For CIHear

December 28, 2005
My name is Denise Portis and I am a late-deafened adult. Prior to 1995, I had never heard of that phrase before, nor understood what “late-deafened” meant. Although I had little hearing in my left ear due to a car accident at 6 years old, because I had perfect hearing in my right ear I had little trouble coping.

Having grown up with typical hearing, I thought like many people do – one either has normal hearing, or is culturally Deaf and uses sign language. I thought hearing aids were for aging grandparents! I also thought that hearing aids “fixed” their hearing.

When my children were born in 1990 and 1991, I decided to stay at home for the first few years. Like many stay-at-home moms, the telephone became my lifeline in order to talk with friends, family, or my husband. I noticed that as time went on, and a life of diapers and bottles changed to training pants and pre-school, that I was having more and more difficulty hearing on the telephone. At first I thought people were mumbling more, or that they were trying to talk to me in a noisy environment. I remember thinking “it must be the phone”, and talked my husband into getting a newer and more expensive one. I was concerned when the new phone didn’t “fix” the problem, and that I had to really sit and concentrate in order to hear on it.

By 1995, my husband finally talked me into getting my hearing checked. That first audiogram both enlightened us and frightened us. I did indeed have a hearing loss and the audiologist explained how even a mild hearing loss can affect a person’s life. She explained the different types of sounds one would find had “gone missing” with a mild to moderate loss. After looking at my audiogram, it suddenly made so much sense that I was having trouble with the telephone and in noisy environments. The audiologist did not recommend a hearing aid at the time, but did ask me to see my doctor to rule out infection or fluid build up. Everything checked out fine with my doctor, so I promised my audiologist to follow up on a yearly basis.

Over the next couple of years, I saw a dramatic difference in each audiogram. By the year 1999, the concern on my audiologist’s face finally mirrored what I was just learning to come to grips with myself. My hearing loss was progressive, and each year the changes in my hearing were more dramatic. For the first time I learned that I have what is called a sensorineural hearing loss, and that like most people with this loss I would never know the cause. My audiologist recommended hearing aids, but I was horrified at the thought! I had never met anyone my age with hearing aids. I was so relieved that we had two pre-teens in orthodontia, and could not afford hearing aids. Before I left my audi’s office that day, she asked me to think about two things. She asked me to come back in 6 months instead of a year, and asked me if I would wear a hearing aid if she could fit me with a “refurbished” one that would be much less expensive.

Over the next few months my life dramatically changed. Dropping out of activities in my community, church and children’s school were minor in comparison to having more trouble talking to my own family at home. After only two months had gone by, I went to see my audiologist again. She showed me some hearing aids that I could wear that my hair would easily cover. She asked that I wear one for a week, and then come back to see her. On my way out of her office, I saw a flier at the check out desk advertising a support group meeting for hard-of-hearing people. I was amazed to see that the leader was someone that I knew from my church. When I got home I contacted Susan Wilson, who led a support group called Self-Help for Hard of Hearing People.

I learned so much from these meetings! It was so nice to simply learn that I was one of nearly 28 million Americans with hearing loss. I was not alone! However, all that I learned about hearing loss and coping skills did not put a halt on the progressive hearing loss that I was experiencing.

By the time we moved to the DC area in 2002, I had two hearing aids. As my hearing loss was now in the moderate to severe range, even with aids I missed a great deal of a conversation. I was forced to learn to speech read and to learn to put what I was hearing into context. Even then communication was not perfect! One day I walked out of a store and towards my car. A group of teenage boys were walking towards me and one of them said, “SWEEEET heart!” I walked on past thinking, “Wow teens are certainly forward now-a-days!” Looking back behind me, however, I saw that they were walking around a red Corvette. It hit me that they had said, “Sweet CAR!” Imagine only hearing parts of words and about 30% of a sentence! Communication can be very difficult under circumstances like that. Even at home it was impossible to really understand what my family were saying unless I stopped everything and concentrated on what was being said. I couldn’t wash vegetables in the sink while talking to my daughter. I couldn’t go shoot hoops with my son and talk to him at the same time. My husband had to be bedside lamps for the first time so that we could talk after going to bed.

