Beyond the comfort zone: Titanium technology and glaucoma effects

The registered nurse was speaking to me about my mother’s recent ICU discharge when overhead speakers broadcast a doctor’s page. He cupped one hand over the back of each ear. I watched, sans comment. I am witnessing many medical professionals with hearing loss. Yet these moments are far more frequent than years ago — especially during the past two years as I viewed my father’s care prior to his death.

Perhaps it is my antenna as I view Mom’s challenges to “avoid death’s door” (a term given to Mom) wherein I see many now working with hearing loss. He said softly, “Don’t tell anyone. I have hearing loss.”

I nodded, “I see that you have coping skills to assist you.”

“You noticed?”

“Yes, sir. Due to my work.” Mom tells everyone, every shift, “My daughter is a court reporter, a teacher, and an author.” I simply bow my head. On many occasions I have been so happy Mom is alive that I avoid the daughter sigh.

I was prepared to not pursue this topic. Yet I find 99 percent of people who have hearing loss do want to detail their world with me. I listen, humbled, learning from each.

He said, “Most people don’t notice. My wife’s worse! She’s the one I worry about. I’ll tell you tomorrow, okay?” I nodded. We returned to our task — required gowning with gloves and mask in the hall before entering.

The next day the nurse met me. “I’ve been waiting for you.” He asked how I was familiar with hearing loss. I shared “court reporter, CART provider, captioner, consultant.” This nurse said, “My wife and children have serious issues. I just have hearing loss. But I know what I want before I lose my hearing.

“My wife has glaucoma. When she was a teen she took glaucoma medicine to decrease her eye pressure. The medicine also decreases inner ear pressure and damages nerves. Her hearing loss now is from medicine long ago. What’s worse than that?

“Each generation then has hearing loss from the parent’s medicine. Our children have decreased hearing and so will their children. One son is 12. He has huge decreased hearing. I worry about our children.”

He paused before continuing. “Since their hearing loss is more severe, their treatments come first. I’ve studied genetics about this. The fear of losing eyesight and hearing is devastating to my wife and to our children. That’s why we’re not going to have any more children. And my work

…” his voice trailed off.

He beamed, “But I know exactly what I want. It’s state-of-the-art.”

My eyes were as big as saucers as I listened to this man talk about the glaucoma medicine and generational effects. He summed it up, “Tomorrow I’ll tell you what I want. I probably won’t get it. Yet I have to have hope. Right?”

The next day, this nurse sprang from his chair when I came to see my mom. “I’ve been waiting for you. I told my wife about you and court reporters. We know all about your work. We thank you and your profession for helping us. Once I tell you what I really want, could you tell me how to help my 12-year-old?” I nodded.

I whipped out my iPad, asked permission to write notes. He said, “Sure! Let’s go look at the latest and greatest. It’s not well known, but it could be once the price comes down. And with glaucoma patients and their children’s children — and their children — they’re all going to need your help.”

We hunkered together and looked up “tympanoplasty.” The prostheses resembles a small earring. Hearing must be present. He emphasized, “This is different than cochlear implants. It’s titanium. Implants require relearning sounds and have differing results. This titanium tympanoplasty device is shaped to fit into each ear. It originated in Germany.”

The nurse shared that his wife and children are not prostheses candidates due to their “glaucoma medicine–induced hearing loss” (the kids never had glaucoma, nor do they have the gene).

He shared, “Medical costs are $30,000; insurance doesn’t cover it — yet. But I could hear again with this. I’ve done my homework. Now I just have to find a doctor who will do the surgery and not want thirty grand,” he said tenderly.

Later that day, he found me in the hall way — staring at the floor — wearing the isolation gown – holding the required gloves, sans mask. Now he held a notepad; he asked how he could help his family. “One son already has problems. He’s been bullied. I taught him karate for discipline and confidence. His speech is now thick-tongued as pressure in his ears create hearing loss from his mother’s glaucoma medicine before he was born.”

Since English is each son’s first language, I shared about the Alexander Graham Bell Association. I shared AGB techniques. Children work with balloons voicing sounds. Balloons bounce and have specific reactions to vocal sounds and exhalations of breath. Older children (and adults) often work with lit candles. If the flame is extinguished, the exhalation was not appropriate for that sound. “Fascinating,” he said.

Now he took notes saying, “My wife insisted I ask you. Insisted!” I detailed the Hearing Loss Association and other groups. I shared that each association has chapters; chapters are wonderful resources for children and adults.

We shared information each time I visited Mom. The nurse expressed his gratitude for being able to share his dreams, his hopes with me, and said each time, “I have to help my wife and children before I help myself. It’s the right thing to do. Yet I know my time is limited here on the floor.”

Looking left and right, he said, “I have problems with phones when there are overhead announcements. External noises are hard to work around. Yet I know if I get that titanium device before I have another hearing drop, I’ll be able to hear. I do not have the absolute fear of going blind and also losing my hearing. That is the fear, you know.”

I softly replied, “Yes, I know the deep fear for many deaf and hard-of-hearing individuals is to lose vision.”

This nurse truly enjoyed helping me learn about glaucoma patients who will then pass their decreased hearing down to their children — and then to their children. He exacted a promise that I share. (Mom also told him I would write an article …)

He shook my hand, “Great! Now if I can get that electronic stethoscope — that’s what I call it — I can help others. I’ll do my darndest to help my family, myself, and to help others. Good deal, right?”

“And you promise to write about this? (I nodded.) Maybe I’ll get my titanium surgery when others know how important this is. And my wife and children need help, too. You promise?”

“Yes, dear,” I softly replied.

Then he quoted, verbatim, a lengthy Monty Python skit, complete with accents. The nurse bowed, “We’ve walked barbed wire fences together you and me.”

He sprinted down the hall. Again, I was tired, cold, and hungry. Yet I was charmed by this man’s energy, his hopes, and his goals. Mom’s overhead light went off (in isolation — not many rush to her room). And I headed back in to help Mom.

Suddenly, the gentleman called my name. He put his hand over his heart and paused. Watching, I placed my hand over my heart.

Slowly, we nodded once in unison. And now I fulfill my promise sharing with each of you — together.

About Monette Benoit

JCR Contributing Editor, Monette Benoit, B.B.A., CRI, CPE, may be reached at www.CRRbooks. com and www.ARTCS.com.