Becoming Blind: What I Will MIss Seeing

[SmileAndThenDie]

oh jezz if i were blind i would probably sit in a corner and cry everyday then consider suicide :(

[free1here]

are you a Christian?

[tactiletheworld]

@free1here - I am a Buddhist. I was raised a Jehovah Witness, a Christian, a Catholic, and I just got tired of all these religions and found Buddhism when I traveled Asia and it's for me. But I respect Christianity, to each their own, whatever faith makes them happy and out of trouble :)

[HydroBlast56]

If you're blind, why don't you talk?

[jjovereats]

@HydroBlast56 Coz she's also DEAF.

[tactiletheworld]

@HydroBlast56 - it's because I am a proud Deaf person who uses sign language to communicate. If I can't see, I put my hand on top of another signing person's hands to understand their conversations. I use special machines and large-print marker/paper to communicate with hearing people. Its not the end of the world if I can't talk. :P

[Piggiesunshine]

How did you get the CC to work?! How did a person make subtitles for Youtube?!

[tactiletheworld]

@Piggiesunshine i had a friend do it for me and he added the file on the caption file. cool eh?

[rivkahchaya]

Your signing is really expressive. Did you rehearse, or were you just making it up as you went along? If it wasn't rehearsed, then I am really, really impressed. Even if it was, I'm still impressed, and I've seen some ASL storytellers and poets perform.

[dmfsmartfox1]

you are a beautiful soul to express yourself naturally me too i have usher s syndrome. those best eye doctors did say no to my surgery request. they were not sure if the surgery can save my sight in the long term but they were very firm to say no. period. i am still a long time vegetarian of 40 years. those eye doctors still recommended vegetarian diet to keep my sight stable for many years i have to deal with bad cataracts. i quit driving in 2003 after many years

[PandahhxD]

I love this video and i also love that you are so positive(: Your amazing

[rosesofsunshine3]

Thank you so much for the subtitles. I wish you all the best.

[Jonquillicious]

Hey, I really enjoy your video. You truly are a wonderful spirit. I'm deaf as well, and I find this video very inspiring and definitely thought-provoking.

[DeafPoet2]

Hi Again...I feel like an idiot...I just realized you may not be able to see me well on vp...if that won't work, then I apologize for being such a duh-m azz! If you ever need description of anything, ask away and I'm sure others and I will be more than glad to describe anything you want described. Stay strong as you are and hope to meet you one day in person! Hugs!

[DeafPoet2]

Hi Coco, your video was very touching. I can feel your trepidation n yet at the same time, you're getting yourself ready for a different journey/road to fight and overcome...I can see you're an overcomer. I understand that when you go blind...you'd like for any1 who handsign to you, to describe fully so you can visualize in your mind. I'd love to vp with you...so that you can see what I look like n when I write to you, you'll be able to know what I look like, any possibility we can vp? Big hugs!

[jkendrix1980]

WOW. I'm profoundly deaf as well, and sometimes I have problems with my vision, I am not sure if it's Usher Syndrome or not, but I do have severe migraines and at times my vision instantly goes black and I cant see anything, it varies from a few seconds and a few minutes. Also woke up a few times and could not see a thing (all black) but my vision returned. And over the years, I'm starting to notice its slowly tunneling, I should tell a doctor! But this is very touching, I subscribed! Nice story

[jjovereats]

@jkendrix1980 Go to the doc now!

[tactiletheworld]

As for subtitles, I will try to get that done. I just didn't realize how popular this vlog was. My apologies. I have very limited vision and little time to be online so I just throw all of my vlogs on here and be done. I'm not tech-savvy. Sorry for that!

[tactiletheworld]

Yes, I am fully Deaf, don't want a cochlear implant, can't speak for shit but I am fluent in more than 13 international sign languages. I have sight in one eye remaining, but it's like seeing out of a straw. The other eye is completely blind, from an operation in 2004 that damaged my retina. Oh well, shit happens.

[jjovereats]

@tactiletheworld That's, em, bad! If you go deafblind the only way you'll know about WHERE you are and WHY you're there is what you can feel. So your colleagues and friends want you to get a cochlear. Oh well, you'll know sod all about your world if you are deafblind. So sod-all will seem to happen to you. You'll need to learn to speak after the cochlear, and learn to interpret the auditory cues from the vOICe (V oh, I see E) program that are supposed to mean a picture...

[tactiletheworld]

@jjovereats - I actually do not want a CI. I was qualified to have one but I turned it down. I want to see again, but I don't want to hear. I love being silent..... But thanks for your suggestion :)

[jjovereats]

@tactiletheworld When in 2 years you gonna think "Oh darn I hate this life of silence and darkness." And to see again, and then only with black and white, if you're going non-invasive, you'll need the vOICe. And you need to hear for that. So if you want to see again, you might as well get a webcam, get a cochlear, and get a laptop w/ the vOICe. Blindness is less limiting than deafness. Having either is less limiting than having both. And once you decode the sounds they "appear".

