A note to the reader: The following is addressed to someone who has a bad case of EHS. If that’s not you, I invite you to sit in on this “conversation,” to serve as witness to what this malady can be like.
Electromagnetic fields are everywhere—be they low frequency electric and magnetic fields (from everything plugged into your wall sockets and the wiring about your house) or high frequency radiowaves (from wifi systems, cordless phones, cell phones, cell-towers, etc.). Realizing you are seriously sensitive to something so pervasive is to discover—suddenly and ominously—that your entire world is unsafe.
The risk of overwhelm is huge.
An underworld journey, to be sure.
The Underworld Realm
In the shadowland of this journey reside two dark and difficult emotions: fear and shame. Building the foundation of a new life is like the classic three-legged stool. One leg is education—so much to learn. A second is shielding and avoidance—to create a sanctuary in the world. The third is learning to transform fear and shame from serious adversaries into welcome allies. No small task, any of these.
Fear: Any serious threat naturally prompts a fear response; this is essential to both the survival of a species and the living of an individual life. As most everyone knows, a fear response usually takes one of three forms: fight, flight, or freeze.
Faced with real and present danger, each person usually has a go-to fear response—be it fight, flight or freeze. For most of my adult life, when threatened I was one who usually fought back. During the worst of the EHS underworld journey, however, I was too overwhelmed, too brain damaged, to do anything but struggle for mere survival. Any other outside battles were impossible to take on. Instead my go-to response changed from fight to flight: retreating, avoiding, isolating. You, too, will have your own ways of coping with threat—both before and after getting ill. Ask yourself: “Which are mine?” Working to transform your own fear response starts with this basic insight.
Most any kind of fear response may be reasonable and appropriate during a single attack. But a constant state of threat, like with EHS, may distort and perpetuate any of these into a chronic, disabling state. In my case, EMF avoidance was a healthy part of a flight response (and still remains an essential component of my self-care), but in the first year or two, this fleeing often degenerated into excessive retreating and isolating, which led to boredom, disconnection, and a terrible feeling that my life was imploding.
How then to transform fear, in any form, so it becomes an ally?
Healthy fear is about self-protection. Am I safe? What do I need to do to protect myself? What plan might I have in place in advance in case I am threatened? These kinds of questions lie at the heart of a healthy fight, flight, or freeze response: one that will support healing rather than undermining it.
For me, learning to access these healthier versions of a fear response took several years. First came lots of self-education, and then lots of self-protecting interventions—the other two legs of the stool. Only when I had reestablished some amount of safety—a feeling of sanctuary—did I begin transforming fear into an ally. Fear stopped turning into anxiety, even panic, instead becoming all about having a plan, being mindful, and taking self-protective action.
This can happen for you, too. But again, it will take time. Be kind to yourself. Be patient.
Shame: Feeling ashamed can be very unpleasant, even crippling. In the early years of EHS, I could easily imagine how fear might one day become an ally, but shame seemed to have no redeeming value.
Shame certainly serves an important role in a social setting, prompting someone to “feel the burn” of how he may have hurt someone else. Appropriate shame and remorse can make someone a better partner, a better friend, a better citizen. But what about the person who feels ashamed for something that wasn’t their fault? Is there any redeeming value to shame when a person has a serious chronic illness or sensitivity that leaves them disabled, disfigured, or unable to interact in a normal manner? A simple answer may be “no, there’s nothing redeeming about it—whatsoever.”
Shame, at its worst, can undermine self-protection. In the first few years of having EHS, the fear I had about what others might think often overwhelmed a more appropriate fear of physical harm. Instead of protecting myself, I would pretend I had no sensitivity, saying nothing and/or doing nothing. Repeatedly I suffered exposures and further harm to my brain and body, all in the name of “looking good.”
Why did I let this happen?
Shame begins inside, with our own preconceptions about what it means to look good, to fit in, to be accepted. Consider all the ways I no longer measured up. I was brain-impaired. I was at serious risk of losing my job. I had an illness that most knew nothing about. I had to take strange precautions to protect myself. I had to isolate so much that I could no longer carry on superficial banter about the latest movies, parties, and community events. I could go on. Each and every one of these “failings” was an assault on my own self-image, regardless of what others might have thought or said about me.
Ah, but what are others thinking and saying?!Here’s where shame, like a nasty worm, burrows deep into the psyche.
Those of us with a chronic illness or sensitvity may prompt compassion in some, but many others will feel uncomfortable, especially when a health issue like EHS is not well known. Common responses from reasonably healthy people—all designed to create emotional distance between them and someone who is ill—may include:
In the early days, the worm of shame had eaten its way so deeply inside me that it was more important to avoid one of these responses from others than it was to protect myself.
