The Sounds Are Not Okay...
The Sounds Are Not Okay...
Fatherhood and Getting What You Need
Before today’s very personal essay, I have an important update on the newsletter
It’s been over six months since I launched WORK/CRAFT/LIFE. It’s already been an incredible journey, and I couldn’t be more pleased that we have grown to almost 6,000 total subscribers. That has far exceeded my expectations, and more importantly, I’ve loved writing these profiles and engaging with all of you. So first off, thank you.
That said, between my non-fiction and fiction (as well as my first official TV series writing project), there simply isn’t enough time to juggle a weekly, in-depth profile to be delivered into your inboxes for free. Only a small percentage of you are paying—SO FAR. Finding good stories, research, interviews, photography, writing, editing, and readying for publication amounts to roughly 15-20 hours a week. The Midwesterner in me must balance my passion for these profiles—and this work—with bread & butter practicalities. If I was to do the math, which I have, I might be better off laboring the night shift at McDonald’s. I love a good Big Mac, but…ouch!
So a few things:
It’d be wonderful if many more of you support these stories with an annual subscription ($55). That’s approximately $1 a week, and for new subscribers, I’ll also send a signed and personalized Bascomb book of your choice. That’s a $25 value—at least. This offer expires in two weeks. I hope you support!
Moving forward, I will be publishing in-depth profiles of individuals and how their work shapes their lives on a biweekly basis (that’s twice a month!) All subscribers, paid or free, will receive these profiles. They are the heart of this newsletter, and my joy to write.
On alternating weeks, I am introducing what I’m cleverly calling EXTRA! EXTRA! (As in ‘Read All About It!’). These posts are for PAID SUBSCRIBERS ONLY. The personal essay below is exactly one such. There will also be shorter Work/Craft profiles, author interviews, work-in-progress book excerpts, chat threads, suggested reads and recommendations, and whatever else strikes my fancy that I think you might enjoy too. My promise: the biweekly EXTRA! EXTRA! will be thought-provoking, fun, and engaging! You won’t want to miss them!
To reiterate, PAID SUBSCRIBERS will receive EXTRA! EXTRA! posts—and the ability to join the community, make comments, read all past profiles, and that signed Bascomb book if you sign up quickly. Also please know you’ll be supporting a unique kind of journalism.
Thank you again all for allowing me into your inbox every week and reading this newsletter. Now onto my EXTRA! EXTRA! essay, inspired by my courageous daughter who is soon off to college.
THE SOUNDS ARE NOT OKAY
I remember well the morning walk that forever changed my experience as a father. It was a bright muggy day in the summer of 2014. My family was living in London while I researched my next book. From our rowhome in Maida Vale, we were headed down the cobblestone mews to the bus stop. My two girls, Charlotte (9) and Julia (6), sported their summer camp gear, each with a lunch box in hand that seemed to tilt their bodies to the right. They walked slightly ahead of my wife Diane and me, our dress shoes clomping on the stones. Suddenly Charlotte turns, her face flushed red, and she yells at us for making so much noise. Then she storms ahead, leaving us all behind, flabbergasted.
Over the next few days, the sounds that flew her into a rage metastasized. The clank of the buckles on my briefcase. A sniffle from her sister. Some labored breathing after a run. And most of all, anything and everything to do about eating. We had a tiny kitchen and an even tinier table around which we sat. She couldn’t stand to remain at dinnertime as we chewed our food, slurped our soups, or swallowed our drinks. For her, it seemed, we were noisome ogres with the slovenly manners of Shrek. The banging of her bedroom door often followed. Tears and anger on all sides too.
Diane and I had no idea what was happening, and missing our shelf of parenting books, we turned to Google for an answer. “Aversion to sounds,” I recall typing into my search bar on one of these evenings. Up came my answer. “Misophonia, or hatred or dislike of sound, characterized by selective sensitivity to specific sounds accompanied by emotional distress, and even anger, as well as behavioral responses such as avoidance.” A pit widened in my stomach as I scrolled through the page. Words and phrases popped up like accusations: “Mental illness. Depression. Isolation. Anticipatory Anxiety. Suicide.” Sleep did not come that night, nor many to follow.
I had never heard of misophonia, nor did I quite believe it. Someone sniffling can be irritating, and so too a heavy chewer. And don’t get me started on snorers. We met up with a friend one night at a pub, and since I’ve never been able to bottle up my emotions very well, he asked me what was wrong. I explained about Charlotte; he reassured me that she would grow up and out of it. “I hate the sound of sucking on a straw,” he said. “I got over it.”
