Personal Blog/Diary

Here I write about anything and everything.

Shake up at my church leaves me heartbroken

So after the spiritual crisis I described in the last three posts–here, here and here–I went back to my church and there was a General Assembly, later than usual, and scheduled last-minute.  My own issue with the priest had been resolved; I caught wind of a few complaints over the past many months, but didn’t think it was of much importance.  To my shock and dismay, the General Assembly turned into a verbally abusive tirade against the priest, along with a litany of complaints–none of which had anything to do with my own issue.  They all seemed to be about him not doing things exactly the way some people thought they should be done.

Now, I’ve been there long enough to see two other priests, and there have always been complaints about something or other that the priest does or doesn’t do.  I was not expecting this level of vitriol, or the division.  I have to wonder if things were percolating in the four months I was gone, and that’s how I missed it all.

Another thing I learned is that despite his praise of things said at the local Ephraimite monastery, Father does not seem to be an Ephraimite himself.  It’s just one person who is an Ephraimite, a new member of our parish, and their views are not shared by others.  (I explained Ephraimites here.)

As of today, it’s been a month since that General Assembly, and we have no priest as of yesterday.  There is a shortage of priests.  I have no idea what’s going to happen with our church.  The parish president, my beloved friend, assures me that not only am I still welcome there no matter how liberal my beliefs are now, but that we will get through this and survive as a church.  But I still doubt because other parishes have closed around us.  There is only one other church left near us, and that’s in the next county.  I fear that despite my hard decision to return to my church, there soon will be none left and I’ll still end up going back to the Protestant world.  The local ONA UCC church would be my refuge, as–in his latest sermon–its preacher said it has been for others in the community.  But I would be heartbroken to have to leave my beloved church of about 17 years, and all the relationships I’ve formed there.  It may be a crazy family, but it’s MY crazy family.

Please pray for my church and for me.

A song for the dark night of the soul–and deer videos

Once again, it was time to pull my favorite Gary Numan song out of the drawer and play it over several times because of my recent faith crisis.  (I got to hear him sing this in person a year ago, the same night he found out he had COVID!  lol )  Now there’s something else going on which I don’t want to talk about online, though I have a little Notepad file getting all my deep dark secrets.  So I’m going to post this video in honor of that as well as the past four months of spiritual despair and heartbreak, which all seemed to be healed by hugs from three people on Holy Friday night:

 

Now for a video of the four deer living by my house.  Ever since last spring, in the warmer months they come out of the woods at dusk or cloudy weather and graze in the field behind our house:

 

So I went back to my church

In my last post, I spoke of issues with my church turning fundie, and fearing I had to leave it.  Some people may think, Well this is what Orthodoxy is–Didn’t you know this when you converted?  Especially nowadays, various bloggers and celebrity priests and Youtube influencers have gotten people thinking that Orthodoxy means right-wing views on both politics and religion.  David Bentley Hart has joked that American Orthodoxy is now “a wing of the Southern Baptists with incense.”

But no, actually, it’s a small-town Midwestern Greek church, mostly cradle, where the people have more modern practices, women have fought for more equality and leadership in the church, and–unlike what I hear about the big-city ethnic churches–actually welcome in newcomers.  You don’t have to be Greek; you don’t have to wear a headscarf; you don’t have to obey your husband; women can read and chant and sometimes even help the priest during services.  You don’t have to follow all the fasting rules; organs are fine and pews are welcome; birth control is okay.  Some people are Republican, even Trumpers; some are Democrats.  Some have more traditional views of–well, everything; some are more progressive.  I came here not for strict old-fashioned practices and patriarchal society, but for mystical spiritualism that says God is love and NOT wrath.  This is why I, deconstructing from Evangelicalism and leaning liberal, was able to come into an Orthodox church and stay there for about 16 years.  Any convertitis I felt back in 2006, under the influence of people I met online, was quickly tempered by assimilating into what some would dismiss as an “ecumenist” or “modernist” church.

The trouble came when more traditionalist and Republican views seemed to start coming in and taking over.  A nearby right-wing monastery under Elder Ephraim has been gaining influence when I never heard much about it before.  The new priest began channeling Tucker Carlson–even said the local nuns were “praying for Kyle Rittenhouse.”  He’d say in one breath that our church is not racist or against people who are LGBTQ, then in the next say God didn’t make anyone trans and complain about CRT.  Pull your kids out of the public school because they’re influencing the kids into being trans, he said.  This government is evil, he said.  I began to fear that I couldn’t be an ally for racial and queer justice and stay here.

