We had the pleasure of joining our friend Adam Mock on his inspiring podcast, “Rescue Your Dreams”. Here’s what he had to say about our conversation. Give it a listen below and be sure to follow “Rescue Your Dreams”! – J & J
Navigating Suffering Through Compassion with Joy Thomas and Jenelle Landgraf
Visual Description: Podcast image of Adam Mock with Joy and Jenelle
In this episode, my guests Joy Thomas and Jenelle Landgraf take us on a journey of navigating life’s challenges by embracing compassion and accepting the messiness of circumstances we didn’t choose.
Joy and Jenelle are identical twin sisters, writers, and co-creators of the Double Vision Blog, where they share their experiences living with retinitis pigmentosa (RP), a degenerative eye disease. Although they face the same struggles with vision loss, their perspectives on life and how they manage their challenges differ, offering unique insights to their readers.
Through their writing, Joy and Jenelle aim to show that there’s no one “right” way to go through suffering. They believe that by sharing their personal stories and focusing on compassion, they can help others find strength in difficult times and navigate their own hardships with grace and understanding.
Their mission is to encourage readers to embrace the imperfections of life, using compassion as a guide, and to foster deeper connections through shared experiences.
Photo Description: A sweet moment between Lucy and her mom, Joy, on Lucy’s first day of first grade. Lucy, with her curly blonde hair and a gentle smile, wears a purple dress with white stars and a checkered backpack. Joy, smiling brightly beside her, leans in close, her blonde hair pulled back. In the background, a school setting, filled with excitement and new beginnings.
Grief comes in all shapes and sizes, and for all sorts of reasons. It is, at its most basic level, our response to loss. At the heart of loss is change. I once heard someone say that we as humans equally crave and fear change. I experienced this in 2006 upon the arrival of our firstborn, Lucy Joy.
I was, like most first-time moms, completely overjoyed and completely overwhelmed. I was also surprised by something no one had warned me about and a bit worried I was alone in feeling it. I missed having my baby safely in my belly. The outside world suddenly felt so big, and she was so small. The human realm felt a bit unsafe, like it could blink her 7 lb 6 oz frame out of existence in an unaware twitch of its monstrous eye.
While I loved the feeling of being pregnant, by the 9th month my body was, of course, relieved not to be lugging another human around in my abdomen, but my mind and heart had some catching up to do.
As a writer, I liken it to the process of a tiny seed of an idea transitioning into a published piece. What was once part of your inner world is out there, open for the world to read and enjoy but also to critique.
Author Elizabeth Stone put it well when she wrote, “Making the decision to have a child — it is momentous. It is to decide forever to have your heart go walking around outside your body.”
Both conventional wisdom and science support the idea that changing hormones are a major contributor to the “baby blues” and postpartum depression, but upon reflection, I wonder if the grief of such a major change, despite being a joyous change, is a larger factor than we often acknowledge.
As I move through another major change, sending Lucy off to college, familiar feelings from 18 years ago resurface. My little seed of an idea has sprouted from a small published piece into a fully developed novel and is now being adapted into a screenplay.
It’s a writer’s wildest dream, and yet many people forget how screenplays are typically written by a different writer. It’s still your story, and yet it’s not your story.
As an artist, at some level, you realize it was never really “yours.” Your muse always intended for you to share it. As a parent, it’s precisely the vulnerability of sharing your child with the world that leaves you wondering whether your child is prepared to transition into adult life. If you’re lucky, you catch glimpses of readiness as their departure from home draws nearer. I caught one of those glimpses on a hard day recently.
I was home alone following a vision-related incident that left me in a moment of incredible grief and shame. It had been quite a long time since I’d felt any intense emotion related to my vision loss, and it was as if several years of pent-up sadness came pouring out. I found myself sobbing on my bedroom floor in what I thought was an empty house. Lucy, who had gotten home early from work, heard me and rushed into my room, probably worrying someone had died with how hard I was crying.
