Bright Spots
It’s easy to come up with a list of sacrifices and challenges that accompany living with severe food allergies. The ability to easily prepare a meal. The reckless abandon of leaving the kitchen for a quick dinner out. The fear of exposure. The trauma of reaction.
But what I want to address for a minute are the “bright spots.” My husband and I brought that term into daily use when we suffered a series of tragedies, culminating with the death of his parents and grandmother in a car accident in 2010. When nothing felt like it would be okay ever again, suddenly there would be an unexpected bright spot. A peace lily would arrive on the front porch. A friend would show up with a favorite meal to do nothing more than be there in the midst of the sadness. The sun would reflect brightly from the playground slide, reminding us of the joys that were still left, mirrored in the eyes of our little ones who continue to bear strong resemblance to those we lost.
Candice can attest to the same thing. Over the last few weeks, she’s been a bright spot herself to so many by helping track down supplies for families in North Carolina impacted by Hurricane Helene. When it felt hopeless among the destroyed towns she knew intimately, a generous company (thank you Wilderness Mountain!) returned her call with the offer of an enormous donation of cans of spring water. And then they followed up with an offer to fill a tanker truck to deliver to people in desperate need of drinking water. When the need is there, good people fill it, and bright spots grow exponentially.
Nearly ten years after the tragic loss of our family members, the grief of my AGS diagnosis shook me to the core once again, accompanied by a legitimate fear of hunger, fear of being unwell, fear of danger, and honestly, the fear of death. But since then, the bright spots manage to shine through, even in the darkest of times. And it was a moment just recently, as we were humbly asking for support for the Alpha-gal Allergen Inclusion Act, that the sun glowed brighter than ever upon receipt of an incredibly vulnerable, touching letter of endorsement.
The support has come without hesitation from the food-allergy and tick-borne communities. Individuals, many with a difficult or tragic history, offer their stories to reinforce the work we’re doing to make the world safer for those living with alpha-gal. Heartbreaking stories of those who they lost. Words of encouragement that these earth-shaking, seemingly-impossible hurdles can actually be overcome with the support of a network of loving, dedicated, and motivated individuals.
We use these words and these stories now to drive forward our mission to move from survival to reinvention, resilience, and joy, but also, with the launch of the Alpha-gal Foundation, to engage, educate, and empower. We use them to remind ourselves that our mission is bigger than ourselves. We use them to change the world because we can. Together.
We’ve launched our new nonprofit to broaden our reach so we can help more people by engaging communities and decision makers in conversations around alpha-gal issues and priorities. We plan to educate, not just those living with AGS and the public, but also the healthcare community where there is a critical lack of awareness. And we hope to continue the work we started at Two Alpha Gals to empower those impacted by AGS to navigate life with confidence and joy, ever seeking the bright spots that are sometimes hidden but still there.
But we couldn’t do it without you. With all the love for the many who are supporting us along the way, here and passed, we thank you. And we look forward to being a bright spot in your journey wherever you are.
Join us on our new adventure at the Alpha-gal Foundation!