Health Update

It’s been a rough couple of months as my doctors lowered the dose of my pain meds. I’ve been done with the withdrawal process for a few weeks now, but as you may expect my baseline pain is higher now.

I’m trying to adjust to the higher pain levels, but it hasn’t been easy and I haven’t had much success so far. As a result I’m getting much less sleep and it is badly fractured, I have much less energy to do stuff, and I have to put a lot more energy into holding the line against my depression.

The silver lining is that I should be done with tinkering with my meds for the foreseeable future. (Potential exception: My Cluster headaches have been consistently more intense and frequent for a while now, so that may require some intervention if it does not let up.) We’ve been trying new meds, adjusting doses, and whatnot for the past year straight which has been brutal. (Pro: new anti-depressant is working out well; Con: less pain meds.)

My body is so glad that it is getting a chance to rest, and my mind is finally able to stop the constant intense monitoring that’s required with all of the adjustments. That’s particularly important as one of the main techniques I use to manage my pain is to ignore it, but the careful monitoring required me to pay consistent attention to it.

I would greatly appreciate any love, encouragement, gifts, pictures, stories, and empathy anyone has to spare.

Upcoming Withdrawal

Head in hands in pain

Here we go. Today I start a lower dose of my opioids.

I get why my doctors are forcing me to do this–there is a real abuse epidemic that needs addressing. As a result, (from what I understand) Kaiser now has a policy that everyone chronic pain patient must be under a certain dose, regardless of circumstance. I get it. But that isn’t going to make my withdrawal symptoms any less painful this week. And it makes me frustrated for so many reasons.

  • I’ve been on a stable dose for years. If I was going to have problems, they would’ve happened already.
  • Lowering my dose isn’t going to keep some other person from getting addicted. That’s not how it works.
  • I’m at no particular risk; I’ve even been at higher doses than this for long stretches and had no issues and experienced none of the problems/side effects that doctors fear might happen.
  • The various doctors and providers who have been tasked with getting me on board with this have all been careful to explain that there is a possibility that a lower dose will help my pain levels and/or have other helpful benefits. I point out that I’ve had my dose lowered before (multiple times), and my pain levels have risen as a result, and none of the other benefits materialized. Basically, we’ve done this experiment before and have already seen the results. Their response is always: *checks chart* “Oh, right.”
  • With each new doctor/pharmacist/social worker who talks to me, we go over what my current conditions are, and where my pain levels are at, and what I’m capable of doing, and what my trend-lines are. And with each answer, their responses are an increasingly despondent “Oh…” or a crestfallen “I see…” and it is clear that they feel like I should be upping my dose, not lowering it, but they’re not allowed to say that or do anything about it.
  • It does not feel like my particular best interests are in the forefront. While they are quick to point out that (theoretically) there is a potential chance that this will actually be beneficial, no one actually believes this is likely nor would they recommend this course of action without this policy forcing them to do so. But they can’t say that.

So I get to have additional suffering merely for the sake of numbers and stats. Yay!

If I’m extra cranky this week, now you’ll know why.

Personalized Cluster Headache Scale

I suffer from chronic Cluster Headaches. My meds generally keep them under control and keep them low intensity. On a typical day, I suffer 2-3 long-lasting KIP 2 or KIP 3 headaches.

However, for almost two months now I’ve been hit with a bad cycle of Clusters, getting hit with 2-3 long-lasting KIP 5 or KIP 6 headaches most days. I am exhausted and pretty miserable, though this is hardly the worst cycle I’ve been in. Unfortunately, there’s no way of knowing how long any given cycle will last for me.