This is why I left right before Christmas.  Well, physically left.  I didn’t officially leave because I don’t make decisions lightly.  I have to research and ponder first.  I’ve left churches before, but never did I have so much at stake.  I’ve put 16 years into this church–studying the doctrines and why they do things, learning to talk to saints and use icons, learning how to fold palm crosses, decorating, reading Epistles and a good chunk of the Holy Week readings every year, Greek Fest, running the website.  They’re family: parental figures, grandmotherly figures, siblings, now a new generation coming in and converting and possibly becoming like one’s children.  I have a BFF and occasionally the Greeks will flirt with you.  Especially for a transplant from another state, finding chosen family is a big deal.

Christmas came; instead of church, I was home nursing a dying bird.  (RIP Spice.  🙁  )  I stayed away for nearly four months.  I kept dreaming about people from church.  I researched–the results of which are in the last post–and checked out local liberal churches online.  (The local ONA UCC church has an AWESOME preacher.)  But for the past month, I realized I’d have to make a decision whether to come back for Holy Week.

My stomach twisted; I didn’t know what to do.  I was told the priest had stopped talking politics.  I didn’t want to give up icons or my patron saint (Gregory of Nyssa, the universalist).  People like our progressive archbishop and David Bentley Hart and Archbishop Lazar Puhalo are Orthodox.  I missed people and felt very lonely.  Holy Week came and I decided to do the fast.  We didn’t have the usual number of services; I missed Wednesday and Thursday, feeling headachey and reluctant.  I missed the Friday afternoon one.  But I finally went to the Friday evening one.

I got a warm welcome.  People missed me.  I got hugs.  The priest smiled and said something like, “Hey stranger, where have you been?”  The people I missed the most were the happiest to see me.  One of them, the president, basically filled in my stewardship card for me and before I knew it, my membership was renewed another year (I’d been holding off on it).  “I see what you did there,” I thought with an inward chuckle.  Then at the Paschal service, my BFF–who told me he’d be working the whole week–showed up at some point.  I didn’t know it till I was walking downstairs after services and he hit me on the back.  lol  We connect on social media all the time, but he lives in another town and works a lot, so I hadn’t seen him in MONTHS.

I still have the same issues with the church.  But I decided to give it another chance.  I seem to go through periods of doubt every five years; just as in the past, the people kept me from leaving.  Maybe I can have some influence, too.  We’ll see how things go.

Universalism, Fundamentalism, and I think I took a wrong turn

Buckle in; this is a long one.  So I just finished reading (finally) David Bentley Hart’s treatise on universalism, That All Shall be Saved: Heaven, Hell, and Universal Salvation.  I avoided it for a time because of a disappointing review by my good friend Giacomo (here).

But it lays plain the very thoughts I’ve had about Hell for many years, starting with a story of an autistic child traumatized by the realization of what Hell means.  I was that child myself, 40 years ago, and the trauma never left, leading to a spiritual OCD or scrupulosity of the type often experienced by those of us raised in fundamentalist religious groups.  Not only did I fear that one unrepented slipup before death could lead to eternal Hell, but I constantly inwardly groaned for and prayed for the souls of both the dead and the living, afraid that most of them were in Hell, including all Catholics born before Luther came along (because they–I was taught–went to Hell because nobody knew to say the Sinner’s Prayer).

I inwardly groaned constantly in prayer for the souls of the 3000 killed on 9-11, especially when the pastor in our EFCA church said most of them went to Hell.  One day on the way out the door to work, I thought of a hypothetical Muslim woman living her life in, say, Saudi Arabia just as I would do, piously following her faith, doing housework and taking care of kids and dealing with husband and the like, then going to Hell because she wasn’t a Christian.  None of it seemed fair, yet my religion told me my doubts were heretical.

I looked at the Separation of the Sheep from the Goats again, and none of it said people who weren’t Christians went to Hell.  It was all about behavior: who cared about their fellow humans, and who didn’t.  I even wrote this down.  Yet I felt like a heretic.  Several years later, it was a relief to find that Orthodox thinking was the same as mine.

When I turned away from Evangelicalism entirely and into the Presbyterian Church (USA), I thought I was done.  This was a moderate church, so as I said, I could go back and forth from conservative to liberal and back again and stay in the same church.  I was interested in their views on abortion and gay rights, which seemed refreshingly moderate.  Then I read in the denominational magazine that there are universalists in the church and this is okay, so I started seeking them out.

