Snail Tails (Tales)

Sharaine Rawlinson, Midwest Center for Postsecondary Outreach

Good morning. My name is Sharaine Rawlinson. I am the associate director of the Midwest Center for Postsecondary Outreach, at Saint Paul Technical College in St. Paul, Minnesota. I supervise 12 states and provide training and technical assistance to colleges, universities and community-based rehabilitation programs. We teach them how to work with deaf and hard of hearing students/ consumers.

I travel a lot. You probably saw Cheryl and I on the PEPNet (Postsecondary Education Network) satellite feed a few weeks ago. Okay. I go to a lot of conferences, maybe ten, 12 a year.  I have to say at this conference the people are so nice and there's so much new information. I'm not hearing the same thing I always hear over and over again at most deafness-related conferences.  So, thanks to all of you and thank you so much for the warm welcome and the opportunity to meet so many new people. I don't even feel like a stranger.

My story's a little bit different than what you will hear from most deaf people. I was hearing until I was 14. I knew from the age of five I was going to be a doctor. However, that changed when I became deaf.  I volunteered at a hospital. I worked 40 hours a week for about five weeks there. Then on my last day there, they asked me if I would work in a quarantined room. They didn't have enough nurses on that particular day. And I didn't mind. I was willing to do anything. At that point I knew every nook and cranny of the hospital. So I scrubbed up, put on the mask, the gown, the gloves, the whole thing, all the precautions that you need to take. I still, however, contracted spinal meningitis from the patient who was in the room. Two weeks later, I nearly died. I was paralyzed from the waist down and was in a coma for about five days with a fever of 105 sustained over a period of time. In fact, I was expected not to live. They expected that if I did live, it would be in a vegetative state.

Clearly, though, I did not die. My sense of humor may be a little stranger than it was before this all happened but I am walking again. My brain is still here, most of the time. I hear nothing. Nothing whatsoever with my cochlear implant off.  I heard nothing at all for the next 23 years. I had tactile response 110dB in one ear, 117dB in the other. Right now with my cochlear implant off I hear nothing at all.

My girlfriends taught me fingerspelling.  They learned it from Captain Billy on TV in Albuquerque. I, on the other hand, always had a terrible time with it. I always looked for a specific shape of the hand to figure out which letter they were -- and it wasn't until I became deaf and two friends took me outdoors, sat me down on a wall and taught me fingerspelling that I was finally able to understand fingerspelling.

I went to a regular public high school. Now, I have to tell you I am old. At that time, in 1974, the government had not promulgated the rules about Public Law 94-142, now called the I.D.E.A. There were no guidelines or rules that people could read to learn how to comply with the law. I got notes by handing out carbon paper. It wasn't the fancy CRT paper that is used now. I used old-fashioned black carbon paper that students put between pages in their notebooks and then gave me the carbon copy for whatever notes they took.

I love science. During my senior year of high school, I took a second year nursing course in anatomy and physiology.  We handled notes for this class a little differently.  What would happen is I would tape lectures and then give those to a secretary at school and she would transcribe them for me. The poor woman, when I took anatomy and physiology, that wasn't really her bag. But I gave her a copy of the notes from other students in the class and between those and the tape recording, she was able to work her way through.

At any rate, I eventually ended up at NTID. I had been deaf less than three years when I arrived at the NTID campus.  I did not consider going to Gallaudet, it would have swallowed me up because the entire campus was comprised of only deaf students.  NTID, though, provided me with an environment with the deaf and hearing students mixed on campus, where I could integrate. I eventually got my degree in social work.

NTID had interpreters and note takers which were almost entirely new concepts to me. I had no formal instruction on how to use interpreters.   I just figured out what to do with them. It took me a long time to trust a voice interpreter. And I didn't really start feeling comfortable with a voice interpreter or using an interpreter whom I didn't know until about ten years after I graduated from college. In high school I learned SEE signs. I'm seeing some reactions to that here in the audience, but I want to let you know that it helped me immensely because my primary language was English. The teachers taught me SEE using songs.  It was the teaching through songs that helped me develop my initial signing skills.

About 1983, "Newsweek Magazine" ran an article on cochlear implants. Reading that article caused my family and my then-husband’s family to call me and tell me all about it. In 1985, I was evaluated for a cochlear implant. This was when 3M was experimenting with development of the Vienna device, a single electrode unit.

