hearing augmentation

Deafie on Deafie is easier, right? Um, no.


I’m often the identified person who is expected to attend to someone else with a hearing problem. Yes, I do have a lot of information, but most people don’t know that. What I am is up front about my hearing loss and ask for access so the hearies think I’m the expert and I’ll help everyone else with hearing loss because I have some vast store of insider knowledge and know just what to do.

I know about my hearing loss. I don’t have insider information on anyone else’s hearing loss. I’m not an audiologist nor an ear doctor, just one more deafie in the world trying to live my life and maybe help a few other people along the way.

I recently met a guy with bilateral hearing loss that is probably in the serious range, maybe headed towards profound. (See chart below) It took a few encounters, but it has become apparent to me that his loss isn’t just one of not being able to hear at a normal volume, he is missing chunks of tonality. And like many older people with hearing loss he’s got problems with upper registers, which includes women’s voices, birds, dripping faucets, and fricatives such as the /f/ in the word fine. It creates conundrums of being able to hear a phone ring but barely able to distinguish the conversation.

Unfortunately, many of the older late deafened are not tech savvy and are at a distinct disadvantage. Many have no hearing aids, have no idea about any services to help with hearing aids, don’t know the difference between analog and digital aids, and some don’t have computers, let alone smart phones, and rarely do they know ASL. The gent I met has no hearing aid, no smart phone, no cell phone, and barely has a functioning desktop computer. He also doesn’t have a clue about taking a pencil and pad of paper with him.

He has not acted on information I emailed to him; when I’ve asked about his follow up I get non-sequiturs. That tells me he is guessing at what I’m saying. Next time I know I’ll be seeing him I’m going to take my iPad and type in what I’m saying so he can understand me. Maybe I can show him that a pencil and paper or a tablet can enhance his ability to understand conversations. That’s about the limit of what I can do unless he follows up.

So, hearies, we deafies really don’t have an easier time of it with another deafie than you do. Not unless we both sign or we both understand a least something about coping with hearing loss through things like shared knowledge about equipment that can make life easier. One thing I do have that many fully hearing people don’t is nearly infinite patience dealing with a late deafened adult trying to cope.

Even if I do know about services and equipment it only goes so far because the other deafie needs to be able to gain my knowledge and then act on it. Denial is a wide river and people seem to be afraid of moving out of a comfort zone, no matter how uncomfortable that zone has become.

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Lip reading – or not


Attended services in a laity led fellowship today. One of the two presenters had a full beard. Since I’m learning how to decipher the Texan version of English I need to be able to lip read to have a chance of getting what’s being said. Later we had a spritely older woman who gave her impression of attempting to swallow the microphone while speaking so lip reading was out of the question there as well.

I was doing a mental Oṃ maṇi padme hūṃ chant to pass the time as I stared out the window at falling leaves. My monkey mind suggested I could break out my own FM equipment and try that next week, so maybe that’s an option. After all, it would bluetooth the sound to my hearing aid.

And so it goes, adaptation to life back in the states with Texas style English. Loud venues. Lousy acoustics. The plethora of personality types we run into in life that make communication easier or more difficult.

I bet you thought I died


Its been awhile.  That’s what happens when life runs away with you.

I lost my HA in my travels and need to get a new one. I’ve finally determined after an arduous search that it is not between the seats in my car. 😦  I hope my insurance is still in force, although even with that it is $750!  If not – there’s no way I can come up with another $3k.

Yesterday I took a friend to a major medical center in a major metro area I’m not familiar with. The ER was not private vehicle friendly and my friend is in a wheel chair. I ended up having to use the ambulance area because that was the only way to get her in and time was of the essence.

Thankfully, someone came out to help her while I darted inside trying to get help. The problem came when I got boxed in by ambulances and could not go out the front or the back. I had one in front, two to the sides and one behind.  Unfortunately, the car does not have thrusters like a Harrier Jet and cannot rise straight off the ground. Need to look for that option next time. (right…)

A guard asked the (no lights/no siren) ambulance behind me to move. This made no sense as that one had a passenger it needed to drop off and the one in front of me did not.

Let us add to that a winding drive going down a hill with huge curbs jutting here and there. And a passive-agressive ambulance driver who moved barely enough to let me out. I’m sure he was irritated, but really…it made me take longer.

And then the fact I couldn’t understand – or sometime see – ear
the guards who stood behind me to yell at me which way to move. I kept saying, “I’m Hard of Hearing! I can’t hear you!” So a bunch of them gathered – behind me.  (sighing)  On my deaf side.