For reference, here is my rough attempt to explain how the KIP scale (Cluster Headache pain scale that goes from 1-10) translates to me in particular: 

Cluster Headache (Personalized) KIP Scale

  1. Barely noticeable as a Cluster Headache at all. Equal to a typical person’s “Splitting Headache” that wrecks their day.
  2. A minor Cluster that does not require any alteration to the day’s plans. Equal to the worst headache a typical person has ever had.
  3. Very distracting, but can function as normal if needed. I’m going to be cranky if I don’t have a way to abort this. A typical person has never had their head hurt this bad without physical damage.
  4. We’ve crossed the line from “Good Clusters” to “Bad Clusters”. Can only function with exhausting amounts of concentration. I’m not sure typical person has ever felt their head hurt this bad unless they’ve suffered serious head trauma.
  5. Can only function in short bursts by using extreme concentration. Restlessness is inescapable.
  6. Crossed into “Intense” territory. Pain dominates my mind. Nothing can get accomplished. These are sanity warping.
  7. Pain is overwhelming. I cannot keep from rocking, or banging my head against things, or other physically painful activities in an effort to relieve my pain or otherwise distract myself from the pain.
  8. Crossed into “Devastating” territory. I am incapable of thinking of anything else. My world is literally nothing but pain. I am “lucky”–my Clusters have never gotten worse than a KIP 8. Can be sanity breaking.
  9. Cluster Headaches are known as “Suicide Headaches” for a reason–here’s where some Cluster sufferers start attempting it. You certainly can’t avoid considering it at this level.
  10. Doctors say that Cluster Headaches are the most painful medical condition that humans experience. This is that level. Some Cluster sufferers experience this on a regular basis.

On Mental Illness and Mass Shootings

So many thoughts about guns and mental illness.

1) There is no correlation between mass shootings and mental illness. Let me repeat: there is NO CORRELATION between mass shooting and mental illness. Are there some mass shooters who are mentally ill? Certainly. And that is because the population of violent (and evil) people is huge and naturally some portion of them will be mentally ill. However, the rate of mass shooters who are mentally ill is no higher than the rate of mass shooters in the general population. Stop throwing us under the bus. Stop deflecting from the real issues: the factually correct correlation is between mass shooting and the availability of guns (and also: history of domestic violence; and also white men).

2) Mental illness is a real problem. I am delighted that politicians want to provide us with additional resources and support. LOL! That never happens. Politicians insisting that treating mental illness will reduce mass shootings *never* results in actual material support–it results in increased stigma. And if it continues, I fear that the actual consequence of the false correlation will be that people with mental illness will start being arrested and/or criminalized for “the safety of the general population”, but really just for being ill.

3) There is an actual correlation between being mentally ill and being the *victim* of violence. Just like any other group that is underprivileged and/or less likely to be believed, mentally ill people are disproportionally the targets and victims of violence and abuse. Pretty much just because the perpetrators are that much more likely to get away with it.

4) There is a real correlation between mental illness and *self-harm*. We may not be particularly violent to others, but we are more violent to ourselves. We could use some real help here. Please help us!

5) For public safety I do think it should be really hard for someone who is mentally ill to acquire guns. And since we are no more likely to cause public violence, it should be *EXACTLY AS DIFFICULT* for the general public to acquire guns. Please regulate us–and do it by regulating everybody!!

Cis and Trans

Trans is a pretty inclusive term; it doesn’t just apply to the giant male-to-female or female-to-male cases. It can (but doesn’t necessarily) also apply to people who are non-binary, intersex, gender fluid, etc.

Here’s a decent explanation of what “Cis” (vs “Trans”) means, and since that definition does not apply to me (surgery was performed on me to forcibly conform me to male “norms”) that’s why I identifty as (kinda-sorta) Trans.

(I have some issues with how it’s worded (e.g. mutilation) and it’s a bit defensive, but it still gets the point across.)

This is an important part of my identiy because it is the source of my chronic pain and disability. If it didn’t impact my life so drastically, I would probably ignore this aspect of my life. But it does; so I don’t.

(This doesn’t mean that other people who have had a similar experience “ought” to identify as Trans–this is an identity that many don’t feel comfortable with, and it should not be forced on them.)

Cis is not a slur. And Trans should not carry stigma.