A psychiatrist-friend offered me an insight that helped to change all of this. With deep healing, she suggested, shame can be turned into humility. Shame is a dark tangle of vanity, blame, embarrassment and self-criticism. Humility isn’t about any of these. Humility is a blend of understanding, self-compassion, self-respect and dignity.
How can this moment of shame be an opportunity for humility? I began asking myself. This practice of inviting in humility slowly, over many months, helped me untangled the internal mess of shame. In time, I was able to say (to myself, if not out loud to others): This is who I am? No shame, no blame. Take me as I am.
In Need of Sanctuary:Talking about transforming these difficult emotions, fear and shame, may be getting ahead of ourselves here. If you’re still stuck in the underworld, you may have every reason to be afraid, to feel ashamed. If you are still struggling in the dark, perhaps it’s enough to name them for what they are, while you keep learning about how you can best protect yourself.
Once you have found some degree of sanctuary, then the transformation of fear and shame becomes possible. But not until then.
I remember vividly the very month – January 2014 – when I first knew, when I first spoke aloud to friends, that the light of the world was again streaming in. Before that could happen, though, I first had to learn a great deal about EHS and about how I might create a sanctuary in the world. Not coincidentally, my return into the light of day came two months after I had turned my bedroom/study into a Faraday cage with extremely low levels of all electromagnetic radiation, and a few weeks after I had managed to go 17 straight days without a major exposure. Once all that had happened, my brain cells started healing and the quality of my life began improving—and that’s when the light started streaming in.
The next steps in this journey of healing involved two other core emotions—first gratitude and, odd as it sounds, anger—with a revisiting of fear and shame in between.
Gratitude: Soon after that threshold crossing, back into the light of day, I came across a book by Angeles Arrien, Living in Gratitude, in which she describes four portals of gratitude: four different ways that we can be thankful for what life brings.
These four portals, I have come to see, are where the light comes streaming into my life—into any life, really. Letting in this light—noticing it, allowing it to land, feeling its warmth—has become a regular practice. Sure, I often forget, but the more conscious I am of these four portals, the brighter my life becomes.
Fear and Shame Revisited: Once you’ve managed to find or create a home sanctuary, once your brain has begun to heal, and once you have reasons to feel grateful, then it becomes possible to more deeply transform the fear and shame within. How can fear become being mindful and having a plan for self-protection? How can shame turn into humility?
Now, years into this unfolding story, I seldom let fear or shame be the disabling, distorting driver of my thoughts and actions. Sure, I feel twinges of either—sometimes disturbingly so. But again, I ask myself: How can this fear help make me safe? How can this shame be an opportunity for humility? By turning fear into mindfulness, shame into humility, I have slowly reclaimed my sense of dignity.
May the same happen for you.
Anger: Seems odd to be ending this exploration of healing emotions with anger. And yet, getting back a capacity to fight—not always fleeing or freezing—has been so important in taking my place back in the world. As I said earlier, I lost my fight during the early days of having EHS. The only exceptions were a few times I lashed out like a caged animal when people violated my sanctuary space, but each of those was more panic reaction than healthy self-assertion.
Finding a healthier anger response has been a bit of a revelation. It’s like an old friend has returned—someone I once knew well, but have since forgotten. With access to a healthy version of anger, I again have the capacity to say to another (in an even-keeled way): “No—no thank you.” Or: “No—please don’t do that.” This kind of well-channeled anger can be a source of personal power: essential for setting boundaries, for righting an injustice, for helping to transform a difficult situation.
And then there are times that you just GET ANGRY!
Back in my early 30s I was traveling in Europe when I found myself at a dinner table with an American businessman decades older than me. I remember almost nothing from that encounter save for his one great wisdom, passed on from age to youth. “In any important setting,” he told me, “it’s important to get angry about once a year—not more, not less. Get angry too often, you turn people off and they avoid you. Never get angry and you risk being dismissed, ignored, or run over.”
The older I get, the more I wonder if the open expression of anger is ever necessary. I think it is possible to display personal power—to be seen, respected, and not dismissed—without even a yearly outburst. But I’m still finding my way with anger, my old friend, learning again how to be in relationship with it and its special powers. In the meantime, I’m stepping out into the world more and more: finding my place, learning to set boundaries, learning again how to be seen and respected. If I have an outburst every now and then . . . well, so be it. Finding my way back into the world is too important to keep quiet.
Here’s hoping the outbursts don’t come too often. Hmm, let’s see . . . no more than once a year.