Don and I arrived for activation full of high hopes and tempered expectations. Earlier that morning I posted the following to my online CI support group as it summed up my feelings and beliefs about the journey ahead.

James, the audiologist, took us to his office and got me started right away explaining what was going to be happening.

I was hooked up to my new Cochlear N7 processor by James but he didn’t turn it on right away. He located the implanted magnet with the N7 magnet determining it was snug enough to stay put then fitted the processor over my ear.

Before activating my processor, James spent ten minutes testing the electrodes threaded during surgery through my cochlea. He went through a series of beeps to which I was to respond two, three or four depending on the number of beeps I heard. Some were faint making me wonder if I really heard them, others were loud and high-pitched causing me to jump out of my seat. This “test” reminded me of the hearing tests I’ve dreaded over the years.

After determining the electrodes were working perfectly, James switched on the processor and I was finally activated! And who’s voice should appear??? R2D2!!! But he wasn’t nearly as obnoxious as I was led to believe. James gradually turned the volume up until it was uncomfortable. Eventually he got me to a volume level I could comfortably live with. However, I’m supposed to increase the starting volume level (referred to as scan in audiology speak) three times by our next mapping (translation: appointment) on February 12th. I’ve already moved easily into the second level as of this writing.

Once I was at the right volume level James started pairing my new processor with my iPhone which is how I make adjustments. He then began pulling out accompanying tools needing explanations (and there are a lot!) such as batteries, TV streamer, mini-mics, etc. In chatting about these items I was reading James’s lips as I was getting sound from the CI while not wearing my right hearing aid and understanding beautifully. The words were robotic but not unpleasant sounding. At one point, I heard Don ask a question and heard every word though I wasn’t looking at him to read his lips! I excitedly cried out, “I heard that! I heard that!” And tears started rolling down my cheeks as I realized I had recognized speech without lip reading. I leaned over and kissed him as I was overcome with emotion. By the way, Don’s voice sounded like Darth Vader…deep and robotic. I loved it!!!

Truly I thought I was only going to hear squawks, squeaks and whistles, an all too common phenomenon by newly activated CI recipients, so you can imagine my pure elation at actually recognizing speech without lip reading. High hopes, tempered expectations!

On the drive home, Don and I played listening games the entire 40 minutes. I left my hearing aid out and turned my head to avoid lip reading while he spoke. We started with numbers. He would say ten numbers in a sequence such as 11-20. He had to repeat them a minimum of three times but I was able to repeat the sequence back to him. He even changed up the sequence to 10-20-30-etc. and I “heard” that one after two tries! Ironically, 5-10-15-20-etc. proved harder but I did eventually “hear” it.

We then moved our game into farm animals, African animals, and car makers. These were much harder as some I could identify immediately and others he had to tell me. Examples: elephant, no problem. Monkey, couldn’t hear it for the life of me. Cow, no problem. Pig sounded nothing like pig and I’m still not recognizing the porker!

Don wants me recognizing my name…it’s not happening yet. Sounds like Wilma to me so I suggested we change my name to Wilma which sounds like Wilma when he says it. Go figure!

I’ve been unwrapping more Christmas gifts as I discover new sounds I haven’t heard in years, if ever. Turning on/off light switches, removing/replacing the cap on my chapstick (it clicks!), snapping my fingers, Ruby (our dog) licking her paws, trees rustling in the breeze, the sound of Don’s shoes hitting the pavement while walking, programming the microwave…all simple sounds denied to me over the years.

The puzzle pieces are there waiting to be assembled and I look forward to it. I’m already over the moon happy with my CI!

Next: Activation Adventure, Part 2 (the not so good parts)

Nine days after Cochlear implant surgery I’m humbled and I mean truly humbled! What a journey and it’s not over yet. And I’m only referring to recovering from surgery. The information put out by the implant companies and on the Internet make it sound like you’re back at work in a week…okay…maybe two in some cases and life is good. My own surgeon had me convinced there’s not much to it. I’m laughing my way through my Pity Party for one! It’s been far worse than I could ever imagine. I blithely thought I’d sail through this…after all I’m healthy!

