What’s a Normal Life with Hearing Loss?

IMG_6337Recently I met a man with an obvious hearing loss. He used hearing aids and assistive listening devices, yet he missed parts of what I said. So I asked him if he’d like to learn about the local chapter of the Hearing Loss Association of America (HLAA). “No,” he said. “I’m not interested in giving more energy to my hearing loss than I already do. I would rather live a normal life.”

I wondered, what is a “normal” life with hearing loss? How much energy dedicated to it is “too much”. I wasn’t sure so I decided to map what my day looks like.

I wake up to my alarm clock. It’s designed for people with hearing loss; instead of ringing it makes a booming sound and vibrates vigorously under my pillow. The vibration is important, since I have no hearing after I remove the processors of my two cochlear implants at night. The alarm clock is also connected to my smoke and carbon monoxide detectors so that if those devices are activated, my alarm goes off.

Sometimes, in spite of my carefulness the vibrating device falls off the bed and I don’t wake up. That’s one of the reasons I have a hearing service dog. He alerts me to sounds especially when I have no hearing at night. Unfortunately the one thing my dog hasn’t yet learned is to alert me when the booming sound goes off. (Yes, we’re working on it.)

Recently my alarm didn’t wake me and my hearing dog slept through it. But my cat scratched my face until I woke up and turned off the alarm. Then he stopped. Maybe I have a “hearing loss” cat!

Once I’m up, I take the implant processors out of their electric dryer, remove the rechargeable batteries from their charger, put the batteries in the processor and put them on. Before I leave my home I check to make sure that I have spare batteries and assistive listening devices for challenging situations.

When I leave home I don’t think much about my hearing loss – until I need to pay attention to it.

If I get a phone call, I have to think how I’ll handle it. If I know my caller speaks clearly, I will simply go to the t-coil setting on my processors and answer it. If I know they don’t speak clearly, I‘ll probably let it go directly to voice mail, since my iPhone transcribes the voicemail to text. Other times I take out Cochlear’s “phone clip”, a very useful device that connects to my iPhone through Bluetooth. Rather than keeping it paired, I connected it each time as Bluetooth drains the batteries of my iPhone. Then I place the clip on my chest so it optimizes the best hearing for the caller. Often I need to fuss where the phone clip sits as the “hot spot” changes slightly for every call. It’s a fuss but I hear so well with it that it’s worth it to me.

For different hearing situations, my processor has auto scan, which automatically senses and adjusts the angles of the microphones on my processors, depending on the level of noise in the environment. Before auto scan, I had to adjust the setting manually or go through a remote device which I usually forgot to take along.

If I’m having trouble understanding what people are saying, I’ll ask them to speak louder, or to look at me directly so I can lip-read. If a person talks to me from another room, that’s the easiest; I simply don’t’ know they’re talking to me so no need to do anything!

If I still have trouble hearing especially when talking to multiple people or noisy environments, I use an assistive listening device. My current favorite is Cochlear’s “mini-mic.” It connects to the processor wirelessly once it’s initialized. Once that’s done, I attach the mic to the other person. It’s kind of a pain, but has such a dramatic, positive impact I don’t mind.

I also lip-read without even thinking about it, and if that doesn’t help will try to figure out what’s been said through context and logical deductions. This isn’t hard but it takes concentration and energy. The truth is we’re using so much more energy than a person with normal hearing that we often get exhausted (Auditory Fatigue). It’s important to recognize this fatigue and take care of ourselves.

And then, to add a little extra spice, sometimes I have to change my batteries in the middle of a conversation. Or my processors get knocked off my ears; fortunately they have never been damaged.

At the end of the day, I’ve get to reverse the process – remove my processors, put them in the electric tray, put my rechargeable batteries in the charger, set my alarm clock and make sure the vibrating devices sits securely under my pillow, and sleep with my deafness.

For me, this investment of effort has been completely worth it. At this point it’s so automatic that I hardly think about these steps. The “return on investment” has been substantial. I’ve become fascinated by what I do, what I’ve learned, met so many wonderful people through HLAA and come to terms with my hearing loss. It’s made me a happier person leading a fuller life. But maybe it’s not worth it to everyone. It certainly didn’t seem to be worth it to the man I mentioned at the beginning of this piece.

SCROLL PAST ALL THE COMMENTS TO LEAVE YOUR COMMENT. Thanks, Pat

Posted in Advocate, Blog, Uncategorized and tagged , , , .