I don’t think I ever intended to hide my emotions from my kids, but in retrospect, I mostly kept my feelings private for fear of burdening them or passing down pitying narratives about blindness. But in this raw, untamed moment of grief, there was little space for philosophy or pride.
Between sobs, I recounted the grief-inducing incident and a litany of fears about the future. I felt small, unedited, and a bit afraid of her response. After all, I’m the parent. Shouldn’t I be the one with the answers, comforting her?
To my relief, Lucy knelt down on the floor with me, wrapped her arms around me, and cried with me. She spoke words of empathy and love, and soon our tears turned to laughter, and we sat on my floor and talked for several hours. It was there that I glimpsed signs of readiness for the world that reassured me as a parent. Yes, university, future mentors, and travel will support maturity and growth. But as both an artist and a mom, I’m proud to have a small part in shaping a character with heart—one who can sit and be present in a wild moment of grief with another human being.
There will be viewers who will never know the characters in your book the way you do. They will never reach for the 1-year-old the way you did when she gleefully chased a flock of geese at the park, trying to pet them, unaware they were hissing, ready to nip her tiny fingers. They will never know the barefoot 2-year-old who chased the ice cream truck at Olympic speed or the 3-year-old who announced there is no such thing as bad people. They will never lay eyes on the 4-year-old dog whisperer in pigtails, or the 8-year-old doting on her little sis. They will never hear the 10-year-old’s sweet songs her teenage self will label “cringy.” And they will absolutely never know the bond between a 14-year-old puppy raiser and a yellow lab named Moon.
Your precious protagonist is walking off the page and onto the big screen, and you absolutely know there are viewers out there who will never read the book. Only you and your readers— the childhood friends, the family, the neighbors— know the original, unabridged version. You anticipate the magic of seeing her come to life on the screen, and yet as a reader and a writer, you know the book is better.
To all parents and young adults making their way into the world, I dedicate the following poem by Mary Oliver. Her words capture the wildness of emotion and the sense of finding one’s place amid the chaos of life:
“Wild Geese” – Mary Oliver
You do not have to be good. You do not have to walk on your knees for a hundred miles through the desert, repenting. You only have to let the soft animal of your body love what it loves. Tell me about despair, yours, and I will tell you mine. Meanwhile, the world goes on. Meanwhile, the sun and the clear pebbles of the rain are moving across the landscapes, over the prairies and the deep trees, the mountains and the rivers. Meanwhile, the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting— over and over announcing your place in the family of things.
May we all find our place in the family of things, embracing the wildness of both grief and joy.
A black and white image of glasses sitting on a table
Grief sometimes feels like a taboo subject, especially in blindness circles. There is a valid concern that expressing grief about vision loss might further perpetuate the myth that being blind is sad or pitiful. I believe it’s important not to feed into this false narrative, and at the same time I cannot deny that grief is part of my story.
When you live with progressive vision loss, you learn a lot about loss and grief. When you’re also a clinical psychotherapist, you bring multiple lenses to this grief experience.
There’s my clinical lens, that knows the different frameworks and stages for understanding grief. This part of me holds multiple certifications in grief therapy and can assess how grief may be impacting a person’s functioning.
There’s the empathetic lens, that feels the deep heartache and offers compassion while I sit with people as they grieve the loss of a parent, a child, a close friend, an aspect of their life related to disability or illness, a beloved pet or an end to a relationship.
And then there’s the human being with lived experience of loss that cannot avoid the wide range of emotions that accompany loss. There’s nothing I can read in a book or learn in a training course that removes the reality of loss in my life. Yet there are ways I am learning to be present with my grief that support me in moving with and through the pain rather than avoiding or feeling stuck.
For me, this means being present with each new phase of loss, not dismissing or minimizing the impact of these changes in my life and finding trusted loved ones to walk this path with me. I find myself drawn to people who don’t try to fix or fade my pain, but rather join me in all the feels. I can sense pity, the near enemy of compassion, from miles away. So, I surround myself with those who meet me with connection, laughing with me when lightness is available and sharing in my tears when I need to release the pain of multiple layers of loss.
