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.