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Living a life with CVI

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.

Let me ask: Is CVI like a dragon or is it more like a dragonfly?

Mythological dragons loom out of nowhere. They are frightening and disrupt the hero's quest. In contrast, dragonflies serendipitously appear as if to remind us that change can be hopeful and good. Both images apply to living successfully with CVI.

When CVI seems like a dragon, relating to the world can be very daunting! Yet when properly equipped, someone with CVI can often slay that dragon and then be transformed to emerge like a dragonfly.

My earliest memories are colored by my undiagnosed CVI. Discerning how to interact with an uncertain visual environment took a lot of encouragement from my folks in the era before CVI was understood.

My vision's miscues were constant whether it was walking, running, learning to climb, or figuring out my colors, reading, and math. My legs were equally iffy so coordinating the two often tripped and tangled me up. Furious with my body, I would pick myself up, regroup, and then try to take off again.

Juxtaposed with these struggles, were positive learning environments where I was helped to succeed in ways that I could. I was taught how to consciously control my vision and my legs. I was encouraged to flourish in ways I could and to leverage my uniqueness. As I reached adolescence, those dragonfly experiences prevailed over the dragon ones: my hidden CVI dragon went asleep.

Unfortunately, as I have aged my CVI dragon has been re-awakened. My quirky and unreliable vision issues can no longer be suppressed, no matter how much I try. My CVI dragon still likes to trip me up, so back to being mindful of every step I take. This awareness led me to the vision professional who helped with my retrospective CVI diagnosis.

Much like the resting dragonfly that darts off in a new direction, discovering my CVI has been grounding. Understanding and knowing about it allows me to accept how it impacts me. With help from low vision professionals, occupational therapists, neuro-physical therapists, and specialists who work with the visually impaired community; I have been able to transform my hidden dragon into a beautiful dragonfly.

Recently, I have met other adults who have acquired CVI. They too strive to understand their CVI. Thanks to CVI Scotland's rich body of knowledge, we now have a start point. That empowers our self-advocacy as we talk with our support systems and vision professionals. Like a dragonfly, we pause, assess, adapt, and then fly again.

Regardless of how or when we acquired it, CVI is with us for the duration. How can we use the dragon and dragonfly images to learn how best to slay the dragon, cope with its unpredictability, dispel its fury, and through the process pivot and transform our brain's unique capacity so we can emerge into dragonflies?

My goal with these blogs will be to help the CVI community appreciate and explore the lifelong process of adapting to and living with CVI. Hopefully, I can shed some light on what it is like to live with CVI throughout life. With creativity and adaptability, we can all be dragonflies who pursue our own unique trajectories.

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