I learned about five patriarchates in the Early Church and universalism being the accepted view, and looked for historical backing for this claim.  I asked my new Orthodox friend Richard (the Narcissist) what Orthodoxy says about this, and it seemed to back this up.  Treatises such as the River of Fire and St. Gregory of Nyssa’s On the Soul and Resurrection made my heart erupt with joy and stop doubting or despairing over the existence of God (at least temporarily).

At first I looked at Orthodox beliefs and despaired that I couldn’t join that church because of its regressive views on homosexuality, women, and abortion.  But I kept researching Orthodoxy and couldn’t resist the siren call of the theology, the artwork, the incense, the supposed ancient Christianity (as opposed to endless variations of Scholasticism, Reformation, Wesleyism, Pietism, Calvinism, etc. etc.).  Now we had the Energies of God, Tartarus and Hades and Gehenna instead of Hell, no Total Depravity, no Wrath of God, no Penal Substitution…. It was like a dream.

Incidentally, as I work on this, the song Wings of a Butterfly by HIM has come up in my Master Playlist, which is my media playlist of all my records and tapes and CDs, digitized and combined with all my MP3s.  That song came out while I was researching these things, and I played it over and over again late at night while the household slept and I surfed the Web for information on Orthodox theology.  It reminded me of this search and of Richard, who I was also talking to about Orthodoxy.

St. Gregory of Nyssa became my patron saint.  I got the name “Nyssa” in my Internet handle from Doctor Who, but discovered St. Gregory’s name in an encyclopedia one day in my teens, which surprised me.  I didn’t know Nyssa was a real name, rather than one made up for the show.  It used to be “Nyssa of Traken,” later dropping “of Traken” because some BBS bullies turned it into NOT, but picking up “the Hobbit” in 2001 because MSN Messenger said there were too many Nyssas.  It was only later that I knew anything at all about St. Gregory of Nyssa.  After I learned he was a universalist, I also learned he was a kindred spirit, so I took him as my patron saint in 2009.  Now I learn that DB Hart is enamored with St. Gregory as well, and I think, “Another kindred spirit!”

For many years, I was satisfied in Orthodoxy.  The doctrine was perfect; my church was ecumenical and allowed for different opinions on politics and religious practices; there were no headscarves or Harry Potter hatred; women wore pants and sometimes even tennis shoes in church; women did the readings and had a lot of power in the church; nobody talked about Toll Houses or Father Seraphim Rose; wives held jobs and used birth control; it wasn’t at all fundie.  To this day I have no idea how the priest in those days voted.  His daughter was definitely a liberal.  The Net-o-doxy I found on Internet forums was just a strange strain of fundamentalist fervor that had nothing to do with real-life Orthodoxy.  Richard told me not to let the Net-o-dox keep me away from Orthodoxy.

At first I still followed the idea I’d been raised with, that the Church and the Bible define what is correct; I was moving in a liberal direction regarding all sorts of things, but some quotes from the Fathers convinced me that original Orthodoxy condemned abortion, homosexual behavior, etc., so I had to go with that.  The Net-o-dox also got me thinking for a time that the Right way of doing things was for a parent to stay at home with the children rather than using Day Care.  My liberal drift was temporarily halted.

I’m not exactly sure why I veered back on track again.  Something hit me one day and made me think I was spending too much time on the Orthodox forums and needed to get back onto the Goth forums I’d been neglecting.  Shortly after this, the spell was broken, my mind cleared, I started looking more at science instead of religion for science facts, remembered that women should do whatever is best for their family, started watching the Daily Show and Colbert, and wondered what had come over me.  But I stayed on the Orthodox path, joining officially in 2009–completely coincidentally on the feast day of St. Gregory of Nyssa.

Now I fear that I may have made a wrong turn somewhere.  For one thing, I never have reconciled myself to the church’s insistence on full burial instead of cremation.  It seems a waste of money and usable land to me.  But I had other things to think about.  In the past decade, I was distracted by things like recovering from the narcissistic abuse and spell put over me by Richard and his wife, then the fear and loathing brought on by a narcissistic sociopath named Trump becoming president.  2020 came and COVID brought out the worst in people, severing relationships and showing us just how sick this country is now.  Fascists and their guns are threatening the peace of everyone, shooting up shopping malls and schools, threatening officials, rumbling about Civil War.  There was no time to pay attention to what was going on in the Greek Orthodox Church of America.  I had no idea until it hit my own church.

