Our 15th Implant Surgery - a Huge Milestone for Jacob's Ride!

This past month was a huge milestone for Jacob’s Ride. 15 cochlear implant surgeries is a huge accomplishment!

Not only is raising the money an accomplishment, but the level of involvement of Jacob’s Ride is extremely different. This is the first time that we have actually negotiated the financial arrangements with the surgeon and the hospital.

For five years, we have partnered with the Gift of Hearing Foundation who handled this aspect, while we at Jacob’s Ride focused on raising money and riding a bicycle. When their President retired, their Board decided to close the foundation. We are committed to continue the mission.

My life has changed a lot since I got on a bike six years ago. I still ride to commute, but have basically stopped riding recreationally. I am engaged to be married and have different, less time-consuming hobbies. I can now hear with both ears. I could not have imagined this six years ago, yet I could not be happier with where I am today.

The same feelings are for Jacob’s Ride. From the excitement and lofty aspiration of raising $1 million in 2013, to a 2-3 year period of riding across the country again yet being unsure about what the future would hold -  I am thrilled with the role we currently fill.

During the first several years, because of the federal HIPPA regulations, we never were privy to patient information - usually not even names. Now we are directly involved in restoring hope and hearing to individuals with whom we have direct contact. It is very gratifying.

Since 2013, we have financed an average of three surgeries per year. In our new role, and our new application package, we actually have five candidates who have completed the medical testing and have completed the applications. Our goal is to increase the number of surgeries to five per year. In order to accomplish this, we need continued support and donations. Please consider giving one of the most precious gifts of all - the gift of hearing, by donating today.

Local Charity Funds 15th Cochlear Implant Surgery

ANNE ARUNDEL COUNTY, MARYLAND: Jacob Landis of Jacob’s Ride for Hearing (Annapolis, MD) announced earlier this morning that a 51-year-old female in Georgia received a cochlear implant with the funds raised by the charity.

Today’s surgery was the 15th surgery that the organization has financed the medical and physician costs. Jacob’s Ride for Hearing partners with other foundations that pay for the equipment/device costs.

Jacob’s Ride for Hearing was organized in 2013 to raise money and awareness for cochlear implants.

Landis experienced progressive bilateral hearing loss between the ages of two and ten, and received his first cochlear implant at Johns Hopkins in Baltimore in 1999. In 2013, Jacob rode his bicycle to all baseball games at all 30 major league stadiums, kickstarting Jacob’s Ride’s mission to give the gift of hearing to those who lack insurance coverage or cannot afford it.

In a brief statement, Landis said that the financial negotiations for this surgery were challenging but tremendously satisfying. Additionally, Landis acknowledged the professionalism of the teaming foundation, equipment manufactures, surgeon, audiologists and hospital finance departments. Most of all, Landis thanked the donors to Jacob’s Ride for Hearing for their continued support.

Since Jacob’s Ride was founded in 2013, the nonprofit organization has raised nearly $200,000 that has now helped fund 15 cochlear implant surgeries in 10 of states, helping restore hearing for people from the ages of 1 to 52. Currently, in addition to one Anne Arundel County resident, Jacob’s Ride is working with four other cochlear implant candidates from Indiana, Kansas, Nevada and Missouri.

For more information go to:
www.jacobsride.org

My Year of Gratitude

The holiday season is one of the busiest times of the year for me, since I work at a grocery store. When I’m working before the sun rises and leaving well after it sets, it’s hard to maintain that attitude of gratitude that is the essence of personal serenity. But the actual holiday is supposed to be all about gratitude. So many times, when I reflect of thankfulness, I usually end up realizing how much I take for granted. 

One thing that surprised me when I reflected on what I was grateful for in 2018 was that I initially didn’t think about my second cochlear implant. It’s been a big year for me; I got engaged, I moved in with my fiancée, I had a lot of changes at work. But during all of that, I got an implant and began using my left ear to hear for the first time in almost 20 years.

