In Honor of International CI Day, Two Personal Stories of Success
To celebrate International Cochlear Implant Day on February 25, we asked two long-time Hearing Loss Association of America (HLAA) members and cochlear implant (CI) users to share their personal stories with us.
Now 53, Lisa was diagnosed with hearing loss at age 20 while attending UCLA, which turned her whole life upside-down.
“I was just about to graduate from college, which should be a time to be excited about your future and feel as if the world is yours to discover,” she says. “My hearing loss made me want to withdraw from that world and affected every area of my life. I felt incompetent to find a good job, date or even socialize with my friends. After graduation, I was hired at the company where my sister worked, in a computer production role that didn’t require much interaction with people; that became a 20+ year career.”
Although Lisa wore hearing aids for the first two decades after her diagnosis, she still felt challenged to communicate and connect with others—until she discovered the local HLAA Chapter in Los Angeles. With the support of her “hearing loss tribe,” she was soon gaining confidence, volunteering for multiple leadership roles, including chapter president, and meeting the man who would eventually become her husband (also a CI user).
Inspired and encouraged by other HLAA members who have cochlear implants, Lisa chose to get her CI in 2010, while continuing to wear a hearing aid in the other ear. After a rocky adjustment period, today she is an enthusiastic advocate of this technology.
“My CI has made a such an enormous difference in my life. I can hear sounds like birds chirping and understand speech better than I ever could have imagined when I wore two hearing aids—even if the person is not facing me. Amazingly, I am now addicted to podcasts and audiobooks! Six years ago, I made a huge mid-life, cross-country career change, to join the press team of a large biomedical research agency in the Washington, DC area. During the pandemic, in October 2020, I married my fiancé Ken (who also has a hearing loss) virtually—we were together outdoors at a favorite park, while the remotely located officiant streamed our wedding ceremony via WebEx directly into our Made for iPhone compatible devices!
“I honestly don’t think I would have been able to do any of these things—at least not as successfully—if I didn’t have a CI. It has enabled me to communicate with ease at work, regain self-confidence and believe in myself again.”
Lisa currently serves on the steering committees of both the HLAA District of Columbia Chapter and the HLAA Montgomery County (MD) Chapter, and is a member of the HLAA Employment Task Force. In 2018 she received the Spirit of HLAA Award at the HLAA Convention in Minneapolis, MN.
Malik B. El-Amin
Los Angeles, CA
Diagnosed with hearing loss at age 28, Malik was prescribed hearing aids immediately; they arrived within a month on his 29th birthday. While he was able to stream phone conversations from his desk phone into his hearing aids using a special device, he also relied on call captioning at work and subtitles for TV and movie viewing.
Malik shares, “The impact of losing my hearing was substantial, across every facet of my life. As my hearing got worse and worse, it became increasingly difficult to get hired as an actor. Casting directors and others were afraid to cast the guy wearing the hearing aids. That experience led me to begin my career as a director and producer—to play a role in choosing what stories we tell, rather than auditioning to help tell someone else’s story.”
“In my corporate career, my hearing loss became central to my identity, as every conference call began with a disclaimer about the assistive technology I was using to help me follow the conversation. Later, I learned that I was passed up for a promotion before receiving my cochlear implant.
“I also struggled with dating, in terms of my own confidence and self-worth, as well as in the reactions of some women who clearly had issues with my hearing aids or were unwilling to make the adjustments necessary for good communication. Then a staff member at the Greater Los Angeles Agency on Deafness (GLAD) told me, ‘If someone doesn’t want to date you because of your hearing loss, they don’t deserve you. Not the other way around.’ This profoundly changed my outlook and helped me to recover the sense that I am worthy, just as I am. “
Receiving his cochlear implant 13 years ago turned Malik’s life around and he has thrived both personally and professionally since then. His speech comprehension improved dramatically and is near perfect in a quiet environment.
He explains, “It’s been like night and day for me since getting my CI. I had opportunities open up in my career, and I became more social again. I hadn’t realized how many relationships had withered simply due to the effort of talking on the phone.”
“Through my hearing loss journey, the HLAA Los Angeles Chapter was a godsend. I found people who instantly understood my experiences and shared incredible knowledge and tips to help me manage. This social support was critical for me.” Malik spent several years serving as advocacy chair and president of the HLAA Los Angeles Chapter.
Proceed With Caution
Both CI users suggest that prospective candidates take their time before making the decision to receive a cochlear implant.
“It is a surgery, so there are risks to be considered and weighed,” explains Malik, “and you need to manage expectations regarding the results. While my experience has been incredible, not everyone has success with implantation. So, I’d say consider the risks, then do it anyway, because the upside can be life changing.”
Likewise, Lisa advises, “Do your research: talk to CI users, who are usually happy to share their experiences; look for a CI audiologist and surgeon whom you trust, feel comfortable with, and who will listen to your concerns through the entire process. It can take a year or more of rehabilitation to adjust to hearing with a CI—in my case, it took even longer. Candidates should also understand that, while CIs make a huge difference, they will not restore your normal hearing; for instance, I still struggle to hear in noisy environments.
“Finally, joining a group like HLAA can help you get support, information and resources at any stage in your hearing loss journey!”
Celebrating Cochlear Implants
International Cochlear Implant Day is an annual day of recognition each February 25 for the individuals, families, and organizations that support CIs and their recipients with severe hearing loss who benefit from them. According to the European Association of Cochlear Implant Users (EUROCIU), the theme for 2023 is: “Proud to be me. Hear me now.”
First celebrated in 2009 by a group of CI recipients in Spain to mark the anniversary of the earliest cochlear implantation by French doctors Charles Eyries and André Djourno in 1957, today it is observed globally to raise awareness of CIs and promote the progress that has been made in this field.
What is a Cochlear Implant?
CIs are implanted medical devices that help some people with significant deafness to hear by electrically stimulating the inner ear, or cochlea. Since the modern CI technology was introduced in the early 1980s, it has become one of the most successful and widely used methods of treating severe hearing loss. In collaboration with other organizations, HLAA advocates for increased access to these devices, which are currently used by more than 750,000 people worldwide and growing. The Research Symposium at the HLAA 2022 Convention featured new CI technology, and videos are now available here.
Recent changes in Medicare coverage requirements for CIs, which require surgical implantation, is likely to mean expanded access to the devices, as the HLAA magazine, Hearing Life recently reported.
Happy Second Birthday to CIICA!
The Cochlear Implant International Community of Action (CIICA) was established on February 25, 2021, to promote and support the use of cochlear implants. HLAA Executive Director Barbara Kelley is a member of the steering committee and HLAA Director of Public Policy Lise Hamlin, who is a CI user, is a member of the website development committee.
To celebrate the organization’s second birthday together with International CI Day, CIICA is hosting a live global online event on February 23, 2023: Delivering Person and Family Centered Care in CI Services. Moderated by Barbara Kelley, this Zoom event will feature speakers from around the world with English captioning (other languages by request). Register here.
If you or someone you know has a hearing loss, visit hearingloss.org for resources and to find a local chapter, or a Walk4Hearing near you.
For questions, contact HLAA at firstname.lastname@example.org.
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