Trigger Warning: suicidal thoughts, self mutilation, anti-fun
I don’t know if I have the courage to write this. My life has been an ongoing, agonizing war with noise.
It was July 3, 1971 or 1972. I’m not sure of the year. I was very young, maybe three or four. My family went to a party at my aunt’s house by one of the Finger Lakes for the annual Lake On Fire celebration of fireworks and flares, always held on the night before Independence Day. I had free range of the house and property as long as I didn’t get near the road. So, I went out the back door and toddled around the side of the house to where the main door was. There was my uncle’s dad, not a direct relative of mine. He didn’t intend harm at all. It was all in fun. I hold no anger or hate for the man which is strange because this may have been the instance that caused lifelong torture. I think he just wanted to scare the people inside. He didn’t know I was even there. He set off an M-80 just as I got close. It was the loudest thing I’d ever heard. The instance is still etched in my mind.
Again, I don’t know if this is when it started. I just have a guess. Since that day, I have never quite been able to handle sudden noises above certain decibels. It is the most gawd awful feeling, maybe fight or flight. Maybe it just hurts. My parents never understood it. They thought the fireworks were beautiful and fun. I found it to be agony, standing close to my family, plugging my ears like an idiot, while everyone else ran around ratcheting up the noise in a gross mockery of fun. All the other holidays had their own appeal for me. Independance Day was just a day of agony.
The pain and fear were never far off, something that alternately amused and angered my dad whenever there was a thunderstorm or fireworks. There really wasn’t any understanding of the nature of the brain and hearing back then. He thought maybe if he shamed me, I would suddenly become okay around fireworks. He warned me that people would laugh at me and call me “Boom Boom Donna”. I don’t know what he thought that would accomplish. Maybe I would discover how much my agony impeded their fun and not feel it anymore. I don’t understand the logic.
It didn’t get better no matter how much shame he applied to the situation. My birthday is in late summer. I was about to turn 6 and I wanted a birthday party. Mom and dad told me to come up with activities for my friends for the party, so I told them what I wanted. Dad said no and came up with his own ideas he thought the other kids would like. Among them was to go down into the unfinished future family room, tie balloons to their ankles, then have them dance to music. The last one to still have an intact, inflated balloon would get a prize. That’s what kids like. It will be fun. I protested. He got angry. He wanted that activity for the kids, and he wanted me to participate in it if I remember correctly. I have a photo from that birthday party of me surrounded by my friends over cake. The game was supposed to be right after cake. I’m the one in front of the cake. I never noticed until I restored my family slides a few years back how scared I look. The kids were told to go downstairs into the family room to play the balloon game. At the last minute, mom probably sent dad on some tasks. She allowed me to stay out of the game and upstairs where it wasn’t as loud.
I know my dad sounds like a real jerk, and maybe he is. He definitely became a MAGA follower much later on. But, again, what happened was not understood at the time. No one knew what was wrong with me. They thought I was just a maladjusted kid, a spoiled brat. I am sure there was an argument that my mom was just coddling me, and I needed to learn to be strong. That was the 1970’s for you. Most of the time, it was a great boon. I got to do things that kids these days would never be allowed to do. But this was the downside.
It kind of became a family joke: Boom Boom Donna.
I grew up with this problem. I hated this holiday and, when I was old enough, I elected to stay home for the Lake on Fire celebration, much to my dad’s chagrin. But the problem was getting worse, not better. Now it was starting to hurt going to the grocery store because kids were screaming and that put me in agony.
I limped through my childhood and into adulthood afraid and in pain every time there was a loud noise. My dad applied shame liberally and tried to toughen me up. It just made everything worse. I was getting scared to leave the house.
But I did. I married, moved west, buying a house in a rural Rocky Mountain forest where fireworks are pretty much banned for fire danger. We never go to Fourth of July shows. They’re a trip to hell for me. But I am now sensitive to kid noise even though I never had any kids of my own. I was starting to get into playing Irish traditional music, which is often played in bars. It was something fun. I was making friends, learning a new skill.
Then it went to hell again. I don’t know if word got out about these music sessions or more parents started to bring their kids to the bars. But they have this thing about it taking a village. And, wherever they go, that’s their village and everyone is supposed to “socialize” their kids and tolerate any bad behavior. So, too often, it turned into kids shrieking while we’re trying to play.
I mentioned it on social media to music friends. Some of them jumped right on me about it, how I am a bigot for not liking kids and how it was my job to socialize (whatever TF that means) those kids, and how adults with disabilities don’t deserve compassion. It should only be applied to kids. It isn’t just my parents. Now I was upsetting friends because of the agony I was in.
Suicide came up in my head those days. I can’t tell you how many times I thought about suicide because it wouldn’t be so effing loud anymore. I love my husband. I love my place in the mountains. But I can’t deal with the pain when I do go out if it is loud. I can’t deal with the disrespect I get from friends sometimes about it. I would like to live too. I daydreamed of taking a Q-tip and shoving it through my eardrums because deafness was preferable.
Hubby finally was able to convince me to see an audiologist about these problems because I was so inconsolable. I had to work through a lot of built up shame in my head put there by my dad and maintained by some of my friends in order to do so but I made an appointment at this hearing clinic in Denver. The doctor did a barrage of tests that took around two and a half hours. I left with a diagnosis.
Hyperacusis and misophonia.
A lot of people know what misophonia is. It’s that condition where hearing someone chewing or clipping nails or snoring or something else causes you to burst into rage and hatred. Hyperacusis is caused by trauma to the hearing center of the brain that makes you increasingly sensitive to noise. It’s often, but not always, caused by a loud sound that somehow causes the brain to rewire to amplify it as the sound is now hard coded as a threat. This is not a psychological condition. It is physiological. Let me tell you, it’s excruciating.
There is no cure. And, apparently, plugging your ears or wearing earplugs make it worse, not better because the brain is trying to hear those threat sounds through the blockage. Therapy is supposed to help a bit, but it never has for me on this. There is treatment which was, at the time, prohibitively expensive but we managed to find a way to get the treatment. The treatment involves a gentle desensitization program involving daily listening to music on a device that puts in random interruptions that you can’t consciously detect. It kind of worked but really it didn’t. I don’t remember how many years I did the treatment. It showed in hearing tests that I reached a threshold where a lot of it was still pretty painful, and the sensitivity didn’t go down. It is still all experimental. Right now, the best I can do is create a place where there is white noise and some sound proofing. I still go to restaurants and bars, but I have to leave if there’s a noisy and obnoxious kid because, chances are, the parents don’t care and are just on their phones, and nothing will be done about it.
But, this holiday, my blood pressure starts spiking badly. I’m afraid to go out. I’m afraid to enjoy a lot of things normal people enjoy. I am terrified that someone in my quiet neighborhood will ignore the prohibition on fireworks especially with the current proliferation in the country of spoiled ***hats who think they should do whatever they want and not suffer the consequences. I am going to be in the back room tonight with the cats, windows closed, storm windows shut, black out curtains drawn and air purifier running at full blast for white noise. I have noise canceling headphones and podcasts ready just in case. Sorry to be against everyone’s fun but f*ck your fireworks.
I hate this holiday.