By the time I saw my new audiologist in August of 2003, I had reached a very low point in my life. My hearing loss had begun to affect every area of my life. Even using the t-coil switch on my hearing aids, I could only talk to a few people on the telephone. I couldn’t go to a movie with my family and hear very much of it. I was unable to hear in church. I couldn’t go get ice cream with friends and talk about how exasperating teenagers were. I couldn’t listen to the radio, or CD player. The doorbell, phone ringing and dryer buzzing were all sounds that I read about – but could no longer even place in my memory of how they sounded. I couldn’t take a walk with my family and hear the things they were hearing. It always amazed me that they could hear distant sounds like airplanes, a creek through the trees or birds around us. Some of these sounds had been gone for so long to me, that they were only very vague memories and not at all tangible to me anymore.

When my son developed asthma, I was unable to monitor the way his breathing sounded, in order to relay this information to the doctor. How could I hear how his breathing sounded before and after treatment, when I could not hear him laugh out loud, or hear his voice as he talked? Hearing how he was breathing was an impossible task. My kids learned to communicate many things FOR me. My kids grew up with my hearing loss. They learned early on to touch my shoulder first to get my attention, and to make sure I was facing them before they began to speak. It was not always easy, but I began learning to be pro-active about my hearing loss.

By the summer of 2004, my audiologist was very concerned at the amount of hearing loss that had transpired over only 6 months. She sent me to an ENT in order to rule out an acoustic neuroma. Everything medically checked out fine again, and yet my hearing continued to worsen. For the first time I sat my family down and we discussed my eventually going deaf and what that would mean. My kids seemed unconcerned as they did not identify “mom” with hearing loss. My daughter said, “You are losing your hearing, you are not losing YOU”. This was little consolation, however, as I knew that the hearing world I was born into and grew up in was slipping away from me. For the first time I let my husband really talk to me about what he was learning about cochlear implants. He had met numerous CI recipients since coming to DC, and he felt sure this same miracle would work for me. At first I resisted, as I had conditioned myself to adjust and re-adjust each time I lost more of my hearing.

However, after meeting people with CI’s and asking questions about their own journey “out of silence”, I began investigating CI’s in earnest. By August of 2004, I had an appointment for a cochlear implant evaluation at Johns Hopkins in Baltimore. I was told that I qualified for an implant on either side. Things began to happen fairly quickly, and we became experts on the three available implants. After choosing one, my surgery date was scheduled for April 6th, 2005. During those months of waiting, the internet allowed me to contact scores of people with implants. Through email and cochlear implant listserves I educated myself and learned what to expect on my hook up day. So many told me, “Denise, keep your expectations low so you won’t be disappointed. It can take work to understand and hear again”.

I am including a link at the end that includes a small part of my activation video. If you wish to view it you will need Windows Media player in order to see it. On it you can see that one second before my audiologist spoke to me, I was already hearing. My face says it all! With the flip of a switch, I could hear. When I answered her questions, I was surprised to hear my own voice. Within 20 minutes of activation I was hearing my son’s voice that I had not heard since he was three years old. Later while walking around the Inner Harbor in Baltimore, my family had to keep walking back to grab my elbows in order to escort me through intersections. The things I could already hear around me had me stopping dead in my tracks, with my mouth ajar. On one occasion my husband lost track of me in the crowd. My son and I had found a duck. I was so astounded at the duck quacking, that I sat right down on the curb near it and simply stared.

I am now 6 months post-activation and I can change programs like a pro. I know what works best in different environments. I can change the batteries in the dark – I know this because my batteries went dead in the movie theatre when my family and I went to “The Fantastic Four”, a movie I was saw AND heard. I have learned that our microwave beeps when you punch in the cooking time, and that my coffee maker gurgles and burps when making coffee. The sound of my dog’s pant is worth the doggie breath, and if I leave my implant in while reading in bed – I’ve discovered my husband DOES still snore. Birds make different kinds of sounds, and each of my cats have their own Meow! On June the 28th I ordered Chinese take-out on the phone – by myself – and without captions. The people I go to church with actually LAUGH at my pastor’s jokes, and the car dings if I don’t have my seat belt fastened. The environmental and nature sounds I hear do not compare with the wonder of understanding voices so much better. I can talk to my daughter from the kitchen when she is setting the table for supper in the dining room. I can talk to my husband when he’s driving, even if I’m in the back seat. Conversation is something I look forward to now, instead of dreading. People who know me well have told me that my speech has changed, and that I seem more relaxed. My hearing is not perfect, but my implant is allowing me to hear things that I have not heard in over a decade. I’ve become an expert at making adjustments both physically and emotionally as my hearing deteriorated. The adjustments I have made in the last 6 months however, have been in what I am now hearing again.

