Barb and I again drove up to Opelika a day early. This time we would stay two nights. We have been working so hard on preparing our house to sell and getting things sorted, packed and into storage that we were both exhausted. The plan was to eat snacks and veg out in front of the TV – the captioned TV, lol – get a ton of rest and go to the Surgery Center refreshed.

The surgery went off without a hitch and Dr. Blythe was very pleased. It’s an outpatient surgery, so after I woke up enough and got bandaged up – we headed back to the hotel.

The part of the implant that goes into the ear is a tiny spiral of metal. It straightens out as it slides into the curves of the cochlea, then the surgeon releases it to kind of float in space in there. Another part of the implant is attached to bone to anchor the device. The third part of the implant is just under the skin and is the place where my processor will attach. See bottom image.

Since it’s difficult to put bandages behind the ear, I have bandages plumply extending out of a cereal bowl sized cup that fits over my whole ear and straps over my head. It’s pretty goofy but sure protects my incision and tender spots. That stays on for three days.

I am sore and pain meds are managing it. The incision extends in a curve around my whole ear and is healing very nicely, per Doctor Barb. This morning I experienced some balance issues, expected and not uncommon, which have faded during the day. So, other than taking it easy for a few days, I await activation on February 3. Wish me luck!

Then came appointment day. We drove up to Opelika the day before (3 hour drive one way) so I could rest and be at my hearing best when I met with Dr. Blythe the next morning. [Hearing exhaustion is a huge deal, the more rested a HoH person is, the better we can understand speech.}

Let me tell you, the appointment was a big surprise to me! I went into the room and right away turned the exam chair around facing away from a very bright octagonal window, looked over the seating in the room and decided where I would sit. I don’t mind telling folks how to speak with me – especially doctors, it’s important I understand as much as possible (Barb helps with the rest). I have a whole speech I give – “If you want me to understand what you are saying please face me, stay away from windows and bright lights, speak slowly and enunciate clearly”. etc.

Dr. Blythe came into the room, worked at turning the chair back around and proceeded to wash his hands (facing away from me) and talk. I immediately protested! Nope, that didn’t work at all, he ignored me. He told me to sit in the exam chair. I explained I wouldn’t understand him and he commanded me to sit! YIPES. So I sat, he looked in my ears and cleaned out some wax while moving my head around roughly. I looked at Barb and mouthed “No WAY!” I did not like this guy! I was steaming.

He had me sit down in the chair I’d chosen earlier and began to ask questions. I asked that he slow his speech and speak more clearly. He replied that he was speaking at normal speed in a normal voice and that the problem wasn’t what he was doing but that I do not hear. I thought “Wow that’s a news flash!” I thought.

Suddenly, Dr. Blythe’s brusque demeanor completely changed. He said that he can look at audiograms, “AC Bio” and “Hint” tests all day long and not get any sense of how an individual functions in the real world.

The whole beginning of the session was a test of my functioning and how much Barb helps me. He changed the way he was speaking which helped me understand more and explained the surgery, risks and recovery process. By the end of the session, I had completely changed my mind! Though I’ll only see Dr. Blythe twice, I know he’s the surgeon for me. The office scheduled my surgery – January 16 which happens to be my birthday.

Barb and I went to lunch and drove back home to await surgery. I’m not sitting on my bunz here, though. I received an invitation to a cochlear community meeting in a nearby city and sent an RSVP to attend both the meeting and an open house.

We both had fun meeting more CI recipients. They gave me advice about post-surgery tricks and about how to adjust until the appointment when I would receive my processors, have them activated and they were adjusted to my comfort. I asked each person, “What regrets do you have about your CI?” and each person has said “Absolutely NONE!” Meeting with folks helped calm my anticipatory nerves down. It was pretty bad as my surgery date was fast approaching!

I just realized that I’ve left out a key piece of information. The implant surgery is one step out of many. It takes a while to heal – two weeks in my case. Then you have an appointment with an Activation Audiologist – Dr. Roberts will be mine. She did my qualification testing and by using the baseline set by testing, will know where to begin when she turns on my processors. See, the processors work with the implanted device. They transform sound to electronic impulses that the implant brings to my cochlea.

