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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. Continue reading

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

Continue reading

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

After a 4-day cross-country road trip, our family moved into our new home in Southern California last week.  Moving into a new space is exciting, as it’s a chance to reorganize, switch out furniture and experiment with new decorating styles.  It can be a tad stressful, however, especially for someone with low vision.  Learning and memorizing new layouts while trying to figure out the most functional aesthetic way to set up all of your things can feel daunting, particularly when you are accustomed to having a very specific place for each item.

In our case, we had to fit all of our belongings in a 16 ft. storage pod prior to moving, which meant that we had to part with a lot of stuff, including our couches and kitchen table.  Hence, we’ve spent the first week both unpacking and re-buying furniture and organizational items.  I’ve definitely learned a few things this week that I’d like to pass on to our readers.

Whether you’re reorganizing while spring cleaning or moving into a new home, here are some tips to get you started:

1 – Clear the floors of all clutter.  Visually impaired or not, visual clutter sucks the life out of life.  During the first few days here, I kept tripping over shoes, leashes and purses (most of which were mine!), as all of these items seemed to congregate in our living room by the front door.  I knew that tossing all of our shoes into the small hall closet would be disastrous when it came time to locate the shoes and head out the front door.  So we just kept leaving the shoes out, but even when they were nicely lined up by the door, they were taking up coveted floor space and stressing me out (first world problems, I know!)  On one particularly cranky evening, on our 4th or 5th evening here, I grabbed my purse and announced, “I’ve had enough of this!  We’re going out shopping and not returning without a hanging shoe rack!”  And now our shoes hang quietly in the closet, not daring to bother this clutter buster.

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Photo description: Closet with an organizer for shoes

2 – Call in the troops!  Fortunately, my parents came to town the day after we moved in, so they were with us for the first week’s transition and helped out a TON!  Whether helping to set up shelving, playing with the kids, or unpacking and organizing bins, they definitely earned their “free” room during their 11-day visit!  If you have neighbors, friends or family who are willing to lend a hand, take them up on it!  And don’t be shy about reaching out to ask for help.  Moving is not the time for prideful independence!

Photo description: Joy and family with Joy's parents, eating at a table in a scenic outdoor setting.

Photo description: Joy and family with Joy’s parents, eating at a table in a scenic outdoor setting.

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Photo description: shelves waiting to be filled in a garage

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Photo description: microwave with tactile bumps placed on certain buttons.

3 – Make shelving a priority.  In an expensive, population-dense area like SoCal, every inch of space matters.  Even though we were accustomed to living in a small house in Illinois and are renting a decent-sized townhouse, we lost our basement and barn storage, so we’re relying heavily on our 2-car garage here (the upside of being a one-car family!).  My husband got some awesome, inexpensive shelves from Lowes, which have helped us get organized.  Shelving is always worth the extra money and effort because you can’t put a price tag on sanity!

4 – Tactile bumps are your appliances’ best friend.  Learning to operate my new appliances was one of my biggest visual challenge, which is probably why I waited several days before even attempting to tackle it (seriously, my parents did 5 or 6 loads of laundry the first several days here before I even ventured to find the lightswitch to the laundry room!)  Once ready, however, I mastered my appliances rapidly, one-by-one, beginning with the washer and dryer.  Since our previous basement washer and dryer were around 50 years old with no bells and whistles, the new sounds that chirped out of these appliances left me both intimidated and exhilarated.  Fortunately, none of them are touch-screen, so tactile bumps placed on certain key buttons are the perfect accessible solution. My mom carefully went through each button and setting with me, and I scoured over them as if preparing for an exam (those pop laundry quizzes really sneak up on you)  I put raised tactical stickers on the settings I would be choosing most often and memorized the buttons in between those.  And then I moved on to the kitchen, where my dad walked me through the stove, oven and microwave.  Since I have a double oven for the first time in my life, I felt pretty crafty putting all round raised dots to symbolize buttons that coincided with the top oven and square-shaped bumps for buttons associated with the lower oven.  The microwave was a bit trickier at first, but after affixing stickers to certain numbers, cook time, and the start button, it too became a cinch.  The dishwasher buttons proved to be the trickiest, as they’re located on top of the door where it closes, so raised bumps were not an option.  But the buttons themselves were slightly raised, and the “normal” cycle is 3 in from the left, and the “dry” button is 3 in from the right, so those ended up being easy to memorize.  I honestly don’t know what I’d do without these tactile bumps to orient my fingers and brain….such a simple accommodation that makes a huge difference!
5 – Take breaks, be grateful and have fun!   Moving is ranked among the top most stressful life events for a reason.  It’s hard.  You’re relocating a bunch of stuff that you didn’t realize you still had, you’re grieving the loss of neighbors, friends and family that you will no longer see daily, and you’re trying to figure out how to fit things in unfamiliar drawers and cabinets.  So be extra kind to yourself.  I know it’s cliche, and I am probably the worst example of taking the time to enjoy such tasks, but the few times that someone was able to convince me to take a walk (or an early morning ocean trip!), made such a difference in my energy and stress level.