No need for "cis pride" the term is here to normalize transness and acknowledge that, if you're cis, your story is a…

Posted by Morgan Mahowald on Friday, August 25, 2017

What I wish people understood about depression

Depression can be, and often is, a fatal disease. Depression is (IMHO) the AIDS of mental illnesses. Although Depression is not as frequently fatal as AIDS, it works using a similar mechanism: AIDS doesn’t kill you directly–it disables your immune system, and then some other disease kills you while your defenses are down. Similarly, Depression disables your mental immune system. Your self-preservation instinct and your motivation disappear leaving you defenseless against other mental illnesses. Without your mental health immune system, you fall prey to addiction, your bad habits accelerate un-checked, your anxiety spirals out of control, your suicidal ideation becomes concrete.

If you don’t have depression, you have a chance to defend yourself aganst these antagonists (though it’s not easy even when you’re at full strength). But with Depression, these threats which are potentially lethal, become exponentially moreso.

People think that because Depression is all in your head, it can’t physically harm you. But it’s just not true.

Depression is Lethal. Treat it that way.

False Binary: Real Harm

[The following essay was published in the Fall 2013 issue of Cultural Encounters. I’ve reverted many of the editor’s changes which were made because the original phrasing was “too heterodox” for publication (for example, restoring the original title and thesis statement), made a few other light edits for accuracy and clarity (like updating the link in footnote 1 to a more current and accurate article), and reformatted everything for the web. Since the original publication I have stopped identifying as a Christian, for the reasons raised at the end of the essay and a number of additional ones as well. Also, I’ve come to embrace a wider definition of intersex and transgender than I held at the time of original writing, and now identify (if only slightly) as both.]

I am in unrelenting agony. My left testicle feels like it is being continually squeezed and yanked out of place. The sensation varies from gut-wrenching to unbearable. It is quite literally disabling. The intensity and relentlessness of the pain are such that I can no longer work or study, even when every accommodation I can think of has been made for me.

The origin of my pain is inextricably bound up with the false notion that gender is divided into a rigid binary. Let me explain.

Starting off life just a little bit different

I was born two months premature, back when that kind of thing was a real challenge for the NICU. I was also born with atypical genitalia,1 the primary manifestation being that my testicles did not descend: they resided permanently in my abdomen instead of my scrotum. This matter went unnoticed (or ignored, and rightly so, in favor of more pressing matters pertaining to my survival) during the frantic chaos that surrounded my birth. And so, when I was growing up, since my private parts (and everyone else’s) were private, I had no idea that my anatomy was unusual; I liked my body as it was and I never felt that my body wasn’t the way it should be.

It wasn’t until my first routine physical when I was ten years old that I discovered that my genitals were atypical. The differences weren’t drastic—I was just a little odd in a few ways. My doctor noted with seriousness that my testicles hadn’t descended. And then I was sent to more and more doctors and specialists for second and third opinions and consultations and options.

And in all the appointments, the poking and prodding, the hushed, serious voices, the failed attempts of one doctor in hiding his revulsion/disgust at seeing my genitals, none of it caused me to rethink how I thought of gender. My gender identity was male (as it still is), and I saw gender as binary because it didn’t occur to me that it could be otherwise. Learning that gender wasn’t a simple binary would have to wait almost two decades, when I would finally stumble across an article about people who were intersex—people who were born with ambiguous genitalia. If only I knew as a ten-year-old what I would realize by reading that article years later.

Sex vs. Gender; Gender Binary vs. Gender Spectrum

It will be helpful to pause at this point and define a few terms carefully, in particular, ‘sex’ and ‘gender’. Many people use them interchangeably, but that is a mistake that causes much confusion. Indeed, I prefer to use the phrases ‘biological sex’2 and ‘gender identity’ to help set them apart. Your biological sex is determined by what organs you have and their arrangement, which genitals and hormones and chromosomes comprise your body. If a person has typically female components/configurations, then their biological sex is female; if a person has typically male components/configurations, then their biological sex is male.

