Madness, Uncategorized

Misofonia Blues

Misophonia Blues

Biting, tearing, gripping, ripping
Slipping
Spewing, chewing, gnawing, mauling
Falling
SNAP! POP! MUNCH! CRUNCH!
Hunched
Licky, sticky, slick, breaking, quaking, shaking,
Sick
Slice, scratch, screech, slurp,
Lurch
Gnash. gnosh, wash, slosh, crush, flush,
Rush in
Thin grin, smile fake, small talk, balk
Walk
Smear, sneer, fear, anger
DANGER
Reaction, distraction, destruction
Lonely
Neurons fire, so tired, wired
Misophonia mired

I suffer from misophonia. It is a disorder generally defined as hatred of sound. That doesn’t quite begin to cover it though. People who have misophonia have involuntary and uncontrollable emotional and physical reactions to their trigger sounds. The trigger sounds are not the same for everyone. For most people they can include but are not limited to things like silverware scraping on teeth or plates, chewing, slurping, snapping gum, burping, swallowing, and other bodily noises and repetitive sounds such as typing, pencil tapping, dripping water and other low level noises that most people barely even notice. Some are even triggered by visual stimuli along with sound triggers.

Misophonia is not classified as a psychiatric or hearing disorder. There is some evidence to suggest that it is neurological and/or related to autism and sensory processing disorders. It is fairly rare, affecting only about 15% of the adult population. It may be more common, or at least more sever, in women.

No one is certain what causes Misophonia and there is currently no cure. There are very few treatments or therapy options. Most suggested options involve treating the associated anxiety responses rather than the disorder itself. Mindful self care habits to reduce anxiety and troubleshooting for yourself in the moment with headphones/earbuds, increasing background nose when possible or simply excusing yourself and escaping the triggers are the main treatment suggestions I’ve found.

To someone who suffers from misophonia, the sound and visual triggers can elicit responses from mild discomfort and irritation to rage and even panic. It activates a fight or flight response and a strong need to flee the situation. Mealtimes and other experiences that are pleasant or at least tolerable for most people can be torture.

For me, it started in my early childhood. My first memory of being adversely affected by sounds and visuals that didn’t seem to bother other people was around age 6 or 7. The disorder really didn’t have a name then. It was not until 2000 that audiologists, Pawel and Margaret Jastreboff (wikipedia) gave it a name during their research on other forms of decreased sound tolerance.
I didn’t even know it had a name until a year or two ago. I just thought I was irrational and crazy or that it was just another part of my ptsd and general anxiety. I only told my family about it after that. I think my grandmother and mother knew when I was younger though, but it was just one of those sensitive child things. Fortunately they were compassionate and tried to help whenever possible by offering me buffers from certain sounds and experiences.

So I’ve spent most of my life coping by just winging it. It’s worse when I’m already anxious about anything else and then encounter my personal misophonia triggers. I experience panic and anxiety and am generally miserable in the moment. It’s exhausting and takes time to calm down afterward. A silent room at mealtime or experiencing my triggers in stereo in a movie theater is sheer torture. I’m not exaggerating–I promise.

I manage it with distractions, tv or music during dinner or a crowded restaurant with lots of ambient noise. I work pretty hard not to be rude or to be a bother or to even be noticed when I’m triggered and in distress. I cannot always use headphones or earbuds to manage it. (The sounds of my own chewing and associated sounds are louder in my own head with earbuds on–it’s like an echo chamber!). Ambient noise and music are not always enough to mask the sounds or distract me. I often try to wait until everyone else is finished eating or eat before they do if possible, especially since there is also a strong visual aspect to my triggers. It is difficult to convey this clearly to anyone who does not also suffer from misophonia.

I discovered ASMR (autonomous sensory meridian response) around the same time I learned that my disorder had a name. ASMR is also relatively new and describes a feeling of euphoric tingling and relaxation that can come over someone in response to certain videos or sounds. I understand misophonia as the dark mirror universe of ASMR. It is the direct opposite, though there are some overlaps I’ve found. Some ASMR stimuli that give people euphoria are torture for me, but there are some that I find calming and pleasurable as well. The connections are fascinating and disturbing all at once to me.