Our Archbishop said we could use separate spoons for the Eucharist when the churches opened up, but all of our Metropolitans refused.  So I refused to go to church until I got my vaccine.  So we were to follow all these rules of social distancing and masking, yet share a spoon with a couple dozen other people?  We might as well sit next to each other and breathe on each other!  Believing the Eucharist protects you from disease has proven to be magical thinking and false; not only did I find anecdotal evidence of disease spreading that way, but there were news reports of COVID spreading through Serbian Orthodox funerals.  I write about this here.  But finally, just in time for Eastern Palm Sunday 2021, I had my J&J shot and the antibodies had time to propagate.  I came and I shared the Eucharist for the first time since February 2020, when we celebrated the retirement of our last priest.

Then after church, as I waited by the door for my husband to pick me up, a new person I didn’t know started yelling and screaming and pointing her finger at the parish president and some other new person I didn’t know.  I’d seen her online, so she’d been masking up for a while, but for some reason she chose this day to yell about it.  She said that in Greece they call them “clown masks” and that the nuns at the local monastery were trying to get rid of the Metropolitan for requiring them.  Another person I knew rolled his eyes; the other new person said to the president, “She’s right.”  I was tense and upset and wondered what the frick was going on in my church.

In the time since, I’ve discovered things changed a lot in the COVID year.  New priest, new people, new influx of tales about what the nuns in that monastery say about this or that.  Visits to the monastery.  Politics and culture wars in the sermons.

Going through old posts on my blog, I’m reminded that I’ve doubted my conversion in the past, but chosen to stay put.  These posts are here and here; they go into detail I don’t have time or space to put in this post.  They’re from 2013 and 2018–so, basically, every 5 years is a crisis of faith over one thing or another, and something makes me stay put.

But my liberal beliefs are staying put as well.  I’ve put 20 or 30 years of thought, observation, and research into them.  Up until now, I was able to keep going to my church despite them.  But what happened in the COVID year to change everything?  How did we go from priests who don’t tell you how to vote or think, to a priest who tells you the right thinking about everything from what school to put your kids in to what party to vote for?  How did we get a priest who says the government is evil?  Sure I’d hear things like this in the church basement from parishioners or the archon.  Sure the last priest occasionally complained about culture wars.  But I could roll my eyes and ignore it, keep going on, remember that we have Democrats in the church.  What changed?

I’ve been doing research, posts on Reddit, Google searches, whatever I can find.  And this sums it all up:

The Greek church in America has been infected by a network of spiritually abusive, fundamentalist, and financially/ethically questionable monasteries planted by the late Elder Ephraim.  While I enjoyed the peace of my own ecumenical church, Ephraimite teachings have been spreading throughout America, especially in my own Metropolis.  Many people–fervent believers, active in their churches, NOT Easter-Christmas Christians–have left the church over this.  A decade ago, a Monastery Review Committee was even put together to investigate these monasteries and make recommendations–only to have their report put on a shelf six years ago to never see the light of day.

My research has revealed that I, with my liberal ideas and horror at Ephraimite teachings, have a LOT of company in the Greek church.  Many people just like me have hoped the archdiocese will become more open and inclusive to both women in clerical roles and LGBTQ+.  But of the many issues causing parishes to leak members, this spread of Ephraimite ideas is one of the major reasons devoted members of the Orthodox church are leaving it for good.  There have been reports of people going into the monasteries and being spiritually abused; one person, Scott Nevins, even committed suicide on the steps of the Arizona monastery.  I never heard about any of this until now, even though it all happened in the past decade.  And our local monastery, part of the Ephraimite network, keeps popping up in reports I find.

Ephraimite ideas include the Aerial Toll House heresy, encouraging married couples to live as brother and sister, fundamentalist practices for women, us vs. them, following the Elder and not ecumenical priests, they’re “spiritual” and ecumenists are not.

Some of the Ephraimite ideas remind me of things Richard told me back in the long-ago times: his complaints that my church was too ecumenical, too Western.