I have noticed a significant change in my vision over the last year. The once crisp central vision appears to have a cloudy tint and natural light, which was once my best friend, now adds a blinding effect. My annual visit with my retina specialist last month confirmed what I already knew to be true – my vision is declining at a more rapid rate than in previous years.
I’m grieving the primary loss of the vision, and then all the dominoes affects, which is aptly termed “secondary losses” in the grief therapy world. There’s a grief tool called “Inventory of Losses” that I’ve chosen to use to acknowledge all of these secondary losses. My list includes really simple things like no longer being able to hand write cards to loved ones – something I truly enjoyed. While the memories of favorite artwork and treasured photos are etched in my mind, I miss the vibrant colors and the level of visual detail that instantly brought me back in time. Of course I am fully aware that there are many tactile ways to appreciate art and meaningful non-visual ways to honor memories. I am grateful and curious about varied sensory experiences, AND I am sad that the visual way of connecting with the world around me is fading. Both are true at the same time.
Learning new ways of accessing the world requires time and effort to learn new tools. While there’s parts of learning these new skills that feel empowering and hopeful, adaptations do not simply erase the emotional pain. I am learning to make room for both the hope and the pain, not allowing one to overshadow the other. What does this look like in real life, you may wonder.
It depends on the day. It may look like allowing myself to feel the anger and despair on a Tuesday, but still showing up for Screen Reader training on a Wednesday. It may look like giving myself the grace and room to show up or skip a social gathering depending on my energy level, while being careful not to allow myself to fall into rigid patterns of forcing or avoiding being social.
It often feels messy and unpredictable to move through these decisions and emotions, and that’s how I know I am on a grief journey.
Grief is not a problem to be solved. It’s a normal part of the human experience that needs to be witnessed with empathy and compassion. This month, Doublevisionblog is creating space to honor the role grief plays in our stories. We welcome readers to find new ways of honoring losses, big and small, primary and secondary.
At the end of each blog post, we’re sharing excerpts and poetry from some of our favorite writings on grief.
“Imagine the feeling of relief that would flood our whole being if we knew that when we were in the grip of sorrow or illness, our village would respond to our need. This would not be out of pity, but out of a realization that every one of us will take our turn at being ill, and we will need one another. The indigenous thought is when one of us is ill, all of us are ill. Taking this thought a little further, we see that healing is a matter, in great part, of having our, connections to the community and the cosmos restored. This truth has been acknowledged in many studies. Our immune response is strengthened when we feel our connection with community. By regularly renewing the bonds of belonging, we support our ability to remain healthy and whole.”
― Francis Weller, The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief
In a culture highly attuned to sniffing out toxic positivity and cringy Mr. Magoo-esque humor, it’s sometimes challenging to find appropriate spaces for light-hearted and humorous stories related to blindness. We share them from time to time but definitely with more caution than when we first began this blog, as we are more aware of how certain stories may be perceived. Perception, however, is exactly why I’m sharing a vision-related misperception that recently made me laugh.
A group of people in a circle singing together at a river beach
I was sitting in a circle singing with a group of friends and family at a nearby beach, and all of a sudden I heard some unfamiliar male voices joining in. Based on the cadence of their voices and the goofy lyrics they were making up as they sang, I guessed they were from a nearby home for young adults with developmental disabilities. I guessed that the older, female voice I heard whispering occasional redirections to them was either their mom or the group home caregiver. After several songs, I heard another girl from the group home come to the boys and tell them it was time to leave.
When the two young men ignored the girl and kept singing, I heard my mom step in and ask one of our friends to escort them up to the parking lot.
As we were packing up our beach blanket, I asked my mom why the woman who was with the teenagers didn’t step in to help.
“What woman?” My mom asked.
“The one who kept whispering redirections and encouragement while we sang.”
“That was me!” My mom said, to which we both laughed.
