When you live with a rare degenerative eye disease, it can feel isolating at times, as if no one understands what it feels like to be you.  Then, one day, you open up a book and read a story that makes you feel as if you’re reading your own diary.  This is how I felt when I read Look Up, Move Forward, a recent memoir by Becky Andrews.  While the connection I felt to the author drew me in, your life doesn’t need to mirror Becky’s in order for this book to captivate your attention.      

I first met the author, Becky Andrews, last fall when a mutual dream of creating retreats for blind and visually impaired women brought our paths together.  We connected online, and the majority of our correspondence focused on details for the “Daring to Own Your Story” retreats that launched last summer.  When I finally met Becky in person at the first retreat, she struck me as the type of person you just want to sit down with near a cozy fireplace and talk for hours.  The intensity of the retreat didn’t leave time for fireside chats, and I went home from the retreat wishing I had more time to get to know this energetic woman.   Continue reading


recent Salt Lake City gathering.

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Following an epic 3 day yard sale (a pathetic yet lucrative way to spend Labor Day weekend), my eyesight appears to be at it’s best.  No, I have not discovered a cure for Retinitis Pigmentosa.  But I have discovered the cure for not being able to find what I’m looking for.  

Three simple words:


I can hardly call myself a “minimalist”, and yet I’ve recently taken the minimalist approach in several categories, creating the illusion of improved vision.    Continue reading

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One year ago today, Roja and I graduated as a team from Guide Dogs for the Blind in San Rafael, CA, and life hasn’t been the same since. In addition to getting Roja, this past year has been full of both amazing and difficult changes. From moving across the country and being apart from dear family and friends to growing in confidence as a mom, writer and teacher, Roja has been a constant companion who shows unconditional love (and licks!). Continue reading

Snowboard Photo

Photo description: Ashley holding her snowboard with her guide dog, Rick, by her side.

As soon as I started connecting with Ashley Nemeth from Mommies With Guides, I immediately noticed something refreshing about her: she is completely matter-of-fact about her blindness and her accomplishments.  She is almost totally blind, so as soon as I heard that she is an avid snowboarder, I of course, had to ask how she does it.  I think you’ll find her response quite interesting!  

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When you have a guide dog, you sometimes feel like a famous person getting stopped frequently to sign autographs, minus the actual signatures and paparazzi.  When I first got Roja last year, I loved it when people stopped me to ask questions.  I didn’t mind if it turned into a longer conversation, as long as I was able to share all about Roja and Guide Dogs for the Blind.

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So much has transpired in the last 5 years of blogging together.  Our perspectives have shifted dramatically.  If you look at one of our very first posts, “To Tell or Not to Tell”, about whether to disclose our vision loss in public, to more recent posts about guide dogs and canes, the shift is obvious.  But it didn’t happen overnight.  And it didn’t happen without a lot of input and support from friends we met in the online community.

2011-2012:  We’re not alone.  Between our readers, Facebook groups and fellow bloggers’ posts, we discovered a whole new “blogosphere” of people with Retinitis Pigmentosa and other conditions.  It was this connection that pushed us to keep writing, keep exploring, and keep discovering new things about ourselves and the unique world of vision loss.

2012-2013:  There’s a lot more to life than going blind.  If you look at our archives, you’ll notice this is the year we took a little hiatus.  Jenelle had her second baby, Joy started working on other writing projects, and life got busy.  We took a little break from both writing and reading vision-related blogs for awhile, realizing that there are so many more aspects to our lives than vision.  But when we picked back up and started writing consistently again, we were once again greeted with enthusiasm and encouragement.

2013-2014: The blind community is as diverse as the general population. Blindness is something that crosses all cultures, age groups, genders, and socioeconomic levels.  Consequently, the personalities, likes, dislikes, hobbies, views, etc. are extremely diverse.  This was the year we really began discovering the wide array of people in the blind blogosphere.  We have had the privilege of connecting with a multitude of interesting, yet often very different friends in the online blind community, including blind active mama friends, crafty comrades  adventurous, witty intellectualsartsy, clever New Yorkers, blind Canadian advocates, bold blind fashionistas, and let us not forget our guy-friend blogger and his amazing TEDtalk. And this just scratches the surfaces of interests, personalities and geographic locations.  IMG_3646

Even among assistive devices, people have their things; some like dogs, others canes, still others echolocation, some nothing, some braille, some hardware, some software. Under the umbrella of “blindness”, there are a select few who are in complete darkness (10 percent, like our friend and Youtube talent Joy Ross), others who have light perception, some shapes, some puzzle pieces, some just in daylight, some just at night, some large print, and even some who “drive blind“.

2014-2015:  The blind community has a strong, growing voice.  There is a growing voice in the blind community that is influencing culture.  This is the year we really started noticing an explosion of public awareness in the media: bloggers started popping up left and right (blind mamas, blind papas, blind professionals, you name it!).  These people have always existed, but it seems they have been growing in their public presence and confidence.  A major magazine, Real Simple, feature spread on blind moms with guide dogs, and reality tv producers have been seeking out blind talent.

Most of these efforts are positive and have the intention of educating the public, though this rise in media attention has created some controversy over whether people are overdoing it in regard to “inspiration”.  We in the blind community are, after all, just living our lives, and humans have a way of adapting to most anything.  It can be confusing when simple daily tasks are hailed as “amazing”.  On the other hand, there are unique challenges when it comes to sight loss, and the human capacity to overcome and move forward is, in itself, inspiring.  From our perspective, if it can help inspire others to do the same in their own lives, whatever their unique challenge happens to be, then it is noteworthy.

IMG_36472015-2016:  Shame is a common theme.  We used to think that we were the only ones who tried to hide our vision loss.  We have since discovered that this is actually a common phenomenon among people losing their eyesight.  Fortunately, amazing organizations such as the San Francisco Lighthouse for the Blind, are recognizing that this is an issue and have training, counseling and other programs available to help people get past the stigma.  “For those with changing vision, the daunting part is not usually the fear of darkness, but.the fear of admitting that you’re different.” – San Francisco Lighthouse For the Blind & Visually Impaired



photo description: A woman’s face (Joy!) is morphed with a man’s beard and hairline (Ben!). If you cannot visually see this photo, consider yourself fortunate, as it is fairly disturbing!

I was reminded of Benjamina last night when a cable salesman came to our door.  Fortunately, we now use Netflix and don’t even have to deal with Giant Cable Company any longer, but friends still teasingly call me Benjamina from time to time, especially when there is trickery involved. Please enjoy the legendary tale of Benjamina..]

45 minutes on hold.

5th phone attempt this week.

Just want to downgrade my cable.

Please, Giant Cable Company, hire just one more person. I’ll forgive you for routing the call to India. Please, just someone pick up the phone. I hate taking the phone into the bathroom with me. Please just pick up. Continue reading

Originally posted on Bold Blind Beauty on June 7, 2016
View, comment on and share the original post here.

“I don’t understand why I didn’t get the job,”

I said to my supervising teacher, “You gave me such stellar reviews from my student teaching, and I feel like I described my teaching style and goals really well in my interview. I have a 4.0 GPA, and the students loved me!  Did the principal say anything to you about why he didn’t hire me?”


Photo Credit: Morry Angell, Guide Dogs for the Blind

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