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.”

Authenticity: Its meaning & benefit

Authenticity may hurt you, but major parts of it are accountability and self-knowledge, both of which are vital to personal, individual healing. And contributing to healing beyond your own universe, too.

“Knowing yourself is the beginning of all wisdom.”

Paraphrased from Aristotle, this concept has been key, above all others, to my personal development. For me, it is not just about identifying what you do and why you do it, but also what you can do, as an individual, to strengthen positive behaviors and reduce negative ones. Self-knowledge is not armor; in fact, it is far from it. It is not a shield or a helmet. It is calcium to edify our bones. Its purpose is to grow and strengthen in that growth; to identify and take accountability; to have compassion and respect for ourselves and not enable our vices in pursuit of doing so. True self-knowledge is the first tool in countering stunting and regression. I read an article once claiming that “know thyself” is a dangerous maxim because it indicates some kind of permanence, or “being stuck.” The article implied that this could happen because if a person has identified their values and circumstances change that contend with those values, that person will refuse to adapt because it “feels unlike” their interpretation of themselves. That is not self-knowledge. Our values, circumstances, feelings, and ideas are impermanent. As human beings, we are the most adaptable animal in the world. We are nearly limitless and have evolved for ultimate survival, even in our clawless, fangless bodies. It then makes sense that the human mind, the most significant key to our advancement, is also the most significant to our downfall.

Continue reading “Authenticity: Its meaning & benefit”

“Freedom is what you do with what has been done to you.” – Jean-Paul Sartre

I haven’t been hiding that the disease I am trying to manage right now (endometriosis) is both horrific and all-consuming and that I feel that is in fact quite literally killing me. I have had near-death experiences before and in April I did die for a time, or at least was closest to death than I ever was, being in a coma and consciously having to make the choice to stay alive. I didn’t choose to live because I felt I had to tie up loose ends. I chose to live because amindst all of the darkness, I was able to find hope that I could get effective treatment and live a life I wanted to live. That treatment is still far away even with the help I’ve been receiving and am very grateful for, and I may not get it before my insides are scarred beyond functioning or I develop serious heart problems[1] or cancer.[2] (That being said, I know I am being extremely annoying about this, but I am literally pleading for my life and trying to get the information out there to save others’ as well.) There are a lot of things I want to do and can’t, but I’m focused right now (and trying to stay focused) on what I can do.
Blogging has been helping me deal with this along with other issues, and I intend to start vlogging about endometriosis and my case specifically very soon. I will not let my suffering be meaningless when I have learned and experienced so much that can contribute to others getting help sooner.
Part of living the life I want to live is becoming who I want to be. I have many limitations right now of many varieties, but I can choose to continue working on myself, regardless of how little time I may or may not have left. Truthfully, I think that is the most honest motivation for this blog in particular. Helping others and advocacy are both integral to my soul’s survival, a huge part of who I want to become, and while this blog does not have a big reach and has probably not bettered anyone else’s life, it has helped me greatly, I have learned better to self-advocate, and so my entries here have bettered my own life, all of which have helped equip me with better skills and ability to reach out to others more effectively elsewhere.
Recovery is not a destination but a process.
This is, indeed, truly a recovery blog for me.
That being said, there are things I talk about here that I feel I need myself to embrace more fully. We are all hypocrites in one aspect of our lives or another, whether always or in certain instances, but hypocrisy is something I have been working very hard for years to get out of my system. I know it will never be 100% out. I am human. I am fallible. But I am human, which means I also have a great capacity to change and take charge of my own behavior.

Continue reading ““Freedom is what you do with what has been done to you.” – Jean-Paul Sartre”

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”

I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)

I have always lived life feeling outcasted. In fact, it was such a problem that my mother specifically bought a book for me entitled Leo the Lop, in which a lop rabbit whose siblings have upright ears, sets out on a quest to define what “normal” really is. Throughout the course of the book, the charming illustrations depict Leo’s journey of self-discovery which ultimately ends with the absolutely dissatisfying conclusion that “normal is whatever you are.”

I liked rabbits, I understood Leo’s wishes, and I was five, so I enjoyed the book, but upon closing it and going into kindergarten the next day, I was viciously reminded that regardless of what Leo thought normal was, my classmates did not share the same conclusion.

I have never been normal, no matter what I have been.

I recognized at that time as I still do that the whole argument for “normalcy” is supposedly subjective, and that was the point of the book. There is no straight, wholly accurate definition for what “normal” really is, and as Morticia Addams so eloquently puts it, “What is normal for the spider is chaos for the fly.”

Abnormal Psychology

So, there being no true definition for “normal” in terms of human behavior and character what must “abnormal” mean in psychology, which is, by very definition, the study of human behavior and character? because it does exist. It does exist, and I do find it funny, considering that according to NAMI, 1 in 5 American adults experiences mental illness during a given year[1]. And let’s not play dumb. We know that’s what psychology means by “abnormal.” Forget that by mere observation, anyone aware enough can tell you healthy lifestyles — both physically and emotionally — are difficult to achieve and maintain even with the right circumstances, let alone being in positions in which you greatly lack resources or a support system. Forget that by mere observation, it is pretty obvious human beings are prone to unhappiness, dissatisfaction, and deteriorating health if not regularly maintained, regardless of whether or not they meet the criteria for a diagnosable illness. However, ask many professionals in the psychiatric industry, and they surreptitiously will tell you two conflicting things. First, out of their mouths will come, 1.) “There is no such thing as ‘normal,'” and then, throughout the course of treatment, you will start hearing the real message, which is, 2.) “But you are part of an abnormal statistic.”

