Where Did the Words Go?

Today, I’m sharing another incredible story of hope and resilience. This was written by a psychiatric nurse practitioner colleague of mine. She wrote it for a women’s health essay competition at her local DAR chapter, and she graciously agreed to let me share it. In addition to her determination and adaptability, God’s presence is evident throughout the story of her challenging journey, especially on the cruise she nearly cancelled. #DAR

By Nanci Rinehart, RN, MSN

I grew up on college campuses where words were of great importance to my parents. Dad graduated with the WW II GI Bill and taught speech and drama. I watched him direct his college students as they turned words into actions and actions into plays. My favorites were musicals.

When I started first grade my father rejoined the military and worked as a journalist for the service newspapers. Dad linked words together for information and entertainment. In the evenings my parents competitively played Scrabble while I watched. They encouraged me to look in the dictionary for words I didn’t understand.

Dad was transferred to England when I was eight. He taught on the weekends at the University of Maryland extension campus in London where Mom took classes. Every move meant a new college with different degree requirements for her. When we planned a vacation to a country across the Channel we studied that country’s language like we were in school. My assignment involved asking directions and ordering my own food. Vacations were special because I helped.

We moved back to the States on my eleventh birthday. When school started I noticed a problem understanding people. Tests revealed hearing loss in my left ear. I refused to wear a hearing aid because I looked weird. I stood on people’s left side when they talked so I could understand them. In school I sat in the front row.

That same year I met Micki, a girl who lived across the street. She talked with her hands not her voice. Mom said that was because she was deaf. As friends we created a language by pointing and making faces while we played games and rode our bikes. Her mother gave me a card that showed the signed alphabet. I memorized the letter signs to spell words and Micki taught me signs for the words.

My grandparents came to visit; Grandpa never talked because he was deaf. I asked Mom why her father didn’t sign like Micki. She said he lost his hearing when he was sixteen and never had the chance to learn sign language. Grandpa lived in a lonely, silent world without talking. I thought life without communication with others would be scary and sad and hoped my hearing wouldn’t make me like Grandpa.

Since my church had signed services for deaf people in the community, I decided to sing with the choir during the hearing service and then attend the deaf church where I learned more signed words while my siblings went to Sunday school. Every night I signed the Lord’s Prayer, one letter at a time, until I fell asleep. I knew the word signs but wanted to practice spelling.

Two years later we moved to Japan. I babysat my younger siblings so Mom could finally graduate. I was in eighth grade and without a person to sign with I forgot word signs but not the alphabet. I wanted to learn Japanese and a neighbor girl wanted to speak English so we decided to help each other. At her home we fed mulberry leaves to the silk worms her family raised and giggled at our mistakes while she practiced English and I stumbled through basic Japanese words. I learned Japanese for fun but studied French in school and both French and German the next year and struggled with pronunciation. My love for music continued and since I could still hear with my good ear I became the singer in a rock and roll band for dances and theater performances at various American military bases around Tokyo.

We moved back to the States at the beginning of my junior year. All fall I practiced with my choir class for a holiday performance of the “Messiah.” Christmas was truly wonderful because my wise mother gave me a dictionary and a thesaurus. Time sped by that vacation as I immersed myself in words, their meanings and synonyms. I wrote poetry and stories with what I had learned.

While living in New York we toured the UN building. I watched, fascinated, as the interpreters translated one language into another in seconds, and talked into a microphone that connected with the politician’s headset so he understood speakers in the meeting. The interpreters managed to translate so well because they had excellent hearing. I realized then that my hearing loss meant limitations in my future choice of career.

In the spring of my senior year Dad received orders to move to England again. I stayed behind to start college. According to demographics a family’s oldest daughter and caretaker often became a nurse; as the oldest child in my family, I majored in nursing. The way I performed each skill required some creativity; to take a blood pressure I leaned my head on my right shoulder which kept the stethoscope earpiece in place instead of listening through both sides. I learned medical words easily as much of it was in Latin, close to the French I had taken in high school.

After graduation I worked in ICU-CCU where I cared for the sickest patients in the university hospital but, in time, found detecting heart murmurs and lung sounds increasingly difficult. My language skills helped when I explained care to German, French or deaf patients who spoke no English. For ten years I worked in that tense and far too often hopeless environment and decided I needed to work elsewhere.

