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!"

Monday, September 24, 2018

The Great Weighted Sleep Mask Hunt

Yes, I know - I have become an unreliable blogger! I am so sorry for that. If you've ever had SPD, a toddler, a husband, and a full-time job, then you know that blogging is a luxury reserved for stolen moments of solitude - or if you just must share something new and exciting.

And that's what brings me here today.

Sensory Friends - after seven years . . . I have finally found - and purchased - a new, ever-elusive weighted sleep mask!

What's that? I think I hear one sort-of bored reader mouthing a half-hearted yay

Sorry if this isn't as exciting as you'd hoped. It's not always exciting over here. Or maybe it's that as a mom, things are rarely for me or about me. But imagine this: discovering a package at the door with your name on it. You forget, just for a brief moment, that you placed an order for something you need and haven't been able to find, and you tear open the yellow packaging with your hands and extract the precious bundle. The reason this particular bundle is especially precious is that, for the past six years, I have been looking for a weighted sleep mask. Any weighted sleep mask. 

You may remember this post from August 2011 when, inspired by a simple action by my clever handler, I bought a weighted sleep mask from a vendor on Etsy and my sleeping life changed forever. I loved it so much that I immediately bought a second one, and soon after, the shop closed - and then morphed. Whatever the case, the sleep mask with the strap disappeared.

I watched my beloved masks deteriorate with quiet worry. I'd googled "weighted sleep mask" multiple times over the past few years to find nothing. I went so far as to accost a lovely husband-wife weighted product maker team at an SPD conference on the west coast to encourage them to develop one for me. The wife said she'd never heard of weighted sleep masks for people with sensory issues.

Apparently, I was the only sensory weirdo who needed to sleep with weight on my face. 

Seven years later, after wearing it for over 2,500 nights, my newest mask was crumbling into bits in my hand. What was once a luxurious poofy pink mask had turned into what amounted to a drowned Muppet on a thinning string. And then last week, just when I thought my search was futile, I stumbled upon this beauty:

The only problem? It's made by Gravity, a company I'd seen crop up on the news in the past year touting weighted blankets as if they invented them. As a person with a neurological difference who's been using a weighted blanket since my diagnosis, I sneered at Gravity. Surely, I thought, you can't believe you came up with this concept - you just captured the collective's attention by marketing your products better. But you know the old adage, sleep mask beggers can't be sleep mask choosers  (or something like that), and I bought one. 

Aside from the satin lining on the side that goes against my eyes (a short-lasting chilly, awkward sensation when I'm used to warm fluffy against my eyelids), the mask is perfect. The strap seems hearty and there's no velcro looming that might cause the strap to pull away from the sides (or scratch a delicate face in a sleepy state). The website says it's about a pound of weight distributed across the face, which - to me, at least - feels ideal. 

Want the best weighted blanket of your life? Go see Keith Zivalich at Magic Weighted Blanket - I own two chenille blankets and one weighted scarf that acts as a multipurpose wonder-weight for every situation. I'd bet many nights' sleep that you'd love their delicious blankets.

But if you want to take your need for deep-pressure touch and proprioceptive-grounding to the next level with a weighted sleep mask, Gravity is the best game in town.

Sweet sensory dreams, friends.

Thursday, March 22, 2018

Sometimes I Still Feel the Bruise

Dear Sensory Friends,

I have a confession: I am injury-prone.

I'm sticking to this story.

Actually, saying that is like saying I like dark chocolate, when in reality, the truth is much closer to if I don't eat at least a square of dark chocolate once a day, I turn into a red-eyed demonic force haunted by the very thought that chocolate exists and I presently don't have any in my possession. 

So maybe it's more like: I am a human bruise. I am the human embodiment of bruising.

I honestly don't think my body is ever entirely unbruised, if that's even a word. Instead, I am like a madman's canvas of blues and purples, and 95% of the time, I can't tell you what I walked into or what object tumbled down on me to cause such epidermal trauma. What's this from? a caring friend or family member might ask, pointing at my colorful calf or forearm. Huh, I'll say, momentarily regarding the spot, this is the first time I'm seeing it. (What I can tell you with certainty is based on my perpetual bruising, I must always, always, always walking and banging into things.)

About 5% of the time, I am all too aware of the bruise's origin. Like the moment last week, with my toddler daughter's dinner in both hands, that I walked straight into the metal-tipped edge of a safety gate so hard that a dime-sized spot, rimmed in crimson, immediately appeared on my leg. I can't remember what unfortunate obscenities I screamed (or how loudly the sound), but I watched with fascination as the patch spread and changed colors over the course of the next few days, until it faded away.

