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.
Ephphatha is based on journal entries that the author, Christopher’s father, kept about Christopher’s life with hearing loss. It begins with the shock of the deafness diagnosis, followed by attempts at using hearing aids and the difficult decision to try a cochlear implant, which was still a relatively untested technology at that time. Despite an unfortunate complication with the surgery, the CI was a game changer for Christopher, allowing him to attend mainstream school, learn to speak well, and become the man he is today.
The book carries on through Christopher’s school years, chronicling the difficulties he faced finding friends that could understand and adapt to his communication challenges and the solace he found through his prowess on the basketball court.
The book title, Ephphatha, means to be opened, and it is a fitting one as each step of the journey required Christopher and his family to be open to new experiences, battles brought on by stigma and stereotype, and changing expectations. From his incredible success on the basketball court to his consistent honor roll performance, Christopher demonstrated the power of self-advocacy and the importance of family support to living a successful life despite the challenges of hearing loss / deafness.
My favorite quote from the book is the answer that teenage Christopher gives when he is asked to name one of his biggest accomplishments. He replied, “I want to look back and say that through all of my hard work, I was able to talk pretty well and be like everybody else,” showing that despite the challenges he needed to overcome, Christopher simply wanted what all teenagers want — acceptance and love. In the end, he achieves both.
Christopher was recently selected to speak at his graduation from Cornell Tech. Click here to watch the captioned video of his talk, where he discusses the difficulties he faced growing up deaf and encourages others to use their own personal stories of challenge to inspire others. It is worth a listen.
Other Wonderful Books About Hearing Loss
If you enjoy reading books about hearing loss, here are three others I have reviewed in the last few years. Please share your favorites in the comments.
Smart Hearing — Strategies, Skills and Resources for Living Better with Hearing Loss by Katherine Bouton
Living Better With Hearing Loss by Katherine Bouton
The Way I Hear It by Gael Hannan
Readers, do you have a hearing loss book that you recommend?
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Beautiful story.
What language is the title from?
A google search says it is the Greek form of a Syro-Chaldaic or Aramaic word, meaning “Be opened.” Thanks for your question.
I appreciate your question and it is Aramaic.
Dear Shari,
This past Sunday I visited a church I was curious about. When I walked in, the worship band was already performing and I noticed the music was extremely loud. It mirrored a rock concert. This is nothing new to me I just wasn’t mentally prepared for some reason. My body language sent a clear message of discomfort and surprise. A greeter for the church asked if I was OK and I explained the music was very loud. She said “I am sorry, we ran out of ear plugs.” I replied: “I couldn’t wear them anyway as I wear hearing aids”. She exclaimed: “Well can’t you just turn the volume down in your hearing aid?!” I honestly found her solution to be extremely rude. I said “no as it wouldn’t solve my problem. I also suffer from tinnitus and the volume of the music, and the vibration would actually make it worse. I will just stand outside until the worship is over.” After being outside for about 30 seconds another woman came out and said, “Why don’t you just take your hearing aides out!” I said, no thank you. I walk back inside and another woman came over to me and pointed out she wears hearing aides too. She then said, just take them out!”
I was absolutely mortified. It proved to me that we have a very long way to go to create awareness among the hearing, that the hearing impaired world doesn’t need your stupid, insensitive, thoughtless solutions.
Why couldn’t they just allow me 2 solve my problem myself? Did they have good intentions? Probably. If I had a prosthetic arm that wasn’t ideal for an environment, would I be asked to remove my arm? NO! Asking me to remove my hearing aid is like asking me to remove a body part. I am so attached to them, they rescue me 75% of the time. I pray one day people could be a lot more sensitive to people who are living life with a disability and need to make their own decisions about what we’re going to do in our environment.
Angela Kubisky
I am surprised the music was so loud in the first place. Hearing loss is difficult for people to understand. I am glad you stuck to your convictions and found your own solutions. Thanks for sharing this story with us.
You should always carry musician’s ear plugs with you. You can buy them at any music store.
Using these will prevent further damage to your cochlea…inner ear..,hair cells.
Loss of inner hair cells, results in hearing loss..but, these inner hair cells also serve as a buffer, against loud, painful shocks, that travel to the 8th cranial nerve, in the brain.
Like most people with sensorineural hearing loss, you probably have recruitment…or hyperacusis.
Whenever you are around loud sound, take out your hearing aids and insert the ear plugs.
The grating, painful sensation will stop, plus, you will prevent further damage to those hair cells.
Thank you for this recommendation. I have just ordered the book, and look forward to reading it. I have watched videos of Chris Caulfield online, and he is very impressive. His speech, as he notes, is excellent, as are his basketball skills. But most of all, he seems like a terrific young man with wonderful perspective. I expect great things from him, and hope that his caption glasses become a reality.
Jon
Me too! Enjoy the book!
The note above, was in response to Angela’s note.
Thank you for the recommendation, Shari! I am wondering how you pronounce Ephphatha – Ef fatha?
I’d like to recommend a book that is not about hearing loss per se, but the first-person protagonist has hearing loss and it is evident that the novelist who wrote the book speaks from his own experience. It is entertaining, humorous, knowledgeable, and I learned some new things relating to hearing loss from it, for example I had never heard of the “Lombardy effect” before but I have experienced it many times – it is the crescendo of the sound of talking in a crowded room where people talk louder and louder in order to be heard thus making it harder and harder to be heard. The book is “Deaf Sentence” by David Lodge.
Betty, I second your comments about Deaf Sentence. I read it several years ago and loved it.
Jon
Thank you for the recommendation! I will check it out.
Good morning Betty! Might I say that you have pronounced it perfectly:)
Ephphatha comes from the Bible Mark 7:34. It was said by Jesus after healing a man who was deaf and mute.
Interesting. Thanks for sharing the information.