One of the reasons hearing loss is so frustrating is because we cannot control it. When entering a new situation, we don’t know what listening challenges we will meet. We can’t figure out in advance if an important speaker will be a mumbler or worse yet a mumbler with a voice in your hardest to hear frequencies. We have little authority over our hearing loss, but what we can control is how we react to it and what steps we take to counteract it. We take back the power when we learn to find comfort with discomfort.
I enjoy reading inspiring stories about people with hearing loss, especially tales like the one in Ephphatha, a new book by Dr. Thomas Caulfield. The book shares the courageous journey of his son Christopher, born profoundly deaf, and his struggles to combat and overcome this disability through much of his young life. There were many ups and downs, but through hard work, cochlear implant (CI) technology, perseverance and tremendous familial support, Christopher matures into an intelligent, kind, and purposeful man. It is uplifting to go on this adventure with him.
Today, Christopher Caulfield is a tremendous advocate for the disability community, including people who are deaf or hard of hearing. Regular readers of this blog might remember him as one of the Cornell Tech students working on captioning glasses that I discuss in a prior post. This summer, Christopher will be joining Microsoft as a Program Manager within the Cloud and Artificial Intelligence group. Over time, he hopes to get involved in Microsoft’s accessibility initiatives for people with hearing loss.
Hearing Loss Association of America’s (HLAA) 2019 Convention is only three weeks away. Will you be there? This year the convention is in Rochester, NY, home to Rochester Institute of Technology (RIT) which boasts “an internationally recognized education for deaf and hard-of-hearing students.” Partially because of RIT, Rochester is a hub of activity for the deaf community and incredibly welcoming for people with hearing loss. It even has a local yoga studio that offers ASL-interpreted yoga classes every Saturday morning. And the airport is looped!
This will be my fifth convention. Each year I am thrilled to meet, mingle with and expand my hearing loss community. Usually I come away with at least one new hearing loss friend and a handful of tricks and tips I can use to make the world more accessible. All sessions are looped and have CART (communication access real-time translation), so you won’t miss a word. I’ve never attended a conference that is so accessible for people with hearing loss.
I am pleased to share my hearing loss story and tips on the newly launched site — FindHearing.com. See an excerpt below.
My left ear has been acting up — increased pressure from seasonal allergies led to excess fluid, making my hearing aid unwearable for a few days until my ear dries out. It is a frustrating situation — I can’t hear on one side so I feel lopsided and out-of the-flow. It is hard to tell where sounds originate and the constant tinnitus in my hearing-aid-less-ear is a nuisance. Thank goodness this situation is only temporary.
Among the many challenges, the worst part is feeling less self-assured. At my yoga studio this morning, I briefly greeted my fellow students, but quickly retreated into a pre-class savasana to avoid conversation. I thought about cancelling lunch with a friend, but decided to fess up about being down one ear today instead. I feel low-energy, shy, and less poised. My self-confidence has taken a dip.
I am excited to announce the publication of my first e-book — “A Primer on Person-Centered Care From the Patient’s Perspective!” In it I share the fits and starts of the early days of my hearing loss journey and how person-centered care could have made my transition from hearing to hearing loss much easier.
The e-book shares my personal hearing loss journey, examines some of my experiences with audiologists over the years, and lays out my formula for person-centered care from the patient perspective. It also provides suggestions for how audiologists can incorporate each component into their daily interactions with patients.