Building a community

[Mary Beth]

Growing up with progressive hearing loss often made me feel different from my friends.  The only people I knew with hearing aids were either born with a hearing loss or seniors who were experiencing age related hearing loss.  As my hearing loss progressed and I began to learn sign language I often felt straddled between the hearing community and the signing Deaf community.  I did not fit in either group.  One of the unexpected parts of my cochlear implant journey has been finding a community.  The community of CI users is absolutely amazing!  It is full of kind, helpful, fun and supportive people.  Each of our journeys is unique but the shared CI experience draws us together.  Spending time with other CI users is one of my favorite things to do.

I enjoy connecting with other CI users in many ways.

in person (my favorite)

video chats

forums/social media

email exchanges

Do you feel like you belong to a CI community?  What are your favorite ways to connect with other CI users? 

[Michael S]

I lost my hearing due to spinal meningitis when I was two years old. I became deaf in my right ear and had moderate to severe hearing loss in my left ear. I had been wearing a hearing aid in my left ear since I was six. Although I was taught sign language, I had just enough hearing to be placed in a mainstream school, so I never became fluent in sign language. As a result, I have always felt caught between the hearing community and the signing Deaf community.

As my hearing in my left ear gradually worsened, I became concerned. That is when I started looking into cochlear implants. I became involved in discussions with several cochlear implant users and participated in peer discussion groups.

I am now a bilateral cochlear implant user and feel like I belong to a community, a cochlear implant community.   I agree with @Mary Beth; the community of CI users is absolutely amazing!

[Lauren]

I had a poor start to life. Around the age of 3 my parents had doctors test me for many many things. Ironically I passed the hearing test with flying colors. By the age of 6 it was discovered that I had significant bilateral hearing loss. I was quickly fitted for hearing aids, FM system for school, and taught sign language. The whole deal. I did qualify for CIs right away but my parents were apprehensive on the surgery and didn’t want to force them on me. They did ask but I wasn’t very happy so refused to even consider them. My hearing progressively got worse until finally in 2021 I could no longer ignore it. Asked for CIs and things moved quickly from there.

As for community, I was introduced to HearPeers early on. Did join right away but it was a few months later that I started participating. First CI user I spoke to was actually @Mary Beth. The first engagement manager suggested an upcoming meeting as it was for candidates and to my surprise I was the only candidate in the virtual meeting. 

Since then I have been fortunate to (virtually) meet many other kind, caring, helpful, etc people with CIs living in all corners of the world. All sharing their stories, discussing CI topics, and helping troubleshoot issues as they come up. Mostly I meet virtually or via email as I’m in Alaska, so that’s why I was so willing to fly to Portland for a chance for an in person meeting earlier this month. I’d be willing to travel anywhere actually!

[Mary Beth]

I remember that meeting very well @Lauren  smile

[Tim]

This is an interesting topic. 

I feel a part of 5 CI communities that are important to me.  In order of my first "meaningful engagement". 

Community #1:  Hearpeers: I remember when I first tried going the CI route in 2016.  I joined the online communities for all 3 companies and posted a few messages/questions then.  After a losing a 6 month insurance battle, I went the bone conduction route.  In 2022, I tried again and got approved.  I went back to all three communities. 

The blue community seemed very "quiet".  My account worked but there didn't seem to be a good community there.

The yellow community gave an error indicating a server problem.  I kept trying periodically for about a week or two before realizing that they had basically discontinued that community without doing the equivalent of leaving a "forwarding" message.  The new community's sign up questions left no option for people that were considering different devices. Maybe their community is good once you get behind the wall of signing up but I wasn't willing to answer the enrollment questions falsely to find out.

Hearpeers was still active.  My posts from 2016 were still there and a certain user that had joined just a few months before me was going strong, 14000 posts helping people out, answering questions, posting news, and so much more.  Of course it won't be a surprise, it was @Mary Beth!  The community was not just open but vibrant and had thoughtful, caring, and frank discussions.  It welcomed people from all parts of the hearing journey and provided a very rich discussion about how to deal with our CIs. I'm impressed that the Med-El allows discussions of both positives and negatives.  The result is that I think the Hearpeers community may be one of the most important positive factors for selecting Med-El and have said this to several people that were making their device selection.  I hope Med-El doesn't change policies and risk killing their golden goose. 

