Two people are compatible when what they consider to be “real” overlaps substantially. But of course that mental concept of reality can warp and bend over a lifetime, since it has, itself, only a relative truth to it. Some ideas, like future, can implode on their own with just the lightest breath of a butterfly’s wing.
I thought, twice now, that my mom-group of girlfriends would be friends for life. A divorce or two ended that first illusion and the second group, though more “real,” still blew apart after bigger crises. One of us died. One of us got cataclysmically ill. One moved home to England. The one who was left was never the same. Future isn’t “real.”
It can really hurt when a future you thought you had evaporates. When a loved one dies or gets sick, when a relationship dissolves, it can hurt and hurt and hurt and hurt. Until one morning you realize that it doesn’t hurt when you don’t think about it. And then you realize that it’s actually the thought “This shouldn’t have happened,” that hurts, and when you reverse it and think “This was supposed to happen,” it doesn’t hurt as much. Better yet, when you don’t think anything and instead turn your attention to the smell of sunshine and the shadows of tall grasses waving in the wind, everything is fine.
When one person in a couple comes to the conclusion that the sunshine and the grass experience is more real than the “This shouldn’t happen” experience, it can affect compatibility. Or perhaps they both know that being present is important, but one of them thinks that the disgruntled, fickle, ecstatic roller coaster of mind is a different, but equivalent reality. Mind is a very sneaky trickster that is always vying for that perspective.
How do you ever know anything? People know things “in their bones” to be true. You can’t talk someone out of a knowing like that. That kind of knowing has nothing at all to do with the exchange of ideas. It comes from lived experience, decorated with ideas. You know what a burn feels like and what drinking clean water when you’re really thirsty feels like. You know what sunshine feels like on your skin and the difference between being treated with dignity and with disdain.
Most people trust their knowing and defend it rabidly. But there is a space in between a sensation like thirst or pain and the mental story of why. The story can increase the pain immeasurably. Removing the story can quiet the pain down. It makes sense that a burn hurts more when it is caused by someone who is supposed to love you putting a cigarette out on your skin versus a burn you get protecting your child from fire. Then again, people can have the wrong idea about how they got their burn, but they still have it and need to treat it. Changing your idea won’t make a flesh wound instantaneously heal.
When you asked me, “How do you know it is caused by mold?” I was taken aback. I asked you, “How do you know you have to pee?” and then, “How do you know that peeing will make the sensation go away?” The answer, of course, is years of experience of it being true. “I pee and the sensation goes away.” With mold avoidance, I feel clean, and then I get something problematic on me (presumably mold and/or chemicals) and when I wash it off, my sensations disappear. Over and over and over. Sometimes several times a day for almost 2 years now.
I set about trying to convince you of my experience, talking about my lab tests and very smart doctors and scientists who are experiencing and measuring the same phenomenon. I talked about the thousands of other people who are also healing this way. It occurs to me that if you had stayed to witness the daily details of my decline, it would be as obvious to you as it is to me.
I wish I hadn’t gone down that path. I will know next time. I am deeply uninterested in defending my identity as a person-with-this-illness. I am simply living everyday in the spaces that do not cause my body to go haywire. It’s very simple.
My lived experience was not compelling to you. These facts and scientific evidence were also not compelling to you. Your conclusion was that all illness is ultimately caused by stress. Your body has been so vigorous and strong all your 61 years. You’ve never had a serious illness or a natural disaster puncture the delusion that you are in control. Whenever you had experienced injury or illness during your life, your story that “stress was the cause” always felt true. Likewise, unwinding and “stretching it out” has always seemed to work for you. You confused the lens through which you perceive the world with “Reality” and suggested, ironically, that the lens through which I perceive the world is flawed. Lenses are all inherently flawed and can only ever represent a relative truth. It’s just our meat suits spinning sensations into stories.
Then you mentioned the ACEs study. The Adverse Childhood Experiences study conducted by Kaiser Permanente in the 90s. You pointed out correctly that I have a medium-high ACE score. People who have high ACE scores, as the study found, have higher rates of chronic illnesses like heart disease and diabetes, higher rates of autoimmune disorders, higher levels of addiction and obesity and they die earlier.
I agreed with your thesis that emotions inform the development of disease. It’s not wrong. But how many millions of smart people have been sick for how many combined years with how many brilliant doctors trying everything to help them heal? You may know in your bones that this is a key, but so what? There are 20-30 million people worldwide suffering from ME/CFS alone and telling them all to “de-stress and stretch it out” is no brilliant solution. In fact, it’s arrogant as hell.
