A prisoner to Misophonia. Today I wanted to run away. I thought about those delinquent mothers on the news I’ve always judged for leaving their families for what they hoped was a better life. I figured they were selfish, cruel and heartless. But today I thought of those mothers and wondered if they had cause. Was raising kids just too demanding? Were their expectations totally off? Did they have a insane midlife crisis? Were they exceedingly selfish or just deranged? Or were they like me, a prisoner escaping an unbearable fate? Well, before you judge me… I personally wouldn’t run from my problems or my own disappointments. I’m committed to my kids, pets and spouse. And I don’t tend to wonder if the grass is greener elsewhere. But who knew I could sorta empathize with breaking loose from the domestic rat race? And it intrigues me… Did those deadbeat moms find the peace and solace they went looking for?
My child has Misophonia. It’s a rare and bizarre disorder that wreaks true havoc on everyone near it. I’ve wanted to run away from it for a day, a month or just an hour. Misophonia has taken more away from our family than anyone can understand without experiencing it themselves. It has stolen the simplest pleasures of life. Like sweet, silly moments, laughter and giggles too. Movie time, dinner time, barbecues, shopping, snuggling, praying, hugging, singing, kissing and more. It’s robbed us of basic stuff like peace and joy. Happiness is a luxury that we watch out for and truly embrace in a fleeting moment. My child and our family are constantly under attack from Misophonia, a bitch of an illness that doesn’t let up. It has taken away my daughters childhood and sense of safety and her big brothers youth and serenity. It’s replaced her dad’s restful nights with tossing and sobbing and her grandparents sweet golden years with apprehension and fear. It has swallowed everyone’s peace of mind and sense of clarity. Our life is a battlefield. For me, it’s beyond the loss of my happy, healthy pre-teen. It’s beyond the strain on a good marriage or the breathtaking fear of her taking her own life. It’s beyond the sharp truth there is no cure or the scary notion it can get worse. It’s beyond comprehension. Certain things tend to evolve when you have a tragedy at home like a chronically sick child. There are resources and self help books and doctors and clergy that help navigate the unthinkable onset of a sick family member.
There is no handbook for a parent who is the inconceivable cause of their child’s suffering. My existence alone can bring such intense pain to my kid and allow her symptoms to build without reprieve. This is the side of Misophonia that no one talks about. The mom who causes the pain. This is the dirty secret of a berating illness out of control. I am absolutely reprehensible to my own child. And I am a prisoner to her Misophonia, a bizarre condition that keeps me from breathing, coughing, sighing, blinking in my own house for fear I’ll be attacked. My inadvertent swallow is a cruel and disgusting trigger. But I can’t control it. It puts me at risk of being abused verbally and even physically. It banishes me to my bedroom where I am under guard until I hear the Misophonia walk away. It makes me want to jump out of a moving car when the ugly side strikes. And has me curled up in a church pew desperate for God to show up. It’s got me rocking and weeping in my backyard after I’ve triggered an attack on my beloved child now erupting with rage. Even when it’s over, I am on eggshells for its return. I stay still and breathe shallow and silently in a rhythmic intensity. And wait for the next attack. I sheepishly move about as not to offend the Misophonia monster.
I lose sleep and friends and joy and faith. I lose my sense of clarity and purpose. I hate myself and my existence in my child’s life who I am a source of pain for. I am the problem. I am the enemy. There is no clear theory on why the parent is the greatest offender to a child who claims them as an ally and best friend. There is no good enough explanation for why the brain reacts so reckless to a trigger. I am abused by Misophonia attacks in the car, in the store, in church and at home. There is no escape. Even texting can caused a rush of panic and a good lashing if the grammar is wrong or words are misspelled. Abbreviations, “corny” language or appearing “stupid” will trigger a bad response even from afar. And then “I get it” when she gets home too. But she still needs me, her mom, while her illness rejects me, her trigger. I’m the one who betrays her sensibilities. She wants me near but the condition refuses to accept me in its fury so she runs. Far. Far away. She loves me dearly but her brain can’t process it fairly. It’s unjust, cruel and remarkably destructive. It’s Misophonia and my child has it. It’s still my child and I’ll never run away from her. It’s her ailment and existence and I wonder how I will get through another day. I can’t run away from this. Not just because it’s my maternal fate and true desire to live this course with her. But because her Misophonia needs to feed on something. That happens to be me. I think I’ll stay.
By Chris Scott