One of the super delightful and charming* elements of Sensory Processing Disorder (SPD) is that it completely rules your life. My mom knew early on that there was something different about me, and she sought all the help that was available in the early-to-mid-80s, which wasn’t much in the blue collar town of Decatur, Illinois. She was a saint in the way she let me be me for the most part. When I was at home, I stripped off my clothes almost invariably, and typically my mom just went with it. This was probably at least somewhat due to the fact that having an elated, butt-naked trashball child was easier to deal with than a screaming, kicking, biting, punching blonde monster. In the summertime? Forget about it. I was a wild-eyed, frizzy-haired nekkid hellion. Even at four years old, I was One with Mother Gaia, frolicking nude in the side yard, playing with dead rodents, avoiding interaction with people, drunk on life. Things haven’t changed much. Some of my very few, faint memories from living in Decatur are of my mom being somewhat exasperated, trying to convince me to keep my clothes on, calmly explaining the merits of participating in civilized society. My sister Yay, ever the people-pleaser, would often point out how she had her clothes on, and she would keep them on, and did anyone want to see how many cartwheels she could do?
My poor sister Nep, almost five years my senior, was often tasked with trying to help me get ready for school. This usually entailed me being a total asshole and her eventually giving up, storming to the bathroom where our mom was curling her hair for work and being all, “Mooooooooooom! She won’t get dreeeeeeesssssssedddddd!” I remember one time when Nep and I were in our usual standoff (Yay was probably waxing the neighbor’s car, after having organized our parents’ closets and mowed the lawns of everyone on our block) wherein Nep was rifling through my drawers, asking if I would wear this or that article of clothing. Pants were a particularly challenging point of contention.
[high pitched squeal of disapproval]
She asked me if maybe I would wear dress pants. At five years old, I had never heard of such a thing, and was intrigued. I inched closer to her, delightfully broken-in Carebears nightgown clinging joyfully to my tiny frame, and nodded, hopeful. Then she showed me what “dress pants” were and I shattered into a thousand pieces and screamed the kind of shriek that can stop traffic and make angels put their hands over their ears. This is burned into my memory, and is still the first image that pops into my head when I think of dress pants as an adult. She was holding up what amounted to a turquoise polyester-blend pair of pants from a leisure suit. I tried them on to oblige her, and partially because I was a little scared of her, but the crease in the front and the elastic waistband and the way they touched the top of my ankles was absolutely the worst thing in the world, worse than war and Charles Manson and The Great Depression and Jerry McConnell’s career after Stand By Me. My sweet sisser probably thought she was onto something because her ten-year-old brain knew that my favorite outfit had an elastic waistband, and she deduced that perhaps this pair of dress pants would be comfortable in light of that. That’s one of the best* parts of SPD: the way it’s not at all straightforward, the way that your frazzled loved ones can never keep up because while this type of elastic is perfect because it hits you just right and is covered in a gentle fabric, that kind is all wrong because it feels like it’s made of the searing ground up bones of all the dictators and serial killers who ever lived… except those pieces of elastic look remarkably similar to the naked eye.
My favorite outfit was my Brush College Cougars kelly green sweat suit that I wore faithfully. Like, every single day if I could. My mom washed that outfit almost every night to accommodate me. I paired this with a fanny pack that I pulled so tightly around my waist that my sister Yay still has an impression of it twenty-five years later. I needed that input, that tightness around me. That’s another aspect of this disorder, the fact that clothes can be simultaneously too tight and too loose, and that you need input on your body. As an adult, I wear a tight-fitting tank-top under every outfit I wear. Not sometimes. Not here and there. Every.Single.One. Even if it’s a hundred degrees outside, this girl is wearing layers. I also wear a belt always, unless I am wearing a skirt with an elastic waistband, which I frequently do. Naturally, I only wear elastic that is correct at being elastic, per my own nebulous and impossible to articulate standards. You’re welcome in advance for ALL OF THIS, Future Husband!