I like this explanation: the tiny cochlea is similar to a piano keyboard if it were rolled out flat. The implant has electrodes along that keyboard and the processor stimulates the keys that the nerves in my ear no longer stimulate. The cochlea learns to understand those sounds as they exist out in the world – human speech being the most important to me. Each processor has a pair of microphones that pick up the sound, then the processor ‘decides’ which sounds are most important for the ear to receive. Background noise, for instance, is relegated to less important status and the words of someone speaking to me is brought right to the cochlea.

Really, activation day is the day I’m excited about! CI recipients often describe activation day as the first day of their new lives.

I started researching cochlear implants (CI) a few years ago. Research has always been important to me and helped me make health decisions. I’ve been ‘involved’ with the medical community since I was diagnosed with Glomerulonephritis (from a strep infection I had as a child). After that diagnosis, I went to the nearest medical school library and dug through anything I could read about the disease. From that point I have become an extremely well informed ‘patient’.

Initially, I wanted to know what people with CIs said about the experience. There are lots of online and YouTube stories told in the first person by CI recipients. I also talked to anyone who had a minute to share their story. Somewhere in that time, I stopped feeling that CIs are disfiguring. The stories folks told about learning to hear and how their brains somehow learned to translate the electrical stimulation in the cochlea into recognizable speech, are inspiring.

I looked at the dangers of the surgery. A certain small number of implants are not successful and I wanted to make sure I was not one of them. Since I needed to have two kidney transplants and faced the risks of those surgeries, the CI risks paled in comparison. One thing I learned is that the surgeon is super important. They need to have performed many many CIs building an impressive skill level. I found it important that the surgeon take pains to see me as a person, to know what I hope the CI will do for me.

I also looked at each of the provider companies. First at their longevity in the business, their financial stability, reputation and customer reviews. I also assessed the support the companies offer. Since I travel so much, I looked for a company that would work with me no matter where I am, should one of my processors have a problem. It’s important to me that if I need an adjustment, there will be a lot of audiologists around who have worked with my CI company and know the processors.

One of my favorite sites: https://www.fda.gov/medical-devices/cochlear-implants/benefits-and-risks-cochlear-implants takes a hard look at CI and gives information about what to expect. I went back to risks and recognized that some of my decisions to choose Cochlear Inc. addressed the very risks listed. For example: ‘won’t be able to swim or shower’ – I chose a waterproof case for my processor as one of my accessories. I haven’t trusted swimming for years, being so deaf I wouldn’t have known that someone needed me out of the pool or ocean. A

Dependence on batteries is another worry – well, right now I’m dependent on batteries for my HAs, I have them in all of our vehicles, in all of my backpacks and my purse, in the pockets of several outdoors jackets, in drawers in the front of the house and the back, it’s pretty funny. CI batteries are rechargeable. I decided I’d need two batteries so I would have a back up in case the one I’m using runs out.

The idea that I’ll have to use processors for the rest of my life isn’t disturbing because I wear HAs from wake up to sleep and have for years.  There is no end in sight to that scenario, the only difference is that with the CI I have a chance of improved understanding and engagement with my world.

Upgrades can be another issue. I’m not worried about that because the company does upgrade processors and the current implant is going to be effective for a long time yet – or so I have been assured. The technology of external components is constantly moving to more fleet, flexible and smaller components (same as computers).

Another big concern for me was that at some point I may need an MRI – the implant I’ve chosen is one that is technologically capable of being in MRI. I learned the protocol for how to deal with MRI and have everything about that in a file just in case I need it.

Armed with tons of information and the stories and experiences of CI recipients, my confidence about succeeding at the CI process soared!

We were still traveling home when we found out I could get an appointment for a Cochlear Implant evaluation at University of South Alabama at the Speech and Hearing Clinic. The appointment was with Dr. Wilder Roberts. I knew we wouldn’t be able to make the distance in time, so I flew home for the appointment. Our friends Sue and Marsh picked me up at the airport, we ate out and they offered to let me sleep over before they ferried me across the bay. Since, I’d planned to uber to the restaurant and then across the bay, this was an enormous gift! I loved staying with them, we stayed up late talking – it was one of my perfect times lately!

Meeting with Dr. Roberts and her staff started off with lots of questions before the tests in THE BOOTH. Questions concerning situations that are hard for me to understand in, what about when I can’t see someone? Crowds? Groups? Did I ever feel unsafe (all the time unless I have a hearing person nearby and especially when I’m home alone)? And more.

