Team CI Evaluation

Today, Brandt got the appointment date for his Cochlear Implant evaluation: July 30.  We’re not really sure what happened, but it took a month after his appointment with Dr. Awesome, where we found out he could get the evaluation, before he got the appointment date; and it’s still another 5 weeks away!  I know something strange must have happened, because Dr. Awesome had told us that the evaluation would be “in about 3 weeks” and that Brandt “could probably be implanted in mid- to late-July.”  But now his initial appointment isn’t until the end of July.  They’re blaming it on an issue with “a new secretary”; I just hope this isn’t a reflection of their Program as a whole.

We received a letter and packet of information from the Cochlear Implant Program a week after the appointment with Dr. Awesome, with a medical questionnaire for Brandt to fill out and return.  The letter began:

“Thank you for your interest in the Cochlear Implant Program.  The Cochlear Implant Team is comprised of a neuro-otologist, an otologist, audiologists, speech/language pathologists, and social workers.  These team members provide a comprehensive evaluation of candidacy for children and adults.  This evaluation is a process that looks at current communication skills, ability to use traditional amplification, and family support and involvement.  Several visits will be required for the evaluation process to be completed.”

Then it listed the 12—yes, a full dozen—people on the CI Team.  I don’t know if we will be meeting with all 12; I assume some of them work only with children and others only with adults, but it wasn’t specified.  I was also surprised that it said several visits were required for the evaluation.  July 30 is the last Friday this summer that Brandt has off of work, so I’m not sure what is going to happen or how long this whole process is going to take…

On the Initial Case History questionnaire that Brandt filled out, its “Hearing History” questions included:

• How old were you when you suspected a hearing loss?
• At what age was your hearing loss identified?
• What were you told was the cause of the hearing loss?
• Has your hearing loss changed since it was first identified?

The “Hearing Aid History” asked:

• At what age did you receive your first hearing aid(s)?
• Have you worn hearing aids continuously since that time?
• Do you currently wear a hearing aid in: Right ear/Left ear/Both/Neither
• What model hearing aid(s) do you wear?
• How old is your current hearing aid(s)?

The enclosed information packet about Cochlear Implants stressed that:

“Social/family factors and personal motivation are clearly the most important determinants of a person’s post-implant performance.  Despite the incredible technology and exponentially expanding experience in using Cochlear Implants, how well the individual performs is largely determined by the family support and personal motivation.”

So I am going to be evaluated as well; evaluated on how good a support system I would be if Brandt were implanted.  I’m not really worried about that part—I’m a certified Hearing Loss Support Specialist!—although the idea of being evaluated makes me feel nervous and defensive; like the panic I get when a cop comes up behind me on the freeway, even though I’m driving the speed limit.

The “new secretary” has e-mailed Brandt several times asking about his employment and health insurance, and presumably she is going to contact his insurance company to find out if they cover Cochlear Implants (he can’t find it anywhere in his policy if they’re covered).  I’m pretty worried about it, though 90% of insurance companies do cover them.  At the very least, I’m prepared for having to go several rounds of them refusing to cover it and us having to submit letters from Dr. Awesome, the Cochlear Implant Team, and an intervention with Advanced Bionics—they have an entire department devoted just to arguing with insurance companies!

  

“HHHHHHRRRRRRKKKKKK!!!”

About 4 years ago, a year after we had started dating, I asked Brandt a question that changed everything I thought I knew about hearing loss.  We were sitting in the living room; he was grading papers, and I was watching television.  He didn’t have his hearing aids in, and I wondered how much, if any, of the TV program he could hear.  “What do you hear right now?” I asked. 

“HHHHHHRRRRRRKKKKKK!!!”

I jumped.  “What was that?!” I yelled.  “That’s what I hear” he said, nonchalant about it.  “That LOUD?!” I asked.  “Actually, louder.  It’s been like that for as long as I can remember.  It used to keep me awake at night when I was a kid.  I thought everybody was like that; I think I was in high school before I realized it wasn’t normal.”  My mouth hung open in shock.  He shrugged and went back to his grading.  I sat there dumbfounded, embarrassed that I hadn't asked this sooner.

I thought that I was a great expert on all things hearing loss-related, since I grew up around Aunt Louise, and had been friends with Josie for several years before I met Brandt.  As far as I know, Louise didn’t have tinnitus (although she never complained about anything, so it’s possible…)  I did know that Josie was not afflicted with it.  She had told me that her Saturday morning ritual was to read the newspaper and watch TV without her hearing aids in, enjoying the complete and perfect silence.  So I just assumed that Brandt was the same way; watching him quietly grade his papers, I thought he was enjoying noiseless tranquility.  Nope, not even close.

