...Continued from Chapter 5: A Life of Illusion: Chapter 5: I Could Use Some Friends for a Change
For over a year now, Dot has been measuring her media consumption as not to feed her anxiety. She only logs on to her Snapoid account when she is going to share her writing or art, because it tires her emotionally. It is very much an expression of the collective consciousness, which definitely has its ups and downs. Her feed is pretty gentle; it’s just that she has a lot of other things to do, and there aren’t enough hours in the day, anyway. Social media is the quickest way to feed her monkey mind. Besides, she spent a lot of her life online before, and she kind of wishes she had that time back. She hasn’t been checking the news because Bert and the kids do; but she does like to get COVID updates from SciShow, as they seem to provide information in a responsive rather than reactionary manner. They are, as good mentors and teachers are, good at pointing out what we don’t know, and what the safest bets are with the information we do have. Dot really appreciates that as a scientist, because she was trained to work in a government Biosafety Level 4 lab engineering retroviruses. The levels go from 1 to 4, with 4 being the greatest risk. Because of this, Dot has what she considers a healthy fear of genetically engineered viruses. In the beginning of the pandemic, coronavirus was classified as Biosafety Level 4 for research.
A lot of things have changed since she originally wrote this chapter in the Spring of 2020. There are some old ideas she has decided to preserve to show how her perception has changed over the course of the pandemic, and so she has decided to engineer this writing like a conversation between her Past (April 2020) and Present (October 2020) selves. There is so much to communicate, and so much of it was painful and required a certain amount of pot valor to write, and was impossible in the first person. Initially, she was only able to write in the third person, a trick she learned which helped her process a lot of trauma. As she healed, it felt a little disingenuous, but she also had the fortunate realization that the approach served as an appropriate butt cover since a lot of her healing involved some serious questioning of the status quo with respect to classism and nutrition.
She feels all these things very deeply - deep enough that writing causes her physical pain because she sees these things as the root of all the pain and suffering in the world - pain and suffering we all bear. Much of this is due to most people being blind to the energetic results of their own actions. There is a belief in Gnosticism that life was joyful until the creation of a demiurge by the gods on accident, and they have been trying to identify the demiurge to fight it ever since. Dot thinks the demiurge is the belief that we have to earn our right to space in this world, and that this demiurge is the root of much of the pain and trauma, because it causes people to not know how to just be, or even allow others to just be. She thinks chemical exposures, problems with food quality, and systemic race-based trauma all feed the demiurge. She still has to battle this demiurge daily, because as a mother in isolation, it's hard to know when it is okay to slack off. The demiurge has thrived on the sort of moral authoritarianism rampant in societal child-rearing advice, so it's hard to know when it is okay to relax. Consequently sometimes it is hard to know what activities constitute a waste of energy and resources due to being fully egoic pursuits created by the demiurge.
April 2020: I used the rest of some old bags of frozen fruit to make a smoothie. Well, by this time, because of the rationing I am doing, it is more like milk with a little fruit in it, but knowing that this might be the last frozen fruit we may have makes me panic about being able to get produce of any sort in the future. Not that we were ever much good at eating fresh produce, anyway. I have lost count of how many times I have had to sop up moist slipperiness from the inside of the crisper drawers. Sometimes I just put the fruit in the middle of the fridge so Bert and the kids will remember it is there, but mostly that serves to remind them that the guinea pig needs a treat. Poppy the Guinea Pig’s dwelling is within earshot of the refrigerator, and whenever she hears the rustling of plastic packaging, she eagerly bites at the wire enclosure, hoping for a treat.
October 2020: Poppy passed away one day in June. I had noticed her slowing down over the years, and she would have periods in her last 6 months where she became extremely lethargic. I gave her extra Vitamin C for a while, and this always seemed to perk her up. But one day, we all had this feeling of dread - it was after I had discovered the VOC issue in the house and that it was somehow tied to the depressurization. We may have had a big plume come through the house in the days prior; that was a frequent occurrence back then before we discovered all the sources of volatile compounds we have found so far in our home. During a plume we would often feel elated, and then two days later, we would have a crash. We were all clearly having a crash that day. I had the distinct sense that death was near; I don’t know how to explain it other than I had a dream that morning where I saw Bert, the kids and I like we were posed for a family photo, and we all faded away and were replaced by a skull and crossbones. I don’t usually have bad dreams. I used to think they were caused by gut serotonin, because if I got them, it was usually after eating something like beans. I actually didn’t dream much at all in the past, or think about dreams much. But after what happened that day with Poppy, I pay attention to my dreams, and I make sure to listen to Bert’s, Henry’s and Lily’s dreams, too. I now know when I see things like that in my dreams, it is more about subtle than large energies. Visions involving symbols of death just mean some sort of transformation is coming and, except in the case of Poppy's passing, have been good omens.
Our dreams often end up predicting what happens to us over the course of the day. I realize this is a strange thing for a scientist to say, but it has been going on long enough that I feel confident I can say it. This time alone has also helped me see how other precognitive dreams I have had in my life were significant still to this day. I had to get deep into Jungian psychology to be able to decode the symbolism in the dreams, which was mostly fun. The only times it wasn’t fun were times when the poisoning was an issue. This usually meant health problems in the form of neurological or digestive issues, or mental health problems in the form of difficulties with attention, memory, communication, sleep, fear or anxiety, which could include several of us at once, and often two of our pets whose digestive problems were so bad they would stop eating. I can’t remember who had it, but either Henry or Bert had a vivid dream about death that evening as well.
Just before Poppy’s death, I had been having a disagreement with Lily over her desire to go grocery shopping. She was frustrated with me that I was doing it all myself, which I was doing because I couldn't handle the complication of including another person due to my vebal aphasia. She wanted more responsibility, it turns out. I, who was pretty tired of having to be responsible for food all the time, couldn’t understand why she would want to risk her life for that particular responsibility if she had a choice, and didn't know how to express this in a way to her that didn't cause her unreasonable fear. It seemed like one of the most important things I do for the family to keep them safe. She was feeling like life was passing her by, and no matter how hard I tried, I couldn’t get through to her that grocery shopping does not make a meaningful life, and can be the basis of a woman’s enslavement.
