Category: Inspiration

Having a Hard Human Day? Remember the Birth Date Line

Image description: a sunset over a landscape with a complex network of reflective waterways. In the background, dark hills or rise against a gradient sky, transitioning from golden yellow to blue (Photo by Jeremy Bishop)

In recognition of Mental Health month this May, Jenelle and I helped facilitate “Stronger Together: Our Stories Matter”, a conference in Washington state for teens with sight loss and their families. One of my favorite parts of the weekend was the activities led by the Northwest Association of Blind Athletes (NWABA). I’ve always avoided Zumba workouts, so I was delighted to find that Zumba dance classes are actually fun and easy to follow with accessible instructions. I was also surprised by how sore my psoas muscles were the following day after some seemingly simple salsa combos. High knee core twist anyone?

They also led the youth in a game of bocce ball. My husband’s family is Italian, so I’m very familiar with the game and wondered how the players would aim for the small pallina ball, much less know which team’s ball was closest to it. NWABA’s modifications definitely reinforced my belief that humans are inherently ingenious when it comes to adaptations.

The game included a beeping pallina and a tactile map of where each ball was located in relation to the pallina. After each turn, an Orientation and Mobility Instructor could rearrange the tactile pieces in order to mimic the arrangement for any players who needed it. Bravo, NWABA!

One activity they led on the very first evening of the conference, however, spoke to me on a deeper level.

Our task was to arrange ourselves chronologically by birthday (not year, thankfully!) from one end of the hotel banquet room to the other. With over 50 participants plus several interpreters for our parents who were mono-lingual Spanish speakers, this was no small charge.

As we began to meander around the room, I noticed a young college student who was new to blindness standing still, so I asked if she wanted an arm. Ironically, we found that her birthday was right after mine, so by taking my left arm, she was already in the exact place she needed to be in the line. Once we arrived to our proper places, she continued to hold onto my arm and shared a bit of her story, which for confidentiality purposes will remain in the banquet room. I will say, however, that the experience of grief is a shared one, and vulnerability is a gift we give to one another.

When we were all arranged in a line, the person with the very first birthday in January said their birthday and so on until we reached December. I could sense the pride in the room as every single person was in proper birthday order. As each person named their birthday, rippling down the line like an ocean wave on a calm day, another wave came over me. I had trouble naming it at first. Wonder? Awe? Connection? The thought that all of the people in the room were affected by vision loss in some way rolled over me, causing me to hold my breath for a brief moment.

There were youth and some staff with vision loss, siblings, and parents, and everyone was there to support one another. We were all at different places in our journeys. Some had been born with sight loss. Others had recently lost theirs. Some sudden. Some expected. All connected.

As I reflect on this image, it occurs to me that there is a birthday line out there for all of us humans walking this journey we call life.

Have you been betrayed by a loved one? There is a birthday line for you. Are you struggling with regret? There is a birthday line for you. Do you suffer from waves of emotions that sometimes threaten to pull you under? Yes, you too have a birthday line.

A birthday line consists of all of the many humans on this planet who are, at this very moment, sharing in the struggle that you are in. The details of that struggle may vary , and the exact way our brains and bodies process the experience may differ, but the very real emotions that coincide with being human are alike. Disappointment. Anger.. Confusion. Wonder. Contemplation. Joy. And a million nuances in between.

So, DoubleVision friends, the next time you feel alone in your shame or blame or pain, picture the birthday line and feel the connection that ripples through shared humanity. No, it won’t solve your struggle, but there is a softening that occurs when we remember our common humanity.

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” →

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”” →

4 Life Lessons Learned from 4 Decades of Living with Sight Loss

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In honor of our 40th birthdays, we’ve come up with 4 lessons we’ve learned over our 40 years of growing and living with sight loss.

Cheers to 40!

  1. Community is essential. We live in a society in which independence is highly valued and misunderstood. Going it alone is often idealized while interdependence is minimized. We value connection and we love our tribe
  2. Knowing when to lead and when to follow is part of finding your ease. Mobility for people with vision loss can bring up tricky questions like: Should i use a cane even though I can see decently well at times? Would a guide dog help me move about more quickly and easily? Should I take someone’s arm as I walk into the restaurant tonight? How should I respond when someone tries to grab my arm and steer me around or offers unsolicited help? Learning when to lead and when to follow is part of the journey.
  3. Insight is one of the strongest forms of seeing. Our society places a lot of importance on physical sight, yet when we use our “third eye” to look inward, we can see ourselves and the world around us in new and beautiful ways. It takes a little bit of silence, a little bit of stillness and a whole lot of practice to find vision in the non-physical.
  4. Dishwashers should never be left open. Our shins have 40 years worth of stories to tell.

