Wednesday, November 27, 2019

Sensory Meltdowns and Shutdowns are Not Panic Attacks

How do I know that? Because I'm having a panic attack right now . . .


Or, well, I was when I wrote the start of this post a few months ago.

My life had been turned upside-down by the person I trusted the most in this world - the one person who should've put the needs of his family above his own, as I'd always done. As we're all supposed to do. Instead, I'd woken up to the aftermath of a real-life Law and Order SVU episode. Olivia Benson, where were you when I needed you the most?

That morning was also, I imagine, how it might feel to wake up to the day after a devastating natural disaster: a high magnitude earthquake, say, or ancient Pompeii the morning after the eruption of Mount Vesuvius. I'd unknowingly survived the major event - slept right through it, really - and while it felt like the earth had spun straight off its axis, the rest of the world marched calmly forward. My apartment was intact. My daughter was eating her waffle. I sat silently at our dining room table, our nanny watching me closely. The emotional debris of such destruction hit me in waves. The first wave came on with a series of new sensations. It felt like somewhere inside of me, someone was trying to smother me with a pillow. My chest felt heavy and tight. My breathing became quick. My heart ached. I kept trying to catch my breath, but instead I become overcome by heaving tears. I stepped away into the bathroom, panting and sobbing and shaking.

What it wasn't: a sensory meltdown. I've had so many of these episodes in my life.
What these feel like: sudden overwhelm by sensory stimuli - too much noise, too much movement, too much to see - and an inability to escape. Dark clouds, a flood of tears, and in time, a groggy waking up to the world as if I'd never melted down in the first place.

What it wasn't: a sensory shutdown. I've had so many of these episodes in my life too.
What these feel like: a disconnection from the body and environment, triggered by an overwhelming amount of sensory input and an inability to make sense of all of it at once. A feeling that no matter what I do, I'll be lost inside of myself forever. Passes in time in a quiet, safe space. Scarier than it sounds.

What it was: a panic attack.

And not just a panic attack, my first-ever panic attack. In the middle of the tight-chested panting, through the pile of filth my former partner stranded me in, I somehow had the clarity of mind to think: huh. Funny. So this is a panic attack. For decades, professionals thought my sensory meltdowns and shutdowns were panic attacks and that I had Panic Disorder. It was my official diagnosis according to the gods of psychology and the authors of the DSM. I did Cognitive Behavioral Therapy, Exposure Therapy, Biofeedback - everything they could think of to reduce my panic symptoms. Except nothing really reduced these symptoms and no one could tell me why I had these "attacks" mostly in the presence of bright lights and loud sounds - and often at night. It was an ill-fitting diagnosis with symptoms that almost matched the descriptions of my experiences. Almost but not quite.

Friends, we now know I never had panic symptoms. I had undiagnosed Sensory Processing Disorder (SPD). I had my first panic attack at age 36 when my life came crashing down around me. You know, as most of us would.

The weird thing is, as uncomfortable as that panic attack was, it was NOTHING compared to the sensory challenges I've faced in my life. When the first one was over, I was like: okay, that was it? Cool, because a meltdown is way harder and a shutdown is way scarier. And maybe this isn't the case for everyone, but it was for me - even as I had panic attacks over the next few weeks that followed. The worst were the ones right before bed, when the air was still and quiet and I had to sit very much alone with the enormity of what happened to me and my daughter. The more I worked on the traumas I'd endured in September with my therapist, the better the panic attacks got, until they stopped happening altogether.

I think it's important that we work to distinguish what we're experiencing, as sensory people. Because SPD is still largely misunderstood and misdiagnosed by so many, we're quick to lump all sensory happenings into the panic attack bucket. I think it's because we're more familiar as a society with psychological terms and diagnoses and not as comfortable with neurological differences. But meltdowns, shutdowns, and panic attacks are not the same thing. Two are the result of a differently wired brain contending with a demanding sensory world. One is the result of anxiety overloading a system. Two we learn to live with because they're a part of our neurodiverse makeup. One can be helped through psychotherapy. All are difficult. All are part of the human experience as a whole. But they're not the same.

