Homonymous Hemianopia - Building a Hemi Community

Introduction

David Clarke is a man who has been living with Homonymous Hemianopia for 54 years. This life-changing condition affects substantial numbers of people across the world, but there appears to be little in the way of support, information and community for people with Hemis.

He is hoping that, through his writings about his experiences, and outreach to professionals working in the sectors dealing with visual impairment, stroke, and brain tumours and injuries, we can start forming a Hemi community.

Main Digest

David Clarke writes...

In all the years I've had a hemi I still haven't met anyone who also has a Hemi. Mine was due to a brain abscess, though I understand there are various causes of Hemis.

My Hemi story starts five decades ago. Fate blew my brains with an abscess in a tiny island in the South Pacific without anything medical, the abscess responsible for my right homonymous hemianopia. Paradise Lost 1 is an impossible story that still hasn't ended, as you can see.

Despite this, fate returned 42 years later with Paradise Lost 2, as destructive as the other was the reverse. Yet it would never have happened if I didn't have a hemi, or if people knew about hemis, or if I'd known how to explain it in a few words. Instead, I was left suicidal, and my "therapy" was these hemi stories.

The first attempt was ridiculous, surviving only a class and a half of 'Beginners IT', spent searching for the cursor hiding in the blankness of the screen caused to my right hemi blank side. A little more adventurous, I started hemi practice into theory through the hemi images in Google, then 28 of them (or rather 14 as the others were repeats), the hemi diagrams close to 400. Hence the 307 hemi images shown in the website.

Google kept me going after my years of giving little attention to my hemi other than hemi computer phobia. I kept exploring and soon became confused. My half-eyes were still all over the place, except for my extreme right side - my right hemi blank side again. Whereas Google was almost always focused directly ahead, half and half. Before long, explanations were explaining themselves in their particular way, as they always had if I'd known how to look. Even introducing things I'd never considered hemi-based before.

Except I'm still talking to myself. Miraculously rescued from my abscess, I was left alone to work out my hemi as there was nothing that could be done about it: much the best way ahead for someone young and welcoming a challenge. Which means I still haven't met anyone else with a hemi, nor anyone responsible for patients with a condition that's caused theirs. I'm the lucky one, never again having to worry about the condition that caused mine.

I have written all of this entirely from my own hemi experience, unfortunately without contact with anyone else who also has experience of living with a hemi, but knowing that I cannot be alone.

We have compiled the "Resources" tab of the website to include details of the websites of charities dealing with visual disabilities, stroke, brain and heart conditions. It also lists research and reference websites, and a large number of hospital and other medical websites. I'm hoping this will be helpful to other people with hemis and people who care for them

We have also set up a Facebook group as a hemi blog for the hemi community to talk with each other.

At my age, time isn't on my side, and I hope that setting up this website will help to kick-start something which will survive me.

I have compiled these writings in a new website, hemihalfeyes.org

David Clarke

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Cite This Page (APA): David Clarke. (2023, October 13). Homonymous Hemianopia - Building a Hemi Community. Disabled World. Retrieved May 18, 2024 from www.disabled-world.com/communication/community/homonymous-hemianopia.php

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