retinitis pigmentosa – Page 16

The #1 Way to Assist a Person With RP in Public

Friends and family have often expressed to me and my sister their concern over whether they are being helpful when we’re out and about.
We have told people there is no right or wrong way, and no specific expectation, This is half-true. I posted a list of tips and pet peeves a couple years ago, though looking over it now, it may be too detailed to remember.
Some friends have observed our husbands’ interactions with us and followed their lead. This is an overall wise idea, as our men have been with us long enough to help us seamlessly. My husband, however, has been known to be so laid-back and hands-off that I have walked into signs and fallen down a flight of stairs walking right next to him! This may be why he recently told me that he feels excited when I pull out my cane. Continue reading “The #1 Way to Assist a Person With RP in Public” →

Paddington: My First Accessible Movie

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It was a typical night at the movies, except for one thing..

I could “see” the endearing Paddington Bear, with all of his slapstick British humor, thanks to audio descriptions at a nearby theater.

Audio Description is commentary and narration which guides the listener through the movie or play with concise, objective descriptions of new scenes, settings, costumes, body language, and “sight gags,” all slipped in between portions of dialogue or songs. Continue reading “Paddington: My First Accessible Movie” →

Book Review: “Now I See You”

“You’ve got to read the book I just finished,” I heard Joy telling my voicemail. This was not an uncommon message for her to leave. Recommending the latest and greatest books to each other has been happening since our “Sweet Valley Twins” days.

But what she said next sparked my interest a little more than usual.

“The author is a mom about our age who wrote a memoir about her life and she has RP just like us. She actually sounds like someone we would be friends with.”

I instantly knew she meant that we would be friends with her because of her personality, not her RP. I uploaded the book from Audible a few minutes later, and began the journey into Nicole C. Kear’s memoir “Now I See You”. Continue reading “Book Review: “Now I See You”” →

Bloom

Last summer I had the idea to start a legacy story-telling business that would help capture people’s life stories through video, audio and print. I bought 3 different domain names because I couldn’t come to a final decision, and the name I really wanted (Legacy Storytellers) was already taken. I worked on my web content, read and researched everything related to personal storytelling, met with experts in the industry, interviewed possible videographers, and began making plans to attend “The Association of Personal Historians” annual conference. I talked incessantly about my budding career plans, announcing to family and friends my goals for the year.

And then I took a little sip of air, often referred to as a breath.

And I exhaled for the next several months, wondering if this is the right time to start such an endeavor and feeling kind of embarrassed that I opened my mouth to so many people about it. Continue reading “Bloom” →

Choosing Our Struggles

I love to read about other people’s struggles, especially if they are very different from my own and if they have overcome something unimaginable to me. Whether it’s the personal memoir of an oppressed woman in the Middle East or wise sentiments from a man born with no limbs or a documentary about a wealthy hoarder in New York.

It doesn’t matter whether it’s dramatic, life-altering challenges, though those tend to be the ones that grab my attention, I glean just as much wisdom from writers like Brené Brown and Ann Lamott in their depictions of more common human ailments, such as shame and chemical addiction.

Back when I taught 7th grade, I was the only weirdo English teacher who chose “Life’s Biggest Challenge” as my students’ major narrative essay topic. While other teachers were assigning jovial topics like “What I Did Over Summer Break” in which kids could write about al the fun they had riding Big Thunder Mountain at Disney, I was “that” teacher asking 12-year-olds to think about their deepest struggles in life. And how they overcame them or how they continued to face them. Granted, preteens these days do face incredible challenges, and there were maybe 2 or 3 kids each year who were able to articulate them and put them into any kind of big-picture perspective in a concise essay. But for the most part, I read handfuls of narratives about overcoming skateboarding or gymnastics stunts that the students had attempted to master all of their lives. Continue reading “Choosing Our Struggles” →

Twin Powers, Mud Pits and Guide Dogs

Jenelle and I telling our kids bedtime stories on a recent shared vacation

My twin sister and I have always had a strong connection despite years of people comparing us to those Sweet Valley High books we grew up reading (yes, I’m clearly the nerdy journalist, Elizabeth, and she is the popular cheerleader, Jessica).

People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks. Continue reading “Twin Powers, Mud Pits and Guide Dogs” →

Adaptive Skiing

Yesterday was the final day of winter. And although I am really looking forward to sunny spring days and warm summer nights, I am going to miss all the winter activities. I recently learned to ski despite the fact that I thought skiing was something that I would never do. Mainly because every time I have pictured myself skiing, I envisioned heading straight into a tree or some other object/person not within my field of vision. Although running into objects makes for some great stories and blog material, it’s not my idea of fun.

Maybe it was the Winter Olympics, or my dad telling me about a skier with RP in the Paralympics that inspired me to try cross-county skiing this year and hopefully alpine skiing next year. I had no idea that adaptive skiing even existed, but once I started looking into it more, I learned that there are multiple organizations and foundations that support skiers with disabilities. Although I have not yet had the opportunity to receive any special training or adaptive tools, it is something I am looking into for the future.

Continue reading “Adaptive Skiing” →

3 Attributes You Will Quickly Develop as a Blind Mom

A friend recently gave me an article on 4 blind moms featured in “Real Simple” magazine. I was immediately struck by the beauty and strength of each woman, and I was a bit jealous of them for having such close blind friends. One of the women, Joy (great name!), talked about how they are each in awe of one another’s feats. “It’s like each of us has mastered a skill or has a bravery that the others don’t.” They all have guide dogs and are starting a national group called “Mommies With Guides”.

One of the things they discussed in the article was what they do differently as parents without sight. This got me thinking about my own parenting, and while I do have some vision, there are definitely some skills I have had to develop as a mom with low vision in order to be a good mom. Some of these are still works in progress, but they’re definitely the “muscles” that get the most use, and therefore the most strength.

Continue reading “3 Attributes You Will Quickly Develop as a Blind Mom” →

More New Beginnings

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. Continue reading “More New Beginnings” →

Take Inspiration: Blind Architect on TED Talks

As we head in to the New Year, I would like to dell out some encouragement to help our readers welcome a strong and hopeful 2014.

Blind Architect, Chris Cowney, gave this incredible TED talk on designing cities with the blind in mind, and how this not only benefits the blind but also offers major advantages for the cities themselves.

Chris Downey: Design with the blind in mind
What would a city designed for the blind be like? Chris Downey is an architect who went suddenly blind in 2008; he contrasts life in his beloved San Francisco before and after -- and shows how the thoughtful designs that enhance his life now might actually make everyone's life better, sighted or not.

My favorite take-aways from this talk are:

Continue reading “Take Inspiration: Blind Architect on TED Talks” →