Do you have any hearing?
I am profoundly deaf. I cannot hear anything at all.
How do you identify?
I identify as deaf or late-deafened.
Were you born with hearing?
How long have you been adapting?
I grew up with “perfect” hearing. I went suddenly deaf in December 2017, at age 43.
How did you lose your hearing?
I lost my hearing from viral meningitis and a very rare version of a rare autoimmune disease called relapsing polychondritis (RP). RP primarily involves cartilage tissue becoming inflamed. I was diagnosed with RP ten months after my deafness occurred and after several unrecognized flare-ups.
Do you have a cochlear implant (CI) or wear hearing aids?
How do they work for you?
I got a cochlear implant in January 2018 and was activated in February 2018. I have not had success with the CI yet. I am unable to recognize speech. I do not wear my processor.
How do you communicate?
I am taking a speech reading course and sign language classes. I am mostly surrounded by hearing people who do not know sign language, so I rely on a speech-to-text app and some speechreading. I am teaching my friends and family some simple signs.
Favorite piece of technology?
Google Live Transcribe is the best speech-to-text app if it’s just another person and me. If I am in a group, I prefer that we all use Ava, so that I can tell who is speaking, but it gets difficult to keep up with the conversation if there are more than three people. There is a delay with these apps, so I often come into the conversation too late.
What do you like to do?
What are your hobbies?
I love to be outdoors and exercising. When I went deaf, I also lost my balance. I had trouble walking in a straight line and used walking sticks. Now, I my balance has much improved. I am able to hike over some strenuous terrain and I can run short distance. I like to do yoga and sometimes I paint for fun.
What is your profession?
I work as a mental performance consultant mostly helping people achieve better performance in sports and I also do life coaching, which can help people in all aspects of their lives. Also, my partner and I started NeoHear.com to provide information about deafness and hearing loss.
What are some challenges you have faced because of your hearing loss?
Group conversations are difficult. Sometimes I miss being able to easily chat with people at parties and just randomly on the walking path or in the Uber.
Having suddenly lost my hearing has been an emotional and spiritual journey. There are many everyday challenges, and I am still learning how to interact with the world without an “ability” that I relied on for the majority of my life. The term “hearing loss” makes me uncomfortable, because I have learned so much from my deafness and the people who have helped guide me on my journey – be they deaf or our hearing allies.
Are you a member of any d/Deaf or hard of hearing organizations? Which ones?
I am a member of ALDA (Association of Late-Deafened Adults) and HLAA (Hearing Loss Association of America). I attended the last ALDA conference – learned a lot, met many kind people, and had a great time doing karaoke. I take speech reading classes through HLAA.
Do’s and Don’ts
– Please help me by using Ava, the speech-to-text app I use in groups.
– Please help me by learning some common signs.
– Please do not say, “Never mind.”
– Please do not shush me!
– If I am speaking too loudly, just take your hand and lower it. This signals me to turn the volume down. Volume control is difficult to learn. Please be patient with me.
Take advantage of the technology out there.
Learn and reach out to the community. Take it one day at a time and be patient. You do not have to be an expert at lip-reading or sign language. Respect your challenges and take time to acknowledge your work.