Community #2: Mary Beth's Monthly Google Meet: This is awesome and a great chance to meet and here from people as well as to get answers to questions.  It is so good that I'm happy to set my alarm for 6 AM on Sunday, ten months a year!  I try to have enough coffee to contribute productively but don't always succeed but really appreciate @Mary Beth hosting this and keeping the conversation going.  Creating an agenda and patiently helping everyone participate.  As a teacher myself that has been doing some online classes or meetings for over 6 years, I'm very impressed with how well she runs these meetings! 

Community #3: Monthly Zoom for Recent and/or SSD CI users:  After getting my CI, I created a small monthly zoom for people that were in roughly similar stages of the CI journey to just chat and share their experiences.  I called it a "Zoom for recent and/or SSD CI users". It has been going strong, held monthly since February, 2023.  We usually have around 7 or 8 attendees, most of whom have been with us for  over a year so we can share what we are all learning and experiencing.  It isn't meant to be a substitute for Mary Beth's meeting, just a complementary alternative.  Instead of Sunday morning (9 AM ET/6 AM PT), we do a weeknight (5 PM PT/8 PM ET). No time works well for everyone, especially when you are crossing 5 or sometimes 10 time zones like Mary Beth's.  

Community #4:  Discord-Cochlear Implant Community: This is a splinter of the Reddit community of the same name and has many/all the same moderators.  It has topics for each of the 3  communities and social, off-topic areas that are lively too. It is a nice community and several of our Hearpeers members are active there too.  It has a different vibe that is interesting and lively but is not a substitute for the  Hearpeers. 

Community #5:  Oregon Cochlear Implant Interest Group: I've still been missing in-person events though.  A year into my CI journey, I had still only met one CI user, IRL, in-real-life. This Summer I got a chance to meet some others in-person.  There was also a research grant proposal was interesting but would have required a research community too.  The result is that I decided to organize an in-person get together in Portland. I  was able to get a large classroom space for a Saturday afternoon.  Thanks @Scott Murray and Hearpeers for support!

I connected with a few local colleagues including someone who teaches audiology and a CI-wearing research audiologist to be speakers. I figured whether we had 5 or 50 people, it would be just a nice chance to share and create community.  I was delighted that we had 25!  The discussions were great.  I was honored that @Lauren flew in from Alaska to join us!  We are aiming to do it again in January or February! 

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Pre-Covid, in 2016, I remember attending company  events in hotel conference rooms.  I miss those events.

Finding a community and a sense of belonging is critical for everyone.  Each of our hearing journeys is different but it can be hard to meet fellow travelers.  The online communities can help us find traveling companions. 

These interactions sometimes lead to rich in-person meetings. 

• Last night I was at a retirement party for someone and a new CI user that I had met a few months ago was also attending.  We got a chance to talk for a little bit during a lull in the event. 
• Two of our monthly zoom meeting attendees realized that they were practically neighbors and have been getting together in-person regularly!

I started writing my response and once again, realized that it had become a long essay-sorry! 

 

[Mary Beth]

Thanks for your kind words @Tim and I think it is great that you are creating opportunities for video and in person connections as well.

The value of in person connections is difficult to describe.  I hope Med-El US starts offering ways for CI users and those exploring CIs to connect in person. (Without PowerPoint presentations- we are so done with PowerPoint presentations)

[Scott Murray]

On 11/24/2024 at 4:08 PM, Mary Beth said:

Thanks for your kind words @Tim and I think it is great that you are creating opportunities for video and in person connections as well.

The value of in person connections is difficult to describe.  I hope Med-El US starts offering ways for CI users and those exploring CIs to connect in person. (Without PowerPoint presentations- we are so done with PowerPoint presentations)

Thanks MB! I can assure you MED-EL US also shares the desire for in-person events and is working on this very thing