Where to start??? My pity party started a week ago when double vision set in. How could this happen? The operation involved my left EAR, not my eyes. I couldn’t watch TV, drive, see anything straight. Most importantly, my eyes are my ears…always have been, always will be as I must read lips to supplement my hearing. Since Don appeared double to me, I couldn’t get his lips to match whatever sounds were coming from his mouth. Panic set in!

I emailed the surgeon who suggested nystagmus (dancing eyes) causing the double vision and it would disappear in a couple of days. Nope…no such luck. I put it out on my online Cochlear implant support group (what would I do without my new friends???) but nobody had dealt with it. Finally, Don and I decided to see our local optometrist. If anyone could solve it, she could. We were able to get in this morning and sure enough she may have figured out what is going on. She believes the surgery may have caused trauma to my head (makes sense) worsening a preexisting condition I have where I need prisms to correct tired eyes. Over time she believes the eyes will return to normal. In the meantime, new corrective lenses have been ordered for the duration until my eyes correct themselves. 😅 In the meantime a patch over my left eye gives me single vision so I can participate in life somewhat. Still can’t drive, though.

Nausea and vertigo (lightheadedness really) have been my constant companions since surgery. Such fun! Vertigo where I felt like I was spinning only lasted the first two days. Don says I’ve been walking very well but I feel as though I’m wobbling from place to place. Like a toddler, I keep my feet wide apart as I move. Whatever…thus far I’ve not fallen. When walking outdoors I do use a walker as I’m not taking any chances. The simple act of walking is something I will never take for granted again.

Zofran has become my best friend. She’s a double edged sword though. She keeps nausea away but causes major sleepiness. That’s not all bad as naps are a wonderful luxury when recovering. But she also likes to bring everything to a screeching halt. Enter her wonderful companion…MiraLax. Together they’re quite a duo.

Last Wednesday surgical dressings were removed exposing a Frankenstein like serpentine scar snaking across a wide swath of shaved hair. Don took pictures but I was so grossed out I refuse to share them. The good news is I have just enough hair to partially cover it. My crowning glory such as it was has been tarnished! Thursday was better yet as I got to get in the shower and wash my hair. Oh for life’s simple pleasures!

The reality of my new hearing norm has set in big time and it’s frightening to me. I knew one hearing aid wasn’t going to cut it but it’s worse than I imagined. One would think one would have 50% of one’s former hearing but that’s not the case. My aids worked together binaurally to produce sound as nature meant our ears to do. Take away one aid and I’m reduced to 30-35% of my former very poor hearing. Trust me…it’s awful. Today working with the optometrist to figure out the double vision I was beyond frustrated and blinking back tears. She’s doing her best to work with me but I just couldn’t understand. Fortunately Don was a help interpreting but there were times when it could only be between me and the optometrist.

My new norm. TV is a huge struggle between the double vision and very little hearing. I discovered streaming TV onto my iPad allowed me to look down and closer avoiding the double vision. Yes, closed captioning is a life saver but not like it was before surgery with accompanying sound. Tears accompanied the watching of PBS’s “Victoria” as I remember how I heard it before with cc. This time just cc…very depressing to me. I am unable to hear on a phone but fortunately there’s texting/emails. And Don’s there to take or make calls for me. I knew I wouldn’t hear well but it’s shaken me much more than anticipated. My new temporary norm. Somehow I will survive because I’m a survivor but the road ahead will be fraught with challenges.

Tomorrow I’m resuming bridge as I must shake cabin fever and get out!

Next: activation! January 31st (hopefully) as the surgical site must heal completely. I am so looking forward to that day because then I can start the work of training my brain to hear electronically.

The diagram illustrates what happens during Cochlear implant surgery. An incision is made behind the ear where the magnet and receiver reside (#3). The surgeon then threads the electrode wires through the cochlea so it makes contact with the auditory nerve (#4).