It was a mess. And my wee little doggie was still alerting about how sick my friend had been.

I did get out without hitting the curbs or the ambulance. Whew!

I acquired a few spectators who stood around shaking their heads and shaking their fingers including a guy who looked like Santa in a wheelchair with hair almost down to the ground who was very condemnatory. What? There’s nothing on TV? No reality show?

I wanted to jump out of the car and yell at them – you try doing what I did – crossing an unfriendly border with a sick person in your car who is having problems breathing. And do it while remaining calm and chatty to keep the person more at ease. And then drive to a major hospital in a part of a metro area you’ve never been to before. Where there is no non-Ambulance drop off point. See how well you figure things out.

I did not get out. I did not yell. You’d have thought the half-dozen guards there would have done some crowd control, but nooooo.  I drove down the block, stopped at a fast food restaurant, let the dog out and calmed her down before our long drive back.

Just another day in the life of the HoH woman engaging in random acts of kindness.

I hope my friend is okay. I haven’t heard anything yet. No news is good news?

The Dreaded Adverb


I stand in the gazebo in the middle of the Townsend Common and peer into the shadows of massive deciduous trees. The towering oaks and maples create a deep well of shadow. Hidden in the shadow are dark green picnic tables, freshly painted for the summer season.IMG_1880

Feathering out from each side of the shadows are graceful dark wood park benches with black wrought iron trim. The benches are cast in artful design around the gazebo. They surround it in a seemingly haphazard manner. Perhaps they are at the best places for hearing. Perhaps a whimsical designer arranged them. They’ve been in the same places for the last year.

The church to the east begins a muffled peal. Well, to me it is muffled, but the dog startles a bit. Loud. It must be loud. I don’t have my hearing aid in to walk the dog. I look at the clock faces on the front and side of the bell-tower and realize they display different times. How many peals will there be? Nine. Ten.  I check the time on my smart phone. Noon. Exactly. Neither of the clock faces reads twelve o’clock.

Brass colored folding chairs for the Thursday night concert lean against the wall or slump on the floor, tossed hither and yon by recent stormy weather. I envision how, tomorrow, they’ll be arranged in ordered fashion for the band, unlike the graceful litter of  wooden benches.

IMG_1886Here and there, black light poles erupt from the ground. They match the bold black metal fencing that marches around the edges of the Common. Half-barrels full of flowers line Main Street – ten of them – filled with a riot of brilliant magenta petunias. Several more of the half-barrels are next to the sidewalks in the Common itself, filled with a softer pink flower reminiscent of roses.

Concrete walkways crisscross the Common with a long St. Andrews Cross from corner to corner and a short path east to west across the middle. Today it is me, the dog, and ten thousand starving mosquitos. The dog and I descend the stairs of the gazebo, walk back to the car, and breathe a sigh of relief when the mosquitos are outside and we are inside.

Death to Adverbs – stripping adverbs from writing.

The benefits and drawbacks of being hard of hearing


Benefits

1. When my daughter and one of the grandkids are having a conversation and need a little privacy I can look away from them and they have privacy – all I hear is the murmur of voices.

2. If they need even more privacy because the conversation is, um, energetic, I can take my hearing aid out.

3. When my grandson is playing games on the iPod that are annoyingly loud, I can take my hearing aid out.

4. The younger generation loves texting. I love texting! Win-win!

5. I do not need to hear to crochet. 🙂

Drawbacks

1. Talking to me from the next room makes communication impossible.

2. Yelling down the stairs is similarly pointless.

3. Talking to me when the TV is on, the X-Box is being used, and someone is listening to music on the iPod means your chance of success is very poor.

4. I am often baffled by what that potential noise is. I refer to this (mentally) as the Name That Noise Game. Yesterday night I leaned out the door, looking around to see if we were having another rainstorm. It was the shower upstairs.

5. The sounds of chewing. Do you hearing people actually get used to that?  Hearing aid out.

Why I demand professionals act professionally


As so often happens, cross-pollination of ideas occurs between Facebook, Blogspot, WordPress, Readit, and many other sites.

I’ve been feeling as if this blog is full of nothing but complaints (at times) and then something enlivens me  to write yet again.

A person on another site, in a galaxy far, far away, suggested seeing the humor in being mistreated by medical personnel who can’t remember the person they’re talking to is extremely Hard of Hearing (deaf). I mean, aren’t they the dumb sort of person who talks louder when the person is a foreign language speaker as if that would help?

