Trust and Leaping Off

We’ve been dithering for nearly five months. Our decision made to leave – walked back because case numbers climbed in the south. Our decision made to stay – turned over because our goal in selling the house was to leave Alabama and move to be closer to family. Our decision to live in Oregon on again and off again because taxes in Oregon are out of sight for property and income tax.

On one side of a scale: We want to help our family by being there, contributing financially, sharing, cooking, doing fun things, camping, schooling, playing, learning, joining, and loving. On the other side of the scale: fear of being exposed to Covid-19.


Left Alabama Sunday, July 12. We’re going west.

First a stop in TX to get new tags for our expiring vehicles and to vote. What are we doing buying tags in TX? We’re Escapees members and use their service for a mailing address. With tags expiring and no home state in sight a domicile this in TX makes a lot of sense, in the short term.

Today, July 18, finds us in our last RV park in TX. Reservations at electrical hook-up parks all the way north and west were a MUST in the heat of summer. Weirdly, the Friday before we departed, there was an epic heatwave all across the south and southwest – thank goodness for hook-ups is all I can say.

In TX folks are mandated to wear masks inside. Often people put them on in the car and wear them walking toward the business or building. Nobody seems too incensed about it, they just do it.

We stayed in a lovely city park last night. There was a huge turquoise swimming pool, across the road a gentle river that rolled over wide shelves of rock ducking into pools where folks swam and a river trail following along. It is the perfect summer place for families and well used. Folks wore their masks to the pool but not in it. They sat in small groups beside their tents and RVs – no large groups, they seemed friendly and kept social distance. Nice, so nice to be in a lovely place that managed a bit of Covid summer ”normal”.

Sweet small towns tucked into the folds of the hills of the Bosque region in TX. Lovely rolling hills, rivers, lakes and giant cattle ranches. The brick ‘western’ facades of the centers of the old towns – plazas anchored by dignified four story county seat buildings with 1800’s architecture of brick and local rocks.

Today we enjoyed the varied colors and formations of the wonderful New Mexico landscape and landed in Winslow, Arizona for the night.

The roads have much less traffic – even the interstates. People everywhere in NM are under a mask mandate and didn’t seem to fuss about it at all.

This is an interesting country. In the news today a story about a Florida woman who called 911 because her fridge broke, the call resulted in the police buying her a new fridge and helping her with it. On the other hand, in another story we have a woman who dropped her pants and urinated in a Verizon store because she objected to wearing a mask. These seem to be off the chart crazy times.

We’re staying safe, I’m not leaving the RV except for the occasional evening walk until we get to Reno/Sparks/Trukee. We’ll stay there a couple weeks to check out the area and see friends. Then we need to move forward again.

I’m so glad I had my first kidney transplant 33 years ago! We have had a while to train for this pandemic. Barb does our going out stuff, masked up and face shielded. When she returns she washes any purchases down with clorox (not fresh food of course) and washes her hands vigorously.

This is how we live: We are on the fringe. Smart, not scared. Cautious, not reckless. Protective, not paranoid. Proactive, not passive. Insistent, not aggressive. Conscious, not selfish.

Implant Success Story

Having a cochlear system sure gets more interesting. I need to learn to locate the direction a vehicle is coming from and the direction a bird song originates! Luckily the University near me has finally figured out the online situation for Cochlear training and rehab. I cannot wait. I have things I want to discuss with the Cochlear Audiologist who runs the group.

My taste buds continue dysfunction, at first I wasn’t bothered by it. Now, I cannot wait for those nerves to recover! I’m already super skinny and food tasting ‘off’ is no help to my appetite. Mean 20 months to recovery per one of the studies I read.

There is so much that is positive and that my cochlear adds to my life, it still feels like things balance to the fabulously lucky side of the scales.

implant surgery was January 12. 2020. Activation 2/3/2020. Mapped 2 times then Covid hit, usual mapping appointments cancelled.

