A searingly honest blog by a Deaf man who is losing his sight due to Usher Syndrome has been shared by numerous Deaf people on Facebook.
In the blog, Edan Chapman outlines to his friends why he’s had to withdraw from some social situations, explains how it feels to lose his sight when he loves photography and art, highlights the people who don’t believe he is blind, and details his frustration at having to go through a never-ending administration process to receive a payout after quitting his job. And much more.
Biggest of all, he asks the Deaf community to change, and become more accepting of people who are Deafblind or are losing their sight.
This is a must-read, to gain more of an insight into his life and many others who also have Usher Syndrome and/or are Deafblind.
Read the blog here: https://edanchapman.wordpress.com/2016/01/22/an-end-to-my-silence/
I’ve written a few articles for magazines trying to be positive and encouraging. I’ve received some beautiful messages from people, not just those afflicted but family members and peers stating that they have been given new hope. That’s wonderful! That makes me so happy, to be able to give others just that tiny bit of relief.
But I need others to realise that I need help too. Just because I try to be strong doesn’t mean I am. If I don’t come to your party, your dinner, your barbecue… It’s not because I didn’t want to. It’s because I didn’t sleep at all the night before and can barely see. I would be a terrible guest. It’s because I saw a video of something so beautiful I ended up crying for half an hour at the pain that I will never see it again. It’s because I read an article that made me feel small and petty and all my motivation and energy simply left me right there and then. It’s because to get to your house would take everything I had inside me and over an hour on public transport, being hyper-alert and vigilant and then when I’m there I simply sit in a corner and try to keep up and then I have to repeat all of that just to get home. To go to your beautiful party means I have to sacrifice the next two or three days lying in bed completely exhausted.
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