What does severe hearing loss feel like?

If you attended CHC’s 21st Annual Feast, or follow us on Facebook or Twitter, you know that the fundraising event was a great time and a great success. All funds raised are benefiting clients of the Center for Hearing and Communication. The Feast is our biggest fundraiser of the year. It’s critical to our ability to keep giving members of our community the hearing loss help and support they desperately need, even when they can’t afford it.

On living with severe hearing loss

About live captioning

Each of CHC’s formally produced events is made as accessible as possible for deaf and hard of hearing guests. We provide ASL interpretation, hearing induction loops, and FM transmitter headsets. Following are words from two of the event’s speakers, excerpted from a real-time live captioning transcript. Known as Communication Access Realtime Translation (CART), the service works like live subtitles.

ASL interpreter (left) and Mr. Fred Nives, with CART transcription visible in the background

And we wouldn’t have wanted anyone to miss a word of the speeches we heard at the end of the evening. Admittedly, the transcript on a webpage can’t compare to the impact of speakers themselves. But we were so very moved that we wanted to share them with you as best we could.

“This must not happen.”

When Mr. Fred Nives—and all of his 93 well-lived years—took the stage, it felt like he had long wanted to give the world this message.

Mr. Nives has been a CHC board member since 2010, and a strong, endearing member of the CHC family for far longer. We asked him to tell us what living with severe hearing loss means for him. He obliged us.

“Many people only have a mild or moderate hearing loss. And with proper treatment and hearing aids they can live a normal life from here. How about the rest of us, like me, who have a severe hearing [loss]? That’s more difficult.

“What I do, what I do? I try my best. I make sure I know the subject of the conversation. I look at the people and the speakers, I look at their facial expressions. I do some lipreading. And all in all I hope for the best.

“A lot of people at my age hear the sounds. They do hear them. Unfortunately they don’t understand the meanings of the sounds. As a consequence, a lot of people become passive in life. They withdraw. They isolate themselves. They don’t participate… in conversation. This must not happen.

“Dr. Frank Lin at Johns Hopkins has done extensive studies on the connection between untreated severe hearing loss and dementia. Unfortunately he found that untreated hearing loss greatly contributes to a state of dementia for senior citizens. This must not happen.

“I don’t think it has happened to me. You are my witness.”

Mr. Nives is the best kind of tongue-in-cheek joker. His listeners cheered to let him know they agreed here, before letting him go on:

“… people over 65, that is 80% of people over 65, that is your mothers, your fathers, your older friends, your older relatives, [have] some sort of hearing loss. Here is an important message to you and to them. Only 50% percent of them do something about it. The rest have kind of ignored [it]. This must not happen.

“There’s a pretty lady here who is my wife for the past 56 years. She has lived with this hearing situation for the past 25 years or so, and has shown great patience. How did you do that, Donna? Tell them please.”

Donna’s side of the story: “Please try.”

The effects of severe hearing loss on a partner are profound but sometimes overlooked. Mrs. Nives’ honest, disquieting account of the experience was at once a compelling story and a stern admonition. She began:

“And you can see why I have such patience with this wonderful man. You have described your trials and your tribulations… And you have coped well. I think that’s very obvious.

Mrs. Donna Nives joins her husband on the stage at the 2014 CHC Feast.

“It wasn’t always that way. And so now I would like to share a spouse’s reaction to realizing what Fred was experiencing, and how I agonized about how I could help him.

“Comprehending the full extent [of your loved one’s] severe hearing loss… means that you watch a brilliant mind—brilliant—going to waste… You see a person who was always the life of the party because of his quick wit and funny stories become almost mute…

“You see him struggling to capture the essence of the conversation, and watch the light go out in his eyes, and a vacuous expression on his face, an insipid smile. And you knew he was giving up.

“… Gradually we gave up dinner parties, theater, lectures, movies, and it was not something we enjoyed.

“Your partner, because he cannot hear you, becomes exasperated and answers you in a loud and booming voice. And you are not only frustrated, but you’re very embarrassed. And the worst of it is that your heart is really breaking. You don’t know what to do. It really is breaking.

“The folks in this room who have experienced and watched their loved ones suffering are nodding their heads in agreement. They know the drill…

“So I am directing this to those of you who think that because the person is wearing a hearing aid he can hear you. If you really look, and pay attention, you will be aware that they cannot hear you.

“Please remember this message. You might find your parents, your spouse, your children, and older friends in this predicament. Please try. Please try to recognize their distress. Please do not walk very impatiently away. I’ve seen that happen. And if you look at the expression on the person’s face who has just been neglected, you’d never do it again.

“Those who are fortunate enough to know about the wonderful work of CHC can be assured the experts there are willing, able, and want to help you. And they want to help you and your loved ones to live as normal a life as possible. I am happy and grateful to say they have done wonders for us.

“And as you can see, Freddy is still the life of the party. He’s the life of my party.“

About Donna & Fred Nives

Mrs. Donna and Mr. Fred Nives were Leaders on the 2014 Feast Benefit Committee. They’ve been married since 1958. Donna co-founded and ran a 30+ year old, nonprofit animal rescue organization called Adopt-A-Dog. Fred’s career in financial services became especially distinct when he chose to address a specific need. He saw a detrimental lack of financial services developed specifically for military service members, and began lending exclusively to them.

Mr. Fred Nives in the crowd at the 2014 CHC Feast

Related reading: “In It Together: The Impact of Hearing Loss on Personal Relationships” from UK’s Action on Hearing Loss

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