And then there was the incident Monday night, when I managed to lose my grasp on a rather large can as I attempted to put it on a rather high pantry shelf, and it came crashing down on my toe. I'm pretty sure I blacked out for a few minutes there as I knelt over my foot, mewing and crying like an injured cat. With the intensity of pain came the waves of nausea and then, for me at least, the inevitable feeling that I was, indeed, going to pass out - something that I found both comforting confusing in the moment. I was so close to the floor I wouldn't have far to go if I fainted. My Handler, having run into our living room from the kitchen with a bag of ice, helped me sprawl out as I made animal noises that echoed down the hallway. Mine was a distracting, throbbing pain. I popped a few Advil, gingerly taped the poor toe to its neighbor, and woke up in the morning hoping it wasn't actually broken. Spoiler alert: it wasn't. (I can do many things, but tending to a spirited 13-month-old while wearing a cast is not on my most immediate bucket list.)

We all bruise, I hear you say. Everyone gets hurt! And yes, this is true, but for those of us with SPD, especially those of us who find it impossible to connect our bodies to the outside world, we are even more at risk. If I can't properly locate my hand in space and how it connects to my wrist, and my hand is holding a sizable, heavy can, then it only makes sense that I would find a way to drop it. If I can't properly locate my leg in space and how it connects to my knee and ankle, then it only makes sense that I would find a way to smash into a gate meant to keep my daughter safe. (The irony of getting injured on the safety gate hasn't escaped me. You failed your one task, gate.)

Note to anyone with proprioceptive concerns from your pal Rachel: maybe don't put groceries away late at night, when your already tenuous connection to your body and the outside world has been further taxed by the day's activities, and is essentially non-existent. Maybe abandon heavy cans with sluggish glee. Tuck them away in the corner for the night in their little paper bags, and then fold yourself under the hug of a weighted blanket and dim the lights.

Your toes will thank you.

Wednesday, January 24, 2018

Sensory Mom Turns One

This Saturday, our delicious, sassy, smart, hilarious, spitfire of a baby girl turns ONE - something that I couldn't begin to fathom back when I was pregnant, and something that I have trouble even believing today. And because she's turning one, in many ways, so am I.

Motherhood changes a woman.

Before our girl was born, so much of my life centered around what sensory stimuli I could and could not handle. I talked about it, I wrote about it, I laughed about it, I cried about it. I felt around it and outlined parameters. I measured my abilities for size.

I'm so glad I took the time to really engage with my SPD when I did. What I couldn't see last year that I see now is how much mental space and energy I had for myself pre-parenthood. Well-established parents who are reading this are probably shaking their heads at me. Of course you had mental space and energy, silly girl, you didn't yet have a baby. As the rest of us (and I) now know, parenthood, in many ways, is the true suspension of the self for the enhancement of someone else. How many times this year have I said: it doesn't matter, as long as she is rested/fed/happy? (Answer, for those of you who are not my Handler: MANY.)

Funny thing is it feels natural for me to go: yup, you first. In many ways, as exhausting as it is, it's simpler and nicer to put my sensory issues on the back burner for a bit. This isn't to say that I don't still use my Wilbarger brush or fidgets (I do!) or that I don't have sensory overload followed by a full-on meltdown or shutdown (I do!) - it just means something different to me now. If I can survive pregnancy, a complicated delivery, Newborn Bootcamp (as my friend so eloquently puts it), and a full year of a human's infancy, then I can survive just about anything. Bring on the strobe lights and patter-speak!

Or maybe don't.

This Saturday is not only our daughter's first birthday, it's my first birthday as this modified version of myself. I am still working to remind myself that I am still me: the sensitive poet-writer who loves to bake desserts and lounge in lavender-scented baths and listen to music. I am the girl who was undiagnosed, the teen who longed to know more, the young adult who found answers, and the woman who blogs before you today. I've had to reconnect with these different sides of myself in this first postpartum year, and I am still making tenuous connections with the aspects of my life that came before the toughest and most worthy transition I've ever experienced.

The word I'd use to sum up my first year as a mom with SPD: pride. I'm proud of our baby girl, I'm proud of my Handler and I for learning how to hold on tight and establish a family, and I'm proud of myself for being a wonderful mother. Yes, I'm wired differently. Yes, things can be especially challenging for me. But boy, does it make the reward of every small success even sweeter.

