The Sounds of Our Crisis Living with Misophonia

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Everyone has a trigger… that one thing that will make you go apeshit.  The emotion you just can’t cope with.  The monster you were sent to slay.

Mine is feeling silenced, my voice stolen.  Muted. Dismissed.

So naturally, I have  a child that hates the sound of my voice.  She suffers from misophonia, which makes her go crazy if I talk in the car while she is in the back seat.  She can’t stand to hear me talk on the phone, or converse with Rick downstairs on the couch while she tries to fall asleep.

Is that irony?  Divine cruelty?  God’s stab at satire?

Maybe.  But it also gives me clear direction…it demands that I find a way.   I have a little corner here, my own piece of the internet, and all I can do is write about what is happening with honesty.

I’m scared.  Driving home with my girls squabbling in the car, the fear creeps in.  It makes me angry and I am yelling at them before we have hit the driveway.  We have been together for 4 minutes.

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We are emptying the dishwasher, sitting the table for dinner.  Lydia stomps down the stairs, on the defensive.  She is singing loudly, slamming things to the ground, shoving chairs into the table, she crashes through the kitchen… the fear grabs me by the throat, and I struggle to maintain calm.

Lydia hisses at Carly as we sit in our chairs, and jumps to her feet quickly, almost knocking over the chair, slopping water out of the glasses.  About five months ago, Carly was added to the growing list of things that provoke Lydia’s misophonia meltdowns.  I take in a few gulps, the panic I feel tightens every muscle in my neck, strangling me.  She grabs her plate and kicks the swinging door in, stomping.  She grits her teeth but it doesn’t muffle the  furious screech.  We all freeze in place.   I put my hand on Carly’s back, and the small gesture of compassion breaks her composure.  She whimpers, and then grunts angrily.  Rick hands me Lydia’s  fork and napkin.  I snatch them from him and storm into the kitchen.   I try not to throw them at her.   She is cowering in the corner,  plugging her headphones into her iPod, turning it up so loud I can hear Bruno Mars damaging her eardrums.  She looks at me with disgust.

It hurts.  I can’t help it.  I feel wounded by her posturing.  Her revulsion.  Her aversion.  It’s an old wound now, scarred over and reopened by her sharp looks and high-pitched screeches over the last 18 months.  It’’s raw right now.  Because she is triggered by Carly too.  And every time she hurts my adult feelings, every time I must reach deep into the best, most mature part of myself to process this hurt and turn it into much-needed compassion for my glowering daughter, I think of Carly.  Her inability to process.  Her young spirit, and what this rejection must be teaching her about herself.  The complexity of the emotions swirling around our dinner table is nauseating.

I retreat to the dining room, and we eat, minus one.  While we eat, I struggle to pull my mind out of the next 10 years.  How will we survive this?  What will this do to us?  What will happen to my little girls?  To me?  I look at Rick, my eyes communicating my desperation.  He tries to ground me into the moment.  “Take a bite.  It’s just dinner,”  his eyes say, pleading.

It doesn’t feel like just dinner, it feels like our whole lives are being swallowed by this crazy, mysterious misophonia.

Sometimes, I can not keep the monstrous fear at bay and  I lose it.  Most of the time, it looks like anger.  I rant. I watch Stella’s eyes widen as she hears, “I’m so damn sick of this shitty behavior!”   The words taste terrible as I spit them out, aware of their sharp edges.     This extra loss of control  must do wonders for all three of my girls’  already tender, aching spirits.  Their appetites.   Being angry with Lydia is like being angry when a wounded animal snarls at you.  She is hurting, I know this.

Sometimes, the tears just roll, drip into chicken orzo pasta, and everyone acts like they don’t notice.

Sometimes, we pretend it isn’t happening.  We spend the meal sharing things we are grateful for in a clockwise, orderly fashion.  Stella gets up, runs to the kitchen, and makes Lydia lift her headphones and give her grateful words so she can report to the group.  The grateful list is building up, the room tightening with tension.

After dinner, when the clicking of the silverware against the plates stops, when the sight of Carly chewing her dinner is gone, when the sound of me taking a sip of water is over, Lydia goes into sweetheart mode.  She is throbbing with guilt and shame, she is not oblivious to the pain she is causing.  She snuggles up to me, she brings me school papers with great marks, she sweetly engages with Stella, offering to help her get her pj’s on. She tries to make Carly laugh.   She leaves us love notes, to smooth out the hurts.

I often find Carly sulking in bed.  The rejection is getting to Carly.  Normally so passive, so unexpressed, so quiet and easily content, Carly is beginning to show her pain.  She is frustrated and pissed off, she cries in an angry fit, kicking at my attempts to hold her.

