USAO Alum Shares Hearing Loss Journey in New Novel

Most people don’t expect to deal with hearing loss until their old age, but one USAO alum has years of experience and she is in her mid-thirties. Shanna Bartlett Groves, a 1996 graduate of USAO and a 1992 graduate of Prague High School, has dealt with hearing loss in online support groups, speaking engagements, relationships and now in a new novel.

Groves, a freelance writer, completed the novel Lip Reader based on her own experiences with hearing loss. “I wrote Lip Reader to tell a story of a family dealing with hearing loss. This is a story that not only tells about their experiences with being hard of hearing in a hearing world, but also some of the reactions that other people have had with their deafness.

“My own hearing journey inspired the two main characters in the story, 12-year-old Sapphie Traylor and her mother Rea. The extended family – the grandparents, uncles, aunt and cousins – were inspired by my father’s family, some of whom still live in the Fort Cobb/Anadarko area where I was born.”

Being a freelance writer, editor, a full-time mom and having an active community and church life can limit time for writing a novel. “Writing time is usually in the afternoons when the older two kids are at school and my one year-old son is napping.”

Although Lip Reader is Groves first novel, it is far from being her first writing effort. “My short stories have been featured in four editions of the popular book series A Cup of Comfort (Adams Media). My first book, All Roads Lead to Home, is a history of my mother’s family, who were born and raised in Oklahoma. Because it was specifically written for my family, I haven’t published it.”

She has written about her hearing loss journey in Hearing Loss Journal, The Kansas City Star, MOMSense and the book A Cup of Comfort For Nurses (Adams Media).

While a student at USAO, Groves wrote for the Chickasha Star, served as an intern at KWTV Channel 9 and as an intern at The Daily Oklahoman. On campus, she was the editor, assistant editor and a writer for the student newspaper, The Trend.

Lip Reader is available on the Lip Reader Blog – shannagroves.blogspot.com. The blog is by invitation only. To access the blog, contact Groves at sgrovesuss@msn.com.

In addition to the online blog, two book discussion groups are scheduled – one in Oklahoma. The first is scheduled Jan. 10 at 2 p.m. at Panera Bread, 10600 S. Pennsylvania Avenue in Oklahoma City. Another discussion group is scheduled Jan. 17 at 2 p.m. at Homer’s Coffee House in Overland Park, Kansas.

An excerpt from Lip Reader won first place in fiction at the 2008 Heart of America Christian Writers Network Conference in Kansas City.

Through her novel, online presence and through other communication means, Groves talks much about her hearing loss journey. She was diagnosed with progressive hearing loss at 27 after the birth of her first child.

“When I was diagnosed with progressive hearing loss, it was a busy time of life. I was a new mom and working full-time as a magazine editor. My boss was very understanding about the hearing loss, but I was concerned that I could lose my job because of it. At the time, I had no idea laws were in place to protect employees with disabilities. I was also dealing with some denial about the hearing loss. Instead of getting hearing aids, like the audiologist recommended, I took the attitude of ‘grin and bear it.’ Two years went by before I purchased hearing aids.

“It took me a long time before I would let anyone see my behind-the-ear hearing aids. My hair is shoulder length and easily covers them up. I wouldn’t wear my hair pulled back for fear that someone would notice my hearing aids. I was embarrassed by them. For a while, I had my own prejudice that hearing aids made me look weird or not very smart. Of course, that isn’t the truth, at least I don’t think!”

Groves says she gets a variety of reactions when sharing her hearing loss with others. “When I tell people I have lost some hearing, they may say, ‘oh, I’m sorry.’ Others will share stories of family members or friends who have hearing loss. I used to be offended when people reacted to the hearing loss by shouting or talking really slow. With time, I’ve learned to laugh it off.”

Groves gives four points of advice to people who communicate with her and others with hearing loss. “First, face me when you speak and don’t stand more than 10 feet away. Try not to cover your lips or chew gum while speaking so that I can lip-read. Third, speak clearly without shouting. Finally, be prepared to repeat what you just said if I have trouble understanding you.”

Groves has high frequency hearing loss and tinnitus. “My hearing loss has gotten progressively worse over time, and it is expected to continue. Both ears have sensorineural loss, which means some of the ears’ nerve endings have been destroyed. There is a history of hearing loss in my dad’s family, which could have made me susceptible to the loss. I noticed that my hearing began diminishing during my first pregnancy eight years ago, so hormonal changes then could have affected my hearing.

“I first learned about hearing loss through my extended family, who are from the Anadarko/Fort Cobb area. My grandfather, aunt, uncle and two cousins have profound hearing loss and most of them wore hearing aids when I was growing up. Still, I never anticipated that I would lose my hearing someday.