“Diagnosing” the DSM

If you’ve been reading my blog for a while, you’ll probably know already that I am highly critical of psychiatry. I support psychiatry to an extent and am a strong believer that many people cannot get by without it. However, I am an extremely strong advocate for patient advocacy, therapies, and self-assessment and awareness. It is not a secret or at least should not be a secret that doctors are able to accept “legal” bribes from pharmaceutical companies[2]. This is a way of developing and testing drugs, but let’s also be clear that it is another way doctors make more money, and it is extremely controversial for what I feel are extremely obvious reasons.

It is not entirely the doctors, though. I feel many times, especially in psychiatry, prospective or even well-established patients will come in and expect not only a prescription but also expect a prescription to solve their problems. That being said, they will also expect a diagnosis. Antidepressants are often called “happy pills,” which is not only grossly misleading but also toxic. While depression is sometimes organically chemical and is definitely affected by chemicals, I feel depression is more often situational or circumstantial, due to things that are entirely fixable with the right resources and support that do not involve drugs. Those fixable things include diet, activity, interpersonal skills, intrapersonal skills, stress management, etc. I feel drug intervention can be necessary to break the cycle of depression which I’ve said before is often a Catch-22 even in circumstantial depression, but I feel psychiatrists overmedicate needlessly without offering much authentic help.

Overmedicate. And overdiagnose. Which leads back to the question, what have I been?

Childhood on Drugs: A [Super]Brief Psychiatric History Snapshot

When asked by any new psychiatrist, “What meds have you been on in the past?” I always have to laugh. Not just snicker but throw my head back and give a hearty, long-lasting, “you’ve gotta be kidding me, I hate this question” type of laugh. I usually follow with, “Do you want me start from my infancy or skip to when I was prescribed Ritalin for ADHD?”

“ADHD?”

Yes, ADHD.

It was the 1990s in the United States, and ADHD was the illness du jour. I was often restless and excitable and had difficulty focusing. Also, I was an insomniac. These symptoms were mistaken for the whole criteria of ADHD after I was taken to a psychiatrist who met me for 15 minutes and decided “what” I was. I have learned since that this was how I responded to change, disorder, and attachment as a child. My restlessness was part of a much bigger problem, involving compounded trauma.

I was about seven at this time and was often in the nurse’s office complaining of real headaches, stomachaches, and other aches and pains, as such with many children who have undergone or undergo trauma. I would stay in the office for quite a while, not wanting to go to class because of pain and discomfort that I realize now were manifestations of serious emotional distress and medically real, too, in the sense that I was already suffering symptoms of endometriosis.

I had other symptoms and contributing factors, as well, that the psychiatrist did not bother to explore. I was hypersensitive and felt chronically lonely, unheard, and felt the responsibility of everyone else’s happiness on my shoulders. I had terrible nightmares and feared men — not monsters — being under my bed.

I felt filthy and disconnected from my body and often felt I was being watched and often stayed up nights at a time, thinking that if I awoke I would be in a UFO and being dissected on a table. I let people throw rocks at me until I bruised because I thought that’s what it took to have friends. I suffered from chronic pain, particularly joint paint, and of course, I felt absolutely like a freak: in the classroom, in my town, in my country, in my home, everywhere. In fact, I started believing I wasn’t even human. But I was put on Ritalin, Concerta, Strattera, Adderal, because according to the psychiatrist, I was a seven year old psychiatric patient who had ADHD. My last diagnosis apart from PTSD was Schizoaffective Disorder which is in all fairness, similar, I suppose, to Bipolar disorder, which is difficult to differentiate from ADHD in children[4]. Funny thing is, Adderal, among many other stimulants, is known to exacerbate and even create psychosis[3].

**It turns out I am not alone with hallucinations or paranoid thinking in terms of PTSD only, and I do not match the necessary criteria for Schizoaffective Disorder. I suppose another “du jour diagnosis” by doctors who do not listen carefully. I have been off antipsychotics since October and have had minimal auditory hallucinations that ended completely by February.**

I have had to deal with other what I consider are “diagnoses du jour” that have only been combated through advocating for myself. I have had maybe the help of one or two professionals throughout my journey who have taken the time to try to understand me. For a lifelong history in treatment, that is grievously sad.

In the psychiatric profession, there may be no normal, but I suppose there is a way to be normally abnormal, and I am not it, either, even though they want me to be.

They’re not all wrong though, because I do think some people are.

It’s all about that Taste Bud Principle, even though it’s also not

While there are many people in mental illness advocacy, I constantly see two messages that are both extremely pervasive and probably extremely confusing to people who do not understand other people, regardless of whether those people are diagnosed with or have a mental illness, the same mental illness, or do not have any mental illness at all. Those two statements are: 1.) Do not pity us. We are the same as everybody else. 2.) Treat us more sensitively, because we struggle differently than you do.

Continue reading “I am neither the CEO on Prozac nor the ward of the state in the quiet room (updated 09 May, 2018)”

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”