5 Things the Online Community Taught Us About Blindness (Happy 5th Anniversary Doublevisionblog!)

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So much has transpired in the last 5 years of blogging together.  Our perspectives have shifted dramatically.  If you look at one of our very first posts, “To Tell or Not to Tell”, about whether to disclose our vision loss in public, to more recent posts about guide dogs and canes, the shift is obvious.  But it didn’t happen overnight.  And it didn’t happen without a lot of input and support from friends we met in the online community.

2011-2012:  We’re not alone.  Between our readers, Facebook groups and fellow bloggers’ posts, we discovered a whole new “blogosphere” of people with Retinitis Pigmentosa and other conditions.  It was this connection that pushed us to keep writing, keep exploring, and keep discovering new things about ourselves and the unique world of vision loss.

2012-2013:  There’s a lot more to life than going blind.  If you look at our archives, you’ll notice this is the year we took a little hiatus.  Jenelle had her second baby, Joy started working on other writing projects, and life got busy.  We took a little break from both writing and reading vision-related blogs for awhile, realizing that there are so many more aspects to our lives than vision.  But when we picked back up and started writing consistently again, we were once again greeted with enthusiasm and encouragement.

2013-2014: The blind community is as diverse as the general population. Blindness is something that crosses all cultures, age groups, genders, and socioeconomic levels.  Consequently, the personalities, likes, dislikes, hobbies, views, etc. are extremely diverse.  This was the year we really began discovering the wide array of people in the blind blogosphere.  We have had the privilege of connecting with a multitude of interesting, yet often very different friends in the online blind community, including blind active mama friends, crafty comrades  adventurous, witty intellectuals, artsy, clever New Yorkers, blind Canadian advocates, bold blind fashionistas, and let us not forget our guy-friend blogger and his amazing TEDtalk. And this just scratches the surfaces of interests, personalities and geographic locations.  IMG_3646

Even among assistive devices, people have their things; some like dogs, others canes, still others echolocation, some nothing, some braille, some hardware, some software. Under the umbrella of “blindness”, there are a select few who are in complete darkness (10 percent, like our friend and Youtube talent Joy Ross), others who have light perception, some shapes, some puzzle pieces, some just in daylight, some just at night, some large print, and even some who “drive blind“.

2014-2015:  The blind community has a strong, growing voice.  There is a growing voice in the blind community that is influencing culture.  This is the year we really started noticing an explosion of public awareness in the media: bloggers started popping up left and right (blind mamas, blind papas, blind professionals, you name it!).  These people have always existed, but it seems they have been growing in their public presence and confidence.  A major magazine, Real Simple, feature spread on blind moms with guide dogs, and reality tv producers have been seeking out blind talent.

Most of these efforts are positive and have the intention of educating the public, though this rise in media attention has created some controversy over whether people are overdoing it in regard to “inspiration”.  We in the blind community are, after all, just living our lives, and humans have a way of adapting to most anything.  It can be confusing when simple daily tasks are hailed as “amazing”.  On the other hand, there are unique challenges when it comes to sight loss, and the human capacity to overcome and move forward is, in itself, inspiring.  From our perspective, if it can help inspire others to do the same in their own lives, whatever their unique challenge happens to be, then it is noteworthy.

IMG_36472015-2016:  Shame is a common theme.  We used to think that we were the only ones who tried to hide our vision loss.  We have since discovered that this is actually a common phenomenon among people losing their eyesight.  Fortunately, amazing organizations such as the San Francisco Lighthouse for the Blind, are recognizing that this is an issue and have training, counseling and other programs available to help people get past the stigma.  “For those with changing vision, the daunting part is not usually the fear of darkness, but.the fear of admitting that you’re different.” – San Francisco Lighthouse For the Blind & Visually Impaired

 

‘Twas the Season

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 “‘Twas the Season” →

DoubleVisionBlog Fight Song

View and share “DoubleVisionBlog Fight Song” Video on Facebook

Hi DoubleVisionBlog friends! I’ve been secretly working on this video for the past month as a surprise for Jenelle. Happy Blindness Awareness Month!

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In honor of Blindness Awareness month this October, Joy shares her journey of shame, vulnerability and courage. With both humor and insight, Joy and her twin sister, Jenelle, share their stories of life with RP at doublevisionblog.com. Continue reading “DoubleVisionBlog Fight Song” →

Caged

I’m not sure why the conversation made me weep only seconds after hanging up the phone. Was it because he was calling from his room at a nursing home that I could barely bring myself to set foot in?

The content of the conversation wasn’t anything out of the ordinary. He told me how the pop machine ate his quarters and how the laundry service never returns his handkerchiefs and even lost a pair of his pants. He said he was wearing the Chicago Bears sweatshirt my mom gave him for Christmas and assured me he would never send that to the laundry. Continue reading “Caged” →