I’m not a part of anyone’s world. And that has to be okay.

Among all the Disney VHSs that I wore out as a kid, there was one that I only remember seeing later in my childhood, loved, but never owned. My mother disliked the premise, so we never had it in the house, but seeing it on television later on was something that I felt echoed some of my struggles. One song from it, in particular: “Part of Your World” from The Little Mermaid echoed the dissonance between myself and the human world. For a long time, I believed I was less than human, because that is how I made sense of how I was treated. I was consistently excluded on merits I didn’t understand. I know now part of it is because I am a very different kind of person, comprised of many worlds but not accepted as a part of them due to only partial immersions.

I’m giving a few examples here but these are by far not the only ones. One of my favorite TV shows, that I’m sure I’ve mentioned here before, is Buffy the Vampire Slayer. Buffy, whom I very much relate to, is marked, like vampires, by having to walk two worlds (human and demon) and not be part of either but having composites of each. It seems perhaps like a silly reference, but when adapted into a less dichotomous way of thinking, it’s another media reference applicable to much of how I feel.

Trigger warning for mentions of sexual violence and associated feelings as well as other sensitive material.

Continue reading “I’m not a part of anyone’s world. And that has to be okay.”

My Endo Story, Pt II: Surgery was a success. Now, to live life.

Knowing your real worth, understanding you have a right to receive informed and compassionate care, and actively learning about and speaking up about your illness(es) and essential rights are integral to your survival.

And not just yours.

Note: Some of the links go to specific cases and while my intention is compassionate, I understand if you want the links to you or your loved ones’ cases removed and will do so at your request.

On the 25 of July, 2018, I under went a laparoscopy accompanied by excision surgery. I had a complete hysterectomy, meaning that while thankfully both ovaries were kept, everything else was removed – the tubes, cervix, and uterus. This was done because adenomyosis was confirmed, as well as endometriosis, which can cause ovarian cancer[1] in the long-term. Most ovarian cancer, the name being a misnomer (as the term for many women’s issues are due to lack of research and concern), at the root, has been shown to begin in the tubes.[2] Consensus is that taking the ovaries create unnecessary risks, and since endometriosis grows its own estrogen — something most gynecologists don’t know (and often don’t care to find out) — the ovaries have really nothing to do with its recurrence[3] – any endo (a single cell) that is left is what causes symptomatic recurrence. The lead surgeon, among the best in the world, assured me that all of the endo was almost definitely excised. I believe it. Because since the surgery, the only pain and discomfort I have had can be traced to normal post-op reactions. Up until surgery, I was having many endometriosis symptoms (not just pain) constantly — that means without interruption, not just monthly, weekly or daily — for almost a year. Prior to that year, I still was experiencing three or more symptoms at any given time since I was, at the oldest, five years old. There are a ton of symptoms that widely vary, including with which type, but given repeated sexual trauma as a toddler, it is likely that this is why I started showing symptoms prior to puberty. My case substantially supports part of Meyer’s theory over the two others in terms of the pathogenesis of the disease.[5]

 

My appendix was removed also due to endometrial involvement, and as I suspected (because I could literally feel it internally), there was a concentration of endometriosis under my left ovary.

Luckily, I did not have to have a bowel resection and only stayed one night in the hospital.

Medically cleared recovery after a surgery like this generally requires a full two months. Until mid-September, I am medically advised not to lift more than 10 lbs (much to my furbaby Oskar’s dismay – or rather mine, I guess – he tolerates being picked up but isn’t a huge fan of it), am discouraged to work my core a lot, and of course, cardio like HIIT, jumprope, and running are out of the question right now. Due to the removal of my cervix, I can’t swim, either, (which sucks, but it’s a small price to pay for my intestines not falling out or not getting infections). Thanks to medicine, I got through a clinic independent of the horror show network of doctors and hospitals I’d been previously saddled with, and I was starting to get into yoga, which I plan to return to with modifications. Thankfully, I rarely need the medicine – or any – now, although not completely (yet). I am continuing to take certain supplements, as even though it was very likely the endo depleting my vitamin B[6] and D3[7] stores, those are crucial for well-being, and it will take some time anyway for me to become nutritionally whole. I will also finish my bottle of turmeric (and may continue taking this supplement as well) and while I won’t be extremely restrictive with my diet, I am going to continue deeply limiting my refined sugar intake (a known inflammatory) and dairy. The doctor, while a lead surgeon in this field, is fallible like the rest of us, and being cautious will also slow the chance of recurrence if there is any endo left. Refined sugar is also, simply, not healthy regardless, and the benefit vs cost of dairy is arguable, not just in terms of individual health but global and environmental, too. Beef is another thing I’m not keen on consuming any more of, for both reasons as well.[8] However, as noted in the important sequel to the aforementioned article, one should also note that certain alternatives  (e.g. milk from almonds which uses a ton of water and land or milk from cashews which can easily burn – and mar – the hands of workers[9]) or strict veganism aren’t necessarily the best options, either.[10]

Continue reading “My Endo Story, Pt II: Surgery was a success. Now, to live life.”