Finally the long awaited day arrived: Monday, January 7th. I got the call on Friday letting me know my arrival time at the Surgery Center. I had requested the earliest appointment of the day but that was not to be. My arrival time was 11:00AM with surgery scheduled for approximately 12:30. At first I was unhappy about it but I ended up turning lemons into lemonade. Why? Don and I made Sunday night a mostly fun one.

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A huge rainstorm accompanied by high winds blew in late Sunday afternoon. The winds were so strong it blew over a tree next to our house. Originally we planned to go out to dinner but who wants to venture out on a wild, woolly night? It was pouring earlier that afternoon when we took a trip to a local market to make sure we had a well-stocked refrigerator/pantry. I needed soft foods so with surgery in mind we bought jello, pudding, mashed potatoes, saltine crackers, and Ensure…food we thought might not upset my stomach.

After putting away our groceries, we settled in to watch football playoffs but only got through the first game. Our Comcast went down so we had no internet, land line phone or TV services. It really made me aware of how much we are on our iPads. We’ve gotten so hooked into modern technology that we almost didn’t know what to do with ourselves. I decided to play my favorite songs loaded on my iPod and Don was able to miraculously pull up music from Hamilton. Admittedly I cried a few times realizing I’d never hear music non electronically again. My favorite music is mostly from the late 60s through the 80s. We ended up having so much fun singing our hearts out and rockin’ to the music. Time passed quickly and before we knew it it was past our bedtime.

What I realized about our Comcast being down is listening to music completely had me relaxed because we were laughing and singing (and I mean belting it out!). My voice is terrible but Don didn’t care nor did I! Remember Smelly Bonelli from my 8th grade music class when she told me to stop singing as I was off-key. That night I just didn’t care! Truthfully I used to sing to my iPod as I drove anywhere by myself. I also sang to my son when he was little and he didn’t care/know I didn’t have a good voice. In fact, he wanted me to sing every night when I put him to bed.

Don set his alarm (I haven’t been able to hear an alarm since the early 90s) for 2:30am so I could get up and eat an already prepared sandwich washing it down with a tall glass of cold water. I was not allowed to eat or drink after 3AM. Knowing myself, I knew I’d be starving as well as terribly thirsty by our 11:00 arrival time so it just made sense. The truly surprising thing was I actually returned to sleep easily!

Before I knew it, we were on our 35 minute trip to the surgery center arriving promptly on time. I actually arrived very calm with only a slightly anxious edge. The rest of the day was a blur. Obviously I got checked in and waited very little time for my name to be called. The usual protocol followed: hospital gown (so lovely aren’t they!), ID bracelets, intravenous line inserted (ouch…the first nurse couldn’t get blood flowing so she called in another nurse who had no trouble), meeting the anesthesiologist, and finally talking to the surgeon. By this time Don was sent to the waiting room and shortly after I was wheeled into the operating chamber. I remember very little after being transferred to the operating table. Next thing I knew I was being awakened to go home. Really, I thought??? I just wanted to sleep! I remember being helped to get dressed and vaguely wheeled out to our car. How I got into the car I have no idea. Next thing I know Don’s helping me out of our car at home into the house (not an easy task for him as there are two steps onto our porch) and into bed. The one thing I noticed in spite of my grogginess was I couldn’t walk unaided! Vertigo and nausea had set in!

Oh my! Tuesday morning when I awoke I tried swinging out of bed to head to the bathroom. Big mistake! I had needed the walker to get into the house the night before but completely forgot about it. Obviously I needed it again in the morning! The entire day I lurched around the house like a drunken sailor whenever I moved. My maiden name is Weaver so I decided I was returning to my youth as I was weaving my way around our house. Needless to say, Tuesday saw me recording the fewest number of steps EVER on my Fitbit.

I finally saw my appearance when weaving past the bathroom mirror. Oh my! Lovely!

