Into the Deep – An Autistic Sensory Memoir – Chapter 3 – Gearing Up
Gathering up my belongings and heading upstairs requires another burst of focused attention. I stand slowly, bracing myself on the table, keeping my head and neck straight. Vertical. I tuck my journal under my left arm and slip the fingers of my left hand through the handles of my two mugs. They clank together, and I cringe as the high ding of ceramic on ceramic hits my ears. I pick up the empty bowl with my right hand, my thumb pressing the spoon against the rim so it doesn’t fall out. Walking gingerly to the kitchen, I’m still up on my tip-toes – careful, careful – my head swirling, my attention trained on the position of my body and avoiding any objects in my path. I can’t afford to bump into anything. I might lose my focus and drop my mugs and/or bowl. The spoon might fall from the bowl and hit the floor, piercing my ears with its clatter.
Careful… careful… Sitting at the table and journaling was a breeze, compared to the challenge of getting myself upstairs to the shower.
In the kitchen, I put the dishes down gently in the sink. The dull clank of mugs on the metal sink bottom is a sickening thud. The sound of the bowl and the shrill ding of the spoon striking the handle of one of the mugs is even worse. I can’t even put dishes in the sink without having problems. I hate this.
I run water over my dirty dishes, rinsing them under the stream. I can’t do more than that. I don’t have the energy to wash them and put them in the drainer. My partner won’t be happy about it when she gets up, but this is all I can do. It’s more than I feel I can do. I leave my journal on the kitchen table. I’ll pick it up later. I don’t want it to distract me as I climb the stairs.
Back across the kitchen I go, tip-toe. Tip-toe. Down the hall. Tip-toe. Tip-toe.
I move up the stairs carefully, deliberately gripping the banister with my left hand and trailing my other along the rough wall on my right. I’m worried again about losing my balance and falling. The steps don’t feel level beneath my feet, and the hallway seems to sway around me. I have to take it slowly and keep my posture straight. I sometimes trip on stairs, when I’m not paying close attention, and today I’m just not able to pay close attention to the stairs and move smoothly and keep my head aligned in a way that will keep me balanced. My progress feels painfully slow, as I hang onto the railing and place one foot carefully atop each successive step. Irritation wells up in me, but I press on.
But I do eventually make it to the top of the stairs, which is a relief. And the bathroom is directly in front of me, which simplifies things.
I step forward through the doorway, and as I steady myself with a hand on the cool tile of the wall, I turn on the shower and crank the spigot to the hottest setting. While the water warms up, I put some toothpaste on my toothbrush and set about clearing my mouth of the taste and feel of breakfast. My teeth are coated with a thin film of oatmeal. My tongue feels numb. It tastes metallic. The lingering flavor of acidic coffee lines the sides of my tongue and extends to the back of my mouth where my my throat begins.
As I brush my teeth, the vibration of the toothbrush rumbles deafeningly in my ears. My ears feel thick and stopped up, and the density in them seems to amplify every movement of the bristles across my teeth. But I need to brush. I need to get clean. The taste of coffee and the feel of oatmeal on my teeth is distracting me, throwing me off. It intrudes. I know it’s nothing, but it’s tugging on my attention and fragmenting my focus, making me dizzy when I briefly notice it and stop concentrating on staying upright.
So, I scrub. Back and forth and up and down. Hard. The sound of my toothbrush is almost unbearable this morning. I try to take my mind off it by thinking about what I need to do today, but then a blob of toothpaste falls to the counter, and when my eyes follow it instinctively, my head spins and my stomach lurches. I brace myself on the edge of the sink trying to regain my balance, shaky from a flash of anger at the thought that I cannot do such a simple thing as brush my own teeth in the morning without falling over.
I splash water at the white blob, hoping to wash it down the drain, but it’s stuck on the side of the basin. The water wets the sleeve of my sweatshirt and pantleg of my pajamas. Another wave of anxious frustration washes over me. I cannot stand the feel of wet clothes on me. I’ve never fully understood why; all I know is, the feel of damp fabric on my skin is very distressing. It’s never easy, but this morning, I cannot tolerate the sensation – especially on my forearms and wrists. I have to get away from it – Stop the sensation! Stop it! – as soon as possible.
But I can’t escape yet. I’m not done brushing. Systematically, I finish rinsing out my mouth, then pull my sweatshirt and pajamas off in a frenzy. Stopping to catch my breath, I steady myself with one hand firmly on the towel rack. My head is spinning and my stomach is queasy. I have got to get my act together. I pause to collect myself, then I pull back the shower curtain, and a cloud of steam billows up to surround me.