Later that evening I remarked to my husband how glad I was that our group of singers was so welcoming to the teenagers with disabilities.
“You mean those kids who were high?” Ben asked.
“No,” I insisted. “They were kids with disabilities. That’s why my mom was helping them, and then that other girl from the home came to tell them it was time to leave.”
Ben told me he was pretty sure that was just their friend and that they were just teenagers who had smoked a lot of weed. Unconvinced, I asked several friends who were there, and they not only agreed with Ben that the kids were high but also added that the two guys who sang with us were singing in an exaggerated way to be funny, but also pointed out that they still must have been enjoying singing or they wouldn’t have stayed for so many songs.
So basically the two guys with disabilities and their caretaker were really two kids on drugs being told to settle down by my mom.
The sheer humor of this misconception not only made me laugh, but also made me glad that I don’t have friends and family who are constantly narrating everything that’s going on. I enjoy being allowed to construct my own version of what’s occurring at any given moment, even when it’s hilariously wrong.
When I really think about it, would my awareness of the quote-unquote right visual details of that story really change anything? When it really comes down to the marrow of that scenario, doesn’t the following statement apply to both perceptions? Two teenage boys experiencing a slightly altered reality were welcomed in by a group of singers on a beach, and a motherly figure accommodated their participation throughout whispered encouragement.
As I process this story further, I am left wondering whether I could reverse engineer perceptions of other stories in my life. Since our realities are really based on our own perceptions, are there scenarios I could choose to perceive differently in order to bring in a lighter perspective? Could I allow myself to laugh and have fun re-framing new and old stories alike?
This week I plan to allow my curiosity to frolic and play a bit, and I invite you, curious DoubleVision reader, to join me in a little misperception magic.
The last few weeks were filled with mixed emotions as I attended the funeral of my beloved father-in-law on June 21st, and the wedding of my dearest friend the following Saturday. At both events, I felt the warmth of connecting with my community of family and friends. And at both events I noticed how my blindness impacts my sense of belonging in these community gatherings.
I was delighted to reconnect with loved ones, some I had not seen in person in many years. However, the cloudiness that has slowly settled over my central vision in recent years made it difficult for me to recognize faces as I once could. While I still had the strong desire to run up and embrace people, I found myself waiting for them to approach me. This was frustrating because it didn’t feel in alignment with my personality or sense of self.
I also felt acutely aware of what others may be thinking/saying about me as I did my best to navigate each new environment. I longed to move with ease and fluidity as the sighted people around me seemed to mingle effortlessly. There were many times when I wanted to be able to help my grieving loved ones or my celebrating friends with all the details that go into hosting a major event. Yet, once again, my outward appearance seemed misaligned with the intentions of my inner self-
I found myself returning to an old story that goes something like this, “I don’t belong in these spaces. My blindness makes other people uncomfortable. They want me to be different and to show up more like they do”.
I have no way of proving if this old story is false or true. And it’s hardly that simple. This old story is rooted in stories that I have lived from a young age – times and places in which I felt wrong for showing up as I am. Experiences that taught me that the way I am is awkward, perhaps humorous, and doesn’t belong.
I used to internalize these experiences – assuming there was something wrong with me, that perhaps I was being too sensitive or imagining the awkward encounters. But then I started connecting with other people with lived experiences of disability and found so much overlap in our experiences that I could no longer categorize them as a “me thing”.
I was reminded of how much of my stories mirror those of my disabled peers on the Tuesday between the funeral and the wedding. Joy and I co-facilitated a day-long staff training for the Department of Services for the Blind summer YES2 program that included a section on exploring lived experiences of disability. Joy and I listened as staff members shared story after story of situations in which they were stigmatized, excluded, and discriminated against in both overt and covert ways. I was reminded of the complexities that accompany moving through the world in a body that is different from the majority. So many complexities that cannot be pulled apart in a single blog post.
What I will focus on is validating that past and present stigma about blindness is real. It’s not something that myself or my peers with vision loss are creating or imagining. It happens in the workplace, in public settings such as the grocery store, and in community gatherings. And when left unprocessed, it compiles over time, like an overflowing trash bin left unemptied.