Something so incredible is so easy to take for granted. I think the reason for this paradox is that it is such an every day thing for me to hear from both ears. Even after 19 years of single-sided hearing, hearing with two ears is such a natural benefit. Me and my brain love it so much. The coolest thing about it is how much my brain loves it even though the new ear is so challenging by itself. The best way to explain it is that by itself, my new ear only gives me maybe 11% comprehension (might be generous). My old ear is well above 90% in a quiet environment with no lip-reading. 

Even with such a huge discrepancy, my brain is already so conditioned to surround sound. It is such a joy. It is so noticeable when the battery dies in my new ear. I am so shocked at the decrease in the quality of my hearing. I am amazed at how quickly the second implant has given me added richness, fullness, “roundness,” to sound that I did not have before. And this is all with very poor speech discrimination. 

Not only do I have to be thankful for both of my implants, I also need to be thankful for all the fine people I met in all of my travels that guided me in this direction. My life sounds better now.

Our 2018 Summer Recap

It has been a busy and productive summer. Between Memorial Day and this past Labor Day weekend, I have traveled over 2,500 miles (not on my bike!) and had over a dozen events.

We sponsored 5 minor league baseball events in PA, MD, TN and NC and were joined at those games by nearly 600 supporters. An estimated 160 of these ballgame guests used cochlear implants.

Since almost Day One of our charity, various chapters of Rotary International have been sponsors of our cause. I was privileged to address 3 of their chapters during August speaking to over 180 Rotarians. In all three presentations I was accompanied with local cochlear implant surgeons (Dr. John Little in Knoxville, and Dr. Howard Francis in the two events in North Carolina) Each of these clubs expressed tremendous appreciation for our joint presentations.

During my week-long trip to Tennessee & North Carolina, I have the special opportunity to visit 4 significant hospitals that provide cochlear implant surgeries, rehab and remapping support (Vanderbilt, University of Tennessee, University of North Carolina and Duke). In addition to the honor of meeting with 7 CI surgeons, altold I met with over 50 professional CI staff members and audiologists during these visits.

Mingled in this past summer we made presentations to chapters of Sertoma and QUOTA as well as gatherings with the Bionic Ear Association.

2nd Cochlear Implant: Post-Activation Day 43

Background

The last time I wrote, it was prior to getting the surgery for my second cochlear implant. I was slightly nervous about the pain of the surgery, but eagerly anticipating activation day. Well, that day has come and passed, and my brain has had almost two months of learning how to hear from the new ear.

Surgery

The surgery went well. It was a cold and rainy February morning. My girlfriend drove me to the hospital. It was definitely nerve-wracking to get ready for surgery. Back in 2016, I was lucky enough to be a guest in the operating room when Dr. Howard Francis performed a surgery, so I was feeling a little bit squeamish. I had been under anesthesia at least 5 other times in my life, so that thought relaxed me. 

It seemed like as soon as I fell asleep, I woke up again. My girlfriend was there and she told me that the surgeon said that it was a success and that I had perfect anatomy. I was given a pain pill and a prescription, and a lot of after care instruction. 

It was more painful than I remembered as a child. One of my friends who has children of his own is fond of comparing children’s ability to heal to Wolverine. Maybe that’s why I remember my surgery from age 10 to be relatively painless. I only took the pain pills for the first 36 hours and discarded more than 50% of the total prescription. I went back to work after only 3 days off - including the surgery date. 

Healing went really well. I had to clean the site twice daily. I felt some occasional throbbing and weird discomfort that seemed to be internal in nature. I had a weird metallic taste in my mouth for about a week. The hardest part for me was the top of my ear being numb for about 4 weeks. It just bothered me for some reason.

I was really surprised at how many people at work approached me after the surgery and asked me if I heard better immediately. I had to explain that I didn’t have the external device on yet and that would be forthcoming.