Dr. Wilder explained the test I’d have in the booth. They would play three different voices speaking simple sentences at normal speaking speed. I would just repeat any words or phrases I could understand.  Into the booth I walked, hearing aids on and sat down in a chair placed a couple feet in front of a single good sized stereo speaker. The team adjusted the volume so I would feel comfortable. This almost the ideal hearing situation; quiet place, comfortable volume, light on overhead, no distractions EXCEPT that I couldn’t see the people speak.

The voices began. I repeated the occasional word but spent most of the time muttering to myself – ‘if the speakers would slow down…’if the one guy would speak more clearly…’ I tried and tried to understand. The test went by quickly, I thought. Suffice it to say, I didn’t do so well. I tested at .1% of understanding in one ear and .4% in the other. That means that out of 100 words, I understood one and four respectively.  I thought they would give more tests but they didn’t. I’d been warned about being exhausted and to plan for a quiet afternoon. I felt alright though.

Dr. Wilder got out the kit with the Cochlear System processor we looked over the equipment. I had already done tons of research and talked to other CI recipients and had decided that the Cochlear America equipment was for me (if anyone is curious, I’ll be glad to share my research and reasoning).  I decided to order the shiny black version – it is at least rather chic (the one that “matched” my hair was a dull mustard yellow, ick).

That over-the-ear-processor (OTE) is sure big! I asked for the smaller processor, Kanso, as well – even though it doesn’t have all the bells and whistles as the larger. We discussed accessories – the swimming covers for the OTE processor, a mic, a streamer for the Kanso. Then we discussed surgeons. Most everybody was booked for months ahead – I felt strongly about going to a surgeon who had done a LOT of implants.

We are scheduled to meet a new Caravan group in Maine to make a 59 day trip through Canada’s Maritime provinces in July. I really need to have the surgery and activation as soon as possible so that I can be doing aural rehab for a while before being confronted with hugely challenging situations. Post-cochlear hearing is more electronic and takes the brain some time to accommodate to so that one can understand speech and speech begins to sound more human.

Dr. Wilder had worked with a very experienced surgeon, Dr. Blythe, in Opelika, AL for some time and very much respects him. I was comfortable because she said he’d done over a thousand implants. She sent her referral and we waited to ‘hear’ from the East Alabama Ear, Nose and Throat Clinic.

New adventure! This one doesn’t involve much travel but does involve a huge life change. I have hearing loss – one of millions of Americans who do. My loss is quite severe and had interfered with who I am. I love people, I love talking to and connecting with people. With hearing loss, communicating verbally becomes terribly difficult. I’ve been posting on the Mayo Clinic Hearing Loss forum about my adventure toward improved communication:

I’ve been loosing my hearing for around 25 years. It started a couple years after my first kidney transplant – or that’s when it got bad enough to go see an audiologist to see why I was saying “What?” “Pardon?” “Could you restate that?” I would get home from work seeing clients and would be utterly exhausted, for no apparent reason. The audiologist I met with, Dr. Robert Sweetlow, advised a hearing aid (HA) for my right ear. I can’t even tell you how many HAs I’ve had since then – about enough to buy a nice new car I’d guess, since they run between 2 and 8,000 dollars each.

As my blog readers know, my wife and I work and play for an RV Caravan tour company, we are wagon masters and/or tail gunners as assigned by the company. We usually travel with 16 to 25 RVs and go all over North America.  Amazing work and all about connecting with people. I’m with groups of people in all kinds of challenging hearing/understanding situations.

Interestingly, for many with hearing loss, raising the volume becomes less and less of a problem. In fact, after a while one’s ears can become sensitive to volume. I am sensitive to volume, so loud speech or noises throw me off. It’s called Recruitment for some odd reason. What happens though, as recruitment becomes a problem speech recognition (especially of certain parts of speech) goes down. So I lost the ability to discriminate between sounds like

In 2015 my discrimination (an index of how well we understand words using 50 single syllable words, score is a percentage) was at R-46, L-32. In 2017, I got Resound 3D Linx HAs (they’re for severe/profound hearing loss) and they help a lot with my declining speech understanding and work with an iPhone app for great adjustability. Those aids are wonderful. I love how versatile they are!