While I am a proponent of positive reframes, I want to make sure I’m leaving room for the messiness that living outside the “norm” may look like. This means leaving room for all the emotions and grief that may accompany being in spaces that are designed for and by able-bodied people. As I reflect on the ways I’ve witnessed, experienced, and participated in othering, I am certain that this is not easy work
So today, my reframe is this: The work of processing these stories is not mine to do alone. This work belongs to all of us because we all belong to a society that stigmatizes what is different or unknown.
I don’t pretend to have a recipe for this work. I view this process as more of an art, requiring us to peer outside our own lived experiences to connect with what other humans may be feeling or needing. It’s the art of noticing our own limiting beliefs about others and challenging what we think we know. It’s less about putting ourselves in someone else’s shoes, and more about connecting with who is in front of us with openness. It’s my hope that engaging in this process will shift old stories for all of us.
[Image description: abstract image of a hand gently touching a shoulder with light pouring in from up ahead]
At the beginning of January I flew with my husband, Ben and the girls to meet our extended family in Cancun. I’m a nervous flyer. So when turbulence arose on our 7-hour flight , I quickly flipped through Audible for a calming book. I landed on “Meditations for Breaking the Habit of Being Yourself” by Dr. Joe Dispenza. In my very anxious state, I started working on moving into a more relaxed one. The end of the meditation had listeners ask for some kind of sign to show up that would reinforce the state you want to live into. Without thinking much about it, I asked that I’d meet someone in Mexico who would remind me to relax and have fun. Then we landed in Cancun and I promptly forgot about the plane ride meditation.
Fast forward to day three of our trip. It was fairly easy to relax in an all-inclusive resort, though on this particular afternoon I found myself a bit anxious. Ben and a few others were headed out on a bike ride, and since there were no tandem bicycles, Ben was helping me find a place to hang out by the pool. I was trying to orient myself to the space, locate the nearest restroom, etc to ease my anxiety. Just in case I couldn’t find it, I decided to make a pit stop before lounging by the pool. Ben was about to meet up with others at the bike rentals but waited outside the restroom in order to help me find a good spot to lounge while they biked.
I didn’t want to delay the biking group, so I quickly used the bathroom and was washing my hands when I felt my right ear clog up very suddenly. My body tensed as my brain computed that this is always the first sign of my vertigo attacks, something I’ve dealt with over the past 8 years. I knew that I had only seconds before the spinning would begin, and I didn’t want to be stuck int the bathroom without any way to tell Ben what was happening.
Without stopping to dry my hands, I bolted for the exit, knowing that if I could just make it outside, Ben would at lease be there to sit with me during the spinning in case I fell. I was about 4 steps from the door handle when the spinning hit me, however, so all I could do was turn and lean against the bathroom wall, gripping the flat surface as if handles might magically appear to grasp..
Just then the door opened, and I heard the voice of someone who sounded like a resort employee rushing toward me and grabbing my left hand. “Señora, you okay? You need medico?”
“No,” I managed. “Mi Esposo outside. It’s just vertigo.”
Suddenly I felt someone grasp my right hand and place her hand at the base of my skull.
“I know this is so scary. Vertigo is seriously the worst,” she began, pressing two of her fingers firmly into two points where my neck and skull converge. “But it’s just your eustachian tube filling up. If you press your head into my fingers as hard as you can, I promise you it will drain.” I did as the stranger instructed, suddenly feeling hyper-focused on my one task. Sure enough, my ear became unclogged and the spinning subsided.
“You medico?” The woman holding my left hand asked the woman holding my right.
“No,” she said and continued saying reassuring words to me that I cannot recall.
Once my adrenaline subsided, I thanked the woman on my right, who said her name was Julie. She offered to walk me outside and show my husband the pressure points she had used. I exited the bathroom sheepishly, introducing Ben to my new friend Julie, who quickly showed him the pressure points she had pressed, along with a couple others on my hand that could also help.