I resisted telling anyone about my misophonia for years. Learning it had a name helped give it validity and helped me to know I wasn’t completely crazy. Discovering ASMR helped me find language to articulate what I’m feeling.

Anytime I consider telling someone, I’m torn. Although it is a great relief to have understanding and support from my loved ones when I am triggered, knowledge of my possible reactions often makes people self conscious and weird around me or worse. There are people in my life who would find it amusing to push my buttons if they know there are buttons to push.

At the end of the day though, I know that if I was suffering in silence and fear and frustration, others must be suffering too. It’s a pretty lonely headspace in which to exist. Burdens shared are a bit easier to manage. That is the guiding light of my existence. My moral compass directs me to shine a light in dark places whenever possible. Whenever I can find the strength to do so, I try to live by that. So here I am. If misophonia is making your life a living hell, you are not alone, though you may be eating alone. Your self care is important. You are not crazy.

If someone you love suffers from misophonia, please take them seriously and be compassionate. Ask them what they need–don’t assume, don’t judge. Try to help if they ask, but don’t call them out over it.

As always, I’m willing to listen if you need to talk or answer questions if I can.

Meanwhile, here are a few resources (there new things to learn about it all the time. Google often)

https://allergictosound.com/

https://sensoryhealth.org/basic/misophonia

https://misophonia-association.org/resources/

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Madness, Memoir, Menagerie, Uncategorized

RPGs and PTSD or How Gaming Turned into Therapy

(originally written April, 2020)

I have a long and complex personal history with RPG’s (role playing games). I started playing Dungeons & Dragons in high school with a boyfriend. During the time I was dating him, he used elements of gaming as one of several methods of manipulation and psychological abuse. Further in, the abuse turned physical. I came out of that time with very few memories of actual game play. I remembered the characters I created and minimal mechanics of how to play. I also came out of the experience with understandably mixed feelings about gaming, role playing of any kind along with so much other baggage that mixed together in a crazy anxiety stew.


I’ve always loved all of the elements that led to the creation of Dungeons & Dragons and other RPG’s. I’ve been a Tolkien fan practically since birth. Fairy tales, Fantasy and Science Fiction have been my go to reading since before I could read at all. I was ever the child who believed in fairies. As an adult I still do. My childhood was filled with all of the games of pretend and imagination. Role play was already second nature long before I knew D&D existed in its own right. I love character creation, storybuilding, fantasy art–I was built hard-wired for RPG’s. But that was corrupted in the blink of an eye for me.
Many of my friends have always been gamers. They’re my tribe. So in my 20’s, when I still could not feel safe participating in game play, I sat in on sessions with my friends–watching, listening to the stories grow through the games they played, and sketching. I enjoyed the atmosphere even though it felt too scary to join in. The visions they conjured as they played fed my imagination and my art. I felt certain I would never play again, though I’ve held onto my original set of dice to this day. They’re colorful, sparkly and they still felt good to hold and to look at the light shining through them. And I guess some part of me refused to fully admit defeat. I had a tiny spark of hope that I might someday use them again.


A few years ago, I saw light shining into my self inflicted darkness. ( here I should point out that I am fully aware that the trauma was never my fault, but continuing to hide from something I knew I’d probably enjoy was entirely a self made prison.) The timing might finally be right, after more than 25 years since I left the boyfriend and his abuse behind.


I’d known from before we started dating that Zen and his husband were gamers. I tuned out his stories of gaming because I couldn’t face this thing I wanted to do but felt I couldn’t do. My husband also enjoyed gaming when we first married. I sat in on their games too, but life had taken us away from that experience so he had not done any gaming himself for maybe 10 years or more.


I felt scared and intimidated by trying to learn a new thing while fighting off panic and anxiety that I had always felt around gaming and adding up the numbers quickly and under perceived pressure. When I feel anxious or triggered my brain can’t do any of the things that should come easily. That kind of compounds any other fears or anxieties already present.