Gratitude continues to be the way to navigate through any stressful scenario.  Yes, there is a new house to figure out, but be thankful that there is a house to figure out.  Yes, there are lots of belongings to unpack and organize, but be thankful that there are lots of belongings (or be so fed up that you give a bunch of them away!)  And yes, there are lots of changes and transitions to navigate, but be thankful that life would offer such adventure!

12376787_10153747095434807_2114032454473502200_nLike most guide dogs, Roja does great on car rides, though our family’s recent 4-day excursion from Illinois to California really put us to the test.  As we enter spring and summer and the season of road trips, I thought I’d pass along some travel tips I learned along the way!

1. Prep and pack well.  Lay the essentials out the night before you leave, to ensure you don’t forget any of your precious pup’s items.  Be sure to include:  food, dog bowls (collapsible travel bowls if you’re tight on car space), dog bed/rug/crate (depending on preference and space, harness, leash, grooming kit for teeth and hair, small toy or bone, gentle leader, a tie down, and poop bags.  You may also want to pack special high-reward treats if you foresee transition issues.  And if you don’t already have bottled water packed for yourself, make sure to at least pack some for your pup.  You can certainly get water at rest stops, but if you’re trying to make good time on the road, the stops might be few and far between.

I did remember to pack most of Roja’s items but I made the mistake of not condensing them to one bag, which made it difficult to locate items, such as the grooming kit, when I needed them.

2. Avoid areas that may contain ticks and fleas. One of my friend’s pet dogs contracted Lyme disease from a tick at a rest area en route to California a few years ago.  As you encounter new terrain, especially at rest stops in rural or wooded areas, ticks can be a concern.  The risk of pesky fleas or even Lyme diseases may be higher than you’re used to in your area.  If your  dog is  pretty good at relieving on pavement, that’s your best bet.  If they prefer grass or shrubs, try to stay close to the building and in lower, mowed grass.

3. Be wary of shady gas stations in the middle of nowhere. We learned this in the middle of New Mexico.  As we started to exit our Subaru, a stray dog came running up to Roja, and since my husband wasn’t sure whether this dog would be friendly with Roja (or was even vaccinated!), he quickly put Roja back in the car, closing her tail in the door.  Since Roja is so quiet, we didn’t even know it was stuck until our 6-year-old, who was next to Roja, started sobbing.  “Mom! Rojas tail is in the door!” Since my husband was using the restroom, I opened the door to free her tail, which was just enough time for the mangy stray to jump in our car.  I tried to lift the filthy dog out, but it wriggled out of my grasp.  I opened the door, and both dogs ran out.  I finally reigned Roja back in and then used the bathroom, which had the distinct smell of a barnyard.  Oh, and the gas pumped so slow at this station that it had only reached $5.00 worth of guess in the 20 minutes we were there!  And that’s what you may encounter in rural New Mexico!

4. Doggie breath mints and water should be within arm’s reach at all times. Roja doesn’t typically have very bad breath, at least not like some of my friends’ dogs.  But the combination of anxiety over traveling and the disruption of regular feeding/water schedule must produce some extra toxins because her breath was rancid!  Roja was directly behind me, at my daughters’ feet, and I could always tell when her velvety head had poked up between our seats to say hello, as the stench of dead fish wafted over the center console.  Unfortunately, I did not pack any greenies. I did brush her teeth one night at the hotel, which helped, but I wished I had something to just pop in her mouth in the car!

By day two, I learned to have her water dish with a bottle of water at my feet so that I could put water on the console at a moment’s notice, as she didn’t always want to drink at rest stops but then would end up panting between stops.  Originally, we were keeping her dog bowl in the very back behind the suitcases, which was impossible to access unless we were stopped.

 

Hope these are helpful!  Happy travels!

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Visual art has never come to me intuitively, the way writing has, though I don’t think I can attribute this entirely to my eyesight.  I’ve met talented artists who are legally blind and still have a strong sense of spatial awareness on paper, and there are artists who are color blind who use brilliant color schemes.  For me, however, any type of art class has always felt like a foreign land in which I don’t understand the cultural norms.
So I surprised myself a bit when I signed up to take a painting class. Continue reading

Roja YogaIf you or a loved one has a disability, you’ve probably encountered many wonderful, helpful people. You’ve probably also encountered some, shall, we say, overly helpful folks?

