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Blind and Visually Impaired Community

Full History - 2019 - 01 - 27 - ID#akcp6m
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Would you rather have no vision or constantly feel unwell? (self.Blind)
submitted by fairlyfairies
Hypothetical question: Would you rather have no vision or constantly feel unwell? Like, if the disease that took your vision could be treated, but the treatment left you feeling unwell all the time and interfered with the quality of your life, would you rather forgo treatment and loose your vision? Why or why not?
retrolental_morose 7 points 4y ago
Fascinating question.
UK research has shown people fear blindness above cancer. So I suspect the question here will be, "how unwell?"

Growing up totally blind i'm afraid I'm a little biased. Eyesight isn't necessary for happiness.
Drumdevil86 1 points 4y ago
I really can't imagine being happy while being blind. Almost everything I do revolves around eyesight. Even the taste of food is influenced by the way it looks.

Could you try explaining me what exactly makes you happy? What is your daily routine like?

I imagine it would be such a different life.
retrolental_morose 3 points 4y ago
Of a weekday, I get out of bed around 6:00AM and grab a coffee. I grew up on instant, but ever since a friend introduced me to fresh ground, my morning jolt comes from a bean-to-cup machine. Breakfast is generally a one-handed affair: a banana, cereal bar, sometimes a smoothie or yoghurt drink. I get that down me whilst taking the dog for a walk, a short round-the-block job if it's wet or particularly cold, or a longer run around the park if it's dry. If the latter, I take a crossword, sudoku, newspaper, magazine or novel to have something to focus on whilst the dog is running around the park. These range from 10 to 45 minutes, depending on weather, how well I've slept, whether the dog will otherwise be having exercise, whatever else needs doing before work. Generally, this is not a time when I communicate with other people very much.



I aim to be home by 7:00AM. I put the kettle on for the wife's hot drink, make myself a second coffee and take both upstairs. Unless I've got a gripping chapter to finish, the coffee goes into the bathroom. I wake up my daughter and tell her to get ready for school. I deposit the wife's instant coffee (don't ask) at the bedside. Casual clothes (generally shorts and a tank top, perhaps jeans in cooler weather) are hung or dumped for laundry. Sometimes to music, I shower, shave if necessary, finish the coffee, clean my teeth, and free up the bathroom for the rest of the family while I get dressed in my bedroom.



By 8:00AM I am dressed for work. "Smart" trousers, a matching shirt, a tie if I am not going to be disassembling technology (I have previously been known to tighten up a computer casing with the end of my tie dangling inside). Very occasionally I will need a full 3 piece suit, such as for trips out of the office for special circumstances, but these are rare and often mean the whole day is changed around as I generally need to be on an early train for that sort of thing. So normally it's just the regular work clothes. By this point, my daughter is generally dressed and doing her teeth, face and hair.



The wife will have usually made lunch, so I head to the kitchen. I might unload or reload the dishwasher, pick up the dog mess from the garden, make my or my daughter's lunch if for whatever reason it hasn't been done. This is usually done to music or radio news. If there's none of that needs doing and the kid is ready, we sometimes walk up to school early so she can attend breakfast club. If the wife's not up for the regular drop-off and we don't have time for a walk, I'll drop her in on my way to work. This rankles because breakfast club has to be paid for, and I leave for work at 8:30. This means she only attends for 10 minutes if we leave on time, costing me £0.15 per minute.



The journey to work can take between 12 and 20 minutes, traffic depending. I get a taxi to work, part-funded by the government because of my disability: I contribute a sum calculated to be the equivalent of running a car, and they pay the rest. I look over my diary, catch up on social media, answer emails or read during the journey.



15' minutes is about average for the trip, so I'm generally at my desk by about 08:50, as a rule. I see people for 30 minute sessions, for the most part, every morning. Sometimes people have me for an hour, occasionally I see a couple of people for 15 minutes each. This goes on with a 20 minute break at 11:00AM, at which I take the dog to relieve himself, refill my water bottle in the staffroom and have a snack brought from home, Often homemade by the good wife.



The second half of the "morning" follows the same pattern. My lunch break starts at 1:00PM. If I have brought lunch, I tend to eat in my office whilst watching Netflix, reading, or enjoying whatever televised activities that may appeal (I'm a fan of Cheltenham horse racing, rugby, prime ministers questions and the rest of the UK political scene). If I don't have lunch I will walk to a nearby supermarket with a cafe and either eat there or bring something back.



