Endometriosis Awareness | Life After Diagnosis

Nothing can prepare you for the idea that in a single day, your body can change and life will be irreversibly worse. It’s too frightening, too depressing, too taboo. Parents don’t want to scare their children, doctors don’t want to spike patient anxieties, and we all want to lie to ourselves, blindly believing we’ll always be healthy. I’ve learned the hard way - three times now - that sometimes, life as you know it will end.

March is Endometriosis Awareness Month and I felt compelled to write something about the toll that chronic illness can have on a person. Selfishly, I need somewhere to vent but I also hope that this helps scare someone into keeping a close eye on their health. It is a finite resource and late 20s is a crucial time to start on your preventative care.

Two weeks post-op on my first outdoor excursion. In this image, I have six broken bones and was surviving on Dilaudid.

As some of you know, I was diagnosed with an uncommon bone deformity in my legs four years ago and underwent major, invasive surgery in hopes of correcting it. Blow Number One was that diagnosis. I was 23, very active, and never once considered that I could become disabled out of nowhere. The promise of a swift recovery was impressed upon me over and over. I accepted it with youthful optimism; a year from now, I’ll be better. A year from now, I will walk again and rock climb again and my legs will be even better than they were before.

Blow Number Two came the elusive year after surgery when my doctors admitted that the surgery hadn’t done what they hoped. Through excruciating pain, I’d relearned the basics of walking but to everyone’s surprise, hit a plateau. I was impatient, thinking that there had to be an easy solution. After two more surgeries to remove a handful of the eighteen screws in my body, my surgeon told me short of another extreme, invasive procedure that probably wouldn’t make much difference, we’d reached the surgical end of the line. I went through two straight years of physical therapy, only to have my therapist say we’d done all we could reasonably do. I was 26, newlywed with a burgeoning art career, and should have been in a happy stage of life. Instead, I spent weeks into months sobbing over my failed surgeries, trying to wrap my head around the idea that I was officially designated as permanently disabled.

It was becoming apparent that I wasn’t coping, so I got myself a therapist specialized in chronic pain and she diagnosed me with medical PTSd. With her, I started to heal and accept my new life circumstance. I was finally issued the permanent disability parking placard I’d fought for since the very beginning of my health ordeal. I found an adaptive climbing group, started especially for those of us with disabilities. Things were looking up and I was finding ways to integrate the things I used to love back into my life. More importantly, I was learning to cope in healthy ways.

I started a comic series with the intent of giving me a space to process. Little did I know my whole body would become traitorous.

As the seasons shifted, so did my health. On Thanksgiving of 2018, I was curled up in agony, trying to decide if I should go to the ER for serious abdominal pain that had been beating me down for a month. It reached a crescendo that evening, but due to the medical trauma from my very first surgery, I knew better than to expect reasonable medical care on a holiday. My primary care doctor had already tested me for all manner of GI and food related intolerances. I’d given up gluten, broken my diet all the way down, and was living on depressing, low FODMAP approved foods. And yet, everything - especially my fatigue - had only gotten worse. I was recently 27, miserable, and reasonably certain I was headed for literal death.

Getting reeeeeally tired of these hospital bracelets

I was desperate for an answer and begged for an ultrasound, finally managing to articulate that it felt like something was inside my body that shouldn’t be. I was correct and within the week - right before Christmas - I had a lemon sized cyst removed from inside of my left ovary. (55mm, for the curious.) My OBGYN said the ovary was so swollen, she could see it from the outside of my body. I went into surgery thinking excellent, onward to recovery. However, I left with Blow Number Three; the soul-crushing label of endometriosis.

Over the years, I’d wondered many times if I perhaps had endo. I’d even brought it up with a doctor or two, who told me that my catastrophic menstrual cramps were just part of the uterus-having experience. My current doctor was horrified when I told her that I have to shut it all down and stay in bed for the first three days of every single period. She was more horrified when she realized I’d been doing that for fifteen years and no one had ever helped me.