On the other hand, your gender identity is part of your identity—part of your self and how you see yourself as a person. Most people say it is part of one’s psychology. While I agree, I’m inclined to go even deeper and say that it (as with all identity relations) is a part of our spirituality, ontology, and sociality. Each society has its own notion of what it means to be male or female as a gender norm. So, we say, for example, “I am male” (i.e. “My gender identity is male”), meaning “I am a part of this group and follow these norms.”

For the vast majority of the population, their biological sex and their gender identity correlate very closely.3 Please note that neither ‘biological sex’ nor ‘gender identity’ has anything to do with those to whom you are sexually attracted. Sexual attraction falls under ‘sexual orientation’.

When people divide up humanity by biological sex, they usually categorize everyone under either ‘male’ or ‘female’, thus forming two monolithic groups with nobody in between. This move makes for a nice binary distinction: you’re either in one group or the other. But this highly inaccurate—there are people in the middle, but they are mostly hidden from view.

The article noted above told the stories of these people in the middle, people who at birth are intersex (e.g. people who have ambiguous genitalia). One such person told their story of having both a partially developed vagina and a partially developed penis. Another person had a shortened vaginal canal and undescended testicles. Another person’s biological sex was female despite having male sex chromosomes (XY). Many had surgery as infants to “assign” a biological sex to them to “reduce confusion”. Quite often that backfired, causing much more confusion when the child reached puberty and discovered what their parents and doctors had done to them.

What became instantly clear to me in reading such stories and reflecting on my own experience in light of them was that biological sex is not a rigid binary,4 but rather it is a spectrum of different possibilities that are very densely populated at the male and female ends, and sparsely populated in the middle by those who are intersex. Accompanying this realization was the corresponding discovery about gender: gender identity (which so closely correlates with biological sex) isn’t a rigid binary either, but is also clearly a spectrum5 of different possibilities that are densely populated at the male and female poles, and sparsely populated in the middle by those who are genderqueer.6

Suddenly, so much of my life and body and experience made more sense! I took a few years to research and digest and process it, but I feel like my gender identity fits me much better now than it ever did under the gender binary framework with its rigid and monolithic expectations. Those expectations lead people to think and feel that there is only a singularly right way to be male and a singularly right way to be female. Like many other people, I don’t fit into that rigid framework very well. Now if one approaches the subject from the vantage point of a gender spectrum, everything looks different: on this view, there is a whole range of ways to be male. From the vantage point of this approach, I see myself on the outer edge of the male territory, adjacent to the intersex/genderqueer territory.

There is a lot of privilege in being able to identify as male. Even with all I have gone through, I know I haven’t suffered but a fraction of what the intersex community and the genderqueer community have suffered. Still, I see them as my neighbors who have done a lot to help me. So although I identify as male, I stand with those who are intersex and/or genderqueer.

Gender Binary ➔ Surgery ➔ Unrelenting Agony

To return to the earlier discussion on my childhood experience, after seeing all the doctors and specialists and enduring their poking and prodding, furrowed brows and concerned and serious voices, finally the surgeons showed up and announced “Good news! We can fix you.” And by that, they meant that they could surgically bring my testicles into my scrotum and sew them into place. The doctors clearly said that this is what I should do and convinced my parents that this was the right course of action. As a ten-year-old Chinese-American and devout Evangelical Christian, I was compliant; I was always eager to do the right thing, even though I did not understand what was so “right” about what they recommended.

So I had the surgery and got “fixed”. Everything appeared to be fine, except that every now and then, if I sat in the wrong position for too long, my left testicle would start to ache. It was no big deal, but over time it got worse and worse until eventually I had to have another surgery to fix it. Things got better for a time, but then the pain resurfaced; and then not only did the pain come back, it intensified. More surgery came and went with the same results each time: (partial) relief for a little while, only for the pain to return in an increasingly severe manner. To date, I have had five testicular surgeries with the end result being chronic, grinding, disabling pain.

