What I’ve learned from living with hearing loss for 40 years
September 19, 2019
How disability advocacy helped me learn self-advocacy
September 23, 2019Book review: ‘On Being Human’ by Jen Pastiloff
Recently, Hearing Like Me started a book club to bring together the hearing loss community, promote deaf authors and discuss common themes around living with hearing loss.
The first book chosen for the book club was “On Being Human: A Memoir of Waking Up, Living Real, and Listening Hard“ by Jennifer Pastiloff.
Book Review: “On Being Human”
“On Being Human” is “an inspirational memoir about how Jennifer Pastiloff’s years of waitressing taught her to seek out unexpected beauty, how hearing loss taught her to listen fiercely, how being vulnerable allowed her to find love, and how imperfections can lead to a life full of wild happiness,” according to Amazon.com.
HearingLikeMe chose this book for its Book Club for the themes around hearing loss. Themes include: how a deaf person views their hearing loss, the shame and stigmas that exists around deafness, and the process of making peace with one’s hearing loss.
Viewing your own deafness
Throughout the book, Pastiloff’s openness and vulnerability allows the reader to be a part of her story.
“I like Jen’s writing style,” says one HLM book club member. “I feel like I am talking to a friend. It is very interesting, but it is more about finding your own way (included when you lose your hearing). I would describe it as ‘You do not have to fit into the (listening) norm to find your happiness.'”
Pastiloff’s writing style is intimate. As a reader, the way she views her deafness made me think about how I have viewed my hearing loss, both in the past and present.
For example, in the past, I made my hearing loss seem as though it was not a big deal. At times it seemed like I viewed my hearing loss from a hearing perspective, believing that was fully a part of the hearing world. Therefore, when Pastiloff said she ignored her deafness until she was 40 years old and completely deaf without hearing aids, I could relate.
Read more: Your first hearing aid: Common questions and what I’ve learned
Addressing shame and stigmas that exist around hearing loss
Pastiloff describes the shame that accompanied her hearing loss. Early in life, she didn’t even know she had hearing loss. In the book, she addresses how teachers would get frustrated with her for not paying attention, which made her feel like she was doing something wrong or not trying hard enough.
This was completely relatable to me, because my hearing loss was also discovered by teachers, when they thought I wasn’t paying attention in school. At a young age, this can make you feel ashamed of your hearing loss. Not receiving compassion from others toward your hidden disability, makes it easy to not show yourself any compassion for your differences.
Read more: What you should know about concentration fatigue
“I wondered why there was such a stigma (in my mind) about hearing aids and hearing loss. I thought about those huge hearing aids from when I was a kid. My fat ego was always like, Hell no, I would rather be deaf.” (pg. 285, “On Being Human”)
When we keep something secret, it is often because we feel ashamed about it. In the book, Pastiloff mentions how she was ashamed to tell anyone about her tinnitus and hearing loss.
“I heard the ringing that was my nameless companion. I was ashamed to tell anyone about until I was in my late twenties and learned what it was called and what it was. Tinnitus.”
Based on my own experiences and the stories I have heard from others, battling shame and acceptance is one of the biggest battle of being deaf or hard of hearing. Pastiloff sharing these moments, which makes readers feel less alone in the feelings and thoughts they have.
Making peace with your hearing loss
Pastiloff wraps up her book by talking about her journey to accepting her hearing loss. She also realizes how hearing technology could change her life.
“The way my life opened up after I got those hearing aids was indescribable,” she writes. “I had to come to terms with how much I had been missing. I had been walking around hearing only about 15 percent (if that). I had gotten so used to it that when I got the fancy hearing aids, I felt embarrassed at how I had been functioning before.”
There were years where I didn’t wear my hearing aids, so I can relate to this completely.
Read more: Why I decided to wear my hearing aids
Lessons from “On Being Human”
“How many times had people judged me because they thought I simply was not listening when really I had an invisible disability? How many times had I judged someone in the past? I promised myself to not shame anyone for looking around too much and “not being present” when in reality they might be deaf. I vowed to have compassion. Empathy.” (pg. 155, “On Being Human”)
Making an invisible disability visible can be a part of accepting your hearing loss. Showing others compassion and empathy can often lead to compassion and empathy to enter your own life.
“I heard ringing in my head twenty-four hours a day on top of the hearing loss. I couldn’t fake it anymore, and in that place, with those bodies, for some reason, I decided that it was okay. it was the first time I saw how softening can happen when we allow ourselves to fully inhabit our bodies. I began to let go of the mantra I am strong. It became I am soft. ‘Annie I can’t hear you if I close my eyes,’ I said one day after class”. (pg. 151, “On Being Human”)
“I began to let go of the mantra I am strong. It became I am soft.”
Putting up walls for protection can make advocating harder at times. Sometimes softening and acceptance can make for an easier transition to asking for what you need.
As I finished “On Being Human” I was reminded of an important lesson: when we let go of who we think we are supposed to be, we create room for us to be ourselves.
Did you read the book? What did you think?
Love to read? Join the HearingLikeMe Book Club! To participate in the book club, simply read the chosen book of the month, then join the conversation on Instagram and the HLM Facebook community. If you’d like to be part of a closer discussion, you can also apply to be a Phonak hEARo.
