american sign language

Hearing doesn’t get better over time

I have not been nearly as much of a gadabout as I used to be in the states. Partly it is lack of familiarity with the area, including the fact GPS is just not as useful here. Partly It has been a lack of things to do that are of interest to me. But as time goes out and I get around more my hearing loss is driven home to me time and time again.

I went to a meeting yesterday dealing with ex-pat issues from private health insurance to resident visas to wills. It was held at a small restaurant/bar. Lots of noise from ocean out the back door to music being played over the huge TV, to general sounds in a restaurant/bar.

Often I feel like being an English speaker in a Spanish-speaking country is like being deaf for a different reason. However, when you’re with 6-8 people and basically you can’t understand much of anything that’s going on and they’re speaking English all of a sudden I find myself trying to sign with people who don’t sign.

I’m told to go out and make lots of contacts and build a community locally and yet getting out and communicating is nightmarish.

Recent attempts to find a deaf community have been fruitless.

Celebrate Three Significant Songs

There we have it – today’s Writing 101 prompt – 3 significant pieces of music.

I decided to write the response on AnotherBoomerBlog because this blog addresses being hard of hearing, deaf, and dealing with a society that is in large part uncaring about people who are differently able. The deaf, blind, hard of hearing, physically disabled, etc. are tidily brushed to the margins.

A room with a view (yesterday’s assignment) could be metaphorical. It could be the internal landscape of a blind person. Their room could be full of wonderful smells and things to touch. There is no internal metaphor for three significant pieces of music because when hearies (people who hear) think of music they think of sound.

My first boyfriend was born without auditory nerves and had zero ability to hear music. He had no concept of music as a hearie would understand it. He felt vibrations, and his old truck’s radio rumbled bass all the time. He build a removable back for a couch that housed a bass speaker so he could feel the rhythm of music.

I tried to insert a youtube video with no sound, only sign, but after 15 minutes of swearing I gave up.  😦  Feel free to go to the F-You song American Sign Language performance with no sound. For the following songs the hearie challenge is to turn off the sound. Next go to Hero – it is closed captioned for hearies and the hard of hearing. Frozen’s Let It Go is also captioned as are some of the others. Country Music is next – Farmer’s Daughter. Then there’s Story of my Life.  Imagine by John Lennon.  Just the Way You Are. Lastly, go to Sean Berdy and 10 dancing kids – don’t worry, you won’t lose an eardrum.

Adding the incredible expressiveness of ASL performances to music that often the signers can’t hear makes a performance that is – to my mind – superior to sound alone.  Let It Go gains a new dimension when you see them really let it go.  Seeing the tears in Hero adds a dimension.

So here is my twist – how many of you who don’t sign can provide me the three best ASL performances of your life that are the most meaningful to you?  No sound allowed – or at a level where you can’t understand the words. You can chose from the above or find something else. You’ll find that only songs with words are meaningful unless it is dance.

 

 

 

 

 

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.

When You are Unconscious it Doesn’t Matter

Today I had a day surgery. Last night it poured freezing rain and it was still a frozen mess while my son-in-law drove me off to meet my fate. He’s a good driver, BTW.

When we got there I was bemused about the name of the unit.  Surgery Day Care – it has a certain cachet to it, don’t you think?  We have day care for kids and day care for dementia patients – now there is day care for surgery patients. Who knew?

Really, though, it was just plain old Day Surgery.  Maybe the person who designated the name was fond of the sayings of Yoda.  Day care surgery you will have. Healed you will be.

Beings as this was the place I had the bad experience with the other day I was pleased to find out that I had a mixed bag of experiences.  The anesthesiologist (aka the ‘gas passer’) didn’t know sign, but he knew Deaf and HoH and said I could call him by his first name, which was cool. He also was concerned about the ototoxicity of Tylenol and said he’d be careful. He always looked right at me and he had a great voice.

My prep nurse was awesome – again, didn’t sign, but was easy to teach to talk to me rather than around me. The ER nurse was a loss whether he was wearing a mask or not. Fortunately, Andrew (the anesthesiologist) really ran the communication part of the show.

