Hello DoubleVision friends. We typically try to post an informative piece about Retinitis Pigmentosa and/or blindness during the month of October in honor of Blindness Awareness Month. Our good friend and fellow RP-er, Keith, recently shared this New York Times video about RP, and it’s honestly the best portrayal we’ve ever seen, and we love the visual simulation of what people with RP tend to see. We’d love to hear your thoughts on the video as well.
It’s hard to believe, but we’ve been sharing stories on Doublevisonblog for 11 years now! Due to life, some years included more sharing than others. But every year, no matter the amount of posts, we’ve grown from processing our stories aloud and connecting with readers. As a result, we’ve met some of our closest friends, chatted on podcasts, been recruited for reality tv shows (which, in retrospect, thank God did not pan out), met with families who have children with RP and maiden-voyaged retreats with the amazing Daring Sisters. Like life, Doublevisionblog has ebbed and flowed through various seasons, and as we reflect on the past 10 years, there is a sense we are on the precipice of a new season.
What does that mean?
We’re not exactly sure, but here’s one idea: Extending our support beyond blog posts to some small groups of connection for emotional support for people with vision loss and their families. We’ve created a short survey to gauge interest in these groups. Please click here to complete this survey, and if for any reason you are unable to fill this out, you may email mail@doublevisionblog.com.
And now, a quick story from Joy:
I did something completely out of my comfort zone yesterday, and I’m hoping many of you will benefit from it.
I recorded “Go Joyful SEL Workout”
What is that?
Well, it is basically a 30ish-minute workout that takes listeners through a progression of pop songs overlayed with some insights to move our minds and bodies through the emotional highs and lows of being in a body. I’ve referred to my daily “Go Joyful” routine in recent posts, and it is basically like your morning cup of coffee. Or in my case, my morning cup of warm lemon water. It’s funny how an action that you spontaneously begin on a random day can morph into a daily habit that your well being depends upon.
It all started the summer of 2020, while I was staying with my parents when we were between houses, and the world was very much shut down. My mom came home one day with this rickety old elliptical that she had bought from a garage sale for $50 and placed it on the back patio. I created a playlist of songs that make me feel happy, which resulted in a lot of Taylor Swift songs. As I listened to the songs, I noticed they each had something to teach me, and over time, I began arranging them in an order that allowed me to process some challenging storylines and emotions that were causing me a lot of anxiety.
While the playlist of songs is something I listen to with earbuds, the internal dialogue has always just been, well, very internal, and definitely not anything I ever imagined sharing aloud with others. But then a couple months ago, I was in a silly mood and pretended I was teaching a workout class and realized I have a lot to say. It was as if all my years of studying growth and emotions through books, podcasts and self reflections were pouring into the workout.
I started wishing I had students I could teach, especially those with disabilities such as vision loss. And then I turned my head to the right side of the garage and remembered my eliptical is situated directly next to my husband’s recording studio. “Hey babe,” I said, “how hard would it be to record an audio workout that I could share with our Doublevisionblog community?”
“Piece of cake,” he said.
Actually, that’s what I wanted him to say. Instead, he launched into this two-month long debate about whether I could legally post anything with copyrighted music and presented me with several hundred options on the various ways to record such an audio workout. In the end, I sat down yesterday on a fuzzy yellow chair and spoke words into a very professional-looking microphone while wearing large headphones with crystal-clear sounds of Taylor Swift and crew. Thus was born “Go Joyful SEL Workout”.
Due to copyrights, this isn’t something I will sell or even post. However, I can share the link via email with anyone who would like to give the workout a try. Simply add your email address to our main list here. If you already subscribe to Doublevisionblog, you can send your name and email address to mail@doublevisionblog.com and title your email “Go Joyful SEL Workout”.
I have also commissioned Jenelle to create a yoga cool-down that can be done after the workout or anytime you’re in the mood for some calming movement. So once Jenelle records the cooldown, we will email both the workout and cool-down links to anyone from our mailing list who would like to listen. We only ask that you do not post or share the link. If you have a friend or family member who you think would benefit from this, you can give them our site address or email in order to request the link personally.
Is there anything you need? Whether it’s specific words of encouragement, posts on certain topics and/or resources, we’d love to hear from you. Feel free to leave comments below or to email mail@doublevisionblog.com.
Note from Joy and Jenelle: The following post was written by our mom, Judy, in response to Joy’s last post, “Getting Lost: What My Mama Taught Me”. Unbeknownst to us, our adventurous mom “faked it till she made it” and has some insightful reflections to share as a result. ‘Judy, of course, has double experience parenting children with vision loss, and now that we twins are all grown up with children of our own, she has plenty of hindsight. Judy is also an expert in Early Childhood Education with over 30 years of experience as both a preschool teacher and director.
