My name is Jason Barrett, and I was diagnosed with Erythropoietic Protoporphyria when I was 11 years old.
My story is similar to many others shared by those who live with EPP. I to have become intimately acquainted with the confusion, frustration, social isolation, and pain, as well as the undeserved feelings of guilt, depression, self-doubt, fear, and shame that are so common in the lives of those touched by this rare disorder.
I have carved a good, happy life for myself around the challenges that I face. I have beautiful young children who bring me joy and just accept that Daddy wears a hat. My wife trusts and believes in me, and together we purchased a wonderful home in a lovely neighborhood. I excel at my chosen profession in the electrical field despite the difficulties associated with being a working disabled person. I love cloudy or stormy weather and the twilight hours, and I use such time to enjoy the outdoors as much as I can.
When I had each of my children, I wondered what they would think of me and the difficulties I have faced. Would they know how strong I have had to be, or would they see me as a masked weirdo standing on the shady sidelines? It took a lot of thought, but I eventually decided to write about my experiences and perceptions in the hope that they might see the world through my eyes one day and understand.
Privately locking these things away for only my immediate family to someday read seemed somehow wrong. I remembered the fear I felt as a child as my family and I blundered through ignorance as though I was the first person ever to handle this type of situation. I remembered how lonely and alien I felt. I know that there are families still struggling through ignorance, who may feel that they are the first, who may feel alone and alien.
In September 2016, after I received a letter from the American Porphyria Foundation, I mustered up the courage to start a blog about being alive while experiencing EPP. I write about perceptions and experiences that I hope can be useful, uplifting, and insightful to my family, and to any stray reader who happens along.
EPP comes with sadness and pain, and sometimes those are the only things I feel. But there is also happiness and humor in my life. I want to share that living in darkness doesn't have to mean living in perpetual gloom. I am just weathering the storm of life as best I can like anyone else.
If you feel alone or alien because of your affiliation with EPP, know at least that you’re not the first, just like I learned I wasn't the first, to have experienced this disorder. Even if you don’t believe it now, you can create happiness and hope in your world. If there is anything EPP can teach us, it is that we all can learn to find joy and beauty in a storm.
Storms are in the eye of the beholder.