My surgeon forgot about my hearing loss. We do the “I can’t hear you” thing almost every time we meet, but it is not like he’s my primary care, so I tend to be forgiving towards the ortho who is doing his best to put my various body parts back together with toothpicks and glue.  He tries hard and he’s honest with me – which is a huge issue for me. Just tell me how it is and will be.

I went out like a light in seconds – then it is really pretty unimportant what I don’t hear.  They had my knee marked (cut THIS one) so the appropriate knee was incised in various places to fix the tear(s) and get a light in to get a look around. I don’t know how many incisions since the knee is wrapped and then wrapped again in a huge ace wrap.

To add a thrill to the day my daughter could not come get me as planned as one of the kids came down with something closely resembling either flu or food poisoning. I texted one of my best friends to come get me and his car had a flat on the way. Why the dickens he drove on it until it looked like a black rubber Christmas wreath neither of us are quite sure about.  He changed it in the parking lot rather than where he realized he had a flat. Apparently it made sense at the time.

Nonetheless, he and I communicated by text – and when he’s with me he has a fantastic voice so no problems there.  He and my brother have the only voices I can recognize over the phone.

I insisted on walking out of the hospital since the surgeon told me I could.  The nurse and my pal sorta shook their heads and walked with me – yes it hurt, yes I’m glad I did it, and really, at that time I wasn’t using my ear. Walking on my ear would be rather difficult.  Instead, I was limping down a hall looking determined and testing my stability.

Got home to two nurses from VNA (Visiting Nurses Association) who were here to work with my daughter.  Amazingly enough, both of them were totally great for a deaf or HoH person.  My fav had a pocket full of homemade dog biscuits and the picky Baby Dog ate two of them.  Score.  Baby Dog was absolutely insane with joy when I got back, which is as it should be. While recovering I was dreaming about petting her – so the shared joy is mutual.

So, I had a successful operation on the torn bits of the knee, was able to communicate easily with a few folks and with determination with others. The operation was done under a general anesthetic so they could have been whispering in Swahili while listening to We Are The Champions by Queen and I wouldn’t know the difference.

Under the best of circumstances

I belong to a wee little Druid Grove. The old timers there know my hearing is bad, but I’m a known quantity so they don’t think about it a lot. In fact, a few of them forget it most of the time and start making so much noise I can’t hear what I need to hear. Hidden issues remain hidden even over many years, even after many statements. We all have our own abilities and disabilities anyway from wheelchairs to canes to wretched puns to creaky bones.

Every year at Yule the ceremony begins with lights out and windows open to replicate the creation myth of the Norse – cold and dark.  It is probably my favorite part of the entire liturgical year despite the joys of being unable to lip read.  Even an Interpreter would be useless in the dark since I’ve got a frozen Franklin cup full of ice in one hand and sometimes a candle in the other.

This year the Dean and the Secretary pointed out early that I’m functionally deaf and how people need to talk directly to me and be sure I know they’re talking to me, not just talking in general.  This was because there were  new individuals present. Two of our visitors were quite talkative – Chatty Kathy and Chatty Karl. And we also changed the format – all meeting around the feasting table, rather than sitting in a circle in the living room of the Dean. In general, circular situations are more HoH/Deaf friendly.  Fortunately, I tend to know the meditation and a good deal of the material being presented after all these years. So even if I don’t hear it I get it – hard to miss a candle being lighted or a frozen cup of ice. 🙂

This year the extra people resulted in a very long ritual – since it is in blót format there’s more participation with the Toast, Boast, and Oath. We didn’t have a Sumbal this year (asperging) and for those of you interested in this, there’s a lot of mutually contradictory information on the web. 🙂 In general I don’t like anything that would get my HA wet.

One thing I did note is that the most talkative one (who didn’t interact much with me) knew how to come up behind a deaf or HoH person and gently direct with her hands on my shoulders so that I automatically moved to one side or the other. I don’t think most folks know how to maneuver around the Deaf of seriously HoH and that may be worth an observation here.

