How Much Can I See?

For many of you out there, you’ve asked me this question over and over again in the span of my life. How much can I see with Usher Syndrome at different stages?
So I present to you a vlog about my CURRENT state of vision.

In the past, I was mortified to answer this question. Not anymore. I’m more confident and willing to announce to the world how much sight I’ve lost and educate others about the ranging levels of Deaf Blindness.

I am currently working on a transcript for this vlog… but too impatient to hold the video so here it is on YouTube!

YouTube Link: How Much Can I See?

tactile love!

Advertisements
This entry was posted in Videos. Bookmark the permalink.

20 Responses to How Much Can I See?

  1. Catherine says:

    Wowie that s awesome! You are so brave to tell us all! Yes, I am very curious about Usher’s because I plan to study about eyes.I plan to take contact lens concultant and license test. Thank you!!

    CMS from Boston

  2. Hi Coco,
    I cant find your email so I would like to send your email with My Video 🙂 so If you see My email pls Send my email so I will Return send you my video . Hope hear from you as soon …
    Thanks
    Sara or Shrimpy 🙂

  3. That’s beautiful, Coco! Many thanks for sharing. Mwah!

  4. Lantana says:

    Hi, Coco, you have a beautiful smile! And dimples to go with it!

    I have mentioned my being close to the Mansfield family, where 3 of the children had Ushers. I am not sure about their parents. Danny and Colleen went to our school, I think Pauline went to public school, I am not sure.

    Coco, did you live in a dormitory? Those of us who lived with Coleen knew exactly what her limitations were. When we tapped her on the shoulder to correspond, we knew that it would take her a little while to get oriented. And she frequently bumped into us, so we learned to give her lots of space. We had to be careful about leaving something in the middle of the floor, like a suitcase — any item that was not supposed to be there was a booby trap for Colleen. She had a great personality and like you, she had a beautiful smile!! ‘An innocent smile, not something that is faked and “borrowed” from someone else.

    I think this topic of Ushers will go a long ways and I am going to be one of your more frequent readers!

    Thanks!
    Lantana
    Lantana’s Latitude

  5. Lantana says:

    Hey Oscar! I love your NEW LOOK. Very, very attractive young man.

    Lantana
    Lantana’s Latitude

  6. Oscar! I was moved by your vlog comment, thank you so much. I’m glad to see that my “regular conversations” have inspired people – and help me meet more positive Ushers like you. I hope you keep on blogging/vlogging.

    Lantana, wow. Small world. I met Polly in Seattle in 2005 while I was working at the Lighthouse for the Blind there. She sat down with me and told me about her friendship with Helen Keller. I found that so inspiring and I have very high respect for Pauline. Thank you so much for sharing your experiences with the Mansfield family.

    Tactile love to my readers.

  7. Anonymous says:

    I hope you will continue to vlog (with text, of course) and blog for a long time. 🙂 You seem like a lovely person.

    Thanks for explaining your vision.

    The Deaf church here includes a D-B person in their congregation. He says prayers in the service once in a while. I don’t want to mention names at this time.

    I work in a dorm at a school for the deaf. I’m thinking of making tactile signing into a game for the deaf kids to participate and enjoy while blindfolded. Any ideas?

  8. You have a great idea, already!!
    Thanks for the idea for a next vlog. I will tell everyone about different activities to do to understand Ushers more.. and DB folks.
    😉

  9. Dianrez says:

    Your sweetness comes through clearly in your vlog! Wonderful explanation of Ushers and how much you can see…one question came up as I watched…how long does it take to learn hands-on communication? Does it take a lifetime, or was it a matter of months? Great work, Coco!

  10. Mia says:

    I see that you have own positive, i am not familiar with usher syndrome. Just that i want to know how blinddeaf people handling doing that. I glad that you provide us the many good example and Hope more video of you soon. Thanks!

  11. ASL Risen says:

    Thanks so much for your AWESOME video clip. I hope you will enjoy your trip in Africa and share with us about your trip on the video clips.

