Last week, following the “8 Things” post that went viral, we were contacted by the amazing folks at AMI Radio, based in Toronto, for a 10-minute LIVE chat!) on Retinitis Pigmentosa. With 5 million listeners, these guys don’t mess around! Nearly, the hosts had done their research on our site, resulting in some fantastic questions! Joy did the interview, but they still found a way to include a few sound bytes from Jenelle’s “Thank you notes” Enjoy!
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. “
by Roja Thomas (Joy’s guide dog)
When I wake up in the morning, I run in circles 90 mph until I almost fall over (don’t judge). Joy and her kids laugh really hard when I do this, and hearing their laughter makes me prance around the house like an even bigger maniac. I love when Joy’s kids are home, and especially when they have lots of friends over after school. There’s nothing I love more than a house full of rowdy children. Except when one of them pulls my tail (true story ahead!). Continue reading
I’m thrilled to introduce one of my newest blogger friends, Stephanae McCoy from Bold, Blind, Beauty. This post could not have come at a better time for me. I was just starting the dreaded task of freshening up my closet in honor of the new year when Steph shared this post with me. These are tips I definitely needed!
Wardrobe Woes? Conquering the Chaos
by Stephanae McCoy
Every day it’s the same drill: You shut off the annoying alarm, contemplate getting up, contemplate calling off work, get up, put on the coffee, use the comfort station (fancy description for toilet), take your shower, contemplate calling off work again, consume first cup of java, do hair, do makeup, inhale deeply, then open the closet.
It’s full of all sorts of clothes, yet you still have not a blessed thing to wear. “What to do?” you ask yourself for the millionth time, as you once again contemplate calling off work one last time. Nothing, absolutely nothing, is gonna work today. “I hate my wardrobe!” you mutter as you angrily stomp away to grab another cup of coffee while you think about what to wear.
If this situation sounds vaguely familiar you can rest assured this is a global phenomenon faced by women and yes, men, the world over. There are many reasons why we find ourselves in this predicament but today’s focus is going to be on how to rectify the issue and it’s gonna take some fearlessness. Are you ready? Let’s do this!
Before diving into a full-blown evaluation of the contents within your wardrobe it’s helpful to have an end goal in mind. You can ask yourself questions like:
- What is it I’m hoping to achieve? Am I just clearing things out to make room for more stuff? Do I just want to be more organized?
- Where am I now or where do I hope to be in my career in the next 6 months? (For example if you’re a news reporter for a local station who doesn’t provide you with a wardrobe then you’re likely going to require more selections than the average consumer).
- If the long-term goal is a minimalist approach how will I be able to sustain the system I put in place? In the future for each new garment I buy am I planning to get rid an equal amount of items I currently possess?
After you’ve answered these questions begin the assessment in your closet by taking out all of your go-to pieces and set them aside. This is easy because you constantly use all of these things therefore they are within reach.
You’ve Gotta be Ruthless
Go back to your closet and remove the remaining items, one piece at a time to decide if each will be tossed, donated and/or sold. It isn’t easy but this is where you have to be brutally honest.
Remember that gorgeous jumpsuit you bought two years ago that you just had to have but never wore? Well here it is, in pristine condition (with tags even), hanging there just as lonely and dejected as an extrovert in forced solitary confinement during spring break.
Then there’s those fabulous skinny jeans that are just a wee bit snug (originally retailed in the triple digits but you scored them for 50 bucks), every time you look at them they scream at you LOSE weight!! Who needs psychological abuse from a pair of jeans? Send them packing because here’s the thing, you understand that looking put together means wearing clothes that fit well.
Bottom line, you’re going to give, sell or toss the remainder of the closet. Yes, there can be an emotional attachment to the things you own, so to assist you in getting through this process it’s important to be objective, honest and do not linger over your decisions.
Do the setting aside of the go-tos, toss, donate and/or sell routine with your dresser, chest of drawers, armoire (wherever you store clothing). Depending on the amount of garments you own and how dedicated you are to change, this could take a few hours, days or (and I shudder to think about it), weeks.
Immediately toss the dated, damaged or otherwise unwanted clothing. You now have two categories left: sell and donate.