COMMENTS (click each section to view all comments)

26 Comments

  1. What a wonderful blog. I have cat who also have woke we up as the alarm went off. I tell people, but they don’t really believe me. Is it ok if I share this with my support group, it is so helpful. Marcia Reno

    • Oh I love it. So we both have “hearing cats”. I was so annoyed at him until I realized that he was trying to get my attention.

  2. I think maybe I understand the point he was making. I have a moderate to severe hearing loss and wear hearing aids. I also am legally blind without my glasses. Just as I do not find it necessary to attend a group for those with vision issues, I do not find it necessary to attend meetings for those with hearing loss. When I first learned that I was losing my hearing 20 years ago, I turned to a group online for support and suggestions. I have found online forums for the hard of hearing (like SayWhatClub) to be far more helpful than HLAA because you can describe a hearing loss issue and people will suggest solutions/products that worked for them as well as telling where you can get the products they recommend. Besides which, online forums can provide a way to socialize without having to be able to hear! That is why I have suggested SWC to people I met (as well as my ENT doctor). But aside from the cyber forums, I don’t want to have a social circle that is based on hearing loss. I’ve been to conventions with various hard of hearing/deaf groups over the years but find that I look forward to returning to the real world where I am “mainstreamed” with people who may not have hearing loss but do have other things in common with me.

    I use a captioned phone, have a TV Soundbox for listening to my TV, and use a neckloop with t-coil setting in my hearing aids when in meetings/buildings that are looped or an FM receiver in buildings that have an FM system like the church that I attend (they provide the receivers). No I don’t always understand what people are saying in one to one conversations and have to ask for repeats, but I am not shy about it and will tell them to look at me so I can speechread if necessary.

    • Thank you Diane. I totally agree with you about SayWhat. They are an awesome group and I’ll be attending their convention this year for the 2nd year. I don’t mean to compare HLAA to SayWhat – they are so different and both so awesome.

    • Hi, Diane!

      I don’t know if you self-identify as deaf-blind?? I know it took me SO many years to be able to say that I am, with some level of self-confidence. I was born a premie (2lb, 20z), and have been legally blind and hard-of-hearing my whole life. Over the years, my hearing slowly deteriorated, and especially in the last couple, it took a few dives, leaving me currently with a severe-profound ski-slope (75 / 85db – 115 / 120db) loss. My vision has also changed: growing up, I had a buckle on my left eye’s retina, causing my right eye to become my dominant eye; my left crossed inward towards my nose. That, combined with my thick glasses and (resented) hearing aids, made me quite introverted for many years.

      I learned to be in denial about my hearing loss. I stopped wearing my hearing aids in middle school, and then didn’t wear anything until I was 30. I went and got hearings that ‘I’ wanted, on my own terms. Since, I’ve gone through 4 pairs of stronger and stronger HAs. I currently wear Phonak Naida Q70UP btes, integrated FM receivers on the bottoms, and a Roger FM Pen (which has become so invaluable in helping me hear!). I don’t always wear my “ears” and tech, as often as I should, thus opening myself for deserved scolding from girlfriend, who will tell me that, “YES, you ARE that deaf.” (not meaning it harshly, but it makes me face reality, even though I still confront feelings of denial). 😉

      Back in March, I also finally realized that my night vision had made being a pedestrian difficult and anxiety-provoking, because I couldn’t see anything in front of me, except for blackness and the onslaught of car headlights. I took it upon myself to get O & M (white cane) training. I had a few hours of instruction, then was left on my own. I am still self-conscious, feeling vulnerable and anxious, and it also depresses me that my body is no longer cooperating with me. Some days, I feel like I can only handle one sensory loss at a time…either the deafie, or the blindie…pick one, haha!

      On a different-yet-related road…I started playing and studying music at age 15. I play and compose on 6, 7, and 8-string guitars, play hand drums, shruti box, and compose my own electronic music (I used to DJ at small raves in upstate NY back in 2004-2007). As my hearing kept declining over the last couple years, it gave me many worries about how I would continue in my graduate Music Therapy program, as well as in my professional practice of private clients and adaptive guitar lessons. I know I literally only have my lows and mids left; my highs are pretty much gone. I am totally unready for the CI talk; my audiologist hasn’t brought it up yet, and I read several peer-reviewed studies about musicians who were late-deafened, gotten implants, and quit playing or singing altogether because everything sounded so unnatural, robotic, and messed up their pitch recognition and overall music enjoyment. So… IF my hearing decides to keep heading south, I don’t think I’ll pursue CIs at present.