I have met many people both face-to-face, and through the internet who have also experienced the miracle of the cochlear implant. I “listen” in awe to each and every story, and my heart thrills anew with each testimonial. CI Hear has been a key place for me even before my own surgery. I have found answers here, and a safe place to ask questions. As my questions are often corny ones, I needed a place to ask them! CI Hear has also given me a very important place to belong. Every time a new person posts looking for answers, or an “ol-timer” gives an update I feel like I’m hearing from family. My thanks to Alice Adams and the numerous others who have made CI Hear a place to learn and grow.

Sincerely,
Denise Portis
Hearing Loss Association of Frederick County
(formerly Frederick County SHHH)
Frederick, MD
Left CI implant: 4/6/05
Activation date: 5/13/05

http://www.lightkeepers.net/terry/ci.zip

SHHH Convention in Post Activation June 2005
Washington DC, July 2005

Advertisements

Christmas Letter 2005

2005 Christmas Letter
Saturday, December 10, 2005
2:41 PM

When I look back over the last year the word that I think about is opportunities.” I hear some people complain that one day is just like the next. They just try to make it through to the next vacation, or even retirement down the road. I am thankful that God has given me a life where each day is unique; each week is filled with so many opportunities.
The quality of life our family enjoys in Maryland is so wonderful. Growing
up in the South, I never thought too much about Maryland. Our small suburb of Washington is just large enough to have a nice library, shopping and restaurants without feeling too crowded.

Besides being able to go into Washington, we also have been able to get to know West Virginia and Pennsylvania. In West Virginia we have grown fond of Harper’s Ferry, and in Pennsylvania we have come to love Hershey and the beautiful areas around Amish country in Lancaster County.

As executive director of the Hearing Loss Association of America, I have many opportunities to get to know people from all over the country. Whether I have been in Los Angeles or Philadelphia this year, I have been able to meet new friends.

Denise’s new hearing through her cochlear implant has been a miracle in 2005. Of course she will never have normal hearing again, but this technology allows her to hear voices and things we take for granted like water running or wind chimes.

I finally got the entire family to join me at Frederick Athletic Club. We are all members now and enjoy basketball, weights, and the many exercise machines. Now that I have turned 40 it is important for me not to let atrophy set in too quickly!

I have also enjoyed the opportunity to teach a psychology class for Chieftain Institute again this year. The students have shown so much interest and been a pleasure to teach.

I hope everyone who reads this has a Merry Christmas and a Happy New year!

Terry

It’s that time of year again! Time to nag the family to participate in the Christmas letter that we send out! Actually, I rarely have to twist arms. Everyone in our family seems to enjoy writing.

I’m teaching three classes this year at Chieftain Institute. It’s amazing how much more work three classes is than two. However, I love teaching and it keeps me busy in a good way. I also continue to homeschool our kids, and they continue to excel in their studies and tests each year. Chieftain Institute has been a blessing, as the kids can take foreign language classes there, as well as other classes that I am not as comfortable attempting to teach. This also gives them the opportunity to be under other wonderful teachers, and also to be with other students in a classroom setting. We do school from 7:00 AM until about 4:30 or 5:00 PM each day. That may seem like a long day, but our kids don’t have homework. Smile! They are involved in a great number of community projects and volunteer a great deal as well.

We still have a great number of pets. I am not as keenly aware of it as I use to be since I do not take care of any of them except for my dog, Max. The kid’s are very self-sufficient when it comes to taking care of their “critters”, and even pay for their food, vet bills, etc., or do extra chores to earn towards this extra expense. The kids still foster “pocket pets” for Small Angels, a non-profit in Frederick that helps to find homes for unwanted guinea pigs, hamsters, gerbils, rats, chinchillas, etc. For some reason, our family has become one of the “rat expert” families. This is not necessarily a title I’m really keen about, but the kids really enjoy it. We also started 4-H this year so they are working in all this extra care for their pets in this program as well.