(Visual description of photo: Judy and friends hiking in the mountains)
It’s interesting that I have the reputation of being adventurous and a risk taker because… it’s all a scam.
I’ve never been comfortable with the unknown. I’m a firstborn female of nine children; I Had to be the ‘guide on the side’ with my mother. I had to have a travel plan. I had to ‘be the map.’ I had to know exactly where I was going at all times, to lead others. Or so I thought.
And if I didn’t, I chose not to move forward. I am Absolutely terrified of being lost, literally or emotionally. The fear has stifled my creativity and wanderlust many times in life.
Last week I had a truly enjoyable adventure hike at Ancient Lakes, an area richly formed by glacial and volcanic movement, in Washington. My joyful friend as driver had GPS, and my educator friend, the navigator, grew up in the mountains here, and knows every peak and valley. All I had to bring were snacks and a great attitude. I was a happy hiker, relaxed and confident. Because I trusted them. Yes, There was some risk; we almost stepped on a rattlesnake, and ventured close to a cliff overlooking a water fall, but I always felt safe because they were leading me. As I hiked, I reflected on Joy’s post and all of the unchartered territory my husband and I have navigated over the years of parenting.
I do recall feeling lost at times, and so I thought it might be helpful for those parenting children with vision loss to read some tips I learned along the way.
In true firstborn style, I googled “Tips for when you are lost.” To stick with the metaphor of being on an adventure.
In the 80’s we didn’t have the worldwide web to Google anything for information. We didn’t have satellite dishes for “GPS” health. Intuition was our first ‘satellite dish.’ At age one, we Wondered why Joy and Jenelle were so agile going up down and down stairs and yet bumped into things going around corners and in un-predictable areas. At age two we wondered how they could so quickly and expertly learn how to ride a bike and yet, not see barriers. Soon enough, the pediatrician, eye doctors, then finally the expert Dr. Gerald Fishman at the University of Chicago were our ‘satellite dishes.’ Then the school district, With their unending list of experts; the vision itinerant, the Special Ed Director, the Social Worker, the Psychologist, the teachers, the principals were our ‘satellite dishes.’ I listened to everything they told me to do. I became a ‘dutiful tourist’, Following all guidance at IEP(individual education plans) that guided their education. Sigh. So. Much. Paperwork. I needed a new file cabinet. Remember, however, that you and your child are experts on your family’s needs and that you also have your own satellite intuition as a parent that no expert can replace.
“Stop”: Wandering aimlessly will only make matters worse. Stop and stay where you are. There were many times as parents of VIPs that we had to be “OK with the ‘unknowing’ and sit with the fear of having no direction, no guidance. With the first knowledge that it’s a degenerative eye disease and our energetic frolicking girls would slowly lose vision, we were devastated for them. We grieved within. We hid it so that we would not ‘lose our way’ in parenting. We didn’t talk with them about it. Or the reverse, Tense awkward conversations as they matured.
“Think”: Try your best to not panic. Think things through before you waste your energy trying to do anything.” As any parent knows, that is nearly impossible. We want answers and we want them now! We don’t want our children to ever stumble. We don’t want them injured on the journey. Yet, I encourage you take the time to reassess regularly.
“Observe”: Look at what’s around you to see if there’s anything near that can help you.” We observed what was difficult for Joy and Jenelle, And also what they enjoyed. We observed when they needed extra help and when they pushed us away. It was a daily nuance, an hourly rassessment, as they grew older, more verbal, and developmental shifts happened. What teenager wants a mom around for any help? We miscalculated or totally misread interactions, ‘blew a tire’ more times than I can count., over compensating and mis-communicating, anticipating instead of actually asking what they needed.
“Plan”: Figure out how to find what you need.” There were times we honestly did not know what we needed.’ I read every article and scrap of paper the doctor or school district would give me, which wasn’t much.
I see this as a metaphor of ‘finding a mentor.’ Sadly, we never did find mentors. We had no parenting group. We had no parents in the district that we connected with. We were solo adventurers. All the help I got was very clinical and educational. It would’ve been wonderful to have mentors on the journey. We could have created a group. Hindsight is 20/20 on a journey. I would add, though, that my extended family have been truly helpful as ‘guides on the side,’ giving helpful directions, Without hindering or overprotecting my daughters.