Frankly I was disappointed! In my online Cochlear implant support group the pictures feature other recently implanted people wearing an ear “jock strap” and I wanted one (saw it as a great photo-op). Later I discovered the “jock straps” are tightly bound giving headaches to many wearers. Guess my surgeon decided to shuck those in favor of cotton gauze and sticky tape. As you can see, Don removed the left arm off my backup glasses so I could actually wear them without aggravating the incision site. True confession: I didn’t change into jammies upon arriving home as I hit the bed and was gone into LaLa Land! Besides who cares but me??? Surgery of any kind has a tendency to reduce us into not caring what one looks like!

However, I am curious about what my hair is going to look like after removing the bandages. How much was shaved off? Will I have enough to cover the incision site? I’ll find out tomorrow afternoon when I carefully remove the sticky tape and gauze. Apparently it’s open air from that point forward but I am supposed to clean it with hydrogen peroxide and apply Neosporin everyday until it’s completely healed. Activation of my CI doesn’t occur until the end of this month as the site needs to heal completely.

Until next time…

A friend recently asked me what took me so long to get a Cochlear implant. Good question. I mumbled something about about being too busy, places to go, people to see, things to do. Besides I could hear. After all this is my norm and I was happy with life as I knew it. Because I lost my hearing gradually over the years I adapted creating new norms along the way.

Truthfully I was in denial. I attended a CI seminar at the turn of the century sponsored by my hearing aid dealer. Nah…this isn’t for me. I was horrified at the thought of wearing one of those big, bulky processors hooked to a wire and magnet sticking on the side of my head. And the thought of surgery…no thanks. Besides I was working full time as a teacher and had a teenager at home. How could I possibly have time for it? Plus I still had lots of hearing. Even the CI rep told me I could get by for a few more years.

The last seven years of my 35 year teaching career I had a mic system installed in my classroom which operated on an infrared system. Four speakers were installed centered on the front, back, and side walls which magnified sound when the kids talked into a mic. My students sat in learning clubs of 5-6 desks grouped together angled facing forward towards the front of the classroom. I could see every child and each cluster had a mic. The kids loved it! They willingly took turns and occasionally hammed it up. I walked the classroom all day long heading closer to the students with softer voices so I could hear them better as well as read their lips. The downside…I went home exhausted every single day. I napped at least three days a week before dinner. But I made it work.

After retirement, I happily volunteered for our county living history program for third graders called Valley Days. I served as the schoolmarm in the one room school and thoroughly enjoyed it. Three years into volunteering it hit me one day…I couldn’t understand what the “pioneer” children were saying. Because every session brought a new class I never got to know the kids and their voices like I did when teaching full-time. I reluctantly turned in my schoolmarm dresses and stopped.

Being a Pink Lady at the local hospital also sounded worthwhile to me so I went through the training and became one. I ended up working the gift shop. Great…lots of fun until non native English speakers (there are many in my area) tried to buy merchandise while I was on duty. What a struggle! I felt so badly for them as I couldn’t understand what they were asking. I reluctantly turned in my pink coat and stopped.

I stopped going to the movies. The last movie I saw in a theater was The Help in 2011. I was able to “hear” and understand most of it because I had read the book just prior to seeing the movie. I stopped attending theater only going to musicals I knew forwards and backwards such as Mama Mia and The Sound of Music. I did see Hamilton in June, 1917 but I literally memorized the words by listening to the music while reading the lyrics over and over and over. I had also read the book.

During this post retirement period I learned to play bridge. A year and a half into learning the game I discovered duplicate (competitive) bridge. Finally…an activity where I didn’t need to hear well! Bidding boxes are used and talking is minimal once competition begins. Cards are preshuffled and loaded into boards. It’s truly a “quiet” game. It quickly became my favorite go to activity.

I also had places to go…Eastern Europe, the Balkans, the Mediterranean, Peru, Norway. The United States and Canada also lured. I didn’t have time for a CI.

