What is the extent of your hearing loss?
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 loss?
How long have you been adapting?
I went suddenly deaf in December 2017. I have been adapting for two years.
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. It has been two years, and I have not had success with the CI yet. I am unable to recognize speech. I may still have inflammation in my inner ears because of my RP. We hope that the swelling will subside with immunosuppressants and that I will be able to hear better with my CI in the future.
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 lip reading, some tones from my CI, and a speech-to-text app.
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.
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. Two years later, I am much better. I am able to hike over some strenuous terrain.
What is your profession?
I work as a mental performance consultant, mostly helping people achieve better performance in sport. Also, my partner and I
started NeoHear.com to help others like me.
What are some challenges you have faced because of your hearing loss?
Group conversations are difficult. I miss being able to easily chat with people at parties and just randomly on the walking path or in the Uber.
I went deaf two years ago, when my nephew was one-and-a-half years old. I wish that I could hear his voice as he speaks more and more. He is learning some sign language.
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 do not say, “Never mind.”
Please do not shush me!
Take advantage of the technology out there. There are several resources on NeoHear.com.
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.
Something you would like others to know?
Many of us who have hearing challenges also have other medical challenges. For example, my rare autoimmune disease makes me very tired and I get sick easily and stay sick for a long time. Also, I have a vestibular disorder, and have been working hard to regain my balance. Deafness is just part of the challenge.