[tactiletheworld]

Oh my gosh. I'm so, so sorry for not seeing all of this. Thank you for all of your positive comments and dialogue about my vlog. It was a special one and still is, and evidently for everyone here too.

To answer some people:

[TheNeonRabbit]

Wow, that's kind of frustrating since I can't read lips or ASL. Then again, maybe that's the point. I can see and hear so I'm unaccustomed to missing out on what someone's trying to communicate. I guess this is a little taste of the difficulties people live with every day.

[irkenequine]

Well said...I wish you all the best in such a difficult journey. If the rest of the world had an attitude as optimistic as yours we'd be in a better place.

[TheGenerationOfSport]

wait tht is deaf not blind

[BionicGeekChic]

I has an usher syndrome since I was born with profound hearing loss. Now I have a cochlear implant. That is save my life from many situation in dangerous environment. Cochlear implant is helping me hear a lot and changed my life. Of course, I know ASL/SEE and spoken language. Many usher syndrome people are receive CI to hear before get blinds in the future.

[reidrules45]

I understood very little of that.

I only know a few words in sign language.

Maybe you should put captions...?

[Number8Eigh8]

Just wondering, is ur vision gone now?

[M4rmon]

É nessas horas que libras é util

[AmberGooberPea]

what is the web address to your blog?

[A10thunderbolt9999]

if ur deph cant u talk???

[reidrules45]

@A10thunderbolt9999 Not all deaf people can talk. The ones who are born deaf or become deaf at a very early age usally never talk. If you become deaf after learning how to talk, you can talk. Most deaf children are very determined to learn how to talk and read lips so that they can communicate better with the hearing.

I'm not deaf and I don't know any one who is deaf (besides Kent but he can talk and read lips) so the only reason that I know this is because I read a book written byMarley Matlin

[reidrules45]

Marley Matlin is a deaf actress.

[jjovereats]

@A10thunderbolt9999 she's going deafblind. She has Usher Syndrome. She will have to use a cane and will need a cochlear implant to be taught spoken language so that she can hear the spoken equivalent of the signs she will miss seeing.

[Fourchetteable]

@jjovereats Or, since she already signs, she can use tactile communication.

[jjovereats]

@Fourchetteable Good idea. But suggest what I suggested to her using some form of tactile communication.

[A10thunderbolt9999]

if ur deph cant u talk???

[tiffyandpixie]

You are really an inspiration! I'm a hearing person studying to become an interpreter and you're message was beautiful. The thunder, lightning, sunset, starts, rainbow, freckles, all the colors...I was mesmerized. I wish you the best of luck and will be hoping you find joy and good experiences in your future!

[evildevilxxx16]

wow i feel you. cause im usher syndrome and deaf also. your journey was good!

[Margecam52]

People with ushers are both visually & hearing impared (to different degrees). I have two adult children with ushers...it's a tough thing to deal with...we have opted for stem cell procedure via Dr. Omar Gonzalez (check for him on youtube).

[AnimeShineChihiro]

I'm not fluent enough to understand the SL, but I hope you can take all of your obstacles by storm! Best of luck! :)

[piruetten]

I have usher syndrome type 3 and born in Sweden. However, subtitles would be great for us! Best of luck.

[cofd3]

hah, you cant read this!

[Heathaholic]

i think you'll miss seeing the rain, sunsets, and your children :) those are i think the most beautiful things in the world that i would miss seeing :D

[RYNOREAP3R]

ill summarize

she said all about her vlog, asking blog readers ask questions....about becoming blind and deaf....

[BettyBoop4ever25]

Miss,could you add subtitles to your video because many people are interested in your taughts,but sadly,we dont understand sign language.

[bastian74]

I'm confused. Why would a blind person use sign language?

[bastian74]

Never mind, I googled Usher Syndrome. I guess the title should say becoming blind and deaf. Best of luck. Subtitles would be nice for the rest of us.

[SuzyMac57]

people with Ushers (type 1) are born profoundly deaf and lose their sight due to Retinitis Pigmentosis later in life.

[ireneallman]

shes already deaf i think...

[EmmaDilemma91]

maybe they're deff too, doofas!

ever heard of Helen Keller?

[Ray77063]

Just FYI: A deaf person uses sign language, because many deaf people cannot articulate well enough for the average person to understand them. The SL may simply be for other people to see. It may be quite suitable for those blind persons who still have some vision. It's also more succinct than spoken English.

It's hard to overcome stereotypes society ingrains in us, like that all blind people have no vision at all, that SL is only for the sighted, and that all deaf have no residual hearing.

[Ray77063]

Bastian74, I like your comment, because it's the kind of question that invites dialogue. I appreciate your inquisitiveness!

Re: subtitles. Either subtitles or a transcript in the description would be nice in *all* videos, signed or spoken. I prefer transcripts, because they provide access for those using screen readers and they are much easier to add than are subtitles.

[u2fanlaura]

Could someone post a vidoe of what she is saying ?

[alexsuucha]

Hey Coco...

I went to Gally with you in 2004-2005.

You are hilarious. I never got the chance to meet you, but what are you up to these days??