I was feeling enslaved by the circumstances created by the pandemic around food in a stronger way than I ever had been before. Before we got a health food store in our town, which was opened by another unschooling family, I used to have to travel to two farms and a health food store in another city to get us safe food when she was a small child. I often timed these trips so she would nap in the car, and it turns out that she does not remember this. That’s how much work I had to do each week to escape the American industrialized food system which creates illness through the additives, inexpensive industrial seed oils high in omega-6 polyunsaturated fatty acids, and pesticides used to increase profit margins. Being able to have safe food delivered to my doorstep during this time has been nothing short of a miracle. I just wish I didn't have to scrub my chips! I am so thankful for the people who are working in the grocery industry, and I am thankful to all the people over the years who created healthy cottage industry convenience food products to light the way for change and free women from the kitchen. I am thankful for the hive mind which is obviously still battling out what the best fuel is, although sometimes I feel it can be hyperfocused on achieving superhuman wellness for the privileged,rather than healing the sick, who may not be imbued with the same privilege, genetic or material.
Poppy the Pig is buried in the garden where I plan to put in potatoes. If I remember correctly, in addition to the strange dreams we had the night before she died, and also the disagreement with Lily over grocery shopping, I had not slept well. I remember thinking that I didn’t have confidence I would be able to keep myself together emotionally for the rest of the family or even myself if I lost another night of sleep. While I haven't hit rock bottom since I stopped going to Bert's parents' house, the parts of me which remember those episodes are terrified of them happening again. I think the cruelty is a really important facet, so I don't have contact with them anymore, which my therapist had recommended in 2017. It helps a lot, and while it may have nearly cost me my life to stay in contact with them, I am glad I did it the way I did because I may have never learned everything I learned about the chemicals. I did use the word "No" a lot more often with them, but that would be punished later somehow through a power grab, which Bert was particularly weak to because of how he had been conditioned by them growing up. It hurt how his family ignored my requests for better collaboration as if they wanted me to disappear, and it hurt that Bert didn't know what to do because they kept putting him in the middle. He always advised me to ignore them over the years, but they were too close for that to be practical. I just knew something was really wrong, but didn't have the words to communicate what it was in a way he could understand. They made him really angry through their entitlement to his time and energy. They were able to stoke an ire in him with their classism and ablism which lately he has been trying to communicate to them in more direct ways in their limited dealings. Some of our marriage problems over the years had to do with him believing I was of the same controlling mind as them, and some of that is my fault for long time I tried to gain their approval. If I came up with ideas to improve our home life, he assumed he had no choice in the matter, just as they never gave him choices or listened to him. He kept forgetting that I grew up in an old bungalow with peeling paint and an accidental torch burn on the kitchen cabinet from when my dad installed the dishwasher by himself, and that none of that ever bothered me. My parents were always at odds about where my father could do messy projects, which made me feel badly for him. I don't want my own house to be a place that is too pristine for creativity. In this vein, the room Poppy was in often had guinea pig turds on the floor because we weren't very good about vacuuming in there when we cleaned her cage. If the dogs hadn't been so obviously bloodthirsty, we could have taken down the baby gate that kept them out, and they probably would have been happy to provide vacuuming services. It's strange to not have to straddle that gate anymore, or the other one.
had been spending more time sleeping, and in the weeks leading up to
her death, I got the sense that I needed to keep a close eye on her. I
think Lily told me that day that something wasn’t right with Poppy, and I
thought maybe she needed her nails clipped. I had fallen behind on a
lot of things during that time due to figuring out how to operate in a
pandemic. When I cut her nails, she did not behave normally at all. She
really didn't want me cutting her nails, but simultaneously also seemed
like she wanted to be held, which was never something she wanted. When I
put her down on the carpeted floor, she turned back toward me wanting
to be picked up again. When she had been in her cage, she was laying
very still with her head jammed into the corner, which is kind of
how I have felt most comfortable when I have been at my lowest points.
Thankfully, I have not felt this badly in the last two years since I
confirmed that my own depression was actually metabolic and maybe life
threatening and not due to poor mental habits. An important key to this understanding was that Bert could
often pull me out of my catatonia or sorrow with some food, which made me wonder if suicidal
ideation was inherently metabolic in all people. The food in my house, specifically
carbohydrates, changes the tone of my inner dialogue for the better
every time, despite me never having blood sugar abnormalities through my doctor's testing, or the home testing I have done. I knew from having spent time with other pets during their
passing and their similar behaviors to try to find comfort that Poppy
probably wouldn’t make it through the night, and I was pretty sure a cookie wasn't going to help her, since she wouldn't take the lettuce we offered her.
I explained this to the family as we all sat on the floor in the “dining room” which is our makeshift gym and was also Poppy’s residence. It dawned on me that the most meaningful experiences I had in my adult life had to do with bearing witness to the processes of birth and death. With the recent grocery store discussion in mind, I let Lily know that having been witness to the births of humans and the deaths of animals I had cared for taught me something important about what it means to be alive and how magical life is. I’m not a doula but sort of was one for two births, which almost became c-sections until I pleaded to let the mothers change positions and get on all fours. One baby was almost 10 pounds, and the other 11, and the women were not related. I asked Lily if she would like to stay with Poppy in the night, as I had done with two of my closest pets.
I felt badly doing this to Poppy as she had come to me, and I had been willing to physically comfort other dying pets. I did not tell Lily how to comfort her because I wanted her to have her own unique experience with compassion for Poppy. Lily is extremely intuitive, especially with respect to animals, and quite a few of us have felt that she may have a future in healing animals someday. She has had a natural proclivity toward expressing emotions in the animals she draws from six or seven years of age, maybe from the close relationship she has with our dogs. She decided she wanted to do this, and although she sensed and confirmed Poppy’s passing in the early morning, she did not come to me to tell me until a more reasonable time. She told me in a very matter of fact way, demonstrating that she had somewhat wrestled with the gravity of the situation already. We figured out Poppy was at least 7 years old. I still wonder, though, if Poppy would have made it longer had it not been for the water heater backdrafting. Her tired spells definitely seemed to correlate with my own, and also with some of the other wellness struggles we had in our home, including life-threatening digestive issues that plagued our smaller dog and rabbit in a cyclical fashion despite no changes in their food or living situations. These have also been resolved since we got rid of the gas water heater and replaced it with electric. Bert had said before that when he was in engineering school, he learned that gas water heaters are the most dangerous thing in a home, and didn’t like having one in ours.