I wish I could say that these issues are limited to touch, that my other senses are fine and that finding the right balance with my hair and clothing makes navigating my life a piece of cake. Instead, I am also a slave to my sense of smell, as well as the light and noise of the environment around me. As long as something is “right”, it’s fine. I can wear certain perfumes, and some air fresheners can be lovely, and sometimes the smell of food cooking is downright delicious. But the dark side of this is very, very dark. Lots of smells mingling together can be overwhelming, and if a smell is “wrong”, it is all I can smell and it can literally ruin me for hours, if not for the rest of the day. This is to an extreme that is difficult to explain unless you have experienced it, or have maybe been subject to a child who has melted into a puddle of tears over something seemingly innocuous like frying bacon. If I have caught a whiff of something “wrong”, it can derail my focus on tasks and can cause attempts at interaction to be harrowing and draining. As I fight to stay focused or carry on conversation, the smell is like a very hairy dude in tighty-whities jumping up and down in front of me, screaming, banging cymbals, moonwalking, singing Bohemian Rhapsody, doing jumping jacks, giving me purple nurples. I swat him off, but there he is, refusing to go away, all while my chest is tightening and I’m fighting off the urge to make up an excuse to leave so that I can cry or nap or both, but not until after I have showered vigorously to remove that godawful smell from my life forever. The “right” smells, though? They are hypnotizing, a form of Valium, a source of incredible calm. Again, though, nothing is straightforward and without creating a litany so comprehensive it could wallpaper the White House, there is no clear way to articulate what’s right and what isn’t.
Light is similar to smell in that it is debilitating if it’s too much, if it’s too bright, or if it’s “wrong”. But the right lighting can be and often is one of the most soothing salves of my existence. My apartment is littered with string lights strewn about, and other sources of soft lighting. There are lamps everywhere of varying degrees. Overhead lights are only for cooking and cleaning and finding ratties who have disappeared and refuse to go back to their cage. I believe humans were never meant to be subject to fluorescent lighting, as it is unnatural and volatile.
Sound is similar but different. While I hone in on one smell because it is so wretched and threatens my peaceful existence, I usually hone in on sound in an effort to escape the chaos of the world. I love rhythmic live music only when it is really, really loud so that I can drown myself in the rhythm of the song, pushing out crowd noise and whatever else. Ambient sound and white noise are forms of sensory input that are like manna for me. Three hundred and sixty five days a year there is a fan running in my space. That fan is never situated in a way that it can blow directly on me, obviously. That would be ridiculous, all the hairs blowing around and touching me, and the feeling of moving air on my skin. I almost threw up just now as I typed that, just thinking about it. But I need the noise, I need to come on feel the noise because it drowns out the capricious and unpredictable sounds of the world outside. There are few things more violating to the existence of an SPDer than erratic noise. Every time some irregular sound penetrates our existence it’s like fingernails on a chalkboard, like the worst sunburn you have ever had, like every single nerve ending in your body is standing straight up, wailing and gnashing its teeth.
I am introverted in some ways, but more than that, I so desperately need to recover from the sensory overload of the world outside the safe haven of my home that I have no choice but to hibernate at times. You might be the parent of a child who struggles with this, or maybe you struggle with it yourself, and maybe you think I am not coping well at all, that I need additional help. You might be like this bitch is crazy. Maybe you’re afraid your kid is going to end up being a prisoner to the sights and sounds and smells of life, and maybe you’re working with lots of therapists to try and avoid that. But I think that holding a job and having a reasonably healthy social life and being able to take myself to the grocery store and pay my bills and clean my house and raise pets… I think all those things are indicative of being a healthy human, regardless of these issues. Learning to deal with these issues isn’t about eradicating them entirely, but is instead about learning how to integrate them into your existence. So I sleep with earplugs in my ears and I sometimes have people lay on top of me for sensory input. As long as those earplugs aren’t made out of crack rocks and those people aren’t prostitutes, what’s the big deal?
*When I say “good”, I mean “bad” and not in the cool way that dudes with mustaches and motorcycles are bad to the bone. I mean it in the way that it’s life-ruining and soul crushing. But I try not to think about the life ruination and the crushing of my soul thanks to the faulty wiring in my brain, so I like to sarcastically refer to things as the opposite of what they actually are so that I will continue to get out of bed and hold a job and be a contributing member of society.