Life Lately: Late Summer 2019

                                                art by me, some elder goths may recognize who this is....

Life has been humming along lately.

I still go to the gym and can do 20 minutes of the arm bicycler now. I like doing this new rope pulling exercise. I do hope to do more leg exercises on one machine. There haven't been any weight loss miracles, I did get a bit smaller on top but I believe the gym did help my lungs. We also need to go more times a week, I try for two when not housebound. Sometimes I enjoy exercise now, that is something new. Balancing the energy is not easy, definitely I'm one of the slowest people in there. Some of us have to work with what we got. Young people should be introduced to exercise in a positive way so it can remain a good influence on their life. Maybe the effects are not magic, but if I am still going a year later and like it, that means something. I couldn't even do more then 4 minutes on the arm bicycler when I started.

I'm planning to do another art class, it will be more painting or conceptual art. I also did some art work for a zine recently with husband and worked on those projects. There's been more drawing in my sketchbook.  I plan to do more water colors.

They told me I am going more deaf. My Meniere's has been progressing. My hearing always has fluctuated to be worse, when I have been sick but it's been a slow downward progress. My word recognition went down by 50 percent within a few years.  This has not been easy to deal with. I lost so much hearing, they ordered another hearing test in 6 months. So some of my health stuff does remain scary.  My life still has a lot of medical stuff to be dealt with.

There's blood tests to be done for the UCTD, I had a tooth die I had to get taken out. The thrush comes to knock on the door still and the chronic fatigue is not easy. The pain can stink. I am in bed now. Well a person can only do what they can. The going deaf stuff scares me, a cochlear implant is not possible due to other health stuff but I am researching what are the options for more powerful hearing aids. Sometimes it's frustrating because hearing issues can make life so isolating. One does not want to lose music and other things.

I am trying to live life, and went to a large stamp club yesterday for the first time with a friend, that was fun. It was stamp collector's heaven as they auctioned off stamp albums, bags of stamps and post cards. I limited my spending so there would be food money later in the week, but it was a fun time.

A couple of years ago, I did get involved in the "ex-evangelical" movement, probably around the time of my deconversion. I was able to help a lot of people who were facing the same things I was with coming out of conservative and fundamentalist churches. I made some interesting online friends who were very supportive. One thing we do work on is warning others about the dangerous of extremist religion and the emotional outcomes of spiritual abuse and "high control" churches and religions.

I've been enjoying my UU church a lot. They are great people and wonderful to be around and they have been a very good influence on my life and way of being. The place changed my life so much for the better. When I was young I enjoyed my UU years in ways I had forgotten but many good memories came back too with the intellectual explorations and other sharing. At the present I've been working on projects with them too. I was happy to see neurodiversity advanced there, and to be able to share life with Aspergers and what that means. I think educating people on these things does bring more understanding. This is a place I have felt safe and happy at and that has changed my life in many positive ways.

"How the Alt-Right is Warping The US Imagination"

I read this book last week. It's a good book, but after you read it, you feel this uneasy scared feeling. I kept thinking about the insanity of what led up to World War II, and how humanity keeps making the same stupid and evil mistakes. The march of right wing jerks from Boris Johnson in the UK, to "Mr. Burn Down the Amazon" Bolsonaro makes me wonder if Trump is installing puppets world-wide. Whose voting for these people? Are there that many rich sociopathic people out there?

I see 2020 as make it or break it time. We either get Bernie or Warren, I prefer Bernie and march on to something known as progress and facing global warming and other planetary issues head on or we get Trump and more fascism and hell. One can tell the right wing is impacting the globe in very insidious ways where instead of humanity working together to solve problems, the lines are being drawn, and the same eugenic bullshit that took over the world in the 1920s and 1930s is being resold and repackaged.  This time we aren't just gambling with World War but environmental devastation.

I'm hoping the reasonable people will win, and people are waking up from the extreme racism, cruelty--such as kids in camps and we will see a brighter future. This book exposes a lot of the problem though, the growing alt-right movement has brought a lot of pain and insanity to our country. The uber-racists have come out of the closet and feel safe to do their evils with no censure.