Despite everyone’s bravado, and even my own, I don’t know many truly healthy people. Everyone has some sort of major health thing they deal with that they otherwise keep quiet about, but impacts their daily lives, or they are caring for someone with a health struggle. For some reason, people tell me everything, and it has enabled me to see how everything is connected to the pain we all endure. Many people struggle with mental health issues and do not see them as being connected to their diet or environment. Society likes to use exercise as a classist and ablist band-aid for these problems. My great-great grandmother who lived to be 96 likely never went to a gym or had to have a daily run in order to function. There are clearly factors in living present now which affect wellness that she didn't have to deal with in her day. She was already 68 years old when World War II ended, which is about the time man-made volatile compounds really started to impact daily life for Americans.
I suppose I could say that I discovered without a doubt that We’re All Mad Here, and it’s a strange thing to understand so personally. There are very few mothers I have known who have not been on some medication for anxiety or depression. I have wondered if my doctor really understands the societal significance of this problem. My own sister is a doctor, and I am pretty sure she didn’t have to learn enough psychology to be able to identify when a person is not themselves. Learning to be able to identify this in my own self took a lot of investigation. I have never felt like this for long periods of time, and it doesn't happen often, but the excessive amount of exposure to chemicals, stress and vegetable oils I was exposed to over the last few years being so close to my in-laws and trying to be social with others triggered a state in me that is a lot like what this veteran has been experiencing. I think a lot about how many people are out there with untreated mental illness, and also how the psychiatric system actually makes people worse through forced hospitalization and reliance on pharmaceuticals, rather than helping people reach their full potential as divine beings of light by freeing them from the toxicity of white classism.
I was in the uncomfortable position of having to try to explain to another (much older white male) scientist that my “mental illness” is precisely the reason I was able to figure out we were being poisoned. I was rather irritable when I was trying to explain that things that make me irritable are not good for me, and that figuring that out is an important part of intuition and knowing what is good for one’s own health. There are people who are so out of touch with their bodies because of antimetabolic factors that they can’t even feel a fly on their foreheads. They can’t feel with their hearts at all, either. To explain to someone who can’t feel that space what they are missing is an impossible task.
Having felt that emptiness and need for some authority to comfort me, and knowing how to fill it back up reliably due to everything I have experienced healing from environmental exposures, I feel responsible to share what I have learned. I am still healing; I still have my ups and downs because of hormones, mostly. Chemicals suppress thyroid function and have estrogenic effects, so it makes sense that a higher body burden would mean tougher hormonal cycles. Each nadir in my estrogen has been easier since removing the water heater, so my body burden must be lessening. It would be nice if doctors understood this better, because there are therapeutic approaches they could use with their menstruating female patients that would probably have a great societal effect, like more minor and intuitive approaches to thyroid support that honor the woman as a cyclic being, rather than a picture of a thyroid test once a year.
I was just thinking last night about what “normal” was for us a few years ago when we were 3D printing with ABS (acrylonitrile butadiene styrene) plastic in the garage without proper ventilation, had the collection of construction adhesives and paints from old house projects, and a gas mower and trimmer in there as well. I learned using the first VOC meter I purchased that in the summer when the sun would hit that corner of the house that the garage would warm up, all of these things would offgas, and the resulting plume could enter our home easily via passive diffusion through the walls. This was something I had read about years ago, and had been warned about by a retired EPA scientist who is a friend of the family. But when I couldn’t see these things, it was so hard to believe they were a big deal. By paying attention to how I felt and how the people around me were behaving, I was able to find a clear correlation with plumes of volatile organic compounds in our home through investigation with an inexpensive handheld personal meter. At the time we were also using All Free and Clear laundry detergent, Dawn dish soap, Finish dishwasher tabs, bleach, Meyer’s products, Method products, Windex, Nature’s Miracle and other cleaning chemicals I assumed were safe, but discovered to be large sources of both VOCs and formaldehyde. I learned that the retired scientist, who suffers from similar health issues to my own, made the very same assumptions about the very same products for the same reasons. What is most upsetting is that these things were impacting our mental health in extremely subtle yet significant ways that were affecting our relations with each other. Luckily, I have a wonderful friend who struggles with similar health problems who was able to corroborate these findings in her own home. That was very helpful.
I feel like it was about a year or two ago that Bert read somewhere that many people walk through life in a fugue-like state. Having recognized when that was happening to me, I have wondered if people who live alone know when they are overly dissociated. I believe I spent a lot of time in dissociated states before. I often didn’t know until I had an interaction with someone else that I was having difficulty with some of my higher cognitive functions. Some of my communications with my single friends have shown me that we don’t always know when we are in that state. People I have previously known to be rational can suddenly be distrustful and fear-driven, and then not remember it later. I have certainly done this, too. It’s like being a scared child. Three years ago, I learned that not everyone remembers what they say. And also, that people say a lot of stuff to fill the space out of nervousness. It’s not always good or productive stuff, and thus I think the ego can sometimes block the memory of what was said. I think people who are good speakers have cultivated a calmness and really are able to tap into the parts of the brain required for listening, talking, and memory. Chemicals are clearly a challenge to that ability, I see. It took me a while to see that even I would say unproductive things just to fill the space when I was nervous. It makes me appreciate the written word even more, because I’d like to think that people put more thought into what they write, but I suppose not everyone edits what they write. As a writer, I know I can feel pressure to release something just because it is timely or relevant, but good writing withstands the test of time, so revision is never a bad idea.
