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:

Own
Less
Stuff

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
This lasted for about 3 weeks, and then it got a little tiresome.  Some of my regular errands were taking 2 or 3 times as long as they did before having Roja.  All the time I was “saving” from walking at my fast, new pace with my furry friend was quickly being spent answering questions about guide dogs.  One woman followed me down the frozen food aisle at Trader Joe’s, telling me about how she wants a service dog for possible seizures caused by these strange rashes she was getting all over her body.  I certainly felt bad for this woman and her rashes, but I just wanted to find the party meatballs and move on.  Another woman found me  among the soups and lentils and asked if I’d been to the Wheaton Eye Clinic and, if so, had I tried the giant magnifiers?
Don’t get me wrong, I really enjoy connecting with new, interesting people, and I wish I had the time nd energy to do it all day long.  But at some point my kids have to eat and I need to get the house cleaned up.
I was mulling over this conundrum one day when I remembered the little cards that Guide Dogs for the Blind gave us right before graduation.  I remembered one of the admissions counselors telling us that these were great cards to hand to people who have questions about guide dogs, especially during those times that you’re in a hurry but don’t want to be rude.  So I started handing them out, and it was working well. But I was noticing that most people were really interested in hearing specifically about Roja since she was the guide dog standing near them.  “What’s her name?  How old is she?  How long have you had her?”  These questions couldn’t be answered by the GDB cards, but I also still didn’have enough time to share about Roja in the detail that I wished to with each person I met at the pharmacy.
“I wish I could just show people I meet the blogs I’ve written about Roja,” I remarked to my husband.
“Put a sign on her harness linking to your blog!” he laughed.
Hmmm…… Not a bad idea.
But I didn’t want to cover us the GDB logo on her harness.  Plus, how would people remember the web address?  And what if they really didn’t want to read about me and my twin and Retinitis Pigmentosa?  It’s Roja they care about.
That’s when I came up with the idea to have a specific section dedicated to stories written about (and by!) Roja.  My friend Tammy sent me a super-cute pic her son took of Roja, and I posted it on her dog blog.   Then I thought about printing her picture to paste on the GDB cards.
Or better yet, I decided, why not design Roja her very own cards?
My husband helped me design a card with Roja’s sweet yellow face with the big brown eyes on the front and her name, birthdate, blog address and GDB address on the back.  I really wanted to have the information printed in Braille as well, but I couldn’t find any companies to do it for a price I could afford, so I decided to save that for a later date.
For now, I have these perfect little linen cards to hand out to any inquiring minds.  I have also been handing them out at the schools I’ve been giving presentations at, which the kids seem to really like.

Roja card
I’m not sure how many people actually go home and look up Roja’s blog, although I did get my first comment from someone who I met at Trader Joe’s last week, and that made me smile.  It made Roja smile too, because she didn’t have to stand next to me while I yapped with a stranger for 15 minutes.  Instead, she got to go home and play tug with me for a few minutes while Curious Customer got to enjoy reading Roja’s most recent tales from the comfort of their home, not in the frozen food aisle.

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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

 

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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.

Flush.

Speaker phone. Good idea.

Elevator version of Phil Collins song. Bad idea.

Fold laundry while on hold. Good idea.

Bump the phone with the laundry basket and lose call. Bad idea.

Re-dial Giant Cable Company.

More waiting.

More instrumental Phil Collins.

Then a small miracle.

“Thank you for calling Giant Cable Company, how may I assist you?” Smooth, articulate voice. Nice enunciation. Young guy. African-American, maybe?

Fumble to get phone off speaker. Careful…..you must not lose this call.

“Hello? Is anyone there?”

“Yes, yes, sorry….just switching off speaker phone. “

“Can I get your name and account number?”

“Yes, 5320150. Joy Thomas”

“What can I help you with today, ma’am?”

“I’d like to switch to the basic plan, please”.

“I’m sorry, ma’am, you’re not the main account holder. I would need to speak to Benjamin Thomas in order to make any changes to the account.”

Not the main holder?

“Seriously? I take care of all the bills and household logistics. Plus, Benjamin is the one who told me to call and downgrade because we just don’t watch enough TV to make it worth it. I’ve been trying to get in touch with someone the whole week and finally just got through.”

“Ma’am, I would need to speak to Benjamin about this matter. I am not authorized to discuss Benjamin’s account with you. He will need to call back to discuss any changes.”

We are still talking about cable, right?

Irritation turns to panic.