Today I was mapped again after extensive testing.

In November, on the Monosyllabic Word Test Key (CNC List 1) MTSB CD Track 14 my results were 4 out of 50 words, 49 of 150 Phonemes or 32.6%.

Today, 5/12 same test, list 6: 44 our of 50 words, 142 of 150 phonemes or 95%.

In November on the AZBio Sentence Test, List 5: I scored .01% correct.

Today, I scored 95% without my HA in my non-implanted ear, in the booth.

With the advent Coronavirus and masked communication and electronic get togethers with family and friends, I’m very aware of how lost I would have been in these frightening times were I still relying on my HAs. Now, because I have a CI I am not afraid, I can hear folks talk through masks, communicating on Zoom and FaceTime are amazing experiences. Best are times spent with the grandchildren on FaceTime! I love how expressive they are when they read to me. Love love love.

The park was closed for three weeks and has reopened to the public. Trails here in Blakeley State Historic Site (last battle of the un-Civil War) are wonderful. We hike miles daily and pick up trash. Weekends we stay around the RV as the park fills up. Friends Sue and Marsh come visit for Thursday hikes at social distance and wearing masks. We sit 10’ apart and eat lunch we bring. Many people around here don’t believe the virus is a threat, no masks.

I don’t need to tell anyone about the world and the virus or about the protests.

We haven’t been able to come to consensus about leaving the park, going west or much of anything future. We work on the RV, do aural rehab, make wonderful meals. Barb shops – masked and face shielded – and we cope with grocery shortages.

Marching along… sorta

March! Gosh, It’s been 6 weeks since my processors were activated. It would take hundreds of words to describe how much my life has changed. Things I could never do before – talk with my friends on the phone, talk with my grandkids on FaceTime – I now enjoy. A pine warbler was outside the RV window and the sound was so interesting, detailed and rich. 

Covid-19. I am an immunosuppressed kidney transplant recipient – 20 years out – and this Covid-19 has me scared. I’m self-isolating to prevent exposure. I wasn’t able to do a huge shopping trip because the number of people in grocery stores. I normally shop at odd hours to avoid the crowds. Barb shops and we use bleach to clean packages coming in to the RV. Oh, yes. We finished renovating our house and it gets listed today. Our goal before the virus was to sell the house and move closer to our grandchildren. Now, we’re trying to decide what to do at all. Sticking in this lovely state park seems a good bet at least until the house sells. So not only have I been learning how to hear again, but the rest of life is topsy-turvy.

I’m still experiencing taste bud issues. A persistent metallic taste throughout my mouth and reactivity to salt and sugar that blow both flavors up to an intolerable level leave me not so hungry. 

Aural rehabilitation has been a blast. I use Angel Sounds, listen to audiobooks, talk on the phone, and was talking to anyone who would stop a minute when I was out – not now with the virus tho, I’m home. Barb reads challenging word sets to me – “P” Vs. “T” sounds are a problem. Pill – Till, pick one ‘fail’. It’s mostly interesting and funny. I’ve not been able to do the level of rehab I needed because of house renovations and Covid keeping me home. With hope there will be more time for more rehab now.

With hope you are all social distancing etc. I read a good thing, “Don’t do social distancing because you could get the virus. Practice social distancing as you HAVE the virus and protect others in your community.”

How things have changed! In this Covid-19 world, we are living in our 28’ RV. We got the house on the market and it sold in four days – we’re just waiting for closing now. We had planned to go west and to find a new home. All of that is put on hold since RV travel is restricted by private and state campground closures.

I am SO GRATEFUL I had a cochlear implant! Beyond grateful. Without the incredible improvement in hearing, isolation would be torture for me. I talk on Zoom with family and friends, big groups of us. Barb and I have started the Mindfulness based meditation, MSBR, eight week class. I meditate with my eyes closed, listening to the guide (that would have been utterly impossible before CI). 

Barb complains that I speak so softly now she can’t hear me!