Perhaps the most frustrating thing about the whole ordeal is that my current doctors say that the first surgery was unnecessary and it shouldn’t have been done.7 While there’s no way to know for certain, we’re pretty sure that if I hadn’t had that first surgery, then I wouldn’t have needed any of the subsequent ones either. All of this pain could have been so easily avoided. All that would have needed to be done was for the surgeons to leave me alone.

The reasons given to my parents and me for the surgery were bad ones, though we/I didn’t know it at the time. So why was surgery suggested? Why was this option pushed so strongly? Why not just leave me alone? The answers always come back to the gender binary mindset and the associated notion that there is a right way to be male (and a right way to be female). Having undescended testicles is not the right way to be male on this view, and so it required fixing.8

I want to be clear here that I don’t blame my doctors or my parents. I believe that they were sincerely trying to do what was best for me as best as they knew how. But still, they had brought into their decisionmaking the false notion of the gender binary to disastrous effect.

With the previous point in mind, I want to express my deep empathy for people who are transgender. Not that I’ve faced anything like the oppression that transgender people routinely face, but I feel like my experience of not wanting or needing surgery and yet having it forced on me is the mirror image of many transgender people’s experience of wanting or needing surgery and being denied it. Their experience and my own are two sides of the same coin of the gender-binary smack-down: there’s a right way to be and you’ll be forced to conform.

Replacing the Gender Binary with the Gender Spectrum

The gender binary hurts everyone. It is most obviously harmful for the ones caught in the middle: intersex, genderqueer and transgender. The gender binary either refuses to acknowledge their existence, or it declares them broken. It is clearly harmful for people like me who are a little bit different; we can be forced to conform—surgically/violently. The gender binary is also subtly, insidiously harmful to the population at large: girls are held to an impossible physical standard; boys are shamed for liking anything that is insufficiently ‘macho’. Even when the gender ideals are adjusted to account for those who don’t embody the dominant culture’s ideal categories of femininity or masculinity, the overarching parameters of the gender binary enforce conformity and uniformity instead of celebrating variety and diversity.

Binary thinking leads to reductionistic and often painful, even oppressive results. Even minor deviations from the norm demand forceful (in my case surgical) solutions that can cause huge and lasting harm. Even with good intentions, this notion that there is something to be fixed is harmful, literally damaging. We need to switch from a “this is something that has to be fixed” binary culture to a “this is something to be celebrated” spectrum culture.

I am finding the struggle increasingly problematic in my Evangelical Christian community and am seriously considering leaving the Evangelical faith tradition in which I was raised. My question to my faith community and those segments of the population at large who still operate by way of the gender binary is: what are you going to do with someone like me?

2016 Addendum: Current Identification and a Few More Definitions

In the years since I originally wrote this essay, I’ve come to embrace somewhat wider definitions of Intersex and Transgender and now identify (if only slightly) as both.

Perhaps some new definitions are in order here. In the original essay, I left out the term ‘Gender Non-conforming’ for the sake of simplicity. Whereas we use the term ‘genderqueer’ for someone who has a non-binary (i.e. neither ‘male’ nor ‘female’) gender identity, we use the term ‘gender non-conforming’ for someone who does identify as ‘male’ or ‘female’, but does so in an untraditional manner. My gender identity is ‘gender non-conforming male’—gender-wise, I’m male with some quirks.

Now let’s revisit ‘Intersex’. There are many layers to biological sex; a non-exhaustive list includes: chromosomes, functional hormone levels, what organs you have, and how those organs are arranged. There is a ‘typical’ female configuration for all of these, and a ‘typical’ male configuration, but if any part of the configuration on any of the layers is atypical (i.e. non-binary, i.e. not strictly-male or strictly-female), then you qualify as intersex. It’s a spectrum—a pretty broad one at that—and more people technically qualify than they probably realize. In my case, essentially, I had male organs in a female arrangement (my testicles were where ovaries would typically be). This is pretty minor as far as intersex goes—basically, I’m biologically male with some quirks.

I use that phrasing to draw the parallel between my biological sex and my gender identity. In fact, I’m going to make up a completely new term here (seriously, no one else uses this term, I’m making it up new): (Biological) Sex Non-conforming. So now I can say this: My biological sex is sex non-conforming male, and my gender identity is gender non-conforming male. They aligned nicely, didn’t they. Neat!

