Deborah Ann Woll, who plays baby vampire Jessica Hamby in HBO’s True Blood, has written an essay on the life lessons and the difficulties of loving someone who suffers from the genetic degenerative disease, Choroideremia. EJ Scott, Ms. Woll’s long-term boyfriend – who she calls “the love of my life” – is going blind as a result of this disease. Their journey together as they learn to adapt to EJ’s worsening sight, at the same time they embark upon adventures designed to raise funds for a cure, is both emotional and inspiring.
True Blood Cast Member goes from “Geek” to “Caretaker”
Ms. Woll is a self-described geek who, as a child, enjoyed the New Jersey Science Center. The exhibit that interested and frightened her in equal measure was one that replicated the experience of being blind. Years later, she draws on the experience of the exhibit to inform her understanding and compassion of EJ’s condition. She writes openly of the difficulties associated with learning how to care for EJ with kindness and compassion, while mastering the practical skills this requires:
“As for me, I have learned what it is to be a compassionate caretaker, and what a challenge that can be at times. EJ is incredibly independent but still there are things I must help him with and these will only increase as his sight worsens.”
Both EJ and Ms. Woll remain upbeat in the face of this challenge. They seek to inspire others. EJ has embarked on the 12 Marathons in 2012 Campaign (you can follow his journey on Twitter @12marathons2012) in order to raise awareness of Choroideremia, as well as funding to search for a cure. Ms. Woll supports EJ’s endeavor and takes solace in the fact that “seeing is not done only with the eyes, but with the heart as well”.
Learn more about EJ’s campaign to raise funding and awareness for Choroideremia.
Source: The Wallstreet Journal’s Speakeasy
Photo Credit: Daniel Tanner/wenn.com