It seems like a given, yet So many of us are so full of pride and grit (and we’ve been conditioned to ‘not bother people’, that we forget to ask for help when we are lost.) Most People are more than willing to help along the way. I didn’t ask for help a lot and I regret that.
Last weekend my grandkids and I saw the play “The Wizard of Oz.” Glinda’s compassionate comment to Dorothy, as she realizes that she can finally get back to Kansas, resonated deeply with me:
“You always had the power, my dear, you just had to learn it for yourself.”
My daughters have the power within. I don’t have to be a perfect guide. I just have to be by their side. Because, after all, whether you’re flying over Kansas or hiking in the mountains… “Adventure is a state of mind-and spirit.” – Jacqueline Cochran, American pilot who broke the sound barrier.
Dedication: As Mother’s Day approaches, I’d like to dedicate this post to our beautiful mom, Judy. While many people wait to eulogize their loved ones after they’ve passed from this earth, I like the idea of letting people know the impact they’ve made while they’re very much alive and well! And what better way to do this than through story? I love you, mom! Happy Mother’s Day!
I have been lost many times in my life. The first time I can remember feeling truly lost, that is to say to the point of trepidation, I was in 6th grade wandering around the historic district of my hometown in the middle of the night.
Jenelle and I were at a slumber party, and one of the girls had the brilliant idea to sneak out to go pranking, which basically amounted to a gaggle of girls parading across the nearby college campus, each armed with a roll of toilet paper. We never actually had the chance to T.P any houses, as 10 squealing middle school girls carrying rolls of toilet paper through a well-lit college campus was as sneaky as a teenager sounding a loud alarm as they climb out of the window.
“What do we have here?” A student security guard asked as we all began to run, dispersing in all directions. “Toilet papering…..how cute!” The guard roared sarcastically.
I ran and panted and ran some more until I knew was safely away from both the campus and the guard. It was only then that I realized I was all alone. And, as if on cue for the moment, it began to rain.
Having night blindness, I couldn’t decipher where in the neighborhood I was. I searched frantically for any kind of recognizable landmark in this neighbhorhood that I had grown up in and walked regularly to school in, but the evening sky had transformed it into an unrecognizable world.
Since there was no such thing as a cell phone in 1989, all I could do was walk up and down the streets, tears streaming down my face with the rain, thinking about how very stupid I was to have not kept up with the other girls and how worried I was that my twin, who had also been with us, may also be out there, lost. I wandered the streets for what felt like hours, and slowly the initial terror of realizing I was lost subsided, and I honestly didn’t feel as afraid as one would think.
Reflecting on the scene of my young self wandering the darkness alone at night, I recall a underlying assurance that I wouldn’t be lost forever.
I credit my mom for this, as she raised me with a very counter-cultural view of getting lost. If we were driving somewhere and she didn’t know where we were, which seemed to happen quite often in the years before Google Maps, she would always say, “We’re on an adventure!” If my mom said this when we were running late, which also happened quite a lot with 4 of us girls to wrangle, this phrased irritated me. I didn’t want to be on an adventure. I wanted to be at my destination. On time.
Fast forward to April 2022, and mom’s words pop into my head as I wander through wooded paths with my guide dog, Roja, trying to find my way to an Earth Day fair where my husband and daughter are waiting for me, and I am very much on an adventure.
I am proud of Roja for guiding me through busy streets and onto the pathways, but I have just received a call from my husband, who has been watching my little GPS dot on his phone, telling me I should have turned left at the bridge. This would be helpful information except that I remember crossing two bridges. I am fairly certain they were two different bridges, not the same bridge twice. But what if I was just circling?
I reverse directions and tell Roja to “hop up”, the command given when a dog is distracted, and since there are all kinds of new, delicious smells in the woods, she is very distracted. We’ve been a team long enough, however that she tunes in when she senses I’m distressed or in a hurry, so she becomes highly focused and leads me with stubborn certainty to the left, and it’s only as the tip of my left foot is touching the surface of the bridge that I realize she has led us to the exact right spot. I am tempted to shout to anyone within ear shot “Look what my perfect guide dog just did!”
But as we exit the bridge she leads me with just as much certainty to a nearby pole and begins licking it. “Hop up, girl!” I redirect, and we are on course again.
At least I think we are headed in the right direction, but I am not certain. As the path winds, I think about how often in my life I feel uncertain. Did I choose the right career path? Am I parenting my daughters the right way? Should I have avocado toast or steel cut oats for breakfast?
I ponder these questions and inhale spring air. I think about a good friend who has told me she feels lost in life, and it sinks in how often we as humans encounter this lonely feeling.
