Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

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Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

Sounds of Madrid

There are days where my unilateral hearing can make me feel so vulnerable. Going outside can be such a challenge and one that I have to mentally prepare myself for every day. I live in a city, and as soon as I open the apartment block door, I walk out into a mess of noise. Loud deep roars of traffic and the chatter of people force me into a bubble of isolation. When I am surrounded by sound, I cannot sense when there is something approaching my deaf side. I do not realize when someone is walking next to me, or if a bike or car is about to pass me by. When there are background noises, it is difficult for me to focus on conversation; I can’t hear individual sounds clearly, and my ear and head fill with pressure from the sounds, which also adds to the difficulty in understanding speech. If I am outside by myself, I try to keep my deaf ear to the wall, or next to the traffic, so that my good ear has a better chance of hearing noises of significance. When I’m outside with my boyfriend or friends, I have to keep them on my hearing side and find myself constantly looking at them, to check if they have said something to me.

Travelling on the metro is uncomfortable. The loudness of the train approaching and the screech as it nears the platform can be almost unbearable. Once on the train, there is a bell sound and an announcement of each stop. This bell can be piercingly loud. Before arriving to a station, a recorded announcement says: “Próxima estación [name], correspondencia con línea [number]”: “Next station [name], transfer with line [number]”. Some metro lines have announcements to mind the gap between the train and the platform. Some trains have a whistling sound when the doors close. The metro is a challenging bombardment of sounds. I worry when I’m travelling alone that people might talk to me, and I won’t be able to hear them, or even worse, not even realize they are speaking to me, if they are on my deaf side. They don’t know I can’t hear them. I always worry about seeming rude if I don’t respond to people.

Madrid is a city that is bursting with the music of performers and entertainers. Every part of the city has its own soundtrack. People hop on and off of metro trains; wheeling their portable amplifiers, and various instruments: panpipes, guitars, violins, even miniature pianos. In metro stations, and in fact, anywhere in the city, you might encounter a man playing his violin to the soundtrack of Titanic. You might encounter someone playing the drums, made of pots and pans or other recycled materials, to a fast backing track beat. You might encounter another violinist, this time without a backing track, and passionately playing a well-known piece of classical music. You might encounter guitarists strumming guitars wildly and singing with raw passion. When walking into town, you can hear a Spanish guy sitting on the side of the street playing his guitar, singing Bob Marley songs in his own unique style; short high-pitched staccato sounds.

This intrinsic creativity, that is present in every part of Madrid, is enchanting. But it is also something that now presents me with a challenge. Now I am trying to enjoy the sounds of Madrid again. Now I am trying not to focus on the tinnitus that the loud sounds of music can bring, and not focus on the perpetual worry of missing a stranger’s words. Instead, I want to focus on learning to enjoy this wonderfully noisy city that I live, and that I am trying to love again.