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Monday, June 23, 2014

And Now a Word From My Handler

I think we're about to make adult SPD blogging history here. I am proud to present to you a guest post by my husband Josh about living and loving someone with SPD (that'd be me). SPD partners are not alone in their efforts to understand the complexities of the condition as much as SPDers are not alone in their own sensory struggles and triumphs. By sharing our stories, we remind ourselves that what may feel like isolated and unusual experiences are quite common for many.

What's it like to be married to a person with SPD? Step into Josh's funny, wacky world and take a peek.

On behalf of all adult SPDers, thanks to the husbands, wives, boyfriends, girlfriends, and true loves in between that make our adulthoods that much easier.
-Rachel


Greetings, Coming to My Senses readers!

I have commandeered this blog, and if nobody moves, nobody gets hurt! I don’t want any funny business! Are you ready? Good.

My name is Josh Erich, and as you may or may not know, I am married to the lovely Rachel Schneider, one of the up-and-coming names in the world of SPD, amassing an army of followers set to destroy all strobing lights and loud noises and icky feeling things from existence. Some of these people have gone so far as to ask Rachel about me and what it’s like for me to be married to a person with SPD.

Why me, you ask? Well I ask that too . . . why me? After all, I’m just a funny, creative guy married to a smart, beautiful lady who also happens to have SPD. She’s more than her diagnosis. She’s a therapist. She’s a poet. She’s a baker. She’s a pointer-outer of my irrational concerns. She’s a speaker of truths. She’s a comedienne in her own right. She’s the missing Lindbergh baby. She’s who shot J.R. She’s an ELK, a Mason, and a Stone Cutter. She puts up with me making up some stuff about her in blog posts.

We all have something, don’t we? Being a partner to someone who has SPD is like being with a partner who has anything else, except instead of a blood glucose monitoring kit or Zoloft, there are sensory brushes and trampolines and a seventeen pound blanket that I lug around on vacations on Rachel’s behalf. (Editor’s note – thank you for saving my back!)

Rachel calls me her “handler” because I’ve learned how to “handle her.” Get it? Well I thought it was funny. I am her handler because I am the human tool at her disposal. I monitor the environment. I keep the remote close at hand. I make sure things stay as light and easy for her as possible. I wasn’t born this way (as Lady Gaga would have you believe), but rather I was introduced to this disorder at the same time as Rachel. We were only 6 months into our relationship when she was diagnosed with SPD, and at that point I was pretty sure it could be cured, like the flu or scrofungulus (Harry Potter, anyone? No?) Obviously that wasn’t the case, but that didn’t mean I was going to give up on the lady I fell in love with on our first date.

Since Rachel’s diagnosis in 2010, I’ve picked up a few tricks. Most of these came to me over time. I tried them out of necessity and they worked. There was that night back in 2011 when we were laying in bed before sleep and Rachel was clearly not slowing down. She was just going on and on about her day and her week, and at that rate she’d never have gotten to sleep. I instinctively placed my hand heavily across her eyes and lower brow. She instantly went into a state of complete relaxation. She fell against her pillow. Her entire body went slack, and she immediately stopped talking. Eventually I took my hand off of her face and we looked at each other, both sort of stunned by what had happened. This discovery lead to Rachel finding and buying a soft, heavily weighted sleep mask which she now wears every night. In time, I figured out that if I even just pushed a particular spot in the middle of her forehead, the same reaction would intensify - it seemed to be a pressure point. I call this spot on her face “the off button.” Sometimes I will do it just for laughs because for some reason I find it amusing when my wife turns into a dropped marionette, but it instantly calms her down. I also learned that, when faced with my wife having an allergic reaction causing her sensory system to freak out, sprawling out across her body, like a human weighted blanket, was the best answer. I even picked out the blue holiday lights that we strung across the living room to create calming evening lighting.

Here are some more things that I have learned:

1. You will get bitten. Make sure you are constantly aware of where your SPDer’s mouth is in relationship to things you don’t want bitten - because trust me, you will get bitten if your SPDer isn’t getting enough input. You can help by applying deep pressure to their body, offering up some crunchy snacks, massaging around their mouth, or just locking yourself in the bathroom with rosary beads and praying that the wolfman doesn’t get you too.

2. It doesn’t matter how good your omelets are, they won’t get eaten. I make amazing omelets and other breakfast foods. Breakfast is not Rachel’s favorite meal because of the types of textures that breakfast foods offer. She doesn’t like the texture of cooked eggs, nor does she like the gooeyness of underdone (or as I call it, perfectly cooked) french toast - she says the first squeaks against her teeth and the second just grosses her out. This doesn’t mean that we can’t have special breakfasts together on the weekend, I just have to make some things the way that I want and others the way that she wants. We also share the stove and make our own breakfasts together. Of course, she does fantasize about my secret pancake recipe . . . :) (Editor’s note: fact! Now let’s see if he can make me a gluten-free version *throws down the gauntlet*) (Writer’s note to the editor: Challenge accepted.)