“Hearing loss and I have finally forged a friendship. In the beginning, I wanted nothing to do with hearing loss, but it wouldn’t leave me. For years, I felt embarrassed, angry and sad about it. After time, I got to know hearing loss better and discovered that it made me more compassionate toward people, particularly people with special needs. Hearing loss has helped me be a more giving, thoughtful person, for which I’m grateful.”

Although dealing with a disability, Groves says she doesn’t feel disabled. “Technically, my hearing loss is a disability. It hinders my ability to hear certain things, such as fire alarms, a ringing phone, or a baby crying in a different room. While I have a disability, I no longer feel disabled by it. With a good attitude and sense of humor, along with a lot of faith, hearing loss doesn’t have to bring me or anyone else down.”

Hearing loss is mostly associated with aging but the number of younger people with hearing loss is increasing. “Hearing loss is becoming more common among people ages 20-50 for a variety of reasons.

“First is increased exposure to loud noises. Repeated use of loud headphones and stereos, as well as music concerts, has contributed to hearing loss prevalence in young people. Other causes of hearing loss in young people can include chronic ear infections or ototoxic prescription drugs (check with a doctor for a list of these medications). Of course, a family history of genetic hearing loss can make young people more susceptible to it.

“One of the most common symptoms of hearing loss is tinnitus, also known as ‘ringing in the ears.’ If a person has a ringing sound in their ears that won’t go away, schedule an appointment with an audiologist for a hearing test. Annual hearing tests with a reputable audiologist are a good idea for people with a history of family genetic hearing loss or general concerns about their hearing.” A example of what tinnitus sounds like is available on the web at www.neuromonics.com/patient/treatment/index.aspx?id=50. Groves recommends that computer users turn their volume down when starting the simulation.

Groves says that her faith has been an important part of this journey. In many of her correspondences, she quotes Jeremiah 29:11-13. “In 2002, I stopped working full-time to raise my son at home and to start a freelance writing business. For a couple of years, I was able to work well out of the home. I conducted phone interviews with clients while my son napped and worked on articles in the afternoons or evenings.

“Eventually, my hearing loss made phone interviews so difficult that I had to stop making them. It was a huge test of my faith not to give up the writing business because of my hearing. I wondered if I would ever be able to work successfully again. Then I looked at Jeremiah 29:11-13 with fresh eyes. God says that he knows the plans he has for us, plans to prosper us and not to harm us, plans to give us hope and a future. Then it says that I need to seek God with all of my heart. That is my goal each day, to seek him with all my heart and not let hearing loss bring me down.

“Hearing loss has brought me to my knees more than once. It has caused me to pray and lean on God to work through my weaknesses and strengthen me when I feel like giving up. I owe a lot to God for teaching me compassion, endurance and hope through it all.”

Groves says that with a lot of support, she doesn’t feel alone in this journey. “My next-door neighbor is a 30-year-old woman who was born with profound hearing loss. She has used hearing aids since she was a child. My friend has her master’s degree and works in a specialized engineering job. She is happy, upbeat, and has taught me that hearing loss doesn’t have to bring her down.

“My older two children, ages eight and four, have adapted to my hearing loss very well because they have grown up with it. They have learned to speak clearly or repeat things so I can understand them. My husband has the patience of a rock when it comes to repeating questions to me!”

Groves also receives support from on-line groups. “I am a member of the Hearing Loss Association of America (www.hearingloss.org), Hearing Loss Nation (a social network for the young and hard of hearing - http://hearinglossnation.ning.com) and the Beyond Hearing discussion group (http://groups.yahoo.com/group/Beyond-Hearing). I have met hard of hearing people through these groups and have learned about hearing assistive technology and coping strategies from them.”

In addition to receiving support, she also gives much support to those facing hearing loss. “You are not alone! Thousands of young people have hearing loss and they lead happy, productive lives. Connect with a qualified audiologist in your area who can provide hearing tests and information about hearing aids or other assistive technology. Tell people you have hearing loss so that they know to use good communication habits with you (facing you while they speak, talking clearly).

“It is always a good idea to practice good listening habits, whether a person has lost their hearing or not. Turn down the volume on radios, and wear earplugs at concerts or while operating loud machinery. The rule of thumb is, if a person has difficulty hearing a conversation while the noise is taking place, then the noise is too loud or could potentially cause hearing damage over time.”

Groves and her husband Scott live in the Kansas City area with their three children. Groves says she plans to continue educating people about hearing loss. “In addition to taking care of my three kids, I hope to continue educating people about hearing loss; to get their hearing tested annually and to practice good hearing habits. I would like to see Lip Reader published and available for the mass market in the near future. Currently, Lip Reader is being edited professionally before submission.”