Illness and caregiving can lay traps for us. One trap is powerlessness. Caregivers feel helpless as they watch their loved one drown in a sickness. People who are coping with debilitating and life threatening illness feel helpless in the face of body changes. Often, it seems pointless to put these experiences into words. Why try if you are not understood?
When struggling with illness, it may feel as though you are on an interminable conveyor belt of medical appointments, medical procedures, follow-up care and new medications. Managing multiple referrals and conditions, meeting new face after new face in your healthcare system, and chronic uncertainty can lead to a constant state of stress and tension. Life is lived between periods of interruption – dropping work to go to the hospital, dropping school to learn to manage a condition. Then, there is the waiting. For a diagnosis. For a plausible care plan. This is a recipe for helplessness. How do we feel empowered in the waiting? How do we cope with the unknown?
Human organisms (because at the end of the day, organisms are what we are) have an adaptive level of arousal. Our level of arousal is governed by our autonomic nervous system. This part of the body essentially has two sides: the sympathetic nervous system (SNS) and the parasympathetic nervous system (PNS). The sympathetic nervous system is responsible for our fight or flight response. When our bodies are in fight or flight, we are in a high arousal state. We see ourselves become agitated, energetic, and restless. We want to move. Alternatively, when our PNS is activated, we are relaxed. This is our “rest and digest” system. When we are relaxed, our bodies are less tense, and we feel calm and safe.
Each of these systems in the body balances the other. Typically, we can move back and forth between them, and the two sides “talk” to one another to keep us in a flexible, responsive state. We are in the zone; we can respond to stressors in our environment without being overwhelmed by them. This zone has been variously termed by clinicians and researchers as the “window of tolerance,” the “river of integration,” “homeostasis,” or the “growth zone.” In this adaptive arousal state, humans are stimulated enough not to be bored, and not so much that they are overwhelmed.
The concept of the growth zone is one way of understanding how humans respond to distress. When we are deeply stressed, fearful, sick, or anxious, we are outside of our growth zone. A natural reaction is to reach for control, because our ancient brains strive endlessly for balance. When we feel unsafe, we crave predictability – we want to know where our next meal is coming from, we want shelter, we want kinship and belonging. We want and need more rest and comfort. We effort to come back into balance.
And yet, there can also be times when we feel too safe. When in the midst of distress and overwhelm, it is possible to forget this. Have you ever confused safety with boredom? If so, you are not alone. At a certain point, when we are in safety, we begin to wonder and get curious. When we feel safe, our exploratory drive has the chance to kick in. This drive is what motivates us to investigate our environment, and when it is active we are better able to sustain ourselves through risks or begin to change behaviors. We want to see what is over that hill, up that mountain – what adventures and wonders await us. Just as our fear response plays an evolutionary role in self-preservation, so does this exploratory drive. This drive has helped humans find new resources and survive in new environments. It has motivated and empowered us to circumnavigate the globe.
After a difficult or traumatic experience, our ability to regulate different sides of our nervous system becomes impaired. When an acute stressor is present, it may feel as though we have tipped into chaos – as though our bodies and minds are not our own. We feel overwhelmed, we shut down; we have trouble making decisions or taking action. Essentially, we become dysregulated, meaning our physiology oscillates between periods of hyperarousal (e.g. intense anxiety or anger) and hypoarousal (e.g. sluggishness or depression). Our body is trying to find balance, but until intensely stressful, traumatic events are understood and integrated, balance is not possible. In order to reclaim our own power and agency, we need to learn how to come back into equilibrium. Then, we can begin to explore.
The word equanimity comes from Latin roots meaning “even” and “mind.” This is a core concept in mindfulness work. To illustrate its meaning, let me share a metaphorical story of a man who was injured after stepping on thorns when barefoot. He decided to cover the whole world in leather so that it was comfortable and safe for him to walk in bare feet.
It is a natural impulse to respond to discomfort by creating comfort. However, rather than covering the whole world in leather, or covering none of it and risking our feet, we can learn to wear shoes. When working with intense stressors, the pathway back to our own sense of agency involves finding a middle space between helplessness and over-control – a space that allows us to stay even-keeled. Equanimity moves us away from continuous and ongoing reactivity, into a space of perspective and wisdom. Put another way, finding equanimity is a way of finding healthy empowerment.
At times, when we are scared, angry and grieving, what we are looking for is a pathway back to our own healthy sense of self-efficacy and empowerment. As we begin to regain a sense of safety, we can also hook back into more choice. One pathway from fear and anger back to choice and confidence is through curiosity. By making the choice to become curious about the path that is set before us, we open a doorway to healing.
Sitting in Bars with Cake is a film about two young women - close friends - who navigate the journey of illness and caregiving. Yara Shahidi - Harvard graduate, actress, and producer - stars in it. Below, she makes a case for leading with curiosity in our lives. Take a moment to give it a listen. Then, see if you can take a moment to reconnect to your own curiosity. Inside you there may be a botanist, a belly dancer, a farmer, a dog whisperer, an activist, a chess master - who knows - waiting for a moment to step forward and say, "There is more to you than this."
Let them shine.
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