All those hours on hold. Wasted. All those Phil Collins nightmares. For naught.

Ben will never have time to stay on hold for an entire week.

This will not get done unless I do it now.

Think fast.

“Um…okay. Let me get my husband on the phone.”

Panic rising.

You cannot lose this call.

Just be Ben. Use a deep voice.

Heart beating outside of chest.

Deep breath.

(pathetically-deep Darth Vader voice) “Hi, this is Ben.”

Pause.

Crap.

(incredulous, no-nonsense half-laugh) “ma’am, this is still you.”

Mortification.

Am I in an SNL skit gone bad? Doesn’t this guy know how improv works? Play along, dude.

You cannot lose this call.

(more Vader voice) “No, this is Ben. I want to switch our cable to the basic plan.”

(ice-cold tone) “Okay, in that case…..you would lose your current special Internet pricing. So doing this would actually increase your cost.”

I don’t think so.

(steady, deep voice) “Then I think I need to cancel our cable altogether. “

(fierce) “Okay, you can do that by bringing in a valid photo id to any one of our Giant Cable Company locations.”

Since when?

(still trying to stay Vader but hitting a falsetto here and there) “So you’re saying I cannot cancel my cable unless I physically come in to one of your office locations?”

(Stony) “Yes, that’s what I’m saying.”

Heat.

Panic.

Click.

Nice one.

You lost the call.

Now what?

Think.

Think.

You need to use your own voice.

With a new name.

Dial Giant Cable Company Sales, not Customer Service.

Someone answers right away.

Don’t waste time.

“Hypothetically, if I were to sign up for cable, would I be able to cancel over the phone or would I need to go into your office to cancel?”

(sheepish) “Um, as far as I know, you can just cancel over the phone.”

I knew it.

“Okay, I’m actually a current customer and called sales because your department answers the phone quickly. Could you please transfer me to Customer Service?”

“Sure”.

Routing.

On hold again.

Time to think.

No more Deep Throat. You need a different identity.

Seemingly less hold time.

“Thank you for calling Giant Cable Company, how may I assist you?” Young guy. But different guy. Phew.

“Hi, I’m calling because there seems to be an error with the spelling of my name on my account. There’s actually an “a” at the end of my name, Benjamina. Sometimes people mistake it for a guy’s name.”

“Oh, I’m so sorry, ma’am. I can change that for you.”

Was it really that easy?

“Thank you so much. I’d also like to talk about different package options.”

“Certainly, Benjamina, let me go over some of our current specials….”

Downgrade successful.

Lower price and all.

Go Benjamina.

Several hours later.

Text from Ben: Why am I getting e-mails from Giant Cable Company written to Benjamina Thomas?”

Originally posted on Bold Blind Beauty on June 7, 2016
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“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?”

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Photo Credit: Morry Angell, Guide Dogs for the Blind

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Originally posted on Bold Blind Beauty on May 3, 2016
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Freedom in Acceptance

Jenelle & JoyIt’s 1983, and two curly-haired 5 year-old girls sit on their dad’s lap, staring into a screen of flashing lights.  They hold their heads back as doctors place stinging drops into their matching hazel eyes, and they wonder what all the fuss is about. Continue reading

(with adaptations for moms who are visually impaired)

I’m not a crafty mom.  I’m embarrassed to admit that I’m not even on Pinterest.  I’m usually too tired for big projects that involve more than one or two steps.  I also have a visual impairment, which doesn’t help.  Basically, if I can do this with my kids, so can you!
Why the sudden desire to do a homemade project?

Well, I recently started homeschooling my 2 creative, amazing daughters, ages 6 and 9, and I feel like they deserve some fun, interactive projects. Continue reading

photo description: Joy speaking on stage at GDB Legacy Luncheon with Roja by her side.

photo description: Joy speaking on stage at GDB Legacy Luncheon with Roja by her side. [Photo credit: Morry Angell, Guide Dogs for the Blind]

Just when I thought Joy was finished with all her little surprises (i.e. relocating me from Santa Barbara to Chicago, dressing me in lion costumes, and parading my stellar guide work skills all over schools), she pulled out the big one: a stage.  Yep, an actual stage with a bunch of humans staring at me (more than usual, that is).

The bonus?  It was back where I was born. In fact, we even stayed in a room that looked just like the one I first met Joy in, back in training (if I weren’t at the top of my game, I would have been nervous she was exchanging me!  But nope, she needs me too much. Yep, I’m THAT good….) Continue reading