Wednesday, July 22, 2020

I See You In a Different Light

Because of my openness, I have found myself in a lot of situations that end up being rather “literature-worthy.” That is because I apparently put people at ease, some friends tell me. So, people volunteer a lot of personal information. Funny because my partner had a fascination with Deanna Troy on Star Trek The Next Generation, and I have one with the companion Inara from Firefly, who were both confidantes. This has had a profound effect on how I see people. A lot of people are lonely or in pain, but the strongest people I know have a passion of some sort. When I say strongest, I mean they are the people most likely to continue to live a life of freedom without threatening the freedom of others in some way. They are usually creators of some sort, even if it is just to jot down a daily haiku. Oh, not to marginalize this noble endeavor; it is an art to use so little to say so much.

To know so much.

Because of what is going on in the world, I can’t stop thinking about the people I have known. Everyone was struggling before this started, even me.

I posit that the reason is because we have all been ridden hard and put away wet. Sorry for the language, I am the son of a son of a sailor. On both sides. My grandfather apparently went AWOL in the Philippines in the 30’s. He was in the merchant marine and a clever man. He had taken an alias sometime in his teens; his mother had disappeared and his father had cast him out. Nobody knew what happened to her; she was of German heritage, born to immigrants from Slupsk, Poland, and it was not a good time to be German. I did find her at the Bellvue Hospital Nurses’ School, I think, when he was registered with the U.S. Merchant Marine in 1930. When I saw my uncle for the first time in a quarter century a few years ago, he informed me about the alias and that led to the breakthrough in finding my grandfather in New York City listed under it. Apparently he was still using the alias when my uncle was young, but my grandmother told him he needed to pick a name and stick with it, so he used his birth surname, which of course is my maiden name. The reason he chose the alias, according to my uncle, was because the social services system had put him into abusive foster homes in the 20’s, during the era of the orphan train. Indeed, I found letters from her and the New York City orphanage she was living in to a relative in the western US asking if this relative (a US Statesman of Irish descent, living as a Scot to avoid persecution) could possibly send money for a coat, or allow my then 14-year old great aunt to come live with him. The relative had replied that while on the outside he may have looked wealthy, he no longer had money to pay the taxes on his land, and was losing it all. That is just one story of the way my kids’ ancestors experienced The Great Depression. My grandmother was not even 16 when they married, and she lied about her age. To make a living, my grandfather did lots of different jobs - whatever was needed. While originally the alias was to escape social services, he had begun regular employment and was listed with labor unions under his alias, and so to not lose his credits for his apprenticeships, he needed to keep the alias. There was something funny about getting favors from a secretary, though. It sounds, from what my father told me, that his father was always working. He died fairly young, at 54 years of age after developing sepsis from surgery. His children were just barely grown when it happened.

So, I have this genealogy hobby, and it can be a little expensive if you want to do a good job of it. To piece together that puzzle, I had to visit the Nebraska State Archives, which was an extra two days tacked onto a trip my son, father and I were making to Omaha, anyway. I once worked as a Title Clerk in a Title Company, and got to geek out on Vital Records every day and get paid for it. So to piece together some of my own personal ancestry in that way was a real gift, and the memories we made on that trip (during the Triton snowstorm in 2013) were unforgettable. I mean, sure, it was bittersweet to see how our family suffered during that time, but to see personal writings that confirmed the relationship to this statesman which had only been rumored before felt strange, too. It was a crapshoot; my great-grandfather’s second wife told me about the “famous uncle” in 1990 through written correspondence, and my father and I were always curious about it, only because there was quite a bit of correspondence held at the archive from this person, due to their influence.

I have a strange relationship with the pastime, because I got into it to learn more about what forces my ancestors experienced that ended up shaping me. A lot of people I meet who have some casual interest in it get really excited about finding a relationship to Charlemagne, and I kind of figure that far back would be an extremely long book to describe how that relationship actually influenced a person. People get really excited about cousin relationships to famous people, but I don’t really see people being transparent about the ways that economics over the last 150 years or so impacted their family. It’s like if people’s ancestors had to overcome some sort of economic or health hardship, they want to hide it, because those kinds of hardships were greatly stigmatized, and still are. People see these things as being at odds with success, because nobody really understands what success is.

In my other writing, I described the numerous names my maternal grandmother used during the post-War era after her short-lived stint as a secretary in the Richmond shipyards before becoming pregnant with my mother in her teens. It’s kind of interesting to think about this on the level of perhaps having wondered “what kind of people” have aliases and why, and that it might be because of hardships. I actually found much sadder stories doing research for other people, and it is not difficult to see how the people were affected by these stories on some level, although I sense a general reticence about thinking too hard about it. That kind of growth takes a lot of time and energy, both of which are in short supply for most people.

Anyway, the general point in bringing up genealogy is that I learned that big events in history absolutely had an effect on my family and who I became. Also, looking generally at the U.S. population, we have come a long way in our awareness about what freedom is.

I suppose this is all to say, that I have been perplexed by the behavior of Americans with respect to how they choose to spend their time and attention. Perhaps it goes back to much of the immigration here to escape the forces of oppression, but because thinking larger than the sources of our previous oppression requires time and energy, we only advance so far each generation. But we do advance. It only takes looking at one’s family history back to the Depression to see that.

The tragedies that beset my family actually originated during the tuberculosis epidemic and were a direct outgrowth of society’s failure to perform as a community. I am wondering why anyone “fails” when our communities have the resources they do, and the conclusion that I came to is that we are living outside our means, which makes it harder to help each other, because we perceive that we need more, which robs us of time and energy.

