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Blind and Visually Impaired Community

r/blind

Full History - 2015 - 12 - 15 - ID#3wyz38

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Documenting How RP Impacted My Life (self.Blind)

submitted by matt_may

http://rp-vip.blogspot.com/2015/12/losing-well-part-1.html

I've been documenting how RP has impacted my life over the last 16 years. I looked through everything I've ever written about RP and pulled it together. As I go through it, I'm posting, in chronological order, what happened. I'm trying to show the process, the impact, the narrative of a disease.

I hope people don't think this is shameless promotion. I was recently spent a week at the State's campus for the blind and I realized a lot of people could use the context of what I've been through. I also don't make any money from my blog.

Trying to do a post a day but not sure how long I can keep up that pace. Think it's really good for people who just found out about vision issues.

clickmyface 3 points 7y ago

Thanks for sharing! Will be interesting to see what all has happened (and if your wife is still your wife...). I'm sorry for all that you've gone through; hoping you feel strong now having gone through so much.

matt_may [OP] 2 points 7y ago

Thanks. You can already see what happens. Parts 1 - 4 are up.

JusBis 2 points 7y ago

I have RP as well, I'm at the stage where at night I'm a different person then during the day, like a revirse vampire. It made me feel good that you also have to deal with the "faking" comments. Well made me feel good that it's not just me haha. I still don't know how to deal with these situations. Some times I can laugh it off but other times It cuts deep, to think someone would fake this unwanted attention blows my mind. Also I found out you can't be blind on Halloween without everyone thinking your cane is part of your costume. "Im just a baseball player not some funny blind pun on it".
Thank you for sharing this, gave me some good ideas of what to look for in my future.

matt_may [OP] 1 points 7y ago

So glad you like. I want to finish it and bring it up to present. I eventually had to go on disability and fight with my insurance company.

78isthewhat 2 points 7y ago

Read every word. Wonderful, thx

matt_may [OP] 1 points 7y ago

Thanks! Still a work in progress. Trying to figure out how to end on a positive note.

78isthewhat 2 points 7y ago

Read every word of it, really enjoyed it. You're a pretty inspirational guy.

matt_may [OP] 1 points 7y ago

Thanks! Still putting updates together. Trying to figure out how to end on an positive note.

charliemyheart 2 points 7y ago

Thanks for sharing.

matt_may [OP] 2 points 7y ago

Thanks for reading!

fastfinge 1 points 7y ago

As long as it's relevant to the community, as yours is, a little shameless promotion is perfectly fine here. :-)

matt_may [OP] 1 points 7y ago

Thanks. If I can pull enough material together it might make an interesting (short) book. But not sure how to end it because it's still going on. I still don't know the full narrative of the disease in my life.

fastfinge 1 points 7y ago

Well, if you self-publish through Kindle, you can continue to update the ebook, and people who purchased it will get the updated version. I don't know exactly how you do that, but I know Kindle allows for it, as I have several e-books that the authors have updated multiple times. So that might be something to think about.

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