Hearing Loss: Come introduce yourself and connect with others

I got real exercise 3 times a week for the entire time I had the worst problems, played basketball and volleyball competitively for 2 1/2 to 3 hrs 3 times a week. When I limited the sodium I finally got relief, if there were times I forgot it came right back and nailed me.
Jon Habermann

I was diagnosed with Sudden Profound Hearing Loss in 2018 in my right ear - 95% loss. Two days ago I lost all hearing in my left ear. It's a little scary to say the least. Having gone through this two years ago, I went directly to an ENT for treatment, as opposed to my previous approach of the walk-in clinic and wasting time with the standard incorrect diagnosis and treatments. I'm receiving steroid treatment and scheduled for hyperbaric oxygen therapy, so I'm optimistic in at least partial recovery.

In the meantime, I have a million questions and concerns as to how to navigate this hearing world without hearing. I have been pouring through the internet hoping to find a how-to guide or something that outlines what I should do now, resources, technology, tips for getting around in public... There is just way too much information online, and i'm finding it difficult to weed through it all. Do any of you know of a getting started guide to being deaf?

Welcome to the forum. Deafness is a lot different than living as a hearing person who is hard of hearing. It isn't an easy transition.

What state do you live in. Most states have an office called Office for Deaf and Hard of Hearing. I have found that the Minnesota office is better staffed and more helpful than the Wisconsin office. Local public health agencies are not prepared to deal with deafness in my limited experience. I've found the most helpful people are deaf.

I am hearing, but with a profound hearing loss and I decided to learn ASL (American Sign Language) for 2 reasons. First to improve my ability to communicate. Second to challenge my 77-year old brain into activity. I was somewhat successful on both objectives. ASL classes gave me the opportunity to interact with deaf people and I learned a lot from them. They are the most helpful.

Hearing people always seem to assume that others people (even deaf people) can hear. They sometimes talk louder even if it doesn't help. They don't realize that we are reading lips and their exaggerations aren't helpful. I have found that if I want a hearing person to communicate via a speech to text app or Sorenson Buzz Cards or ASL then I'm better off if I don't speak either. The minute I speak they assume they can answer me and expect me to understand.

I'm interest in how you do. Keep up your posts here.

Jim

Hello,

Welcome to this discussion group. It's very difficult to go from the normal hearing world to being clinically deaf. Most of us who have adult onset hearing loss (AOHL) want to remain in the hearing mainstream, and will do whatever it takes to do that. While my AOHL has been progressive over many years, I did grow up with normal hearing and developed language skills accordingly. We are very different from those who were born deaf or who became deaf prior to the full acquisition of language. Language includes speaking, reading and writing. If the steroid treatments do not work for you, I encourage you to consider a cochlear implant. You would have to go to a cochlear implant center for evaluation. Chances are, there is such a place within a reasonable distance of where you live. It may be your best chance to remain in the hearing mainstream. American Sign Language (ASL) is a wonderful tool, but the reality is; few people use it. It's like any other foreign language. You have to learn it and find others who use it to share it with. Most of us have hearing families, spouses, friends, co-workers, etc. Expecting them all to learn ASL because you need it is not reality. Yes, it may help you in some situations, and yes, it's a beautiful language. But it is not universal, so it will only help you of others you associate with also learn it. Technology has evolved over the last few decades to a point where profound hearing loss can be helped in most cases. Life will never be the same, but it will be good. If there is an HLAA Chapter in your area, find time to attend a meeting. Many of the people who participate in HLAA share your experience. http://www.hearingloss.org I hope this is helpful. While my hearing loss was gradual over time, it ruled my life until I found ways to help myself. The cochlear implant was the frosting on the cake!

@lindleys: One of the greatest challenges for those of us who have become functionally deaf suddenly is that all the places you can go to get help require that you CALL them to make an appt. Yes, e-mail isn't secure, but, dammit, it is one way that we can communicate knowing that we have the details we need. Not long ago, I made an appt. at the local vet for routine shots for our cat. I arrived a few minutes early on Monday...only to learn that the appt. had been made for Sunday. Not only was I embarrassed, but I had to pay a $25 fee as a "drop in." AARGH!!! I live two hours from Oregon's only metro area, and I've found that the only sure way to set appts. is either to drive to the clinic and do it in person or write a letter. So sad that not even communicating with hearing centers can be via e-mail.

After thinking about your post overnight I have a more organized comment.
1. Have your hearing loss evaluated and treated if possible.
2. Julie O is right about cochlear implants. They don't restore normal hearing but they. would allow you to remain in the hearing world
3. ASL is truly a different language with a different syntax. There are variations of ASL. Plus different countries have different signs. Very few people know ASL
4. For now you may have to use note pads, computer chats, voice to text apps, etc to communicate. The associated challenge is teaching other people to use them to help you understand.

Thanks @arrowshooter! I appreciate the tip on learning ASL. I'll check to see if there is an Office for the Deaf and Hard of Hearing. I'm in Vanvcouver Washington, accross the river from Portland. Your comment, "I have found that if I want a hearing person to communicate via a speech to text app or Sorenson Buzz Cards or ASL then I'm better off if I don't speak either" is exactly the kind of info I'm looking for.

I work in sales, selling manufacturing equipment, and I'd like to quickly find a way to continue to do so. But 80% of my job is on the phone or in person communication. What it's the likelihood that I'll be able to pull this off?

Scott

I am getting treated. 24 hrs after I Iost hearing in my left (formerly good) ear, I saw my ENT who gave me a shot of steroids through my eardrum and put me on a 14 day course of prednisone. Im also going to be getting hyperbaric O2 treatments. My ENT is referring me to a specialist to see about implants if the treatment doesn't help. Is there anything else i should be doing?

Yesterday I figured out that COSTCO could convert my heating aid from my left to my right, and reprogram it for my profound loss in that ear. I can now somewhat understand people if I'm looking at their mouth while their talking. Facemasks definitely dont help.

What is the best voice to text app?

@joyces: I live near Portland! I'd love to learn about any local resources you can share. I have my sister staying with me for now, making appointments for me currently. Although even my insurance company needs me to verbally confirm she's authorized to speak to them each time. That's a little frustrating and concerning for when she goes back home. I setup INNO Caption on my cell phone. Hopefully that helps.

Thank you @julieo4! I'll look for a HLAA chapter near me.