This is the best article I have ever seen on the alt right, which I posted here some years ago. "The Skeleton Key to the Alt Right" sums up what the movement was all about.  During my years in fundamentalism, I was exposed to a lot of the alt right. While I refused the racism and some of the worse of it, just being in those churches I was swimming in the alt-right pools. They focused on an idyllic past that never existed. and taught that women should obey and that "father [god and man] knows best".  The subjugation of women also remains one of their central platforms along with the rejection of everyone who is not middle class plus and white.

Reading this book scared me though, the parallels with Nazi Germany could not be ignored. People forget Nazism was a YOUNG movement at it's start and got the people to march for fascism and the "motherland" and did so via the Hitler Youth and indoctrinating them too into "god" and "country". "God and Country" are two central themes the United States alt-right which is religion fueled. People who would have been written off as crazy racist extremists just 20 years ago have gotten a platform in America.

Don't forget economic problems fueled the Nazis in Germany and are fueling the alt-right here though oddly the poor conservatives vote for more of their own demise, as they are trained to worship the ultra rich, as being their "betters". The same formula of reaching out to economic disenfranchised people by telling them to blame the "undesirables" has been done before.  The same eugenic themes are touted, I have noticed, with the same extreme racism in both movements, though the USA flavored Alt-right focuses on African Americans and Hispanic people negatively rather then Jews in Germany. This is one reason that America is now locking up little Hispanic kids in cages and nothing is being done about it.  Hitler focused on ousted all the "degenerates" and used terms like that for people of other races and religions and oppressed gay people too.

It's is obvious that the alt-right has scapegoated other races in America and promised it's white dupes a 1950s [well a 1950s Utopia that never was] to sell their oppression. Where every family could live like "Leave it to Beaver" with a housewife in heels and pearls and a father with a good job wearing his suit everyday, giving out his daily doses of morality and wisdom with an obedient wife and children. The anti-intellectualism and hatred for science is also a problem, but this is also a foundational point for religious driven right wing movements that have taken over before. They always kick out the "intellectuals" and silence any dissenters.

If this movement keeps growing and Trump gets another 4 years, we are going to see more trouble and hell unleashed in this country. I have noticed the "might makes right" misogynic clan, are very alike on their lack of empathy or care for other human beings. It's scary. In 2017, Charlottesville was the warning shot but it seems things just get worse and worse. I live in a conservative enough area to see the Proud Boy flags and insignia and MAGA bumper stickers on cars. Those are people I know to stay away from.

One thing too, we are not in the days where one can "compromise" in the mistaken belief that these brands of Republican and/or libertarian extremists are harmless people, they preach oppression against multiple groups from other races to immigrants, gay and disabled people. They are a danger to us all. Sadly history repeats itself all too readily.

In my old small town, due to it's rural place and religiosity, the place was alt-right headquarters where bibles ruled and homeschooling prevailed. They bought into more and more of the teachings of the alt-right, even people who once renounced racism as disgusting, now posted Confederate flags on their Facebook walls. I want to cry even remembering the alt-right sermons I heard in my then fundie and evangelical churches which to be frank are dominionist homes to the alt right gospel. They preached that pluralism was "bad", that "multiculturalism is bad"--the "West is best" sums that up which is now a logo saying for the Proud Boys. Peaceful society is in danger from this movement.

Were You Your Family's Scapegoat?

Good video introducing people to the basics.

Losing Friends to Stage 4 Lipedema

I've lost two online friends in the last couple of years I met in the Lipedema world online. One died a few weeks ago. Both were very active in the Lipedema world, getting the news out, doing videos, reports, and being a support to women with Lipedema. Their health caused them extreme difficulties. Both died of Lipedema related conditions and were very young, with one who was only in her mid-30s and another in their mid 50s. Many don't take the dangers seriously of stage IV Lipedema. These two friends moved heaven and earth to take care of themselves, that is one thing that stood out about them. They were wonderful advocates for OTHERS but also advocates for THEMSELVES.