Still holding tight to the towel rack, I step into the shower. Ahhh…. The water feels wonderful. Hot. Steaming. I move slowly into the stream… deliberately, keeping my body fully aligned. I fix my gaze intently on the square tiles in front of me, particularly on a rectangle of glue residue below the shower head that darkens one of the tiles in front of me. The blotch appears to be left over from the prior occupants of this house, who probably had a shower caddy of some kind attached to the wall. The caddy is long gone, but now the dark patch is useful as I focus with all my might on that single spot.
My head spins, and I reach out to the tiled wall to keep my balance. The smooth coolness of the tiles under my fingertips calms me, and I run my fingers along the thin, recessed lines of grout, relishing the roughness under my skin, directing my attention on that single sensation in the midst of all others. As my fingers trace the straight lines, I find my attention drawn to the smooth miniature hills that flank the grainy valleys between them. I count off the number of tiles beside me – 1, 2, 3, 4, 5… my hands trailing back and forth along the surface beside me. After a few moments, I feel more stable, grounded by the counting and the contrasting sensations. Hot water cascades down on me, as I rock back and forth, lifting myself on the balls of my feet – back-and-forth-side-to-side-back-and-forth-side-to-side – rhythmically feeling my body calming with the cadence.
Now I can pay attention to taking my shower.
I have to be careful under the running water. I have to keep my eyes open, or I feel like I’m going to fall, but I also can’t stand getting water on my face, and I hate getting water in my eyes. I’ve been this way since I was a kid, terrified of submerging my face and hating the feel of wetness on my skin. I have to keep my balance. I have to keep my balance. I have already nearly fallen in the shower several times, this past week, and the idea really worries me. In my mind’s eye, I have sudden visions of myself toppling and breaking my hip or my leg, and my partner not waking up to find me until hours later. My imagination plays out short, distressing “films” of me hitting my head and knocking myself out and lying motionless under the hot shower, scalded by water that I can’t make cooler. A hundred different catastrophic images loop through my mind before I bring my attention back to my shower.
I absolutely hated taking showers when I was a kid. As sickening as it is for me now, to close my eyes in the shower when I’m having problems with my ears and equilibrium, it was even harder for me when I was young. Baths weren’t much better. Sitting in a bathtub filled with smelly, soapy water… unable to balance when my eyes were closed, slipping into the water because I was so slight and slippery, getting water on my face, up my nose… unable to feel the sides of the tub because my fingers were “raisins” and wrinkled, and I couldn’t get a good grip on anything to stabilize myself… It was nerve-wracking just thinking about it, let alone experiencing it.
I also found my grandparents’ house to be very hostile… just because of the water. They softened their water with sodium chloride, and I hated the feel of the soapy, slick feel that was so disorienting for me. I never felt like I was getting clean or dry when we visited their house, and in retrospect, I suspect that’s why my parents didn’t have us kids stay over that much. I got easily agitated at their place, “disobeying” my parents and acting out in other ways. Visits to my grandparents were usually punctuated with plenty of “unacceptable” behavior, like loud, “unladylike” rowdiness and “temper tantrums”. Years later I now realize the feel of their water probably contributed to my “behavior problems”. Not only was I on sensory overload, but the way I soothed when I was stressed – with touch and tactile stimming – wasn’t even remotely possible, thanks to their soft water.
If I’d known then what I know now about how their water affected me, I might have been able to explain why I was such a problem at their house. But I wasn’t, and I couldn’t. So my parents had to cope with my “bad behavior”, as well as my grandparents’ obvious disapproving judgment of their parenting skills. But knowing – even now – how distressing and agitating some experience of water have always been for me, I doubt that anyone’s parenting skills would have been adequate to keep me in check during those times of intense agitation.
Now, fully grown, with one hand on the wall and the other resting on my sternum, I face the shower head, letting the water pound the back of my hand reassuringly. My vision is fixed on the straight lines of the tiles in front of me. That helps me keep my balance. Parallel and perpendicular lines help me orient myself. They make everything stop spinning. Whenever I start to feel woozy, I run my eyes along the straight lines – up-down-left-right-up-down-left-right – and I feel better. The stream pounds me and hot water flows downward, washing away my distress in a steady rhythm.
