question the intersectional nature of these issues probably wouldn’t understand that kind of reply or the origin of my anger and frustration.

For some reason the same people who question the relationship between being chronically ill and being queer have no trouble understanding the relationship between gender and chronic illness. They are no stranger to mostly men as doctors dismissing their pain or upholding the capitalistic/paternalistic pursuit of for-profit pharmaceuticals.

Then why is it so hard to understand that queer people in chronic pain have unique experiences of how these two struggles collide? My own chronic pain has reinvigorated self-doubt, shame, dissociation, and confusion, which I first intensely felt due to my growing sense of being queer in my late teens. I felt so overwhelmed and unable to process my sense of my body and self that I floated around on the ceiling, separated from myself so severely that I wasn’t sure what my own limbs felt like or where they were located in relationship to me. I would fall over for no reason. I would end up places and wonder how I got there. I lived disoriented, fragmented, and scared.

This fear was my first language for a sense of gender and sexuality that I had no other framework for. As I type this now, I am still trying to teach myself to unlearn this fear. I need to speak a new language for myself, one that does not rely on panic for representation. When I found out that I was chronically ill, kind of like being queer, I had known but repressed it for years. I had often wondered about this symptom or that, if there was something deeply wrong with me or if I was just being crazy. My chronic illness spoke the same language that I knew all too well: Fear. My chronic illness made me disconnect from my body so that I no longer recognized myself. This state of lacking self-recognition became a kind of safe haven, a closet that kept the language of fear from yelling at me. In the closet, fear spoke to me in digestible whispers.  I continued with my daily life working and spending time with others, as if nothing was destroying me from the inside out. I became irritable and pushed others away because I felt that they no longer understood me.

Some days I can’t tell the difference between pain that I have because queerness has remapped my body versus pain that I have because chronic illness has remapped my body. I will never be the same. That doesn’t mean that I am broken, but it doesn’t mean that others should project onto me how they think I should be “fixed,” forced to see somehow that bodies are not panic-driven, that language without words is not fear. I’m tired of people telling me that queerness and my gluten-free-chronic-pain-coping life style is somehow unrelated. Please, please, if you are one of those people or know one of those people, tell them to stop harassing me by denying my existence. Ableism is a form of discrimination against people with disabilities, including people on the chronic pain and chronic illness spectrum. If someone tells you that their experience with ableism and homophobia intersect, don’t tell them that it’s impossible to draw connections. Do listen with an open heart.

14 Dos and Don’ts of Healthy, Meaningful Relationships

1.

Don’t expect yourself to have the same experiences as others in order to relate to them. Do learn to hear other people’s painful experiences even if they don’t match your own.

2.

Don’t go on and on about your problems without clarifying whether you want me to just listen or whether you’re seeking to make changes and would like my input or advice. Do make it clear what expectations you have for our interaction.

3.

Don’t make allusions to having a secret and then not tell me what it is. If you don’t want to tell me a secret, then don’t suggest you have one (some exceptions may apply to trauma-related issues). Do tell me personal things about yourself if you feel up to the challenge.

4.

Don’t compare yourself to me, then get angry and not tell me what’s going on. Do speak openly of your insecurities and the ways you are trying to work on them.

5.

Don’t pretend to listen to me while thinking of how you can make yourself into a certain kind of person through our interactions. Do listen to me for me.

6.

Don’t compete for most traumatic or most interesting experience. Do realize that it matters how you feel when you tell something, whether you’re present in your own story, not how dramatic the events were.

7.

Don’t interrupt or interject too much. Do question a social style that depends entirely on inserting yourself into others’ stories/social space.

8.

Don’t create conflicts in order to have something to talk about. Do talk about things that are important to you or just be silly.

9.

Don’t be afraid of silence. Do cultivate meaningful silence.

10.

Don’t blame people for problems that are circumstantial. Do understand the full context when you can.

11.

Don’t quickly blame people when they try to talk with you about an issue that they have. Do listen with an open heart.

12.

Don’t blame other people just to deflect from your own undoings. Do be honest about your own imperfections.

13.

Don’t expect me to nurture you, especially if I haven’t been vulnerable with you lately. Do ask polite, open-ended questions.

14.

Don’t assume that you know what I’m thinking. Do ask me what I am thinking.