I was implanted with a cochlear implant on April 6th of this year, and was activated on May 13th. We video taped everything from the point of us leaving for the hospital, all the way up through the activation. Even though it was ME, I still get goose bumps watching it, and cannot really get over the miracle of not hearing one moment, and hearing so well the next. The family really teases me good naturedly about the stunned look on my face on the video when I am switched “on” in my doctor’s office. I “heard” seconds before she actually said, “Denise, can you hear me?” Who would have thought air conditioners, doors slamming in the distance, footsteps outside in the hall, my son wiggling in his chair, etc., could all make this incredible combination of sound! I journal a great deal, and write about all the different things I am hearing. Hearing, is certainly not something I take for granted. My hearing is not perfect, but I am hearing so much more than I ever thought that I would. To say this year has been an unforgettable one, is an understatement.

Terry continues to work as Executive Director of the Hearing Loss Association (the name changed in November of this year). He is gone for 12 hours a day (part of that commute time), but he comes home a happy kind of tired. He expends a great deal of energy in his job, but it’s because he loves people with hearing loss. When he is home he’s a great dad, and attentive husband, but when he’s at work he certainly works tirelessly towards making a difference. We have had a few opportunities to speak at some meetings together this year, and I have certainly enjoyed traveling with him. I’m a bit amazed at the different opportunities my deafness has afforded me to speak to others about hearing loss. I was very blessed to be able to speak at the Congressional Hearing Health Caucus in July. The Congressional staffers also asked to see part of my activation video, and I was surprised to see tears on many faces. My hearing loss has become such a part of me, that I had forgotten those with normal hearing are stunned by evidence of the miracle of “hearing again”, and what hearing means to an individual. I also love speaking at local chapters of the Hearing Loss Association, and have met so many wonderful people.

My dad had a heart attack on October 13th of this year. He actually died at the activity center of the retirement community my parents live at in Florida. A retired EMT and some retired nurses brought him back with a defibulator that the center had just purchased. He had 4-way bi-pass surgery on October 17th. I was able to go and spend a couple of weeks at my parents to help out and also get in the way. I was so glad to be able to go. Dad is doing great now, and mom is breathing more normally now that the immediate danger is past. He is certainly a walking miracle. I was able to see my two brothers for a few days while they were there for my dad’s surgery. I haven’t seen them in awhile, so that was a big thrill for me.

I have continued corresponding and posting online in different hearing loss forums. It’s amazing what the internet has done for those with hearing loss, by providing a community through email and message boards. It’s so nice to be able to talk to others who have experienced hearing loss. I have “met” so many wonderful people and have been encouraged by so many individuals. I also have been able to correspond with others who are new to hearing loss. Statistics show that the number of Americans with hearing loss will surge in the next decade. I expect the internet to continue being the place many go to find help. If you have internet access, you will have to check out http://www.hearingloss.org (the Hearing Loss Association’s website).

Our own family has a website as well. We try to keep it updated. http://www.lightkeepers.net

This Christmas has certainly been exciting, as I’m hearing things I haven’t in over a decade. The meaning of Christmas hasn’t changed at all though! I am forever grateful for Christ’s birth, and I certainly try to remember that HE is the reason for this season. May God bless you and yours,
Denise

Merry Christmas everyone! This is Kyersten and my mom asked me to include a part in the Christmas letter. Being the procrastinator that I am, I waited until the day of mom’s “deadline” to do it. I am, unfortunately, quite a procrastinator, which gets me into trouble sometimes. I even have a shirt that says, “I’ll stop procrastinating – tomorrow” or something like that. Ha, not only am I a procrastinator, I am also random. I’m pretty sure mom didn’t want me to spend the whole time talking about procrastinating.

The most exciting news of this year is that my mom received a cochlear implant! We were all so excited. She went to John’s Hopkins for the surgery. She is hearing a lot better now! And the really cool thing is that you can stick magnetic stuff to her head, but you are not supposed to.

This year in school, I am in 10th grade. I’ll hopefully be starting Driver’s Ed soon! I am taking three classes at Chieftain this year: Sign Language 3 (taught by my mom), Spanish 2 (taught by Mrs. Richardson), and Psychology (taught by my dad). It is funny to have two of my parents as my teachers because their teaching styles are so different. My favorite subject in school this year other than my Chieftain classes is probably Total Language Plus. You read a book and from that book you get spelling and vocabulary words and stuff. My least favorite is still math. This year I am doing Algebra 2.