It's a very interesting experience going through that testing process.
In order to test for appropriateness of an implant, one would go through minor outpatient surgery.  The doctors took me into the operating room for just a short time to insert a temporary electrode. They inserted an electrode into my ear and then they wheeled me into this huge room that had a mainframe computer. Here they connected me up to the computer. Startled, I realized I could hear! I was in absolute shock! I couldn't figure out the sound was. But I could hear it. The sound was sharp and it was painful. It was something I really wanted to stop. I couldn't figure out what the sound was until I realized it was me, my own laughter. Through that test, the doctors determined that the cochlear implant would, in fact, benefit me.

Surprisingly, perhaps, I chose not to get the implant at that time. I was working fulltime in rehabilitation and job placement, as well as going to graduate school fulltime at the University of Kansas.

In addition to leading a very full life at that time, I had concerns about some possible side effects of the cochlear implantation, including facial paralysis and other types of problems. I'll show you later a slide of the inside of the head and I will show you where the facial nerve is located and where it runs parallel with the auditory nerve.  When you see the diagram, you will understand how easy it is to hit the facial nerve and cause facial paralysis as the doctor works near the auditory nerve. I did not want that to happen to me.

Eleven years later, I began to reconsider cochlear implantation. I began to meet more people using it. As a person who was born hearing, I missed music. Now, if I know people I'm not shy. But if you don't sign, that's when I become shy. If you sign with me, I am not shy and quite extroverted. If you are born deaf you probably can't relate to this but as someone born hearing and could hear for many years that was important to me.

Mayo Clinic is one of the best hospitals in the world.  Fortunately for me, it is located in Minnesota, where I was living. I decided that I did want to get a cochlear implant and the one place I wanted it to be done was at Mayo.  The decision to implant was not easy. I knew that if I went ahead with it that there were people who would reject me. I knew that I was risking my career in the field of Deafness, but I decided I was ready anyway.  The decision was mine and mine alone.

It took three appeals, but I finally convinced my insurance agency that they should cover my implant. The first denial as stated as, “we don't cover cochlear implants.”  My response was that they covered breast implants for cancer patients. They paid for prostheses for a leg amputee, an arm amputee.  Cochlear implants are referred to as auditory prostheses. With perseverance, I finally won and in March of 1997, I got approval from the insurance company.

And on April 22nd, I had my first cochlear implant mapping. That first hookup was the first time I had heard sound in years. Suddenly, the world became a very loud place for me. I didn't anticipate that. Initially, I had a real low tolerance of sound. It had been in 23 years since I had heard anything. The process of hookup requires that the audiologist work with the patient to design a “map”. Mapping establishes the threshold, ceiling, and median of sounds that are comfortable to the implantee.  Progressively over time, the mapping is adjusted to increase the amount of sound permitted to enter the implant. I went through mapping at day 1, day 2, then at one, two, three, and four weeks, six weeks, two months, four months, six months, and one year.

It was amazing to realize how many everyday sounds I had forgotten. It was a very amazing feeling to begin to recognize the sounds again. And even now, I hear a new sound everyday.

I did forget to tell you that there's a great deal of blindness in my family. My family has a history of macular degeneration. My father, grandfather, great-grandmother, and others further back in my family all have or had macular degeneration. When I became deaf, I really became detached from my father. We lost all of the good, everyday communication. He learned a little fingerspelling and some signs, but we really didn't have the same level of communication that we had before.

After I went off to college, learned sign language and came back home, communication among my family and me seemed to get even got worse. I am a very good lip reader, but some people are just nearly impossible to lipread. After I got the cochlear implant, I regained a stronger relationship with my family again. In fact, I live with my father now. And over the last few years, we have regained that relationship. If I hadn't gotten the cochlear implant, we would not have been able to do it. So that was a good benefit of implantation.

How many of you have worked with a person who has had a successful implant? Good. Okay. There are some pictures in your handout that show the individual components of the cochlear implant. I really wanted you to see what it looks like so if you turn to page 4. You see the internal components of the cochlear implant and you can see the two arrays on it? They are called the electrode arrays. I did put photos of the surgery in my handouts for you. We can still look at them in black and white here in our handouts.

When you're ready to start the implant process, your head is shaved. Some doctors take off a lot of hair. Some shave only a small area. I threatened my doctor not to shave a lot of my hair. I had hair halfway down my back at that time and I wanted him to leave as much as possible intact. The doctors do shave about a two-inch square on the side of your head. With men they tend to shave everything off. You know, they could end up with a half bald head. So anyway they're going to shave the head and cut through the mastoid bone. The doctors drill out a part of the mastoid bone in order to a) make room for the implant to be snuggled in the skull, and b) insert the two electrode arrays into the cochlea.