Tinnitus literally means “ringing,” but can be perceived as a number of sounds such as buzzing, hissing, clicking, roaring, crickets chirping, beeping, whooshing, or a pure steady tone.  In Odyssey of Hearing Loss, one sufferer describes his tinnitus as:

“air-raid sirens pounding against my skull,” “ocean waves,” “loud lawn mower,” “a ton of bricks falling on a pile of church bells,” and “my brain is gurgling.”

It can be sporadic or nonstop, and ranges from a faint background noise to painfully loud and distracting.  An estimated 50 million Americans suffer from tinnitus, most of whom also have hearing loss.  It has many possible causes, including hearing loss (tinnitus is a symptom of hearing loss, never a cause), noise exposure, earwax buildup, ototoxic medication, and a host of medical disorders.  Tinnitus can be compared to a “phantom limb,” as the brain tries to make sense of the damaged inner ear and the lack of auditory input.

As I was in the middle of studying about tinnitus last summer for my Hearing Loss Support Specialist certification, I started noticing a faint tone in my left ear.  At first I ignored it, but it grew louder and more continuous, until after a few weeks it was a nonstop tone.  It sounded like the high-pitched squeal of an old television set; I couldn’t drown it out with background music, and it kept me awake and in tears every night for two weeks. 

Panicked, I got my hearing tested at Dr. Awesome’s audiology clinic.  My hearing was declared to be “within normal limits” (less than a 20 decibel impairment) except for a mild 25 dB loss at 2000 hertz in my right ear.  It wasn’t the ear that was hearing the noise, so the audiologist had no explanation.  I was desperate for an answer, a cure, or just some relief.  Brandt tried to be helpful by saying, “You’ll get used to it.  It’s annoying sometimes, but you’ll adjust.”  I screamed, cried, and threw a fit, which only made the tone louder.

I went back to my class readings, and had an epiphany.  Ototoxic medication.  About a month before the tinnitus started, my doctor had increased my dosage of blood-sugar medication.  I immediately went back to my old dosage, and two days later, the tinnitus started to subside.  After another week, it was almost tolerable.  I switched to an extended-release form of my medication, and after a few more weeks, the tinnitus was gone.  I could finally sleep in silence again.

Brandt hasn’t been so lucky.  Lately he has been waking up in the middle of the night, mistaking his tinnitus for external noises.  He’s thought it was the smoke alarm, a train, and a jet engine flying over the house.  Each time, he thinks it’s coming from a different source.  Despite this, though, he still doesn’t act like it’s a big deal.  He’s always very calm and mellow anyway, but he deserves some kind of award for dealing with this without complaint.  Sometimes he takes out his hearing aids and comments on how much better his Earless World is—

“Everything is so LOUD out there!  When I don’t have my ears in, my world is so quiet.  All I hear is my static, and it’s so nice.  When that’s all I hear, it’s easy to ignore it, and it’s very peaceful.”

When he says this, all I can think is ‘How on earth can “HHHHHHRRRRRRKKKKKK!!!” be peaceful?!’
  

Accessible Events

One of my favorite blogs, Offbeat Bride, has a post on how to make a wedding accessible to Deaf and hard-of-hearing guests.  The suggestions in the article include: reserving a seat up in front, giving a printed copy of the sermon/vows, and providing a Sign Language interpreter.  Other possibilities that the article does not mention are oral interpreters and CART reporters. 

An oral interpreter faces the Deaf/hard-of-hearing person and mouths what is being said.  Since only 30-35% of speech is visible on the mouth, speechreading/lipreading is a difficult skill to master.  Aunt Louise was a champion lipreader; I did not realize until my Hearing Loss Support Specialist classes that it was so difficult, since she made it look effortless.  I remember attending my cousin’s (Louise’s daughter’s) college graduation when I was in junior high, and Louise hired an oral interpreter for it.  She sat facing Louise, off to the side so Louise could still see the stage, and mouthed the ceremony.  After mouthing about two-dozen graduates’ names, Louise told her, “You don’t have to say all their names, just tell me when my daughter’s name is called.”  I laughed as the interpreter gave a relieved little smile. 

Louise also used an oral interpreter for church every Sunday.  The interpreter was a member of the church who would attend the early service, then interpret the second service for Louise.  A few years after getting her Cochlear Implants, Louise decided that she wanted to rely on her renewed hearing instead of the interpreter.  She loved the freedom of watching the choir and pastor, and hearing them, instead of focusing her attention on an interpreter.

CART reporting—Communication Access Realtime Translation—was unknown to Brandt and me until the HLAA convention last June.  CART is live (realtime) captioning performed by a certified court reporter on a stenotype machine.  The text is displayed either on a projector screen (visible to a large audience) or an a netbook computer (visible to the person holding it).  This is the same basic technology used for Closed Captioning on television.  At the HLAA convention, everything was captioned—the workshops, the ceremonies and presentations, even the socials.  It was wonderful!  Brandt took the picture below at the start of one of the workshops; the projector screen on the left was for the speaker’s PowerPoint slides, and the screen on the right was the CART captioning.  You can see the CART reporter’s stenotype machine and netbook in the foreground.