I look down at my gorgeous yellow lab and I think about all of the many pathways she has guided me on, and I feel like dancing. I think about how I’ll probably need to retire her in the next year, and I feel like weeping. I think about my peacemaker mom who taught me to take risks and trust the journey. I think about how very present she is in my life and how, if nature takes its typical course of parents passing before children, I won’t always have her physically with me. The thought shortens my breath, and I have to remind myself to inhale and exhale. And then I hear something from a distance. I realize it is music from the Earth Day festival and a sure sign that I’m on the right path. It makes me think about how we all need little signs from time to time to remind us we are on the right path, just like the shouts of my 6th grade friends as their dramatic search party discovered me wandering the streets back in 1989. I think about how my mom has given me those reminders throughout my life and about how I can pass those reminders on to others.
So if you’re feeling a little off course today or this week or maybe for quite awhile, know that you are not lost. You are merely on a grand adventure called life, and there are no wrong turns.
Over the past 10 years of blogging and meeting with others with low vision, there is one topic that comes up again and again. It comes up most often around holidays or social gatherings but sometimes at the workplace. It comes in the form of many different questions, stories and laments, usually surrounding not feeling helpful or useful, but it basically boils down to one word: worth.
I was discussing this with my uncle Kevin recently, and he wisely pointed out that the feelings of unworthiness are experienced by all humans, not just those with vision loss or disabilities.
We’ve addressed this topic peripherally, such as in holiday posts like “Blind Survival Skills in a Bustling Holiday Kitchen”, but after a recent evening at a friend’s house, I came face to face with it yet again.
Continue reading “Frequent Feelings: One of Our Most Requested Topics”
“We are total badass mountain women!” I called to my aunt Beth as she turned to watch me triumphantly lift one clunky snow shoe over a thick log blocking the trail, my second foot coming in for a shaky landing beside it. We both laughed, knowing we probably looked nothing like badasses trudging our way through tattered trails layered up in winter gear like mummies. But sometimes internal feelings are more important than the external reality.
If you’ve never been snow shoeing, picture wearing giant flippers over your boots, only the flipper parts aren’t floppy or malleable and are located in reverse, trailing behind your boots like slight paperweights with deep grooves that dig into the snow to keep you from sliding. It amounts to quite the workout, as you must lift your giant, backwards clown feet up high in order to avoid the snow shoe attaching to random branches, and when walking slim paths in which one foot is placed narrowly in front of the next, a snow shoer must take extra care not to step on the back of their own snow shoe, thus tripping oneself. And yes, I know these details from several failed attempts at badassery.
Continue reading “Midwinter Break Musings on Badassery, Vulnerability and Strength”I’m hot. My face. My throat. My chest. The heat seems to be traveling down my body. Or maybe up? It’s hard to source because the heat is consuming me. Everyone is waiting. I feel their eyes through the computer screen. They are waiting for me to click a button. And I can’t find the button. My mind knows exactly where to click, and it should take two seconds. But my eyes aren’t cooperating. It’s taking two minutes and counting. It feels like two hours.
“Joy, if you go to Participants, all you have to do is click on the arrow next to the ‘More’ button, and arrow down to ‘Make Host.” Then, I’ll be able to share my screen,” my Regional Coordinator says as if I’ve new, as if I don’t run virtual meetings regularly five days a week.
“Yep, I’m working on it,” I say like responding to someone who asked me to take two simple steps toward them as I stand still, staring at them.
“You can also just right click on the box where my face is.” My RC sounds stressed, probably regretting making me begin the meeting, so that I could lead us in a relaxing mindfulness exercise. I thought she was going to make me “Co-host”, but for whatever reason, she clicked on “Make Host,” and now the only way to continue with the dozens of slides she needs to share within a tight timeframe is for me to click a button.
My RC is unaware that what can be a simple walk to the corner, to me sometimes feels like a hike up Mount Fuji. I manage to drag my giant mouse icon to the “More” button arrow, and I arrow down to “Make Host.” I sense relief. Then as I move slightly off-course, the drop-down options disappear. I nearly reached the mountaintop and it feels as if someone has whisked me back to the base.
Continue reading “Working With Heat”I’m finally on summer break, after a long school year during an even longer year, and I return to writing as one returns to an old, neglected friendship. A little timid and sheepish with guilt over the time spent away mingled with the eagerness that only hope and steadfast trust can produce.
I’m playing hooky from the virtual yoga teacher training Jenelle and I are taking together to spend a little time with doublevisionblog this morning because I feel like I have things to say. My thoughts and words feel like they are awakening from a COVID coma, as I strain hard to strengthen their atrophied state, stretching and breathing through the discomfort.