The humor in it? REALLY?!!!

Is it funny that medical professionals are too unprofessional to consider the needs of the patients they are serving?  Yanno, my insurance and my co-pay are what support the doctors and nurses and staff at the clinics. THEY work for ME. Would it be funny if I just didn’t pay them? Or did things that made it impossible for them to work with me? Like not show up and not pay for a missed appointment?

Lets put it in another perspective:  A man goes into an orthopedists office and can’t walk since his lower leg has been broken. He’s dragging himself in with his fingers. Does the nurse:

A. Open the hallway door and suggest the man drag himself down the hall on his hands, squirming like a snake?

B. Provide the man with a wheelchair?

If you picked A and are in a medical program of some type, please drop out now. Yeah, I know someone hurt that badly today would go to an ER, but the point is the same. Would you ignore the needs of someone who needed help?  We, the patients of the world, neither want or need anyone without common sense and compassion in any medical capacity. There are others far better suited to serve individuals with disabilities – which is all of us at one time or another.

I’ve had people ask me how I can be so incredibly entitled as to demand being treated like a human being. Why can’t I understand this is just a human foible? Doesn’t it just show how humorously inadequate people are that they can’t remember I’m HoH?

The difference between friends/acquaintances and professionals:

I have long-time friends who can’t remember I need them to walk to the right of me and that I will deal with (with some requisite eye rolling) because they are not my medical providers. I am not paying them to be there for me.  However, as soon as someone is working with me/for me in a professional capacity all bets are off. I will remind people a few times, after that, their inability to remember (especially after I tell the receptionist to remind them I’m still deaf) is beyond belief.

I’ve been a social worker and a lawyer and I d**m well never forgot a client had a specific problem. Why? Because I pay attention! Because it is critically important to the service I am to provide.

Over the past few years I’ve gotten to the point I’ve been known to stand stock still at a doctor’s office and refuse to follow someone who is talking away from me seconds after I’ve just told them to face me when they talk to me. I will sit near the door but refuse to respond to someone who refuses to speak louder than a whisper. Am I supposed to guess if someone is calling me or someone else?

I am a human being and I have a right to be accommodated for my specific needs. It isn’t difficult.  I’ve had volunteers at hospitals take note of what I need and walk up and gently touch me on the hand to let me know I need to go thither or yon.

I have friends or acquaintances who are hard of hearing, deaf, blind, or deaf/blind or who are orthopedically incapable of certain things, and I expect all of them to be treated with dignity and respect. I expect the mentally challenged and the mentally ill to be similarly treated with dignity and respect.

Just as no one should be forced to crawl down a hall, dragging a broken limb behind them, so should I not have to beg to be allowed to have adequate communication with professionals who are working for me.  They are not paying me to be there. I am paying them for their services. I don’t ask them to use ASL with me (though it would be lovely) but do require them to treat me with the dignity I deserve and I’ll return the favor.

I’ll say this for my doctor – he knows I can’t hear. His staff knows I’ve got hearing issues. I LOVE my doctor and his staff. My doctor treats body, mind, and spirit and it shows.

 

 

Networking


The problem with being deaf or seriously hard of hearing (HoH) is that unless we are part of a larger Deaf community or involved with organizations for the hard of hearing we tend to be isolated souls.  It is not that we want to be, it is simply a fact that oral communication is generally limited for us. However, now and then we have a breakthrough.

There are blogs for the D/deaf and HoH. Blogs dealing with Meniere’s and blogs about CIs. There are groups on FaceBook (FB) that cater to the D/deaf and HoH in a variety of capacities. I’m in 3 such groups – one professional, one focusing on ASL and another that is more conversational.

Not long ago one of my blogging pals, Wendy of Picnic with Ants mentioned she no longer needed her relatively new hearing aids (HAs) because she now has bilateral CIs. Recently on FB another individual mentioned a need for replacment HAs that could not be met because of no longer being a part of the work force.

A contact with Wendy and a contact with the FB gal (who happens to have a blog on ASL on a different blogging site) and a connection was made – much to the delight of both parties. And I was more excited than both of them together. 🙂

I’ve previously returned older, serviceable digital HAs to my audio service provider who sends them on to be refurbished and donated to children who cannot afford them. That’s great. But what about adults who are not working and cannot afford them?