Anticipation

As activation date neared, I became much more excited. I would be listening to music or something on the way to work and think about how everything would change. I tried to frame my thinking using the word different rather than “better” or “worse.” Whenever I was the passenger in my girlfriend’s car and I had any difficulty in hearing I would think about how hearing from the left ear could drastically change things.

The entire last week of waiting was just filled with giddiness. I invited my parents.

I also had nervousness about the surgery’s success. I had a bad feeling from time to time that when they activated me, they would find out that the electrode array had come out of my cochlea somehow. I was worried because I broke my lifting restriction at work a few times, with 40 lb cases of chicken. I tried to not brace myself too much or hold my breath.

I was nervous I broke the whole thing when I blew my nose in the first two days out of surgery accidentally!

Activation

I went into activation with a pretty good understanding of what would happen. We would stay away from any complicated programming and just give me something to work with. I would be given programs of increasing volume and instructions to go to the louder programs as my comfort allows. I went into the activation with a good idea that I would probably hate how it sounded. The general idea was that over a longer period of time, my overall understanding would be better, especially in noisier conditions. But I went into this thinking that in five years, I still might not be able to hold a conversation with my new ear and that I may never talk on the phone with it. 

I was even looking forward to how bad it could even sound. I liked the idea of being able to relate to people who have had a longer adjustment period than I did when I was 10 years old.

When my audiologist started playing the different-toned beeps in my head, which were very loud, it was amazing. The perception of sound almost floored me. I’m not one to wear my emotions on my sleeve and I found myself uncontrollably smiling - almost laughing. When she finally turned me on to hear my family’s voices, it was amazing how little understanding there was. This type of information was being presented to my brain for the first time in so long and my brain had no idea what to do with it. It felt more like a feeling than actual hearing. It felt like someone was tapping onto my brain. 

Pretty much, even though I ended up going all the way up to the loudest program on the first day, the levels were still quiet enough to where my brain would 100% prefer the old ear. So there was perceptually no difference. I listened to some speaker’s tapes from fellowship to which I had a transcript and tried to follow along with only my new ear. I could just follow the syllables, and even then I would struggle. I tried Green Eggs and Ham which was a humbling experience. 

The next day I went back to Hopkins and we went to the all too familiar sound booth. My thresholds for my new ear were still way below my old ear. My audiologist did some changes, and gave me even louder programming. This was repeated two weeks later.

First Few Weeks

Early on, when my brain wouldn’t tolerate louder programming, it would only use my old ear for understanding. I would only notice the new ear during loud sounds or stressed syllables in speech. I would practice for 20 minutes or so everyday using speaker tapes and transcripts. If my battery died on my old ear, I would wait until absolutely necessary to change it because isolation can help. The eye/brain/eye connection is interesting. If I am isolating my new ear, I am not a good judge of what I am hearing - I can’t identify sounds well. If a conversation is happening behind me, I can’t even tell if it’s speech or non-speech for a few seconds. But there are some interesting ways the brain works. When I hear something and then I look at what is making the noise, my brain then helps out because it knows what it is supposed to sound like. I noticed this the other day when our dog was drinking water. I heard a rhythmic sound and then I saw Libby drinking. Almost instantaneously, the sound became more clear and more familiar. 

As the programming has gotten louder, I have noticed my brain trying to balance the two ears, and I definitely prefer to have both ears on as opposed to wearing only my old one. I feel like I am missing a richness or a fullness to sound when I take off my old ear. So in that respect, I know that decision has been greatly positive thing even though it’s an indescribable perception.  

Breakthroughs

Because I haven’t been doing very much isolating in everyday life, a lot of progress has been unnoticable. I had a really cool experience about two weeks ago when I was walking the dog and my old ear died. I had the baseball game on the radio. As soon as the battery died I thought that there was no way I would be able to understand a single word due to not having any transcript or captioning. But the context of the baseball game gave me enough information because I totally heard “Darren O’Day” and “out of the bullpen” and also “swing and a miss struck him out.” It was so exciting. I didn’t understand anything else. This is after only a month and a half.