I have been conversing with a gentleman friend regarding writing, art, inspiration, and motivation. For a long time I had trouble getting motivated to make art in my studio alone. I don’t have any trouble writing alone; the barrier to writing is just making the time alone a priority. I conquered the battle with art, for the most part. I am just going through a period where I am having to reimagine some of the ideas I have a burning passion to complete in media that do not pose a  health risk to myself or others, but in a way that still conveys the original spirit of what I perceived. There were many things I imagined 3D printing, but we really need to install ventilation in the garage to do that safely. The fumes do indeed permeate the bedroom space and the rest of the house. I had read that keeping chemicals in an attached garage is the largest source of chemical exposure for most people, but it wasn’t until I got a cheap portable VOC meter that I actually got to *see* the difference. So, long story long as I like to say, as things started heating up this summer I had to do an emergency “evict all chemicals from the garage” day because we have all become sensitive from being isolated indoors with chemicals for so long. I am not preventing other people from printing, but my efforts to try to get fresh air into the garage in an old skool way were not always appreciated. Not everyone was affected by the plumes as intensely as I was. Anywho, that was a left turn! Or as my mom likes to say, "There goes a bird!"

And that is why I need to be mostly alone while I work. I am easily distractible. I was trying to explain that to this friend, who like all of my single friends is pretty isolated. He said he just can’t seem to get motivated to paint unless he is around other people, and wondered if maybe he came to paint at my studio, he would be motivated. It is clear that we see things differently. I once also needed to be around other people to make my art. But for myriad reasons, I learned that I need to make it on my own without a lot of distraction. My stream of consciousness is very important in my work, and because it is traveling at light speed most of the time, it’s kind of hard to get the canoe in and out of the water so frequently. I already have a lot of distractions from personal health needs - things I may need to take care of without most company around. I think if I were ever to share studio space with someone, they would need really strong self-esteem because I tend to be really independent, strong-willed, and sometimes easily frustrated by people needing my already not great listening skills when I am in lower consciousness states. Staying in higher levels of consciousness requires a lot of time and effort on my part, and I like to use that time to create things that can encapsulate the messages I want to share in the most efficient way, which is more difficult if I am trying to listen to someone else. I suppose I am not opposed to all smalltalk, it’s just that what I’ll tolerate is pretty specific and uncommon. I suppose that’s to be expected or maybe comes with the territory of being an artist. But suffice it to say, I can be an unpleasant person if my canoe trip gets interrupted.

I get to spend more time in the canoe than a lot of people. And that, to me, is freedom.

Wanting to create during the pandemic is a no-brainer for me. There is inspiration everywhere on the personal level. The pandemic has created a lot of material complications that are both an impediment and an inspiration for creation, specifically around the realm of emotional labor. From the standpoint of a caregiver, it is a very BDSM thing. I have guilt for the time I need to create, and guilt for not creating, and not taking care of myself and others while I am creating. It can take a long time each day to wind out of the guilt to a place where I can create. Luckily, I learned the art of stoicism as a child, so my outward face can be calm, even when I am falling apart on the inside. When I was 7 my father nearly died of an infection. When it happened, my mother told me she didn’t know what she would do. I was privy to a lot of my mother’s secrets, and I think this is important because her open humility let me know that she never saw herself greater than me. There was of course plenty of authoritarian undercurrent in my upbringing, more so than some of my friends, and less than others. What I got to see from my mother sharing her experience with me (I was sort of her therapist as a child) was the soul inside the monster. I’m not saying that my mother was a monster, but she certainly had some old fashioned views of society because of being raised by a man who was born in 1899, the grandson of a prominent politician, who was disowned for adopting a bastard. There’s a story in there for sure. Gotta love how easy it is to manipulate politicians and businessmen through family shame.

For some reason, I get offered a lot of sex. It is kind of destabilizing to me. It is difficult to navigate consent as a mother. It caused me to have to do deep meditation on my personal sex drive and how it relates to my life satisfaction, to know what my own personal needs are. As I have stated before, sexual satisfaction is an important part of my health regimen. And as an aging person, entering the years of perimenopause, libido can be a challenge. I think this is because of metabolism, and so I have, for years, been tailoring a diet which maximizes my libido. It is pro-metabolic and has had some miraculous consequences for my health, despite all the challenges we have had from the environment.

Thank goodness for vasectomies and slightly bigger houses and writer friends who remind me of all the sex I had to turn down over the past few years. I was thinking about why I turned it down in each case, and it wasn’t due to lack of sexual attraction (although this was the reason I gave), it was because I do not want to decouple love and sex. There are some strange reasons I feel this way, mostly owing to the nebulous territory that is friendships, sexual favors and feelings. I learned that it is an insult to assume a single man would be satisfied with a “friends with benefits” relationship (I’m sorry), and how difficult it is for bisexual and transgendered people to navigate the long-term relationship world. There was no road map where I was, and all the while I kept wondering how I would feel to be my children in these situations. The situations caused me tremendous angst because I was worried about hurting people, but the truth is, a healthy sexual relationship outside of my life as a mother might be a beneficial thing for me, and the best way I could be an example of a sexually liberated person for my kids. I did have multiple people suggest this to me, including my therapist. I didn’t really know how to talk to my family about that stuff, though. It was probably unheard of when they were my age for a therapist to suggest an alternative marriage arrangement.