Since we removed the backdrafting water heater and all the other chemicals we could find from our home, we are all much better at remembering what we say. The differences are subtle within each of us, but profound in our relationships together. We are remembering to do things we say we will do, and not taking on more than we can handle. This is making life easier for all of us, and everyone is a lot less anxious. I can still do too much, but the attacks I have now are not panicky in nature, and I don't ever feel like I need to question my worth as an individual anymore, like I often did after being exposed to construction chemicals. The water heater certainly made me tired, panicky and grouchy, but it never made me feel like hurting myself. There are clearly compounds in paints and adhesives that I react to even more strongly than a backdrafting water heater or detergents. Perhaps that was because it was paired with so much trauma.
Doing too much now just means I end up having to nap more. This is why it can still take me a while to answer people's messages. A few years ago when I was active on social media, I hit the wall health-wise and ceremoniously posted a video of waving a pink flag as surrender. I have written quite a few chapters beyond this one, and I had to write a surrender of this sort in a future chapter in June around the time Poppy died. I'd like to preserve it, because although I may never feel without words again, it was a sort of magical moment. I have developed an even deeper appreciation for the psychic works of artists, writers and musicians during this time, and the eloquent way they make use of dissociative states for channeling healing messages. It has been a gift to experience and understand this style of communication from the inside.
We are still throwing away produce I get at the grocery store. But at the same time, I also had my most successful gardening year, and we have a constant stream of ripe tomatoes in the kitchen without having had to put anything up yet. It occurs to me that we would probably waste less if we were growing most of the produce ourselves, because for the most part, things can be left on the vine, especially in covered rows. I’m hoping if I can get a little more investment in the garden from the others now that things have calmed down that we can improve our eating habits and consumption so as to take some pressure off the food system for those who don’t have time or land to garden. If my family doesn’t have time, and I am low on energy, I am still just going to throw a bunch of seeds in the ground next Spring to see what happens.
April 2020: I have never been much for yard work, but I still decided to plant a garden this year, due to wanting to reduce my burden on the system. It’s not like I have never done yardwork or that I couldn’t do it well. It makes Vincent come out. Only, I didn’t recognize him at the time. When Bert had lost his job 11 years ago during the massive layoffs that swept the tech company in our town, I could no longer afford the $500 community-sponsored agriculture (CSA) share fee. I knew plenty of gardeners, and decided it would be better to put that money toward building some raised beds and bringing in some 3-way topsoil, and seeds. So, that’s what I did. Every year for the next 3 years, I would put seeds into the garden and enjoy the early parts of the growth cycle. But, as I explained to my neighbor who gardens next door, every summer I struggled with my health, especially right around harvest season. So, I wouldn’t get out to water, and I definitely didn’t weed.
There were other things that happened that made gardening difficult, even though there was never a plague of locusts. Irrigation was a problem the first few years, and then I put in a drip line. The sprinkler system valves froze the next year and it took us a few months to get the parts that would fit inside the box without redoing the whole thing. I seem to get enough birds to keep the pests down. Every year I gardened I learned more about what to do and what not to do, so that I felt if I were ever to start gardening again after stopping in 2013, I might have a better go at it. For one thing, I wouldn’t put too much effort into things that require a lot of water and don’t have a significant caloric or taste payback. I'm looking at you, summer squash and eggplant! I am really inspired by what the Netherlands has done to increase their food yield such that they are the number two food producer in the world, despite being one of the tiniest countries size-wise. I don’t necessarily want to have to use so much technology, though. It takes too much thought.
Because planting season was right at the beginning of the stay at home order, and most of the online seed stock had been purchased already, Bert and I decided to see what we could grow from seeds in the produce we had in our refrigerator. I knew from previous years that gardeners often plan for the next year and purchase their seed stock in the fall, so much of it is gone by March. It turned out a lot of seeds that I have kept for years and also seeds in the produce in our refrigerator from cantaloupe, tomato and peppers are viable, which I was able to determine by sprouting them in wet folded paper towels in the refrigerator. Bert participated, too, by harvesting the seeds, cleaning them, and putting them in soil in egg cartons we saved. We had hundreds of seedlings between our efforts, which I recently transplanted into the garden. I don't normally grow tomato from seed, and my understanding has been that in Colorado it is difficult to do. I didn't bother hardening them off because I am tired and there are so many of them. We'll just see which ones are the strongest. If this process goes well, maybe next year I can share with my friends and neighbors. My friends have shared some edible perennials (onions, tarragon) that are still well established in my yard, and for which I am grateful. I’m not sure all our effort was worth it this year, but I’m glad I know how to do these things and that I’m getting better at them. Would my time be better spent doing something else, though? Everything feels like life and death right now.
One of the reasons Bert and I had purchased the house was for the trees. Over the course of the 14 years we have lived here, we have lost one Japanese maple tree, two gigantic willow trees, and about 5 giant aspen trees because of global warming. Our once sheltered yard is now pretty hot in the summer. So, none of us spend as much time outdoors as we used to.
I learned many things about gardening, and even how to put up different vegetables in different ways through the experimentation I had done with Bert’s mom before they moved back. My favorite method was dehydration because it doesn't require many hours over a hot stove. The gardening project was more than I could handle on my own with everything else, though, and Bert’s mom was busy with her own garden when she moved back in 2012. She brought in new dirt every year, and often borrowed our wheelbarrow. So when I had time and energy, I didn’t have a wheelbarrow. They aren’t neighbors, so getting it back isn’t as easy as it would be if I was sharing it with a neighbor. One of Bert’s favorite stories is how his dad called up to inform Bert that they had a dirt delivery, and that Bert, the kids and I needed to get over there right away to help move it. It was right in the middle of the week, and we had no notice!
What I remember most about this strange experience is that while we were moving the dirt, Bert’s dad kept sweeping the driveway at the base of the pile after every single shovel full was removed. I had never barked at Bert’s Dad before, but I did that time, because he was making no sense (not in a good way) and making the process take much longer than necessary. But that’s exactly the kind of “making no sense” that we have noticed about his family. Even while moving dirt, it had to look perfect! There was a time when they owned several acres in Oklahoma and his father was intent on keeping all five forested acres perfectly manicured. Or the acreage in Florida which had to have every palm tree trimmed every year, and every single fire ant eradicated.