-alexis sanchez

[mattheweason2]

Hi, my name is matthew, I live in florida, and i am 29 years old, I just wanted to tell you that your video was beatiful and it hit me hard since I too am dealing with deafblindness. I do not have friends or family that can relate nor do I know anyone with usher's. I normally keep to myself but find it harder and harder to function, I am reaching out to anyone like me, can you help?

[bek81]

Hi Coco, I'm an Auslan (Australian Sign Language) interpreter, and I also teach hearing and Deaf people some of the basics for communicating with and interpreting for Deafblind people.

May I please use this video as a resource to help some of the students understand the importance of describing whatever they can in as much detail as they can? (obviously I will voice it, or give a transcript, or relay into Auslan) I don't think I can put it better, myself. Thank you so much for posting this!

[ASL8306]

Also, I want to add there will be time in the future here on earth when blindness is no more, God promised it. Not trying to be preachy, just want to give good news, something to look forward to.-Isaiah 35:5, Psalms 37:10, 11, 29

[ASL8306]

Wow! You paint beautiful poems with your hands! I rlly enjoy your Vlog, I have few friends have Ushers, few more friends have other disease with hearing and vision loss. So this is interesting for me.1 my friends, has different disease, born HOH, became blind around 4 yrs old. She still remembers colors, still dreams in color at 21 yrs old, I'm sure u will remember color.

[brownskin2914]

When your time soon come or later, are you planning to learn Braille? so you able to read books, typing, write?

[xaqari15]

Zowie. That is a really powerful message. You have very beautiful and moving words

[AZombie1223]

Glad to know that I'm not one of the few that suffer from Usher Syndrome. I recently finished up a term up in Sands Point, New York at a school called Helen Keller National Center for the Deaf Blind. You might have heard of it but it had changed my life and prepared me for the hard road ahead.

As I always say to many people, if I can keep pushing through life, then anyone can.

[RachelQZ]

Am interested in your experience with Helen Keller Institute. How old are you? How old do you have to be to go? Do you have a vlog/blog abt your experience?

[AZombie1223]

I don't have a blog about my experience but at first it was very daunting and scary. I was 19 when I started in October of 2006 then I finished in June of 2007. Some stay a lot longer or some stay a few months. But overall, I had great fun, learned so many things about adapting to today's world with vision problem. I met many people up there and I would go again but it's always the first few months that seem so scary.

[DeafWolvesGirl]

wow i am support you i love support people who is blind deaf and blind and deaf

[transmaterial]

As much as I dont want to say it, at the risk of sounding like a flaming homo. This vlog made tears stream down my cheeks.

The more I watch your vlogs, the more profound they are. I sincerely hope I have the honour bestowed upon myself to meet you again in person.

[transmaterial]

As much as I dont want to say it at the risk of sounding like a flaming homo but this vlog made tears stream down my cheeks.

The more I watch your vlogs the more profound they are. I hope I have the honour bestowed upon myself to meet you again in person.

[MoonpoetessZ]

This was very interesting and intriguing. I hope you're doing well. I'm an ASL student at my college, so ASL isn't my native language and I had to watch it a couple times to really understand everything, but I felt it gave great insight to your feelings. Thanks for sharing. I think it gives people something to think about.

[bullzhitter77]

subtitles...hmmm...how about use The Law of Attraction...w/e u think about u bring about...thoughts become things...Law of Vibration, Law of Allowing, Law of Deliberate Creation...

youtube search;

The Secret 1st 20 minutes

[OliveJewel]

Wow. SOOOOOOOO beautiful you are!!!!!!!!

[TerriWaddellMotter]

very deep, you are my hero!

[alova]

Wish I knew what you were talking about :/

[tactiletheworld]

Are you hearing, Alova? Transcript coming up!

[alova]

sweet =D

[wowfreak1234567890]

are u really blind

[tactiletheworld]

yes i am. I have been diagnosed with Uhser Syndrome, which is deafness + retinitis pigmentosa in one. look it up. i can see a bit but will eventually become blind one day soon.

[SHAKOORK]

I am visually impared myself its hard for me to LIKE sighted people when I know their more gifted than I am I hope you don't feel the same way I do.

[tactiletheworld]

@alove now you can, it's transcribed. :)



[Dm7755]

Wow, I don't have Usher Syndrome, but I always was afraid of becoming completely blind (profoundly deaf here) but thanks to my paranoia, I learned how to feel the signed letters when I was a kid. Now, I can understand in the dark when most can't. It does help me feel better knowing that I still will be able to communicate if for some bizarre reason I become blind. Thank you for sharing your feeling, I always have wondered and now my curiousity is satisfied. Very powerful! Thank you!

[hyperasschiquita]

This video is poetic, touching and eye-opening. I have to say that you honestly make me view our world in different ways and I appreciate that. If you aren't able to, I'll help you to remember in the future chica ;)

[im4asl]

Thanks for sharing your personal insights on becoming blind. To lose vision is to try to gain trust in another person's interpretation of the world. Nobody can really "see" for you. Thanks for educating us all by sharing some of yourself. I know a leader like yourself will have a great future :)

edna