Deafinitely Thriving

Last Wednesday, I had the amazing opportunity to share my experience with cochlear implants with a Northeastern University graduate audiology class. One of my friends, Nicole Pendleton, had reached out to deaf CI-user friends on Facebook asking for volunteers willing to share their personal stories to a bunch of students studying to become audiologists. Jessica Chaikof, another of one of my friends, and I quickly answered yes!

I love sharing my personal experiences because I get the chance to spread awareness about Cochlear Implants, which have tremendously improved my quality of life by essentially allowing me to hear. Many people are not familiar with cochlear implants. It’s very much a privilege to educate others about how extremely helpful the devices are.

When I arrived at Northeastern, I quickly caught up with Nikki and Jessica. We hadn’t seen each other in two years! Nikki is currently finishing up her senior year at Bridgewater State as a double major in communication disorders and psychology, while Jessica is finishing up her freshman year at Wheaton and is leaning towards becoming a chemistry major.

Dr. Lydia Gregoret, who runs the class, greeted us upon arrival and showed us our seats in the front of the classroom. We had a microphone and a CART (Communication Access Realtime Translator) provider, who set up two computers on our table, so we could see everything Dr. Gregoret and the students were either saying or asking. The accommodations were very helpful in keeping the discussion and communication flowing fluidly.

Dr. Gregoret had asked us to speak to her class because she wanted her students to gain real life insight as to how cochlear implants work, as well as recognize how impactful and successful CIs have been in mine, Nikki’s, and Jessica’s lives. An audiologist by definition is a healthcare professional who is trained to evaluate hearing loss and related disorders, including balance (vestibular) disorders and tinnitus (ringing in the ears). They perform a variety of tests and procedures to assess hearing and balance function, and they also help fit their patients with hearing aids or cochlear implants.

Personally, I go to see my audiologist every few months for a “MAP”. People seriously get confused when I tell them this because they think I’m going to see someone for an actual, legitimate map. As funny as it is, that’s not true. A MAP is essentially a reprogramming of the sound levels in my CI processors. I usually know I need to get one when I notice my speech becoming “slushy”. I’ll often feel like I can’t talk because there is lots of air trapped in my mouth. But, literally, after getting a MAP, I always feel like my mouth has been “cleared”, almost as if your sinuses have been cleared and you can breathe again, except in my situation, I can finally freaking talk!!

 Getting back to my speaking engagement.

Despite finishing a long day of classes and running on only three hours of sleep, I was ready and eager to talk. Nikki, Jessica, and I introduced ourselves, shared what degree of hearing loss we have, and what colleges we attend, as well as the majors we are studying. Dr. Gregoret then started asking as questions about our own individual experiences with cochlear implants. Since my friends and I are both bilateral CI users, we shared our experiences of going through two surgeries, implantation failures, and speech therapy. Dr. Gregoret also opened up the opportunity for audiology students to jump in and ask questions if they had any. At first, the class was a bit hesitant, probably because it was 5:30 in the afternoon, and they had just finished taking a quiz prior to our visit. Nonetheless, everyone quickly settled in and started asking us questions:

• Did you enjoy going to speech therapy when you were younger?
  • We all answered “no”. Who wants to sit around learning how to identify words on a gorgeous, warm Friday afternoon?! However, speech therapy absolutely paid off in the long run. Nikki, Jessica, and I wouldn’t be able to talk nearly as well as we do now if we had neglected to go.
• How has your family been involved in terms of support? Or how to do they treat you?
  • We shared that our families treat us like any other person, and are always there for us. They have been incredibly supportive and patient with us in our cochlear implant journey.
• Can you (me) go more in depth about not having cochleas?
  • I had mentioned the irony of me having cochlear implants despite not having cochleas. I told the student that my doctor, Dr. Noel Cohen at NYU, managed to place my implants in a certain spot in my common cavities (the space where my cochleas would have been) that could stimulate the auditory fibers that could transmit sounds.
• If you could change one thing about cochlear implants, what would you change?
  • This was a very interesting question. Jessica and I couldn’t decide on one thing. We’d either like to have water-proof processors (this was especially relevant to me, or rather resonated with me, since I was on the swim team all throughout high school, but literally had to compete in utter silence), or we’d like to have a completely internal implant, where we wouldn’t have the external burden of the processor and coil. I mentioned that I would love this because wearing processors, glasses, and a headband puts enough strain on my tiny ears. Also, a completely internal implant would rid the burdens of having external parts get into the way of simple acts. For instance, the coil can get in my way when I try to put my hair up. A simple two-second act can take up to five minutes for me if I can’t position my coil under or over strands of hair where it won’t fall off.
• Do you get a “shock” when you turn on your processors?
  • We don’t receive “shocks” like electrical shocks when we turn on our processors…far from it. For me, it’s like someone turns on the lights. There’s this “ahhhh” moment that uplifts me and I can suddenly hear.
• What kind of accommodations did you have in high school and what do you use currently?
  • How have they been helpful to you?
• Do you have any support groups on campus?
• How has the experience been “starting over” in college?
• What’s your relationship with your audiologist and have they been helpful for you?

I had a great time sharing my experiences because these students are literally the future of audiology. If Jessica, Nikki, and I can help enhance their education by sharing our personal, unique stories, I am honored. I also feel empowered knowing I can help a potential, future audiologist understand CI users even more. In reality, many more children will be born deaf, so we will need more engaged, understanding, and reliable audiologists who can program our processors to suitable, comfortable sound levels that help improve the quality of our lives.

Being deaf isn’t easy, but an audiologist has that ability to improve our lives simply by knowing how to adjust our sounds levels. Their impact is extraordinary.