One even traveled to another country to get special liposuction surgeries. Another found specialists some years later in the USA. They did their compression, sought treated and exercised but Lipedema stage IV/Lipo-lymphedema marched on. Many see this Lipedema as something weight loss would cure. If only they would 'go on a diet" and there's even people within the Lipedema community that ignore the fact that in the higher stages, years of untreated Lipedema isn't going to go away. Lose what you can, but many people in higher stages are judged over their weight. In my case I did continue, with the gym and while I wish I was able to get over there more days of the week, the spoons with chronic fatigue are limited. I lost a little weight, but it was nominal. I don't know where my weight is now but don't think I have gained, I can tell by my walking. I did shrink some on top, but that's happened before. Both these friends put in every effort they could to stay to protect their health, but were supersized like me.

I feel very sad about it all and have cried over both. They both fought so hard. Sometimes this world is too difficult, and I get strange thoughts about why were us humans put on this earth, to suffer so much like it's an experiment of a mad man. This is one condition where the suffering is too much. These were two folks who showed bravery and grit in the face of unrelenting health challenges. They were an example to many people. Their activism work helped so many of us.

I almost died of Lipedema in my 20s and 30s, I didn't know it was Lipedema causing all those horrific leg infections. One friend was lost to sepsis. Sepsis is the danger for all people with Lipedema in higher stages.

You get cellulitis and then it transitions into blood poisoning. In 2001, I almost died, this was the crisis that led to my later religiosity and other dubious decisions in life but I had sepsis several times before in the 1990s. These were two-three week hospital stays. My life now is impacted by all this where staying alive means laying down for hours a day and assessing how one leg is close to an infection or not. Doctors don't realize my excellent compliance to wrapping, compression and my leg press is ruled by fear and also wanting to be free from pain.

These friends did everything they could too. This is a merciless disease. Sadly it's impacts are diminished via prejudice, and some sexism, just seen as a "fat woman's disease" that "diets will cure" but people are losing their lives to it. My two friends did.

Truth comes First

My religions told me to be good, well both religions I departed from, the family Catholic church and later the evangelical church. I was told the falsehood that "being good" would make life successful when all it did was make me a doormat. Many people fall into this trap. Yes truth is more important to me now, then the "goodness" defined by this world. There's a point where a woman grows up beyond "Be a good girl" and starts getting invested into truth and realizing the myths and lies she was taught on multiple levels.

Neurodiversity

 

This is a speech I did on neurodiversity at my UU church, so it's written a little bit different. The more people can be educated about Aspergers, the better off we all will be. I did make the decision to come out as an Aspie but had already been doing that in my community in certain safe places for years like my disability group and past self help group. I am also out of the Aspie closet on Facebook.

The world of high functioning autism or what used to be known as Aspergers before the DMS changed the diagnosis to just being on the autistic spectrum is a very different place to be. The world has it's popular and stereotypical views of the Aspie or higher functioning person with autism. People know about famous Aspies like Dan Ackroyd and Tim Burton. They see Sheldon on The Big Bang Theory, or Young Sheldon on his own spin-off show, and read about Lisbeth Salander in the book, "The Girl with the Dragon Tattoo"

When I was in my early 30s I found out I was on the spectrum, like many women with Aspergers who suffered for years with misdiagnosis, it was later figured out girls present Aspergers in a different way then boys. For me finding out about being on the spectrum, it was a place of answers and of understanding my differences.

I will be focusing on the world of those who are on the higher functioning end of the autistic spectrum. I know this is a whole other ballgame then severe autism. I used to substitute teach in special ed classrooms with autistic children who were totally non-verbal. Aspergers is by far a a more mild version on the spectrum where one is verbal but has problems with social cues, and communication. For many Aspies, while we have challenges, we also know it can bring gifts, Aspergers is basically having a different brain operating system.

The world has the popular view of the Aspie or higher functioning autistic, Some imagine Aspies in a certain way but don't understand the whole picture. One challenge for advancing neurodiversity is reaching across this gap.