I want you to see the processor for my Nucleus 24M implant. I have the Nucleus 24M, manufactured by Cochlear Corporation. This is the third generation of implants. This is the processor. Transmitter. A receiver. Underneath this hook is a microphone. In the middle, right here in the middle of this transmitter is a magnet. Remember that picture I just showed you page 4 has an internal electrode array. If you notice on the receiver, in the middle, there is a round thing. That's also a magnet. So these connect. That's how it stays on.

The Nucleus 24M is the first cochlear implant to come out in BTE (behind the ear) format. What's really nice about the larger processor is it can handle any of three programs I have. SPEAK, ACE and CIS.  These are coding strategies that the processors use to manage sound that are transmitted to my brain. The little one, the BTE can't handle ACE yet. In two months (Summer 2001) they're going to release a new BTE that can handle ACE. I really appreciate comfort of BTE when I’m wearing a dress. Or in a hotel room, when I wake up, I can put it on like a person puts their eyeglasses on when they first awaken.

 If I'm using the phone and the BTE, I'm not direct connected, don't have the patch cord.  If I am on the larger processor, I plug the patch cord in the processor and in to my phone. This creates a direct connection so the sound goes straight to my implant without going through the microphone on my ear. What's really nice is the lapel microphone. If I'm in a car with a friend, driving somewhere, I can plug in the microphone to my larger processor, place the microphone on my friend’s lapel, and I can hear them talk. This cuts down the amount of sound I hear from the engine.

If you leave this workshop understand one thing, please let it be that cochlear implants do not make people hearing.  I am not hearing. There are people who get cochlear implants and begin to function much differently and people will say, “see, s/he's not deaf anymore”. That is a very annoying thing to say to someone. I function as a hard of hearing person when I have my implant on. Remember, however, that I heard language for 14 years. That made it much easier for me to learn how to use my cochlear implant.

I often use the phone without any kind of special cords or connections. I can only speak to people on the other end who have a lot of patience. Sometimes I have to ask someone to spell out a word, or I might ask just very simple closed questions, yes or no questions. The other night I was talking to John about how he calls home. He will ask closed questions of his wife, but sometimes she can't get a simple answer.

I think after 23 years of being deaf, and working in the field of Deafness for 20 years, I am greatly a part of the deaf world. I have many hearing friends and deaf friends. You can see that I function like a hard of hearing person with an implanted. I can accept that, but I am deaf.  I know we're talking about semantics here, but it's also an issue of identity. The other day in the presentation about Native Americans, we talked a lot about identity. This is a similar issue here. Throughout a number of the other presentations I have heard this year, people have talked about what deafness is. Who do you identify as, as a deaf person, as a late-deafened person, as a hard of hearing person, as a cochlear implant user. I've never heard that before. A cochlear implant user? Are we talking about something new here? Is this a new identity, sub-culture of the larger subculture of Deafness? I identify myself as deaf. Before the surgery, I identified myself as deaf. I didn't say I can hear this, I can't hear that.

What I hear now though has become an issue for me. At one time being a deaf person, those issues were very clear. They were very black and white and it's no longer like that. They're no longer yes or no answers for me. I can hear some things. I can't hear other things. I am deaf. But I can hear things. It's an identity crisis for me. And it's something that started two years ago. I was asked whether I was deaf or hard of hearing or hearing or what. And I want to be called Sharaine. Please, call me by my name. [ Applause ] That’s who I am. I know I'm different. I don't need a daily reminder that I'm different.

How many people here have read about a controversy surrounding cochlear implants? Can I see your hands? Lots of you.  Good. Let’s look at page 9. If you're like me and have bifocals, I apologize. The print is small.  There's a big controversy going on in deafness, even on the Internet. It is a hot argument. At times the argument becomes truly hateful in some ways. In other ways, it is an issue of pride and that's okay.

One of the things that happened was the doctors didn't start talking to members of the Deaf Community about cochlear implants. Later, word was spread in the deaf community that doctors were in this just for the money. Before long, the story was stretched to include someone’s fear that cochlear implants were going to destroy the deaf community, foreboding that this and that was going to happen. Some people talked about it in terms of doctors fixing deaf people. I have to tell you, that's not at all my experience. Mayo clinic has posters that they got from the Minnesota State Academy for the Deaf that were made by students against implantation. I was very surprised to see these posters and asked my audiologist why she had them.  Ann replied that they were very special to her; that they help her as a means of showing patients and their families how this was going to read in the community. It was shocking for me to look at some of these posters. My audiologist told me she felt responsible, believed it is her responsibility to inform her patients about the controversy prior to implantation. I work with deaf people and I know the controversy. But it was funny to me to see those posters in the clinic.