    I have a friend that lives in Seattle but I am not sure if she still live there. Hope she is doing okay. Shawn

  12. pany says:

    An INCREDIBLY fabulous vlog!!! Correction: I am from California, not New York!!! CHeck out my new vlog post at http://www.pany.wordpress.com!

    -Ginny

  13. Cousin Vinny says:

    Thank you for sharing your story about your condition with us. It does give me a better insight into your perspective on all things covering the DB universe.

  14. Cy says:

    Thanks for sharing! I have a student with Usher. His parents refused to tell him he has Ushers until he turned 13 last year when his classmates started commenting about his apparent limited visual ranges such as not seeing someone wave hand from his side (peripherally) or afar while his head is slightly turned downward or upward. His parents finally told him, but he is still in denial. Always tells us he can see just perfect. He is having difficulty coping with knowing that he has Ushers.

    I had a childhood classmate who was discovered to have Ushers quite late in his life – around 14 – while playing football. His football coach was watching him catch the passed ball and was horrified that he apparently didn’t see it when it was so clearly visible and bumped into another player that was so visibly there right in front of him. He broke his arm in the process. At the ER, he shared what he observed and recommended his parents to have him tested for vision limitations. They did it right there at ER – they diagnosed him with Ushers right there. Apparently it was late onset because he did not display vision limitations prior to that accident. By his senior year, his was significantly reduced, and by the time he graduated from college, he could not drive at night. Now, 26 years later, I understand he is basically blind – has a very limited range of vision. The sad thing about this guy is he refused to learn to converse in ASL by feeling hand movements or learn to read in Braille. He is pretty much isolated and bitter.

    Watching your vlog inspired me – you’re able to get past that! I don’t know if I could if I were to face having Ushers knowing I would eventually lose my vision. I wish we at the school could help my student cope with his Ushers and get past the denial. Based on my experience with my classmate, denial does more harm to his future than good.

  15. Cy, encourage him to read my website through and through…. as well as checking out all the links on the right of my site. He also can join Usher Buddies International… He needs to meet more role models who have Usher’s like him… I wish I had a role model who was DB growing up but I never did. Now I aim to be one to inspire people to move on and be positive. Then they will live life to its fullest.

    Thank you for sharing.

  16. Jac says:

    You really showed us your strong brave & a great positive. Also, thanks for a great sharing with us. I also have a few friends with usher syndrome, I had been helped them for years. By the way, you look so great. Good luck with your trip to Africa!

  17. Shari says:

    Thanks for sharing, Christine/Coco.

    I can totally relate to how you feel about talking about how much you can see. I didn’t like to talk about it either. It is so hard to try to explain it.

    Denial is big problem. Sometimes it’s just a pride thing or just a “I am independent” thing. It took me a long time to accept that I don’t see as well as I used to.

    Take Care. :0
    Take care.

  18. Jennifer says:

    Little late here, but Christine, thank you for answering the question some of us are hesitant to ask. If we don’t know how well a person can or can’t see, those of us who care cannot take action to minimize obstacles/alert the db person to threats and opportunities in their environment…you’re vlog was clear, and I agree with the other posters: you’re a beautiful girl.
    Best,
    J. Keener

  19. Heidi says:

    Hi Coco
    I’m guest here on deafread but after viewing your video clip and I realize wow that was awesome. I could relate to some of that but not to Usher Sydrome but I have Epilespy.

    What inspires me that is you realize that you knowing that Usher Sydrome is affecting you in many ways in your life after you start get inloved with community for the Deaf-Blind and Usher Sydrome people. That also that I’m gratitude that you are very strong about what u have and stay postive in that.

    I have epilespy since I was 4. I’ve approach to the people with questions, my barriers, fears also attacks and world looks at me and I kinda relate that feeling then we’re just human beings after all. we should remeber that life could be more appreciate and enjoy life as we can.

    – Just Heidi

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s