This year (2019), after a particularly challenging caravan, I decided to make an appointment for another hearing test and adjustment – my aides were just not working! I just wasn’t understanding people and was cranky and exhausted all the time. In Albuquerque, NM I met with Dr. Terry Sankovitz.  After the exam, Dr. Terry showed me my discrimination score… R- 14, L-12. Whaaat? Seeing it on paper my whole insides went cold and still and I got really scared, I was stunned. Barb, my best friend and wife, was just as shocked when Dr. Terry shared the test with her. 

This was a different Discrimination test. For the first time in all the years of tests, this doctor didn’t read the usual list of 50 words to me with her mouth covered. She used a recording of a professional speaker, male, speaking at normal speed. The test is given without HAs, wearing ear buds and the volume is adjusted to my comfort level.

Dr. Terry said that there is no point adjusting my hearing aids further, louder wasn’t working. When asked what improvement to my hearing I dream of, I answered, “To hear and understand my son’s and grandchildren when they talk to me!” For some reason, male voices can be difficult for many with hearing loss to understand. She talked about my options, one of which is cochlear implant and gave me a lot of information – even explained the testing for CI qualification. Dr. Terry offered to get me in for testing soon so I could begin the process and boy was I tempted! We had an appointment to see some people and couldn’t miss the only window of time they had for us to visit. Besides, I had to let everything I’d learned sink in and figure out what I was going to do.

With a cochlear implant, there is no going back. You’re implanted period. But wait… with my ‘discrim’ I couldn’t go back anyway. The other option would be continuing to isolate and eventually to withdraw.

Understanding .4 in one ear and .1 in the other is deaf. I am highly functional because I speech read; read bodies, context and situations – in the right situation I do okay. However, in vehicles, in low light or when someone’s face is backlit, in places busy with conversation, when music is playing, with there is crackling or static noise – I am utterly at sea.

It just happened that Cochlear America was hosting a panel discussion the next day, for people interested in CI (cochlear implant) and for those with CIs. Did we jump on that opportunity!!! WOW. What an eye opening experience. The group moderator was a woman who had been deafened as a child and as an adult had chosen bilateral cochlear implants. The panel talked about their personal cochlear experience. Here’s the best part. They hired a court reporter to transcribe speech and captions popped on a screen for all to see. I am not sure anyone in the room needed those as badly as did I – what a miracle it was to see what everyone was saying.

A rep from one of the three Cochlear Implant companies was at the meeting answering tech questions from recipients. She had a box that contained the whole Cochlear Implant (CI) system, internal and external.

When I walked in the door, I felt unsure and when I left I felt elated. Arms full of booklets and information, Barb and I talked about the meeting and agreed that both of us felt a sense of hope, at last.

Tucson, Pima County Fairgrounds.

To get the ‘dead’ parts we need for Barb’s classes, we scavenge RV shop back lots. This was a treasure trove even if the guy did charge us for the stuff (never had that happen before).

Fairgrounds sunset!

Barb’s class was held in a huge warehouse space because so many woman had signed up!

Barb’s RV Tech training comes out all over in her teaching. She is patient, takes questions, works hands on with folks…

These Tucson sunsets are fabulous, no?

Barb the Post-Teaching Goggle-eyed Woman. 

And we both take off the Maintenance Class hats and slip into vendor hats! We had so much fun at this booth. Several gals from our Alaska Caravan gifted us with their testimonials and help with set up and take down. We are so grateful to our friends Cindy H, Barb E, Naomi & Cindy T. and Inee and Diane. We couldn’t have done it without them. 

THE GREAT 2019 RVW RODEO!

I am the tail of the calf being run through the barrels blind with only our guide’s words to tell us where to put our feet. You know me and why I’m at the tail, right? I’d likely lead us off into the never never my hearing is so bad. What a blast. I also chased balloons and roped a PVC calf. This huge space was full of stations for the rodeo, this is only our corner.

From line dancing, to calf running, to roping to prize giveaways and wonderful classes – this conference was a BLAST!

On this note we head home to Alabama. Barb and I have big changes ahead on so many levels.

Breathe, the time will pass and we will carry on!

We couldn’t resist going to the Painted Desert and Petrified Forest NP, we were right there, relatively. 

Lodge at the Painted Desert.

Bazillion year old pictograph! It’s about 4′ tall!