When I make presentations across the nation, I see people that haven't seen me in a while and they run in to me and we talk.  Sometimes they spot my implant or notice my voice has changed. They know I'm deaf. Yet some people I've met for the first time assume I'm hearing. So when I come to a presentation like this, I'm concerned that people are going to leave believing that I think implantation is the answer for everybody and that is not true. I don't believe it's the answer for everybody. People who knew me prior to the surgery and who aren't involved with deafness see me now and have this idea that cochlear implantation is going to solve deafness, going to resolve everyone’s deafness.

I always want to deal with the controversy whenever I do a presentation like this talking about the pros and the cons of cochlear implantation. There are definite negatives to this. For one thing, I told you the fight I had with the insurance. I won it.  In this entire process, there is this huge animal called an insurance company. And company is an important word. They're a company. They look at numbers. They look at the level of coverage and a string of numbers. Insurance companies always watch the bottom line.  One must be strong and persistent to see their coverage granted for cochlear implantation.

Dealing with the field of deafness is another problem. Just having the strength or being with crazy enough to deal with the deaf community is another issue. With all respect to the interpreters in the room, I do need to say that the people who are my worst critics are interpreters. That was a shock to me. In 1998, PEPNet had a conference in Florida. Each PEPNet center brought in teams of interpreters from their region, really the very top interpreters in the field. One interpreter asked another interpreter once he had seen me, “what's her story?” He didn't realize I had an implant. The other interpreter replied, “Oh, she's got an implant.”  I could see by the look on the first interpreter’s face that his opinion of me completely changed. He was like, “oh, one of them! Oh, she's stupid. She's not part of the deaf world.”  That's a common interpreter attitude. That's what I've learned. I have experienced the same thing with interpreters in St. Paul. Some interpreters are supportive, while others definitely are not. Some are smart enough to keep their mouth shut, others are not. It's hard.

As far as deaf people go, it's hard to predict who is going to be supportive. There are some people who I thought would be supportive and were not and some I thought would be opposed and are very much supportive. I gave up trying to predict who would be in which corner. It's my body, it's my life.

As VR counselors, you're going to see more and more clients with cochlear implants. Annette Reichman, my friend from the Department of Education, spoke during lunch yesterday. She talked about 90% of the deaf babies are getting implants. I knew it was high, but I couldn't imagine that high. I thought it was in the 30% range. Those babies are going to be your clients some day. And how you respond to them is going to be critical. You need to respect those decisions.

Now, these are kids. I understand the issue that these are children, they didn't have the opportunity to make a decision about whether they would be implanted or not, and that's part of the whole controversy that's going on. If I had more time I would talk about it. The reality is, however, these children will be your clients and you need to respect them.

You need to get them interpreters, note takers, assistive listening devices. Cheryl Davis, the queen of assistive listening devices, is here. She knows so much about ALDs. She came to Omaha to give a presentation and she passed around some assistive listening devices. When I tried a few of them out, I was amazed at how they could assist me with my cochlear implant.

Also, remember, cochlear implant users are deaf. You need to continue to use sign language with those future clients if they know sign language.
People ask me all the time, “oh, do you still need sign language interpreters?” I need interpreters for large gatherings and even some smaller ones. But if you do sign, I'm going to for sure understand everything you say. And you will have similar experience with your clients out there.

There's another important point about this. That's the issue about when we turn our cochlear implants on or off. If you run into me in the bathroom, I'm off. It's a habit for me now. The minute I touch that bathroom door, I turn my cochlear implant off. Whether out in public or at home. Why, you ask? Because the very first time I heard the toilet flush, I was totally startled and horrified to hear how loud the toilet flush is. When water is running fast, loud trucks pass me by, or the wind blows through my processor, I will turn my implant off.  If sound is pleasant, such as voices, music and wonderful birds chirping, I will have my implant on.

Question from the audience: Many people don't understand the difference between hearing and comprehension. Some people can hear and some people can understand. Talking about using the implant. So the implant is going to increase your hearing, but does it also increase your understanding? In your case specifically?

>>Sharaine:  For me, I hear nothing without it. So obviously, it increases my hearing but it also increases my understanding. Lisa, do you want to come up and chat a little bit about yours? This is Lisa. Do you know her?

