if i had ever been here before, on another time around the wheel

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i’m sitting in the sun in seattle, drinking an iced latte, listening to mid-2000s “emo” music, writing a blog. i guess some dreams do come true. i feel like i’m fully immersed in my current life while simultaneously being thrust back into my past. five days ago i found out that i need more shoulder surgery. i’m having it done on july 2. it’ll be my fifth. yesterday was the first day i’ve had time to myself since then, so i finally had time to start processing this. i essentially had to go straight from the surgeon’s office to birthday and bachelorette celebrations, a weird emotional dichotomy. to be honest i’m having trouble even writing this, and i’ve overdone it on the caffeine. my body is exhausted, my mind is racing, but i’ll be damned if espresso just doesn’t taste so good.

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i’m sorry that i’m not a person anymore. i’m a problem.

what do you do when your existence is futile? furthermore, what is the point when someone becomes more problem than person? is it the first time someone says “what are we going to do about joanne?” why can’t i just pull myself up and solve all of my own problems? is there a treatable pathology for that? no matter how many avocados i don’t eat or how much fun i don’t have, i just can’t pay my own medical bills and i still have unaddressed issues. i picked a lofty academic and career goal that i can’t accomplish without resources i don’t have and don’t know how to get. at this point i’m draining more from the world than i’m contributing to it. from a purely pragmatic standpoint, there is much futility in my existence.

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skinny love

Image-1let’s talk about body image. and how mine has been garbage most of my life. for a long time i believed everyone that i was less of a woman, that i looked childlike and weak. i am so far from weak, the idea is laughable to me now.

i’ve been made fun of for being skinny for as long as i can remember. i grew up underweight, both of my parents did as well. i’m lanky. part of that is ehlers danlos syndrome (marfanoid habitus anyone?), part of it are the bowed legs i inherited from my father. i didn’t wear shorts in public (outside of playing basketball), i constantly paid attention to the positions i was in and the clothing i wore, if they made me look too bony, i didn’t like to look in the mirror, i hated the scale, shopping for clothes made me cry. can you imagine what it must be like to have strangers constantly walking up to you asking how much you weigh, if you’re anorexic, or worse, trying to measure parts of your body with their hands? i reached 120 lbs (i’m almost 5’9″) in college and started to feel comfortable with that. then i got sick and anxious.

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“i’m tired and my shoulder hurts”

IMG_6218how am i back here? i started having shoulder surgery 12 years ago. i don’t even want to write this because i just can’t believe this is where i am. has anything i’ve done in the last 12 years even mattered? because here i am, back to “i’m tired and my shoulder hurts.” the last two days i’ve been in a lot of pain, so much pain i actually used prescription meds yesterday. it hurts to breathe, i couldn’t sleep last night, it’s constant, it begs for my attention. i’m supposed to meet with a scapula surgeon in two weeks. my original plan was to just get information, not have any surgery for a long time. plans change, i guess. if this is the new norm, i’ll have no choice. i went to the pain clinic last week. an anesthesiologist did dry needling and proclaimed me cured. and here i am, in soul sucking pain. there is no comfortable position, there is no respite. i just called the pain clinic, they suggested tylenol and meditation. i hate this so much. i don’t want to do this anymore. stop the world, i want to get off.

an open letter to kay ivey

Governor Ivey,

There are a lot of disgusting laws that have been signed as of late, but seeing as yours is the most egregious, this is where I’d like to start. Are you familiar with the term “Uncle Tom?” I’d like to start calling women who betray other women, Kay Ivey. This is a betrayal. As a woman, how can you sign legislature that enforces negligent women’s healthcare? Do you have any regard for the health and safety of women?

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what ever happened to predictability?

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the most loving member of the family

first, a disclaimer: some of my family members have driven me to surgeries, flown on planes to attend surgeries, and stayed up all night trying to make me laugh while i dry heaved. this is not about that. it does not discredit those people or what they’ve done.

i have a weird relationship with my family. i don’t talk about my family members on here much (and i don’t intend to) because i respect their privacy. it’s difficult because it plays into how i deal with my illness, and how i view myself. here’s what i can tell you:┬ásome of the people in my family are incredibly tough, talented, intelligent, and successful. it gives me an inferiority complex (which i would like to clarify, is no one’s fault but mine). my family holds me to almost impossibly high standards. this is both good and bad. it’s beneficial to be held to such a high standard because it has forced me to hold myself to a high standard. i’m ambitious, i have goals, i don’t allow myself to be completely defined or held back by living in this broken body. the flip side to this is i think i should do more, be more. i truly believe that i’m just not tough enough, that i can’t withstand enough to become what i would consider “successful” for myself.