I am still doing aural rehabilitation – even though my university based cochlear audiologist is no longer working. 

With hope, things will return to ‘normal’ in the next year or so.

Time keeps passing and having a cochlear system sure gets more interesting. I need to learn to locate the direction a vehicle is coming from and the direction a bird song originates!

Luckily the University near me has finally figured out the online situation for Cochlear training and rehab. I cannot wait. I have things I want to discuss with the Cochlear Audiologist who runs the group. For those interested, my taste buds continue dysfunction, at first I wasn’t bothered by it. Now, I cannot wait for those nerves to recover! I’m already super skinny and food tasting ‘off’ is no help to my appetite. Mean is 20 months to recovery per one of the studies I read. There is so much that is positive and that my cochlear adds to my life, it feels like things balance to the fabulously lucky side of the scales.

World of Understanding

Two week appointment was yesterday. My CA (cochlear audiologist) tested my hearing with my processor on, in the booth, using the ascending beep/noises. At first I couldn’t figure out the noises, they seemed to vibrate or warble in my ears. Once I was able to identify the sounds, the test went very well. Dr. Roberts said that my hearing is already very close to target! She redid the test in my CI ear without my processor and my hearing clocked in at the very bottom of the chart – Yipes. 

So, what have these two weeks been like? Stupendous. That’s the word. Wonderous, that’s another one that fits nicely. Let me give you some examples: doves wings slipping through the air as they rise from the ground near where I knelt – ethereal. How about a concert of lovely high ringing notes when ice hit the sides of the glass in a busy restaurant? How about FaceTime with my grandson and almost understanding every word while understanding my son, who I’ve not been able to understand for 20+ years? And NPR on the radio, understanding the discussion. And hearing while understanding my wife who spoke to me while my back was turned, behind her face mask she wore while sanding some wood, amazing. Many tearful moments of hearing lost sounds. 

When I must remove my processor to sleep, it is confusing – suddenly, no sound. As if I had taken off my right hand. In the booth without it, I could only feel that encompassing fear I used to feel when getting my hearing tested… fear of failing, looking stupid, being seen as incompetent.

I don’t want to take you on a ‘Merry Sunshine’ ride here, there have been difficulties, none concerning the function of my CI though. I have still got pain in my inner ear and itchyness (a sign of low grade pain). The pain arrives in the late afternoon or evening nad persists into the night, so it is helping me to be more mindful about how tired I am – hearing fatigue hasn’t disappeared (yet). On that note, usually I’m so much more relaxed than with my HAs – I don’t have to work hard to understand now.

Nuts and bolts. After the processor was turned on and mapped the first time, I was instructed to increase the volume (using my remote) from 6 to 10. Yesterday we re-mapped and I’m starting back at volume 6 again. It’s about building tolerance to sounds I’ve not heard in years. This is such a complex process!


Feb 3, 2020

My processors were activated Today!!!  What a wild experience! First thing my right ear heard was the softest of beeps in varying tones, the beeps changed as Dr. Roberts activated more of the implant. Finally, Barb spoke to me, epic words “Can you understand me?”  I was so elated, thrilled and relieved when I answered ”Yes I CAN!” 

Like folks say, the sound is electronic. Voices sound like Elmer Fudd and there isn’t much tonal difference unless I sing – then I can hear the highs and lows. The sound is different and I’m dutifully working on aural rehab to learn to hear and have my brain normalize the sounds.

No matter what… from the moment the processor went live, I have been able to understand speech. I can hear/understand. my wife speak from the other room, she whispers to me in the car and I understand. I love this! Thunder, which I’ve not heard in many years, is quite a sound. I can hear the rain, birds, understand some of the radio and some words in songs, It feels like a miracle or magic and is so much better than my poor HAs and amplification. I no longer have problems with recruitment – the processor just doesn’t work the same way so even loud sounds are manageable.