Now let’s revisit ‘Transgender’. Someone is transgender (or just ‘trans’, for short) if their biological sex and their gender identity don’t align.9 Conversely, someone is ‘Cisgender’ (i.e. not Transgender) if their biological sex matches their gender identity. So in my case, I was born Cisgender—sex non-conforming male matching gender non-conforming male. But because of the gender binary, doctors “transitioned” me to a more conventional male sex, bringing me out of alignment and I was made Trans.

Admittedly, my sex non-conforming was minor, and my misalignment similarly slight, and if that were all there was to it I probably wouldn’t bother identifying as Intersex and Trans. But I could feel that my testicle was out of place. It felt wrong. And that feeling of bodily wrongness is called ‘Dysphoria’, which is a classic trait of being Trans.10 Now, if it just stopped at that minor dysphoria, I still probably wouldn’t bother identifying as Trans because the dysphoria was easily ignorable. Until one day it wasn’t. And then not only was the dysphoria not ignorable, it was painful. Then excruciating. Then disabling. And now the pain is a fundamental part of my identity, and as a result, Intersex and Trans are also fundamental parts of my identity.

Beware the Ide(ation)s of March

Ides of March

I’ve suffered off and on with Depression for decades now, and while I can’t really anticipate it, I do have a sense of its rhythms and patterns. I learned early on that Seasonal Affective Disorder (SAD) played a factor–my Depression and its attendant Suicidal Ideation would loom larger in the darker months of the year. It soon became automatic for me to be extra vigilant in February to keep my Depression from spiraling out of control in the coldest and shortest month.

But you can only be vigilant for so long. When March would arrive I’d unconsciously exhale and congratulate myself for my good mental health hygene. Then I’d let down my guard, stop paying attention to where I was going, and inevitably trip and fall into a SAD-induced morass of desolate ideation.

I did this probably three years running before I caught on to the pattern and realized that March was actually the more dangerous month for me. So now I know: be cautious in February, but save the real vigilance for March.

Familiar Territory

Depression has pretty much swallowed me whole for the past month or so. I had been making lots of progress on the depression front through the past year, and even just two months ago I was in relatively good shape with my pain levels (relatively) low/stable and my depression concomitantly low to match.

However, depression is a stubborn beast and it managed to slip through some unknown crack in my defenses. The drop was swift and left my stomach in my throat and when I managed to get my feet back under me I found that a whole month had slipped by without me having any awareness of it.

The good news (to the degree that there is any good news in this) is that some of the progress I made over the past year stuck with me–a prominant feature of my depression in the past was suicidal ideation and that was noticably absent this past month.

The bad news (of course there is bad news) is that it did not last. Two days ago I had something like an anxiety attack and my defenses gave way and the suicidal ideation returned in full force. It has since faded a bit, but it is discouraging to have lost that last bit of progress. Three days ago I felt like I had been stranded with no wind while sailing in uncharted waters. Now at least I’m in familiar territory.

Crossed Signals

My body is doing this weird thing where it interprets hunger as nausea. So when I go a while without eating, my stomach will start feeling bad and the feeling will keep growing the longer I don’t eat. But since the underlying issue is actually hunger, once I eat something I invaryingly feel fine.

Of course, the problem with this is that the more nauseous you are, the less you want to eat.

It’s not totally consistent–some days I get hungry as normal, other days I’m all flipped around. It’s been going on for about two weeks now. I’m doing fine today, and yesterday was OK as well so maybe I’m pulling out of it? Hopefully? Luckily, years of battling chronic illness has made me accustomed to doing what’s right for my body despite the crossed signals it is giving to me.

The frustrating thing about this is that I use food as a kind of CBT pick-me-up to fight my depression: I consiously use pleasant tastes throughout the day to interrupt my misery. This is much less useful when the pleasure of eating is swamped by nausea.