      That’s just my…lengthy…story. I appreciate you if you read it all. I’m also thankful to have met another person who “gets it”, with having a dual-sensory loss. :)

  3. I would welcome going through all of your daily tasks, if only I could receive the benefits of a Cochlear Implant! I have one and still have NO speech recognition. After work everyday, I am totally exhausted but often keep on going; perhaps to a meeting, a store, out to dinner or just to visit some friends. I rely strictly on reading lips and remain hopeful that as technology advances that I will hear again. Cochlear of Americas occasionally sends a technical guru to my audiologist appointment to try remapping. I have been profoundly Deaf since 2000 but refuse to give up. I wear my processor just to occasionally hear the click, click, click of someone’s high heals. That sound gives me hope and I can only hear that if I have on my processor. I often leave home without it because I cannot hear but believe it helps me lip read better. I refuse to let my hearing loss make me a prisoner in the hearing world! However, home alone and not having to figure out what is being said, is a wonderful thing. I enjoy it! I once met a man who had the same views as the man you mentioned. I think they are actually in denial of their hearing loss and would prefer that nobody knows. I find it rather sad, because they are missing a lot and have no desire to help themselves. Regardless, who really knows what normal is even among people in hearing world? Everyone has a battle to bear! In addition, there are millions of people with hearing loss who refuse to learn sign language. Parents not wanting their Deaf child to learn ASL because they have a CI. I relate that to the men not wanting to be involved with HLAA… people want to appear to be “normal’! I want to learn ASL because it is another way of communicating and if I every hear again, I will need a back up when the technology fails, as it often does.

      • I want people to realize what a great person that you are, Pat!
        I met this wonderful lady who was looking for a room mate for the 2011 HLAA convention in Washington, DC. Over the next few days, I discovered how ‘real’ and down-to-earth she is. At the time, she had 1 cochlear implant & 1 hearing aid. I had just gone bilateral CI that previous January. Talked about being bilateral–how I felt that it was so much more “enriched” hearing and added so much detail to being able to hear again. We got to meet fascination men, women and children from all walks of life and all ages at the convention. For me, personally, I think the most amazing event was seeing a performance of “The Wiz’ at the Kennedy theater! The theater had been specially prepared for the hundreds of us with all sorts of hearing loss–even had 2 sign language interpreters ! The theater was equipped w/ closed captioning for those who wished to use it. The most awesome thing was that I was able to HEAR it all with my CIs! I lost my hearing overnight at the age of 57–had no hope of ever hearing again. I was terrified of thinking how I could survive without hearing. I had never heard of cochlear implants at the time. I was blessed to find a fantastic ENT with some fantastic audiologists who helped me on my Hearing Journey. Since I met Pat, she has founded HEARING LOSS REVOLUTION, an enterprise designed to help those with hearing loss. Since she attended her first convention with me in 2011, this lady has presented programs about hearing loss to many groups–including in Japan! She is now an avid traveler who enjoys hiking & camping (among other things) across this country. She presents articles intended to help the everyday man-woman-child with hearing loss deal with situations like not being able to hear people in casual groups, getting help for hearing loss, guiding people to certain products that she knows from personal experience can help those with hearing loss (by the way, she in NOT a representative of any particular company, so there is no company loyalty involved–she recommends particular items because she knows they work). Pat is down to earth economically and realistically in all that she does. Get to know her–she is really a fantastic, knowledgeable, realistic, person with a great sense of humor!

      • Oh Jeanni – thank you so much for your very very kind words. It was my honor to meet you as well. You too are always advocating for people and yourself. A big hug. Pat

  4. Very interesting, Pat. My situation differs from your in that i”m only (only!) severely hard of hearing and use hearing aids. My current hassle is getting my domes, once I insert them into my ears, to stay there. Sometimes they slip partially out and I hear somewhat less well or experience screeching. I’m working on my insertion technique and at least it’s better than it was.

    Pat McG

    • Thanks Pat. Good luck getting your noms to stay in. You almost have to laugh at the challenges we have – who would have thought you’d need to work on your insertion technique!

  5. Hi Pat:
    I very much appreciated reading your post. I find your suggestions are interesting. I have a Roger to use in difficult hearing situations. Thru the VA I was just able to get a second Roger, and with a new Phonak Bolero V, I hope to be able to use the two Rogers at the same time. Unfortunately the new hearing aid was defective and had to be sent back, so I haven’t had the opportunity to demonstrate how two Roger work. At noisy restaurants I ask everyone at the table when speaking to me to try not to have cross conversations. I recently took a course at Fairleigh where one of the two professors who were both presenting the course at the same time, refused to wear the Roger, because it would go down to her cleavage!

