Sometimes we laugh about it, sometimes we cry about it, sometimes we share news and medical articles about it, sometimes we avoid talking about it altogether, but it’s always there. We’re identical twin sisters who have grown up with retinitis pigmentosa RP.
We’re now in our late 30’s, both married to amazing guys, and each have 2 kids. Although we look a lot alike on the outside and share the same challenges of vision loss, we often have different perspectives on the disease and each deal with it in our own way. We wanted to create a blog mainly for other people with RP, as we find it helps to feel connected when facing the day-to-day challenges of living with RP.
We also hope that it can give family and friends of people with RP, Ushers, and other similar diseases a glimpse of what it’s like to live with these types of challenges. And frankly, this is therapeutic for us, so even if no one (besides our mom) reads it, we’re gonna write it anyways!
A little background on us individually:
Jenelle (the oldest by 4 minutes): I moved from the Midwest to the Northwest to attend college, and have made it my home. I live in a small yet vibrant mountain town in Washington State. I love the outdoors – hiking, cross-country skiing, kayaking, and playing at the river with my 2 children Cora and Benny. My indoor hobbies include fashion magazines, yoga, reading all types of books but especially historical fiction, and writing children’s stories and posts for doublevisionblog
Joy: Residing just outside Chicago, in a historic downtown area with a “walker’s paradise” score on walkscore.com, I am basically a professional walker (aside from a few frigid winter days, when I live as a recluse eskimo). A former English teacher and social worker, I now spend my days teaching and nurturing my 2 little girls, Lucy and Elli. Besides spending time as a free-lance writer, I read almost every book I can get my hands on, am a podcast addict, practice hot yoga, laugh with friends, guilty-pleasure shop at Anthropology, meditate by a nearby river, and enjoy discussing conspiracy theories.
Though we live 2000 miles apart (Jenelle in WA and Joy in IL), we talk almost daily and hope that this blog will help bridge the gap in miles.