Continuing to Practice

It’s hard to practice when living a full and active life but I can tell that it is important. I need to step it back up because it has dropped off considerably. I am also needing to start practice more without transcripts. Having my girlfriend read to me while I alternate between reading and not reading her lips is good practice.

2nd Cochlear Implant: The Decision Behind

On February 7, 2018 I will get a second cochlear implant. It’s not a decision I take lightly. I have had one on/in my right ear for more than 18 years. It has given me so much of the life that I enjoy today. Deciding to get the second ear done has been a long process - many say my decision is long overdue.  

Background

When I got my first implant in 1999 it was actually discouraged to get a second implant. At least, that was the impression I got. With the rate of technology change and the potential of stem-cell breakthroughs, it seemed wise to leave one ear open for a different type of solution in the future.
 

I did extremely well with the implant. I was completely mainstreamed in school, conversations in quiet environments were extremely easy even when not facing the speaker, etc. I did so well that I never thought it could get reasonably better. I also stopped advocating for myself and had a rough stretch in my later high school and early college years, a time in which my personal and professional development came to a standstill. I could have received Advanced Bionics’ first BTEs (behind the ear) external device probably fifteen years before I finally did, but I was firmly in the camp of “if it’s not broke, don’t fix it.”

Jacob’s Ride in 2013

On April 3, 2013 I left the comforts of home and began six month, almost 11,000 mile bike ride, to all 30 MLB stadiums to raise awareness and money for cochlear implants. Advanced Bionics became the first and one of the most important sponsors of that endeavor. Some of their marketing people were concerned that I was still using a 15 year old body-worn processor, from the Platinum Series. They wanted me to be seen in a newer model known as the Harmony BTE (behind the ear) unit. I was a little reluctant to try something new, but I had to quickly realize that the Harmony BTE with the in-ear T-mic was the biggest leap in my hearing and speech comprehension in noisy environments in a very long time. In addition the benefits of the microphone placement, it was nice not to have the bulky processor in my pocket or on my belt.

My life was dramatically changed during those six months. The Ride’s purpose was to help others get the gift of hearing. But I was getting the gift of so many others’ shared experiences. In addition to learning and strengthening my self-advocacy skills, the people that I met turned me on to using a t-coil program to talk on the phone and got me interested in streaming devices for the first time.

The single most frequently asked question (by a considerable margin) that I received was; “When are you getting your second implant?” I slowly ran out of any good informed logical answers. After the 2013 Ride, and the subsequent Rides since, the same question has been repeated. Every event I go to, big or small, I get asked about it. Since I have stayed active in the hearing loss community, I have been exposed to a lot of literature and conventional wisdom regarding bilateral implants. It was in talking to bilateral users at the five  Hearing Loss Association of America Annual Conventions (2013-2017) that I really had to concede that I ought to get my other ear implanted. But, again, I did not take any action. I was busy with my life, friendships, education and career; the issue did not seem urgent.                                             

There were two moments that really made me take the leap and call Johns Hopkins to pursue this in earnest.

While I was doing an educational internship at The Listening Center at Johns Hopkins (Fall 2016), my former rehab therapist, Deborah Bervinchak did most of the planning of my schedule. The bulk of my time was sitting in on audiological sound mappings, activations, and listening therapy. Deb definitely had an underlying motive when she had me sit in on a particular rehab session. The patient had a similar story to mine. He/she (privacy concerns - not divulging gender) received their first implant a child and did extremely well with it for a very long time. Then as a late teen/early adult, the patient received their second implant. He/she hated it at first. It had been so long since that side of the head was processing information as sound. What struck me the most though, was even though the patient still tested extremely poorly compared to the older implant (something like 6% versus 92% sentence comprehension), wearing the two implants together boosted comprehension to over 96%. Even though the patient was making slow progress on one side, with both sides of the brain working together, the overall ability to hear and quality of understanding was better. This is in addition to the nearly automatic benefits of stereo sound; localization and hearing in noise.

