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.
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?”→
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.
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.
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.
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
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””→
(Note: Fans of the movie, “Inside Out”, I have a fun little story for you today! As you may know, the movie is based on “Internal Family Systems” a therapy model that invites you to go inward and explore how all the different parts of you are thinking and feeling. The movie depicted the parts as “emotions” like joy, anger, sadness and disgust, which is often how parts show up. In this short recap of my morning, I note the differences in how parts of me are feeling about the same situation.)
Joy, 9-year-old daughter and guided dog walk uphill toward school.
“Shall I bring my chai tea with me?” I pondered this morning (because one always uses words like ‘shall’ and ‘ponder’ at 7:15am while trying to get out the door to walk your 3rd grader to school). Anyone who uses a cane or guide dog understands the need for just ONE more hand to carry objects or hold the hand of your child since one hand is always grasping the handle of a cane or harness. But alas, there were no extra hands to be found, as my husband left early this morning and my daughter needed to pull her wheeled backpack on our 20 minute uphill route to school. Plus, I reminded myself, my daughter would not be with me on the way back down the hill after dropping her off at her classroom, so I really couldn’t ask her to carry anything extra.
It was the warm, smooth feel of the piping hot travel mug on a cool California morning that made the final decision. The mug of sweet, spicy chai with a slight boost of caffeine was coming with me. Sure, I would have no extra hand to leash cue my guide dog, check my phone (which lay snugly in my small crossover coin purse draped over my shoulders), nor press the traffic light button. And it would take some fancy handy-work to reach into my sweatshirt pocket for kibble to treat my guided dog, Roja, at corners. But having that steaming cup of tea on this gray morning would be worth it.
My 9-year-old, who transforms into a chatterbox of theories on everything from how french fries probably got their name to whether life on other planets exists, and I strolled casually up the hill, talking away. Until we were about 2 blocks from the school and realized we only had 5 minutes to make it the rest of the way. So we paused the philosophizing and started walking at a brisk pace.
After hugging her goodbye with 30 seconds to spare, Roja and I began the trek back home, and it was only then that I realized I hadn’t even taken a sip of my chai tea yet. Not wanting to waste my efforts, I decided I better make carrying it worth it and take a sip. Apparently it must be a very insulated travel mug, as the tea was still hot enough to burn my lip. I left the lid slightly open as I walked to help cool it down, splashing little bits of chai on myself as I walked. After several minutes, it was cool enough to sip (hooray!) It had also steeped for 25 minutes and was extremely strong. So I halted Roja again and took the tea bag out.
But what to do with the dripping wet tea bag? The lazy part of me was tempted to just toss it in the grass to the side of the walkway, but the conscientious part of me didn’t want to litter (plus, there were a million cars driving in and out of the school car line who could easily see me tossing trash to the side and pass judgment). Since I still didn’t have a 3rd hand to carry anything else with, I strategically maneuvered my fingers to grasp both the mug and the dripping tea bag at once. I was sure there would be a garbage can somewhere on the route home.
With mug, tea bag and harness handle in hands, Roja and I continued our walk down the hill. Until several steps later when Roja made it clear she needed to relieve. I carefully set down the mug and tea bag, lifted her harness off her and took her to the grassy area next to the sidewalk. Roja did her business and, after sniffing around for a couple minutes, was ready to work again. I picked up the tea bag, mug, harness handle and leash and headed for the stoplight, where I managed to drop the handle and hold the leash with my arm while pressing the walk signal. As we waited for the light to change, I felt my purse vibrating and realized I was getting a call. I knew I could ignore it but the anxious part of me that remembered how an ambulance came to the school just yesterday due to a playground injury didn’t want to miss the call. Again, I held the leash with my arm, fumbled to give Roja a quick treat for stopping at the corner, unzipped my little crossover purse and answered my phone. It was an ad. I quickly stuffed it back in, realizing it was time to cross the street, picked up the handle and gave Roja the forward command. Having walked this route many times, I knew there were garbage cans near the shops I was nearing but couldn’t remember exactly where.
“Roja, find garbage,” I said, not quite sure if we were that close to one. Apparently we were not, as she just kept walking. Then I remembered the garbage at the corner near the pool. “Roja right”
Finally, the garbage can was just steps away, and I could responsibly throw away my chai tea bag without littering. I dropped the leash handle for a moment and grabbed the long string dangling from the soggy mass. Only it slipped through my fingers on to the ground. For anyone with 180 degrees of vision, this little drop would be no big deal. You would simply glance down, pick up the tea bag, toss it in the can and be on your way. But for anyone with sight loss, you understand the utter frustration of kneeling down and feeling all around for something you JUST had, only to find it has vanished from existence. Seriously? Did I just walk 20 minutes downhill grasping this dripping thing so that I could properly dispose of it, only to drop it on a cement sidewalk where one of our many neighborhood dogs could come upon it and get ill from ingesting it. The irritated, impatient part of me just wanted to forget about it and walk home. Dogs eat weird crap all the time. Would a chai tea bag really be so bad?
But that annoying, responsible part of me who speaks up at the very worst times required me to keep kneeling, sweeping my hand all around me in search of the tea bag. I shifted my weight slightly to readjust and pick Roja’s leash back up, as she had started to wander and felt something under my foot. Could it be? Could this search finally be over so I could return home and get to work?
I was never so happy to feel a cold, damp clump in my hands!
I tossed it in the garbage, picked up the handle and walked home. As I walked in my front door, the same place where only about an hour earlier I had made the split second decision to bring my mug of tea with me, I took my 3rd sip of tea. “Totally worth it,” the grateful part of me thought. All other parts remained silent.
