Playing dress up

Christmas

Written by Scott Bailes

Recently, I shared my patient story with Hyperacusis Research. If you would like to have a better understanding of my backstory to help contextualize this article, you can read it here: Scott’s Hyperacusis Story. Christmas My experience as a parent with hyperacusis and tinnitus varied greatly over different periods, due to changes in the severity of the conditions. I’ll break down my experience into stages, detail the difficulties of each, and discuss some approaches I took to address my new challenges where applicable. In closing, I will discuss the grim reality I now face.

The Nightmare Begins

At onset in June of 2019, I had moderate loudness hyperacusis coupled with severe unmaskable and reactive tinnitus. I was unable to sleep for more than fifteen minutes a night, when I would nod off from sheer exhaustion. It soon became a struggle to function period. In regard to parenting, I was barely getting my kids basic needs met. The active father who combed the city with his children looking for adventure was nowhere in sight, replaced by a shell-of-a-man who could barely put together their outfits for the day. I sought to address the sleep issues to no avail for weeks. Ultimately, I ended up having to quit my job, leave my children full-time with my ex, and move four hours away to live with my mother. This was soul-crushing, as I’d never spent time away from my kids before; we were almost inseparable. At my mother’s house, I was finally able to get on a medication that helped me to sleep. While I now had sleep back, I still found myself unable to function at a basic level where I could try to rebuild my life. Keeping in touch with my kids was difficult, and not just because of my abrasive ex. Using a phone to FaceTime was overwhelming. The tinny sound of the speaker was jarring to my ears and made my tinnitus scream louder. My kids were too young for texting at this point, so I barely spoke to them to avoid further irritating my ears. To compensate for my inability to talk to them, I would send them old pictures of us and short videos of me speaking to them to stay present in their minds, and reassure them their father had not abandoned them.

Back, but Not Like Before

After several months of mostly sitting in silence, I finally decided to brave making trips to visit my children. I was not in good shape overall, but was learning to navigate — to some degree — with my new conditions. My ex agreed to allow me to stay with her, as long as I provided day-and-night child care while I was there. Reuniting with my kids felt amazing, but presented many new challenges. My children aren’t particularly loud, but my daughter could squeal at times when she got angry. After she figured out I was now fearful of this happening, she would often threaten to do it to get her way. Hearing protection would help, but it didn’t mitigate the sound enough to make it tolerable. Placing her in time-out as punishment for the threats would only result in her crying loudly, which was just as distressing. This made enforcing rules and teaching behavioral lessons a major hurdle that I can’t say I was ever able to fully overcome. Often, I would have to try and placate her with offers of rewards for de-escalating, in order to spare my ears and my overwhelmed sensory system. In turn, this taught her she could get rewarded for bad behavior.  

A lot of my daughter’s anger issues stemmed from feeling like she was the odd one out in our crew. With my ex gone so much, she was surrounded by only males. Many of her interests differed from the boys and mine. When I could sense she was feeling left out I would try to engage her in an activity that she preferred. Thankfully, she had some interests that were fairly quiet. She liked to do art projects, play dress up, and help me with cooking. Sometimes this approach would help prevent an outburst and spare my ears.

Action figure battle

At home, I had to limit our activities because the ringing and sound sensitivity were so mentally taxing. My youngest son and I loved playing pretend with his action figures, but I was forced to end a session after a maximum of ten minutes. He liked to get animated with the battles, and I couldn’t take the sound of the figures crashing into each other in combat, or the noises he would make with his mouth to illustrate the impact.

