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Wednesday, April 29, 2015

Sensory Issues: Differences, Disorder, or Disability?

This post will probably not make me popular or win me any admirers, and that's OK. I'm learning that sometimes it's the job of an advocate to rally the troops and infuse the world with endless motivation and positivity, and sometimes my role is to force people to take sides, or at least consider different angles of an issue through my writing. 

Let's talk about the three big Ds that people use when describing their sensory processing issues:

Differences
Disorder
Disability


Picture a scenario: I'm sitting with a group of friends at the table of a busy restaurant one evening. It's clear that I'm somewhat distracted already - the waiter and busboys are perpetually flanking us on all sides, all too quick to snatch our plates away or refill our glasses. At the table next to us, a set of parents try to corral their toddlers as they scream, drop sticky bowls of sherbet, and leap from their seats to explore. The lights, bright and intrusive, glow overhead. And then, without any prior notice, a live musical act begins setting up in the corner and testing their instruments. This simple act puts me over my tolerance threshold, and suddenly I am in shutdown mode, dissociated and uncomfortable, swathed in the physical reaction to too much sensory stimuli - unable to see or hear properly. My head aches and under my skin, the march and burn of - what, blood? Errant fire ants that somehow found a doorway into my system? and the feeling of being no one and nowhere - unable to see, hear, interact, maintain composure, or surface from this state of being - means I need to find a quiet, safe place stat. I rise from the table, I jet towards the front door. Get me home.

I am a woman with sensory DIFFERENCES - welcome to the first D! There is not a single doubt in my mind that I have sensory differences. I am different when it comes to how I perceive the sensory world around me. This makes sense. According to the latest scientific findings, my brain is wired differently. I don't process sensory information the same way as most people because I have structural, neurological differences. It's not unlike someone with Epilepsy or Multiple Sclerosis - something is not the same in the wiring of my brain. And that's totally cool. When I show up to that dinner in the scenario, I am arriving to the party with sensory differences. Of the eight friends, another one of us may also have sensory differences. People make mention of a sensory spectrum which, like human sexuality, represents all possible variations of the human experience, and I am 100% on board with this logic. After all, we know better these days than to say one experience is "normal" and another is not, yet even by using the word "differences," we recognize that we are comparing ourselves to a larger, unique group, and we don't entirely fit in the same parameters. But even still, if my brain is wired differently, then I do have differences. I fall somewhere along the spectrum of engagement with the sensory world, as do every single one of us on this planet. 

The DIFFERENCE - there we are again - is that it doesn't just end there for me. I don't go - gee, I process things in another way than person X - and go about my daily day. My sensory issues impact most moments in my day. They impact my life choices, my decisions - both in the moment and in the goal-setting-future. They impact the people with which I spend time, the brands I select, the type of employment that I choose. In short, my sensory issues impact my entire life. Sometimes I fantasize about the person I'd be without sensory issues. What would I like? Would I bungee jump? Go on safari? Walk the Appalachian Trail? Would I surround myself only with chihuahuas? Volunteer for Greenpeace? Start a band? I can't know because my sensory issues are such that they're an inherent part of who I am and how I experience the world. I'm a woman with brown hair and green eyes. I'm a woman with sensory issues. 

I am a woman with a sensory DISORDER - hey, hey D#2. I'm sure I'll lose some of you right here, and that's fine. What makes what I have a disorder? The term "differences" doesn't cover enough of what I contend with on a daily basis. A disorder considers patterns of behavior and thinking that influence our experiences of the world. I most certainly have a pattern, as do most adults that I know with sensory issues. We react to certain stimuli the same way every single time. Our thoughts, especially for those of us who grew up without a diagnosis, often turn to similar, self-defeating statements in the presence of our reaction to sensory stimuli. Besides this, having my sensory issues makes functioning in the sphere typically inhabited by others complicated. I cannot behave the same way as most, and so I am perpetually struggling to function in an atmosphere that isn't designed for someone like me. In the dinner scenario, I have a DISORDER when I struggle to interact easily with the environment - as I always do. I have a DISORDER when the lights bother me. I have a DISORDER when the sounds set me on edge. Inside, I am thinking "it's ok, you are a trooper, you can do this!" or "dammit, woman, you've failed yet again to maintain your composure in public." These are the words I've always said to myself, the reactions I've always encountered to the information that my brain and body just cannot process. This is my pattern.