The hope was that my symptoms would decrease, at least for the time being, once my massive cyst (which we named Kevin) was fully excised. The surgeon said she saw no further endo and they hoped I’d have a couple of pain-free years before having to tackle this again. Instead, I had to endure a brutal abdominal surgery recovery and the symptoms never so much as decreased. I’ve been in severe pain every single day since mid-October and there’s no end in sight. I’m nearing 28, I’m not coping, and it feels like I’m just biding time until I get hit with Blow Number Four.

I’ve written this to occupy myself while I wait to hear back on yesterday’s ultrasound. Writing has always helped stave off the anxiety, but I have so many questions that keep creeping in. Has Kevin the Cyst regenerated? Are there more of them? Do I name them Kevin too or do they deserve their own names? How much endo was missed during the excision? Why did they miss it in the first place? What if none of this is even related to endo and my symptoms remain a mystery? What if it’s cancer? Oh god, what if it’s cancer? What if I’m in pain for the rest of my life? What happens when I can’t mentally handle the pain anymore? Why does this keep happening to me?

Nothing makes it easier to hear you have yet another incurable condition (especially one that is so difficult to control). Hours and hours of research have left me feeling darker and more hopeless about my future. The prospect of yet another surgery looms overhead. I’m exhausted, everything hurts, and it’s impossible to keep up with the demands of existence when an automatic 60% of my daily energy is siphoned into ignoring the ever-present pain in my left side. I long for the days when I was active and social, young and pretty, or even for the original post-surgery days when I simply wasn’t so isolated. By the fifth surgery, people assume you’re just used to it and don’t visit anymore. They’re right - I am used to it but I never want to be used to feeling so lonely. Life has become a carousel of four doctor's appointments a week, medications that help me with nothing, and the unending stress of being a burden on those I love.

I intended to end this on a more optimistic note about self care, but the truth is that I’m sick of deluding myself into believing that one day, I won’t be sick. Maybe at this point, self care involves telling yourself the truth about your situation and being transparent with others about your struggle.

As I previously stated, endometriosis is incurable, difficult to manage, and severely under-researched. I am filled with rage towards a system that does not value women or reproductive disease. If you feel so compelled, you can donate to endometriosis research here.

Nothing can prepare you for the idea that even after you’ve hit what you feel must be rock bottom, life can still change and once again, become irreversibly worse.

A Woman Without a Country | On Multi-Ethnicity

    As we all know, this election cycle has been unavoidable and exhausting. For all of us, there has been at least one talking point that hits deeply. Without getting into the political nitty gritty of it all, I want to talk about some of what's been brought up for me. This is bound to be long, but bear with me.

    I am Mexican. My father is (still) a Mexican national, born in the southern province of Tabasco. Growing up, that heritage was a huge part of my day-to-day life. I called my grandmother abuelita and loved reading aloud to her whenever she asked me to teach her more English. She was disappointed when I didn’t want a quinceañera. My dad's side of the family spoke primarily Spanish at get-togethers and they started teaching it to me at the same time I was learning English. I loved pan dulce and hated molé and ate homemade tamales with wild abandon. Our holidays followed Hispanic custom (which was particularly annoying when we wouldn't open presents on Christmas Eve until midnight). I grew up as a proud Hispanic child in a heavily Mexican populated town. I never questioned this part of my identity.

    As I got older, my abuela got sick. The family stopped seeing each other as frequently. The tío who hosted family gatherings had an accident, so the mantle was passed on to my mother - whose family hails from the Midwest. The Mexican customs faded. Dad stopped speaking Spanish at home. My ability to speak it faded. My younger brothers were raised with significantly less Hispanic influence. However, it wasn't until I went to a Mexican majority high school that I felt uncomfortable with myself. People laughed when I told them that I, too, was Mexican. I look white, so I couldn't possibly be Hispanic. Hell. My full blooded Mexican father looks as white as I do. I can read Spanish proficiently, but my speaking is poor. What does that count for in the scheme of things?