I fear that Richard’s influence, and a spell woven over me by love-bombing Orthodox forums, may have led me in the wrong direction.  Don’t listen to the Netodox, they said.  Don’t listen to the fundamentalist sites; they’re not truly Orthodox, they said.  Now there’s been a fundamentalist backlash all across this nation, and it’s infecting politics, culture, Catholicism, Orthodoxy, Evangelicalism, everything.  We have conmen such as Jay Dyer, the Monomakhos site, Josiah Trenham, and others, telling us falsehoods about religion and politics, and saying this is Orthodoxy.  The woman-hating incels and MRAs are telling us to reject feminism and be manly bodybuilders if we want to be Orthodox.  I never used to hear about this local monastery at church, but now I keep hearing in sermons and in the basement what the nuns think about politics, COVID, burial practices, religion….. Now we’re doing annual trips there.

One sermon praised Kyle Rittenhouse and said the nuns were praying for him.  Another denied racism exists in the church.  Another said that teachers are making our kids trans, so we have to pull them out of public schools, and we have an evil government, and oh by the way, don’t be afraid to discipline your kids.  (“Discipline” in what way, exactly?)  God doesn’t make people trans, that sermon said, so teach your boys to be men and your girls to be women.  Then after the sermon, a parishioner went up to the priest and said, “I blame the parents.”

That was three months ago.  I haven’t been back since.  That was my What The F*ck moment, though really it was the culmination of a series of WTF moments.  But I haven’t officially left because my mind is still reeling, my heart is still sunk, I found a potential new spiritual home, but just jumping out of my church home of 16 years is frightening and dismaying.  I fear letting people down.  But I look around–Reddit, Facebook, Twitter–and find many other Orthodox believers who have either left the church or are seriously considering it over these same things.

Here are my best sources of information on the Ephraimite monasteries, including a blog post written by one of the members of that Monastery Review Committee:

What is an Ephraimite?

Go Truth Reform

Who Lost Chicago? by Bill George Stotis of the MRC

Religious Pluralism, Fundamentalism and Contested Identities in North American Orthodox Religious Life: The Case of the Greek Orthodox Church in North America by Professor Frances Kostarelos

Video of the above presentation

News Report by NBC affiliate in Arizona on spiritual abuse in Ephraimite monastery there, parts one and two

But what I really wanted all along was to be a Universalist!  I didn’t want to escape the spiritual abuse of fundamentalist/Evangelical churches, only to enter another spiritually abusive church!  I didn’t want to escape the lie that Christian=Republican, only to find it again in a new church!  I feel bait and switched.  I thought these things were not present in Greek Orthodoxy in America.

Update 4/9/23: More research is turning up another side to GOARCH, Greeks who say that the Ephraimite influence is being dealt with (though my own eyes and Bill Stotis say otherwise), and a huge backlash against our Archbishop Elpidophoros, because the fundies of other jurisdictions say he’s bringing “woke” ideas into the Church.  Online and in PEW survey reports I find plenty of Greeks who want to see a more progressive church.  I read the interview with Elp. here and find many reasons to hope.  Some people online think he’s meant to be the next Ecumenical Patriarch.  Meanwhile, our Metropolitan is trying to get the churches to be more inclusive of women/girls.  Is it possible–Is there still reason to stay where I am?  Do people spread rumors about Elp. and our Metropolitan because they’re upset about these things, and not because they’re true?  Should I stay and work for change instead of switching to a liberal church with theology derived from the Reformation and bland services?  Do I really have to leave Orthodoxy when people like David Bentley Hart and Archbishop Puhalo are still in it?  I’ll have to see what happens–Will the fundies drum out Elp. and people like me?  Or will we be able to work for change at last?

ASD / NVLD diagnoses, bad friends, and political PTSD

Some people insist that people can’t “label” themselves without a diagnosis–whether it’s NVLD or Asperger’s or whatever else is out there.  But here are a few things to consider:

1) Getting or not getting a diagnosis doesn’t make your issues disappear or appear.  If you have NVLD or Asperger’s, you still have it whether or not you’re officially diagnosed with it.  And you know your brain better than anybody else does.

2) We have a well-known autism center right here in town and connected to the hospital.  The founder used to help NVLD students as well as autistic ones.  But the cost of diagnosis is $4,500–if you’re a child.  If you’re an adult, they won’t even evaluate you.

3) This article by Devon Price points out various problems people can encounter before and after getting a diagnosis: Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That/ Know the costs — and the legal risks.

For example:

Very few insurance plans cover Autism assessments for adults at all, so most diagnosis-seekers will have to pay out of pocket.