“How do you know all this?” I asked. “Are you in the medical field?”
“I’m an energy healer,” she said.
“Interesting,” I paused for a moment, wondering if she would explain further, before continuing. “I’m not sure what triggered this. Doctors have called it migrainous vertigo and gave me a list of foods to avoid. I don’t think I’ve had any chocolate or caffeine, so maybe it’s the extra sugar I’ve been eating.”
When Julie spoke next, her words almost made me fall over. “Well, it mostly comes from taking yourself and life too seriously. You need to relax and laugh more.”
“Well, I guess I was a bit anxious since my husband was leaving on a bike ride, knowing I’d be alone here at the pool. I have a visual impairment, so I get a little nervous in new, unfamiliar places when I’m by myself.” I explained.
“First, I want you to know that you’re never alone,” she said making a wide circular motion with her hands, “You are being watched over constantly.”
I nodded my head vaguely.
“I can tell you don’t fully believe me,” Julie went on. “Know that you don’t have to control life. God is in control. Vertigo episodes will happen maybe a few more times in your life, but once you find your life purpose, it won’t happen anymore.”
I nodded as I took in her words, biting my lip and wrinkling my brow as I tried to process what she was saying.
“And remember. You see a lot, maybe not with your eyes, but you see from here and here,” she motioned to her chest and stomach.
It’s hard to put an experience like this into words because it all comes out a bit flatter than it actually felt. I found myself hugging this stranger, crying and sharing the type of moment typically reserved for close loved ones.
It was only later, once Ben and his brother had left for the bike ride, that I began to really process the experience. As I floated serenely in the pool, the request I had made on the plane ride came back to me. I thought about how serendipitous events like these seemed to occur more when I was younger. I thought about why that might be but then just allowed myself to relax and not overthink it as I floated around the pool.
As I reflect on this now, a month later, I can’t help but wonder if at some point I began to expect less daily miracles. I often ask for the big ones— a relationship to heal or someone to be cured from cancer. But I forget to ask for the small chance encounters, those luminous nudges that remind us we’re all on this uniquely human journey together.
As Jenelle and I head out tonight on a train ride to meet up with our younger sister in Montana over mid-winter break, I plan to expect more small miracles along the way.
Please join me in anticipating luminous nudges in all of our lives.
As we become awake to these small miracles all around us, may we become more aware of their enormity.
Photo description: woman's hands chopping an onion
As we approach the holidays, it’s helpful to revisit the feelings that sometimes come up for people with vision loss during large gatherings involving cooking and food.
I brought this up in a previous post, “Just Keep Tossing the Salad,” to which my husband recently informed this naive, Midwest-raised girl on the innuendo of this phrase, much to my horror. All meanings and laughter aside, helping out in the kitchen when you’re not hosting can be a very vulnerable experience for those of us with vision loss.
While I often learn what doesn’t work from upsetting situations, I also learn what does work from positive experiences. My friend and neighbor, Gabe recently hosted a soup night for our book club, and I was struck by how included I felt in her kitchen compared with previous experiences.
When I first entered her home, I was greeted by the sounds of chopping, stirring and light chatter. I sat on a stool, nervous that I’d be told to just relax or motioned to stay out of the way, as I have been directed in many kitchens. To my delight, Gabe rattled off a few task options she still needed help with, and one included chopping tomatoes. I chose that one.
Gabe placed a cutting board on the counter in front of me and handed me a knife. Besides when I’m at either my parents or Jenelle’s house, no one ever thinks to hand me a knife, and so I took it with a little soar of the heart. I know this may sound silly to many people, but feeling trusted with sharp objects feels like receiving a little nod of “you’re capable”, “you’re one of us”, and even “you belong here”.