Even with all this technology, and all my knowledge about making public events accessible to Deaf/hard-of-hearing people, I fell way short when it came to Louise’s funeral.  Granted, I was in so much shock I could barely stand, but I was aware enough to know that we had to get an ASL interpreter.  At Louise’s mother’s (my great-grandmother’s) funeral, there had been both an ASL interpreter and an oral interpreter, for Louise and her Deaf/hard-of-hearing friends. 

I heard my cousin on the phone arranging for an ASL interpreter, which was a huge relief.  But I didn’t think about a CART reporter until it was too late.  We were trying to make all the arrangements on a weekend, with the funeral on Monday morning; by Sunday afternoon, when I realized that Brandt and the other Hard-of-Hearing, non-signing people would need captioning, I knew we’d never be able to pull it off in time.  Since I wasn’t immediate family, and they had more than enough to deal with, it didn’t seem like something I could burden them with.  I didn’t know any CART reporters in town, and it was a Sunday afternoon so contacting the agency would probably be impossible (so I didn’t even try).  Then there was the setup at the church—I knew they had large screens where they displayed song lyrics, so theoretically it should be pretty easy to do, but who would do it?  The pastor didn’t attend the Sunday evening visitation; I had been hoping to ask him then.  So I gave up without even making an attempt. 

At the funeral, the family had the choice of sitting on the far-right side of the chapel in front of the pastor, or on the far-left side in front of the ASL interpreter.  In retrospect, we should have sat in front of the pastor so Brandt could see him.  But I wanted to sit in front of the interpreter, so we did.  A number of Louise’s Deaf friends were signing along with “How Great Thou Art” when we sat down.  It was so beautiful.  Watching the interpreter was comforting and calming for me.  I recognized a lot of the signs, and learned a few new ones.  Afterwards, I asked Brandt how much of the pastor he’d been able to understand.  

“My usual, about a third.”  

I cringed.  We talked to the pastor out in the lobby, and he already had a list of people who wanted an e-mailed copy of his script from the funeral.  Several more came up to him as we talked, saying they hadn’t been able to hear what he’d said and needed his notes. 

I was mortified.  Here I am, the goddaughter of a tireless advocate for people with hearing loss, carrying her name and (I hope) her legacy, and I didn’t do a thing to help them understand her eulogy.  I didn’t even think to ask for a copy of the pastor’s notes beforehand.  Their last memory of Louise is of her inaccessible funeral, where they were only offered an interpreter for a language they don’t know.  And while that’s par for the course to Hard-of-Hearing people, this time more than any other, they should have had equal participation.  It’s a hard, embarrassing lesson, but one I will surely learn from and never forget.  I can only hope that they get the funeral script from the pastor.  I’m still waiting for my copy.
  

Terminology Lesson

What’s the difference between the terms Deaf, deaf, Hearing, hearing, hard-of-hearing, and hearing-impaired? The answers are: biology, culture, and personal preference. With over 34 million Americans experiencing some degree of hearing loss, it’s important that we know these distinctions.

“Little-d deaf” and “hearing” are medical, biological terms. They indicate whether a person has the ability to naturally hear sounds through their ears. “Big-D Deaf” and “Hearing,” however, are cultural terms. In Anthropology, culture is defined as a group of people who share the same beliefs, values, and behaviors. I am both “hearing” and “Hearing,” because I can hear normally and because I live and socialize in the Hearing World. Brandt would be considered culturally Hearing, because he still functions in the Hearing World, although biologically he is becoming deaf.

Cultural Deafness requires accepting the values of Deafness, and is solidified by communicating in American Sign Language (the history of Deaf Culture and ASL will be discussed in an upcoming post). Big-D Deaf people do not view their lack of hearing as a disability that needs to be fixed. Instead, they call themselves a “linguistic minority,” because they identify themselves primarily through their language. They are very proud to be Deaf. Interestingly, biological deafness is not a prerequisite to being Culturally Deaf. Sign Language interpreters and CODAs (“Children of Deaf Adults”—hearing adult children of Deaf parents) are often considered part of the Deaf World, because they can communicate in fluent ASL and have extensive experiences with and knowledge of Deaf Culture.

The difference between “hearing-impaired” and “hard-of-hearing” comes down to individual, personal preference. When I was studying for my certification as a Hearing Loss Support Specialist, I was surprised (and embarrassed) to learn that many people with hearing loss find “hearing-impaired” to be offensive. They do not like to be defined by an “impairment” of their hearing, and prefer the term “hard-of-hearing.” I had been using “hearing-impaired” for as long as I could remember, thinking that “hard-of-hearing” was just outdated terminology. Boy was I wrong!