I asked my fellow friends and acquaintances with Aspergers and those on the autistic spectrum for this reading: "In the interest of neurodiversity, what would you like those who are neurotypical to know about you for understanding and acceptance?" These answers will also reflect bits from conversations I've had over the years as well with Aspie friends and other sources:

1. First and foremost, neurodiversity doesn't "look" or "act" a certain way. Many people with autism and other neurological differences can "pass" as neurotypical. There are many successful people on the higher functioning end of autism and this includes college professors, teachers, writers, actors, artists and other professions.

2. Many Aspies have talents, and these include having deep hyper focus, observation skills, attention to detail and visual skills such as what Temple Grandin detailed in her movie and book. "Thinking in Pictures". 

3. It is a lie that people with autism have no empathy. We have a harder time showing it and often it will show it differently, but often people on the spectrum can even have higher levels of empathy
We just have a harder time showing it in ways that neurotypicals can understand but the feelings are there. We are not robots. We suffer from the stereotype that all Aspie people are like Spock with no emotions and only following logic but remember even Spock was a very loyal friend to Captain Kirk.
Many of us may seem insensitive because we do not respond to difficult situations the same way neurotypicals do. In fact, many of us are extremely sensitive and sometimes in a state of shock, unable to react at all.

4. Please do not tell us if we are higher functioning and able to be employed or talk to people that we are not on the spectrum or that "we do not look autistic" or make jokes about “Ass-bergers” or using this condition as an excuse. Please listen and do not say things like "I have that too" or "I get like that too". These statements can be invalidating. When I feel like people won't understand or believe me, I shut down.

4. We have sensory issues, which are intense. Loud sounds, bright lights, annoying smells, feel painful to us. They may not bother you at all but for us they can be a problem. Some of us have auditory and visual processing disorders that affect our senses as well. Be sensitive to sensory needs we may have.

Increased anxiety and PTSD tend to be more common in the neurodiverse and require the same level of understanding as anyone else with these conditions.

5. Neurotypicals often communicate via subtext and inferences. [They often don't mean what they say] There's no subtext in my words. To survive in the world I am conditioned to search for subtext incessantly. It makes me paranoid at times. I super-dig talking to autistics because I can rest a little.

6. We have Spiky skills profiles: it's very important to recognize the strengths of autistic and other neurodivergent people, but at least as important to recognize the difficulties. Some of us can do math problems in our head or wonderful art projects but then find it hard to get the housework done or our stuff organized. Please respect our gifts and don't deny our opportunities to share them. Autism is {depending on the individual and their circumstances} a disability, and that's okay, we do need adjustments, as well as acceptance, if we are going to thrive.  

7. We can get very pedantic about a subject we like. We can bore neurotypicals going into great detail about areas of interests. Most people on the higher end of the spectrum, have very passionate interests that bring a lot of joy to our lives. Some can turn those into their livelihoods but this talking too deeply about one topic can upset and bore some neurotypical people sometimes. Being analytical for us is a natural state of being.

8. Eye contact can be hard, please don’t force us to look at you

9. Being what is considered unusual/ quirky/atypical often negatively affects mental health. People don't understand us and can judge us rather harshly and this takes a toll.

10. It can sometimes really help to consciously explain to us some things that others just seem to "get."

11. Realize therapies and cures to suppress autistics characteristics can be harmful. We don't need cured or for others to be aware of us. What we need is for people to seek to understand us and why we do what we do. People who focus on cures and making autistic people conform, forget that our differences have brought much innovation, creativity and scientific and other discoveries to the world.

12. Aspies want relationships and friends same as everyone else. Some of us may be more comfortable with one on one interactions or texting rather then using the telephone.

13. I conform as much as I have to, to get by in the world, but I also live in my own quirky non-conforming world. If I am weird around you, it's because I am comfortable.

13. Not all Aspies are good at math, science and computers, some are of course but not all of us.

14. Having autism is like having too many tabs open on a computer.

I hope this list can help in understanding people on the higher functioning side of autism and to bring more understanding and acceptance in the interest in neurodiversity.