My Struggles and Challenges of being a Visually Impaired Person | BirdNerdSophie

[@jonfranklin18]

My story. I was born with transposition of the great arteries and had to have life saving open heart surgery @ 6 weeks old. I then developed congenital cataracts, which I had removed @ 6 months (I have since read that cataracts can form after a serious illness and I was in an incubator and a head box to give me oxygen just to keep me alive due to my heart condition). Anyway, after having the cataracts removed I was left with aphakia in both eyes, but with a delay in the cataract surgery, my right eye is far stronger than my left, which I can barely see out of, and have amblyopia in both eyes, left worse than right, and also have nystagmus in both eyes. As this was in 1984 I was told I wasn’t given any lens replacement because, at the time, they didn’t think they’d last a lifetime so left me without lenses. Consequently, I had to wear bifocal glasses as a child (which were like fish bowls and caused me great distress on hot, summer days) and made me a target for bullies at school, hence my lack of friends and social anxiety now. When I turned 20 in 2004 and realising that I was growing up and wanted to give myself at least half a chance of attracting girls (which never happened due to confidence issues) I switched to Extended Wear Contact Lenses, which were soft lenses I wore all the time and even slept in, which regular checkups and new lenses being ordered by the hospital. My consultant at the time did say about having an IOL but was happy with the lenses so kept with them. However, in 2017, I made the decision to investigate the IOL Surgery, as I was tiring of the contacts as I had no-one to change them and keeping them looked after was starting to become a burden, but at the same time the hospital optician went on the sick and as they didn’t have a replacement I couldn’t get any lenses. When I finally did a few months later, it was too late as I had developed Keratitis from over wearing of the lenses I couldn’t get replaced, in my right eye, the only eye I see out of so was rendered effectively blind, which terrified the life out of me and is the worst thing I’ve knowingly gone through, and ended up in a specialised eye hospital for a week receiving treatment to fight the infection. Whilst my sight was saved, the infection left a permanent scar in my eye which has made my vision worse, and so had to go back to glasses (I’ll never wear contacts again and encourage everyone else to not wear them). Exactly a year later, after having investigative tests for an IOL I was found to have had a detached retina in the same eye (my right eye the only one I see out of) and whilst I had successful surgery, due to the silicone oil used, it left me with glaucoma and now have to take eye drops for the rest of my life to keep my eye pressure down. In 2020 my new eye consultant said it would be dangerous for me to have lens implantation surgery as due to me having no lens in my eyes for 38 years, the shape of my eyes has changed and he would have to put the lens on my cornea, which was damaged by the keratitis, and is reluctant to do it in case it damages it further and / or my body rejects the implants this meaning I’d need a corneal transplant and thus leaving my vision worse, so I’ll be aphakic for the rest of my life now. After what I’ve been through I’m glad of what little sight I have, but my dreams of having my own lenses in my eyes seem over now so I’ll have to stick to thick heavy glasses and a constant change between reading and distance, which is a pain, but far preferable to contacts which nearly blinded me. To those who can have the IOL, yes I know it’s scary, but you should have it done, at least you’ll be able to, some of us aren’t as fortunate to have that option not unless, as my consultant says, technology improves in the future to give me that option.

[@fo_viv4779]

so heres my story im currently in year 11 doing a research project about visual impairment because of its connection with my life, when i was around 6 or 7 i had something wrong with my eye and i couldnt see properly with one eye, i still remember the pain i used to face everyday because of that eye, thank god everything's fine now i had to put these eye patches on my weaker eye for almost 2 years and your video really helped me with my research project thank you for your help and may god bless you

[@BirdNerdSophie]

Thank you, I’m glad you found the video useful!

[@WellEyeNever]

Great video Sophie, I can empathise with all of those points. Being unable to drive was a big problem when I used to live in the Westcountry, beautiful as the area is, as public transport options in my neck of the woods were very limited. So I'm very lucky and thankful that we had the opportunity to move to London, as being able to use a Freedom Pass on the Tube and buses has made so much difference, enabling me to get out and about so much more. I've had confusing moments crossing the road too. Occasionally drivers will stop and apparently wave at me to go, but I can't see them through their windows to notice that. Flashing their lights at me would be more obvious. And I'll walk further to get to crossing points, bus stops or to the back of long queues of traffic too, if it feels safer doing so. Spotting hazards like cyclists, overhanging branches, chains between bollards, etc is also difficult sometimes. My employer's been great - they're a local authority, so they're obliged to be really, but I've had no major problems with them and everyone in my department is very accommodating, we all get on very well. And I'm very light sensitive too, I use green tinted sunglasses designed for migraine sufferers that work well for me, they seem to take the worst of the glare away.