…To this day, many Autism assessors won’t even see adults at all. Even those who do frequently rely on evaluation instruments that were developed for children.

…I hear from women who have been turned away from an Autism evaluation because “women aren’t Autistic” on a shockingly frequent basis. It’s not unusual for potentially Autistic people to be rejected from diagnosis for things like being “too polite,” wearing makeup, or having any friends.

…There is no therapeutic “treatment” for Autism, no way for Autistic traits to be reduced or “cured,” and most in our community consider the idea of curing Autism to be deeply dangerous anyway.

…What we really need, then, is the acceptance and support necessary to live more freely as ourselves (which has been demonstrated to carry many psychological benefits).

[Note: I have said the same thing regarding various traits, such as NVLD, selective mutism, and introversion.  Even before I knew anything about these traits, I resented being told that I had to change, rather than other people accepting me for the way I am.  ABA is related to gay conversion therapy and should be viewed the same–along with attempts to punish/”change” the NVLDer or introvert.]

…An Autism Diagnosis Can Impede Your Gender Transition

…In many countries, it is impossible to immigrate and become a citizen if you are Autistic — or if you have an Autistic child.

…Diagnosed Autistics Can Lose Their Legal Autonomy

…An ableist person who does not respect you will not suddenly begin respecting you the moment a psychiatrist says you have a ‘disorder.’ If anything, a person who once doubted the existence of your disability will simply turn around and use your diagnosis to discredit your judgement once you have it.

…A diagnosis is not what makes a person Autistic. Autistics existed long before psychiatry decided there was something ‘wrong’ with us, and we will remain long after it ceases to do so. You get to decide for yourself if the label “Autistic” is useful to you, if it helps you understand yourself better, communicate who you are to others, and advocate for your specific boundaries and needs. Nearly all Autistic community spaces vocally support self-diagnosis, and consider inquiring into a person’s diagnosis status to be pointless and impolite.

…And various other things which are far too numerous too name.  Note that at the end, the author does also list reasons TO get diagnosed, so he’s not just a Negative Nelly.

I know very well what it’s like to know you have something going on in your head–to have it reinforced repeatedly throughout your life through, say, traffic accidents, difficulty making proper judgment calls, people ghosting or mocking you, bullying, teachers complaining about your handwriting or your trouble understanding directions, getting lost, on and on.  Yet you tell people you have a disorder, and they don’t believe you.

I see the traits and read message boards for people with NVLD and Asperger’s, and identify with a huge number of them.  It explains everything I’ve ever gone through.  On August 26, 2010, I took the autism spectrum quotient test and scored 33–which means “clinically significant levels of autistic traits.”

I envy young people with these disorders because they’re more likely to have been diagnosed early and have somebody helping them, so while they still struggle with many things, they seem to be doing much better than I ever did.  When I was a kid and young adult, people just dismissed it all as a character flaw and yelled at you, putting you out in the world and expecting you to just figure things out.  If you didn’t, you were called babyish or told to try harder.  Now kids get IEPs and help dealing with social situations.  They get a diagnosis early that tells them it’s not just them being weird, that there are others like them and it’s okay.

At the same time, it’s troubling to think of all the things people have bullied/criticized/abused me for doing, which research has proven all trace back to NVLD/Asperger’s.  I want to go back in time and bop them on the head for being ableist and abusing somebody with autism.  People reject or scold or mock or abuse me over and over again for traits I didn’t ask for and have no control over.  Or they deny I have NVLD or Asperger’s, while complaining about the very traits that prove I have them!

I now know that my stint in counseling in college would’ve gone much better if either I or my counselor had known anything about learning disabilities.  I was looking for an explanation of why people kept mistreating me yet I didn’t know how to stop it; she kept going on about things like meeting people and conquering shyness.  It didn’t feel helpful at all, and then I ran out of free sessions.

It wasn’t helpful because my splenium is likely small, hindering communication between the left and right parts of the brain.  If somebody can fix that, my issues will probably melt away!  Maybe I would have an accurate view of where the traffic is.  Maybe I would no longer have weird visual illusions that distort the angle of the road and make me almost run into someone.  Maybe I would know what to do in a split-second crisis, or stop getting lost inside a building.  Maybe I would read people properly and know when and how to enter a conversation.  Maybe I would know if someone is manipulating me.  Conquering shyness does nothing to help that.