They appeared quite snobbish, even though they considered themselves down to earth. Everything was so sterile. As people age, they can have difficulty with complications in their environments, and ever since they had built their first house right after I met Bert in 1993, they were obsessed with keeping their home looking like a model. Bert’s Dad became notorious for repainting the baseboards if he was unhappy with their whiteness, and I now recognize this sort of behavior as an important part of the fugue state. It was like “We’re painting the roses red” all the time with them. And they were really painting something some color all the time. Every time I would drive by Sherwin Williams and see the logo indicating the desire to "Cover the World" I wondered if Bert's parents were hypnotized by it. It was like “Live by the Pantone, Die by the Pantone,” and yikes if that isn’t materialistic snobbery. Bert’s mom had explained to me years ago that she was concerned about his Dad developing Alzheimer’s, and I see now that maybe these were signs of risk in both of them. I'm pretty sure they never looked up the MSDS sheets for the products they were using, or they would have at least used proper personal protective equipment during their frequent applications. Or, they would have seen that the products were clearly found to have been connected to cancer, which Bert's mother suffered with several times.
Specifically, it was she who expressed to me that she thought it was normal that people forget what they say, so clearly she had a lot of experience with it. I had a specific experience with her where she suddenly changed personality and told me, “You know your daughter isn’t going to like you forever.” I suspect she doesn’t remember saying that. Everything was a little Dr. Jekyll and Mr. Hyde with them, but nobody ever remembered themselves having been Dr. Jekyll. And of course, to be fair, I didn’t always remember being Vincent. Such was life with chemicals. By being so focused on having the perfect home, they had mortgaged their souls.
Bringing new dirt in every year is ridiculous, regardless of dementia. I’m not even a person who composts. Nonetheless, I had to bring in new dirt because much of what was in the beds had blown away. I plan to try to make this dirt last. What was there when I investigated still had a lot of wonderful worms and other bugs beneath the top two inches, and that was after seven years of letting it go fallow. I am thankful for the friend who warned me about the hazards of tilling so many years ago. I had started these beds with the lasagna approach, and that was how I intended to keep it.
October 2020: I have a totally different view of gardening now, evolved even from the days when I was a CSA advocate and hosted a pickup location. The effort was clearly worthwhile because gardening was way less discouraging this year. I know from previous experience it is a learning curve, so it is nice to have not gone backward despite the long hiatus. I had tried desperately to find a last minute CSA share in the Spring, and even reached out to a friend who I had purchased lamb from in the past, but none of my requests went answered. I tried to explain about the discovery of my erythropoetic protoporphyria and how I have to avoid excessive sun exposure to my friend and the farms I contacted. I got a real schooling trying to get help getting my family food from the local foodshed which I had spent so many years supporting. I got absolutely no support, except for our local dairy, which I see as nothing less than a heroic operation. I really didn’t have a lot of reason to believe in people early on in the pandemic because of this and some other things. I understand now nobody knew what to do, and everyone was overwhelmed, and that is still going on for a lot of people. Grocery delivery services really came through for me, though, and I am very grateful for the corporations that worked to organize this useful service on society’s behalf. There are still many things I can't grow that we need to eat to be healthy, and veganism is not an option for us because of many genetic factors. Our grassroots systems, while good in theory, are just still not up to providing high quality food to the people who probably need it the most, and so I am sorry to say but I think they have a long way to go. Or that’s my experience, anyway. On some level, it feels like trying to buy concert tickets. That is also something I don’t do, because the lemming mentality seems to beget a scarcity mentality.
I had been eating a lot of traditional foods in the years leading up to 2013 when the local Weston A. Price Foundation chapter became active. I had been a volunteer for the organization on the internet before the local chapter got very big. As it did, suddenly foods that had been affordable like organ meats became harder to find and more expensive. It's interesting how white people can do that so quickly. I suppose one might say that white people are the invisible hand. I wonder if there were people who were relying on these foods for health who may have had to give them up like I did. Organ meats have been important keys to healing for me, and up until they were popularized, most people didn't want to eat them because they sounded gross. I'm not sure they actually need to be eaten as often as the organization made people think.
What I used to do to get us high quality food when the kids were young was drive to two farms and a health food store in a different city every week. This took an incredible amount of time and fuel, but we learned a lot in the process. For instance, I know such trivium as the reason the grassfed milk tastes awful right now is because there are likely noxious weeds growing in the pastures where the cows are grazing. Milk from grain-supplemented grassfed cows like at our local farm which delivers is not as prone to off taste at this time of year. Yes, the fatty acid profile, animal health and environmental impact is better in pastured animals. Grasslands are incredible carbon sinks. But disabled people and people who have to work can’t necessarily put that much effort into procuring special food. I can’t do that now, and it doesn't make sense to import bad-tasting UHT pasteurized grassfed milk from the east coast when our state is such a big player in the dairy industry, anyway. We have to live with the environmental outcome of feedlots already due to the fact that dairy farmers often don't have enough land to graze their cattle. Additionally, another problem I see with the grassroots food movement is that requiring people to all come to the farm to pick up food uses much more fuel than an efficient delivery route. I understand a lot of these operations run on member labor, and so the liability involved with delivery may be financially unfeasable. Perhaps the government should consider subsidizing farmers whose talents extend beyond monocrops, and maybe these problems will resolve.
Honestly, I didn’t realize how much of my time feeding my family took until I believed I had to disinfect every single thing that came into my home and I recognized the lack of creative time and energy I had left after all my homemaking. Despite not having to go anywhere, it was taking a lot of my time over the last 6 months to clean the items that came into our home, and I was reminded of the days of driving all over Northern Colorado just to get milk to treat our "dairy intolerance" which was likely just a reaction to additives. So much of my efforts over the years were way more than necessary. My fuel costs have dwindled down to near nothing, but just having the groceries delivered, it is still a big effort to get enough food to feed us. But, if I don’t have to disinfect everything, I suddenly have a lot more time on my hands, which is everyone’s dream, right?