[@BirdNerdSophie]

Hi Glen, thanks for your comment! :) I grew up in London so I know the joys of a Freedom Pass - I got so much use out of mine! I am still grateful to just have the bus pass though! Glad I'm not the only one who has issues seeing drivers waving for me to go or walking further to cross safely because sometimes it feels like it's just me and it makes me feel really stupid. I also haven;t got peripheral vision as I only see what my glasses show me, so it takes me a few seconds longer to check each way before I cross and I feel like I get some funny looks for that too! Good point about the hazards, I have been partial to a branch or brambles in the face on occasion because I haven't seen them lol! I think in general, public sector jobs are more accommodating to additional needs as there seems to be more consequences for the way they treat people. It's great that you have found a workplace which is so understanding! :)

[@55098]

Oh god Hun 😔 I know your feelings as I've gone on from being fully sighted to becoming visually impaired. I hate having to live like this now but we both got this Hun we need to remain strong.its great to share and make us aware about our impairments. Big hugs. Sadly I cannot drive either 😞 but that's ok. My buses have voice recognition once it stops it tells you which one it is and calls out the stops.i have to be careful crossing as I have no left vision so have to turn my head that way to have to look what's coming

[@BirdNerdSophie]

That's great with the buses calling out the stops - they do that in London here, but not in my area which is a shame! Crossing the road can be challenging, but I am trying to remember that taking a little extra time and care will help me in the long run! Thanks for taking the time to comment and I hope you have a great week! :)

[@55098]

@@BirdNerdSophie thanks hun and you too 😊🇨🇦

[@Aussie-426]

also the UV lights...they don't seem to bother anyone else.

[@Viridiana_0]

Wishing You the best. My husband lost his eyesight last year bcos of diabetic retinopathy, he was an avid gamer and nerd, fan of technology and gadgets, now he has only 5% sight in left eye, almost nothing in right one. Stay strong, i love you two - you guys recall me and my husband.. We are planning to do a channel about blindness and diabetes. Maybe one day we'll meet for some video talk :)

[@BirdNerdSophie]

That sounds awesome - let me know if you se up the channel! Also not sure what sort of games you are in to but Assassin's Creed Valhalla and Fortnite are some of the most accessible games for blind and visually impaired people! :)

[@dot9000]

My partner had an employer tell the supervisors he was deaf - they assumed he was just because he was blind in one eye. Go figure.

[@BirdNerdSophie]

That's so ridiculous! Why can;t people act normally around those of us with disabilities, and just ask politely if they want to know anything else!

[@ornithologydude8649]

Eye pain is horrible! I used to get it and i would have a horrible pain shoot through my eye 😥

[@BirdNerdSophie]

It's not nice at all!

[@darrellq6954]

I was born with congenital cataracts as well. I was fitted for rigid gas contact lenses at age 10....have you explored that route? I can drive....

[@BirdNerdSophie]

Hey Darrell, thanks for your comment! No it’s not an option for me as my eyes haven’t developed properly and they removed the lens holder in my eyes when they took the lenses out! It’s great that you were able to get lenses and you can drive! 😊

[@darrellq6954]

@@BirdNerdSophie i think you are misunderstanding....I never got a lens implant...I am still aphakic....my prescription is like +15.....they make contact lens that strong...any ways, glad to meet someone else born with cataracts.....my two boys have cataracts as well.....I don't think of it as a disability....I look at it as a small inconvenience.....

[@BirdNerdSophie]

@@darrellq6954 Ah I see what you mean! I am unable to wear contact lenses for visual purposes now because of one of my other eye conditions! Plus even with my prescription, my distance vision is still poor, but it's okay - I manage! I have met a couple of people who were born with cataracts - whilst I don't wish it on anyone, it's nice to meet people who know what it's like!

[@darrellq6954]

@@BirdNerdSophie Yes, we need to keep a positive attitude....We should be grateful that we can see a little. rather than be fully blind...We still can enjoy a nice sunset, view of the ocean, and see the faces of our family and friends.....Keep your chin up at all time....:) Nothing to be ashamed about. I did get teased alot for wearing thick glasses in grade school. But it made me stronger...

[@thewritingsisters]

Great video omg when people guide me with over there I see red I hate it that’s not helpful.

[@BirdNerdSophie]

Totally agree with you there! I think some people just don;t think and it can be really annoying!

[@thewritingsisters]

BirdNerdSophie my parents do it ALL the time I hate it my response where is over there and try not to scream

[@BirdNerdSophie]

@@thewritingsisters oh no, that's a shame :( people often don;t think. Thanks for taking the time to comment on my video - hope you have a great week! :)

[@thewritingsisters]

BirdNerdSophie you too love your videos should def try to collab thinking of doing a series on what we as the blind:vip would like sighted people to know.

[@BirdNerdSophie]

Thank you, I am enjoying your videos too! Ooh yes that would be fun! 😊