Sort of by accident, my husband and a good friend of mine became very close, and I had said that I was okay with them going as far as they wanted, but they didn’t get very far. They really enjoyed each other’s company and she helped him understand a lot of things from a menstruating married woman’s perspective that I was unable to over the years. They didn’t have the little frustrating things between them that we did. Ultimately, though, the time element was a tremendous problem because we had poor communication around scheduling and I often ended up being abandoned with an empty fridge after a long energetic push with the kids, bills, or some other thing I didn’t have a choice about. This is around the time I got sick from all the VOC and formaldehyde stuff and had to push everyone in my life away to be able to handle all the things I had gotten behind on.

I have had to engage the services of repair people for my air conditioning and my washing machine over the course of the pandemic, and in both instances I went to lengthy efforts to discuss the way my home would be entered and exactly what the problems were before they came. In both instances, the service person who arrived was not wearing a mask correctly, and in the words of The Lobster, “His entire snout was showing!” This guy had his paws all over his face, and violated my personal space repeatedly. Our roof needs repair, but because of previous experiences with workers in my home, I am wary of having work done on my property at all. I am a small business owner, so I understand the need to work during the pandemic, but the right to work does not equal the right to expose people to a deadly disease. I have not decided how to best channel the energy about that situation other than to write about it. Should I contact the business owners? I feel like business owners should have to provide appropriate personal protective equipment for their employees. This is a no brainer.

When my great-grandparents died of tuberculosis, it was incredibly difficult to get work, especially if one was sick. There was no social system to catch them. The stigma made absolute sense, but the failure of society to support workers who could not work was inexcusable.

I feel like this is an important discussion to have right now due to Mary Trump’s new memoir about the President. I have read the Prologue, and in it she states that Donald is the way he is because he “never knew hard work.” I don’t think she means that. That is ableist and meritocratic thinking. I just think he has the beginnings of dementia. He learned everything he knows from a man who had dementia for who knows how long, and whose song, line and dance was about work, because it wasn’t creative, because he had dementia. He doesn’t know any other way.

Over the course of my isolation I learned that for my best mental health, I need to experience something magical every day. It’s up to me to make this happen. I have to have a certain amount of time that is left for my mind to wander. I think that’s basically it. If I can’t get that, then I can meditate or have an orgasm, and that usually does the trick. The shorter I am on rest, the less effective those methods are. I think it probably helps on a number of levels, but the one I’m thinking of is how meditation increases theta waves in the brain, and also cleaning of cellular debris by glial cells. Through these processes I have near death experiences which kind of consolidate all the data I have taken in from the recent time stream, and then when I have a dream or near death experience, I get a message from the aggregated and simplified data regarding whatever I have studied. I am essentially using my subconscious mind like a supercomputer. This is an important learning process for me. I often get insight into situations I am dealing with in the process.

Taking the time to do this has had a profound effect on my psychological health. So it’s not difficult to see how having someone I’m not comfortable with on a very intimate level in my studio space would be an imposition. This may come from trauma during my childhood around my mother’s surveillance of my behavior. I haven’t had a lot of time alone in my life, so I have complicated feelings about what constitutes voyeurism vs. what is potentially helpful if shared with society. My methods are certainly unconventional, but they are healthy and sustainable. Our cultural knowledge comes from stories of real people, and I am, last I checked, a real person living a very different life, which if I felt confident sharing, could help others. I just don’t know what level of sharing is acceptable for my level of anxiety.

My art muse is much gentler and more about just doing. The doing itself is the reward, so I don't really need other people around to want to make art. I do, however, love me some good artistic dialogue about process, unique uses of materials, and sustainable methods of self-expression. I am not short on ideas, just time away from the BDSM muse.

Every day I spend some time gazing out my basement window. This time is religious for me. Right now there is a beautiful pastel gradient behind the cottonwood on the other side of the ditch; the greens are muted with lavender, or at least that is my instinct if I were mixing the colors with a knife. I have not painted it, but I do it in my mind. I notice new animals and plants, noises and sounds every day, from the very same window. I hear messages on the wind and see them around the earth and in the sky. In this time I can become aware of my own energy and my connection to the life source. It fills my cup. There are rabbits who live outside my window and I have seen them frolicking together, and dragonflies mating, and baby grasshoppers.

This is so different than my upbringing in the city; we have had several bears in our yard, elk, raccoon, bats, owls, foxes, and turkeys. It's really wonderful to remember that we are part of a living earth. It gives me peace in a constantly changing reality to be in tune with the cycles of the earth.

I know I don't owe anyone any explanations for my love history, but it occurred to me that some explanation might be helpful for others.

Saturday, July 11, 2020

A Life of Illusion: Prologue: We All Live in a Yellow Submarine

Is the road to hell paved with good intentions?

Sometimes I wonder if this isn’t the major lesson of my lifetime. I have tried so hard to be a good person, but who actually decides these things?

A lot of acts of goodness have unintended consequences, and right now, because of the situation our world is in, a lot of people are pretty certain they know what good is, and they’re willing to go to the grave defending what they think is right, whether it is or not.

Writing is one such territory; I never know who is actually reading my blog. I only see numbers. I know not how my words and ideas are taken. All I can do is speak the truth the way I see it.

I get frustrated by the mindless chaos I see in the world, like many people do. I think some people like to have me around when I’m in this frustrated state, because I can be quite entertaining, but I can go away from those experiences feeling miserable for what I let escape my mouth. Yes, it is kind of a personal hell in that regard. It’s why I don’t post here much anymore. Who am I to proclaim myself an authority on anything besides myself?