Even after that revelation, I did not do anything about getting another implant. I started training for a new position within my company, and as always, life was generally busy. But then I got a second wakeup call.

2017 Visit to Durham - Duke University Medical Center & MEDEL

In early June 2017, I traveled to Durham, NC. There, I met with the cochlear implant Team at Duke University Medical Center and the management team at MEDEL - North America. Of course, we took in a Durham Bulls baseball game, and had a Jacob’s Ride event at the ballpark. It was lots of fun and I made many new friends. Doctor Howard Francis (Duke, formerly from Hopkins) and I were honored to ride our bicycles around the warning track as we were introduced to the evening crowd.

During my meeting with MEDEL - North America, I met Johanna Patzold. She has a perfect hearing in one ear and an implant in the other. The conventional wisdom that I had heard was that in such cases, the brain will not adapt well to the implant because of how alien it is compared to natural, acoustic sound. Cases like this are not recommended by the FDA, and it would be extremely difficult to get it covered by insurance. But this woman worked in theatre, and had a strong need for localizing sound.

I was incredibly fascinated with her story. As one who has heard electronically for so long, I am often curious as to how normal hearing sounds. Everything sounds so normal to me because of how well I did with my first implant and my particular hearing loss history. It sounds perfectly normal, just as it should be. But I know that there is no way it actually is normal. So, the opportunity to talk to someone who could literally compare an implant to perfect hearing was exciting. When Johanna takes off her implant, she has perfect hearing in her other ear. If she uses an earplug over her normal ear, then she can hear the pure electronic stimulation (well, her brain’s interpretation of it, anyway).

What Johanna told me was most instructive, and probably changed my life forever. She said she didn’t like it at first, that when she isolated the implant, she couldn’t tell the difference between a saxophone and a piano.                                        

But with a lot of training, work, and time, she now prefers music with her implant on rather than without it. She says that her appreciation of music is incredibly enhanced, not so much by the implant, but by having two ears. I never thought of that before. She compared it to a TV going from “black & white” to “full color”. Her perspective was, that even though it is different, two ears are so much better than one.

I love music. I have enjoyed music the entire time I have had an implant. Like anyone else, my music tastes have changed over time. I have to read lyrics to songs that I don’t know very well, but that is a speech comprehension problem more than a music appreciation problem. I know that there are many implantees out there that never truly enjoy music like they used to. But I love music. To anyone curious, my favorite bands/artists today are Old Crow Medicine Show, Hank WIlliams Sr, The Beatles, a lot of other classic rock, Eminem, etc.

To be told that just by having another ear to hear with will enhance my appreciation by so many levels made me eager to get a second implant. What really floored me was that the impetus for this was coming from someone who had perfectly normal hearing in one side.

Getting the surgery scheduled was a really quick process for me. My father remembers the large number of pre-surgery required appointments and tests in late 1998 & 1999. But this pre-surgery screening routine, for the upcoming implant surgery, was really quick and easy. My audiological consult already happened when I went in for my previous reprogramming with Jennifer Yeagle at The Listening Center at Johns Hopkins. We’ve already known for a long time that my other ear was a candidate. I think the only additional audiological test was to put a hearing aid in the deaf ear. I scored a perfect 0% on everything even with the hearing aid! Yay!

I had a minor problem with my device about a month later and wanted the device checked out by my audiologist. She took the opportunity while I was there to do the device selection appointment. I am sticking with Advanced Bionics on my second ear. I have always been really happy with AB’s support services. It is strongly discouraged to have two different brands.In that appointment, I was awarded a certain number of “points” and I was able to choose which accessories and devices I am getting.

My otolaryngology appointment was a breeze, and I was vaccinated for something at the same time. The only other appointments I have had to make is to get the CT scan at my primary care doctor for the surgeon, and an upcoming pre-surgical screening, which is also at my primary care physician.