And yes, this small success is truly my biggest.

Monday, October 30, 2017

My Sensory Halloween: A Retrospective

Pretty Princess
Halloween and I have always had both a loving and clandestinely stormy relationship. As a child, unaware of my unique neurology and willing to do pretty much anything for a single Reeses Peanut Butter Cup or Kit Kat bar, I outwardly loved Halloween - beautiful costumes! Sparkles! Crowns! Chocolate! - and I inwardly hated it - roaming from strange apartment to strange apartment and brightly lit hallway to brightly lit hallway in the quest for my beloved candy. I was, after all, an undiagnosed child with Sensory Processing Disorder (SPD).

You'd never have known my displeasure back then, though. I wouldn't have had the words to explain the anticipatory anxiety I experienced every October 30th, or the discomfort and detachment I felt from the fluorescent lighting and echoed stairways, and the fear of who and what was on the other side of the door after we yelled, "Trick or Treat!" (and the noise and movement that their presence would introduce into my already atypical, un-patterned evening).

I never would have admitted that I struggled in any way, shape, or form with Halloween or anything that strayed from the norm of my social group. We were 80s and 90s American kids, and so naturally, we went trick-or-treating. How would I have begun to verbalize why something like this, something deemed fun by my peers, was any sort of an issue for me?

Captivating Cat
Blushing Bride

And yet, Halloween is still one of my favorite holidays.

Much like I wrote about in the post, Here I Am (Say Cheese)when I'm in costume, I can pretend to be anyone feeling anything. 

It's always been that way for me.

As a kid, this meant dressing up and feeling more than myself. While I couldn't stand the feel of lipstick on my lips or eyeliner on my face (something else I would have never, ever admitted for fear of ruining my costume and my sugar prospects), I knew both helped to transform me into that extra special version of me - one that was less sensitive and had no questions or unexplainable quirks - and instead was bold and shiny, all while being just another kid in the crowd. I wanted people to look and comment: what a pretty kitty! What a beautiful bride! - because that's all that they'd see about me and that's all they'd need to know. How simple to merely be that one, uncomplicated thing. How nice to take a short detour from certain aspects of myself.

As an adult, I still insist on dressing up for Halloween.

Exhibits A, B, and C:

Kate from the t.v. show Lost

Janice the Muppet from Dr. Teeth and the Electric Mayhem

Baby's First Halloween Costume

. . . and honestly as frequently as society allows (ANY excuse to wear a tiara is legitimate, IMHO). I think it harkens back to that same feeling of pressing pause. A butterfly isn't complex. A butterfly doesn't have sensory issues or anxiety disorders. It doesn't lose its connection with the world when its brain decides it's overwhelmed and needs to pause. It is the unfurl from a chrysalis and gossamer wings. It's the freedom to be temporarily free of unusual intricacies. 

Beautiful Butterfly
This year, my Handler and I will be dressing up to match our daughter, and the two of us will take her trick-or-treating for the first time. It's fair to say I've never been more excited for a Halloween. At 9-months-old, our little girl won't remember this day - how her costume got lost in the mail, how her dad and I had to scramble and get very creative to recreate it - but she'll relive the day sometime in the future through photos. I can't say for sure who she'll be then and what her relationship will be to either Halloween or the sensory world. I don't know much for certain yet. When it comes to babies, every day is an adventure with a brand-new roadmap.

I do know one thing, It's something I whisper to her as she sips away at her bottle, fighting to stay awake; something that I hope she stows away somewhere in her rapidly developing mind. She'll have the sense that she, too, can be anyone feeling anything in this lifetime, whether or not she happens to be wearing a costume. 

Monday, August 7, 2017

To the Pharmacist from the Woman with SPD

What you saw:

Under-slept, over-worked new mom of 6-month-old came to the drugstore to pick up her prescription and forgot her ID, and then strangely and awkwardly cried when you said she couldn't buy her medicine without that piece of identification, before gathering her other bags and heading back out into the haze of August.

What you didn't see:

Adult with Sensory Processing Disorder woke up for the fifth day in a row thinking - do I feel able enough today to make it to and through the drugstore to pick up my medication this morning? Did I sleep well enough last night to help soften the blare of traffic noises and intense fluorescent lighting required to make this trip a success? Can I manage the transition both in and out of the store and through the steps of the transaction without losing my tenuous grasp on the world around me today? 