I was confused this week when I heard the CDC said that there was no need to disinfect mail or groceries. I, like a lot of people, had developed strategies for trying to keep my family safe from COVID, which I felt were important due to my experience as a scientist and being a cystic fibrosis carrier, who, when not well, can catch things pretty easily. Thankfully, it’s looking like the situation for people with full blown cystic fibrosis might not be worse than the rest of the population! Some of these were a real burden on me. I sure hope the CDC is right. Early on, we were told how long the COVID could live on different surfaces, but now we are expected to believe that it’s safe to bring any surface into our homes without decontamination. Certainly the inherent physical properties of the virus haven’t changed. Many of the other things I have predicted happening have come true, so their revised recommendations give me pause. I can think of a lot of reasons our leaders might tell us not to worry right now, which might not be in everyone’s best interest, especially those of us with chronic health issues.
I am glad I persisted with gardening, even though it was really hard at times to balance with the other things I had to do and the other problems we had going on. I got an inside view of ablism and discrimination with respect to my health over the course of my life, especially from my close family who are fairly authoritarian in their approaches due to being part of the medical establishment on my side of the family, or having generations of body shame on Bert's. Living in Colorado is particularly bad because people pride themselves on the illusion of health, an illusion which has very little to do with actual mental wellbeing. Nutritionism, while also a helpful labyrinth, has highlighted a great darkness that I see in society where we expect people, who have no choice about their birth, to live in a merciless moral authoritarian prison state which fosters dog-eat-dog thinking about everything, even down to our basic needs, especially food and exercise. The strata in food quality are greatly responsible for the disparity in socioeconomics and intelligence among the classes. This is not the future I envisioned as a kid; I did not know what nutrition was, and still I was classified as gifted, which has made me question the motivations of many mothers I know whose children suffer from attention and behavioral issues despite being fed “perfect” diets and getting “enough exercise.”
My great-great-grandmother lived to be 96 and likely never stepped foot in a gym or worried about eating a little cake. Born in 1877, she lived through the tragic death of her husband who fell from scaffolding painting the interior of the Paramount Theater in Denver, and the suicide of her son-in-law by a self-inflicted gunshot to the head while she was watching his daughter in the kitchen of the same house. She lived through the Spanish Flu Pandemic, and the Great Depression, which is when those tragedies both happened. Maybe she knew the value of rest, in addition to having a lower body burden of things like formaldehyde and plasticizers. A lot of people don’t seem to understand that these days. They don’t see how their approaches miss the forest for the trees. When I have had lower chemical exposure and less stress in my life, my digestive and neurological issues are greatly reduced. This is why, in the past, gardening and even exercise could be counterproductive to my healing. I think people don’t get enough rest, fresh air, or joy in their lives. For some people, this is legitimately gardening, though!
While I had a major failure in one garden bed because one of the irrigation hoses came undone and so the bell pepper seedlings all died, our tomato, cucumber, scallion, leek, tarragon and carrot harvest was the best I have been able to achieve. I did have to make an emergency cover out of the insulated bags I got from the grocery deliveries for the tomatoes when the cold snap hit in mid September, and it worked quite well to allow ripening. I was a little late transplanting the tomatoes, so they are not as ripe as they might otherwise be, but Bert devised a system with paper grocery bags that keeps a fresh stream of ripe tomatoes coming through our house weekly. They don’t taste that much different than store bought tomatoes, but we are enjoying them and I have purchased some heirloom seeds for next year.
I am now more interested in becoming part of the seed bank system and seeing what I can get to grow on our little parcel of earth. I am interested in studying permaculture on my own land, and am going to maintain my status on the State of Colorado Pesticide Sensitive Registry. I am still not sure how careful I have to be about my sun exposure, or if I will have to be more careful as I age. In hindsight, I remember quite a few times when I had been plein air painting or we had been hiking with friends, which knocked me out for a couple days. I specifically remember a time when I painted up at Pingree Park during a paintout for water conservation, and feeling like I had heat exhaustion the next few days. It felt a little bit like having the flu, and I could have trouble with sleepiness, which I now know are non-cutaneous manifestations of certain porphyrias. I also get swelling and hives when I am in the sun too long. I have a lot (~12%) of Native American DNA owing to my grandfather being Chicano, and I think that must have protected me from many EPP reactions in my youth. Or maybe I just had them and was forced to suck it up because the adult world had to go on. I did get itchy outside a lot, which we thought was allergies. I didn't learn about the EPP until last year when I decided to go spelunking in my DNA with Promethease again, and discovered my mother had two copies which explained a cutaneous reaction she was having from gelatin due to its high glycine content. Glycine is the parent molecule for heme, and so an increase in glycine leads to more unformed and toxic porphyrin intermediates, which could cause itching in a person with EPP. When I learned this, I discontinued using gelatin. I am using it again, but more moderately. In any case, melanin is known to protect people with EPP from reactions and last I looked, the FDA was exploring its use as a treatment for the disease. Unfortunately, one of the effects of aging is making less melanin. That’s why hair turns grey - and in the last few years I have gotten a lot of grey hair.
I think it is possible that my sun reactions may have been made worse due to the environmental poisoning because VOCs can have important effects on the production of heme through interaction with cytochrome P450 in mitochondria in anyone. Having a gene for porphyria just means the volume gets turned up. Ultraviolet light is the problematic component of the sun for people with EPP, but UV light and fluorescent light are not healthy for anyone. With the mutation I have, people are usually much sicker than I have been. I feel like I have gone up and down with my sun tolerance over the course of my life, so I am wondering if maybe I can increase my tolerance again some day as I recover from the water heater backdrafting. I am having to do a lot of work to replace other things I would get from the sun (Vitamin D and infrared light), and I notice my eyesight changing from not having been outside as much as I used to be.
Currently I have a lot of joint pain and some muscle fatigue, but it is so much better than it was during my last ovulation. Oh, wow, I just realized that February and August I always had an anovulatory cycle which would make it so I would ovulate with the full moon from September to January, and with the new moon from February through August. It is like clockwork. I wonder if those anovulatory cycles were due to the water heater backdrafting, and if I will have a normal cycle next February. I also wonder if this is why I would have trouble during harvest season.
