A couple of weeks ago, I met for lunch and swimming with my friend, Wendy, and her children. As the two of us watched our kids splash and jump around in a neighborhood pool, Wendy and I chatted about her hearing loss and blindness. I had so many questions to ask her that I couldn’t fit them all into our conversation—and the kids obviously required three-fourths of our attention. So I followed up with Wendy in an email interview.
What is your earliest memory of vision loss and hearing loss?
It might have been in high school now that I recollect issues. I remember almost getting hit by the garage door while it was going down.
Wow. That is scary.
When we recently spoke, you described your vision loss as seeing things with Vaseline smeared over your sunglasses. You also mentioned having no peripheral vision. What are the causes of your vision and hearing loss?The retinitis pigmentosa was diagnosed as spontaneous. The hearing loss, which has nothing to do with the vision loss, is heredity.
I noticed some computer gadgets in your home during our recent visit. Explain how you use technology to help you see and hear the world.
Eventually using the Alphapointe program introduced me to the technology use the techniques to adapt to the environment and at home. Eventually I learned to use Zoom Text which enables me to use my computer efficiently.
Digital hearing aids are used for my hearing loss.
When I first met you, we were at a Hearing Loss Association of America picnic and you gave me a flyer about hearing assistive technology, called looping. How did you get started on your looping campaign?
I was introduced to the product by my hearing aid specialist. He saw a real future with this product and felt I could take it to the next level.
That’s cool, Wendy. Readers—Click here for more info about what looping is.
No problem. Now I have to ask: As the mom of two amazing children, what is a typical day like for you at home?
Besides doing everything normal as all mothers do for their families, I exercise on a regular basis and work from home. I am involved in the Foundation Fighting Blindness VisionWalk. Being organized helps in all aspects, especially since I am not able to drive.
You have such a positive outlook on life. Any other information about yourself that you would like to share?
I have a strong passion for people with vision and hearing impairment. With my knowledge on hearing loop technology, I hope to share this product where needed.
There are approximately roughly 45,000 to 50,000 individuals in the U.S who are deaf-blind. – National Dissemination Center for Children with Disabilities.
Read More About the DeafBlind Experience
National Dissemination Center for Children with Disabilities
Ushers Syndrome, Hearing/Vision Loss, and Humor – LipreadingMom.com
The Water Bill of the DeafBlind – Life in Color with Closed Captions
Readers—Do you have experience with deafness and blindness? Share your story with me by leaving a comment.
I’m sure you’ve heard of the Helen Keller National Center but I’m not sure you’ve heard or experienced the one in Sands Point, Long Island. I use to work there. They accept anyone from 21 plus who is legally blind and hearing impaired. They have the newest technology you can imagine and your State Rehab program pays for your rehab there. It’s a residential school to help with all your needs. However, you seem to have it all under control. However, I’m providing a link because they have representatives all over the U.S. who will come out and visit and give you info.
Best of Luck
Thank for the great info, Pearl.
This is my greatest fear. I have had a gradual hearing loss since my 20s. Now, nearing 50, it is worsening on a regular basis. I have had mild vision issues since early childhood. No worry about that until the last six years as my vision began worsening. Since I am a visual learner, this terrifies me. I can handle not being able to hear. After all, even though not very proficient, I can sign. I can also read captioning, etc. However, as my vision worsens, I am not sure exactly what I will do. I am to the point where my tri-focals need to be stronger. I have an appointment with specialists coming up next month.
I appreciate this post as it has been weighing on my mind. My youngest is about to the age where he will move out on his own. Then it will just be me. I just finished my masters degree in counseling. Not sure how I will deal with things.
@countrymom7 – God bless you in this journey.
What a change this could make.
I’ve been Deaf and legally Blind since birth so “been there done that” 🙂
If you have any questions Wendy, just send me a message!
Tracy – I will share your comment with Wendy Weiner. Thank you for it!
Reblogged this on The Daily Advocate By Painspeaks.
@painspeaks – Thanks so much for the reblog!
I feel for you. I’m deaf and alarmingly dependent on my eyes. I can only image this scary situation, but you seem to be making the most of it–by helping others. Keep up the good work.
Tara – Thank you for reading…and for your true sense of empathy.
You are a very strong and admirable person. I have been worried about losing my sight. I have intracranial hypertension (high CSF pressure) and this can cause blindness. I started out slowly losing my hearing in one ear – due to Meniere’s disease – then suddenly I lost it in both ears. I have one cochlear implant, but I still need to see people to understand what they are saying. I’m ok with the hearing loss, much better than I thought I would be. But losing my sight too? That really frightens me. as I said before, you are a strong person!
About Looping. There are several places in my area that are looped. We are thinking about looping our living room. It is a wonderful piece of technology, having the sounds piped right into my CI is wonderful!
Thank you for sharing your story with us.
Wendy – Thank you for commenting. May I put you in touch with Wendy Weiner, who is featured in this story? I’m sure she would like to learn more of your story.
of course you can! My blog is http://picnicwithants.wordpress.com.
my email is under the About Me section.
I want to thank you for all you do…and thank you for sharing Wendy’s story.
My daughter is deafblind as well. She has retinitis pigmentosa also! I have WAY too many thoughts and feelings to condense into a single post here. I have overwhelming sadness when I think of the losses for her. Music. Cartoons. Faces. I have to stop, or I’ll cry. And I can’t do anything to prevent this from advancing. All I can do is try to help her learn how to deal with it. Along with the sadness is anger. She doesn’t deserve this. She’s an innocent child. There aren’t any peers that know what she’s going through. How can I explain what is happening? What am I going to do when she can’t see me anymore? :’-(
Speaking as a person who’s been DB from birth – first thing you got to do is stop seeing it from your perspective! You’re sad because of your experiences. Start thinking from a blank slate – how much fun the sensation of a soft kitten in her arms, feeling a chick hatch out of her egg under her fingertips, gooey cold paint as she spreads it over paper any way she wants. Just expose her to everything through touch & whatever limited other senses. Teach her Braille & sign language & she’ll have adventures through books. The library was my favorite place growing up.
If you need anything just send me a email.
rustycyot (at) hotmail.com
Rusty – Thank you for sharing your positive experiences!
Great post, Rusty_Coyote! We all need to celebrate what we’ve got.
Most people with RP and hearing loss have something called Usher’s Syndrome. I don’t know if that is what you are experiencing, or something else. Fortunately, many folks with Usher’s Syndrome are able to benefit from CI’s. I hope this is the case for you as well.
I’ve met many folks who are deaf blind due to my training to work with the deafblind as a paid service provider. People can be very functional and do many things. I know one deafblind man who writes legislation and he’s exceptionally involved in the world.
Wishing you the best,
Marsha – Thanks for the info. I believe Wendy shared with me that her hearing/vision loss isn’t Usher’s Syndrome.
Thank you for this inspiring blog. I have mild to moderate hearing loss and have worn hearing aids for 10 years – but hearing is now deteriorating rapidly. Also very poor eyesight from high myopia – so I am interested in deafblind issues, and expect to be deafblind myself in a few years
I just saw your blog for the first time. I use cochlear implants and am almost totally blind. I have about a 1 degree visual field in both eyes but I am trying to remain focused on what I can still do. I am finishing an afghan for my wonderful husband. I enjoy crocheting and am getting ready to learn how to knit. I am 65 years old, a mother, and grandmother. I just recently connected in with different Facebook groups focused on Usher’s (which I have), vision and low vision group, and a cochlear implant group. Love making new friends!
Welcome to my blog, Ann! Thank you for the introduction. I hope you find some useful information from my blog posts. Blessings to you.