One day Zen told me how much his husband, Paul, loved sharing his love of gaming with newbie. He loves teaching new people how to play. He has infinite patience with the often clumsy newbie. I tentatively reached out and asked if we could try it to see if I could do this.


Paul chose a game system that only uses d10’s (10 sided dice). That simplified everything. That reduced the pressure and anxiety by half at least for me. The game was Vampire: the Masquerade.


At first, it was just the four of us with Paul as the storyteller, or game master. (GM). Keeping the group very small gave me a sense of safety as I learned. Once I began to feel more secure in my role and in my skills, we added a few more friends to our group. Then we started exploring other systems using d20’s and all the other dice too. I still get anxious and stressed at the beginning of a gaming session, but I can feel even that easing up little by little with every new session.


We’ve been playing for about three years together now, and I look forward to gaming no matter what system we’re playing. I know that if I begin to fall, my group will catch me and show me the way back to where I need to be, with patience and love and lots of fun. Gaming has provided a creative outlet, therapeutic benefits, new ways to apply my own creativity, new friends, new ways to interact with friends and strangers alike and more opportunities for growth with every session.


And an ongoing obsession with shiny, sparkly, colorful dice! I still use my original dice too. Only now I have several other sets, despite some guy at a local gaming store questioning my choices in dice purchasing. Sad customer service aside, I’m certain one can never have too many dice sets…


And now, with social distancing in place, I’ve been battling my difficulties with technology. We’re using Discord for gaming. I find technology challenging, daunting and stressful. But I’m not letting that stop me. Tomorrow, I’ll participate in a third gaming session using Discord chat and digital dice apps. Soon, even that won’t phase me much.


It may not seem like such a big thing to most people. Gaming is even regarded as ridiculous and frivolous to some. But to have reclaimed that piece of myself in this way has been profoundly empowering. To have friends and lovers who cared enough to help me reach this point makes me feel wealthy beyond measure. My gratitude for this gift is limitless.

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Madness, Memoir, Uncategorized

This is Me

Last night in the mirror I saw her again.

The other, stronger, edgier me. The one who is comfortable in her skin. The one who loves herself unconditionally.

She is the one who loves ME unconditionally. She loved me enough to leave dangerous relationships. She helps me love myself unconditionally. She is me. When she is in the driver’s seat I love myself. I am strong. Her smile, my smile, when she shines out of it, is so strong, so confident and so beautiful. I do not know why I don’t see that beauty when she is buried deep inside me, sleeping.

Though I can always feel her crying out, beating down the doors, trying to get out again.

The first time I saw her I was afraid of her,  afraid of becoming her. I was afraid of her fire, of her power, her storm. I had been broken for so long that I could not comprehend or envision what a whole, strong, powerful me might be. In a way, I was afraid to put myself back together. I was afraid of who I could be if I were whole.

When I was younger, a teenager, I was so completely myself. I was an individual, not like anyone else at all. People had no idea what to do with me. I refused to be boxed neatly–there was no box that could hold me. As the years went by, through the rape and abuse I suffered at the hands of my first boyfriend and later with my ex-husband, I was broken and boxed and shelved.

It has been a difficult journey back to myself. To wholeness. Breaking out of that box again has been a slow process. Sometimes now I find it challenging to live without allowing myself to be boxed and shelved all over again. It can feel simpler to take the easy way and be who others think I should be.

But I know, I’ve always known in my heart of hearts that it is infinitely better and more rewarding to be the butterfly storm I was always meant to be than to jam myself back into that tiny, ill-fitting cocoon.

 

I am meant to fly.

 

I am an artist.

 

I am that dark and shining, smiling woman I saw in the mirror.

 

I am beautiful.

 

I am a storm and I do not belong in a box.

Rebirth

 

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Madness, Memoir, Uncategorized

me too

Yeah. I know this is already a thing you may be tired of seeing on your social media feed. I’m tired of seeing it too. I’m tired of knowing that so many of my sisters–AND BROTHERS- out there have been assaulted, abused, harassed. I know that those are now becoming just words, sad words, but just words that you are already glancing over with numbness. I’m tired of needing to feel numb to the pain just to get through another day.