If you want to get attention, stamp hard on the floor a few times (assuming there are not a zillion people around) or pound on the table (again, assuming dishes won’t fly off) so that we can literally “feel you.” Another method is to flash the lights, which our Dean used to great effect with hearies and the deafies alike. That’ll get our attention immediately.

But in a crowd, if you come up behind a Deaf or HoH person a gentle touch to one shoulder or the other either gets a subtle move on my part away from that touch or lets me know you’re there. Please don’t ever grab one or both shoulders and attempt to move someone or swing them around to face you. That’s rude.  If you end up moving between two signers, just move quickly, don’t scrunch down. You might want to sign Excuse Me if you know how –  just keep on trucking, through.

Since this isn’t a high stakes situation (medical care) and since I’m familiar with the ritual and most of the folks there, this is an under the best of circumstances for me. I can relax and let life flow. Besides, the cooking is always fantastic for the feast. 🙂

When things are handled right

I had the misfortune to go to a small, local hospital on Christmas Day.  I had a persistent ear infection that simply refused to give up the ghost. When the itching, burning, swelling and pain became simply too much to bear I decamped to the tiny ER in Ayer, MA.

By this time I could not get my hearing aid in my ear due to pain and swelling.  For all intents and purposes, I am functionally deaf when the HA is out and the ear canal is swollen.

To tell the truth, I can say “I’m functionally deaf” all day long to people in my regular world and have it serve no particular purpose, but this once it made a difference.

Everyone from the registration clerk to the nurse to the doctor were educated to ask (repeatedly) if I wanted an interpreter. They all knew how to get my attention. They all understood my need for a quiet location if I were to understand anything at all. They all got my attention before speaking to me and spoke directly to me without looking away.  I’m so totally impressed with all of them.

Because they accommodated me with a private room and quiet environment I was able to cope with a combination of what sound I could hear and lip reading. Also, to be honest, I didn’t want to wait for the staff terp to be called and arrive.  Had the conditions not been so ideal, however, I’d have requested a terp in a heartbeat.

I knew what I needed and I got the prescription ear drops promptly (ahhh, blessed relief!). However,  I’m still not wearing my hearing aid until the infection is resolved because I have to carefully sterilize the earbud before putting it back in so as not to cause another infection. Which means I’m still functionally deaf.

Now, to be fair, this is the same facility I’ve raised holy heck with a couple of times over what I considered inadequate treatment of a relative of mine. Different issues, though. Different doctors. Maybe more enlightened times are coming. We can hope so. I’m tickled pink.

Expectations and Dreams on the Net

Have you ever met someone on the Internet and then when you met up you found you had dashed dreams or expectations?  It happens to all of us – we build up a belief about who we are talking to.  Ditto in them thar olden days of pen pals.

I’ve had the good fortune to meet folks IRL (In Real Life) whom I first met on the net and no matter how prepared I am for the fact our expectations or dreams of who they are will never be who they really are, it is always a surprise. I will have you know that my pal BitcoDavid of DeafInPrison.com doesn’t look a bit like a black dog. And he wears shoes with toes.  OTOH, my friend Pastor John looks just like himself, but who knew he liked Indie movies?

When a hearie and a deafie connect online and if the hearie has never met a deafie expectations are fraught with peril.  Okay, BitcoDavid got it that I wasn’t going to hear all that well – and we met at a very noisy place – so it was probably a baptism of fire for him.  Now he’s learning ASL – Woo hoo! – I really gotta get down there and see my signing group again someday.

Communications in dimly lit places are pretty much impossible to someone who reads lips and desperately seeks to interpret spoken voice – especially if there is other noise in the general area. Turn up the freaking lights, would ya? I can’t see ya talking. Was that a word or did you just clear your throat? Just a minute, I’m looking for a Tiki Torch here… What do you mean that candle almost set yer mustache on fire?  Those murmured little nothings really are nothing if you can’t hear them.  And, if you stop to think about it, a deafie is probably going to be on edge rather than relaxing into the moment.  Anyone here do tactile sign? 

