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For Those Who Don’t Understand

A Note from Doug: In addition to being the father of an allergy survivor, I myself am an allergy survivor. I speak from both perspectives here.

I thought about titling this “To those who don’t understand.” But I could hear a separateness in the“To” which isn’t there in the “For.” So much separates us in the general food allergy conversation. Seeking to be understood consumes a great deal of energy for the allergy survivor. But we also invest a lot of time seeking to understand how and why non-allergy friends, family and community “don’t get it.”

As we move step by step along this road to being safe with food, our vulnerabilities become our core competencies. Our life-threatening allergy to food can be the first time that we feel “exiled.” We suddenly find ourselves living away from something that is native to us. But just as we admit our vulnerability, we take the first step toward a profound experience.  We begin to move from exile to belonging.

I know I am writing from a deeper and wider place than an allergy kid could express, but this is in fact the truth about what is occurring. Understanding the impact of a food allergy starts close in. It takes time to really internalize the meaning of a shift in eating habits. We feel different and apart yet we have a greater sense of ourselves. Our concern for our safety is in small part instinctual self-preservation and in larger part an inner calling to “be here” and “belong.” We arrive at a place of understanding and self-acceptance. But, what of the world around us? It is easy, especially for young allergy survivors, to assume that everyone “gets it,” like us. The truth is they don’t. It’s not their fault.

We need to take our own responsibility to create and apply a personal ecology of deep attention, well-laid and sharpened tools, care, patience and imagination, all brought together within the mandala of compassion not just for ourselves, but also for the world around us. For our young, we need to stand guard with an alertness and awakeness that doesn’t exhaust us but helps us settle in the certainty that our children are safe, moment-by-moment. Poet David Whyte, teaches that the antidote for exhaustion is not rest, but “wholeheartedness.” To help our children and ourselves focus on “belonging” is to energize our whole life system.

So, here is my wholehearted suggestion for dealing with people who don’t get it.

Feel what you feel in its fullness. Allow for a single space, breath, moment of not speaking, between the feelings of frustration and anger. Shift the focus of attention away from those who don’t understand—to the child who needs to be loved and cared for. The child’s sense of being loved and of being safe is almost always linked to the parents’ spaciousness and freedom. Especially the freedom of the moment.

If a nut is present, simply move the child away. Make a dangerous near thing an away thing. Focus on distancing. Not necessarily as separation but rather as a return to belonging. Bring the child away and home to themselves. Do the same for yourself. Use right speech. Anything you say in the moment of frustration and anger will threaten your freedom. I say to Lily, “be the wakeful heart that keeps you safe.  If you are the wakeful heart, you will be safe and your life will meet you the rest of way.”

Doug Pinto, Co-Founder

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