Living with Homonymous Hemianopia

by Jennie Carr 2 years ago in health

Understanding My Invisible Illness

Living with Homonymous Hemianopia

I have homonymous hemianopsia, which means I have visual field loss on the same side of both eyes.

I feel like there are a lot of assumptions or opinions surrounding my disability, maybe by people I know or by strangers. I’m not just missing my peripheral vision. I haven’t just lost vision in one eye (and I’m not saying those are easy things to live with at all, because I’m sure they aren’t either). My ability to see stops at the MIDLINE of BOTH eyes. I wish people could see through my eyes, just for a day, to understand what it’s like. My disability is invisible. I do not look like I have anything “wrong” with me, but the challenges I go through every day are ones that nobody understands.

The leading cause of homonymous hemianopsia are strokes, but can also be caused by tumors or traumatic brain injury. I’m under the TBI category, having had a brain abscess over two years ago.

You can’t “fix” my eyes—the damage is done within my brain, the health of my eyes themselves are perfect. I cannot wear glasses to help. I cannot have surgery. The communication structure going to my eyes from my brain is irreparably damaged. With a severe brain injury like mine, the likelihood of improvement is very low, and if there are any improvements they occur before 18 months post-injury. So, at this point, the damage I have left is what I’ll live with forever. People rarely notice or maybe they do and I don’t realize it, but I do have bad days. I get super dizzy and can’t focus on compensating. I don’t look enough to the left and people or things jump out at me. Having something jump out at me a year and a half ago was enough for me to be devastated for an entire day. Now, I might think about it for a few minutes at most and move on. It can be scary, though. It can also be frustrating because I look like I’m not paying attention or I’m being rude. It’s tiring feeling alone in my disability and pretending I don’t feel dizzy or I don’t have brain fog or I’m not exhausted. It could be worse though and I’m grateful for having some vision, and of course, the being alive thing. The being alive thing everyone talks about is a good thing, too.

It’s different than it was before, but you adapt and you move forward and it is what it is. I still have to enjoy life. I don’t know if I’ll get back on the bike—literally. I haven’t rode a bike in three (ish) years. I don’t know if I will be able to complete my bucket list. I really wanted to go bungee jumping, damn it!

The more I’ve accepted my limitations, the less challenging it’s been to live with them. The only thing I can do is recondition visual habits to adapt to my surroundings. Your world looks different than my world. I’ll probably never be 100 percent comfortable in crowds (sometimes it feels like I’m in a funhouse). I’ll walk into stuff and spill drinks more than the average person. I’ll apologize more for being in someone’s way. I’ll take longer to read. I’ll never be able to tell if a picture is hung straight and don’t ask me if your eyeliner is even because I don’t know! But, I can do a lot of things that I couldn’t do two years ago. I can go to the driving range and rock it, even if I have to really scan to see where the ball went. I can watch a live performance, but it’s easier if I’m seated on the left side of the theatre. I can have a glass of wine with my friends and dance to 90s top hits. I can push a shopping cart with two toddlers around on a Saturday at Costco. I would say that’s pretty darn impressive. I can do a lot more than I thought I would be able to do when I first lost my vision. I can do a lot more than I could a year ago. The ‘I can’ list keeps growing, as the ‘I can’t’ list gets smaller. The brain is a powerful, amazing, and adapting organ and I’m even more powerful and adaptable. I have power over my body and power over my happiness and I choose to be grateful and to live life like I would have before partial vision. I chose to be confident in myself and know that I can.

I think I can. I think I can. I know I can.

Jennie Carr
Jennie Carr
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Jennie Carr

I’m a mom of two and a brain surgery survivor. My husband has Type 1 Diabetes, my oldest daughter has Celiac Disease and my youngest has Duane Syndrome. Writing allows me to share my journey of recovery, acceptance and self-discovery.

See all posts by Jennie Carr