To heal and manage my pain and symptoms from both porphyria and the CF, I have been taking some unconventional approaches. I have been using a combination of these things over the course of my life. Because I am prone to mucous (cystic fibrosis was originally called mucoviscoidosis because of the thick mucous secretions which can make breathing difficult), I take guafenesin. This actually can help my breathing a great deal. I don’t know if guafenesin is contraindicated in porphyria, but I have had life-threatening reactions to ibuprofen as an adult and benadryl as a child. This was quite difficult to communicate to Bert when I put all these pieces together, but he gets it now. I was writing with a woman from his networking group who has a graduate degree in Biochemistry and is also a nurse, and she acknowledged that I am likely extremely genetically rare, and also a sort of “early warning system” for the environment.
Because of this, the approaches I have to take with my healing are extremely gentle. I use aspirin, CBD and cannabis for pain. I have been trying to find something other than cannabis flower for the pain, because there is a pronounced difference in my breathing when I vape or dab instead of using a bong. The cannabis helps with the CF quite a bit; it has been postulated that CF patients are deficient in endocannabinoids, and I kind of wonder if this feeds back into my porphyria somehow. I seem to do a lot better with it than without it, and I know a lot of other people who would also say that. I take Vitamin K2, and that was an important part of treating my childrens’ hypersensitivity to salicylates when they were younger. It turns out I have multiple polymorphysisms in the VKORC and GGX genes which are important for turning the plant form of Vitamin K (K1) into Vitamin K2 which is important for clotting. I had a lot of bloody noses as a child, and naturally turned away from high salicylate foods. When I am deficient in K2, I can bruise easily. I have to avoid using Saigon cinnamon because it makes my head feel funny, and it contains coumarin, which is an analog of coumadin, which is a blood thinner that blocks VKORC. Instead I have to use Ceylon cinnamon. If I eat too many high salicylate foods (like a lot of curries, which I love), my head can feel funny. This is one important reason I cannot be a vegan, and the others have to do with B-vitamins. Bert has a polymorphism in several genes important for the conversion of beta carotene to vitamin A such that he needs the animal form of vitamin A. Being vegan could easily cause him to go blind.
The sauna or a chicken light does miracles for my mood, and I often use them, or when my bathtub was working, a hot bath in epsom salts, to get infrared energy, which greatly assists my prana, which is the Indian way of describing life force. The Chinese call it chi. I actually have a scientific way to measure the effects of these interventions, and that is through taking basal body temperature. I have a "pseudoscientific" way of measuring it, too, which is through mindfulness. This is the easiest way to measure it; just slowing down and paying attention to how I feel. Sure signs that it is low is a feeling of anxiety, techiness, or cold extremities. I suppose you could say I turn frigid. Most people who know me outside of my home probably don't think I am the frigid sort, or anxious, because I tend to stay home when I feel this way. I always felt it was best for everyone that I do that maybe because I never received mercy or understanding when I was feeling this way. I wonder if other women do. When I was young, anytime a woman was unhappy, it was always chalked up to a woman "being on the rag" which was rather cruel. I think this made woman feel unnecessary shame around menstruation and overcompensate, rather than learning how to be honest about needing rest. We all need rest from time to time, and some women may need more. In a fair world, this wouldn't be a shameful thing. I feel like it would help society and the earth a lot.
I do also have to make sure I get enough sugar and protein and not too much fat because ketosis is bad news for me. This is yet another reason I cannot be vegan. I have to eat things that are easy on my digestion because with the CF it is easy for me to have reflux (that is the most common symptom in carriers) and I have had symptoms of gastroparesis around ovulation and the end of my cycle. I take a lot of magnesium and charcoal to manage my digestive symptoms. The porphyrins are removed in bile and can cause me to have digestive problems, which I can quell by eating ginger, carrots or charcoal. Ginger is good for nausea because it blocks serotonin receptors in the gut. The fiber in carrots is naturally antibiotic, so carrots can be good for dysbiosis. Charcoal helps bind toxins (some pilots never leave without it). The lower digestive issues could be from CF, too, so sometimes I take over the counter enzymes. I do not think these are the same enzymes given to CF patients. The magnesium helps a lot when I am feeling constipated, or anxious, or having trouble sleeping. Calcium helps, too, but I don’t generally take it in the commonly prepared antacid forms because they contain talc or silicates which are known to be both carcinogenic and an important trigger of autoimmune disease. For these same reasons, I am very careful about what dry shampoo I use.
When I have a respiratory illness, loratadine becomes a necessity because I can have some pretty intense histamine reactions. When I was a kid I had some “mystery allergies” and a prescription for hydroxyzine HCl, which is similar to ranitidine. Ranitidine is too expensive, though. Sort of related, I had an acute attack in college which involved serious depression and reflux, probably after my room was sprayed with pesticides, and the clinic recommended I take cimetidine, which is an antihistamine, but is used for heartburn relief. It had the strange effect of completely reversing my depression, which I still remember to this day. Last summer I learned that cimetidine is a known treatment for a type of porphyria that is responsive to supplementation with vitamin B6, but was not tested by 23andMe or AncestryDNA when I was tested. The coenzymated form of B6, P5P, has been extremely important in my wellness.
I have thought about asking for a few things from my doctor that could greatly aid my ability to recover from exposures and hormonal cycling. The first thing I would ask for is an ondansetron prescription, because I can get pretty terrible nausea that impacts my willingness to eat at the end of my cycle, and can make my porphyria and digestive symptoms worse. Sometimes the ginger and charcoal aren't enough. The other thing I am pretty sure I need, even though my first porphyrin test came back negative, is a standing prescription for synthetic hematin in case I ever have a significant seizure or loss of consciousness. There have been times I have been overtaken by sleep, almost like I had narcolepsy. I can always get myself somewhere safe, but if I am somewhere safe already, I typically cannot fight the sleep. It is like when I am slightly tired and smoke a lot of indica, except I awaken groggy and disoriented. Often my body feels strange like I ran a marathon. I think these may have been seizures, and I have had them off and on my whole life. I had this feeling daily when we lived in our new house from 2002-2006, and when I visited my in-laws in Florida in their newly remodeled home. During that trip, I developed terrible back pain, which I thought was from sleeping on a blow-up mattress, and also my hair ended up all over the bathroom, which had been a daily occurrence in our new home. I now realize that the majority of my adult history with more persistent back pain has been related to chronic chemical exposures to construction chemicals. I only connected them conclusively to chemical exposure in the last year through use of my VOC meters. I'm not sure the hematin will help; I just want to know that porphyria will be considered in my diagnosis, because if it is not, I could easily die from improper treatment. I used glucose or dextrose and electrolytes when I was experiencing an acute panic reaction from the water heater backdrafting, and those were very effective for the tachycardia which had been going on the better part of a day until I thought to take them, but I was still left struggling with energy for a long time afterward. I have been wondering if hematin could get me back on my feet sooner, but for now I see no harm in just slowing down.