The old lodge at Painted Desert NP

Petrified Forest  NP

This little log, looks just like it was just cut and tumbled over. It’s petrified wood though!

Those dark red things are huge logs. The ground around them has eroded and left them up there on top. So interesting and amazing colors to boot.

The trees were related to Sequoia Sempervirens.

Barb in a logjam.

Agate house.

I’m only here to give you some sense of proportion. These trees were huge.

Knot hole. Not hole…hole!

Hubbell Trading Post on the way to Canyon De Chelly. We don’t seem able to stop the exploration we started on the Grand Circle Tour!!!

Hubbell Trading Post

The barns.

Very old adobe peeking through.

Inside the house.. .the baskets and art? WOW! This is the ceiling.

They keep the lights low to preserve the baskets, blankets and artworks.

The main plaza, where the people came to trade.

On the way out to Canyon de Chelly (canyon day shay), we stopped at the Hubbell Trading Post National Historic Site. This is an excellent site full of information Hubbell Trading Post – history. We toured the house (free) with a guide whose family had come to this Trading Post. She talked about how John Hubbell would give folks flour, sugar and salt to help them get through the winters. the Hubbell were canny traders though and the house stands as testament to the incredible artworks of the Navajo (Diné) Peoples.

Today Hubbell Trading Post continues the traditional trading and is one of the premier spots to shop if one is looking for authentic Diné weavings; whether old or contemporary. While we were there I was paging through a pile of larger weavings and found a lovely large piece dyed using cochineal – strands colored from pale pink to rich rose and near maroon moved randomly through the weaving. I could see the hands of more than one woman, perhaps a grandmother and granddaughter? It was sold to a woman who visibly paled when I pulled it out of the pile… she wanted that weaving badly. Lucky for her, we were living in the RV… no space at all, none at all.

So what’s next? How did you guess? More pictographs and petroglyphs!

Canyon De Chelly! This is Navajo land so the only way inside the canyon is with a guide. We duly hired a guide, a grandfather who grew up in Canyon De Chelly and who was happy to take us to his grandparents fields. In the summer The People move from the high canyon rim down into the canyon for summer farming, animal raising and to escape the heat. Canyon de Chelly is relatively narrow and as the sun moves across the sky, shadows fall and cool the canyon. Our guide talked us through Diné history as told through the generations.

He told of how all tribes were created from the Navajo and choices between a White and a Black egg caused the People to diverge. The one that chose the Dark egg became the Apaché and other tribes who were nomadic horse warriors. The one that chose the Light egg became Navajo and other tribes who were linked to the land and farmed.

This last photo is behind the little tienda we rode to for bathroom, coffee and stretching. We just walked back to these ruins. The little 4-WD SUV we drove up the canyon in did a fine job through the riverbed that forms the ‘road’. Luckily, it didn’t rain while we were in the canyon.

From inside the canyon, the next day we toured the two rim roads for the nearly birds eye views.

The rock slags down in wide droops, like curtains or antebellum skirts.

Canyon de Chelly is off the beaten track. Both of us highly recommend the trip. The drive is beautiful, the canyon is amazing.

This is the last set of rock art you’ll have to see! Barb and I were so entranced by the art we had seen over these two months that we almost couldn’t stop! This time, we went to Zuni Pueblo and hired another guide at the Zuni Visitors Center.  Kenny Bowkaty (lead guide) took us out to an undisclosed location to hike back to an ancient Pueblo. Likely Zuni in origin, the pueblo spread like a C around a the rock mound pictured below.

Led up the mound to the rock art that floats on the inside of the C, we climbed and listened. Out guide is an archaeology instructor at the Univ. New Mexico so he had a lot to teach. We learned how the people organized and built and that they had disappeared, probably to follow trade routes to better water. Some of the art was created in 1935, but most is ancient.

We learned the Zuni creation myth and that all other tribes came from the Zuni Peoples. Sometime I would like to take a course to learn more about the peoples of the southwest. There are many myths / legends and I’d love to study the patterns they share. Stay tuned, you’ll hear it first!

Modern Pictograph

From here, we head to Tucson for the RVing Women Conference where Barb teaches Basic and Advanced RV Maintenance and we managed to erect and staff the Adventure Caravan’s Booth – sharing our adventures.

Breathe in the ancients, breathe out the stress, time passes.