When the topic of vision loss in the workplace comes up, a discussion about suitable careers for people with vision loss typically ensues. These career options can sometimes feel limiting because we live in a very vision-centered society. Reflecting back on my past employment experiences, I have definitely not chosen visually easy ones.
This is not at all to pat myself on the back in the bravery department, as I honestly didn’t really think the visual challenges through until I was thick in the midst of them. I simply followed my interests, which is how I ended up as a foster care case manager at age 22, a position that required more driving than most UPS delivery employees. For a person without a driver’s license, that’s a bit of an issue, especially since it was before the days of Uber in a suburban setting where “mass transit” involved a fleet of soccer moms in mini vans. The position also involved transporting minors that were wards of the state, so I couldn’t exactly pick them up in taxicabs, though the cab fares probably wouldn’t have covered my social service salary anyhow. I had to get creative and ended up on trains (for the occasional urban trips), planes (for court-ordered, out-of-state sibling visits), and automobiles of individuals willing to be fingerprinted, including my generous husband!
Photo description: Joy sitting on a chair, speaking to a group of children around her on the floor in a classroom.
Eventually, my interests and sanity needs led me to the classroom, which eliminated the transportation dilemmas but of course presented challenges of its own; as there are no training handbooks for managing a classroom of hormone-hyper 7th graders using non-visual techniques in an educational setting accustomed to visual methods such as hand raising. For someone with 4 degrees of peripheral vision, spotting a raised hand in a packed classroom is a bit like playing Yahtzee: there is a touch of skill involved but mostly a whole lot of luck. Of course, I created alternative management methods, such as assigning a class “caller” or giving students noisemakers in lieu of silent hands (in hindsight, not my brightest idea, but teachers in their 20s have to learn the hard way sometimes).
Fast forward to this past spring, when I was checking my e-mail before going to bed (a habit I’m trying to break) and saw a message that made me sit straight up in bed and elbow my husband. “Oh my gosh, babe, listen to this new internal job posting!” It was for a “student support coordinator” at the charter school where I was working part time. The position said it involved meeting with parents and teachers of struggling students in order to recommend interventions. But the part that most drew me to the position was that it involved creating 504 plan accommodations for students with various disabilities.
“Wow,” my husband elbowed me back, “that sounds perfect for you. You’ve been dealing with accommodations your whole life.” He was right, and as a general education classroom teacher, I always felt a certain connection to the students who had extra challenges, though I never wanted to be a special education teacher. I’ve always identified more with students who are completely capable of doing grade-level work when given the right accommodation because it’s so similar to my own story. I can perform just as well as any classmate or co-worker when accommodations are in place.
I began drafting a cover letter that very night (hence, the reason you should never check e-mails before bed unless you plan on staying up until midnight). I notified my current director, who wrote a recommendation letter, and started prepping for the interview.
Since the school is one of the largest charter schools in California with offices in various cities, and the Director for the Support Team was in Northern California, the interview was set up as a virtual video meeting in the videoconferencing app Zoom. I had to log into it in order to meet with a team of interviewers. The virtual interview setting brought some relief, as I didn’t have to worry about finding which chair to sit in, which person to look at or whether to bring my guide dog or cane, but some challenges arose for me as soon as the interview began. My internet signal was acting up, so my voice was cutting in and out. The director suggested I call in while still keeping my screen on in order to see the documents they were sharing. My heart immediately began to race as I attempted to dial in while everyone waited. Fortunately, I had done a “practice” Zoom session with my assistive tech guy, and he had shown me how the one-tap iPhone number automatically entered the access code for me, so I didn’t have to worry about fumbling with entering a code. Simultaneously, my mind raced over whether I’d be able to see the documents they were sharing with me. I had mentioned my visual impairment in my cover letter, but wasn’t sure who had read the it and couldn’t find my words to bring it into the conversation. (Looking back, the shared screen documents seem like an obvious segue.)
Even though I’ve written posts and published articles on the benefits of hiring people with disabilities, old stories of inadequacy and blind shame surface at the most inconvenient times.
The team gave me several scenarios, which they both read aloud and put up on the screen I tried zooming my screen in but still could not read the scenarios very well, so I tried to just focus on their words even though my brain felt engulfed with fog. I took very long pauses and admitted that I didn’t even know what tier 1 and 2 interventions were! The only question I felt completely confident and articulate answering was the difference between modifications and accommodations.
My stomach muscles knotted up as I realized I was majorly stammering through my answers, talking in circles. Was I making any sense at all?
I felt relief when the interview ended but immense disappointment over how it had gone.
So I was completely shocked the next morning when I received an e-mail from the director, saying she’d like to talk about the position in more detail. It turns out that the interview team liked that I had some background in social work in addition to education. This is a very involved position,” she said, “it’s full time, and there’s a lot to it.” She suggested I take the weekend to think about it and consider the impact on my current obligations.
Had I just been offered the job?!
I mulled it over for about 5 seconds before deciding it was for me. I didn’t overthink the visual challenges that surely were ahead.
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!
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
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.
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.
Dishwashers should never be left open. Our shins have 40 years worth of stories to tell.
I come from a large extended family. I am one of 4 children and my mom is the oldest of 9, so warm bodies have never been sparse on the holidays, even after half the fam moved to the Northwest. And my husband’s family, though initially smaller, has grown exponentially the past few years, both with new littles and adopted extended members, so no shortage there either. I also come from families of doers and helpers on both sides— everyone pitches in by bringing a dish to pass, assists with food prep before the meal and form s a cleaning assembly line of sorts afterwards. Continue reading “Just Keep Tossing The Salad: Blind Survival Skills in a Bustling Holiday Kitchen”→
