Life is Beautiful
My name is Beth, and I was diagnosed with PH1 twenty years ago, along with my brothers Steve and Eric. Sadly, we lost Steve in 2003 and Eric in 2017 as the result of the ravages of PH1. I am writing to ask you, along with other patients, caregivers, friends, and loved ones, to join me in the OHF’s “Life Is Beautiful” campaign to celebrate that our lives, and the lives of those we love and care for, are in fact beautiful and joyful despite the fear and pain wrought by primary hyperoxaluria. That is the essence of why we fight— because everyday that our community digs in together and makes progress against this disease, somewhere a life is extended or made fuller— and that is beautiful.
I’m inspired by my brothers, Steve and Eric, who, at end of their lives, found beauty in the world around them and in their family and friends. Steve, a commercial fisherman, took amazing photos of the ocean and shore— capturing its timeless beauty and serenity. Eric had a lifelong passion to study astronomy. He took stunning photos of the moon and stars and volunteered to show others the vast wonders of our universe. Although each struggled with significant physical pain, they showed me that everyday we can find the beauty around us and take comfort and respite in those moments of awe.
I hope you will join me in participating in the Life is Beautiful campaign. Anyone touched by primary hyperoxaluria, including me, is aware of the inherent physical pain, uncertainty, fear, and survivor’s guilt it can bring to our lives. We also experience these challenges during a time of deep division and chaos in the world around us. Still, my brothers were right— no matter what we face— there is beauty in our lives, those we love, and in our communities. It is all around us and should be celebrated and welcomed because it has the power to bring respite, comfort and healing.
I hope you participate and share with us the moments you find beauty and joy as part of this campaign to inspire our community as my brothers have inspired me. Each one of us has a unique perspective on the comforting beauty in our everyday lives. For me, I find beauty in my love of family, the quiet majesty of the New Hampshire mountains, art that brings color and life alive on a canvas, and even in the water-cooler giggles with co-workers at the end of a hard day. I hope to discover what others in the community see and share and be inspired by the images that bring comfort and joy as we face down primary hyperoxaluria.