I attended a second CI seminar about five years ago sponsored by my hearing aid dealer. This time the audiologist who owned the business told me I was clearly a candidate. More denial. As I mentioned in my first blog posting, I went in May, 2015 to see an ENT surgeon who did CIs but I just wasn’t ready to commit to the time needed to retrain my brain to hear electronically. I was happy with my life and still had much to do.

What changed? A friend asked me early 2018 if I would like to go on a trip with her in January of this year. I responded no knowing it was time to commit to a CI. Don and I went to England/Ireland in June and I struggled mightily to hear the entire trip. It was then I started telling people I was going to get a CI early 2019. Really I was trying to convince myself now’s the time. I got on the phone late August and made the necessary arrangements. A brain MRI (a mouse on an exercise wheel was discovered!), a VNG (a balance test where I felt like I was on a teacup at Disneyland), a CT scan of my ears, the dreaded hearing tests (I don’t need a hearing test to know I’m hearing impaired), and finally the visit to the surgeon.

Tomorrow I’m headed to Monterey for the next few days to compete in a bridge tournament (I’m going for the gold!). It’s always a lot of fun…lots of bridge and hanging out with friends.

Yikes…Monday, the 7th looms large! The dreaded day is around the corner. Happy New yEAR!

Though I certainly don’t remember ever having normal hearing, I was born with it. As a 15 month old toddler I was sick with an abnormally high fever. My mother did all she could to bring down that fever. By the time the doctor arrived my hearing was forever damaged as many of the tiny cilias in the cochlea were destroyed but I was not deaf. It didn’t take my parents long to realize something was wrong. Prior to the fever I had babbled incessantly (imagine that!) and suddenly I stopped. Upon resuming the babbling chatter the sounds were not right. A hearing test confirmed their suspicions.

My hearing loss was a fairly typical sensorineural loss. I had very little to no hearing in the high frequencies but I had adequate hearing in the lower frequencies. I could hear moderately well in the critical speech area. Therefore I was able to develop near normal articulation. To this day, I continue to struggle with minor speech sounds though I’ve had lots of speech therapy.

What was it like growing up with a hearing impairment?

For the most part I had a normal, happy childhood. School was generally a pleasant place to be but there were challenges. I was fitted with my first set of hearing aids at age 7 with the goal of hearing better in school but I hated them. Imagine sitting in class and one of the aids suddenly goes “BEEP, BEEP”. Twenty plus sets of eyes pivot in my direction and stare. Better yet, in the middle of a lesson one aid SQUEALS like a pig…twenty plus sets of eyes pivot in my direction followed by laughter. I’m sitting at my desk with flaming cheeks wanting the floor to open allowing me to disappear. This was the beginning of my leaving the house every morning wearing those awful aids but on the way to school they disappeared into my metal lunch pail to roll around among the peanut butter sandwich, cookies and thermos. This deception lasted until the teacher spilled the beans. However, for whatever reason, my parents never made me wear that awful set of aids consistently again.

Over the years I’ve been asked if I was teased in school. I honestly don’t remember being teased much but perhaps I just didn’t hear it.

In the fifties and sixties, most classrooms had children sitting in rows. My elementary school had us sitting in rows in alphabetical order. Being Wendy Weaver I usually landed in the back corner near a wall which I liked. I could easily pass notes to friends without the teacher being aware (or so I thought). When my mother discovered I was in the back, she marched in to chat with the teacher and I ended up prominently in the center front of the classroom…out of ABC order. More unwanted attention drawn my way. When asked why by my classmates, I’d mumble something about being able to see the board better. I wore glasses, too, but that was okay because I wasn’t the only glasses wearer.

I remember watching the Ed Sullivan Show with a comedian making fun of mentally retarded people (what the mentally disabled were called in those days or worse). Another episode featured a comedian poking fun at cerebral palsy victims with imitations. These “acts” left me feeling confused as I perceived I was less than whole. That was truly the beginning of my shame at being hearing impaired and less than “perfect”. My inability to hear well became something I needed to hide.