But I can say that I have had some experiences around infectious disease and the behavior of others that have given me unique insight on that critical line of whether our “good” words and deeds are healing, or destructive. It’s never entirely one or the other; that is the way of the Universe.

I will be honest and say that I was an early mask wearer. This is because I am a cystic fibrosis carrier. For most of my life, being just a carrier didn’t mean anything. My doctor doesn’t even take it seriously, as far as I can tell. But I met a pulmonologist from National Jewish at a barbecue once who says he sees carriers all the time - they just get less sick, and later in life. People with CF catch things fairly easily, and it’s generally recommended that they not be in proximity of each other because it is so easy to catch disease. And just this past winter, science finally decided that maybe Mendel made some mistakes, too, and that the holy child of recessive inheritance was actually just a wolf in sheep’s clothing. Cystic fibrosis is the most commonly inherited deadly disease. I didn’t even know I was a carrier until I did consumer genetic testing in 2012, and while I have plenty of the symptoms, the medical establishment doesn’t consider consumer genetics tests to be valid.

So imagine you’re a little family of four. And you have family nearby, and they consider themselves quite tight. Half of them aren’t carriers, and they don’t care enough to figure out what that means. They are extremely social, and not particularly honest about how they are feeling, ever, because they were raised to feel shame about being anything less than perfectly healthy.

Then you have the other side of your family, at least half of them carriers. Two of them are doctors, and all of them are die-hard churchgoers and volunteers.

Now imagine that you have been silently poisoned in your home, and you don’t know for how long. Imagine that you discovered this via becoming extremely unwell whenever you visit the “perfectly healthy” family because their professions revolve around real estate and interior design, their self-worth is directly tied to interior fashion trends, and they were always painting the walls, getting new floor coverings and furniture, and remodeling kitchens. One of them was even LEED certified, and yet they did not know how dangerous their behavior was, even for their “superior genetics.” Imagine you didn’t know how to say this to them, even though they had unexplained seizures, and even cancer, and you had even found research explaining the whole thing. But somehow, even with all that research, you just couldn’t find the words to explain this in a way that they could understand, without bumping up against their cultural values. They also value health; they just didn’t know how they were undermining it, with what seemed to have become an addiction.

Out of that addiction sprang many others in the family, to cope with the emotional and physical pain.. Mine used to be community.

That is my CF-carrying family’s addiction; service to the community. They always have something going on, and so I rarely get to see them. I actually share those values, but because of my illness, I have to be isolated.

Any change I wish to see has to start inside me.

My gateway into self-transformation was through contemplative yoga. I have a friend who calls it “sleepy yoga.” These classes are typically attended by older people who are dealing with chronic pain issues. It is a process by which one is able to achieve healing from pain through actions of the mind. Much of the worst part of pain is the belief that it will be interminable. This tenses the body, which increases the pain. By focusing on each part of the body and “reintegrating” the energy network within our own body - waking up all our sensory neurons to the reality of this exact moment - we can release natural endorphins. This is achieved through moving into an entirely different state of awareness, leaving all that does not have direct bearing on the present moment of reality in another realm. But don’t be fooled - this is not playing ignorant. Our brains are amazing things! While we are taking care of our immediate needs for pain relief consciously, things are free to then bubble up from the subconscious, revealing to us truths we may have been suppressing.

Pain can have a tremendous effect on mood, and vice versa. In order to get out of that kind of loop, when my mind machine just wants to keep playing the same story over and over, sometimes I desperately need to try something new - anything - to get a broom handle into the clockworks and get it to stop. This is what meditation can do.

Remember I said my family was addicted to service to the community. I suppose you could call some forms of service to the community, “love addiction.” I have a strange astrological secret. I was born on “The Day of Popularity.” My birth buddies are Bob Marley, Zsa Zsa Gabor, Ronald Reagan, and, my daughter’s favorite to bring up, Rick Astley. Yes, you just got Rick Rolled. It took actually reading that to see it. I always felt like an odd bird, because I am. But that feeling of being unloved or unappreciated was something that just wasn’t true. It was all a story my monkey mind made up. My monkey mind is a glass-half-empty kind of gal. Oh my God, if she would just shut up! She is always telling me ridiculous stuff, like so-and-so is going to make a mistake, or that there are things that I need to do to be “good,” or judging others for their attempts to be “good.”

When I was a social butterfly, this made for a kind of psychological hell. I became a little bit obsessed with health, because when I’m not, I can become sick easily. The state of the world is actually a big part of my wellness. I have a different view of wellness than most people, because of my professional background, and being a mother. A couple years ago, I thought I had healed myself, and so I got busier in the community again, and stopped paying attention to getting enough food and rest. This was all going on in the midst of some chemical exposures, which I did not figure out until I stopped going to the remodeling family’s house.

