From the article: What Is It Like to Be Deaf-Blind?
Are you deaf and losing your vision, or blind and losing your hearing? What is it about being deaf and blind that are you struggling to cope with the most? What advice would you give to other people who already have hearing or vision loss and are struggling to cope with losing the other sense?
Learn more about Deafblindness
Late Deafness Then Blindness
- I have a condition called Cogan's Syndrome Vasculitis. Its primary symptoms are deafness and blindness due to inflammation of the blood vessels feeding the ears and eyes. I've had it for 12 years. In 2002, after a 5 year health battle, I became profoundly deaf. I opted for a cochlear implant and works well on my right side. This year, 2011, I've had several eye conditions of concern, primarily loss of optic nerve vision in both eyes and corneal starvation in the left eye. It looks as though I'll be facing blindness at some time. How do I feel about it? I'm scared. I didn't mind the deafness because I could still take care of myself easily. I could drive, which means dr's appts, shopping, errands, etc. were all do-able. Since my left eye has had problems, I've not been able to drive and it really cramps my lifestyle. I am a very independent person and now I have to rely on disability transportation and my sister (bless her). My drs and I hope to curtail the loss.
- —Guest Stacey
Job Safety Issues
- I cope by having to feel my way around a room even when I work in a darkened store stockroom. I've asked my store manager to turn on lights. A few times my dad had to explain to store manager and he did not realize I was really was blind in left eye. I had to wait hour and half for them turn on lights for me to do my job accurately and one time I fell into the gurney bin because there was no light turned on to guide me. In a room then store manager explained to me that the lights go on automatically and are timed to turn on at 830 to 9 am. Why then did he ask me to show up at 7 am to 10 am knowing I can't see good out of left eye? Are they willing to risk lawsuits and so on to force them to comply with ADA and title 3 public accommodation. The stores fall under title 3 since it is a public entity, a public place where people go to shop and gather or meet friends. Any ideas what to do to help me function? I am also deaf and have cp and seizure disorder, and paralysis on left side of body as well.
- —Guest losing vision multiple disabilities
Had to Retire from Job
- I was born deaf and wore hearing aid all my life, my sister has the same thing. We both have usher syndrome. We both got it in about 15 yrs ago. It was very hard on me, I had to retired from my job, quit driving. I took training on using a cane and other things. I still have good days and bad. I am 58 now. I was wondering what I could say to people on this. Only thing is to accept it, take the training to help motivate, my main thing was take one day at a time. I live alone, it was very rough but I am doing it. Will never give up my independent. You can do it. Learn new things keep going. I hope this helped, as I am still learning and I wont give up. So good luck.
- —Guest VICKI BOWMAN
Take It As It Comes
- I've been Deaf all my life, and though started having symptoms of vision loss (night blindness, glare sensitivity, tripping over things) around puberty, I never saw an opthamologist until 39 (last year). I was told I have retinitis pigmentosa, with being deaf it is Usher Syndrome. Though I haven't driven regularly in many years, these days I drive a little moto scooter but can't drive at night any more. I SHOULD not drive at all, probably, but I can't give it up yet. In dark places (like clubs or outside at night) I have to use tactile sign language. I'm scared to death of going blind, just the psych of being afraid of the dark when you can't turn on the lights again, ever. I know I'm years away from that still, and will just take each change as it comes. It's either live with it or not live at all! And I know many happy, productive Deafblind people. Trying to focus on the positive of increasing my tactile experience of the world. Being ''in touch'' has a whole new meaning!
- —Pellegrina
Family Losing Hearing and Vision
- My mom is legally blind in her right eye, and going blind in her left. She now has 30% 20% hearing. I'm losing my hearing in my right ear. I lost 40% hearing. my brothers, are also having vision problems.
- —Guest debbie fowler
Power of Freedom
- I am mad as hell being deaf/blind, but I won't stop from what I am doing now...I trained a lot how to cope and my DVR counselor fail to help respond my needs. So, I am coping how to map myself out of the ordinary way of life. And focus myself how to play my disability thru power of freedom. Another word push to the limit and don't look back.
- —Guest Zest