My afternoon work is in a different office with a colleague. We field queries from people phoning, emailing or turning up, get sent off to do various things around the site, or otherwise maintain the computing infrastructure of the buildings, buy in new stuff, set things up, reassign hardware, develop in-house software, diagnose problems and generally provide IT support. Sometimes confusing stuff beyond the pair of us get sent up to a team of off-site consultants, or we'll book repairs and make sure the guys come in and do a decent job.



I finish at 4:00PM. Occasionally I will have to slip off 10 minutes early to collect my daughter from an after school activity, but for the most part the wife is on the ball. School finishes at 3:15, but luckily there's an after school thing 4 days a week, so it's even rarer I have to zoom off any sooner.



If I get home and there's nobody about, there may be instructions: “put the oven on when we leave dance class”, “ mash half a bag of potatoes”, “don't touch the slow cooker”, “drain the pasta”, “go and pick up some milk”, “hang the laundry”, “put the towels in the drier”, “tidy the kitchen”, “vacuum”. Sometimes there's nothing at all, and I can put my feet up with my final coffee of the day and watch something. If they're at a shorter thing, it's an episode of something, or maybe even a radio play. If a longer activity, a movie or double-episode. I’m a big sci-fi and horror fan, so there’s always something to watch and, if there isn’t, I’ll read.



Weeknights are generally at home. We eat and clear up, do homework with the little one, run through this week’s spellings, she reads to us and one of us reads to her at bed time. Sometimes we’ll play a game of something, but generally she’s so active outside of school that it’s home for food, reading and homework, bath and bed.



When she’s asleep, I either catch up on work from the morning or prepare things for tomorrow’s morning people, do some work for the charity I work with (this includes online videoconferences once a month and a host of paperwork and other ephemera) or if there’s none of that, the wife and I will have some time. We’ll usually watch something together or, if she’s particularly absorbed in something trashy, I’ll massage her back, shoulders or legs whilst listening to something in my own headphones. We’ve an ample supply of various creams, oils and lotions and I think we both find the wind-down time relaxing. If it’s early enough and I’m still awake, I take myself for a long bath. On days when I have earmarked a new book, I will often sit myself down with said book, a pot of tea and a huge plate of snacks. Book depending, I can be there until between 11:30Pm and 4:00AM. The latter is obviously less likely, but I have been known to spend a whole night with a good book, which has energised me for the day ahead.



So there you have it, that’s a typical weekday. How does that compare to anyone else? Am I really weird? I feel a bit self-conscious now.

Drumdevil86 1 points 4y ago
Thank you so much for the detailed story! It baffles me how your routine is so barely different from that of the average person. It's hard to comprehend for me that living without eyesight is probably natural to you.

Is that the same way for you? Can you imagine needing eyesight to get around?
retrolental_morose 2 points 4y ago
Oh absolutely, there are times when busses stop a little off the usual point, or there's junk on the pavement and being able to see would help tremendously. But I've become resigned to it after so many years, and so much of what I do in terms of being a parent, doing my job, my charitable causes, reading and watching movies etc isn't really impacted day-to-day.
estj317 2 points 4y ago
I have both now very bad allergies and very small amounts of dust can cause problems but anyway, yeah, no blind all the way. I can do anything. It’s about overcoming your blindness.
the9thpawn_ 2 points 4y ago
No vision all the way. Chronic pain is a bitch.
annibear 1 points 4y ago
Blindness. Theoretically my disease can be treated--I actually saw a clinical trial for bone marrow transplant with it--but all of the treatments end up fucking you up more than the blindness does, imo (I understand this is a very personal choice). A good percentage of the time it doesn't end up working anyway--you can choose to spend a lifetime on chemotherapy that may not work and will cause a whole host of side effects (including neuropathy, and the idea of having peripheral neuropathy AND being blind is unbearable to me since I love reading Braille) and still lose your vision anyway or accept it and learn to be blind. As it is, the treatment I tried and failed when I was younger gave me additional health issues--including, ironically enough, raising my intraocular pressure (no glaucoma yet I don't think though).
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