Being legally blind, I usually have no shortage of helpers while out in public with my cane or guide dog. “Can I get that door for you?” “Can I grab some silverware from the buffet for you?” “May I assist you with reading that menu?”

Most of these are what I’d consider helpful gestures, and I sometimes take people up on their offers if my hands are full juggling children and leashes, and other times I politely decline the offer, and all is well. Every once in awhile, however, I find myself in a code red, help-aholic situation.

Like a couple weeks ago at yoga. I was attending a class with an absolutely amazing teacher at a studio that I practice at regularly. I arrived two minutes before class was starting, which really isn’t ideal when you have a guide dog to get situated, a mat to roll out and yoga props to gather. To make matters more challenging, the tiny room was packed with people.

Upon our arrival, everyone began maneuvering themselves around to make room for us, and a couple of my classmates who know me well offered to grab my props while I got situated.

“Oh my gosh, thank you!” I breathed a sigh of relief. Just then a voice popped up next to me.

“Hi, I’m Marcy and I went ahead and folded your blanket and put your water bottle at 2 o’clock. I also took your dog’s leash and tucked it behind her because I didn’t want it to get in your way.”

“Oh thanks. Nice to meet you.” I stammered, slightly taken aback that she had touched my things without asking. I try to give people the benefit of the doubt, however, so maybe she just saw others being helpful and thought she’d do the same. I got into Child’s Pose and hoped for the best.

“Today we’re going to start with a gentle twist,” stated Greg, our instructor, “Begin by crossing your right leg over…..”

“Here, like this!” Marcy interrupted loudly, touching my right leg. “Put that leg over the other one and wrap it around.”

Twists usually are confusing for me (so much leg criss-crossing, and I don’t listen very well for a blind chic!), but I usually eventually figure it out. Apparently I was not getting into the pose fast enough for Marcy.

I quickly got into the correct twist position, but then missed Greg’s next instruction while Marcy was loudly instructing me, and I couldn’t see what pose Greg was moving into.

“We are on all fours now!” Marcy did not excel at whispering.

Oh, Table Pose. I knew that one. “Now we’re going to go into a gentle downward dog,” Greg continued. Oh good, I know how to do that well, but I usually like to do a cat/cow or two before getting into my down dog. Greg always encourages his students to listen to what their bodies are telling them to do, so I make slight variations and add in poses at times.

“Downward dog is where you….” Marcy began. She was not okay with variations.

“Yeah I know,” I whispered, trying to get back into my yoga zone as I moved fluidly into my down-dog. There, now Marcy could see that I knew what I was doing.

But her little “helpful” interjections continued. I found myself trying to speed quickly into each pose, for fear that Marcy would loudly offer her assistance if I didn’t high-tail it into Warrior I. Occasionally, instructors come around and readjust students, and I really don’t mind when they adjust me or give reminders. They are, after all, the instructors, and most do it in a way that still honors the individual practice. But Marcy was not only not honoring my practice….she was missing out on her own.

“Remember to play with these poses and have fun,” Greg told our class gently, “It’s your own, individual practice, so try to go inward and sense what your body needs.”

Yo, Marcy, he’s talking to you.

But Marcy was too busy observing my Wounded Warrior to listen to Greg’s gentle reminder.

I, too, was having trouble focusing. All I could think about was how pushy Marcy was with her help. And the feelings it brought up were very familiar to me. It didn’t feel like Marcy’s help was about me at all. The whole thing felt like it was very much about her need to be a helper.

Marcy had a need to be needed, and I was filling that need perfectly.

I’d like to say that I came up with some catch-all, perfect phrase to get Marcy off my case (or, more specifically, off my mat), but I couldn’t quite stop in the middle of class to hold a help-aholic intervention. If I was going to enjoy the rest of my yoga class, I knew I needed to do what the mighty yogis teach: Be mindful and ignore the chatter. Not just Marcy’s outward chatter, but the conversation going on in my mind about Marcy and how annoyingly helpful she was.

I began to listen only to the calming music playing through Greg’s iPod. I closed my eyes and listened to his instructions, and when Marcy would start doing her thing, I simply focused entirely on my breath and tuned her out. I didn’t whisper thank you. Nor did I whisper shut up. I just inhaled and exhaled. And you know what? After awhile, I didn’t have to ignore anything because Marcy had ceased her chatter.

I think there is a time to confront and be straightforward with people. But I also think there is a time to be quiet and remember that their issue with over-helping has nothing to do with you. It’s about them, and sometimes you need to allow them the space to figure it out on their own. After all, isn’t that what you want from them?

Thank you, Marcy, for teaching me an important lesson. Namasté.