Recently, I was reading entries on the Advanced Bionics (AB) Facebook page. A wife was pleading for help for her husband, who was giving up on using his processor. He had no one to talk to and wasn’t prepared for the issues he was having.
Someone mentioned to the woman that her husband should speak to a cochlear implant mentor to get ideas and maybe find some answers. The wife was totally unaware of mentors. She asked if they worked for AB and how she and her husband might find one in their area. This brings me to the subject of my blog today.
I have been a CI mentor for about six years now. I don’t work for AB, but I do have an AB cochlear implant. I received my implant in November 2013 on my left side and have been wearing the Naída Q70 and now the Q90 while I await my upgrade to the latest and greatest Marvel CI. I have had the opportunity to test the Marvels and I can’t wait to upgrade. And no, I do not receive any tangible compensation from AB.
My mentorship, if you want to call it that, started while I was attending my own appointments for speech therapy, CI processor mappings, and testing at Washington University in St. Louis, MO. My audiologist would ask me to speak to a possible candidate who might be there for their evaluation, were hesitant to have the surgery, or just had questions about my hearing journey and experience with the CI.
Once I was no longer officially part of the Washington University study program, my Cochlear Implant Consumer Specialist (CICS) from AB asked if I would be interested in continuing being a mentor. I agreed, and she started referring other CI recipients and candidates to talk to me. After all that my family and I endured, especially my wife, with my hearing issues, I felt it was important to talk to these individuals. I wanted to let them know that there is hope.
Once we get connected, these meetings with recipients or candidates have been either in person or via phone calls, emails, text messages, the Advanced Bionics Facebook group, or HearingJourney.com. I typically let the other person decide what’s the best way to communicate, since some people, depending on their hearing situation, do not like using the phone. Also, I haven’t found a candidate or recipient who has been comfortable with a Zoom or FaceTime meeting with captioning yet.
We feel that we can help by sharing our lived experiences with these individuals.
With so much missing or misleading information out there on the Internet about cochlear implants, my wife and I felt it was important that these individuals have an avenue for obtaining the correct information. Many people understandably feel that information directly from cochlear implant companies may be biased. And their own hearing care professionals often only have a finite amount of time to educate them and answer all their questions. That’s why we feel that we can help by sharing our lived experiences with these individuals.
The questions that I’ve been asked cover a broad spectrum of things. They range in topic from my personal hearing journey to “Will they shave my head for the surgery?” When speaking with candidates considering a cochlear implant, the three most commonly asked questions are “Did it work for you?” “Will I get my hearing back,” and “How long does it take before I can understand family or people again?”
These are all great questions, but I can’t answer these for them. I can only answer what it’s been like for me. But in answering these questions, I try to make them understand two things: First, hearing with a CI is a marathon which involves continued practice and exercise to retrain the brain to recognize different sounds. Secondly, it will never be the same as the hearing that’s been lost. But with continued practice, it can be worlds better than how they’re hearing now.
Some of the other questions I can speak to relate to the logistical aspects of getting a cochlear implant. A lot of people never realized that it takes multiple steps involving doctors, insurance companies, etc. to get approval for the implant. Any one of these steps can hold up the process.
I have met with candidates in Oklahoma, Kansas, Missouri and Illinois. I have met their spouses or family members, as has my wife. My wife strongly believes that it’s important for these conversations and interaction to also include a spouse or family member.
When there is hearing loss, not only is the patient affected, but also the people closest to them. And they will continue to be a significant part of the journey towards better hearing. So, it’s important to include them in the process. Furthermore, when these spouses meet and speak with my wife, they also feel heard, supported, and encouraged.
I have mentored older adults and I have also spoken to younger people looking for answers. I have even talked to a group of 10-year-old boys in a YMCA locker room who asked me a bunch of questions after spotting my processor on the side of my head. I was considered cool after the conversation, because they decided that I’m actually “bionic.”
When these spouses meet and speak with my wife, they also feel heard, supported, and encouraged.
Some of the people I have mentored still reach out from time to time. Most have gotten their implant, some received another brand of implant because their local surgeon only works with a certain manufacturer. Most join the AB Facebook group and I can follow them.
Recently, I spoke to a woman in Washington with long hair and small ears who was having a hard time keeping her processor on her ear. I shared with her that I have heard that toupee tape works really well with holding the processor to the side of the head. She called me again and thanked me for the solution. We talked for an hour about her other concerns on topics ranging from CI accessories to TSA security checks during travel.
I feel it’s an honor to speak to all of these people. I know that while my results were good, everyone’s situation is a little different, and they might not have the same results that I did, or they may have better results than me. But I can share my own experience and my learnings, and also serve in a positive and supportive role for those going through the same challenging process that my family and I went through ourselves.
For those of you considering a cochlear implant for yourself, a loved one, or a child, you should know that you are not alone out there. There are people who are willing to listen, share, and possibly give you the answer that you’ve been looking for.
The mentor that you may be paired with can be a multitude of things from a source of tips that can help you or an avenue that helps you find the correct answers to your questions. Or they may be just a friendly ear who will listen to your concerns and frustrations.
There are people that are willing to listen, share, and possibly give you the answer that you’ve been looking for.
Ask your audiologist or your CICS to provide you with the name of a mentor. If your CICS doesn’t have a local mentor, they can connect you to a mentor that may have a similar hearing history to yours. For example, if you’re a parent of a child who’s recently been diagnosed with profound hearing loss, your CICS can connect you with other parents whose child hears with cochlear implants. Or if you’ve been told you’ve “maxed out” of hearing aids, you may have the opportunity to speak with someone who’s gone through the same thing. Please never suffer alone in silence.