Community Heals Isolation
Life-threatening food allergies press against the central nerve of the feeling of “being left behind.” What begins unexpectedly as a moment of terror and panic in an anaphylaxis trauma lives daily as a shadow of impending doom. Safety becomes a priority over taste. The boat leaves the shore. The individual sets sail on a voyage fraught with feelings of isolation.
As a food allergy survivor and father of a child with a life-threatening allergy to peanuts and tree nuts, I know first hand the devastating physical and emotional effects of anaphylaxis. This becomes our story. My story of isolation has opened me to want to connect with others who have felt similar feelings of isolation.
I was reminded of this recently by my friend Gregg Cassin, an AIDS and gay rights activist. Gregg has used his personal AIDS story over the last 30 years to build a living community of people. He believes that the antidote to isolation is community and that community allows people to “belong” to their experience in a way that creates a unique sense of safety in realizing that we are not alone and exiled by our suffering.
Greg helped me appreciate our food allergy community in a deeper way. We help each other know that we are not isolated and are loved by someone, somewhere. There is someone who holds the end of a rope to pull us from hiding into visibility in the world to “just be ourselves.” To never give up.
After last year’s Food Allergy Bloggers Conference, I had a dream of fields of empty cocoons left behind by those who had been exiled and found a way to fly into the sky of their own belonging. That image has stayed with me and each day I take a moment to imagine a “blue sky full of flyers who could not prevent the real in them from taking flight into their own personal freedom.”
Real wellbeing of our person need not be measured against the wholeness of someone else but rather the sense of freedom and spaciousness we feel. The world is stubborn and stupid and beautiful. Raw times compel us to seek shelter and warmth from one another. Who we are with each other can transform who we are with our food allergy.
Community fills the hole of isolation completely, again and again, even as the space recedes and expands. Together, we are alert, brave, strong and enduring.
Father and Co-Founder of Don’t Go Nuts
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