Right before Thanksgiving, I went back. I had not seen them in a long time, and I thought that they might be worried that I did not like them. I still rode in the same car with my family, so that nobody would think I was itching to get out of there for emotional reasons. I have wanted to leave for emotional reasons in the past. I think if one needs to get out of a place for emotional reasons, that is perfectly acceptable, and other mature human beings will let that occur without shaming the other person. I had driven separately before and that wasn’t a problem, but Erick was worried about how it would look. I had a gut feeling that I could not stay longer than 2 hours, and so made the agreement with him that if we rode together to their home, we would come home at that point. Here is the level of problem we had with people-pleasing. We went for lunch, which was served relatively promptly, but still took two hours. I often lose track of time when I am with others, especially if engaged in deep conversation. All of a sudden, I started getting a headache. I looked at my phone and saw that six hours had transpired, and asked Erick if we could please go. We gathered up our immediate family and left right away. When we got home, we both had headaches, and our thighs had terrible pins and needles. I ended up struggling with fatigue and shortness of breath for three weeks after that. He recovered more quickly. It was a physically painful holiday season for me. Luckily, I didn’t catch any respiratory or GI illnesses since I was largely isolated from others for… well… over a year. I have only spent quality time with one friend ONCE since before Thanksgiving last year. Once I finally got well enough after the next things that happened, the virus hit American shores.

What happened during that painful time after Thanksgiving was an incredible odyssey.

I am writing a novel about my journey. It was a painful one. I had to face a lot of devils lurking inside my own home that I encountered every day - volatile organic compounds (VOCs) and formaldehyde. They may be in many American homes, too, even if you think you are being careful, like I did. I am fairly well educated on these subjects, too. This information is just not well publicized in the United States. I don’t know why.

If you want to join me on the odyssey, you can read my upcoming novel, A Life of Illusion, which I will post in installments here on my blog. There will be ample coverage of how I deal with pain and being alone, in various contexts. It will cover caregiving, and self care. I am taking artistic license with the situations.


...Continued in A Life of Illusion: Chapter 1: An American Tune

Friday, July 3, 2020

Lies My Teacher Told Me

This is a piece I originally published on July 3, 2020, but took down, because with the political climate the way it was, I was afraid. Sometimes I do that. Sometimes it's not a good time to have something live on the internet. That being said, I am reposting it because I had a disconcerting interchange with a friend who was pissed off at me for disappearing for the last few years last week. I had tried to communicate to her what was going on here (and to other people), and she accused me of continually disappearing for a long time and then coming back and barraging her with research. That was my pattern with a lot of people, because I was struggling with the initial stages of dementia. When I did finally get to message with someone, I probably said too much because I was extremely isolated due to not being able to use the phone. Video calls were so hard, especially if there were multiple people on. I thought other people would be interested in what I discovered, but it doesn't seem that way. It seems like now that people are vaccinated, they are ready to return to their old lives and don't want to be troubled. I think the things I found are important, and I was trying to share them with people I cared about.
When I wrote the piece below, I was doing better, but I still had to endure more backdrafting from a gas water heater, COVID, and then reactions to the vaccines from November through the early part of June, which tested me in many more ways. It really was a game of trying to stay alive, and not being able to talk to anyone. I felt like every second mattered most of the day, and was terrified I was going to make a misstep that would land me in the hospital or worse. I learned that in the hospital, they can get you stable, but not necessarily okay. The medicine they put me on controlled my COVID-induced tachycardia, but then it also caused a bunch of other bad symptoms, both neurological and gastrointestinal. I am actually off all my meds (I was only on a diuretic and an angiotension receptor blocker before the beta blocker was added by the ER physician when I had COVID). I feel a lot better off these meds, but I have a rare disease (Jesus Christ, yes another) called Familial Hyperaldosteronism Type III which makes my blood potassium drop too low when on a diuretic. Interestingly, this could be linked to my aphasia, because there is a type of hearing loss caused by loss of potassium channels which causes an inability to discriminate between consonants when there is background noise, which is a good part of my problem. I have had this problem my WHOLE LIFE. This is a weird thing to discover, and it's left me wondering how many of my interactions with people I didn't understand, and how my life could have been different if I had known. I know I have misunderstood people. [EDIT 14 January 2022: I have healed my aphasia and memory issues despite what happened below and two breakthrough infections which set me back temporarily. I know exactly how I did it, and I can't get anyone outside my house to take me seriously, but I have witnesses].

I had speech-language therapy as a child for a nasal voice. None of the adults I knew said they could hear it, but my peers made fun of me regularly. I saw an ear nose and throat doctor who said nothing was wrong. Just before the pandemic, not only was I scheduled for a hearing test, but my dental technician had referred me to a palate-widening orthodontist who basically said it was amazing that I can even breathe. I really can't afford that kind of therapy. There have been a lot of things I have been offered that I simply can't afford. Furthermore, there are a lot of alternative health things that I know would help, but they aren't covered by insurance. It is possible that the palate-widening might be covered, but I feel like they told me it's covered by medical insurance only if a sleep study shows there is evidence of apnea, and I did one myself and it was fine.
I've been thinking a lot about people who can't hear. I watched the movie Sound of Metal and it  captured how I felt trying to talk to people about what was going on with me. My actual hearing is fine; I just can't always understand. My brain tries to fill in the blanks, and it doesn't always do a good job. It's really tiring. Also, my verbal memory is not that great. Nobody I knew or saw regularly really seemed to get it. I am really terrified that it will happen again. Most people don't recover from the kinds of things I did.
Do people have people who check up on them? I used to have a lot of people who would check on me, but when I started having trouble with fatigue and verbal communication, people disappeared. It turned out I had a lot of fair-weather friends, which figures because I have to be one myself. There are a lot of fish in the sea, but I'm not likely to get out and meet them because there are so many chemicals out there (and viral mutations) that I don't feel safe anymore, and I'm tired of wading through materialists and non-materialists who don't understand what it's like to raise a family while you are disabled. My husband and I are both disabled. He lost vision in one of his eyes before we had our first child, and that absolutely does affect a person's functioning in the world, and how they live with others, though it does not qualify a person for disability. It makes it really hard to plug in to our community because we need to operate on a slower time scale.
Last year when I was trying to research all this, I was communicating with a retired EPA scientist who told me about the team of toxicologists which decides how safe chemicals are. It didn't take long for me, as a neuroscientist, to figure out that the field of toxicology has some major problems, especially with how our government is using it, from looking at the EPA's website. Toxicologists tend to think in terms of toxic and lethal doses, and these don't necessarily include the kinds of chemical exposure symptoms I was having that I found in the Neuropsychological Assessment textbook. There are myriad psychiatric symptoms that can show up long before exposure would be considered toxic by a toxicologist. I tried talking to one of my husband's friends who has a Ph.D. in Biology and he treated me like I was Chicken Little. I cannot get male scientists to take me seriously. I'm actually not sure I can get anyone to take me seriously.
Furthermore, most people are totally clueless about states of consciousness, which is a shame. Maybe if more people were aware, we wouldn't be in this mess. I am thankful that the toxicologists at the EPA have finally done what is right and spoken up about their approval of dozens of unsafe chemicals during the Trump presidency. I suspect it's been going on longer than that, though, and that the pressure from the industry turnstyle was just higher. Better living through chemistry, huh? I have known quite a few chemists who tried to feed me that line. I am done with it. It's not "better." It just is. For every good thing the chemical industry has made, it has also made something awful. Be honest.