In general, insurance does not pay for HAs. And there’s the rub, because it is now known that untreated hearing loss leads to a loss of brain density which is related to dementia. Dementia is a huge problem in our elderly population today and is a drain on financial resources. If $6k in HAs every few years could prevent tens of thousands of dollars or hundreds of thousands of dollars in custodial care costs it appears to me to be the height of stupidity on the part of the medical insurance industry not to market hearing insurance aggressively. Keeping people functional would be an enormous cost savings. What is wrong with the bean counters that they are missing this? I’m not sure, but I’ve a niece in the health insurance business so I shall ask her about her thoughts on this.

Back to networking:  It appears the Lions Club accepts donated hearing aids to benefit men, women, and children who cannot afford them. It also appears that the Starkey Hearing Aid Company accepts donations, but I’m not sure how they are handed out. Hearing Loss of America has a financial assistance program. In Massachusetts the Massachusetts Commission for the Deaf and Hard of Hearing helps individuals get hearing aids, although funds are limited. Not every state has a commission for the Deaf and Hard of Hearing, but it might be wise to contact state government and see if your state has assistance.  Of course, for individuals in the workforce your state’s Vocational Rehabilitation office can assist in paying for hearing aids so long as they are related to employment.

It is important that deafies or HoH folk network so that HAs that are functional but live in dresser drawers (unless they are the backup HAs one should have) find their way to people who need them. Behind the Ear (BTE) is the only kind that can be easily recycled (a new ear mold will do it) although In the Ear (ITE) can be donated and the parts used to build another HA. My hearing loss is at such a level that an ITE won’t work for me anymore – I’m BTE from here on out now.

It is estimated that only 10% of people worldwide get the support they need to deal with hearing loss. We need to start engaging in some serious networking and rabble rousing to have HAs covered by all insurance.

Another Ear Infection Another Hospital Visit


I can only describe it as having “mumps of the ear.” What made it so bad is that I was medicating for post-surgical knee pain and it also covered the pain of an fulminating external ear infection.  By the time I realized I was in trouble I couldn’t get my HA in and my face was starting to puff up. Such fun!  And I was with the grandkids so had to wait until I was “off duty” (so to speak).  On the good side, the ER wasn’t busy at that time of night.

At least this time I could do my own voicing. I couldn’t hear worth beans, though, and I felt a little bit like I was acting Autistic doing my rocking in the chair with my hand over my ear. I guess we all get that way when the pain gets bad enough.

The doctor couldn’t get the scope in my ear far enough to see if I had an inner ear infection; partly because the ear canal sorta swelled shut, and partly because pulling the top of the earlobe up made me sorta try to duplicate the look of the poor soul pictured in “the scream.”

When the doctor saw me rocking from the sharp stabbing pain (I tried to ignore the burning, throbbing, and itching) I got a couple of Tylenol on board and the nurse did her best to get ear drop into the ear canal. More imitations of “the scream” from me.  Then came a prescription for stronger ear drops to fill when the pharmacies opened the next day, and another prescription for oral antibiotics too. Gonna kill this junk since this was my second late-night visit for an ear infection since December.  I think they’d rather we not keep meeting like this. 🙂

Since the ear drops I left with didn’t have much of an effect (I still had ear mumps the following morning) I filled the scripts the next day. I still have a tiny bit of swelling, but it no longer looks like I have ear mumps and today I was able to jam the newly cleaned HA in for awhile. Still some swelling in the canal and around the ear, but there is a definite improvement. I am sure the grandkids would disagree on that since I’m still doing a lot of deaf nodding when I realize that the only way I am going to understand is if they text me.

I’ve been told that if I get a CI I can avoid these infections since what causes them is my allergy to the silicone and plastics that fit in the ear canal. Unfortunately, I’m apparently not a candidate for a CI since I’m not going to offer up my one “good” ear and the “bad” ear is totaled.

I can’t remember having one ear infection before I started wearing a HA. Now it is nothing but trouble. Sometimes I wonder if it is worth it. If I lived in a Deaf community I doubt I’d bother with a HA except for rare occasions. Since I’m starting to lose sirens (unless they’re REALLY close) I’m not sure they even help much with emergencies on the road.  I just rubberneck all the time.

It’s been awhile


Yeah, I’ve been lagging in posting. Why? Probably because there have been few new challenges that have come my way regarding the hearing thing. Who wants to listen to a rehash of the old ones? Not to mention that I’ve been down with “the plague” – a severe cold exacerbating the asthma that gave me severe laryngitis and has now devolved into a long, drawn out bronchitis. All viral of course, so no treatment except to outlive it. (sniffle, hack, cough, sniffle)

I did end up at the ER with this version of the creeping crud. The consensus was I probably needed a chest x-ray to make sure I wasn’t getting pneumonia. So off I went. However, the laryngitis was so bad I could’t even whisper. This left me the option of writing or signing. I usually voice for myself. This time I thought, what the heck, ask for a terp so s/he can voice for me.