A word on selling: When you opt to sell your clothing there are several options available:
- You can do it online on your own through sites like ebay, Tradesy or Swap
- A brick and mortar consignment retailer like Plato’s Closet, 2nd Time Around (online too) or Consignment Pal Resale Directory
- An online consignment retailer who takes care of everything ThredUp, My Girlfriend’s Wardrobe Consignment Store, Delvage
If you are going to be selling any of your clothing to a consignment retailer, you’ll want to check their policies on acceptable items (some will only accept designer labels). Recently I chose to sell some clothing to ThredUp and because of the quantity of items, I took pictures (for my records) of each piece prior to shipment.
Okay, so let’s review: You’ve tossed the tossables, bagged the sellables and by now are packing up the donatables.
Remember how I said we would look at your go-tos in a bit? Okay, now’s the time to appraise your favorite clothes. Do they still fit well? Could they use some altering? Are they worn or damaged due to wear and tear? Ultimately you want to see what needs to be replaced and act accordingly.
If you keep only those things that you love you will be getting more value out of your investment. Plus, the added bonus of feeling fabulous is priceless!
I pride myself on being able to do things just as well, if not better, than fully sighted moms. I blog about how much confidence I’ve gained with my new guide dog and other blindness-related training. And I speak at schools about how I don’t let my failing vision get in my way, especially when it comes to being a mom. .
So, of course, when my 5 and 9-year-old daughters asked to go to the city for the day and my husband couldn’t accompany us, I didn’t hesitate to say yes.
With my new Uber and Lyft apps, I figured transportation would be even easier than cabs, especially since I’d had such good luck with both of these ride services in the burbs.
I’d gone to the city twice with my guide dog, Roja, by myself, so I figured adding a couple kids in tow wouldn’t make a huge difference. And for the most part, it didn’t.
But the thing about kids is that they have a lot of requests. They get hungry. They want to go skating. They have to use the bathroom. They like to buy things. They enjoy exploring. They like to play at city parks in January and don’t realize that they’re nearly frostbitten until they’re nearly frostbitten. You get the idea.
The train ride to the city was a breeze, but as soon as we set foot into the bustling Windy City, Calm, Together Mommy was replaced by Anxious, Frazzled Mommy.
And so begin my confessions:
#1 – I confess that, while fumbling for the soap dispenser in the public restroom, I poked an oddly placed outlet instead, nearly electrocuting myself (note to self: do not wet hand until after locating soap).
#2 – I confess that, after Lyft’s GPS pinned our location incorrectly, I couldn’t explain to the driver on the phone where to find us, because I had no idea where we were (fortunately, a frantic mom with a guide dog calling out, “Excuse me! What cross street am I on?” elicits a nice response from passerby).
#3 – I confess that I did a little dance with a blind guy on the street corner, me not seeing his cane and he not noticing my guide dog. It was only later that night that my 9-year-old informed me I’d tangoed with a blind man.
#4- I confess that I got stuck in a revolving door with my guide dog (I must’ve missed that lesson during guide dog training?).
#5 – I confess that I knocked over a display at the American Girl Store (it probably needed some spiffing up anyhow, right?)
#6 – I confess that I couldn’t get Roja to get out of an Uber car and that the frustrated driver had to push her out.
#7 – I confess that I paraded my daughters to the wrong end of the train station on the way home and that we almost boarded an Amtrak to Kalamazoo.
#8 – I confess that I bought an entire bag of donut holes at the train station and binge ate them on the ride home.
#9 – I confess that I didn’t notice Roja’s tail was sticking out in the train aisle until it got stepped on (when a woman is focused on her donuts, attention to detail wanes).
#10 – I confess that, despite all of the above, I’d do it all over again. I’d rather be a clunky mom out in the world than a smooth one holed up at home.
Many of us spend the final weeks of the year in a whirlwind of plans, often leading to stress. And after shouting “Happy New Year!”, we let out a long sigh, in an attempt to release the stress from the previous year. We take a deep breath, and hope to breathe in a new sense of purpose, balance, and joy.
Some of us make new year’s resolutions, and join a gym, or throw out all the crappy food from the pantry. While others write down goals, hopes, and dreams for the coming year.
