Experiencing Life Differently with Vision Loss

Our world is very vision-centric. Nearly all information we obtain comes from using our eyes. We use them to read, to operate a computer and a phone. We use them to scan objects in a room, people in a crowd. We use our eyes to guide every moment, whether choosing an outfit for the day, preparing a meal or making our bed. We use them to have a conversation with someone, to understand their emotions and their feelings.

A person with vision loss often struggles with many different activities. Those around them, family, friends, or caregivers often do not understand that even simple tasks can be challenging.

My diagnosis is Left Homonymous Hemianopsia.(LHH) On May 1st of this year, a craniotomy to debulk a large mass in my occipital lobe resulted in this condition.

Hemianopsia is the disruption of visual pathways within the central nervous system, resulting in the loss of half of the vertical visual field. This condition typically occurs due to stroke, brain tumor or traumatic brain injury.
Homonymous Hemianopsia is defined as diminished vision or full vision loss in the left or right half of the visual field of both eyes

To be clear, this is much bigger than loss of peripheral vision. For me, the field of vision remaining is out of focus, distorted and complicates some of life’s simplest situations.

The good news is, the pity parties are behind me. It was a rough few months in fact I may have met the most broken version of myself. Finally, swallowing my pride, I cast my net as far as it would go and walked down the path of asking for help. Over time, an army of angels circled around me, the pain began to soften and strength and courage arrived.Beyond blessed Just doesn’t seem like a strong enough descriptive for the help I received and continues to surround me. The stories are abundant and continue to grow around love, kindness and support. I am incredibly grateful, every single day, for the beautiful humans in this world who continue to remind me that no ask is too big. With your ongoing love and support, anything is possible, including climbing mountains!

A few of my many frustrations and challenges…

If our paths cross on the street, at a restaurant or an event, please know that I may not notice or even recognize you. My friendly personality has not changed.

I no longer own a vehicle so I’m on foot, seeking a driver or waiting on URide.

Going for a walk in an unfamiliar place can be very disorienting.

I MISS SPORTS, in particular, Pickleball! My bike is collecting dust and my downhill skis walked away last week.

It takes me approximately 3X the normal amount of time to accomplish pretty much everything.

Thanks to an online support group of people around the world with HH, I am gleaning various tips and tricks to help improve my quality of life.

What’s next for me? Healing – my physical body, my brain, my heart and my soul. The grief I have experienced as a result of this loss has been overwhelming. One could argue that my lifestyle has been one of health and wellness for many years however it’s time to take things to a new level. I’m learning and remaining open as I walk this path, there are so many offerings available that I have yet to explore.

It’s time to invest in me. Rest, breathe, slow down and simply BE.