I take more of other B-vitamins, too. I take niacinamide which helps a lot when I get brain fog. I think this is because of the way it helps with electron transport during ketosis. The brain fog usually sets in quite some time after I have eaten. I take a coenzymated B-complex because I have polymoprphisms in a couple different genes related to B-vitamin metabolism which have important disease manifestations that run on my father’s side of the family, specifically gout. I am prone to gout, and for a while I thought pseudogout, but now I am wondering if that was porphyria. It’s hard to know what causes what because it’s all connected and all worsened by stress, hormones, polyunsaturated fats, and chemicals.
I feel like it is important for me to underscore how significant the impact of the chemicals, specifically, were on our health. They impacted our sleep, memory, mood, consciousness, digestion and respiratory health significantly, and my husband and I do not share genetic risks. There were times when I wanted to give up, but figuring out that the version of me who wanted to give up was having a reaction to chemicals and stress put a lot of power back in my hands, and made life worth living again. I truly have a great life to have the freedom to sort all this stuff out!
Despite the intense focus I have had to keep on my health, many wonderful things have happened here. I was a musician growing up, and I didn’t realize how important that was for my mental health. I mean, I’ve said the words, but sometimes when I say things, I don’t really get the significance. I was introduced to some of the healing properties of music through my experiences with energy work, but it has become clear to me that playing music can be even more healing than just listening. Most of his life, Bert didn’t have good fine motor control of his pinky or ring fingers on either of his hands, but he has now gained better control over them through learning to play the guitar. Early in the pandemic, I started singing again. It has been interesting to see how my lung capacity has grown, despite using cannabis, the dangerous levels of particulate we had from the wildfire smoke, and the water heater backdrafting. I don’t remember to practice my flute often, but when I do, I am surprised at how my ability to accomplish longer phrasing grows each session. I am preferring this approach to more simple forms of breathwork, because in the past I had to spend so much time in silence, and it can be deafening. My ability to communicate is so much better than it was a year ago, and I have been able to use my left hand better than ever before. There is clearly great healing going on here, nothing short of miraculous. I have done it before; I can do it again.
Both of the kids have learned to play new instruments, and Henry is sounding things out on the piano. We have all taken an interest in ceramics. I find this all so interesting because my mother was a potter and my Dad was a musician, and having these influences around me is helping my home feel more like a home to me. We are all getting back to the best parts of my roots. Henry was playing some very introductory piano the other day while I was making dinner, and I remembered myself doing the same thing when my mom would cook dinner. He was using one of my old piano primers, and he would get caught up on the very same notes I did when I was learning. I remember feeling bad about messing up as a child, but now being on the other side of the equation, I see it so differently. I see how music imparts a certain lesson about muddling through, persistence and growth that is constantly rewarding when it is given time to happen.
For a long time he wouldn’t play the piano because he couldn’t find his earbuds, and I thought this odd, so I am glad he felt brave enough to do it, finally. I feel like I was encouraged to make music when I was growing up, so I am sad that he was afraid. I don’t know why he would be afraid like that except we often had to ask the kids to be quiet in the evenings for Bert’s meetings since he works from home. Sometimes those can be during the day, too, so maybe that’s why. Also, over the years the boys’ sleeping has been extremely abnormal, so sometimes they might take a nap in the living room in the middle of the day. In recent months, I noticed the night waking to be correlated to problems with air quality and the water heater backdrafting in particular. In fact, I feel pretty confident that awakening groggy has more to do with chemical exposure than anything else. My own sleep has improved greatly since we had it removed, and Henry seems a lot more alert. Bert is in much better spirits and says he feels much better all around.
All of these changes continued to evolve despite having to keep a close eye on our air quality during the wildfires, and taking on a very ambitious 3D printing and soldering project for Lily, which highlighted problems we have with ventilation in our garage, which is our primary space for dealing with hazardous materials used in making. Lily was less aware of the neurological impact of a lot of the things we were using in our projects from when we weren’t taking better precautions. For instance, we have determined we can’t use spray paint in the garage because then it goes into our house, but because of the weather, the spray paint doesn’t necessarily apply properly outside. She didn’t understand that it wasn’t safe to work on her project when it was too smoky or cold outside. I honestly never would have thought to use spray paint in the garage, or without a respirator, but these were important things we had to talk to her about. I am really thankful I had the OSHA training I did in graduate school and in the workplace. I am glad that Bert did, too, and that we both have experience responding to accidents in the workplace in a professional manner. I am pretty sure I have known people who have lost their lives to their hobbies, and I am certain I know many people whose health has been greatly compromised. I, for one, will never be using acrylic paint inside my home again, and I will never again use any sort of mineral spirits in my oil painting.
We used to print exclusively with ABS plastic. It turns out the neurological and carcinogenic effects of styrene are well documented and so we have tried to move to printing with mostly PLA, which is a plant-derived plastic. PLA still has its problems, though. Our air quality meters indicate that we still need to make sure the garage is well ventilated when we print with it, and that the fume extractor and enclosure are insufficient methods to control the plume of VOCs generated when using PLA. For now, Lily’s big project is finished, and I am excited about how much we all learned in the process. Lily learned such things as how to wire a breadboard and program an Arduino from Henry and Bert. It was fun to see them all work together, and how they dealt with their own and each others’ perfectionism during the process. While there were times I thought the project might drive us apart, in the end, it brought us all a lot closer together, and I am glad we took the risk in helping Lily’s dream come true during an otherwise difficult time.
...Continued in A Life of Illusion: Chapter 7: Stairway to Heaven