Author: Jenelle

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. 

Joy and I recently traveled to WA’s state capitol to speak at the Olympia Vision Fair, hosted by the Hope Vision Foundation. Highlights from this trip included eating a chicken pot pie the size of my head (more please!) and meeting the founder of Hope Vision Foundation, Dr. Erin Seefeldt. 

Ophthalmologists often play a memorable role in our experiences of vision loss. Yet mystery seems to surround the world of ophthalmology, from the strange spelling that requires spell check EVERY time to the often silent figure behind the clunky eye testing apparatus. Meeting such a warm, personable ophthalmologist (thanks again spell check), prompted me to create a quick “Ophthalmologist Q&A with Dr. Erin Seefeldt”. 

Q: What inspired you to create the Hope Vision Foundation?
A: As an ophthalmologist I see many patients with conditions causing vision loss. From my training, I knew that vision rehabilitation existed and had trained at the American Lake Blind Rehabilitation center. The resources and professionals there are amazing. Then I realized that for non-veterans the options were not as robust and there were barriers to getting rehabilitation. These were personal and system issues. It is not easy to refer patients or learn about the services in each area. We also don’t have the time built into our schedule to really talk and listen to patients about how they are adapting to vision loss.  I founded hope vision foundation to create a resource for our community that allows all patients with vision loss to connect to resources. 

Q: When you were in medical school, what type of training did students receive on how to communicate with patients about a diagnosis of vision loss?
A: In medical school and internship we receive training on ‘breaking bad news’ but no disease specific training. We were given techniques to use and practiced with simulated patients (actors). This was fairly new when I trained and in practice every patient is different. The better you know your patient the better you can communicate a difficult diagnosis with empathy. 

Q: What do you wish more eye doctors / eye care specialists could learn about working with patients who are experiencing vision loss?  
A: I wish more eye doctors could learn from patient’s with vision loss how it impacts a patient’s activities and relationships. I also think it would be helpful to train doctors about low vision devices (high and low tech) and techniques. All doctors should be given basic training on interacting with people with hearing and vision disabilities. 

Q: What is one critical piece of advice you’d like to share with people who are currently adjusting to vision loss?
A: Understand your reason for vision loss and what to expect over time.  Knowledge is power and often not knowing can lead to worrying more and imagining the worst. 

Readers: What other questions do you have for Dr. Seefeldt? We can include your questions in a future Ophthalmologist Q&A

 

Picture this: identical 7-year-old twin sisters racing into their playroom after swim lessons, brown curly hair still dripping wet from the Centennial beach. Damp beach towels sprawl carelessly across the floor (sorry dad), as mirror images thoughtfully arrange dolls and stuffed animals into “swim lesson groups” in order to “teach” their “students” how to swim. This was our daily summer routine, and we REALLY got into it, demonstrating the back stroke for bugs bunny (Bugsy) and ensuring Raggedy Ann and Andy kept their WHOLE faces in the water while floating. Teaching what we had just learned delighted us  

Teaching may just be in our blood, as both our parents and many aunts/uncles/cousins were teachers at various points in their careers. Or perhaps we were vaguely aware that showing our cabbage patch kids how to do frog leg kicks actually strengthened our own swimming abilities.  

Here we are, several decades later, teaching in different capacities the skills we ourselves are still learning. This summer, I contracted with WA State Department of Services for the Blind (DSB) Youth Services to provide weekly mental health workshops to teens. It was fun designing the curriculum with many of the Social Emotional Learning strategies I learned in my Breathe for Change certification program, along with mental health skills from my work as a clinical social worker. Once again, I found myself learning as I was teaching because the students were engaging and intuitive about their mental health.  

While I gravitated towards evidenced-based approaches to improving mental health, my students offered me fresh perspectives merely by being themselves. Here are 3 Lessons I learned this summer that I will add to my personal mental health toolkit.  

1.   Laughter is Key: I spent the first few weeks with the students focusing on distress tolerance skills such as breathing techniques and mindful movement exercises. I asked students to practice these skills between weekly workshops and invited them to share what they learned with the group. At the final workshop, one student shared that breathing techniques sometimes helped relieve anxiety, but that she noticed the biggest shift when another student told her a funny story in the midst of a rough day. Even as she shared this, she began to giggle, which felt contagious in the best way. Laugh more, feel better. It’s simple and I need more of that in my daily life. 