    I went from being a Mexican child raised in a Hispanic family to being too white to be Mexican (yet simultaneously too Mexican to be white). I'm a woman without a culture and this election has only pushed the divide further. When Trump talks about immigration, about what brutes and losers my people are, I feel the hurt in my bones. I worry for my father, who is in the process of obtaining his citizenship. And on a less societally important level, I'm worried that I'm not involved enough in my heritage to feel as personally attacked as I do.

    This year has shown me that it's time to reconnect. I want to know more about my family. I want to travel to my dad's childhood home and see where we came from. I want to push my language skills beyond Spanish 2. I’m already in the process of obtaining dual citizenship (and when people ask me why, I know that it stems from emotionally needing that piece of paper to prove that, yes, I am Mexican). I’m going to a Dia de Los Muertos celebration as well as a Halloween party this year (and yes, I’m aware that it isn’t Mexican Halloween). It's important that I don't feel so uncomfortable with incorporating my culture into my life that I feel like I'm appropriating it.

    With all of this in mind, no matter which way the election falls, I will be doing my best to find who I am within the context of my ancestry. You'll be seeing more of this in my artwork going forward and I hope that you'll follow along with me on this journey.

    To quote Neruda (who I will be reading substantially more from as I start learning Spanish again), "Algún día en cualquier parte, en cualquier lugar indefectiblemente té encontrarás a ti mismo, y ésa, sólo ésa, puede ser la más feliz o las más amarga de tus horas."

Translated: Someday, somewhere - anywhere, unfailingly, you'll find yourself, and that, and only that, can be the happiest or bitterest hour of your life.

My dad is that little one in the middle with the cool guy eyebrow thing going on

My adorable little abuela

My father’s unenthused face looks exactly the same now as it did when he wore suspenders. Mid-1950s

2014 | A Year in Review

Every year, I write an essay of repentance for my failures, thankfulness for the good moments, and defiance toward the bad. I draw resolutions from a hat and swear to adhere this time around. I'll take more photos, practice guitar, read all the books I impulse-bought but didn't read. Inevitably, I forget within the week.

For the first time in my adult life, I ended the year without a good or bad classification. I've always conformed to the binary but 2014 has hovered steadily above ground zero. For each negative, there's been a positive and for each step forward, there have been two back. It's been a year of stability - or stagnation, depending on the day you ask me. 

Despite everything, I can't deny it's been a learning process and I'd like to keep a record for Next Year Me. Maybe I'll retain lessons longer than aspirations. I always did learn better the hard way.

• Patience is a virtue I wasn't born with but, my god, she can be taught! Some things are worth waiting for. Some waiting may last for years. Some waiting is for Godot.

• Hard work eventually pays off if you let it. But sometimes you have to pay it forward to yourself, buy that plane ticket, and trust that you can handle a few months of four jobs and no sleep.

• Living away from home doesn't mean giving up your past life. It just requires adapting to a particular sort of schizophrenia.

• Running away won't solve your problems, but it will give you some perspective. Maybe that's all you need to solve them yourself when you return.

• It's okay to admit defeat when you've been banging your head against a wall for a year. You're concussed, you're over it, and any further detriment is likely to be permanent. Stand down, soldier. There are better things than these.

• The best way to cure a fear of solitude is to spend time on your own. A year of alone time under my belt and, hey, it's not so bad. I'm verging on enjoying my own company. Almost.

• You can't predict everything. Sometimes, a silly childhood dream slaps you in the face and you realize six months later that, god, I should have been doing this the whole time. Now it's just about playing catch-up with the years of missed practice.

• I've learned to write in cursive, count in Chinese and Turkish, sing in front of people without panicking, and manage a feature film production. However, I messed up grilled cheese last week. I may never learn to cook.

Instead of declaring resolutions I'll immediately ignore, I'll just hope 2015 contains a little more adventure and a little less overthinking.