I am a woman with a DISABILITY when I can no longer function in a given situation because of my inability to process. When I am forced to leave the restaurant because I can no longer interpret the barrage of sensory information, it is crippling. From within the weird, imprisoned bounds of a shutdown, peering out at the world, detached from my body, unable to hear or see or feel where my fingertips end and the outside begins, I am DISABLED. Toss out your pretty spectrums and hug-a-tree mentality. It's not about being marginalized or belittled or whatever political word you choose to use. In that moment, I am DISABLED because I cannot take care of myself. I cannot take care of others. I cannot handle the responsibilities of adulthood because I cannot see or hear or feel where I am. I am DISABLED because for that moment in time, I am literally negated by my own wiring.

(Side note: My friend/little sensory sister/illustrator of my upcoming sensory guidebook recently wrote a brilliant post on how she is her disability. I am beyond proud of her for making this claim and taking ownership of this particular D-word. It's a must-read!)

For me, saying "oh, it's only a sensory difference" is often too dismissive (more Ds). It's dismissive of the fact that I struggle on a regular basis - and that my struggle is nasty, meaty, and real. It's dismissive of the fact that when I lose my faculties, it is a scary, surreal, hopeless experience. It's dismissive of the fact that I have struggled my entire life in the face of this unnamed, unrecognized, unfortunate bully of a condition that's powerfully shaped who I am and how I engage with the world. 

I am okay with each D-word used, as long as they're used fluidly between the three. To me, they represent different - but valuable - aspects of my sensory life. The flexibility of terminology allows me to dial up or dial down my message to reach others. Sometimes it's important for me to say that I have a "neurological disability," because in the moment, I am actually disabled and need someone to be my eyes and guide me home. Sometimes I like saying that it's a "disorder" to convey the life-long complexity of my sensory issues and their patterns - this isn't just a one-time-thing, this is a life-long thing. Sometimes I prefer "differences," especially when I am trying to reinforce the idea that I am dealing with a uniquely challenging system, and therefore a uniquely challenging approach to the world. 

Like this post or don't, I respect that we all have our own sensitivities to these terms and preferences within them. In my personal book of life, none of them take away the humanness of a person with sensory issues - they only allow for a broader dip into the pool of human experience; they give those of us who are suffering permission to be who we need to be, the full gamut. Differences, disabilities, disorders - just three darling words to help me describe my experience of the world.


Thursday, April 23, 2015

Proprioception, I Love You (Sometimes)

I am in love. Sorta.

Woo-hoo

It's a temperamental thing, really, this love. There are no daffodils or bonbons, no kisses. I don't smear red paint around my lips in anticipation of his arrival. We have our awkward moments. There are days that I feel cursed and days that I feel especially lucky to be this person in this body on this planet swirling around the sun. But when I am in love, I am head-over-heels in love. A laughing-madly-at-passers-by sort of love. An every-song-reminds-me-of-our-love kind of love.

Today, I am in love with proprioception, the sense of where my body is in space. Because in case you haven't figured it out by now, I am a Sensory Processing Disorder advocate and author, and I will literally never ever blog about another topic.

*Grins*

Proprioception is a double-edged sword and one of my greatest sensory challenges. I'm not lying when I say I rarely know where my body ends and the world begins (the proof is in the bruises I sport all over my limbs like a decorated war hero). Feeling untethered to any physical reality, my body frequently bobs and weaves above itself like a kite lost along the shore, even as I am sitting still and looking (semi) calm. Certain things help me almost connect: a weighted lap pad. A husband/handler willing to sit on me and not make any judgments. A laptop used on the actual lap. It's the sense with which I am always craving to connect and often cannot find. It's like a Missed Connection for the senses. It exists, I've seen it before, and I dream of seeing it again. Life without it is meaningless. And then without any warning, my stars align and I am suddenly physically grounded for a juicy, sugary, delicious moment.