His best intentions aside, this is not that, as we have learned over time about misophonia. For Charlotte, her sensitivity to certain sounds creates an instant, automatic reaction that triggers a fight-or-flight response, both emotionally and physiologically. Rage. Anger. Hatred. Panic. Fear. This is what she experiences, not annoyance. She does not choose this reaction. It is neither brattiness nor a cry for attention. For her, it is a nightmare made worse because the noises that upset her most originate from those closest to her (a common phenomenon).
Although an understudied disorder, misophonia affects upwards of 15-20% percent of the population to varying degrees, and symptoms typically appear between the ages of 9 and 13. As usual, Charlotte was right on time. Doctors and psychologists are just beginning to identify it as a brain-based disorder, likely a disruption in how the brain processes and prioritizes sound, but the research is still in its infancy.
Once we returned from London to Philadelphia, we sought treatment for Charlotte. She has done exposure and cognitive behavioral therapy on and off for years. We try to ensure she gets a good night’s sleep, eats well, and exercises, all of which are supposed to ease the symptoms. Meals at home are eaten with the stove fan on high. When traveling, the separation of space in hotel rooms is a necessity. Accommodations have been made at her schools.
Fatherhood throws all kinds of curveballs, and there are many worse than misophonia, but it has not been easy. Not for me. Not for Diane. Not for our youngest daughter. And especially not for Charlotte. Despite her treatments and workarounds, she is triggered by sounds daily. There are still tears and eruptions and moments of despair. As a father, I feel every one of those with her.
But, for all the challenges that have arisen from her misophonia, my worst fears when that pixelated word first appeared on my laptop have not come to pass. At seventeen years old, Charlotte does well in school and is college-bound; she has made friends and a steady boyfriend; she is a star in theater; she loves overnight summer camps; she thrives in her part-time job; she is a master scuba diver (it’s quiet down there). I thought that misophonia would define her as a person. Instead, she has defined what misophonia is in her life: something to be managed daily, but that is it. She is not shy about her struggles. She does not attempt to hide it either. When I asked her if it was okay to publish this essay, there was no hesitation. “Sure, more people need to know about misophonia.”
Do we enjoy dinners out at a restaurant? Rarely. Do we have movie nights at the house, all cuddled close on the couch? Nope. Is travel on family vacations easy? That’s a negative. Yet, we have found other avenues to be together that bring the same measure of closeness. Hikes in the woods with our rambunctious dog. Bagels at the outdoor café alongside a busy city street. Jamming tunes in the car on high, windows open.
Further, in her way, Charlotte has made her misophonia a superpower. It has helped her be more sensitive to others and their struggles. It has instilled in her an ability to manage and overcome her fears, whatever they might be. It has given her an iron will, an eagerness to connect, and an emotional intelligence that sometimes is downright stunning.
My good friend Josh, who likes me so much he made me a best man twice, once gave me advice while I was in the throes of something with my younger daughter. “On the other side of all this time and emotion you pour into your children, you will have profound realizations that will make you a better human. They will be your teacher. All the pain will drive you to work. All the work will lead to change. All the change will instill a deep pride and a lasting connection with your beautiful humans. They will become your greatest achievement.”
I have often failed Charlotte, perhaps too many times to be forgiven. I’ve had doubts, lost my temper, and been clouded by wishes that things were different. I should have seen the strength in her that was already there along that cobblestone mews. But I trust her to be okay now, better than okay, and she and her sister have indeed made me a better person, the person I needed to be for them. They are indeed my finest achievement.
When I consider what it’s like to be a parent with a child who suffers from misophonia, I’m reminded of the lyrics to that famous Rolling Stones song: “You can’t always get what you want, but if you try sometimes, well, you just might find, you get what you need.” That might well be an anthem for all fatherhood.
Let me know if you have any questions about the changes to the newsletter. We’ll talk again in a week. As always. Same time, same band, same place.
Yours,
Neal
As someone who suffers from light misophonia, I know how frustrating it can be that people dismiss it as not being real. Kudos to you for taking Charlotte seriously and learning about it. As someone else said elsewhere, much of mine has gotten better with age and I have to be pretty close to someone chewing loudly. But if I am, it is absolute torture.
And I can frequently hear sounds that Brent never notices at all. It can definitely be a challenge.
And congrats on hitting 6000 subs. That's a great achievement!
Wow.. another health issue that could be easily written off or misdiagnosed. I’m in awe of how you jumped in and took this on as a family. I don’t have children but I was once a child so I remember how scary any unknown illness can be. I hope we all get an update periodically. It sounds like Charlotte did not fall far from the tree. With you and your wife Diane on top of this she is in the best hands. And I will continue to be a faithful subscriber.