This isn’t to say that those who are unable to use knives are incapable or don’t have a place at the table, so to speak,. It’s more about the assumptions that are made about people with vision loss. While there are nifty little utensils like food choppers to help people who aren’t skilled with knives, there are also techniques that people with vision loss can use when chopping with traditional knives. There are blind chefs like one of our fellow Daring Sisters, Regina Mitchell, who teaches non-visual techniques in the kitchen. And many may remember Master Chef Christine Ha, who is blind and won the 3rd season of Master Chef.
“I feel my way through the kitchen,” Christine says in one of her videos, which is unfathomable to some people living in a culture that places sight over every other sense.
I remember once cooking a holiday meal and a family member saying “You’re amazing cooking like this. I mean, you scare the shit out of me, but you’re amazing.” I remember the heat of shame rising up from somewhere deep, as I managed a half smile and a “Um, thanks.” To be seen as capable, as useful, as well, just ordinary, is something I think most humans crave, though there is a certain voracity with which I crave it. I’ve dug into my emotions on this one, and I don’t feel it comes from a place of pride or stubbornness. I believe it falls within the realm of dignity. It’s the same reason that an aging friend who is not as nimble on her feet these days recently told me she’d rather be allowed to fall once in awhile then have her adult children constantly hovering over her when she walks.
Again, this isn’t to say that depending on others equates to loss of dignity. On the contrary, there is often beauty and connection in dependence on one another. It’s when reliance is assumed or asserted as a necessity instead of asking or trusting that it becomes dicey.
So, if you give a twin a knife, she will not take over the kitchen or chop off her fingers. She will use the tactile techniques she has learned over the years. The tomatoes may not be perfectly symmetrical or be chopped at chef speed, but they will be added to the pot, and they’ll simmer just the same
I recently wrote a letter to some dear friends prior to a group vacation. I felt so encouraged by their responses that I am choosing to share it with Doublevisionblog readers in hopes that it may feel supportive to anyone who may be on the verge of communicating their own vulnerable truth.
Writing this letter is a vulnerable experience for me. I am tempted to have ChatGPT write it for me, and yet the actual process of writing this letter feels just as important as the final draft.
As I lose more vision, I’m continuing to adapt to the physical world around me by using a white cane, learning new assistive technology techniques, and asking for help when needed. What I can see from day to day is often unpredictable and depends on variable factors such as lighting and my physical well-being (how much sleep I’ve had, etc). I’m often not sure what I need and find it helpful to take it day by day.
I’m reaching out before our time together b/c I imagine it might be confusing, perhaps even frustrating at time, to know how/if/when to offer me assistance. I often don’t know these answers until I’m in the midst of a new environment and sometimes find myself freezing b/c asking and receiving help isn’t easy. It can be a painful reminder that my body does not work like those of most of my peers. I often feel small and objectified in these situations. At times I feel tempted to hide away and no longer fully engage in social activities. But I also know that would not serve my well-being or yours. The relationships we’ve formed over many years are mutually supportive, and I don’t want to let fear or shame diminish these vital connections.
So writing this letter is part of my healing journey. It’s a way for me to offer some guidance around helping me in ways that ideally allow all of us to feel confident and empowered. Some of the fears that come up for me while making these requests are that I’m being “extra” – too self-centered and may be perceived as demanding, that being my friend will feel like a chore or a burden rather than a joy. It’s painful to name these fears and brings up a lot of emotions. As painful as it may be, I am ready to let go of any relationships in which that is the perception. I know that I have value beyond my physical abilities. I also know being in my life may require resources such as time, patience, and creativity. My expectation is not perfection from myself or anyone else. The guidelines I’m listing below are merely that – a basic guide to what feels supportive and what does not.
There’s no need to walk on eggshells or get awkward. Rather, I invite you to join me in the messiness of adjusting to life circumstances I did not choose, but that I am choosing to embrace. And to laugh WITH me about how corny that may sound.
Supportive Vibes
Allowing me to navigate with my mobility device – that is literally its job, to provide me with tactile information about my surroundings.
Offering an arm in situations where navigating with the cane may be more challenging, such as a small crowded restaurant.