The Failure of Western and Alternative Medicine: An Anti-Capitalist Perspective

In my experience as a patient with mysterious chronic illness, I have witnessed the astounding failure of both western and alternative medicine. By western medicine, I mean the established medical community, primary care doctors, specialists, hospitals, institutionalized “care”, etc… By alternative medicine, I mean the diet industry, supplements, vitamins, nutritional therapy, and specialists outside of mainstream medicine, such as acupuncturists, Chinese herbalists, and counselors.

Western medicine treats the chronically ill patient with drugs that cause a myriad of side effects, often without bothering to understand the patient’s underlying problem. Western medicine does very little to intervene in the Standard American Diet (SAD) because it is of the same for-profit nature as the corporations that dominate the food industry. Doctors consider alternative treatments to be signs that the patient is “crazy” or “witch-like,” prone to magical thinking.

Of course, there are some doctors open to alternative treatments. Some of them practice integrative medicine, which includes both alternative and western approaches. Some doctors do more to help patients with their diets than others, but even alternative approaches are deeply flawed.

Alternative medicine is also profit driven. Supplements and services claiming to cure the chronically ill abound. Foods that offer “health” are higher in price and increase the profit of corporations like Whole Foods and other “community” health food stores engaged in the process of gentrification.

One advantage of western medicine is the availability of resources to fund new studies and support health care decisions with scientific research. Western medicine offers some definitive tests through blood, biopsy, or scans. It sometimes provides patients with a diagnosis, which can help them find resources for healing even if those resources lie outside the scope of western medicine. However, many chronically ill patients cannot be understood by scientific inquiry because their illness is difficult to study or because the medical community doesn’t anticipate a profit from their proper care. A patient’s experience of being under scientific study is often highly objectifying, dehumanizing, and humiliating. Proponents of western medicine point to the scientific quality of medicine and the fact that it has research supporting it while ignoring a patient’s continued suffering and obvious discrepancy with their treatment protocol.

One advantage of alternative medicine is that it emphasizes the patient’s relationship to themselves and their environment. Changing one’s diet is usually less risky than taking a toxic medication. Patients do their own research if they’re able to and try a variety of approaches, which may emphasize one’s connection to nature and prove to be a rewarding and spiritual journey. However, alternative medicine doesn’t care about the patient either; it is similar to the democratic party in that it pretends to care about you, but really it’s a facade to serve capitalist interests.

I wish to distinguish between alternative medicine and patients who take the rocky road of trying to heal. These patients do not represent capitalist interests, for it is in their best interest to heal. Not surprisingly, some of the most useful information for chronically ill patients on the internet comes from patient forums.

Beware the poor handling of chronic illness by both alternative and western medicine communities. As a patient, you deserve so much better. I am slowly finding my path, using mostly knowledge that I gained from alternative medicine, but it has been a difficult relationship to deal with such capitalist interests when I am trying to rescue myself from the private hell of my body.

Remember that in your healing journey many people will criticize you for “disturbing” them. The failure of both forms of medicine is triggering to many who have to push out that reality from their consciousness rather than do the work that it takes to have solidarity with people who are chronically ill. One thing that alternative medicine is right about is that nutrition is an important topic, and we live in a society that has a nutritional crisis, which has nothing to do with the mythical “War on Obesity” (People have always had different bodies) but has a lot to do with the corporate, GMO, for-profit production of food at the expense of everyday people’s health.

Interstitial Cystitis: One Patient’s Journey (ongoing)

In June 2012, I had flown to Chicago to meet up with a poetry friend and attend a socialist conference. After having a great time with my poetry friend, I went to the conference, which soon led to an excruciating couple of days in which I spent hours on the toilet with painful and frequent urination. I kept my anguish a secret. When the plane landed in Boston, I already had a doctor’s appointment for the next day. The doctor did a urine test to run a sample by the lab and he figured I had a routine UTI, so he prescribed an antibiotic. The antibiotic, however, didn’t work, so after coming home again, this time from Portland, OR, I again went to the doctor who never got results from the lab but gave me another round of antibiotics anyway. A week and a half later I returned in even more pain radiating throughout my lower pelvic area into my back and chest. This time the doctor said there was no presence of bacteria found in my urine, so I must not have a UTI. He referred me to see a urologist.