Looking Forward

I’m slightly nervous about the surgery. I have been through a lot of physical pain before in bicycle accidents, surgeries, etc. But I don’t exactly know what to expect. I know I’ll be under anesthesia but I still don’t like the thought of scalpels and stitches. But I ought to relax, because I’ve been through this before, and I know it’s not as painful as some of the other stuff I’ve been through. I was running around and playing within 2-3 days of my first implant surgery. The surgery now involves a much smaller incision as well. I’m not looking forward to missing work, and especially not looking forward to taking time off from powerlifting. I can’t lift anything more than 25 pounds after this surgery in order to avoid pressure in the head.

The only real anxiety for this surgery was the amount of time it took to get final approval by my insurance company. Any additional delay would have caused real problems in rescheduling my time off work. Thankfully, the approval came just in time.

I am incredibly excited for my activation date more than anything. I can’t wait to hear something on my other side. I know that it will be different and challenging but I can’t wait. It will be important to not get discouraged and to keep my expectations in check. Now that I am 28, I need to understand that progress will happen in months and years - not days and weeks. The important thing is to keep working at it and practicing.

One thing that seems kind of funny, even now (since I’m writing this before my surgery), is that my old implant is such a profound part of who I am. I put it on sometime in between my first and second cup of coffee in the morning. I feel comfortable wearing it, and am not embarrassed at how it looks on my head or anything. My hair is short and it sits proudly on my ear. When I imagine my second implant, it seems so wrong. Am I going to look weird? What will people think of someone with not one, but two devices on their head? I’m sure I’ll feel better about it in time.

Everyone with hearing loss faces this kind of decision in their own time.

For me, the time is right to take this next step in my journey to regain the hearing that I lost as a 9-year old boy.

Busy Summer Approaching

Even though I will not be doing any organized or long-distance bicycle riding this summer, it will be full of many events. In April, I am giving a keynote speech to QUOTA international, which I am humbled to do. It is the longest speech I have ever done. I just hope I can share a message of inspiration and motivation to make a change in the world.

Last summer, I did a short, three-day ride to Altoona PA to attend a minor-league baseball game. A lot of the riding was in the Appalachian foothills, which is always challenging. We had more than 200 people come out in support, and it helped to galvanize a new Hearing Loss Association chapter in Altoona. Due to the success of that event, I will be returning to Altoona for a game on May 20.

In June I am driving to Durham and Atlanta for another couple of events. Dr. Howard Francis, one of the biggest Jacob’s Ride supporters, has moved from Johns Hopkins to Duke. We are hoping to have a coming-together of the hearing loss community there at a Durham Bulls baseball game. I am also looking forward to seeing Med-El’s US headquarters, also in Durham.

From Durham, I will head to Atlanta to see a brand-new ballpark. We had a very successful event at Turner Field about 4 years ago, and we are hoping to replicate that success. I will not be riding my bike. The decision was difficult since I have historically ridden my bicycle to these sorts of things. But after a lot of deliberation, I will be happier by doing these events faster. I will be more energized and can spend more time with people rather than in isolation on the road.

In other news, I’m still working hard at trying to balance a 40-hour work week with a social life and trying to make changes to the website and transition Jacob’s Ride into a resource center and information hub. I wish I had another 40 hours a week to spare, I really do. Sometime, the biggest resentment in my life is that the Earth spins around so fast and there are not enough hours in the day! Just grateful to spend a lot of time making connections and seeing long-time supporters this summer and not having to trudge on the bicycle.

Choosing Direction

In December, I graduated from University of Maryland University College with a degree in business administration. At the same time, my job at Whole Foods has changed slightly. In addition to being a cook, I also became trained at being a buyer for the department, which is a much different job. It’s nice to get away from the cooking (and customers) at least two times a week.