The debate that lasted through breakfast, caring for infant daughter, sending husband off to first day at new office, starting own work. Do I feel able enough?

The question of need vs. ability: I need the prescription, can I handle the actions necessary to meet the need? What happens if I don't have it? 

The feelings of shame and guilt, of having to pawn an errand off on someone else, albeit a loving and well-meaning someone else who gets the intricacies of living with SPD. The feeling of sudden empowerment, of I can do this silly little thing! Of wanting to rock and own the very thing others take for granted.

The wishing it was fall so I could locate the ends of my body again. The wishing I was neurotypical so I could just run the damn errand like a sane, logical adult who needs something done.

The sense that logic has nothing to do with differences in neurology.

And then: the decision made somewhere between the second and third floors as the elevator descended. I can do this today, I am able enough. The bold, short walk through the thick air that feels ready to burst into rain. The sliding doors and the densely packed aisles. The syrupy music and sharp lighting.

The Pharmacist. The request. The missing ID. The tears of but look how much I went through just to get here, just to pick up this little thing like a capable adult. The tears of but how will I do this all over again if I went to fetch my ID? How will I tell my handler, yet again, that I need his assistance? 

The sense that he'd never understand, even if I explained it in great detail.

The shame. The guilt. The exit from the pharmacy and back out into the summer air, restless.

Thursday, July 13, 2017

A Sneak Peek Into My Sensory Meltdown/Shutdown

In an ongoing effort to destigmatize sensory meltdowns and shutdowns, and humanize SPD in general, here I am last night in the middle of what I can only call a mix of both a meltdown and a shutdown. I'd "Hit the Deck," as I like to call my need of laying supine pressed against the floor, and I went back and forth between angry-tears and staring into space. I thought of you all in this moment, how the members of the sensory community all do this when we've been pushed too far, when we're taxed and burnt out and overwhelmed by endless input and processing, and I took a single photo.

I almost didn't post any of this. I looked at this picture today and immediately felt ashamed of my behavior and my need to lose composure, and embarrassed by my differences in neurology. That's when I decided it needed to go up. It's why I'm here. It's why I do what I do.

To the person mid-meltdown or mid-shutdown, tight-lipped with the glassy eyes, I see you. You are a wonderful, worthy person. This moment doesn't define you. Hit the deck, cry, scream, stare. Breathe. Reconnect. Think of those who love you and who you love. This moment will pass, as all moments do. Mine did. The next moment and the one after that are new, brighter. They belong to you.*

*Originally posted on Coming to My Senses on June 30

Tuesday, June 13, 2017

Sensory Snapshot

Photos aren't always as simple as they seem.
Found this picture on Facebook's On This Day feature, snapped by my Handler on June 12, 2010. It looks like a pretty composition of flowers with me, hazy, moving down the street on the left. What you can't see, and what I remember about this moment, is we had to walk a good 15 city blocks back to our apartment, and I was in full-blown #sensory overload - even on this seemingly calm and beautiful street. The day was especially warm and white and overwhelmingly bright, and we'd just come from a few hours of visiting our friends' new baby. I was burnt out from the engagement and uncomfortable in my skin and in my clothes and I just wanted to be back in our safe space with the AC on. I think I walked strides ahead of my Handler (again, back before I knew how powerful and helpful holding his squeezing hand could be) the entire way, frantically chasing down our final destination in my attempt to stave off a shutdown and seek safety.
It's this sort of subtle way that #SPD hides in plain sight: the woman speeding down the street attempting to escape from her own neurology, desperate to touch some sort of base like in her childhood games of tag - the bushes and stoops that surround her, a jumbled blur that her brain can't quite piece together; the painful sound of sirens and cars whirring by. Many feet behind her, the man snapping pictures of what he deems beautiful.
And aren't we?

*Originally posted on Coming to My Senses on Facebook on 6/12/17

Thursday, April 20, 2017

The Sweetest Tool in My Sensory Arsenal

You guys.

Why did no one ever tell me that babies make for the best sensory tools?!

Yes, I know my 12-week-old daughter isn't a sensory tool . . . per se. She's a human being with an infectious smile and the most delicious coos and she loves me, possibly more than anyone's ever loved me before (we're in this phase where I walk into a room, she either hears or sees me, and her face erupts into wide grin after wide grin) - but in the midst of her tearful cries and the raise of her tiny arms, when I hoist her small frame onto my torso for a cuddle, she becomes - for a few moments at least, until she wiggles away like a tiger cub - the best sensory tool I have in my arsenal. Who needs a weighted lap blanket when there's 10ish lbs. of sweet-smelling, tactile-pleasing-fuzzy-headed mini-me right under my chin pressing deeply against my chest?