This was actually the second time I had seen a urologist. In my early 20s, I went to see a urologist after spending a night in the emergency room over a severe UTI, which doctors called pyelonephritis, a urinary tract infection so serious that it infects the kidneys. I remember the doctors in the emergency room arguing with each other. One said, “The leukocyte count is only plus 2. That isn’t serious enough to indicate an infection like pyelonephritis.” The other doctor said, “It could still be pyelonephritis.”
After that, I went to see a urologist who did a test of my urine, but he said everything looked good. He claimed, “Well, there is nothing wrong with you.”

So, it was my second time seeing a urologist. My girlfriend at the time was with me. During the visit, we regularly exchanged glances because the doctor was so rude and idiotic. He claimed that I must be sipping too much water to cause so much urinary frequency. He said, “Lots of women have bladder problems. Just go home a wait six weeks. You’ll get better.” He also performed a pelvic exam, which was pointless because he did not get any information from it.

After that terrible visit and still in terrible pain, I asked the Doctor Finder phone line operator to please find me a female urologist. After a long wait, the Doctor Finder person admitted that there aren’t many urologists who are female. In fact, there was only one that was coming up in the system. I made an appointment with her. Right away she said I had a condition known as Interstitial Cystitis, a chronic inflammation of the bladder lining. She said the cause is unknown and the condition is incurable, but the problem can be managed with diet and medication. She handed me two slips of paper that detailed what foods to avoid, such as citrus, processed tomato products, citric acid, coffee, caffeine, alcohol, spicy foods, soy, chocolate, vinegar etc… Over the course of many months, I tried taking antispasmodics and an antidepressant, neither of which seemed to help that much long term. I cried in her office many times. She was very cold and detached, ready to dispense medicine, but that was about it.

My primary care doctor noticed my distress and wrote in my medical report, “Patient has anxiety and depression.” He wanted to prescribe me an antidepressant. I refused to take that medication, and I soon got off all medication. I read the Better Bladder book written by a health care professional who has Interstitial Cystitis (IC) and has spent a decade researching the disease. The thesis of her book was that patients with IC should not eat gluten or dairy. In November of 2012, I realized that I really wanted to go gluten and dairy free, but I felt lost. Gluten and dairy are the primary foods in the Standard American Diet (SAD), which I had grown up with. I remember going to Morrison’s, a smorgusboard, where my favorite foods to eat were creamed corn, Mac and Cheese, mashed potatoes with gravy, and chocolate milk. I loved the combination of pizza and ice cream. The temptations seemed overwhelming. How could I give up such food? On the other hand, I worried about becoming disabled. If my health kept spiraling out of control, I would lose everything. I was already becoming isolated from the major relationships in my life. I hated my painful body. The standard for a good day consisted of a day in which I could imagine that one day I would actually be able to touch myself again without wincing from pain. I wanted to heal from IC more than I wanted to eat delicious American foods, so I tried going gluten free first. The reason that people with mysterious, seemingly incurable health problems go gluten-free is because sometimes there is a theory that their condition could be an auto-immune disease. One theory is that the consumption of gluten is difficult for the body to digest, so food particles seep out through the small intestine, get into the blood stream, and cause the body to attack itself. Another theory suggests that consuming gluten-containing foods leads to inflammation in the body. Dairy can have a similar affect when not properly digested and can also cause inflammation. (Think of how a bowl of ice cream makes you have more mucus when you have a cold.)

It was a terrible month-November 2012. I didn’t know much about going gluten-free. I ate a lot of broccoli with rice pasta, day after day. Even now, certain kinds of rice pasta make me feel sick because I ate so much of it. I also forced myself to eat salad even though I’ve always hated salad. Because I couldn’t have vinegar, the only dressing that I knew of was olive oil. At this point, I was still trying to be vegetarian. I had been vegetarian for five plus years and didn’t want to go back on that commitment.

At first, I gave up on gluten-free because I was still in so much pain. It didn’t seem to help. But taking the medicines didn’t help me either. I was lost. I made a YouTube video about the failure of Western AND Alternative Medicine in the treatment of IC. I was so angry and hopeless and worried that I would have these razor blades in my private interiors forever. I considered whether or not life was worth living with such a broken body. Then the idea of being gluten free came back to me. I decided I would make one meal a day gluten free until that felt comfortable, then I would make two meals a day, then three… I needed to try again because I wasn’t sure if I had given the diet a fair shot. By March 2013, I had finally worked up to having all three meals be gluten free, and I had learned things along the way, how to make gluten free bread in a pan, how to saute vegetables, how to eat a lot of asparagus and sweet potatoes, how to make green smoothies. I realized the error of my ways. I had been gluten free in November but I had not considered eating anti-inflammatory foods, like greens in green smoothies. I also had relied heavily on grains for my calories even though grains are inflammatory (some more than others). And I had been using canola oil rather than something less genetically modified and less inflammatory like coconut oil.