I owe a lot to John Niparko, my CI surgeon, for getting that degree. I had not attended school for about two years when I began Jacob’s Ride in 2013. After the ride, Niparko implored me to re-enter school. He was the type of person who does not like to listen to excuses or rationalizations, so he surprised me in the form a personal check to subsidize the cost of my tuition for two semesters. That began the three-year return to school.

Now that I’m out of school, I am still working at Whole Foods, and I am enjoying friendships, fellowship, going out to dinner, dancing lessons, powerlifting, and a score of activities. My life has never felt fuller. It’s been challenging to spend time on Jacob’s Ride. I’ve been asking myself hard questions about what type of work/life balance is good for me and whether this should be treated as a job (full or part-time) or as a calling. The answers have been coming to me slowly.

An idea that has been manifested through my experience at Hopkins for what I would like to transition Jacob’s Ride into is this: a hub for parents to become informed on the truths and realities of cochlear implants. And armed with information, I would like Jacob’s Ride to provide a toolkit to parents so that that they can properly advocate for the child to get the rehab or the services that they need. This would be primarily online-based.

Feedback is always welcomed.

Internship at Johns Hopkins

It’s been a long time since I’ve written anything at all for this blog, but it’s been a very busy time. I have kept many supporters informed of what has been happening via the Facebook page; I’ve also related a lot in personal discussions with other, more intimate friends.

The biggest thing that has happened since I’ve last written is that I did a 10-week “internship” at Hopkins, in which I spent one day a week learning almost everything I possibly could about all aspects of cochlear implantation. The program was designed by Dr. Howard Francis (Vice Director, Department of Otolaryngology) and Debra Bervinchak (Speech and Language Pathology, Rehabilitation Therapy).

Personally, it was sometimes tiring because I was taking a full-time course load in my final semester and I was working 4 days a week as well. But the experiences I enjoyed at Hopkins will shape the future of my life forever.

I saw all aspects of implantation including, but not limited to:

1. Scared and confused people or parents considering an implant in their initial evaluation.

2. Device discussions – patients or parents choosing which of the three companies’ implants to use.

3. Otolaryngological consultations (“get vaccinations up to date!”)

4. Activation days! I found out that those amazing YouTube tear-jerking videos are usually divorced from the truth. Just keeping the magnet attached to a two-year old’s head is difficult when the child does not want to cooperate.

5. Actual surgery. I wish I got a picture of me in scrubs with Dr. Howard Francis. I’m not too squeamish of a person, but it was a longer process than I expected. What made it even more educational was that it was one of the first times a new electrode array/sheath surgical assistive device was being used, so there were representatives from Cochlear America in the operating room as well.

However, the most valuable education I received was in the form of the bulk of the time spent; reprogramming the devices and the post-implant rehabilitation. In those rooms, I learned what the patients were struggling with, the types of questions being asked, and the miracle that was taking place in many people’s lives. The rehabilitation component of implantation is so important, and it seems to be overlooked in a lot of the dialogue regarding implants.  What I learned changed my views for what I can do to be useful. I’ll be keeping this blog going with a post or two per week, and I am hoping to collect feedback as well as pertinent information regarding personal experiences.

I want to finish this post with a long-overdue thanks to the entire staff at Johns Hopkins Listening Center. Not only did I learn a lot just from watching them do their jobs, they would often spend time with me after the patient had left, pointing out aspects of that patient or case, so that I was always gleaming information. Over 10 weeks, I went to more than a dozen each of reprogrammings and rehabilitation sessions. Even though I was seeing essentially the same thing more than once, there was always so much more to learn due the differences in each patient’s individual story and experience.

I also loved meeting all the patients. There is truly a bond between those who have a hearing loss!

Special thanks to:

Deb Bervinchak
Steve Bowditch
Courtney Carver
Kristin Ceh
Howard Francis
Debbie Grammer
Barbara Gottschalk
Andrea Marlowe
Dawn Marsiglia
Charles Della Santina