Visiting an isolated park

I wanted to do something to address my youngest son’s lack of cooperative play opportunities. In the end, I actually found an approach that met the needs of all three of my children in some capacity. I decided I’d pay my older son an allowance to play with his siblings — giving them each a thirty minute session — doing an activity of their choosing. My oldest son was able to earn money for video game purchases and learn responsibility, while my fraternal twins were engaged in ways I struggled with, or could no longer participate in altogether. Artificial audio continued to be a major issue for me. My children and I could no longer watch television or movies together. I could withstand the sound of their iPads from a distance, as long as the volume was low — so they were able to watch them — but I couldn’t share in viewing with them. We were able to play video games, but only with the volume muted. I also had to have them restrain themselves from emotionally reacting to what was happening in the game. They were unable to listen to music in my vicinity in the apartment, and we couldn’t listen together in the car. Board games, card games, and games of skill could be difficult in some cases. In particular, Trouble was hard to tolerate because of the dice-bubble popping noise, Uno was difficult due to the sound of shuffling cards, and Jenga was intolerable because of how loud the crashing of wooden tower pieces could be when the structure fell. We were able to play games that didn’t make much noise like Chutes and Ladders, Checkers, Chess and Storytelling Dice (rolled on padded surfaces, not hard ones). In the past, I had always sought out my children to spend quality time together. Even if they were playing among each other, I would sit nearby and observe them contently. Now I found myself constantly retreating to quiet, trying to rest and recharge enough to make it through the day. Picking my children up from school was draining. I had to wear ear muffs and wait in the principal’s office for them to be brought to me. Trying to retrieve them from the parent pickup area was just too loud and sensorially overwhelming. Listening to my tinnitus scream bloody murder, while surrounded by people talking in the office was disorienting in itself.

Playing video games together

My children were used to being engaged a lot. We were always on the go before I developed these conditions. In the state I was in, I was unable to take them anywhere in public other than small isolated parks, with very little there to entertain them. The frequency of our outings was now greatly reduced. Though I would often visit for weeks at a time, we’d only venture out once or twice during my stay.
I tried to do something special when we did go out, to help offset the disappointment from less playground equipment, and few children to interact with. Mainly, I would pack a picnic or buy them slushies and candy for a surprise snack. Throughout this period, a repeating pattern emerged. I would eagerly await another visit with my children while at my mother’s house, because of how much I missed them. However, once I returned to them, I would grow anxious to leave due to the pummeling my ears and psyche took during my stay.

Homecoming

When Covid-19 lockdown began, my ex and I decided it would be best if I moved in to take care of the children around-the-clock. Their school had closed temporarily, and when it reopened they would only offer a virtual option.The restrictions of lockdown mirrored those imposed by my conditions, so there wasn’t much adaptation required on our part. Initially, the main difference between the previous stage and this one, was I no longer had a downtime period away from my children to revitalize. This made things very exhausting, and there was little I could do to mollify that.

Gaylord Opryland Hotel carriage ride

Until this moment, I had abandoned all my hobbies. They almost all revolved around music, which I no longer could listen to or create. I decided to return to cataloging data about music releases on Discogs. This allowed me to reconnect with my love of music to an extent. I also hooked up my PlayStation 4 in the living room and started to play my preferred video games by myself. These avocations gave me an outlet to help cope with my increasing stress. During this stage my loudness hyperacusis and tinnitus gradually began to improve. Unfortunately, at the same time, I also developed mild pain hyperacusis. Thankfully, this was only triggered by higher pitch noises and artificial audio. Unfortunately, when my children began virtual schooling I was surrounded by tinny sounding speakers. Each of my children had to have a laptop setup for their classroom participation. I refused to let my children wear headphones for school, because there was no regulation of the audio being broadcast by their teachers or their classmates. With this being the case, each setup had to be in a separate room, so the sound from each didn’t compete. This meant me wearing earplugs the entire time, as I frantically ran from room to room trying to make sure my children were engaged in their schoolwork. With earplugs in, I could barely hear any of what was happening, to help guide me in directing them. Unfortunately, if I took the earplugs out, it would trigger my pain hyperacusis, so I just had to make due.