Since March 2013, I have been completely gluten free, though I may have experienced some accidental exposures. I also added in being dairy free a few months later. I wish I could say that I am completely better, but I’m not. I’m a little better. I’ve also struggled with yeast infections since May 2013. The $60 probiotics that I bought at whole foods didn’t seem to help at all. I’m now trying a new probiotic called Restora and am feeling a little bit better, but I have my ups and downs. It’s too early to tell if it is working.

I’ve also been experiencing chronic dental problems, which is a whole other can of worms, but might be related. My dentist cannot find anything wrong with my front two teeth despite the chronic pain that I have in these two teeth following an infection in one of my front teeth that resulted in a root canal and an additional surgical procedure to remove the tip of the root.

I’m thankful that I moved into a gluten-free dairy-free home at the end of August. One of my roommates has Celiac’s, one has a kidney condition, and another is healthy but health conscious. Having the support at home is so important, but it’s still challenging when I work two jobs and attend a weekend school. I don’t have time to prepare enough food. I’m almost always hungry. This whole experience has resulted in me dropping 30 pounds. No one said anything or noticed that this happened, however. I tend to keep it a secret, my private turmoil.

To make matters worse, people often think of being gluten free as “elitist,” because gluten free foods are more expensive and buying organic is also more expensive. I feel like I don’t belong in public spaces when I go out unless I take a risk. I hate this American mentality that in order to belong somewhere out in public you must buy something. In order to use the restroom, you must buy a croissant. Toilets should be available to everyone who needs them whenever they go out. Instead, I have peed on trees in the Arboretum and in places behind bus stops. I have taken shits behind gas stations. 

Obviously, I have a lot of anger. The food system created my illness by getting me hooked on gluten, dairy, processed foods and sugar. Without these foods, I probably wouldn’t have gotten sick. But once you damage your body, it’s hard to undo the damage. I believe that we’re all addicted to the foods we eat. At least, I was. I would eat candy instead of a meal sometimes. I would really have to think about the last time I ate a vegetable. It’s easy to not eat vegetables in America.

I have so many questions: Am I allergic to gluten or does going gluten free simply decrease the amount of inflammation that I have? Is IC an autoimmune disease or an un-treatable infection without a trace? Should I consider going on the GAPS diet ( a very strict diet of no carbs and a lot of broth? Or should I stop torturing myself with diets due to the stress that they cause? 

Unfortunately, I think the GAPS diet is my next journey. I’m reading the book right now. It involves following a very strict diet of broth and low-carb. My IC symptoms are less severe, and I don’t have urgency or frequency as often now, but I still have severe yeast symptoms, which I’ve had since May 2013, and the current month is January 2014. That’s more than 8 months! Can you imagine how horrible that is? Have you ever had a yeast infection? How long did it go on before you felt insane? Doctors simply cannot help me. All they want to do is give me antidepressants or antibiotics, two medicines that are partially responsible for the decline of my health. I’ve used various alternative treatments for yeast, such as Grape Seed Extract in pill and tincture form, Baking Soda with water, garlic, Oregano Oil, Probiotics, Herbal Detox for Candida, Green Smoothies (raw foods) etc…  So far, no consistent luck. That’s why the GAPS diet appeals to me because it is the one thing I haven’t tried, but I do worry that I’m making a mistake. What else can I do? 

I’m tired of people thinking that I’m “crazy.” Recently, I had a doctor’s appointment in which the doctor’s aid responded to my dietary restrictions by saying: “Really, what do you eat? How do you go out with friends?” He didn’t understand why I would be on a strict diet when I don’t have Celiac. I’m frustrated with the lack of understanding that people have toward those who are on medically necessary diets, particularly if the medical necessity is determined by the individual patient rather than a doctor. Doctors do not know what causes IC or how to effectively treat it. Alternative medicine doesn’t have all the answers either. Overall, both kinds of medical communities are failing IC patients. Therefore, IC patients are the experts on the disease. We should be taken seriously, even our questions and confusions are an important part of the puzzle.