I spent some time working with chemists. That's actually another big reason I left research. They were doing biological research, but had no understanding of the whole organism. We ran into so many problems because of this, from spending months and months trying to get an HPLC machine to read amounts of biological materials below the limits of detection of the machine, to being asked to restrain animals for months at a time so they could be continually infused with different compounds, to being asked to work with volatile compounds without a respirator WHILE I WAS PREGNANT. I stood up for myself on all of these occasions and kind of became a problem for them.

I am not going to shut up, because I SEE and our livelihood depends on people speaking up. If you finished a kitchen and got cancer, you need to speak up. I know there are other people out there who got sick from chemicals they were told were safe. Like many artists, I thought my acrylic paint was safe.

That's why I wrote this story.
A few years ago, I took modern art history, and it changed my outlook on life. Art history is very much a survey of the enlightenment of humankind. Through it I became interested in the collective consciousness, and began an informal study of Jungian psychology. I have been wanting to express my own ideas about consciousness, which are relatively complicated, but not, and haven't been sure how to do it.

A short time after I took art history, I put out a challenge to The Universe to play a little game. (It wasn't supposed to be War Games! I was kidding!) I waged a bet that the reason that “There Are No Great Women Artists,” in the words of Linda Nochlin, is because women are still doing the majority of emotional labor for humankind. I know that because I spend much of my days helping others with their anxiety and health issues. Even if I didn’t know all that I know, that would still be my job, because I am a mom. It takes a lot of my time to offer the right advice to encourage independence. In the wider world, I gave away my professional knowledge with no expectation of remuneration or credit. I did it believing that not only was it the right thing to do, but that if it was, it would eventually come back to me.

It's Nice to Magritte You, marker on coffin (coffin currently NFS)

It’s been difficult to be an American mom. I certainly didn’t go into it with any sort of adult understanding of the hardships of life, which I had been mostly sheltered from by the school system. Out of that I had arisen as a young adult, bright-eyed and optimistic, only to be faced with substandard pay and hazardous working conditions. It felt dystopian, since I was raised to believe I could do anything I put my mind to. Then, I thought it was a problem that was inherent only to my situation, so I decided maybe I could contribute more to society by trying to raise kind children. I really wanted to try to be the change I wanted to see in the world.

After taking art history, I also became greatly inspired to try to express my ideas about American life. I started dreaming up a body of work, and I wanted to at least try to create a few of the pieces someday. One of my ideas was to recreate a moment in my memory that I felt was life-changing to me, and was to many people in the United States, and probably the world. I felt like the memory was crystal clear, but as I get older, I am finding my memory is not as great as it once was.

Back during the era of the artist academies in Europe, it was considered a work of mastery to be able to paint something of “academic size” and in the style of the masters. For my presentation in history class, I chose to study Alphonse Mucha, because I have always been drawn to the way he depicted women like goddesses. Because his work was popularized originally in print media and is reproduced to this day on small items, I did not understand the scale he worked on, even as a printmaker. The original posters he designed that catapulted him to fame were life-size depictions of a famous theatrical actress. But those, in his mind, were not his greatest accomplishments. That regard went to a series of 20 paintings called the Slav Epic, most of which were approximately 26 by 20 feet and depicted the struggle for liberation of the Slavic peoples from serfdom. Much of the story of the Slav Epic in its painted form revolves around finding places to keep the monstrous creation throughout the many wars in the area; although the work is made to decry the effects of oppression on others, it requires access to great resources just to store it.