I’m tired of feeling numb! I’m also tired of the endless anxiety, fear, exhaustion, flashbacks and panic attacks that I experience anywhere from once a month to sometimes several times a day.

I’m tired of knowing that somewhere out there my abuser still walks free. Free to hurt other people. Free because, like so many people, I didn’t report him or his crime. I didn’t report it because for so long I didn’t even realize what had happened to me.

I could not even begin to comprehend it all. By the time I knew, understood and wanted justice, it felt too late, too impossible, too crazy a story anyway. Who would believe me? Who would listen and understand? and Why would they?

I’m sick of being silent about it so I won’t upset someone with my story. I don’t want to cause anyone to feel what I feel when triggered. But I do want to shake all of us out this numb state so that something can be done to help all of us, to stop the violence committed by the bigger, stronger, more powerful, more affluent on the weaker, more timid, fearful, poor, ordinary women and children in our lives.

I’m sick of walking on eggshells for the comfort of polite society. I HURT.

All my sisters -and brothers- HURT. EVERY. DAY.

I have worked hard every day for the past 30 years or so to conquer my panic, anxiety, and fear. There have been successes and failures. Good days and bad. It will always be with me, no matter how much healing takes place. It hit me in places I didn’t know I had.

Still does.

I spent several years introducing myself as a rape survivor to almost every new person I met. It was a way to cope, to try to understand myself better. Sure, I had therapy and it helped so much. Therapy, along with my super supportive husband, helped more than anything. Not everyone has that opportunity. Therapy is expensive. And sometimes you just need the validation of having one person hear you, listen and say ‘I believe you and I love you.’

I also created art to deal with my pain. This art remains in a closet because it’s raw and visceral and painful to see. I’m never sure if it’s ok to show to people.  I no longer tell my story at all, unless it seems like something a given person might want to know. I hate to bother people with it. It’s ugly and painful. I don’t want to be judged for any part of it.

I’m tired of hiding my story and my art. We need to stop hiding, stop judging victims. There are women hiding their pain, afraid to share their own ‘me too’ because they may be in danger even now or they may simply be afraid of being judged. ‘Why did you stay?’ is a question I hear over and over. Domestic violence was also a thing in my life.

Rape and domestic violence go hand in hand for many.

If we, the ones who got out, stop hiding and judging, the world becomes a safer place for women -and men- to ask for help.  No, you don’t have to absorb someone’s pain if you cannot handle it. Just be there. Standing up. Saying “me too”. This alone is powerful and will give courage to someone else.

If you are hiding your pain, your story, afraid to say ‘me too’ out loud, then say it softly. Whisper it. Tell someone you trust. Ask for help. Ask someone to just listen if that’s all you need.

Ask me.

Tell me your story. I’ll believe you and I’ll even cry with you. I’ll tell you my story if you ask. I’ll keep it to myself if it hurts you too much to hear it. But I will not keep quiet the fact that it happened. That I did not deserve it. That it’s ok to feel what I feel now. and That it’s NOT ok that someone hurt you, me or anyone else.

I’m here. living. loving. hurting and healing. and listening.  I love you.

Conditioned Soul

Conditioned Soul

 

 

 

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Memoir, Musical Monologues, Uncategorized

Jumbled Thoughts

Thoughts jumbled

Voices mumble

Feelings rumble

World crumbles…

 

This sums up how my year has gone so far. Just before the turn of the year, Grandmother fell and broke her hip. I knew in my heart somehow that this was the beginning of the end for her. I guess we all did, but no one wanted to say it really. I regret nothing of the time spent sitting with her, watching, waiting, loving, living as she slipped away more every day. I am thankful I was there, sad that I wasn’t able to be there more. I don’t long to say more to her, to tell her things she didn’t know. She knew all of me. She built most of the world that gave me my foundations.  So I have no regrets. I know my roots. She gave me my wings. I watched as she earned hers by degrees. I was not there as she finally let go. And that, too, is ok. I am content that she finished what she came to earth to do. Momentary Sparkle

