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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.

1. It usually occurs slowly. While there are some people who go blind overnight or in a matter of days, such as with detached retinas, following eye surgeries, or with certain types of Glaucoma, the vast majority of people with degenerative diseases such as Retinitis Pigmentosa and Macular Degeneration, lose their sight gradually, over a period of many years.

2. Just because our vision changes doesn’t mean our interests do. Some people assume that certain hobbies that are sight-related, such as sports, fashion, makeup, woodworking, etc are no longer interesting or feasible after vision loss.  This simply isn’t true.  There’s nothing worse than a group of friends assuming that you no longer want to go on your annual bike-riding trip, aren’t interested in watching a football game together, or don’t enjoy shopping with them anymore.  Yes, some things may change, such as needing to use a tandem bicycle or a tether for running side-by-side or audio descriptions for movies, but these activities can still be very fun.  There are always ways to compensate and adapt when it comes to the activities we love.  I have a friend who is completely blind from RP and recently refinished his basement alongside his son, even handcrafting a beautiful wet bar, all without sight.  I’ve heard of auto mechanics who can no longer drive but still find ways to work on cars.  When someone has a talent or interest, they find  a way to continue doing it.

3. It can feel socially isolating. Think of all the social interactions that you use your vision for, from greeting your neighbor across the way to commenting on someone’s clothing.  From college students bonding over late night activities around campus to parents observing their kids’ soccer games, some of these experiences can feel a bit awkward for people losing their vision.  While we can still participate in many of the same activities, some of the commentary involved in a shared visual experience is missed.  Sometimes we feel like we have to fake “ooh-ing” and “aw-ing” over that cute or funny scene everyone is pointing at, lest we feel out of the loop.  We can’t dart from person to person at a party, spotting friends across the room.  Some of this is unavoidable, but friends and family who go out of their way in social settings can make a huge difference.  Even when we can’t spot you in public, we still appreciate being acknowledged and greeted.  For example.  I love it when a parent of someone in my daughter’s kindergarten class comes up to me in the grocery store and tells me who they are, even if I’ve met them before, and starts a conversation.  I can’t stand it when someone tells me, after the fact, that they were near me in a public setting, “Oh, I saw you at the movie theater last week,” but didn’t make their presence known at the time. It’s a weird feeling when people can spot you but you’re not able to see them.  It can leave you feeling self-conscious and awkward. When someone passes me and just says, “Hi Joy!” without identifying themselves, I sometimes spend the next 10 minutes trying to figure out who it was.  On the flip side, when someone says, “Hi Joy, it’s Lindsay!” I can ask how her daughter is or spout off a relevant comment, which is what people who are fully sighted do regularly in their social lives without even thinking about it.

4. The things we can and cannot see are sometimes confusing, even for us.  I can’t always explain why I can’t figure out what a picture that someone texts me is of but can read the print caption that goes along with the photo.  Perhaps it has something to do with visual memory of letters and how my brain fills in the gaps, even when parts of those letters are missing.  Or maybe it’s the contrast or the size and color of the photo that makes a difference.  Whatever it is, it can be difficult to explain to people and could even appear phony, like I have “selective sight”, but anyone who knows me well understands and doesn’t give it a second thought.  My younger sister, who works on a cruise ship, overheard one of her coworkers complaining about a passenger who had requested vision-related assistance but then appeared to be looking at something.  The co-worker assumed the person was lying about their poor eyesight, but my sister grew up watching her 2 older twin sisters struggle with vision loss and quickly told her co-worker that the passenger might need help seeing some things but not others.   Vision loss is not always a concrete, black-and-white picture for people losing their sight.  Take colors, for example, I can identify most colors in a general sense but often can’t distinguish between blue and green, red and orange, purple and brown, or even between yellow and white.

5. We can have “bad” and “good” vision days.  Sometimes it depends on how sunny or cloudy it is outside.  Other times it depends on eye strain, the time of day, lighting inside vs. outside, and even how many trees or landscaping are around casting shadows, causing my eyes to play lots and lots of tricks on me.

6. It’s not something most of us dwell on daily.  Gradual degeneration is a lot like aging.  You don’t look in the mirror every single day, inspecting every new wrinkle, exclaiming, “I’m getting older!” just like I don’t stare at eye charts constantly, noticing every little change.  Also similar to aging, most people don’t just wake up one day and realize that they’re a senior citizen….you realize that you’re aging at various points in your life, sometimes because of an event such as a milestone birthday, but other times you just notice yourself looking or feeling older from time to time.  Typically, vision loss is similar. There are times I’ve gone to the eye doctor and been surprised at my change in vision because I hadn’t noticed it happening to the extent that it dropped, despite the fact that I could tell it was worsening.  Other times, I notice the drop and am not surprised in the least when the Ophthalmologist shows me my test results.

7. Some of us use mobility aids like canes and dogs and some of us don’t.  There are people who have the exact same vision who move about the world completely differently. There can be 2 people who both have 19 degrees of vision, deeming them both “legally” blind, and one of them uses a white cane while the other walks around without any mobility tool.  If there is someone in your life who you feel like should be using a mobility assistance but doesn’t, it’s usually a realization they need to come to on their own, something through a few bumps, bruises and embarrassing moments.  No one can be persuaded through guilt or fear to get assistance.  Even among those who are completely blind, not everyone uses a cane or dog.  Some, for example, use echolocation.  It’s a personal preference.  A common misconception when someone begins using a cane is that they just had a major drop in their vision.  Sometimes this is the case, but many times the person is just sick of tripping over things and is ready for some help.

8. Most of us lead regular, happy lives.  After doing a presentation about my vision at my niece’s school recently, a couple of her classmates came up to her at recess and said, “We feel so bad for your aunt!  It’s so sad, and we almost cried during her talk!”  Hearing this made me feel like I didn’t really do a great job conveying how much I love my life during my presentation.  It made me decide to start my school presentations by telling the kids to smile and laugh because my story is not a sad one.  Yes, I have dealt with my share of sadness over having RP.  No one likes the idea of losing one of the 5 senses, especially the one that society places the most importance on, but sadness is definitely not the word that comes up for me when thinking about my life. Challenge? Sure.  Adventure? Yep. Fringe benefits? Yes please. Joy? Absolutely.

When you’re done crying over RP, there are so many things to laugh at. (i.e. On a recent trip to Chicago, I reached out to press the crosswalk signal button and began pressing on a man’s arm instead, much to his surprise.  You can’t tell me that’s not laugh-out-loud funny!)  While studies show that people who are blind or visually impaired do tend to have more nightmares, due to anxieties that sighted people don’t face, apparently these added anxieties do not have bearing on a happy, fulfilling life, as happiness studies find that blind people are just as happy as sighted folks.  Helen Keller sums this up best, “I can see, and that is why I can be happy, in what you call the dark, but which to me is golden. “