    • Thanks Roger. I’m interested to see how the 2 Roger Pen’s work at same time.
      And a professor refused to wear the Roger because it would go down to her cleavage – really – she couldn’t figure something out that would work?!

    • Hi, Roger!

      I too, have a Roger Pen with my Phonak Naida UP btes. I was more proactive in my grad classes last semester, when I was in a dual-taught class with two profs. I asked them to wear the Pen, and they had never seen such a thing, or had had a deaf-blind student in their classes, but they would pass it back and forth and wear it with no hesitation. They did whatever they could, to help me. This could also have been because I was in a grad-level psychology class with a room full of future mental health counselors. 😉 I even got up the courage to tell the entire class about my “ears” and my tech, at the beginning of the semester, and everyone was supportive and thought it was so neat. I was so used to feeling ashamed and in denial, that I was almost overwhelmed at the genuine support I received. :) I either have my girlfriend wear it around her neck (Lanyard mode), or I plug it int the charger base, connected to the TV (with larger captions, too). :)

      Like you, I am so lost in group conversations…anything over 2 or more people, and I stay silent throughout, just trying to lipread and follow along…an exhausting process for sure.

  6. Hi Pat,
    I loved your article, What’s a Normal Life with Hearing Loss. There definitely is not a universal Normal Day; and I doubt there is an individual normal day. Perhaps there might be a typical day with variations. I have a few comments on what you wrote.

    You mention that it is normal for you to take your batteries from their charger, put them in the processor, and put them on. I was told to put my batteries in the electric dryer with the processor. So every night I take a fully charged battery from the charger and put it with the processor in the dryer. I put the battery from the processor on the charger. So there is always one battery (plus all the backups) charging and one that I am wearing or is in the dryer for tomorrow. This is what my audiologist told me to do.

    What app do you use to transcribe your voicemail to text? I am just curious. My iPhone died and I have not gotten a new one. Stephen’s iPhone is too old for most of the transcribing apps. What I do use is Mobile Caption Call. It turned my iPad-mini , which did not include a phone, into a phone. I do not use it very often, but when I do, I can read the captions of the call just like on my desk Caption Call Phone. Only my family has that phone number and the iPad is only turned on when I am using it. I do intend to get another cell phone, but do not think I need an expensive iPhone.

    I am thinking of getting a Phonak (Advanced Bionics) attachable receiver and their personal microphone. There are times when it would be useful. They also have some type of TV link. I will look at both at the HLAA Convention. I have started a list of items to look at in the Exhibit Hall. We both need more Dri-Briks for our Zephyrs.

    I couldn’t agree with you more about Auditory Fatigue. Why don’t audiologists mention this to their patients? It is so important to realize that it exists, it is real, and not something “wrong” when it occurs.

  7. Hi Pat, I enjoy reading your blogs. How do you get your IPhone to transcribe your voice mail?

    Teri Wathen

    • I’m not sure what model of iPhone you need to have but definitely an old one wouldn’t work. Some carriers offer it for free and others don’t. I use Verizon and they offer it for free.

      To see if your carrier offers it for free, go to:

      Settings
      General
      Accessibility
      Subtitles and Captioning
      click on closed captions

      Please let me know if you have any questions.

      Pat

  8. My cat wakens me too, but rather than think she’s doing it as a “hearing cat”, I’m sure she’s been yowling in vain and is hungry!!! I really don’t care the reason…I’m just happy to have that nudge!! I too belong to both SWC and HLAA and enjoy both…Our HLAA chapter is as much social as informative and the social part is not predicated on our being deaf…We’re friends!! Thanks for an excellent blog, Pat…

    • Thank you Judy. Yes, we’re friends and well, I’ve never been thrilled about my hearing loss but the good is to have you as a friend.

  9. I especially love the end of this piece….that with intential practice, much of the tedium becomes less tedious and more automatic, more routine. I’ve been thinking about this a lot lately, (especially after participating in your pilot.) I need to do for communication what my father used to advise me to do about life in general, even when I was an elementary school, long before I had a hearing loss: “Get on things,” he would call out to me in his upbeat voice when I was leaving in the morning. I need to more routinely and less sporadically “get on” all of these things you mention. The status quo can pull us back into accepting less that the best of what we can be. Onward!

  10. Thanks Pat for sharing your techniques which improve your quality of life. Thanks,also, for exploring the topic of tinnitus at the last HLAA chapter meeting. Information shared is well worth the effort! Keep up the excellent work and enjoy the upcoming conventions. Best, Carol

Leave a Reply

Your email address will not be published. Required fields are marked *

Loading Facebook Comments ...