retinitis pigmentosa – Page 4

You Are the Light

As Joy and I collaborated about blog post ideas for 2022, I came across a meaningful story from one of our favorite authors, Elizabeth Gilbert. I noticed a physical shift within my body as the story unfolded, a release of tension and a renewed sense of hope. It was exactly what I needed at the start to another year filled with uncertainties. Sharing this story with our readers in hopes that 2022 brings fresh opportunity to illuminate your world.

“Some years ago, I was stuck on a crosstown bus in New York City during rush hour. Traffic was barely moving. The bus was filled with cold, tired people who were deeply irritated with one another, with the world itself. Two men barked at each other about a shove that might or might not have been intentional. A pregnant woman got on, and nobody offered her a seat. Rage was in the air; no mercy would be found here.

But as the bus approached Seventh Avenue, the driver got on the intercom.”Folks,” he said, “I know you have had a rough day and you are frustrated. I can’t do anything about the weather or traffic, but here is what I can do. As each one of you gets off the bus, I will reach out my hand to you. As you walk by, drop your troubles into the palm of my hand, okay? Don’t take your problems home to your families tonight, just leave them with me. My route goes right by the Hudson River, and when I drive by there later, I will open the window and throw your troubles in the water.”
It was as if a spell had lifted. Everyone burst out laughing. Faces gleamed with surprised delight. People who had been pretending for the past hour not to notice each other’s existence were suddenly grinning at each other like, is this guy serious?
Oh, he was serious.

Continue reading →

Working With Heat

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 →

When Will I Get Over This?

A familiar sensation of tightness gripped my throat as my heart pounded in my chest and the knots in my solar-plexus twisted into familiar shapes. I sheepishly gazed downward, tears streaming down my face, mumbling to Paloma, “I should have this figured out by now. Helping people improve their mental health is what I do for a living. Why does this keep coming up for me?” Paloma’s tone was soft with compassion as she gently reminded me that my experiences of living in a body that does not fit society’s standards of “normal” are not just in the past, they continue each day.

I trusted her words, knowing that she is an experienced therapist with a multitude of academic training; possessing a deep understanding of what it means to heal from identity-related grief and trauma. I understood all of this on a cognitive level, but my body felt flooded with shame at having this sudden temporary upsurge of grief (STUG). The term “STUG” was coined by Dr. Therese Rando over 3 decades ago to describe intense, unexpected surges in emotions for those who have experienced past grief or loss. While Dr. Rando used this term in the framework of loss of a loved one, I am taking the liberty of applying it to my grief related to identity/disability. Continue reading “When Will I Get Over This?” →

“Sitting Pretty” – Recovery of My Backbone

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” →

Embrace

My Grandpa Bob gave the best hugs. His embrace felt like the physical expression of “I love all that is you”. While my grandfather’s physical form is no longer with me, I now receive this type of embrace from my 7- year- old son. It’s the kind you don’t want to pull away from. The kind that makes you feel safe and loved unconditionally.

Hugs are one of the things I miss most about pre-pandemic days. I was never a fan of greeting with handshakes or high fives. Due to RP, I frequently couldn’t see the other person’s hand, so often left ‘em hanging. Totally awkward. I was recently introduced to the “COVID bow” from Rob Bell’s podcast, and I like this idea of honoring another’s presence in a safe way by bowing. But I still miss a good embrace.

Even if I can’t physically hug everyone around me, I am discovering other ways to “embrace”. I’ve been thinking about what it means to embrace all that has changed since the pandemic began. Perhaps not everything needs to be embraced. Perhaps some things, like the missing hugs, just need to be tolerated for the time being.

Yet it feels limiting to merely “tolerate” all the aspects of my new reality. For example, when quarantining and homeschooling began last spring, this new reality felt strange and so naturally I felt a lot of resistance. But as we began to develop new routines, I found myself embracing my new role as “teacher” and discovered the joy of watching my children learn at home. It was hard. It’s still challenging. But on days that I am able to reframe these challenges, I feel more at peace. Continue reading “Embrace” →

Dwell

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.

Visual description: Joy with Yellow Lab guide dog, and two daughters, walking along trail in Yosemite National Park with El Capitan looming in the distance.

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.

Visual description: Joy and Ben looking over the Icicle Creek River at Sleeping Lady Resort in Washington State.

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.

Continue reading “Dwell” →

Reflections

It’s been almost a full year since our last blog post. When the annual renewal fee arrived recently from WordPress, Joy and I discussed whether or not to pay the fee to keep our blog going. We wondered if this blog is still relevant, both for others and ourselves.

And then last week we received a short email that read. “Your blog has been a lifesaver for me as a Mom of a little one struggling with different vision issues. Please keep blogging if you have the chance”

And this motivated us to reflect on our blog. Continue reading “Reflections” →

P.S. A Mantrasong For You On Not Knowing

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

The Power of “I Don’t Know”

(Visual description: hand-drawn, chalk question mark)

When I first began accepting my blindness just a few short years ago, it unleashed a well of knowing from somewhere deep in my being. So many unknown aspects of myself as a human became clear. So many of my perceived flaws simply became things I needed to learn. And I dove into the learning. Into the knowing. I learned braille (elementary as it may be at level 1). Mobility training. Accessible technology. And those were just the physical aspects. I learned so much about myself emotionally, mentally, spiritually. And I loved writing about it all, as everything just flowed so easily out of me. I felt so proud to share what I knew because I had spent so many years feeling like I had nothing to offer. I spent so many years feeling the burden of “I don’t know”. Continue reading “The Power of “I Don’t Know”” →

Parenting Without Pity (Jenelle and Joy on Rooted in Rights Podcast)

Happy Mothers’ Day!

Parenting Without Pity is a storytelling project and podcast series where disabled parents draw from our own experience of disability as children to help non-disabled parents be better allies for their disabled children.

We are honored to be part of this project. Listen to our episode here about our experiences growing up with low vision. Then, when you are finished check out the growing catalog of stories they have published!