I recently wrote a post called “To the Person Who Thinks This Illness is in my Head.” I wanted to make it very clear that I am experiencing a physical medical phenomenon and to crush any suggestion that I am somehow manifesting this nightmare experience out of some fucked up Munchausen Syndrome desire to be sick. That is, unfortunately, a ready conclusion for people who have never heard of this illness. (Trust me, you will hear more about it. Do you remember when you first heard about Lyme disease?)
But in addressing the topic, I artificially honored the framework wherein mind is separate from body and assiduously avoided discussing what impact this illness has had on my mental health. Someone rightly commented on this on my blog. I am happy to talk about my mental health now. CIRS brought me to the edge of sanity. I got trained and licensed as a mental health clinician right before I got so sick I nearly lost my mind.
I am lucky. I don’t have a history of depression in my life or in my family. That is to say that the times in my life when I had previously experienced depression, it was tightly linked to some aspect of my life going to shit. It was circumstantial depression that evaporated when my life went in a better direction. I think that is happening again now.
There are different conceptual frameworks used to understand mental health around the world. Here in the west, we often see mental health challenges as brain-chemical imbalances that can be corrected with medication. In Asia and in many indigenous cultures throughout the world, there is a different conceptualization. Rather than isolating the brain from the rest of the body, they see a “body-mind” that has become imbalanced. In this view, behavioral differences are in the same category as physical symptoms.
A person might experience back pain, restriction of movement, anxiety and insomnia. They are all connected. What is the usefulness of putting mental symptoms in a separate basket from physical symptoms? There is a movement here in the US called Functional Medicine. It also takes this view of a connected body-mind and places all physical and behavioral symptoms into the same basket to understand the underlying issues. More on that later.
My body was truly ravaged by something horrible and was not functioning properly. There were several times in the course of recovery that I came very, very close to not being able to take care of myself. This is utterly terrifying for someone who reacts horrifically to molds and chemicals that other people cannot feel. Where is safe? If I become incapacitated, where do I go? The hospital? God, no. The swirling soup of super-microbes would take me down swiftly. I stayed at several friends’ houses that were a step better than where I had been previously, but were not safe enough for me to heal.
I had to have agency to figure this out for myself, because I was the only one who could feel what was making my body go haywire. The result of this predicament was that I had to keep moving. I moved a dozen times in 2016, all while I was really ill. I had to keep finding a different place to live that was slightly better than the last place, or I would slide downward into this quicksand of lack of agency. It was quite terrifying.
It was also crazy-making. Have you ever had someone wake you up every time you fell asleep? Just as you were drifting off, feeling safe and comfortable, something would jolt you awake? How many times could you endure that? How many nights in a row could you endure that before you lost your fucking mind?
Because the “adversary” in this scenario is a set of living organisms that GROWS and therefore changes day by day, how would you set about fighting them when you cannot see or smell or hear or taste or touch them? Yes, it is very much like being dropped into the middle of a horror film. The enemy is covering every surface of anything that might otherwise have given you comfort.
You know those days when you are at your wits end or are depressed and just want to stay in bed all day? What happens when your bed becomes your enemy? Where do you go then? Your mom’s house? What if that makes you sick? Your lover’s arms? Nope. What if you wheel around in a 360 degree circle and find nothing that you can take refuge in and look into your perceivable future and see no prospect of ever finding refuge?
Think you could stay sane?
For how long?
I can tell you that there were times when I was not sane. Perhaps you might understand why people decide they don’t want to be alive anymore if this seems like their life from now on.
I survived this nightmare, in part, because I turned into an animal. I lost my higher faculties. My body-mind was inflammed and imbalanced and unable to access my sense of spiritual connection or any subtle mental discernment. I fell apart over and over and over. But I found that I had this tenacious, animalistic drive towards survival.
I can’t even catelogue how many days and weeks were defined by “You have GOT to fucking be kidding me” kinds of challenges. I am this sick and exhausted and strung out and I have to remove everything from my basement and have a yardsale? Really? I am reacting badly to my car and I have to take a 3 hour round trip in it while wearing a ventilator to look at a new car? It takes me days to recover and I have to do that THREE TIMES? I have no functioning immune system and I have to go out into the world by myself where there are microbes and super-toxins worse than what I’m dealing with? Really?
No matter what other tasks I had to accomplish, I always also had to figure out where I could sleep that night. I had to wash bedding and change locations almost daily in order to simply be able to sleep a few hours and not be in pain. Everyday I tried to inch myself forward towards greater health but many of those days required that I get sicker in order to get closer to the goal. I had to go through Herculean efforts to rent out my house and aquire a new car and all new belongings and to miniturize my life so that I could focus on only taking care of myself in an arid climate where I could still live outside.
Merge Waiting for Godot with the movie Brazil, add in The Birds and you’re getting there.
Yes, this illness was in my head. It would be in yours too.
I got deeply, deeply depressed. I lost my home, then my boyfriend, then I lost my job. Then my son said he didn’t want to stay with me anymore. (I didn’t blame him. I was awful to be around.) I got extremely isolated. My reality ripped into pieces.
When I finally achieved my goal of getting to New Mexico in a car I could camp in, I found that I was reacting to outside mold for the first time. (You have GOT to be fucking kidding me.) I didn’t know that happened. I wandered around New Mexico literally terrified of everything, all the time. I was afraid of touching the gas pump. Afraid of going into stores and buying new things and putting them into my car, where I slept. I knew there were super-toxins that could ruin my life for months if I touched them, eradicating months of my hard-won progress.
I was afraid of people because they were moldy and full of microbes, so I sought isolated campgrounds. Then I was afraid of single men, traveling alone in their campers. I got to a wilderness area where there had been a bear attack at a campground several years ago and a mountain lion sighting several weeks ago. More fear.
The point I want to make with all this is that anyone with a body-mind that has a predisposition to depression or anxiety or psychosis, IT WILL SHOW UP. No human being can go through this kind of physical shitstorm combined with mental pressure and come out OK.
To isolate one from the other isn’t helpful.
What is helpful is knowing the elements that are necessary to heal– sleep, nutrition, clean water and air, time, rest, emotional support, medication– heal both the body and mind at the same time, because the are the same thing.
The stigma that is attached to mental imbalances are unhelpful and shitty.
No matter where you go throughout the world, there is a relatively constant percentage of any population with schizophrenia. It’s about 1%. That is true through history too. I read a paper once that compared how the we in the US treat schizophrenia versus how a tribe in India and another tribe in Africa treat it. What I remember most about this study is that the voices that the people with schizophrenia heard were benevolent in India and Africa and malevolent here in the US. The researchers speculated that it was because the people in India and Africa were treated with dignity, trained as shamans and embraced as useful members of their respective communities.
In contrast, here the people who heard voices were stigmatized, medicated, isolated and idle.
After what we have been through, people with CIRS deserve to be treated with dignity. If we are depressed or anxious, we deserve to be treated with dignity. If we are psychotic, we deserve to be treated with dignity. If we are traumatized by this experience or any previous experience, we deserve to be treated with dignity.
Dignity is as crucial for healing as sleep, nutrition, clean water and air, time, rest, emotional support and medication.
With all of these factors, we can heal. Our body-minds can be restored and we can again be embraced as useful members of our communities.
(Metaphorically embraced. Don’t actually hug us. LMAO!)
PS– It is worthwhile to learn more about Functional Medicine if you are dealing with this or any other chronic illness or mental illness.