We discussed brain-retraining programs. I knew that would be a part of my healing, but I had not gotten stable enough to do one of those programs yet. One of the things I learned in my relationship with you is how to honor you and your process. I learned that you move forward at your own pace, according to your own inner guidance, no matter what my opinion was. Oh the irony.
Unconvinced, you made me promise to keep my mind open to the possibility that it’s NOT really mold that is causing all these problems. You asked me to explain what seemed to you like inconsistencies in my reactivity. Then you pointed to the comment I made to my doctor about getting attention as a kid when I was sick in the hospital. So therefore it can’t be mold that is making me sick?
OK, let’s now talk about YOUR reality. How do you “know” you are meant to work with horses?? Yes, I know, you feel compelled to be near them and you feel so much better once you are with them. But it has come at a steep price financially and socially to keep creatures that don’t remunerate you, that you then have to protect. Perhaps there was some trouble in your childhood that could explain such an irrational urge? And why should I accept your explanation of this state of affairs, when I can create my own and try to compel you to align with it?
Why, indeed, was it so important that you impose your viewpoint on the cause of my illness? What’s it to you if I found something that is finally working for me? Can’t you see how much better I am? It is keeping me from dying. Why quibble? How about you keep your mind open to the possibility that you will eventually realize that I am right about what is happening to my body?
Were you loving me by coaxing me to a conclusion that denied the overwhelming evidence of my lived experience? For those of us who throw it all on the line to isolate mold as a variable in our illness– an exceedingly difficult and expensive thing to achieve– there is no reason to pursue it other than it’s what works. So believe me.
You have recently radically changed your diet to what I had more or less suggested years ago. In addition to feeling amazing and smelling so good, you remarked that it is easier to keep emotionally and mentally more steady as a result of this change (as I had suggested it would.) Hurray!
Whoops, was I just taking credit for your successes based on a story that reinforced my lens? Because if we don’t have some overlap on what we agree is “reality” then I get anxious that perhaps we don’t have a “future” anymore?
Is that what you were doing?
It’s not just that our lenses on reality have diverged. No, it’s more radical than that. It’s that I no longer believe that my lens IS “reality.” And neither is yours.
I struggle to meet you where you are, still grieving the life we “should have had,” still deriving identity from possessions and concerned with things like mortgage payments and “normal” vacations, while I am emerging, blinking and wing-scorched, from the pile of smoldering ash.
While you felt you were “with me” (presumably in spirit, since you sure weren’t actually physically around for this) I was breaking apart like a meteorite entering the atmosphere. My identities as a friend, a social worker, a young, beautiful woman, a mother, a dancer and your partner were popping around me like bubbles on a sunny day. Pop! Pop!!There goes another one! Not real! Sorry!
Each identity showed itself to be a mirage. A temporary hologram based on conditions that changed all at once. I have seen my mind, all human minds, as the projectors of holograms.
So while you were trying, for whatever reason, to convince me that your version of reality was more real than my version of reality, I was trying to say “No! They are both not intrinsically true!”
The only thing that is intrinsically true does not have anything to do with mind. Your mind or my mind. It doesn’t make any difference. This, too, didn’t feel true to you. Uh-oh.
After our heated discussion, I went to bed conflicted. “How can this be that our versions of reality are so different now? How do I reconcile this?”
I crazy-love this man, but I can’t imagine a life where my every self-care decision is scrutinized for legitimacy. But it also dawns on me how deeply this man must love me to have stayed connected, to even consider moving to be near me this winter, when he doesn’t fundamentally believe the premise of how I need to live. I realize how far out on a limb he has come to even be with me here now.
I did not give it to my mind to solve as a problem. I gave it to the deeper truth and in the middle of the night, I received the answer fully cooked, like a rack of lamb emerging miraculously out of a cosmic oven, succulent and perfect.
It came as a deep knowing (yep, I knew it in my bones) and it was accompanied by a silken, glowing sense of peace and rightness. A knowing that needs no story.
We can’t be together anymore.
Since I no longer believe in “future” either, it added, “Right now this is true.”
And then I fell back into a peaceful sleep.
The grief came later.
I am so sorry the mold hit you and made you ill. It is hell. And I thank you for sharing yourself and what happened. Your writing about it all helps me.
Here is a link to a blog about MCS, and a SPECT scan of someone’s brain before and after being assaulted with the chemicals of fragrance inhalation:
A person who is poisoned by chemicals in the environment can not wish, nor will, those effects away. I have heard this likened to telling a paraplegic that s/he could get up out of the wheelchair if s/he tried harder.