So I know what this is like, along with what it’s like to have people dismiss what you know very well is true, simply because some professional has not diagnosed you.  But these disorders existed long before diagnoses ever did.  And as I have discovered, getting that diagnosis is a lot harder for adults.  NVLD still isn’t in the DSM–though it used to be, and there are talks of putting it back in with a changed label to make it more accurate.  (Nonverbal doesn’t mean we can’t speak!)  And both that and autism can be prohibitively expensive to diagnose.  There is no medication for NVLD and research, I’m told, has stalled.  Treatments can be expensive as well, and since it isn’t in the DSM, it’s not covered by the Individuals with Disabilities Education Act.

I’m currently going through depression from a combination of 1) PTSD after many years of divisive politics, leading to increasing withdrawal from social situations; and 2) finding out I’ve been blocked online by somebody I considered a friend.  This is not the first time I’ve been ghosted by someone without a disagreement, an argument, an explanation, or even a word.  I have no idea they even have a problem with me, and suddenly they’re gone.  And this person–the story I got through a third party turned out not to be true.  I only ghost people who are bullies or bigots, I’m not a bully, and do my best not to be a bigot.  So being ghosted by someone I never argue with–I don’t understand it at all.  One person I knew in real life ghosted me several times, the last time a few years ago.  I still have no idea why she ghosted me any of those times.

As for the online friend, the initial ghosting and blocking was a while ago.  I had sent an apology through that third party, since she had blocked me.  Then I found out the story I got wasn’t true, so I don’t even know why she blocked me the first time, or why she unblocked me but then blocked me again after I sent a friend request.  We had never argued or disagreed about anything!  I had stuck up for her and helped her!  I found out about the second block this past week, since it had been such a long time since I sent the request.  This drove me into a deep funk, where everything that ever went wrong for me socially began replaying in my mind.

Many years ago, I stopped going to SCA events because it felt like every time, somebody would start badmouthing my faith, when they weren’t telling me to talk more or to smile.  Nowadays, it seems like every time I go to a social event, including church, somebody starts ranting about trans kids, or liberals, or CRT, or people taking sensible COVID precautions, or being called racist (when they’ve just been spouting racist crap).  I wonder if this is what it was like for Southerners against slavery in the 1850s, Southerners against Jim Crow in the 1950s, friends of Jews in Nazi Germany….Did they find most people around them to be intolerable?  Did they feel like fake allies if they didn’t leave their support systems?  Were they afraid to speak out?  Did they leave their churches or best friends or families?

This is not the church I signed up for.  This is not what the social events used to be like.  It hurts to go to these places–trauma and PTSD–so I’ve started withdrawing because of it, just as I did with the SCA.  Withdrawing is also because it feels like I shouldn’t associate with people who do this.  But what about the people in your immediate family?  I’ve had to unfriend people on Facebook who I still see in real life at group events; that one’s especially tough.  You hope they don’t mention it.  And–just like post-SCA–it’s made me feel lonely and depressed.

When you have issues making friends, and these are your family/support system, you feel like you either have to stay with them or be alone.

Meanwhile you may lose sight of the good friends you still have who have stuck with you and are not fanatics, along with new friends who are kindred spirits.  You may forget that, for example, one of the people in that group which your husband separated from–thereby shrinking your own circle–was a child abuser who popped her kid’s mouth for using her own bad words and laughed about pulling his ears.  Or that friend who ghosted you without ever explaining why, if that’s how they treat you, then maybe you’re better off.

So I thought, “I’ve gotta go to the local autism center for help”–only to find out they won’t evaluate me because I’m 49 years old.  Their online resources are geared toward kids.

So I turned to the Net and found one place in Mequon which evaluates adults for both autism and NVLD–but according to my insurance company’s online tool, they appear to be out of network.  So I’d be stuck paying at least $2000 out of pocket.  Rough estimate given on the website for the Mequon center: $210/hour for 14 hours is almost $3,000.  Ow.  Really don’t need that charge on our credit card.  Found another place in Madison which evaluates adults and looks awesome (all the doctors are women)–but states right on their site that they’re not in network, so I’d be paying the entire cost myself.  The quote is $3,000-$3,500.  ARGH

Our insurer may pay for ABA (that torture treatment mentioned above) and other autism treatments, but won’t pay for neuropsych testing that’s not “medically necessary.”

So getting officially diagnosed may be completely out of reach for a lot of people.  We shouldn’t be bullied and disbelieved by ableists just because we can’t get a diagnosis.  We know our own brain better than anybody else does.

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