Most years, this is my pattern, too. I try to “get through” the holidays, and then regroup in January. But this December, I did things a little out of order. I still bought Christmas presents for my loved ones, attended holiday gatherings, and watched endless Christmas movies while wrapping gifts. But just when my busy month was getting started, and I began feeling anxiety between sips of eggnog, I made a conscious decision to carve out daily me time. Continue reading
I am thrilled to introduce you to Giselle, a college student from San Diego, who I met during guide dog training. She graduated with her guide, Museli, the same day I graduated with Roja, and I have hilarious memories of our weekly trips to Sephora, Ulta and the Mack counter during our 2 weeks of training in San Rafael.
Our fab Resident Advisor., Mick, drove us to whatever stores we “needed” to go to, along with our tagalong classmate, Dale, who was basically there to provide comical entertainment. The image of Dale and Mick spraying different colognes in Ulta while guessing the name of each scent, along with Dale unknowingly walking behind the checkout counter as if he were an employee still makes me laugh out loud. Continue reading
Many of you who follow Doublevisionblog on Facebook see all of Roja’s updates, but for those who aren’t Facebook fans, here are a couple recent posts and pictures that include Roja.
December 1st, 2015
December 1st started out rough for Roja’s household, beginning with an ER visit at 1:30am after months of my 9-year-old’s off-and-on stomach issues culminated into a scary mess. Fearing appendicitis, after talking to Lucy’s doctor, my husband took her in while I stayed with our sleeping 5-year-old. Not able to sleep, I paced the house and finally knelt on my knees in my bedroom. Updates from Ben were scarce, and I finally called his cell in desperation, just to hear my baby screaming hysterically in the background as the nurses poked her for the 8th time trying to find the right vein for the IV. I quickly hung up the phone and sobbed, wanting to be there with her and also not wanting to hear or know any of it. My nerves got the best of me and my body began shaking uncontrollably.
And that’s when I heard the whack of a tail inside the dog crate next to me. Realizing Roja was awake, I opened the crate and she ran out and nuzzled into me with the fiercest hug she has ever given me. The time was 4am and the people in my life who would normally bring words of comfort were all sleeping, so my nerves were calmed by wags of comfort instead. I was able to doze off for several minutes before the next update. CT scan showed no inflammation near the appendix and the IV was replenishing fluids. Of course, in true ER fashion, the full test results took hours to come in and she wasn’t released until late morning.
So this morning Roja and I set off on our 5 block walk to Walgreens for homecoming supplies, aided by my favorite 5-year-old helper who had convinced me to keep her home from school to wait for big sissy. Our main mission was carpet cleaner and more paper towels to help with the scary mess, as well as soup and jello. As we walked back with our small load of supplies, Roja turned at the wrong curve on the river walk, and I at first reprimanded her. But then my 5-year-old pointed out that we were right in front of a manger scene decoration that our town had just put up. I knelt down with my Walgreens bag and gave Roja a pat. I was reminded that, even on hard days like this, when you’re just a helpless mom who doubts her actions and has no idea how to help her sick child, there are still small moments to be thankful for.
I used to think my new companion was placed in my life solely to be my eyes, but I am beginning to realize that it’s more than that. Roja leads me to the important things that I tend to forget about when I’m consumed with my own worries and sorrows, like the upcoming holiday and the hope and love that it brings. That little glimpse of gratitude and hope gave me what I needed to greet Lucy, as she returned home with her battle wounds, ready to tell me her war stories while holding up her bandaged arms and hand. I could confidently face her and say, “Sweetie, we still have no idea what’s going on with that tummy of yours, but we will figure it out and get you back to your happy, healthy self.”
P.S. I can tell Lucy is truly my daughter when, between bouts of pain, she is busily writing a story about her trip to the hospital for a school assignment tomorrow. #thatsmygirl
I’ve always loved fashion, and I always will. From trendy mishaps like the Blossom-inspired hats of my tween years, to the time I co-owned and operated Mapel Boutique, fashion has been an important part of my life. But as my vision continues to deteriorate, I’ve often wondered how my relationship with fashion will be affected. Can people still love fashion without sight? After chatting with fashion diva, Joy Ross, I know the answer is absolutely positively YES. Not only is Joy Ross adorable, but she embodies everything I love about fashion – a strong sense of self expression and effortless style.
I swear Apple isn’t paying me to say this, but this device seriously is changing how I watch TV and it will get even better in the future. Plus, my kids (AND husband) love the games!