“She HATES me!  She thinks I am disgusting!  And I am not doing ANYTHING!”

She folds her arms defensively, growling at me.  I try to explain.  But the explaining doesn’t soothe.  I know that, as I ache too.  I feel rejected.  I feel terror about how Lydia’s life will unfold, how she will manage.  I feel the weight of the damage she is doing to her sister, unintentional, but real, slam me in the chest.

Oh my GOD, what are we going to do?

It is not breaking my heart…it is eating me alive.

I think about all the families out there, trying to hold on.  Carrying their own burdens.  Their own hurts.  I am grateful for the health we do have.  That my girls are doing well in school.  They enjoy sports and friends and music and movies.  I think of people I know.  People I know who have children with closed  head injuries.  Autism.  Feeding tubes.  Wheelchairs.  Brain damage.  Schizophrenia.  People I know who have to liquefy their child’s meals and feed him through a straw.  Or are acting like their son’s pancreas, spending sleepless nights on his bedroom floor, praying the numbers go up, one hand ready to summon an ambulance.

These thoughts do calm me.  I do feel genuinely grateful.  I feel relief that it is not me.  And then I cross my fingers, knock on wood, send up a half-hearted prayer.

And please bless that will never be me.

But it does not drain me of my fear.  It does not help me feel capable of handling my own life.  My own daughters.  My own burdens.

I used to have a recurring dream, showing up when I was a small child.  It has haunted me for most of my life.  In the dream,  I am going about a normal day, when I notice that a tooth is loose.  And when I wiggle it, the tooth pops out in my hand.  Horror fills me as I realize that the tooth has come out.  My permanent tooth!  I tell someone… whoever is with me in the dream.  They seem unconcerned.   I dial the dentist’s office.  And while I scramble to tell people what is happening, or make an emergency appointment, my teeth become loose and fall out, one by one.   I feel completely out of control.  Helpless and panicked.  Permanent damage is being done, and there is no reaction, I can’t stop it, I can’t find someone who can stop it.

I haven’t had that dream for many years.  Maybe because I have climbed inside of that nightmare.   I am living in it now.  That feeling of helplessness and desperation.   We are living with something no one has heard of.  There is little known about it.  Our doctors haven’t heard of it.  Psychologists.  Therapists.  The few that know it, can not agree on what it is.  A psychiatric disorder?  A neurological disorder? A hearing problem?  A sensory integration disorder?  An autism spectrum-symptom?  A behavior problem?  The sensation of absolute helplessness is paralyzing.  I have no control.  I have no where to turn.

Why I am writing this?  This private, personal account of what really happens at our house, around the dinner table?

During the summer of 2012, misophonia had already slithered its way into our lives.  It’s presence a snake, coiled and waiting.  Watching us.  I had a sense it was there, but only that unease that comes as a premonition before the strike.   When it struck, here, andhere,  I did what most sane, reasonable parents do.  I turned to the internet.  And there, I found almost nothing.  The info that I did find was less than encouraging.  It still haunts me, the things that I read that summer.  About families that can not live together.  About kids who leave home and never come back.  About mothers or fathers or siblings that are lost to each other, unable to overcome these tiny, imperceptible, everyday noises that scratch at Lydia’s brain like nails on a chalkboard.

There was a blog, I wish I could remember the name of it.  One blog.  And the mom who wrote it, posted about her son, and his misophonia.  All of the things they had tried.  All of the medication, and therapies and specialists that were not helping.  About dinner time.  But what left the lasting  impression was one sentence.

“We are in crisis over here.”

It was the most comforting thing I have read about misophonia.   I think of her often, and her willingness to admit it.  The crisis.  “Me too,”  I thought.

Knowing I was not alone was everything.

We are trying things.  We are draining our energy, our time, our savings account, trying to find help.  On the outside, we look like a normal, everyday family of five.  Mini van, soccer cleats, playdates, preschool art projects, birthday parties, piano recitals.  On the inside, if you came to visit, you would see a functioning family.  Home cooked meals, sibling squabbles, love notes, piles of laundry, homework unpacked on the coffee table.

Maybe we are a normal everyday family of five.

And everyone has something that makes them feel out of control.  Helpless.  Terrified.  Alone.

Are we all there?  Walking around with our teeth falling into our palms?  Clinging to the stories of the other people?   Gathering gratitude like seashells in a bucket, talismans of the burdens that we don’t have to carry?

The one thing I can do is step forward.  Use my voice, and say it when I can.

Me, too.   Me too.

source;http://megpoulinindeed.com

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