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shouldering on

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i don’t think it’s much of a secret that i’ve had four shoulder surgeries, an even two a piece. my third and fourth (left and right respectively) were brutal. just over 10 years ago i had an unexpected open, allograft* reconstruction. they took a dead guy’s hamstring and built me a new shoulder. when i went to sleep i didn’t know that was going to happen. i was told that a one hour, arthroscopic** procedure would fix me and my recovery would be similar to my first two surgeries and i’d be good to go. when i woke up after the four hour surgery, i had a 5-6inch cut extending under my armpit, cadaver parts, and a surgeon’s apology. i wasn’t prepared for the hellish recovery. the post surgical pain was so severe that maxing out my percocet dose didn’t touch it, and once the additional atrophy pain set in, it was maddening. why am i talking about this? because i got to relive it today.

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this is the period blog.

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brace yourself: this will be a long one.

the inevitable

i started getting cyclical cramps when i was 11. i knew they were bad because it was really the only thing in my life that would stop me from playing basketball. i thought it was a stomach issue, but my mother put the pieces together and gave me a lecture about expecting “the inevitable” and bought me some giant pads.

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everybody talks

the two things i hate to hear people say: “i’m sorry” and “i know how you feel.”

we’ll start with “i know how you feel.” this is pretty simple. no. you don’t. even if it’s happened to you, you don’t. you may know how you felt in the same situation, you don’t know how i feel when it’s me. i know this is a well-meant phrase but it just isn’t. we all know how pain feels, we may even know suffering, but you don’t know how it feels to be someone else. and more over? it isn’t about you and when you felt it, it’s about the person feeling it now. helpful alternatives? “that must be so difficult” or “if you need anything, let me know” or even “i found this helpful when i went through something similar.”

“i’m sorry” is another well-intentioned phrase, but it’s a little bit harder to unpack why i hate this…and i reeeealllly hate this one. there’s nothing for which to apologize. i was born with a genetic defect, that’s no one’s fault. it’s also not something i’m angry or sad about. sure, sometimes i’m in circumstances caused by this genetic defect that make me sad or angry, but that’s life, everyone gets sad and angry sometimes. i like my life, my medical circumstance plays into the life i have. i hate the notion that disability or illness is something to feel bad about. i’m not my illness. while it has shaped my person and my experience, it is not me or my entire identity. i like who i am, and like everyone else, my adversity has given me opportunity and strength. without my specific struggles i wouldn’t know patience or empathy. i would lack (even more) maturity, i wouldn’t have made some of the most meaningful connections in my life. most importantly? i would not have ever had to face my fears, i wouldn’t have grown past them.

one of my favorite feelings is laying in the grass in the sun with headphones, without shoes. i love laughing so hard i couldn’t possibly feel anything else but laughter. i always take pause when i’m really laughing to acknowledge that feeling. i can’t tell you the immense joy i feel in those moments. would i be able to know such simple joy without knowing suffering? i understand that i may have to miss out or change my life plans sometimes, but in no way does this stop me from living a life i purposefully enjoy. don’t apologize, my life is beautiful because of circumstances, not in spite of.

i know that people are just trying to be helpful and empathetic when they say these things, i just think too critically and overanalyze this. if anything, i only urge you to think about how you speak to those with illness or disability, why you say what you say. or i’m full of it and that’s fine too.

whatever you do, don’t tell anyone

it makes no sense. i started a blog, pouring my soul to the bowels of the internet, and yet, i remain insistent on keeping my secrets. there are things no one knows about me and i wonder if i’ll care enough to take them to the grave. why do i do it? is it out of shame? is it my inherently mischievous nature? do i romanticize an air of mystery? it can’t be that last one; mystery goes out the door when you post details of your hysterectomy online. or maybe that’s exactly why. privacy is a forgotten luxury when you’re in a public restroom heaving away your endometriosis blues. modesty need not apply when you can’t log roll out of bed by yourself and you’re too strung out on post spinal fusion dilaudid to even mind the catheter bag. i can’t help but take notice of the stark change from my first shoulder surgery, when i wouldn’t even let the nurses help me dress myself. i’ve spent much of my life deeply embarrassed of these inevitable vulnerable moments, so now i’m just publicizing them. what’s left to fear when it’s all out in the open? here i am: a rubbery, anxious mess, desperately clinging to whatever secrets i’m not forced to out. take it or leave it.