>> Lisa: I do understand where you're coming from. I think you're talking about the quality of sound that we get. For example, now, Sharaine was deaf from the time she was 14. But I became deaf at 18 months old so I am prelingually deaf. Sharaine is post-lingually deaf. And you know that the language years from birth to about age five. Right? She already had developed natural English and that was already part of her language center of the brain. That's not the case for me. You'll often see many post-lingually deaf people with cochlear implants. You'll also see a lot of kids, young kids with cochlear implants. And they're beginning their speech training and their audiological training and practice very early. That was not my case.

>>Sharaine:  Now I have 24 channels. Lisa, you told me you started with a single channel and then got a Nucleus 24.  Is the quality of sound better?

>>Lisa: Thank you for adding that. I got my first in 1985 and my first cochlear implant only had one channel through which sound came. So I was getting one electric impulse. Today I have 24 channels. And that was a shocker. I have 19 electrodes activated.  The sound is better for me than the single channel device.

>>Sharaine:  Each electrode focuses on sound pitches. The frequencies are different. In the past, we had only sound at one frequency and now we have sound at more frequencies.

>>Question: A person who's born hearing then becomes, let's say, deaf at the age of two and begins to use a hearing aid and uses a hearing aid from then on. Now, you became deaf at 11 months. Right? Did you use a hearing aid right away and then from then on? The traditional type of hearing aid.

>> Lisa: I used a regular hearing aid when I was very young but I was profoundly deaf and had no benefit from it.

>>Sharaine:  Any other questions?

>> Question: I have some questions for Lisa. We've known each other, I don't know, for a while. [ laughter ] Anyway, we've known each other for a while. You said you were implanted in '86, was it? 1985, okay. You never told me. Is this something you hid because you thought I was going to judge you? What made you decide to be implanted?

>> Lisa: I was 17 at the time. I was in high school when I got my first implant. And I hadn't even learned sign language at that time. I was growing up in an oral program, an oral environment. It was actually my parents' strong influence that led me to the decision. Then when I was in college, I started to recognize the stigma attached to it and at that point, yeah, I hid it. I told people whom I trusted, but most of the time I didn't tell anyone within the deaf community because of the attitude and the responses I was encountering and the politics that was going on at the time.

In the '90s, we wanted to, it was at that time my insurance was going to change. At that point they offered me a second implant which I was very resistant to because at that point it been in the deaf community, had learned sign language, had some skill at that, had developed a deaf identity. I felt like I didn't want another implant. I even had the single channel device removed. Then last year, I decided it was time for a second one because the technology was so much better. And I had a little more confidence. I did some more research on my own and wanted to communicate with my family. I am very happy with it … and I'm out, too. [ laughter ] [ applause ]

>>Sharaine:  I think we're going to start a support group! It's hard! I have to tell you, yesterday, someone saw me with my hair back and was afraid to ask if I had an implant.

>> From the audience: No, no, no. What happened was, I saw the behind the ear on your ear, but I didn't see an ear mold and I wondered what was up with that.

>>Sharaine:  Oh, I see. Right. Terry?

>> Question: I'm just curious. Surgery to change for the new model, is that as intense as the original surgery? Is it easy?

>> Lisa: Oh, it's very different. Wow. My first surgery was August 22nd, 1985, a week before I started Western Oregon University. I had the surgery and slept through the night. When I woke up, I was black and blue. The entire side of my head, into my shoulder and my neck was stiff. I couldn't move my head or shoulder at all. And that lasted for about three days. The second one was trivial by comparison. I felt completely recovered about two hours after the surgery. There was no pain. I went right home. I just had a little soreness along the jaw.

>>Sharaine:  Let's compare my experience. We have the same implant. Different doctors. Not a big point. The point is that people react differently. My experience was like Lisa’s first experience. When I woke up in recovery, the whole side of my face was swollen. My eye was shut and black and blue. The person driving me home the next day wouldn't take me unless I wrapped my head with a scarf because the guy was afraid people would accuse him of beating me. A couple of days later, I had the allergic reaction. The right side of my face swelled up terribly. I looked awful. It was dreadful. Recovery for me took six weeks. I couldn't function normally for three weeks at all. And then once I got back to work, it took me another three weeks until I felt like my body was there. I had problems with the anesthesia. It is a traumatic thing for your body to go through. So you see, I know someone who got a clarion two or three years ago and he experienced the surgery the way Lisa did. It was nothing.

That’s all we have time for now.  Thank you for attending this session.  Please write me if you have questions or comments: Sharaine.Rawlinson@csun.edu.