My most embarrassing school girl moment came when I was in 8th grade. While sitting in an awards assembly in the school auditorium the boy seated next to me jostled my arm and told me I needed to go up on stage because I was receiving an award. To this day, I don’t know if it was a prank or he really believed my name had been called. Upon reaching the stage, the administrator was trying to get my attention to return to my seat. I only realized what was happening when the real award winner, Wendy Wiedenmyer, a 7th grader, stepped up to shake hands and receive her award. You can well imagine how mortified I was. I returned to my seat in deep shame with many of my classmates laughing at me. That experience taught me to vigilantly “watch” for my name to be called when sitting in medical offices or anyplace where one is called in for an appointment. I remember being filled with anxiety when waiting to cross a stage to receive my high school and college sheepskins. What if I didn’t hear my name called?

Another equally humiliating experience that same year was in music class. We were singing chorus style on risers when the teacher, Mrs. Bonelli (we called her Smelly Bonelli because she wore heavy perfume and was not well liked) suddenly stopped playing the piano and loudly admonished me saying, “Wendy, you’re off key. Please stop singing and just mouth the words.” More giggling from my peers. More importantly I was never comfortable singing in public again.

High school was a mostly positive experience for me. Because I had lots of friends and was involved in numerous activities such as the school newspaper and yearbook, I enjoyed those years. The one not so good experience was trying out for the drill team and not making it. At home I practiced my heart out on the try-out routine to the record on my phonograph and had it nailed. But because I couldn’t keep up with the beat of the live music played by the band as I performed (I had to watch the other girls), I didn’t make the cut. For whatever reason, I was disappointed but not crushed.

The challenges faced in my grownup years will be continued later this week in Part II of “How Did I Get to This Point? The Adult Years”.

Oh no…My Cochlear implant surgery is scheduled for Monday, January 7, 2019…only 30 days away. I’m full of anxiety while also full of anticipation. I’m imagining a world a year from now where I can actually…I mean REALLY hear my husband from another room, hear in a group setting, catch the chitchat at the bridge table at the local club, be able to have the TV volume much lower (my husband, Don, can’t wait…claims it sometimes blows his hair back!) track my book club discussion easily, perhaps even truly follow conversation while out to dinner with friends. I may even be able to attend a movie at the theater and attend live theater. Perhaps even hearing the announcer at a sporting event outing. All normal activities for people with good hearing. Currently, for me, these things are frequently “wah wah wah” and more “wah wah wah”.

The road to making this decision was not easy. It started with my first appointment at my surgeon’s office in May, 2015. I was told I was a perfect candidate for an implant. But…mentally I wasn’t ready. I manufactured excuse after excuse. I had trips planned…the Mediterranean, a bridge cruise with friends, the list goes on. Besides, I think I’m functioning at a very high level…or so I believe. I don’t know what I don’t hear but I am aware of how fatigued I am day in and day out from straining to hear.

At some point this year, I made a decision to get a Cochlear implant (CI) in January of 2019. I started telling people about it and planning my calendar around the idea. In August, I actually started down the road to better hearing with a call to the ENT where I started. Appointments were made for the various tests involved before I could meet with the surgeon and schedule surgery. Gulp…it’s actually happening!

I thoroughly researched the types of implants, I’ve read blogs and I’ve joined an online CI support group. While being mostly wonderful, the group has also filled me with dread as some of the stories are sad…awful actually. I’ve emailed my surgeon numerous times peppering him with questions (he’s been fantastic as he answers thoroughly and always gets back to me within four hours). I’ve been through the woe is me phase…why me, dear God??? I’ve been maudlin about what’s involved with a CI pouring out my concerns while exhausted (I was hostessing that evening) to the supportive ears of my book club. My bridge partners have heard it all and my poor husband has escaped nothing ad nauseam but I think he still loves me.

Okay…what’s the point??? I’m ready to proceed and actually excited about my upcoming CI and everything that goes with it. Naturally, I don’t want to go through surgery or a month of hearing with only one aid until the implant is activated. I look forward to when the real work begins…retraining my brain to hear artificially. I’m ready!!!