I immediately asked Brandt and Josie about this, and they were surprised as well. They both prefer to call themselves “hearing-impaired,” because “hard-of-hearing” is cumbersome to say and sounds rather antiquated. Brandt didn’t mince words: “Of course I’m hearing-impaired—my hearing is greatly impaired! Why dance around the issue with a politically-correct phrase? I have a disability; my hearing is damaged.”

Oftentimes, “hearing-impaired” is used to cover both Deaf people and people with hearing loss, but it’s actually better to say “Deaf/Hard-of-Hearing” when referring to both groups together. So when you notice that your DVD has subtitles available “for the Hearing-Impaired,” they should instead say “for the Deaf and Hard-of-Hearing” to avoid offending anyone.

As a side note, “Earless” and “Nearly Earless” are terms created by Brandt and myself, respectively.

Class dismissed!
  

Welcome to My “Nearly Earless” World

My great-aunt, godmother, and namesake, Louise, lost her hearing at the age of 20 from a bad reaction to an antibiotic. Completely deaf for 40 years, she learned to lip-read so well that most people talking to her never realized she was deaf. I grew up watching the Closed Captioning scroll across her television screen, and making sure she was facing me before I spoke. In 2003 she received a Cochlear Implant (“CI”), and the following year became the first adult in our state to receive a bilateral (second) implant. Her journey back to the Hearing World has been incredible to witness.

My grandmother lost a portion of a hearing as a child, from a bout with scarlet fever. She’s the kind of woman who never lets anything get in her way, so her hearing loss was just something she didn’t worry much about. It was a running joke in our family that “Grandma Jean can’t hear you, just speak up!” Several years ago, she underwent a breakthrough procedure from the same surgeon who implanted Louise’s CIs, and her hearing was restored.

10 years ago, I met Josie at our church’s Singles group. She was born with severe hearing loss and wears hearing aids. Although I now live two hours away, I still drive in to see Open Captioned movies with her every month or two.

My husband Brandt and I have been together for 5 years. Given my lifelong experiences with hearing loss, I don’t think it was random coincidence that we met. Brandt began noticing his hearing loss in high school, and was fitted with In-The-Ear digital hearing aids in his early 20s. When I met him several years later, he was fairly adjusted to his hearing aids and loss (although I had to convince him that I didn’t mind watching TV with the Closed Captioning on). His hearing deteriorated further, and after 4 years of bad advice from a quack audiologist, he finally got an appointment with Louise and Grandma Jean’s super-surgeon, “Dr. Awesome,” last Spring.

Thinking that his hearing loss “wasn’t that bad,” Brandt was shocked to learn that he had lost 40 decibels of hearing in 11 years, would probably be deaf within 6 more years, and was “in the gray area” of candidacy for a Cochlear Implant. The next few months were a whirlwind of activity. We joined the Hearing Loss Association of America, attended their national convention in Nashville, and Brandt was fitted with $10,000 worth of Phonak technology: 2 shiny blue Behind-The-Ear hearing aids (BTEs), a Bluetooth transmitter, and an FM system—80% of which was paid for by our state’s Vocational Rehabilitation office.

In the last year, I have kept busy educating myself on any and every issue surrounding hearing loss. I became certified as a Hearing Loss Support Specialist and am learning American Sign Language. Since Brandt is too busy running the Science Department at our local college AND getting his PhD to have time for ASL classes, I go home and teach him the signs that I learn in class. We have met a number of people in our local Deaf community, as well as from Cochlear Implant socials and HLAA.

“Earless” is Brandt’s term for being without his hearing aids. When he got his first set of hearing aids, flesh-colored ITEs, he visualized Mr. Potato Head popping his ears off as he was taking them out. So he announces to me that he “is Earless” when his hearing aids are out, so I know to talk loud (not that I need a reminder for that, though!). In the world of chronic illness, the terms “Ill Spouse” and “Well Spouse” are commonly used. With hearing loss, there is the “Deaf/Hearing-Impaired/Hard-of-Hearing Spouse” (depending on how someone identifies themselves) and the “Hearing Spouse.” Another term for the Well/Hearing Spouse is “Shadow Spouse,” because we are not always visible. Hearing aids, Cochlear Implants, and Sign Language are visual, obvious. The spouse, though, is often in the shadows. We don’t have hearing loss, we don’t wear hearing aids, we don’t directly suffer the social isolation or embarrassing misunderstandings that people with hearing loss go through every day. However, we witness these issues up close and personal, and we suffer vicariously as our loved ones suffer. We’re “Nearly Earless.”