I transferred to the usually joyful area of labor and delivery. L & D used ultrasound machines to count fetal heartbeats rather than human ears and monitors recorded labor contractions; it was a perfect workplace for me. During the twelve years I worked there I delivered many babies before the doctors arrived in time.

When there weren’t patients in labor, I was “floated” to work in the mental health unit, which I thoroughly enjoyed. I took classes at the University for an advanced degree and became a psychiatric nurse practitioner. I taught nursing during the week and worked weekends in a locked adolescent psychiatric unit. I asked people to face me when they spoke so I could read their lips. Not yet ready to admit that my diminished hearing influenced my singing ability, I toured Europe with a large chorale group.

A few years later I woke up, felt dizzy and heard a loud buzzing noise. Movement made everything twirl. My brain resembled an ocean sloshing from side to side when I turned over in bed. My doctor diagnosed it as Meniere’s. Medication stopped the zinging sounds of tinnitus but words remained blurred. Tests showed diminished hearing in both ears. The loss might stabilize and remain the same or it might progress toward deafness. I got hearing aids with tinnitus maskers to block the buzzing tinnitus sounds and hear better.

My husband and I had reservations for a cruise the next month. Reluctantly I went because it was too late to cancel, thankful there was no more dizziness but still adjusting to the use of hearing aids. The first day aboard I noticed a woman signing to her friend. I greeted them and slowly spelled my name. Luckily Ellen read lips and didn’t need me to sign. I invited them to have dinner with us and we shared every evening meal after that. Meeting Ellen was no coincidence, she was exactly who I needed to meet at that time. I told her about my hearing and she urged me to relearn sign language. She wrote down the names and phone numbers of two of her friends who lived in our city.

A few weeks later I panicked, afraid I’d lose all sound, all words. What if I couldn’t talk to my patients or family and hear music or sing? I emailed Ellen. She reminded me to call her deaf friends. I doubted that it would help but dialed the first number. An operator answered and instructed me to speak and then say “Go Ahead” when I finished talking. She typed my words, the woman answered and the operator read her response. After chatting a while we made plans to meet for lunch.

I called the second number. The woman, Sue, told me her husband taught sign language in the local college. We met weekly for signing lessons. Fred and Sue became supportive, loving friends; almost like family. Like many minority groups that are more comfortable with others like themselves, the deaf are not usually at ease with many hearing people, so it was an honor when they accepted me as a late deafened person with what one friend called a “deaf heart.” Gradually my world was half spoken and half signed.

As hearing loss increased I stopped teaching, doing therapy with patients and singing. My grief overwhelmed me. The losses destroyed my self-identity as a nurse and singer. I didn’t want to do anything but wallow in self-pity and believed I had no purpose in life. Slowly my life began to improve. I decided that hearing loss could be a challenge rather than a failure.

Now it is a wonderful and positive new world for me. Since my attitude changed I write children’s books and, at the request of the chorale director, sign the words of the “Messiah” while they sing it for their annual Christmas performance. Sometimes I hear sounds but understand only 25% of spoken words. I am blessed because most late deafened adults cannot sign and end up isolated like Grandpa. Words appear like others sometimes; if you say “olive juice” I might lip read “I love you.” Understanding my hearing friends takes work, laughing at my mistakes and “carrying on.” My life is busy and full, chairing a citywide support group for women with heart disease and volunteering for many DAR projects.

Unable to find other signers in my community, I find ways to keep signing; I tutor college students in sign weekly, attend winter luncheons with deaf “snowbirds,” teach a class to grandparents who want to sign with their grandchildren and call deaf friends on the videophone. My hearing dog, Heidi, accompanies me everywhere and tells me when the oven timer sounds, if anyone comes to the door and if my blood sugar is low, among her many other skills. Because large and noisy groups cause ear pain and confusion I belong to a few small groups that play board games and cards. Friends walk three miles a day with me. I participate in local charity walks such as those of the Heart Association and Parkinson’s Foundation. I marvel at the technology like texting that helps me communicate.

Words have changed dramatically since my childhood but they aren’t lost. Words are still here.