3. The nighttime isn’t always the right time. Sure, I might really enjoy watching Law & Order SVU before bed. Or perhaps a marathon of Orange is the New Black, or even back-to-back episodes of Elementary and The Following. That doesn’t mean Rachel wants to, or that it would even be a good idea for her. She needs to wind down with “comfort shows” that won’t make her too crazy/upset/work her brain too vigorously. These are always half hour comedies, and lately the rotation has been New Girl, Parks & Recreation, and Raising Hope (RIP). These are shows we both love and enjoy, and because they are familiar enough, they are easier for her to process at night. This also goes for most evening events. By the end of the day, SPDers’ processing reserves are spent, and it’s rarely a good time for a crazy date that ends on the roof of a building in a standoff between the feds and some drug traffickers.

4. You are (usually) not the reason behind your SPDer’s sudden mood shift. Unless you’re a knife-wielding clown who shouts epithets at puppies, I’ve learned that most of the time your SPDer’s mood shifts are not about you. (I say “most of the time” because I’m still a guy.) There are days and times when Rachel is so overwhelmed by sensory input that she suddenly gets extra sensitive. She’ll go from happy to edgy and cry easily. It took me a while to learn this, but when she has these bouts, I just notice them and remind myself that it’s rarely about me. It’s ultimately about her being extremely uncomfortable in the face of noise or light or movement or surprise. I’ve learned that the best thing to do in these moments is to give her some quiet space and time (a tardis would be helpful for Dr. Who fans . . . just disable all strobey things first). Ask if there’s anything you can do (usually the answer is an emotional “noooo, you can’ttttt”) and then just give your SPDer some room to breathe, reconnect to their bodies, and integrate whatever sensory input is freaking out their system. Like Rachel, I’m sure your SPDer will eventually calm down too and be able to discuss what’s making them feel so off.

5. They’ll need to hold your hand. I’ve learned to always keep at least one of my hands at the ready in case Rachel has a sudden need for physical input. It’s especially helpful when your paws are ape-like, like mine are, for extra tactile input. See your local geneticist for more information on how to grow your own monkey paws.

6. Rattlesnakes make terrible pets. Just trust me on this one, okay?

So listen, nobody’s perfect.  If you were truly flawless, you would never see the light of day because science would have you locked away in a subterranean lab trying to harness what it is that makes you perfect so that they could market it to the public at $30 a bottle. You are a person, you too have your own issues and concerns, your own likes and dislikes. While they may not be as obvious or complex as the challenges your SPD partner is undergoing on a daily basis, they’re still real. The sooner you can accept who you are and your supportive role in an SPD partnership, the sooner you can truly love your favorite SPDer completely and without hesitation.

It’s ultimately not that complicated. Every partnership takes teamwork. It takes chutzpah, moxy, wit, and encouragement vigorously stirred together with a pinch of salt and baked in the oven for years and years and years at 350 degrees. One thing that helps the both of us is making jokes about Rachel’s SPD when we can. We come up with nicknames (I like calling Rachel “SPeeDy” when she’s being SPD-ey) and I jokingly keep sharp utensils away from her when she’s likely to drop them and maim us both. She scratches my back and I brush hers. I keep an eye on her sensory surroundings, and she makes the bed in the morning. She laughs at all of my jokes and I am her human fidget. It’s all about the give and take. The reward of unconditional love is well worth it.




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Joshua Erich lives in New York City with his wife, Rachel Schneider of Coming to My Senses. He is a freelance graphic designer at Pixelated Parchment (www.pixelatedparchment.com) and performs improv comedy in his free time. He knows all the digits of Pi, as long as you stop listening to him after the first five. He invented the moon, and is pretty sure that under his normal-looking skin, he’s a muppet in disguise.

Tuesday, June 10, 2014

Food for Thought

With the bulk of my sensory sensitivities skirting around sight, touch, sound, and a physical connection to the ground, I rarely think about my gustatory needs. I'm pretty sure most of us take our taste and texture needs for granted - especially the neurotypical folks. In the mood for a spool of warm pasta drenched in lumps of spicy tomatoes? Easy enough to prepare or order. Craving the buttery silk of vanilla frosting? Pop open a can. We're constantly seeking to satisfy our gustatory needs and simultaneously fuel our bodies.

