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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.

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


7 comments:

  1. Thank you so much for writing this. My son has autism, and is aversive to foods and oral sensory stuff. I try hard to understand why he will ONLY eat dry crunchy things (literally certain crackers &, cereal. And he limits drinks to Milk & Juice). He does have food allergies as well (Eggs, nuts, peanuts). Reading what you are able to communicate is tremendously helpful for me in understanding my son and what life is like for him. Thank you!

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    1. So happy to hear that, Merri! It's absolutely a sensory thing.

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  2. I'm glad you have figured out how to make eating better for you. I also hope all of your GI issues are subsiding.

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  3. OH wow...I could have written this word for word. So strange. Except I did not get poisoning...I get weird attacks on my upper left side and am on a gluten and dairy free limited diet and I STILL get them sometimes...so lots of yucky tests...My gastroscopy is scheduled for september...to me it is TORTURE...medical tests are TORTURE...I only endure. I have to fight every ounce of pain, panic and feelings of being abused even when I am not because my system feels abused. I get very traumatized. I did HIDAscan yesterday and while it was the best test I have ever done the warmth of radioactive stuff going into my arm too considerable amount of control to ignore...and the nuseau half way through the test almost had me jumping from the table but I didn't. I think we are very brave...and inconclusive results are the most depressing as we go through ALL of that torture for ZERO answers...it feels like something senseless.. I try not to cry or think about it when I can but since we have to eat 3 times a day it is always in the back of my mind...

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    1. Kmarie, wow, sounds like you've been there too! Must stay brave and patient, for sure.

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  4. Wow, my three sons have had similar issues with texture. They used to only eat a few foods: most of them crunched like a potato chip and not like a carrot. Now they eat all sorts of foods, but we have undergone lots of OT therapy, trying to desensitize them. Compared to most, they're still quite picky. I know it's an aversion to something new -- and sensory issues. Thanks for sharing!

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