I’ve had hearie friends insist to me that they also don’t hear things perfectly, but since they manage to have conversations over the top of a blaring TV, in the middle of a dimly lit room with a buzz of noise so dense it is like a wall of sound, or in a noisy restaurant and bar, I really don’t think they understand the problem.  While I’m fading into the wallpaper, hoping I don’t have to respond, they are socializing. How is this possible?

Speaker at a party: Hi, I’m Walter and I sell spritzers.

Hearie:  I love white wine spritzers!  

Deafie:  (hearing “spits”) You’re selling what? 

So, if you are a hearie who has a deafie friend, just remember that communication to you and communication to us is  different.  Lipreading and watching for whole body communications (body language) is exhausting.  I can only do it for just so long and then my brain just flutters away.  A hearie can relax into “passive listening” and even let their attention wander and still pick up auditory cues.  If I’m following what you have to say I’m so focused on you that it can be misinterpreted as anything from flirting to obsession.  My eyes are my ears.

At the end of a long day of listening to other people, I’m beat.  If you have a deafie friend there are things you can do to help.

1. Face us when you talk to us – and make sure we know that you are talking to us, not just talking in general.

2. Don’t over-pronounce words – it makes it harder to lip read.

3. Dont shout – it distorts the voice.

4. Speak at a moderate rate of speech – speaking very S L O W L Y distorts mouth movements.

5. If you have an accent, please be patient, because it changes the lip movements you make as well as the sound you produce and it will take longer to process until we learn your voice.

6. Turn off or turn down extraneous noises you can control – like the TV or background music.

7. Realize that a hearing aid doesn’t create normal hearing, it merely supports the ability to hear some of the sounds of speech – and, unfortunately, also a lot of non-speech sounds.

8.  Sound travels in a straight line – not around corners.

9. If we can’t see you we may not be able to hear you – at least not as speech.

10. An exasperated, “Never mind!” is never the right response.

Spy vs. Spy – Hearing versus Hard of Hearing

Recently I determined that I’d had another hearing loss milestone – I can’t find the “click” associated with a turn signal. So when I had my new fancy-schmancy earmold fixed I had my hearing aid sound levels tweaked.  It got raised a couple of notches.  In a quiet environment it was about the same, but I knew once I was out in the world it would be quite different – and it was.   I’m not sure I hear the “click” any better, but I do hear a lot more than I did before.  Maybe I’ll find the click in the noise.

Today I went to a spiritual gathering where about 13 folks congregated.  Hearing during the meeting is always exciting (meaning I miss a lot of what is said) but  the increased sound levels were helpful.  When people talk with their hands obscuring their mouths I simply don’t listen to whatever they have to say – besides, generally they are not talking to me anyway.

After the meeting is always a big pot luck.  Today, as always, the sound ended up being overwhelming.  It is like seeing a tsunami come at you – you can’t outrun it and there’s no point in trying to negotiate with it.  No one else even notices it.  In fact, they’re surfing while I go down for the third time.  Glub.

Being around a big group of hearing people means they will start off talking “normally” (whatever that is), but as time goes on it is as if they’re in a bar – the voices get louder and louder.  I’m always amazed when little people end up bellowing over the entire table –  size has nothing to do with the set of pipes on a person.  🙂

About half way through my head was pounding (noise headache) and I took off my hearing aid and decamped to another part of the “great room.”

I have no idea how hearies do it.  It’s like tossed salad – a carrot shred, a piece of iceburg lettuce, a radish slice, a dandelion green, and some salad dressing – only it is words being flung through the air.  “Iceland blue salt cream whale thank corn pulled rice,” I hear.  “Soft duck bird lamb sale mud zombie blue sulpher potato.”  Urgh.  Word salad.  “You pie want chicken dish salty spa volcanic balsamic pork chocolate gluten.” 

While a dozen signers (ASL) might have six conversations going I can drop into and out of them by paying attention to the signer.  No can do with hearing people – it is all or nothing.  I’m told if I’d always been able to hear I could join up and drop out of conversations by switching channels (sort of), but all I hear is, “Do you bug seven ocean fish butter.”  Oy vey.

And all this being said, hearies are who they are and this is how they communicate.  Deafies and the Hard of Hearing focus so much on communications that we are actually much more skilled communicators in many ways.