Throw in the Baby Bjorn, my beloved and trusted baby-wearing carrier, and I'm a happy SPD adult these days. For me, nothing feels more prioprioceptively grounding than trekking my infant around, strapped to my body.

Birds-Eye Bjorn View of Bow-Hatted Babygirl

Delayed diagnosis sensory adults who are also parents of infants, may we relish our children for their intelligence, energy, and beauty - but also for their natural way of supporting our sensory needs.

Except for the screaming. I'm pretty sure we could all do without the screaming.

Monday, February 20, 2017

On the Newborn Life. Sleepless Nights, and Flexibility

Sensory Friends! I'm officially a mom.

On January 27, 2017, without much warning or enough preparation, I gave birth to our tiny, sweet, and headstrong baby girl. She wasn't due for another three weeks at least, but on day four of a ceaseless headache, I was diagnosed with preeclampsia, a condition related to elevated blood pressure and swelling that, when gone unchecked, used to kill women only a century before. The cure for this headache, said my doctor, was delivery. Talk about a strange remedy.

Walking from the doctor's office to the hospital, me in tears while calling family and wishing we'd found time to complete our birthing course, the Handler in best form scooting me and our almost-baby around the world, something my mom had begun saying lately started really resonating with me: be as flexible as you can. And as someone with Sensory Processing Disorder (SPD), I am rarely - if ever - flexible with surprises that come my way. Unexpected happenings come with a deep degree of unpredictable sensory information - strange locations, sensations, experiences. They're especially frightening and taxing. But on January 26, I was in no position to have a choice. It wasn't a case of well thanks, Doc, I'll take your suggestions into consideration. Let me sleep on it! Let me finish packing my hospital bag and schedule time off from work and really deal with the fact that our lives are about to change in unspeakable ways. There's no "let me cope first" time once a medical diagnosis has been cast.

I'll sum up the 23 hours of induction and treatment and labor (and the 72 hours that followed) as a hazy, medicated mess. I was on some crazy and necessary substances to keep me and the baby safe from symptoms like seizures, and they have turned my memory of the day and the days that followed into a weird, haunting haze. Looking back, I feel like someone who experienced some sort of trauma. In the first week, I'd startle awake at night with a foggy, scary half-memory that I'd clarify with the Handler in the morning. Did that really happen? I'd implore, trying to connect fragments of experiences to piece together a story. In the hospital, the doctors and nurses commented on how well I did, how nice I was, how flexible and calm I remained through delivery and long after. This is not a memory I have, it's one that's been reinstated for me by my husband and parents, who did most of the communicating for me once the medicines had kicked in and I was MIA. Although I have to say, I very clearly remember delivering our daughter: how powerful and capable I felt with each push.

But enough about that. I love that human beings have the capacity for forgetting the explicit details of pain, and with each day, whatever minutiae I registered fades further. Our daughter is a gorgeous mix of our features, and when she's not struggling and crying with what we think could be colic (and what I suspect may be some early sensitivities - only time will tell), she squeaks and coos and makes adorable kissy sounds. At two days old, she was already holding her head up on her own, and at just over three weeks, her legs are so strong that she finds a way to stand up in our laps - as small as a table lamp and already seemingly ready to walk away and lead her own, independent life. And though she be but little, she is fierce. 

The challenge for me now is the chronic exhaustion and limited sleep, which would've wreaked havoc on my sensory life long before our baby girl arrived, and now just has me living in a daze with my postpartum body attempting to make sense of proprioceptive input (or lack thereof). I suppose it doesn't help that I dropped my full pregnancy weight gain of 25 lbs in 11 days thanks to my medical condition, although it sure is nice to wear my old clothes. While out on maternity and paternity leaves, the Handler and I have been sleeping in six hour shifts, giving the other a chance to be baby-free and really rest, although six hours seems like it'll never progress to seven or even eight, and 5am on a Sunday is really the loneliest time all week (take it from one who knows).

Funny, I'm now looking forward to change. I can't wait for this little girl to sleep later into the night, to grow so we can keep her ever-hungry belly fuller longer. I know with these anticipated changes, there will be new challenges, new reasons to be as flexible and bold as I can as we face the unknown together.