This is the thing I always wondered about becoming a successful artist. To become a successful artist, a lot of time is needed to develop one’s technical skills, calm is needed to develop one’s way of seeing, and a great deal of space is needed, too, for the creative activities, materials, and finished products. I know quite a few very productive artists who go through giant tubes of oil paints, the cost of which would choke most people I know. Very few people in the world have the resources to store canvases of that size. Furthermore, the painting techniques required by the academy to paint like a master involve many layers of transparent glazing which can require months to dry. I got to learn this technique in college, and it captivated me because I grew up the child of two glass lovers. My father grew up near Steuben, NY and so my memories of visiting the Corning glass museum and the prismatic color there influenced me greatly as a child. My mother was an educator and an artist, so when I was very young, we often took community art classes together. One of the things we did was learning to make stained glass when I was eight; this led to my mother creating a glass and pottery studio in our basement where we both designed and made our own pieces for several years.
On Time Travel, Art and Suffering, marker on coffin (coffin currently NFS)

When I was a kid, I was given a lot of opportunities to learn skills which others may not have seen as developmentally appropriate. I loved these experiences, and they were an important part of making me who I am. I received focused one-on-one attention from adults which was not something most of my peers got. Plus, these experiences were in collaborative and creative settings, which affected how I learned to relate to people. Relating to adults in the context of being creative and collaborative is so different from what I experienced at school. It gave me a different bar for human relationships.

When my mom started working, we didn’t do these things together anymore. I think she was too tired. She originally went to work because she was bored and lonely at home with my sister and I at school. I don’t think she had the time available to paint the Slav Epic while I was at school or anything; my point is that the little time a woman has around housework and taking care of children is barely enough to restore herself, let alone perform a job or paint even one academically-sized painting and figure out where to store it.

A few years ago, I picked up two large 4 foot by 5 foot canvases during a sale, and hoped to make a diptych for my living room. I had lots of crazy ideas, including male and female tardigrades playing on the moon; one could be male, wearing argyle socks and golfing into a moon crater; another could be female, reclining like Olympia on a settee with grapes and the requisite black cat. But then something turned my mind to working on the body of work I had conceived shortly after taking art history, and I decided to recreate that life-changing moment.
Where the Streets Have No Name, 8"x8", Inktense on paper, $31K USD ($30K proceeds to go to The Archibald Project - to hell with golf and argyle)

On the morning of September 11, 2001, I was nursing my nearly 5 month old son down to sleep for his morning nap, while watching The Today Show on NBC. There was a distinct way the sun came through the window every morning next to the entertainment center where we had our 19” television, which I had been lugging around with me since college. At that time of year, the fireplace would have had just some family photos in frames on it, rather than the decorations that I chose to depict. I thought for a long time how to achieve a dreamlike quality in the painting, or something reminiscent of looking through a rainy glass window or eyes full of tears.

The first hurdle I had to overcome was that I simply could not afford to work in oil at that scale and use solvents, because of my health. I happened to have a lot of acrylic paint around because several of my artist friends had been involved in painting fiberglass heart monuments to place around the city, and one of them had shared with me the type of paint they were using that was easy to work with and held up in the sun. Because I bought it in huge quantities, so I could share with the kids (kids and acrylic, right?), I had plenty to use on my large canvas.

I had taken acrylic painting in college and won a major award for my work, but didn’t really care to work with it 26 years later, because of having to reacquaint myself with its character. That would be an important part of the process of working on this painting. As I struggled with knowing what to do with each layer, I kept myself busy with other smaller works, which would then inform the larger painting. I developed an investigative process.

Any layered painting starts out with something called an underpainting. I have used underpainting techniques in most of my other works, no matter the media. When I first got involved in the artist community in my town, I had a dialogue with several different artists about the techniques of the old masters, and in particular one of the friends I made was keen on developing an underpainting technique using charcoal, but in such a way that the charcoal did not vanish, but lent value to the painting. At that point, we were working in oil, and with my son, and ended up fixing the bottom layer with spray Damar resin (which imparts a hard glassiness and is an important ingredient in glazing techniques) before applying thicker coats of paint over the top.

In my own self education as an artist, I studied a lot about the archival properties of various materials, and so settled on working with the best materials in my own practice. It means that I worked with museum quality materials, and I have done so since I was a child because the importance of working with decent art materials in avoiding frustration is paramount. I have also for this reason procured only the highest quality materials for my kids to learn to make art, too. In any case, there are rules for working in layers because of the chemical properties of media, to avoid peeling in the future. The works of many masters have had great damage to them from age or mishandling (removing canvas from support and rolling it), so anything I can do as an artist to prevent premature aging of my work, I try to do.

I did not want to spray anything in my studio, because I knew I would be sensitive to it. But I also had this enormous image to transfer over to the canvas. In my mind I wanted the underpainting to be kind of vibrant. Underpainting in contrasting colors can give a life and vibrancy to a painting that just sticking to “what one sees” just doesn’t. So, I conceived of this idea to paint the photographic negative of the image as the underpainting, starting with a charcoal value study. I divided the canvas into a large grid and copied my sketch over.
Reference collage with grid

I had made the photographic reference for the sketch by going through all of my photos from that time of our home, knowing that I had tried to take some photos of my son nursing from my perspective. I had taken some photos of how I decorated, some on film which were scanned in years ago, and some digital, many close enough to the vantage point of where my chair was, so I had a few to work with. I printed them at different sizes until they made sense when I cut them out and put them together in a collage. I had a photo of my living room plainly decorated with nothing on the mantle and my final acrylic painting project from the class I took over the mantle. I had one that had the entertainment unit from the right vantage point, but the fireplace was cut off and skewed, and then I had another with the fireplace mantle from the right angle, but with my hand-quilted Christmas covering, and homemade felt stockings in it. Although in September it was not Christmas, I ended up realizing that in my mind materialism and Christmas are very much in bed together, and tied to the reason why we felt it necessary to engage in war for the last 29 years, and that I had an opportunity to make a statement. I figured I would go in later and put in the nativity and family photos once I could get them just the way I wanted.