Still, there is a hole in my life without her. I have not had the luxury of time to truly grieve yet. I’ve been doing it in small chunks. A moment here with a photo, a moment there with tiny treasures that bring her smile back to me. Bits of paper and string, little pencils, old dolls, precious unfinished quilt pieces, fragments of memories, notes she wrote that turn up in my books, cards and letters she wrote–all of these have been signposts on my journey as I inch along, not yet ready to pull off the road and give them my attention. Not yet ready to fully feel whatever it is that longs to be felt. I am stubbornly not yet willing to allow anything to fill that empty space. img001

But empty spaces have a way of filling themselves sometimes. So my year has been full to the brim with busy. I’ve paid tribute to all that she taught me, each and every day since she left us. I have created more new work in this year than in any other since I began sewing professionally. I have cried into my stitching, blurry from all the tears and ripped it all out again countless times so far and the year isn’t over yet. I have shared stories and buttons and tiny treasures. I have felt joy and pride that she gave me the skills to change lives and hearts with the work of my hands. In the same breath, I have turned to the phone to call and tell her something new I learned or to ask her if she’d ever tried this or that craft, only to remember I can’t reach her now. wp-image-1354251400jpeg.jpeg

I have felt deeply the imminent loss of my childhood home–this, a grief so deep it surprised me, and few could comprehend my attachment to it.  It was my sanctuary, more than any other place I’ve ever been. It was where all my stories began and where some of them ended. It was where I learned about music and art and sewing too. It was the place where my imagination took wing and I knew I could do anything if I worked hard. Home was where I could return to nourish my aching spirit after all the times my world crumbled. It was simply home.

The year has felt like one crisis after another with no breaks, no vacations, no end in sight. My work has been behind deadlines all year. I have worked day after day after day, numb and in an endless hurry to finish so I could go on to the next thing. Even my writing, the thing which I felt was so healing, has fallen to the side in the face of deadlines. My health, too was suffering earlier in the summer. I’m slowly getting back on track.  Our family is now turning our attention to helping with all the random and myriad things that are so necessary to support our graduating high school senior. I don’t want to miss a moment of his senior year. I want to hold onto each one and it is all flying by so fast.

There still is no long week of leisure time ahead in sight for me. I will continue to seek out those bits of memories, fragments of precious time with my children and those moments of bliss when I see I’ve made a customer love who they see in the mirror in my studio. This post was not meant to sound like complaint but to remind myself to cherish what I have and with whom I have it all. Everything is bittersweet this year. I cannot even begin to consider what the holidays will look like without her, but I promise to hold you all close and to tell you I love you. And I do. I love each and every one of you. Thanks for reading.20170507_192620_optimized

 

 

 

I

 

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Madness, Muse, Uncategorized

jumble 5/6/17

I am finally alone for a day and have time to do things. My mind and to do lists are so full I don’t think I can prioritize. I feel paralyzed with all the many things I need to do, want to do. I am energized and exhausted all at once. I think I truly need a day of emptiness. A day of nothing. It’s too cold to go and sit by the lake. But sitting here at my desk or at home, I can feel all the ‘to do’s’ calling to me. It is not relaxing. Not helpful. Even the words aren’t really flowing for writing. At least the silence is restful. I can embrace the silence today, float on its soft, comforting ocean. Maybe I will just drift with its currents for a while. I wish it could last for a week. With this space to be quiet and rest I could calm my thoughts and begin to let go of the racket of day to day life for a time. I could begin to hear the song of what is most important and forget the rest. There is too much noise in the day to day. Too many lesser things crying out to be heard and drowning out vital needs, pushing aside things my heart needs. No harmony, only dissonance. I find now that I wish to hear the sweet melody of simplicity rising above the chaos. I wish to let go of the fear and worry and just be in the moment. I have long since forgotten how to do this consciously. Sometimes it happens by accident and is the sweetest surprise. I try to hold on to this fleeting experience but that is counter productive and takes me out of the present. I cannot get back to it with all my pushing and pulling. It’s like fighting the water and drowning instead of remembering to be still and simply float.

raindrops in pool edited

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