I'm not thankful for what happened here in early September. How could I be? Two weeks after that morning, I was injured in a bizarre accident involving a toddler, a forehead, and a step stool. I carry a scar above my left eye now. When I look in the mirror at that crooked red line, I remember everything: the waking up to a new role, a new me, a new life I didn't ask for or see coming. I carry all sorts of scars with me, externally and internally, as I continue to move into the future. But strangely, I'm thankful to have experienced a panic attack, if only so I could put to bed my original misdiagnosis. A strange token to pull from the mountains of rubble.

Friday, September 13, 2019

On the Loss of a Handler (or Skydiving Without a Parachute)

Let me start by saying I never expected to have to write this post. Not for a very, very long time. And allow me to clarify what I mean by loss: my handler is alive. He is not lost to the world, just lost to me. After making a series of hurtful, selfish, and inexcusable decisions that put me and my child at risk, I have had no choice but to escort my handler out of the life we've shared for a decade.

In short: this week's been a living nightmare filled with actions I never thought I'd have to take and more sadness and anger than I ever anticipated I'd encounter.

Losing a handler is like losing your parachute mid-jump. You pull the handle only to realize that you're falling fast without the gear you've necessarily relied upon guiding you safely down. There's a sense of surreality, finality: a quickly approaching landscape and a new future you never intended to face.

In searching for an image to convey this sentiment, I came across an article about skydiving without a parachute. It asked: can you survive a free fall without one? The answer: surprisingly, yes. The article goes on to ask, what should you do if you find yourself falling without a parachute? The first thing you have to do is stop panicking. It goes on to say, you need to quickly look for the best landing spot and aim at it. I'll admit that their further guidance on body positioning to avoid getting water up your nose isn't as helpful in this scenario.

But their first two points are valid:

1. Stop panicking.
2. Aim at a landing spot.

Apparently, a person dealing with such trauma only has to read articles about extreme sports to learn how best to cope. And maybe it's because life - with or without neurological differences - is an extreme sport (I'm liking this analogy, so bear with me, readers). We are all always a single moment and a single decision away from skydiving without a parachute.

I'm going to try to stop panicking. Panicking won't soften the descent, it'll only impact me as the level-headed parachuter. Through the quickly passing clouds, down on the ground, I'm starting to see a crowd of people. They have blankets, pillows, trampolines, and signs. Their arms are raised in love and cheer. They're my family, my friends, my colleagues, my support network.

I'm aiming at them. It's there I will land.

Wednesday, June 5, 2019

Play-Do? Play-No.

Nearly nine years into my official SPD journey and I'm still uncovering sensory input that I just can't stand. The most recent offender? Our daughter's seemingly most innocuous artsy-play-thing: playdough. It's colorful, transformable, and relatively neat as artsy-play-things go. Who doesn't love playdough? Friends, I don't love playdough. I don't even like playdough. 

This is a weird revelation for this 80s-90s kid who absolutely adored packaged playdough. I have a childhood scent-memory of making wheaty vanilla braids on my grandma's Floridian lanai; taking a short break from snapping open her tiny pair of opera glasses, my favorite of her knickknacks. It's one of those precious memories, tucked away in that warm place where vivid moments of the past thrive. When I think about it, I'm instantly and happily transported back to a very cozy time.

So imagine my joy when our toddler turned two and we could finally break out the colorful wads and start creating. I was a child of playdough. I am not an adult of playdough. Now, I am hyper-aware of my hands - or rather, the residue playdoughs of all kinds leave on them. I can't stand the smell, the gummy feeling, the give as I roll the mass into shapes that delight our daughter. I feel myself become increasingly finicky in my skin; my blood starts to pulse angrily through my veins. I have the urge to run.