“A Woman Now” By Veronica V. Hough — Burnt Pine

That July left a stain on her underwear—then-criminal, locking her wide, tearful eyes with its face, red with anger. She screamed with wounds, clawing the body that betrayed her, an attempt to claw out the bodies that broke into her eight years ago in a thicket sick with darkness. Honey, you’re a woman now (when […]

via “A Woman Now” By Veronica V. Hough — Burnt Pine

All we hurt when we hurt / The universal language

There is an importance to healing I cannot stress enough. Because I was so affected by traumatic abuse so early in childhood, my life, identity, and behavior have all largely been shaped by pain. Truthfully, I challenge the notion that even human beings from seemingly tamer backgrounds are not shaped largely in part by pain. When going over these sentences, I thought a more accurate description might be to add pronouns to these sentences — add perhaps “my” and “their” before “pain,” but that would only distance myself from the ultimate point. There are many layers to this post as there are many layers to every person. Layers vary and appear different. They can manifest differently, speak in different tongues, dress in different threads, dance with different motions, and while sentient beings all hurt in different ways to different severities and we express those agonies in different behaviors, perhaps the greatest irony of all is that the most universal element sentient beings share is what often isolates us most — pain.

Physical pain or severe physical discomfort, at their most banal, tell us something is “wrong.” A bone is broken, and it needs to heal, or a part of our body is exposed that should not be exposed — in the case of extreme cold or extreme heat or a wound — or that not enough blood is getting to our heart or that not enough oxygen is getting to our brain. Prolonged inactivity can also cause physical pain or severe physical discomfort because that in itself tells the body something is wrong and can make things go wrong further within the body. People struggling with their mental health often get caught in this cycle, because already we’re usually struggling with debilitating stressors (and chemistry).

It is important to note that there are medical conditions in which people have a total insensitivity to pain, however rare, but even in cases of extreme dissociation or Antisocial Personality Disorder (sociopathy and psychopathy) where emotional range can become limited, there is a current that makes us universally one, even if separating us in terms of our behavior or reactions to it: pain felt by the soul even if not always the body.

Continue reading “All we hurt when we hurt / The universal language”

Without faith

It is late, and snow is falling. It is very light, and it won’t stick anyway, but neighbors have bought their emergency milk and bread regardless. It’s not like the north where we were buried in snowfall, and I still had to walk to school. I remember the real cold, the brisk and bitter wind, the icicles hanging from the sad-looking houses. I miss winter. I miss the fall there. But I do not miss that town.

 

I’ve written about many people in my life, and some I’ve written about many times. I’ve written lives over, dreams over, nightmares over. I’ve rewritten songs to beats I could not keep and have cried over a thousand one too many melodies. Too many lyrics. Too many words. Too many thoughts. Millions. Millennia, all swimming in me, as if this moment will never matter, but it still hurts.

 

There are shadows I grasp at. There are apparitions too heavy to hold. I am a bearer of many observations, and I see things other people have not, cannot, and will never see. I hear radio interference, hissing voices bullying the airwaves. I pick up on pain you never knew you had.

Continue reading “Without faith”

The Analog Identity — Mothletter Studios

I never rest. Dreams are fragments to me of undercover lives; these lives lived, under covers, atop bedspreads, wear worlds only slightly off from the world in which I am writing this now. The realities are difficult to separate sometimes, twisting in me like bedsheets enduring a sleeping nightmare or a white-knuckled waking one. I […]

via The Analog Identity — Mothletter Studios

The flaw.

Fifteen years of therapy, eleven hospitalizations, in and out of partial programs, so many different services and different therapies (DBT, CBT, talk, etc.) Hell, I’ve even undergone ECT, (electroconvulsive therapy), and have had MRI, CT scans, EEGs, test after test, been on medication after medication, dose after dose, and I am sitting here on my couch, full of weeping lethargy but sleeplessness; a restless, nauseated anxiety and hunger for cessation and quiet. I feel so sad and so broken. Beyond tired, beyond depressed, beyond reparation. I know myself well. Years of [self-]interrogation, years of being poked and prodded by doctors, neurologists, psychiatrists, psychotherapists, counselors, and my own reflection have given me near crystalline photographs of my subconscious. I am betting I know myself more than most people know themselves. I am betting I understand myself more than most people understand themselves. And I am sure as hell that at this point, if I can be saved, only I can do it; and that, that is torture. 

Continue reading “The flaw.”