This summer the SHHH convention (by the way, Self Help for the Hard of Hearing has recently been changed to the Hearing Loss Association) was in Washington D.C. We didn’t have very far to travel! It was a very nice hotel and we had fun.

Our family still has a lot of pets. Just by myself, I own one dog, two cats, three rats, and one fish. My dog, Ebony, is still alive (much to our vet’s astonishment) and very happy. My two cats, Mandie and Kiki, are as fat and quirky as ever. My three rats are Mercy (a very old, very fat rat), Zoe (a young curious rat), and Milky Way (a very mean rat, but I love him anyway!) My fish is a Black Fantail Goldfish and loves to eat.

We have had a very nice year and I hope you all have a wonderful Christmas and New Year! I would love to hear from all of you all year ‘round! Email me at sign4godteen@lightkeepers.net.
Sincerely,
Kyersten

Hey Guys! Mom wanted me to tell you about my “interesting” year. Right now, I am going to something called Chieftain Institute. Chieftain Institute is a place where homeschoolers can go to earn high school credit by taking classes taught by professionals on a certain subject. In CI, I am taking Debate Club, Debate Class, and Sign Language 1. Sign Language 1 is taught by Denise Portis (I think she is the BEST teacher) and we learn about how to communicate to deaf and hard of hearing people by making certain gestures with our hands. (That’s why it’s called “Sign” Language) In this class we learn three different songs, make a five-minute presentation in front of the whole class (I need to start working on it), and the whole class has to chose one of the songs to sign in front of everybody at CI at the end of the year. Debate Class is taught by Mrs. Smith, and is where beginning debaters learn how to, well… debate. Debate Club is where we have practice rounds, help each other with their cases, and go to tournaments. So far I have lost one round and won one round. The one round I lost I was trying to prove that health courts would fix the system, and the one round I won I was trying to disprove that health courts would fix the system. (Ironic huh?)

Well, Jr. High Youth group is pretty much the same. Jr. High Youth Group is a program on Sunday night where we play a messy game, have someone give their testimony, and have a lesson from our devotions in the past week. Jr. High gives out a magazine every month called “Youth Walk” that has daily devotionals we are suppose to do each day. Then, the lesson in the following week is on the devotionals that we just did. The messy game usually involves pickles, onions, chocolate dipped pretzels, or something else like that, but just recently we didn’t have a “messy game.” (Apparently, Mr. Cook, our game leader, is starting to run low on ideas.) We all got in a big circle and played “monkey in the middle,” or, as I call it, EXTREME monkey in the middle. Our most athletic person (I prefer not to call him by name because this letter is probably going to Matthew Reeping) tends to stay in the middle the longest. (Another ironic thing!) Also, I would like to mention my youth group leaders who made this all possible. Mrs. Guy, Mr. Neff, Mr. Cook, Ms. Becky, and Mrs. Sphere. There was someone else I was supposed to mention that I forgot last year but I can’t think of his name. I know he gave me a hard time about it. I know he is the one who tells really bad jokes but I still can’t think of his name. I guess I will have to move on.

Also this year in youth group, we went on a weekend retreat. The subject was called “Maximum Exposure” and we were taught with three different lessons, “choose your lighting, choose your focus, and change your filter.” Each of these lessons had to do with a camera and taught us how to do different things in our daily lives. Other than that, it was a pretty crazy weekend. From the bathroom toilets being clogged (which everyone thought was me) and a teddy bear being held ransom. (Which everyone thought was me again. I really had nothing to do with these things!)
Recently, my Mom got a cochlear implant. I won’t go into detail since my Mom will probably go into the little “technical” details in her part of the letter. A cochlear implant is a device that lets my mom hear better than she ever would have with a hearing aid and was a big thing for my Mom to have the privilege to get. Her doctor at Johns Hopkins was one of the best doctors she could have gotten for the surgery. Anyway, it is great, and kind of funny, about the new things my Mom can hear. (And maybe doesn’t want to hear)

Well, that is my part of the letter so have a Merry Christmas!
Chris