A Twinkle of Hope

By the July of 2021 my loudness hyperacusis was gone, my tinnitus had reduced considerably to a mild level, and my pain hyperacusis was dormant. I was still cautious of noise exposure, but started working towards forging a semblance of a normal life. I was now at a point where I tolerated artificial audio fairly well. My children and I were able to watch shows together and have movie nights. I could watch videos with them on their iPads and talk on a cellphone (on speakerphone). We could play video games with the sound on and they could react emotionally to the games within reason. We were also able to listen to music indoors and in the car. My children and I began going out regularly again. Our activity choices were still limited, but nowhere near as much as before. We returned to some of our favorite playgrounds in the city, as I could now tolerate the noise of larger groups of children. We were able to eat at restaurants, even ones with background music — as long as the levels were reasonable — and the establishment wasn’t particularly busy. We could go to the mall during less busy business hours to shop and visit the play area. We also visited the many farms on the outskirts of our city to pick seasonal fruits.

Occasionally, we would go to louder activities such as festivals. For these outings I wore earplugs and avoided any music stage area completely. The biggest adventure we took on was going to Nashville for vacation. We spent a week at Gaylord Opry Land Resort exploring the hotel, doing activities, trying the cuisine, and frequenting the water park.

Physical therapy In addition to my ear issues, lockdown had precluded taking my children to medical appointments, and my youngest son to physical therapy. I was now able to take my children in for these obligations, except for the dentist, which my ex would take care of.

Lost My Grip

In November of 2021 I experienced a setback from an unexpected source that sent me on a downward spiral. By February of 2022 my sound tolerance had bottomed out and I developed severe pain hyperacusis. I began having to wear hearing protection twenty-four-seven. Any time I would try to expose my ears to any level of noise — regardless of the type — I would get cycles of ear and face pain lasting from hours to days. Things deteriorated quickly. Once again I couldn’t take my kids anywhere in public. I struggled to even get them to and from school on a daily basis. I had to flat out refuse to take them to appointments again, when goaded by my ex. I returned to ordering groceries online and could no longer do certain household chores like vacuuming. My ex refused to clean, so anything I struggled with went undone. The situation soon got worse than ever. I could no longer interact with my kids without winding up in pain. Anytime I tried to do activities, I would pay the consequences. This meant I was only able to do the bare minimum. I would get them ready in the morning, cook their meals, do their laundry, break up disputes, oversee their hygiene, and put them to bed at night. Other than that, I isolated in a bedroom upstairs all day long. At this juncture, my children were essentially being ignored. Periodically, one of them would venture into my room to talk, but we could only speak briefly before it caused pain. Without parental interaction and guidance their behavior began to go downhill. This led to shouting matches and screaming fits, that would put me in pain from two floors away, through double hearing protection. My ex grew increasingly aggravated with my new level of functionality, or lack thereof. She started to get verbally aggressive with me, and make loud noises intentionally to try and hurt me. Any requests for accommodation were met with anger. During this time, she had been in training to become a firefighter. Once she graduated from the academy, and felt like she no longer needed me, she ordered me to leave. I was unable to financially support myself once again, and had to move in with my father, as I had nowhere else to go.

Robbed of All Meaning

At this point, I can longer be a father to my children in any real capacity. All I am able to do to keep in touch — when my ex allows it — is text. Unfortunately, my children aren’t big on texting. My oldest son normally replies with one-or-two-word responses and my twins mostly do not respond at all. I try to remain hopeful that I will heal to an extent and rejoin my children’s lives in some way. Sadly, it’s been over a year since my initial setback and my condition has only worsened to a level I never imagined I would reach. Being a father defined me; now I have been robbed of all meaning. The void between my children and I spans a much greater distance than the six hour drive between us. I have a small shrine of art they made for me in my room, I still look at pictures of them daily on my phone, and I write to them in a journal I hope they will someday be able to read. Memories of all the good times we shared are so fresh in my head, but for all intents and purposes, I am just a stranger to them now, fading more from their young minds each day.