Take today:

In the middle of a very humid, very warm, very hazy, very rainy, very blindingly cloudy and supremely white NYC spring (the epitome of uncomfortable and gross, IMHO), today emerged from the night with a bright azure blue sky and unseasonably crisp temperatures. The wind howled through our open windows. I peered out and down to the street, and watched people scurry past our door clad in coats. It used to be that each morning, I jumped into my Lululemons and scooted out to the gym without a second thought, eager to immerse myself - even if briefly and safely - in the world outside. Since my bold move away from medication and into sensory shutdown territory, it's been harder to engage with the noisy, bright, crowded, busy sphere outside of our apartment. Seeing and processing sight has been touch-and-go, making a walk outdoors nightmarish. Who doesn't love walking down the street when their brain can't properly interpret what it's seeing? I mean, really. I've had to lure myself outside with padded accolades and using my most gentle motherese (It's okay, beautiful, you can do this, I swear! Coo coo, my little shmoo! You should win an award for the triumph of the human spirit over the human brain! Look at you walk down the street like a boss!) and all of this for a five minute walk around the block - something most people don't think twice about. Oh SPD, you creature. So today, almost four weeks after officially going off those nasty benzos and after 27 days of feeling like a sensory stranger trapped in a wacky neurological jail, I cautiously stuck my face out from behind our building door. A rush of cold met my cheeks. MY CHEEKS! I had almost forgotten where my cheeks were, or that I even had cheeks. Cheeks mean that I have a body. Feeling my body means that I know where I am in space. I exist!

Cheeky!

In my love affair with proprioception, cold air is the catalyst. Maybe it's a love affair with proprioception by way of a pleasant tactile experience. I have always loved the feel of cold against my skin. Hungry for soft, chilly fidget opportunities, I still run my fingertips along anything that may fit the bill. In the late 80s and early 90s, this meant I adored any mature woman who ventured outside in winter in a fur coat. Now, my chenille weighted blanket is this tactile seeker's delight in December. I stroke the fabric as if it's the downy hair of a beloved child.

I suppose that this makes sense. If skin is our largest (sense) organ, and I seek tactile input, the act of having cool air blow against my skin will be especially soothing for me, allowing me to feel calmer and more connected to my body in space, or the following RachQuation©:

 Relief, AKA Proprioception

Equals
Cool Air

Plus
Touch

This Theory of Rachitivity© is so supremely simple to construct, and yet so difficult to arrange with Mother Nature. It is why I feel as if I come alive in the fall after floundering against the excruciating moist heat of summer. I have vivid daydreams of moving somewhere in the world where it is always autumn - crisp, blue, sunny - a day not unlike today. (I should note that thanks to the weather, I made it further on my walk with less tools than I have in the past month. With my proprioceptive sense feeling more present, I was able to rely less on my iffy visual processing for guidance outdoors - it's amazing how the senses work together when they are indeed [finally and suddenly, even if temporarily] working!)

So yes, today I am a swooning sensory teenager wearing my heart on my sleeve. I am a young bride on her wedding night. I am eternally grateful to the forces of the universe, the local weatherman, and your favorite weather god for allowing me to feel the presence of my body for a few brief minutes in an otherwise endless stretch of questionable time. After my short-term shift in ability these past few weeks, it's nice to think that I may actually feel like my best self again one of these days. Love is, in fact, a random cold blue day in spring. It's feeling your body moving through the air in a world that isn't always hospitable to your neurology.

It's regaining the thing you thought you'd lost for good, if even for a few moments.




































Friday, April 10, 2015

SENSORY FOCUS MAGAZINE: Reflections on the Sensory Self


My latest Sensory Focus Magazine article is here! This article has an old, never-shared blog post in the middle. Take a read and learn how perceptions change in the years post SPD diagnosis.