Educating yourself and others about the experiences of living in a disabled body. Two of my favorite books on the subject include “Sitting Pretty” by Rebecka Tausig and “The Country of the Blind” by Andrew Leland
Including me in the present moment by providing audio descriptions of surroundings. Ex: “There is a lady wearing glittery fairy wings off to our right”, or “There’s a dude on the corner holding a sign that says the world will be taken over by aliens in 3 days”.
Giving visual descriptions of photos and follow-up details when saying things like “Look at that!” or “It’s over there”. Ex: Adding details using a clock, such as “Your fork is at 3 o’clock” or “Your shoes are two feet to the left of you”.
Avoiding any grabbing, pushing, pulling or taking control of any part of my body. Instead, invite ME to hold YOUR elbow to provide sighted guide.
Noticing and avoiding any temptation to treat me like I’m a child you need to steer or keep track of. I’m an adult who may get lost at times and that’s okay.
Including me in activities you’re not sure if I can do in the same way as you. This allows ME to choose if a certain activity feels too risky or challenging. Ex: “This is going to be a steep hike with lots of rocks. How are you feeling about that?”
Set boundaries that work for YOU. Ex: “I am going for a run and want to run at a fast pace. I won’t be able to provide any sighted guide for this activity.”
Be creative WITH me. Ex: “I was hoping we could rent bikes on this trip, perhaps there’s a tandem bike option we can check out together”.
Thank you for taking the time to listen to me and gain a better sense of what this experience of slowly going blind is like for me. Please ask me any follow-up questions you may have.
In honor of World Mental Health Day earlier this week, we’d like to highlight the intersection of mental health and vision loss, we are sharing parts of our recent presentation at the 2023 Olympia Vision Fair. We titled it “Seeing the Unseen: A Discussion on Mental Health & Vision Loss”. The goal of the presentation is to address the psychological impact of losing sight in an ableist society.
We’re inviting the Doublevisionblog community to participate in similar ways as our Olympia audience. We’ve listed 10 limiting beliefs below. As you read the below statements, tally how many of these hidden limiting beliefs you’ve thought or expressed about yourself or someone else with a disability.
I’m a burden.
I don’t have value.
I’m not enough.
I don’t belong.
I’m less than.
I’m stupid / not smart.
I need to blend in.
I’m powerless.
I’m not capable.
I’m helpless.
It’s important to recognize that having these thoughts about self or others does not make them true. Identifying and naming limiting beliefs is a primary step towards unpacking them in a meaningful way. While these limiting beliefs may be painful to explore, having these thoughts doesn’t make you or anyone else a bad person.
Recognizing where these beliefs stem from is an essential part of understanding how these beliefs crept into our internal experience. Learning the history of disability sheds light on how these limiting beliefs formed. For example, did you know that from 1867 to 1974, it was illegal to be disabled in public in various cities across the U.S? Google “the ugly laws” to learn the ugly history of how disabled people have been treated. We know that the changing of laws does not erase the stigmatization. The ugliness lives on in the limiting ways we perceive and treat people who don’t fit the standards of “normal”.
Offering ourselves and others compassion in the midst of these harmful beliefs can be empowering. The research that supports this claim is strong and we have experienced the power of self-compassion practices in our own lives. Here’s a link to some of our favorite guided self-compassion exercises.
Finally, seeking connection with others who share lived experiences often leads to a stronger support system resulting in better mental health outcomes. None of this is new to our Doublevisionblog readers – we have highlighted the benefits of communities such as Daring Sisters retreats for blind women (and now men, too!) for many years.
Our intention in sharing our own lived experiences including struggles with limiting beliefs, is to normalize and validate the lived experiences of our readers. In doing this, it is our hope that you will feel empowered to continue moving through your own personal journey with curiosity and compassion.
Join us in a conversation on creativity, grief and shame as we sit down with Scott Hodge and Anna Hammond for an interview on The Orchard’s podcast. As always, we’d love to hear from you, so feel free to comment or reach out via email at mail@doublevisionblog.com