SPDers are particularly impacted by the proprioceptive, oral sensations provided by the act of eating and drinking. It's why some of us are larger in build (those who crave flavor, texture, and proprioceptive input) while some of us are mere wisps of skin and bone (those who avoid flavor, texture, and proprioceptive input). I fall into the former category, perpetually seeking rough, crunchy experiences when I eat. I relish the cut of sharp, crunchy food across the tender skin of my cheeks, and find peace in the smack of my teeth against the same crispness. Without these sensations, my system does not register that I've actually consumed a meal, and I will continuously seek out nourishment, regardless of how much I've already eaten. Easily manageable, I have learned since my SPD diagnosis to turn my world of food into a sensory activity. I will not start eating a meal unless there is a thick, carby crunch on my plate - be it a crispy flatbread cracker, the toothy bottom skin of fresh-baked bread, or a handful of pointy pita chips. Even a single crunchy item will often suffice, especially if I've had a balanced sensory day and my system isn't taxed.

In the past six weeks, I have become a woman estranged from food and especially detached from texture. After surviving a particularly violent bout of food poisoning by way of tainted chilean sea bass, I became the host for a series of gastroenterological symptoms. At my worst, I appeared to be nine months pregnant - swollen-bellied, fiery chested, weak and weary, recoiling from the sight of food and quickly losing weight. I've endured a hazy endoscopy in which, moments before the propofol high, I was enveloped by an intense wave of terror and fear of somehow being negated from the universe. I woke up, what seemed like only a second later, in a blissful state of drug-induced slumber - happy to be a blip on this spinning planet. Weirdest sleep ever. I've chugged five 8-oz glasses of neon-yellow lemony lakewater laced with radioactive tracers in preparation for a CT scan. Hours later, on a moving table, I stifled a few tears as an iodine IV made my skin feel temporarily and unpleasantly warm (hooray for unwelcome sensation?) I've passively given vials upon vials of blood. I've swallowed my own pride and sense of decency and provided stool samples for a latex-gloved band of nurses. I've even put my daily elliptical routine on hold due to a complete lack of energy. For an SPDer, I've been especially brave.

The proposed diagnosis has varied over the weeks from parasites to bacteria to Celiac Disease. The doctors have yet to alight upon an answer. In their efforts to narrow down the field of possibilities, they have slowly limited the food I am allowed to eat. I went from my normal sensory spread to sensory-acceptable plain white foods to a dairy-wheat-and-gluten-free diet consisting of seven food options, only a few of which are sensory-friendly. Two Thursdays ago, in preparation for my umpteenth test, I was allowed only three foods: plain chicken, eggs, and white rice. Ever heard a piece of plain chicken crunch? Right.

Let me pause for a minute here. "Rachel," I hear you saying, "what's the big deal? Isn't food ultimately just consumed as energy to keep us alive? Can't you manage a less-than-desirable diet for a whole 24 hours?"

Yes, dear reader, I can.

I ate my first-ever plain egg breakfast "omelette" in four bites, gagging between sips of water at the rubbery squeak of cooked eggs on my teeth. At eleven AM, feeling achy and drained, I reached for a bowl of plain, steamed white rice. At one, I managed to ingest a single piece of baked chicken while distracting myself from the feel of undefined flesh against my recoiling mouth. GI-saavy and sensory screwed.

Just because I managed this day of eating doesn't mean that I was faring well. The room began to gently wobble from side-to-side, as if my system was seasick, and when I stood, I was forced to grasp the closet piece of furniture so as to remain upright and grounded. My ears were ringing. My sight was sharp and piecemeal. My heart was racing. I burst into waves of tears with zero provocation. I repressed the urge to bite my own fingers. I was hungry in that sick-ache way. My differently-wired brain was confused and truly miserable without a crunch.

I've been here before, I thought, as I pressed my form deeper into the couch cushions. Before my diagnosis and subsequent (and ongoing) treatment, these same symptoms would haunt me on a daily basis. I would cry numerous times in a single work day, unaware that the office's blaring fluorescent lights and ill-placed copy machine were responsible for sending me into tearful sensory fits. My heart would race as I wedged my way through the rush-hour crowds on my hour-long public transportation commute between states. The day I clung to my father in Athens, freshly-sprung from a disorienting plane ride and thrust into a different time zone, it was because my vision had simply stopped working, revealing details and shapes of the city's passers-by but not their full form. Before my diagnosis, I lived like this day every day. 

That night, at 8:30, I was forced to stop any eating and drinking, and I went into a quiet fast until my test the following morning. I commuted into Manhattan from Queens to drink yet another unnatural, medicinal substance. I blew into a machine every twenty minutes for an hour-and-a-half. When the adventure ended and I was back at home, laptop in hand, busy at work, still undiagnosed of any meaningful GI condition, I relished the crunch and simplicity of a single slice of well-toasted gluten-free bread and a fistful of gluten-free pretzels. It's the little things in life, isn't it.

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To learn more about my life with SPD, visit my website and blog at www.rachel-schneider.com