After successfully creating the collage, I scanned it into the computer and put grid marks on it before importing it to my phone where I created a negative image using an app. I then had to send it back to my computer so I could print out my finished reference.

The underpainting at first was quite crude, and I made the mistake of trying to remove the grid lines with a bit of turpentine, because I couldn’t get them off with just an eraser. This removed the gesso that had been factory applied, so then where I went over my drawing, it was darker. I thought it was totally borked until I summoned up the energy to put my trompe l'oeil (French for "fool the eye") skills to use, which took some time.
Picasso makes me cry

Picasso said that every act of creation is first an act of destruction. So sometimes when I am at an impasse with my work, which I thought I was with my powdery charcoal underpainting and no way to fix it to the canvas safely, I will try to channel a state of artful berserk to see what happens. I seriously didn’t know how to fix the drawing onto the canvas, and so I did a child-like test piece with an automatic drawing in charcoal as an experiment. I went over the whole thing with painterly-applied gesso. It had a very dreamlike quality, so I decided to go all in on my big piece, and to my surprise, the result was like looking through tears.

I thought at that point, maybe it was done. Sometimes art is about knowing when to stop. But after a week or so, something was bugging me, and I realized it was that the painting could be interpreted as racist if I didn’t do something to change it. I am actually very worried about being racist, and so I spent a fair amount of time thinking on what I needed to do to fix it. I thought about starting all over again, but what if sometime in the future someone decided to X-ray my painting and interpreted what was underneath as racist? So then, I thought destroying it might be the better option.

I moved it off the easel and into the little room off my studio where I keep my personal library. I listened to music and stared at that painting for a long time. Then, one night I put on some led oscillating color lights, and the painting took on a new life. I tried to imagine how I might share the experience I had with another viewer, and so I created a digital representation of what I saw. But requiring special lighting would be cumbersome to set up in any of the galleries I used to frequent. Not that this painting would fit in with any of the other works there. There’s simply too much pain, and the places I showed my work concentrated mostly on selling the work of more traditional art, not academic art.

But then I realized if I just continued working on it as an underpainting to what I had originally imagined, the possible racism would no longer be an issue. So, I started applying glazes of color to make it look just like the photographic negative I had created digitally.

As the holidays rolled around, I was becoming progressively more and more sick as I worked with the acrylic and tried to manage the holiday stress. On the mantle in the painting, I had intended to put family pictures, but would have had to go to the trouble to find them, change their aspect ratios and whatnot and convert them to negatives of the right size. I was becoming increasingly detached from my family through the process. My aphasia was getting significant, my husband was having to work extra hours, and he had emotional obligations to his extended family, so between my holiday preparations and painting, I had become a ghost. Nobody seemed to miss me or care, so I decided they didn’t need to be put in my painting, and another layer of meaning was added to my painting through the absence of content.

Lies My Teacher Told Me, Acrylic on Canvas, 4' x 5',  $113M USD ($111M USD to provide air quality meters to people on Medicaid)

Unfortunately, I became too sick to finish it, and this will have to be its completed state. The surface area is just too big to work on safely with the amount of formaldehyde and VOC I discovered is emitted from acrylic paint indoors. Working outdoors is unsafe for me currently because of my skin sensitivity from erythropoetic protoporphyria, which has worsened either due to my current body burden of toxins or age-related decrease in melanin, which once protected me.
Meditations on Minerals and Inside Jokes, marker on coffin, currently NFS

To work safely with acrylic at any size, an artist needs to be in a well ventilated space, and it would be very costly to create a residential basement studio that was truly safe for that media, or any media that requires good ventilation. This has to do with how home HVAC systems work and the way homes are pressurized through the pulling in of air from lower levels of the home. I know a lot of artist studios end up in basements, and hobbyists in general end up working in a lot of unsafe conditions. It was, realistically, ridiculous that I ended up in the situation of becoming ill from my hobbies because I should have known better. I have witnessed other hobbyists developing fatal illnesses in my community from failure to consider the hazards of their hobbies, and so I decided to write a book about it.

In this painting, I wished to express the disintegration of the American Dream for me and future generations by the effects of the materialism endorsed by the Baby Boomers. What I saw when those planes hit the towers was not an attack on America; I saw it as an attack on our misplaced values. I saw it as an attack on a system that grinds poor people into dust through espousing worship of monuments to men. After my tangle over chemicals, remodeling and infectious disease with my extended family, I opened Thoreau’s Walden, which I had read in college philosophy, to the following pages one morning:

Removed from my paint, I switched back to pen and ink, watercolor and gouache for a time while I recovered my language abilities through writing a book about living with mental illness, which I plan to share on this blog. In it, I explore the idea of what mental illness is from the outside and the inside and my own thoughts on healing.

Soon, I hope.

Postscript 16 January 2022 - My daughter took an acrylic painting class at the local community college this past fall, so I had another chance to verify that even riding in the car with the paint made me sick. It was frustrating to have to deal with this in my own community and home after working so hard to spread the word. People who suffer anxiety, memory, neurological or sensory integration issues should probably not be working with acrylic, and so its use in schools is questionable. I did notice that the day after class she was rather absent-minded, and she had to drop her Trig class that semester because it was too difficult to learn over the computer, despite having done just fine in College Algebra. She is an exceptional student, so it was odd that this happened.