But I’m not alone. My physical therapists come in the form of books, other writer’s stories reminding me of my own, and I read them with the voraciousness of someone who hasn’t eaten in many months. Yes, I’ve read books over the past year for book club and lots of words for work, but there’s something other-worldly that occurs when you get fully lost in a book, and time itself bends , unaware whether 8 or 18 hours have passed as the words pour over you in waves of recognition. In the first 2 weeks of my summer break, my family and I have travelled to 4 states, and I’ve finished 4 books, one for each state, each one aiding in the recovery of a different part of myself.
The first book I finished, “Sitting Pretty: The view From My Ordinary, Resilient Disabled Body” aided me in reclamation of my backbone.
This memoir is a NYT bestseller written by a disability advocate living with paralysis. The book was actually recommended by a good friend from the “Daring Sisters” retreats Jenelle and I have attended and is written by her cousin, Rebecca Taussig. It is a collection of essays about her experiences growing up with a disability and the complications of kindness and charity, intimacy and ableism. If these sound like heavy, somewhat-depressing topics that aren’t exactly light summer reading, that is half true. As I read Rebecca’s words, I grappled alongside her over the complexities of living in a body “that has been sent to the margins”, as she writes in her dedication. And yet her coming-of-age stories with references to 80s and 90s teen girl icons like Christy Turlington and teen magazines weave in a lightness that had me nodding, smiling and chuckling to myself at times.
Continue reading ““Sitting Pretty” – Recovery of My Backbone”
For much of the summer, my family and I have been without a dwelling. This is not to say we haven’t had homes. We have made a home wherever we have landed, and each place has taught us something. In fact, my singer/songwriter husband, Ben Thomas, even wrote a song depicting the essence and lesson of each place, from the RV campsite on Morro Bay to the sheltering trees of Yosemite to the resort-style campsite at Mt. Shasta to the windy Oregon coast to the 2nd floor of my parent’s home in the Cascade mountains.
The 4 of us humans, 5 beating hearts including Roja, are a tight-knit little unit that has bonded together over the past 4 years as we navigated new territory in SoCal after leaving our established lives in the Midwest. I like to think that offers us some security as we try to ground ourselves during these very uncertain times, both in our personal lives and the world.
I’ve been thinking a lot about the word “dwell”, both in terms of the first definition usually listed, “live in or at a specified place” and also of the 2nd definition “to think, speak or write at length about a particular subject, especially one that is a source of unhappiness, anxiety or dissatisfaction”.
I have somehow mastered the incarnation of the latter definition, as I descend from a long line of ruminators, dating at least as far back as my beloved grandpa Bob. But probably much further. Based on the lamentations of poets and storytellers over the past couple thousand years, rumination is more of a human condition than a genetic defect or anomaly. Some of us just practice it more than others.
As a person living with RP, the opportunities to practice dwelling present themselves quite often.
The most head-spinning practice opportunities seem to arrive right when I’m most relaxed, when my guard is down and I’m least expecting it. One such encounter occurred a couple weeks ago as my husband, Ben and I celebrated our anniversary.
Thanks to a gift from my 3 generous sisters, we were sitting on the outdoor deck at an upscale restaurant, getting served plate after plate of mouth-watering gourmet food. Besides the occasional joking and chatting with our bubbly server who I imagined smiling underneath her mask, we were surrounded only by the sounds of the nearby rushing river and the gentle rustling of trees kissing in the breeze (okay, and also intermittent slurping sounds from the lone woman sitting at a table 6 ft. from ours. Very strange and distracting.)
Amid this (mostly) quiet setting, Ben and I were relaxing like 2 newlyweds without a care in the world. And considering there are so very many cares in this world right now, it felt a bit like hitting “pause” for an hour or so. Bubbly server came with our next course— soup and salad. I picked up my glass of water to take a sip, and was careful to set my glass down gently, in the same place it had been. What I didn’t see was that the server had set my bowl of corn bisque basil soup in the exact place where my water glass had just been, so I had set my entire glass of water in the middle of my soup.
As a followup to last week’s post on “The Power of ‘I Don’t Know’“, my very talented husband created this Mantrasong that I think Doublevisionblog readers will find meaningful.
Ben’s been creating and posting these videos weekly, so be sure to subscribe to his new YouTube channel and check out the rest of his music.
LYRICS —
It’s okay to not know
It’s okay to let go
It’s okay to un-know
It’s okay, the unknown
