Coping with Sudden, Profound Hearing Loss Motivates Wilton Woman to Help Others
Confronting her own profound hearing loss, a Wilton business owner celebrates her success by giving back and helping others who are now facing those same challenges she overcame. Read on to learn how you can help her make a difference in the lives of children with hearing loss.
Eight years ago, Wilton resident and The Pilates Advantage owner Mary Beth Young assumed her new phone was broken because she could hear nothing when she held it to her left ear and only a few faint sounds with her right one. But it wasn’t until she asked the instructors working alongside her that day if they could hear any sounds from her phone that she realized the phone wasn’t the issue–the problem was her own ears.
“I went to a doctor to have my ears tested and described some of the symptoms I had been experiencing–a hissing sound and vertigo. Upon an examination, MRI, Hearing Test and CAT Scan, I was diagnosed with Meniere’s Disease, and was told that my hearing loss was permanent,” Young explains.
Getting that diagnosis was devastating.
“It was like somebody pulled the carpet out from under your feet. I thought the birds stopped being in my neighborhood. I said to my husband, ‘I don’t know where all the birds went.’ He was like, ‘They’re here.’ Things I absolutely loved to hear, I couldn’t hear anymore. It’s very depressing and it’s very sad. It’s very hard to function on a day-to-day basis. You just suck it up and you deal with it–but in reality, it’s really lonely,” she describes.
Especially for someone who makes her living face to face with others, talking and listening with clients and fellow pilates teachers, profound hearing loss has been very difficult for Young to navigate–functionally and emotionally.
“It’s like you’re a middle school kid that’s unpopular–you want to be part of people’s conversations, but people remember for five or ten minutes and then they start talking, turn their head and they walk away. What they don’t realize is very hurtful is they’ll say, ‘Oh, she can’t hear.’ But it doesn’t mean that I don’t want to hear. But nobody does it because they’re being mean,” she says, adding, “It really makes you feel sad and lonely, and you get really tired of trying to hear. At the end of the day, I am completely exhausted, because all day long you’re like, ‘I’m sorry. Could you repeat that again? I didn’t get that.’ I just do it over and over. Even though you have hearing aids, you still miss a lot.”
Her work through her studio, among the community she’s built of clients and instructors, has been one of main things that has allowed Young to stay positive. As a smaller, boutique studio offering group classes and personalized instruction, there’s a camaraderie and intimacy that everyone feels at Pilates Advantage–including the owner when she needed it most.
“It was very comforting and it enabled me to continue. Part of it’s because I was the owner of the studio, but I think if I was working at a gym, I would have had to leave. I couldn’t hear. At a certain point, I couldn’t use the phone at all. Eight years ago, there was no texting, most people made appointments or inquired over the phone. I’d have to have the girls that worked for me listen to the messages and write everything down, and then help me call people back. I would have to put it on speaker and then literally I would put my ear right on top of it. It was horrible,” she recalls. “My clients and the girls were just very patient and very understanding, almost like having a little bodyguard. Somebody would say something and they would look at me and they would know I’d totally lose it. They’d come over and put their hand on my shoulder.”
Young’s audiologist told her that the only thing that would help her hear would be hearing aids, but because they were so expensive–over $6,000–they were out of reach financially for her at the time. “That moment of having a possible solution right in front of you that was out of reach was an incredibly sad, frustrating, lonely and exhausting time for me.
It took her almost seven months to be able to find a resource through which she could obtain a pair of hearing aids, through the State of CT Department of Rehab. Since then she’s gotten a second pair (the life span of a hearing aid is about six years), and the cost of maintenance, repair and replacement is always looming.
“You have to pay to have them fixed every year. They’re guaranteed for a certain period of time and then they start to break and every time they break it’s $500 too have them fixed. Then after six years, you have to get another pair. I’m only 52 and I’m hoping to live to be 100, so I’m thinking how many pairs am I going to end up going through?” she muses.
Even in the transition from her first set to her current hearing aids, Young has seen significant improvement in the technology that’s available. She says she can do the interview by phone because her hearing aid operates on bluetooth technology, so she literally hears our conversation inside her ear.
With 60% of her hearing gone in one ear, and 80% lost in the other, Young is legally deaf. Trying to add some lightness to the topic, she looks for a bright side. “I don’t have to go to jury duty anymore, that was one good thing that came out of it.They gave me a waiver to get off of that forever.”
Helping Others Face the Same Challenges
Looking back on what she has experienced, it was important to Young to help others facing similar hearing losses and who–as was her experience–can’t afford them.
Every year on the anniversary of her studio, she holds a special weekend fundraiser to benefit a non-profit organization. In this, her 12th year, she will be raising money for a cause that truly hits close to her heart–the “I Can Hear You Now!” campaign to support the Hearing Aid Project run by the Hearing Aid Charities of America. According to its website, the effort “helps put hearing assistive devices into the hands of low income individuals.”
For instance, every $500 Young raises can help refurbish a pair of hearing aids, she adds.
“I just remember how devastated I was when I first found out how much they cost. So the thought of having someone find out … There are things that are 10 times worse than finding out you can’t hear, but it’s definitely an aspect of your life that you need to function and work and whatever, so to find out that you can help a little kid hear his mom read, or help somebody be able to get a job that couldn’t without the help,” says Young.
Young has created several opportunities on this anniversary week for clients and other generous community members to help support the effort, including:
- Purchase a t-shirt for $50 with the Pilates Advantage logo on the front and “I Can Hear you Now” printed on the back. All proceeds will go directly to The Hearing Aid Project
- Attend a talk at the Pilates Advantage studio on Wednesday Oct. 30 at 7 p.m. to hear from Dr. Amanda Shepard and Dr. Alex Zorn, both audiologists from CT–ENT. They will be giving a presentation on hearing loss and the relationship between untreated hearing loss and dementia, tinnitus (ringing ears) etc. This presentation will be free of charge.
- Sip and Shop on Friday, Nov. 1 at the studio from 4-7 p.m. New and returning vendors will be back from last year and adding some new variety for this year. Their participation in the event will benefit The Hearing Aid Project.
- Workout with the Pilates Advantage on Sunday Nov. 3rd from 9-11 a.m. for the“Round Robin Workout” series. Young will be running a variety of classes every half-hour, and guests can stay for the two hours or select and design their own! $50 donation suggested.
- Make a donation by writing a check to the Hearing Aid Project. All will be delivered to the organization.
Young says it’s very meaningful to be able to continue doing what she loves and to turn that into something good for someone else.
“It’s a wonderful feeling. And it’s easy for me because the people at my studio are amazing and generous. And every year I do a different charity, they always come forward and it’s wonderful. I’m very grateful that I can help someone that’s not going to have to go through what I went through when I found out that I couldn’t hear anymore. It makes me feel good to be able to help somebody. And it’s very easy effort for me,” she says.