Feb. 9. Riding in the back seat of friends car going to lunch. I normally check out because hearing over the noise has been impossible for years. Today, I suddenly realized that I was understanding the conversation going in the front seat! That was a delightful first. Also, over lunch I was part of a complex set of discussions in a restaurant that was very busy and loud. I didn’t feel my shoulders climbing to my ears, I was able to understand and my body felt relaxed. Another difference, I was easy to know when to interject or answer a question, I could understand!

The house is coming along. We’re working hard and efficiently – not much time left. Sometimes I’m so exhausted after the day of work I wonder if getting up the next day is a good idea.

Sounds I hear change every day, still quite electronic. In the beginning, voices were monotonous. Today, noticed I’m hearing differences in pitch and tone. Amazing.

This is a NOISY world we live in, I find myself glad to turn off sound at the end of the day. It’s been a long time since I’ve heard keyboard clicks, water going down the drain, the dryer beeping, hammer bangs…



Post-Surgery to Activation

The 6” incision behind and above my ear looks pink and kind of ugly, it is easy to care for now. Turns out my taste buds were affected by the surgery – it’s so weird to taste familiar things and experience some other taste entirely than what I expect. Also the mouth-feel of food is off. Things feel silky, even crunchy things are silky! The balance issues went away. Pain is still bothersome, intermittent almost stabbing pains along with some low-grade itchy pain around the surgery site. Healing.

Soon, I go for incision check and we’ll set an appointment for activation of the processor. Activation. Gosh, wonder how my brain will interpret the electrical signals along the cochlea.

I was interested to learn that in the cochlea there are over 3,000 nerves that react to the stimulation of sound. Mine were damaged severely, who knows how many were functioning before the implant. The implant will stimulate 24, such a small number compared to natural hearing. I can’t imagine how that stimulation will allow me to understand speech.

Jan 25. I’m driving, running errands, picking up materials, doing yard work (trying not to lift over 10-20#), cooking and trying to hold up my piece of the sky! 

We are in the midst of preparing our house for sale and packing up our things. Remodeling the kitchen, getting new flooring installed, de-weeding the yard etc. Today, I realized that having the surgery and expecting to recover quickly enough to get on with the work I need to do is CRAZY! Yipes. There are four weeks left until we “go live” with the house on the market – crossing my fingers.

I’m still in pain. My surgeon says it’s likely because they have to use ‘packing’ in there and use a gel that absorbs back into the body – and because it is major surgery, tiny surgery but still significant. The pain feels like a terrible case of swimmers ear with someone intermittently poking that area with an ice pick. I do not like it. Pain meds knock it back though though I resist taking them.

I realize I may have somewhat unrealistic expectations for post-surgery recovery. I’ve had two kidney transplants, a parathyroidectomy and an upper eyelid/forehead lift (to correct and give me back my peripheral vision). I was off pain meds within the first 4 days with all of them. Counting the days until pain goes away. 

Did I already mention that my taste buds are affected? Apparently those nerves are close to the facial nerve. My surgeon prefers to lean over toward taste buds and away from that facial nerve. Thank you, Dr. Blythe! My taste buds will grow back and I’ll be okay again. That’s one thing I don’t need to worry about!

A good thing is that when I put my right HA into my ear, looks like I have some some residual hearing there, I heard the start-up beeps! That will help with aural rehab. 

We met with my audiologist on the 23rd. and got a lot of reassurance. Looks like we will activate early. My audiologist wants to start with the smaller processor, the Kanso. She’ll activate that one and then the OTE processor. I am so excited. Since I’ve been disappointed about post-surgery recovery, I am hoping madly that I won’t be disappointed when we activate. 

I’m working to get MyCochlear account going so that I’ll have individualized attention from Cochlear should the need arise. I’ll have access to the Cochlear Rehab site. Likely, I’ll use the Advance Bionics and Med-El rehab sites and Angel Sounds. Anything that will advance rehab. I want so badly to be able to understand my family, especially my four grandchildren.