I hold very still as I wet down the front of my body. When I’m completely soaked, I turn slowly, stiffly… careful-careful… to wet down my sides and back. I keep my eyes open the whole time, holding my head up so the spray doesn’t hit my face. I keep one hand on the wall at all times to steady myself as I rotate, until my body is completely wet. My skin needs to be completely slick, so that when I soap up, the bar of soap moves smoothly across my body. If the bar hits a dry spot, it will jump out of my hands, and then I’ll have to bend down and pick it up. It’s happened before, and it’s no fun leaning down and feeling yourself listing out of control. Especially first thing in the morning, when you’re just trying to get ready for the day. Today, my balance is so bad, that I doubt I can do anything as complex as retrieving anything lower than knee level. If I drop the soap, it’s staying on the bottom of the bathtub till my partner can pick it up.
Now I need to soap up. Holding myself ramrod straight, I press one hand against the smooth, cool wall beside me and bend my knees to lower myself to reach the soap in the holder that’s recessed into the shower wall. I don’t look down, but feel my way towards it, as though blind. From my peripheral vision, I can tell roughly where the soap is, and I pick it up carefully, holding it as firmly as possible. I cup the bar in my hand and run it all over my slick body, then I put it back in the holder and try to lather myself up as much as possible. I need to get clean. I have to be clean. People make rude comments to/about me, wrinkle their noses, and behave strangely towards me, if I’m a little “funky”, so I take special care to make sure I’m as well-washed as possible.
Then I rinse off… again turning carefully and stiffly under the shower, one hand always on the wall, the other swiping soapy water from my body, pausing whenever I feel like I’m losing my balance. It happens fairly quickly, but I’m so focused on each and every little detail of every single move, it seems to take forever.
Now, to wash my hair.
Shampooing my hair isn’t my favorite thing, but it’s even more nerve wracking when I’m “balance-challenged”. I can’t keep my eyes open when I’m rinsing my hair, and closing my eyes makes me feel like I’m falling. Of course, I have to wash my hair, for the same reason I have to brush my teeth and wash my whole body. But this phase is much more labor-intensive for me. It’s bad enough that I need to close my eyes at some point during the process, but I also need to use both hands to rinse all the soap out.
I steady myself and take a deep breath, then turn to get the shampoo bottle the same way I got the soap – bending my knees to keep my back straight and my head aligned – and I squeeze some shampoo into my palm. With my back to the flowing water, I plant my feet firmly, keeping my eyes fixed on the tiles in front of me, and I rub the shampoo into my hair. I hastily scrub-scrub-scrub, trying with all my might to keep my posture straight and my head aligned. After my hair feels saturated with suds, I step back gingerly into the shower spray, with one hand firmly against the wall, slightly tilting my head back. I rinse out my hair as quickly as I can with my free hand, my long-practiced movements urgently sweeping suds out of my hair as thoroughly as possible, while I still have my stability. Since my back is to the water, I don’t have to close my eyes. And it’s a good thing, too. I can’t tolerate having tilting my head to rinse out the shampoo and having my eyes closed.
After my hair is rinsed, I turn carefully back to face the shower spray, my gaze following the horizontal lines of the tile. I stand for a long while under the flowing hot water, feeling it coursing down my body, soothing my frazzled nerves. Slowly, I begin to rock, shifting my weight from one leg to the other, with a lift of each foot. Back and forth, back and forth, the soothing cadence calms me, gives me time to catch my breath and let my thoughts wander freely.
My thoughts aren’t the only things that wander. As I stand absolutely still, I feel my eyes rhythmically drawn to the upper left-hand side of the shower wall in front of me. My head follows my eyes and moves to the upper left as well. It actually happens a few times before I realize what’s going on. To someone watching me from a distance, I’m sure it would look strange, spasming. I feel strange as this happens, too, as though someone else were controlling my eyes and head. But it also feels so good when it happens – the repetitive motion is a relief, and it quiets my racing thoughts. So, I simply hold my torso still, hands on the tile beside and in front of me, and let my eyes and head do what they will. I’m not in pain, I’m not feeling discomfort, and I’m not even that concerned with this odd movement. I’m just enjoying the feel of the hot shower, allowing my system to relax into what it needs.
After a little while, it occurs to me that I’m falling behind. Again. My hands are wrinkled from the moisture, and I feel uncomfortable and uncertain as I fumble with the spigot and try to feel the shower curtain. My wrinkled fingers aren’t picking up sensations the same way as when they’re dry, and that bothers me. It disorients me. It makes it difficult for me to think and function.
