My sister and I started Doublevisionblog to reach out to people facing blindness from RP, and to educate their family and friends. In the process, we ended up educating and connecting with our own family and friends in ways we had not imagined or originally intended

Connection with others, especially when facing major life challenges like blindness, is like salve for the human spirit. It soothes and uplifts and even heals.

The readers that we have connected with are now part of our story and will forever be threaded into the pain and hope of our plot lines.

It seems that whenever I start to wonder whether doublevisionblog is meeting its original purpose, we receive a comment or e-mail from a reader that blows us away. Like the Facebook message I received from a woman named Jennifer, who is a young mom and teacher with RP.

You are my inspiration. Been reading your blogs for awhile and I am so happy to see a positive young mother like myself with RP. You will never know how happy it has made me.


Since it is often family and friends who comment on our posts (thanks!), I get especially giddy when we receive comments from strangers, particularly people with RP. Like the comment that came from a reader named Heather a few months ago. She had been searching for info on Dr. Fishman, my long-time eye specialist, when she came across our blog. She had just been diagnosed with RP and is at a similar life stage as us. Reading about her fears of the future, lifelong dreams that may need to be altered, and the pain involved in processing such a new diagnosis, reminded me why we continue to post, and for whom.

Sometimes I struggle with being vulnerable with strangers and wonder why I share intimate thoughts with the public, and then I end up reading comments like Heather’s, and I know exactly why:

All I’ve been doing is crying all week but I came across your blog tonight and I have to say it was the first time I found something on RP that was reassuring, inspiring, and hopeful. The fact that you guys have had RP your whole lives and you still live a fulfilled life with kids gives me hope.

In e-mailing with her further, we discovered that she works in the town where I live, so we were able to meet for coffee. Meeting and connecting with others with RP was not something I had originally even considered when we started doublevisionblog, but it has definitely been a surprising gift.

For me, another unintended outcome of starting this blog is that I write far more often than I used to, and not just about vision-related topics. I am slowly starting the novel that I never thought I’d actually sit down to write. And I am constantly jotting down ideas for other, shorter pieces, some of which I have posted on our blog, despite being a bit off topic.

In an attempt to stick more closely with my sister and I’s original intent for our blog, I decided to start my own personal blog.

My sister and I will, of course, continue to post on doublevisionblog (Jenelle will eventually post again; she has been busy with her newest addition!)  It may not be quite as often, but as RP-realated scenarios come up, we will debrief them here!

So without further ado…..

Here is the link to my new blog.  I actually started it a couple months ago but wanted to wait until I had a small handful of posts before sharing.  Please check it out when you get a chance!

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