The hospital was WONDERFUL about it. Absolutely no problems there. Johnny on the spot. There were only three little problems.

1. The terp was contacted over a video system and the monitor was not exactly large. I could have used a telescope to get a better view.

2. The ER was very busy and I was not in a private area where one could hear oneself think – probably because someone with more severe problems was in there. Makes sense. Except for one other problem.

3. The interpreter could not hear the nurse. Even if the nurse was screaming into the designated sound area the terp was bewildered. It was an absolute avalanche of sound and everything hit the terp just like it did me.

However, I was able to sign to the terp and have her voice for me. The problem was that she couldn’t sign the nurse’s questions back to me because she couldn’t understand them. Eh? What was that you said? Huh?

That particular foray into remote terping ended up with the nurse and myself writing notes back and forth.

This little hospital really doesn’t have a lot of private rooms where they can put people with special needs. It is the size of a large postage stamp. But the staff is kind and caring so I wasn’t upset. We just worked it through.

Thankfully, I didn’t have pneumonia and went home with instructions to use Afrin Nasal Spray (sorry for the ad) for NO MORE than 3 days less my nose get addicted to it (A nose can get addicted? Who knew?) and to get 12 hour Sudafed (sorry for the second ad) and take it as long as I had symptoms. I still have symptoms so I’m still taking Sudafed. I ponder taking another run at the nose spray.

What this demonstrates is that while a terp who was there with me could have dealt with the noise level, the terp who is working remotely may be as unable as the deaf or HoH person to understand what is going on in a very noisy environment.

I now have a friend working for a company providing this sort of terping so I’m going to mine information from her and get back to all y’all.  🙂

And oops, I have to run now.  So without further ado, here’s a new post.

It’s All About Communication


I spent most of the day hanging around Mass General Hospital today while a family member had surgery. During these many hours I spent some quality time pondering the imponderable. Why do the Hard of Hearing have so much trouble with service providers, particularly medical personnel?

On the one hand, I can go to NVH and everyone I run into there knows how to relate to a hard of hearing person.  But…they have an Interpreter for the Deaf on staff – and are proud of it! They do their best to offer assistance promptly and efficiently.  MVH on the other hand seems to have no idea how to relate to someone with a  hearing problem.  I mean clueless – totally.

When an ENT and their office staff members are equally clueless I am both baffled at the lack of competence (lets call it what it is) and frustrated by the lack of response.

So what’s the difference between MVH where no one knows what to do and NVH – a tiny, isolated, HoH and Deaf friendly hospital? What gives? It can’t be corporate philosophy as they’re both owned by the same mega-chain.

I kept kicking the can down the street mentally and came back to the concept of AWARENESS.  Good old being in the moment awareness. And how do you become aware – even in the Buddhist sense of learning to be in the moment? Training followed up with practice.

Not a handout no one reads, but pervasive institutional training.  Someone at NVH took the time to make it a HoH and Deaf friendly facility.  Training and practice. You can’t learn anything without training of some sort and some kind of practice in using the training.

It isn’t about hearing  Not everyone can nor should get a CI. It is about communication.  And to be able to communicate with anyone you have to be aware of communication styles.  Without adequate training and practice – or some positive exposure to the HoH or Deaf – you have folks who are blissfully unaware that they are inadequately serving clientele.

It is why I’ve literally told more than one doctor: “You are not competent to serve this patient” when I’ve acted as a patient advocate. It is why I don’t hesitate to pull the plug on an incompetent provider who is unwilling to learn.

So, having had this “awakening,” I’m at the hospital making notes on my trusty iPhone.  

Tonight I started a Google document presentation. It’s in rough draft and it’s out of order.  It’s something I can put up on the web and make accessible to the world.  I might reach out to some terp type folk I know. Gotta start somewhere.

Then I plan on creating a neat, tight little document in big type that can be printed and handed out to  providers who take our hard-earned money and give bloodily little back in return regarding communication.  Something with just a few easy points – because they aren’t going to read much – and nicely phrased to be informative and non-confrontational.

Not everyone is as obnoxious confrontational aggressive assertive as I am, so a handout needs to be short and sweet.