2.   Sometimes It’s not WHAT you say, but HOW you say it: One of my favorite moments from the summer workshops was when we were working on creating mantras. A mantra is a word or short phrase that can be used to motivate, grow self-awareness, and encourage perseverance. Neuroscience teaches us that the more we repeat and practice the exact same phrase, the more likely it is to become an automatic thought and belief. I gave students examples of mantras such as “Just keep breathing” or “This moment will pass, and I am strong”. One student asked if he could say his mantra with an Italian accent. I have been teaching the art of mantra-making for quite some time, and NO ONE had ever asked me this. I enthusiastically encouraged him to share his mantra with his Italian accent. Now I wish this was a Vlog instead of a Blog so you could hear him saying “I am doing the best I can!” with the BEST Italian accent I have heard since my trip to Italy in 2009. I have adopted this student’s mantra, Italian-accent and all into my toolkit and use it whenever I am struggling.  

3.   It’s Okay to “Pass”: Maintaining a “trauma-informed” approach is critical to working with human beings and was a primary focus of my education at University of Washington. One key factor to trauma-informed approaches is offering choice. While my goal is to engage all students and encourage participation, I also offer students the choice to “pass” during sharing time and activities. I observed myself feeling slightly irritated when the same few students were choosing “pass” week after week. “How are they supposed to learn anything if they don’t participate?!” I thought to myself a few times during week 3 and 4. I allowed myself to get curious about my feelings of frustration and with this curiosity came a deeper knowing – these students are learning something very critical: They have agency. Perhaps they have rarely experienced the empowerment that stems from choice. I reflected on all the areas of my life where I have the choice to say “pass” and perhaps out of obligation/guilt/pressure, I don’t choose this enough. And just this week, I was asked to volunteer for yet another committee that I really don’t have the bandwidth for. Without hesitation, I replied “Pass” and instead of a wave of guilt sweeping over me, I felt a wave of relief and empowerment.

When we take time to reflect on what the students in our lives are teaching us, the lessons tend to sink in more deeply. Who are the students in your life? What are they teaching you?  

April is often an unpredictable month with budding tulips followed by a fresh blanket of snow. I notice my moods seem to mirror the twists and turns of these weather patterns as I grieve the recent loss of my beloved furry family member, Wrigley.

While the grief of Wrigley’s death is new, the unpredictable nature of grief feels familiar. The ongoing adjustment to slowly losing vision has shown me that no one feeling is final. Grief becomes both an expected and unexpected experience.

In many ways, April feels like a metaphor for life, reminding us that change is always in the air. With change comes loss, with loss comes grief. We long for what has been lost. This is indeed the human condition.

In my work as a grief counselor, I know that grief comes in waves. In my experience as a grieving human, I have felt the push and pull of these waves. Although grief is part of the human condition, the way we each grieve differs. There is no “right way” to experience grief.

As April comes to a close, I am grateful for what this season teaches us about change. I find myself simply sitting with what arises, moving with and through each emotion. These feelings can be uncomfortable, so it is tempting to resist them, but as Sadhguru says, “if we resist change, we resist life.”

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 “You Are the Light” →

It’s been quite awhile since we’ve added a new blog post. It’s definitely been on our minds as the days pass quickly with family, work, school, and travel. We remain passionate about sharing our journeys, and providing education, advocacy, and stories about blindness to our readers.

As many readers may know, I am in the midst of a Master of Social Work program at the University of Washington in Seattle. I recently completed the research portion of this program, and would like to share the narrative Joy and I created to illustrate the research findings.

I designed this research study using Brené Brown’s.research on shame resilience, and collected data from 5 women who have attended an Oasis Center for Hope retreat. Disclaimer: This is Masters level educational research and not intended for publication or peer review. It is my hope that future research projects with larger and diverse sampling can be pursued using similar research design and methodology.  Continue reading “Jenelle’s Research Findings on Shame, Blindness, & Connection” →

The white cane continues to be a sign of independence for the blind community. White canes also continue to baffle the public. That’s why October 15th, White Cane Awareness Day, is an important day to dispel myths and provide information on what the white cane is all about.

White Cane FAQs

Q: If someone has a white cane, does it mean they need help?

A: People with vision loss use white canes to navigate independently. A person using a white cane is less likely to need assistance because the white cane is used to locate and avoid obstacles. It is best not to assume that someone needs help, but rather offer assistance if you feel inclined and be respectful if they do not want assistance.

Q: That person is using a white cane, and now they are reading a book. Does this mean they are pretending to be blind?

A: Vision loss comes in many different forms, requiring different adaptations. Some people who use white canes have peripheral vision loss which makes navigating safely without a white cane challenging, but maintain central vision which allows them to see print and recognize faces and objects using their central vision.

Q: Why are the white canes so long?

A: The length of the cane is important because it signals to the user what is happening several steps ahead of them. If the cane is too short, the user will not have enough warning that a curb or staircase is ahead.

Please let us know if you have more questions or comments about white canes!

Photo Description: Picture shows a person’s legs walking with a white cane navigating ahead.