Sunday, April 5, 2015

Words From Inside a Sensory Shutdown



Think of this as the equivalent of finding a message in a bottle from a solitary shipwrecked sailor. I am writing to you from the inside of a sensory shutdown. I can barely see the words I am typing against the dimly lit screen or feel my fingers against the keys, but I am writing nonetheless.  One second, I was walking outdoors, respectful of my recent benzo-withdrawal-heightened sensitivities, the next I was cross-legged on the floor of my bedroom cleaning out my closet, and then I was devoid of my faculties. What was just a pile of old boots and bags became haphazard stacks of lines and textures. Reaching for an item from the heap made my palms sweat and my skin pulse with electricity, even as I was safe and in a familiar place. The light that poured in through the slats of the blinds became blinding. The sounds of my favorite acoustic/indie/folk bands became muffled, incoherent, somehow louder. I thrust my darkest pair of tinted blue glasses onto my face and stood, wobbling in front of the mess. The jumble of input made me feel anxious. I took to deep breathing, aware that this anxiety wasn't psychologically-based. I was not feeling emotional about spring cleaning my closet. I was not nervous to be sitting in the bedroom that my husband/handler and I have so lovingly decorated with deep, rich shades of chocolate brown, sand, and blue to match my favorite photograph of our favorite beach. The anxiety was there just the same, holding hands with that moment in time when my eyes went from processing to not processing, when my ears went from hearing to not hearing.

A sensory shutdown is the loneliest experience for me. Perhaps it's the loneliest moment for someone with sensory issues - actively present in the physical body, almost too present in the face of sensory input, and yet trapped inside this fortress of bone and sinew. It is an experience for a party of one only. I can share the play-by-play with someone present with me at the time, but no one else can join me in this inner sanctum, the raw feelings of confusion and detachment - of failing the most basic of tasks. If I can't use my senses, my only portals to the world outside of myself, then I am without a door, crouched inward, banging on the walls. Behind my failing eyes, hyperactive ears, and jerky, uncoordinated body movements, my brain is working just fine - the part that isn't differently wired, that is. I am able to put together these thoughts to write to you. I know who I am, what I stand for, who I love, and how I logically connect to the environment outside of the self. I can theorize, philosophize, find humor in absurdity. It is nearly impossible to read or write (nearly!) I took a shower by the very grace of the universe, trusting that what I thought was the shampoo was actually the shampoo, battling against my inability to understand where my body was in space to not trip over the lip of the tub. I'm unable to do the most basic things that human beings do, yet able to think abstractly - that is, when I am not distracted by how bright, loud, and shaky this apartment feels in this moment.

It is nearly impossible in a moment of shutdown to be a valuable, contributing member of the human race. It is hard to talk, uncomfortable to listen, impossible to process. Through the muck of my sensory portals, I know enough now to look for my tools, to develop new ones to support how I am feeling in this moment. Needing to hand-shred parmesan cheese for a dinner recipe and simultaneously too uncomfortable to stand in our sizable, open kitchen, my back to the room, I rigged a series of pans and bowls to allow me to grate cheese from the safety of our couch. I am sitting in near-darkness on what is the most gloriously blue spring day, because it means that I can process the most bare minimum of actions to survive, like preparing lunch, and even more basic actions, like washing my hands.

We must find a way to respect the person in sensory shutdown. It is the most private of battles, neatly tucked away in the depths of our neurology. It may not bleed like a gash, but it is no less painful. It may not smart like a break, but it is renders us no less incapable. It may seem like a person in shutdown is just being selfish, strange, sensitive, or unusual - unable and unwilling to participate, to engage, to immerse themselves fully in that moment in time. In reality, we are temporary prisoners rendered blind, deaf, and mute by a world beyond our control - and sometimes even beyond our abilities. As impermanent as these episodes are, we cannot gauge when we'll find ourselves detached, scared, immobile, and in the throes of such a personal skirmish again. How heavy is the head that wears the sensory crown.


Thursday, April 2, 2015

First Episode of The Inside View on SPD is LIVE!


I'm happy to present the first episode of The Inside View on Sensory Processing Disorder, a question and answer video series by me in partnership with my friends at the SPD Foundation. The first video is about going to the dentist while dealing with sensory processing issues. 

Click on the video below or click here to hear more on the inside view on going to the dentist.  You can also find the video on the SPD Foundation's website on their Adults page.

Amazing pause-face if I do say so myself . . . :)