Tag: retinitis pigmentosa

Not Fade Away: A Book Reflection

Not_Fade_AwayI first saw Rebecca Alexander on the Today show back in 2009, and I was intrigued by this young, peppy athlete, who was my same age and also losing her eyesight.

The idea of going progressively blind has always sent a nervous chill down my spine, if I’m being honest, yet I’ve always taken comfort in the capabilities of my other 4 senses, thankful that they help compensate for my failing eyes.  So the idea of losing another sense, especially one as crucial as hearing, seems unimaginable to me.  Yet this is the story Rebecca unravels in her memoir, Not Fade Away. Continue reading “Not Fade Away: A Book Reflection” →

Mr. Clean

I have a dirty little secret to share.  A housekeeper cleans my home once or twice a month.  And….that’s it.  That’s the secret.  Pretty dirty, I know.

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I am not wealthy, but rather house cleaning is something I prioritize in my monthly budget.  It’s not as though my house needs to be perfect.  I have 2 small children (8 if you count my husband), and a dog, so a perfect house would be quite a stretch at this point in my life. Continue reading “Mr. Clean” →

Free

My locket always reminds me to grab my cane. But I don’t always remember to wear my locket.  When my friend Emily first gave it to me last summer, in memory of a crazy, divine experience , I wore it a lot, and I carried my cane a fair amount.  But over time, I’ve come up with all kinds of excuses not to wear my locket.  None of them good ones.

What if it falls off my neck, and I lose it?  What if it doesn’t go with my sweatpants?  What if I become the weird locket girl who doesn’t even shower without it? Continue reading “Free” →

Life Without a Dishwasher

Spring has sprung, and that means lots of park dates with the kids. Playground conversations amongst the parents can be riveting. Yesterday’s topic of discussion was dishwashers. Some people have them. Some do not. Two of the non-dishwasher moms were lamenting this missing appliance

“Yes,” I chimed in, “That would be so hard not to have a dishwasher.”

“Well, I mean, it’s not that bad,” one of them responded in defense, “You just get used to it after awhile.”

“Yep,” piped in the other mom, “People lived for many many years without the luxury of dishwashers. It’s really not a big deal.”

“True,” I agreed, changing my stance like a crafty politician, “It would probably force me to stay on top of my dishes if I did not have one.” Continue reading “Life Without a Dishwasher” →

Returning to High School….With a Cane

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I hadn’t set foot in my high school since 1997, when I graduated (eeks, I feel ancient typing this!)  That is, until 2 weeks ago when I heard they were putting on the play, “The Miracle Worker”.  My 3rd-grader had read all about Helen Keller last year in 2nd grade, and she was fascinated with the story of Helen and her teacher, Annie, so my mother-in-law and I decided to take her and my niece to see it. I had also heard that there would be a blind actress in the play, making it even more authentic, and piquing my curiosity. Continue reading “Returning to High School….With a Cane” →

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

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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” →