The other day, I had what I thought was a brilliant idea: make playdough from scratch! Everything is better from scratch, right? Besides, I've made my fair share of playdough: I dabbled as a preschool teacher for a hot minute in my early 20s. Our daughter ran for her step stool and together we mixed, dyed, and kneaded the dough. She was thrilled. It was gorgeous. I felt like Super Mom in all of her heroic glory, a human Pinterest success story. And then we got down to playing with the dough. I had to suppress an actual gag. It was essentially the same sensory experience as the packaged stuff.

I'm not here to present a solution. I mean, I've considered chucking all of our playdough out the window while shouting expletives, but it wouldn't be productive and I'm pretty sure I'd make our daughter cry. I typically try to wait for my husband to walk in the room so I can direct our daughter to him. When he's not around, I'm a big fan of distraction (shiny thing! Let's go see!) and if all else fails, I cringe my way through playdough. All sensory experiences are temporary, anyhow. I know that. I'm just fascinated that my sensory complexities continue to reveal themselves after so long.

Friday, March 15, 2019

Six Scenes of Sickness in a Sensory Life


I'm lying on a cot in the nurse's office at school staring blankly at the light blue walls, waiting. The table is lined with crinkly paper that sticks to my arms and the pillow is lumpy and unfamiliar. The lights feel brighter than usual. It's one of those waiting-to-get-picked-up visits, one of those I-was-sick-earlier-in-the-week visits. One of those my-senses-haven't-recovered-yet-but-no-one-realizes-it visits. I can't explain my symptoms because, in the traditional sense, I don't have any.


On the tv: The Muppet Show. It's the only thing I can make sense of through the haze of Flu. I picture myself as Miss Piggy, beautiful, bold, and pink with those envious golden locks, winning the heart of humble, sweet, sincere Kermit. And then a myriad of muppets begin to sing. My body instantly overflows with fear. I can't hear them, see them, and be in my sick body at the same time. The tv goes off, and I'm escorted down the carpeted hallway toward the bedroom, unsure why I can't feel a single foot fall on the floor or my limbs in motion through space.


I'm barefoot and standing over the shallow end of the pool in early August. A swarm of campers shout and splash from all sides of the bustling rectangle. Through the chain-link fence, the weeping willows are gently tossed by the warm wind, but I'm shivering, even though my insides are burning. My favorite camper hoists herself over the lip of the pool and scuttles past me to retrieve her towel. As she does, pool water is dashed across my skin, and it feels painful, like tiny shards of glass.


When my college roommate finds me, I'm on the floor near the bathroom sinks, muttering about schooners. It's where I'd fallen when the walls started to tip. As for the schooners, they're all I can see: tall, masted ships tossed in an angry sea. The word crashing like waves - schooner, schooner -until I am the words and the billowing sails. She helps me to my feet and walks me back down the hallway. I don a hoodie and some jeans, and we slowly make our way up the hill and around the bend toward the health center. The nurse is concerned. It surprises neither of us that I am dangerously dehydrated, delirious, and in dire need of rest. My family makes the long drive to retrieve me.


They call it Mono, but the tests come back negative, and so I eat the occasional Chipwich and sprawl across my bed, unable and unwilling to budge. Weeks of lethargy are punctuated by tiny sojourns outdoors, where I squint at the harsh, ceaseless motion of taxis, buses, and people around me before hastening back indoors to the safety of my apartment.


Our little one succumbs first and then we follow suit. It's not the Flu, but it sure feels like it - in spite of the shot, in spite of the test results. It's been so many nights of broken sleep: cradling, instead, a tiny body as warm as a roast turkey just pulled from the holiday oven.

I remove my hearty, noise-reducing earmuffs and peel off my weighted lap pad before crossing from bedroom office into the living room. There, she colors with chalk, smiling: her highest fever finally, dramatically diminished. Two days behind her in health, my handler stands watching - a picture of my own future well-being. They are my maps, my guides. My head pounds and my torso aches. He pulls me into a full-body hug, the way my body craves. Below, she points gleefully to her masterpiece and cries: "elephant!"