CVI Mascot - VIC

Blogs & News

Dragonfly’s Blog 3 Independence from Fear

  • As a child, I recall being incredibly anxious and overwhelmed with changes in my environment such as visiting new places.
Dragonfly is an adult who has had CVI since birth, which was only diagnosed in 2018.
Dragonfly is an adult who has had CVI since birth, which was only diagnosed in 2018.
Dragonfly’s Fridge Door
Dragonfly’s Fridge Door

My fridge serves as a canvas filled with encouraging quips and souvenir magnets brought home from my many adventures and travels. This cluttered space is contradictory to the tidy visual environment advised by CVI experts. The shapes, textures, and scraps usually are visually lost to me because of my dorsal stream issues; BUT my mind’s eye and memory knows exactly what is on every inch of that fridge’s exterior.

The clutter and various quotes remind me to take things “one-step-at-a- time” while staying strategic and oriented. That approach pivots my perspective, keeping me balanced so my CVI fears do not limit or control me.

Previously, I’ve posted blogs here about managing what I call my CVI dragons, viewing them instead as dragonflies. My fridge helps me manage my thought process, especially when I feel overwhelmed by change, or too many things going on at a time.

A few of my favorites:

Change has a considerable psychological impact on the human mind.
To the fearful it is threatening because it means that things may get worse
To the hopeful it is encouraging because things may get better
To the confident it is inspiring because the challenge exists to make things better

  • King Whitney Jr.

The paramount obligation…is to develop… the ability to think clearly and independently, and the ability to live confidently, courageously, and hopefully.

  • Ellen Browning Scripps

Then, I’ll remember “EGBOK” (Everything is Going to Be OK, a quip coined by Ken and Bob, two Los Angeles radio hosts who helped the city cope with the tumultuous 1970s, the period that I grew up in).

When I feel overwhelmed and need inspiration, I’ll stand in front of my fridge and use my memory as I scan around, synching what I see with what I recall is on it. Keeping that view reminds me that the anxious dragons can be tamped down while I use the approaches taught to me as a child. The panic subsides, and soon I know that indeed, Everything is Going to Be OK (i.e. EGBOK). Soon, I’ll find the encouragement and solace I need to regroup and move forward.

Learning to think in this way is just one of the many skills and strategies I learned as a child to function and cope with a visually cluttered and ever-changing world. Those mottos and skills also helped build my confidence.

As a child, I recall being incredibly anxious and overwhelmed with changes in my environment such as visiting new places. Visually, there was so much going on—and world events added to the anxiety, often giving everyone reason to pause.

My mother would teach me strategies to stay safe, read the environment, and critically think about what I was experiencing. No doubt my CVI was on full throttle, and there were definitely daily events resulting from visual mistakes on my part. We worked through them, using our problem solving debriefs “for next time.” I learned the hard way to stay alert and vigilant—but that helped so it was worth it. Nowadays we’d say I was compensating for PTSD.

As I grew through school, I was encouraged to go on short adventures and then meet back up with my family at a designated time/place. (My mother later conceded that she had her eye on me, but she realized I needed to learn to navigate on my own.)

As I grew older, the adventures became bolder and each time I had to plan my route from door to door. Sometimes, I was encouraged to ride my bike to the other side of our community for an after-school activity. When we would go backpacking as a family, my dad insisted I use the map and chart our course. Likewise, when we drove across the LA Basin or on any of our road trips, I was handed the map book and asked to be the navigator. That helped build my mental map and reinforced how each of the map pages equated to the topography we were seeing.

I was taught to use public transportation and then go on my own to orthoptist appointments or to the movies with friends. Each of those experiences helped me build the confidence to eventually learn to drive. If I got lost, I learned how to think through how to get back on course, how to pull out the map book, or ask for directions safely so I could find my way home.

Then, I was taught to drive from one side of congested Los Angeles to the other so I could get career counselling at UCLA or take myself to study with world class musicians. Eventually, I went away for the summer to live with an unknown family. All that paved the way for me to go away to college. While in college, I traveled by myself extensively.

Those early confidence building adaption and travel skills have paid off time and time again. Since then, I have relocated by myself to new places far from family and friends. I have traveled and lived internationally by myself. Some of the greatest joys of my life have been those adventures. True, I still have my daily quota of CVI near-misses and miscues. Knowing how to use my long cane, navigating with it, while also sizing up a new place helps reduce my risks. And of course—I still have had to brush myself off and pick myself up from time to time. As a child, I didn’t have the blessing of using a long cane. Today, I never leave home without it. My long cane along with my common sense means that I still go on adventures and can actually look around to enjoy more of what there is to see rather than just a few feet ahead of me. It’s exciting to be able to see the world more broadly than I would ever dare without it.

Indeed, learning to work through my fear throughout my lifespan means that I have been encouraged and inspired to live confidently, courageously, and hopefully. My wish is that others with CVI can be supported so that they too can embrace their fears rather than be limited by them.

See also our feature White Canes & CVI.

My long cane along with my common sense means that I still go on adventures and can actually look around to enjoy more of what there is to see rather than just a few feet ahead of me.

  • Dragonfly
Everything is Going to Be OK
Everything is Going to Be OK

HELP SUPPORT US

Your generous donations will be put to immediate use in supporting our charity...

Donate Here

About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.