Stabilizing myself with one hand on the wall, I turn off the water and pull back the curtain – slowly, slowly – my posture rigid, upright. I hold firmly to the towel rack, as I step out and then reach for my towel.
I’m almost there. I’m almost done.
As I dry my face, I notice a musty smell coming from the towel. A flash of sudden fury tears through me. Goddammit! The towel is sour. Then comes the sick, sinking feeling. Have I been drying off with a sour towel for days? A rush of agitation rocks me. My sense of smell is highly variable – either it’s on 150% or it’s very faint, maybe 27%… maybe 12.5%. Sometimes I have no sense of smell at all. In the past when I have toweled off with sour towels and I didn’t smell it, I would find out from other people that I stank much later in the day. There was nothing to be done, other than keep away from the people who objected to my smell, and it dismayed and embarrassed me in ways that never quite went away. The reverberations of my delayed humiliation well up, whenever I encounter those people again at work, and I instinctively sniff myself, to make sure I won’t make that same mistake twice.
Discovering that I’m drying off with a sour towel is not a small thing for me. Especially not this morning, when I have so little margin for error, to begin with.
Even though I’m still dripping wet, I stalk out to the hall way to get a clean one out of the linen closet. I’m wet and cold and angry, and I’m very much on edge. I try to move quickly, but my movements are jerky, and for a few moments I have trouble opening the door to the linen closet. My hand fumbles on the door handle. I can’t feel it. I can’t feel it. Augh! I yank it open with a clumsy jerk. Why am I so impaired this morning? This is terrible! I hate this. As I look through the shelves, I cannot see a towel that I can use. Some of the towels are for me, and some of them are for my partner. I never use hers, and she never uses mine. I search anxiously, seeing plenty of hers but none of mine.
Then I look up to the top shelf and spot one I can use. I pull it down and toss the sour towel into the nearby laundry hamper. Then I take my fresh new towel back into the bathroom and close the door behind me. Now I can return to my toilette, but not before sniffing the towel like a suspicious animal.
After I’ve satisfied myself that the towel is fresh and sweet-smelling, I dry my hands thoroughly, then dry off from head to toe in the same sequence as usual: First my face, then my hair, then my neck and shoulders, then my back. Then I lift one foot – and the other – onto the side of the sink and dry my legs. As I do, I check myself for bruises or other injuries.
I check myself for bruises and cuts each morning. My sense of pain is highly variable. Some things, like damp clothing and certain fabrics, irritate me to no end and I cannot escape the feel of them. Other things, like bumping into sharp corners and banging against stationary objects, are all but undetectable to me. Sometimes, I bruise myself badly, but I have no recollection of having made contact with anything. Or sometimes I notice when I make impact, but then promptly forget about the pain. Only when I check myself later, do I realize I’ve actually bruised myself. I’ve found deep purple plumb-sized bruises on my shins and thighs, with no memory of how they got there. Sometimes I wonder if I walk in my sleep and get them that way.
Once, I made the mistake of mentioning this phenomenon to a therapist I was seeing. She had some 40 years of experience working with women who were trauma survivors. She’d seen many clients with issues like self-harm and dissociative disorders, where they’d “blank out” under traumatic circumstances and not not remember having done something – including injuring themselves to escape their pain. When I told her I checked myself each morning to see if I’d hurt myself, she suddenly became very attentive and her demeanor changed. She started gently suggesting that I talk more about my past traumas, as though there were a terrible, deep, dark secret I was keeping from her.
I didn’t understand at the time, but later it occurred to me that, given her professional history, she may have thought that I was talking about checking to see if I’d self-harmed while I was in a dissociated state. After many hours of thinking back over that exchange and the direction our therapy sessions took after that, I’d bet money on it. What a waste of time (and money) it was to chase down a problem that was nothing of the kind. And it was all because she never imagined that reason might be my variable sense of pain. I tried to tell her, but she’d already decided what my “real problem” was and tried to treat that – while ignoring the very real issues I faced on a daily basis.
As I dry off this morning, I examine the old bruises on my shins to see how they are healing up. Blue and green and yellow splotches tell me I’m doing fine. The only new injuries are the new faint blooms on my hands, where I slammed them against the cupboards earlier. Later today, they’ll start to darken, then they’ll turn purple and green and yellow. And people around me may notice them and comment. I’ll just tell them I was doing some chores and had a close encounter with a counter. That will be factual, but it won’t be exactly true. Never mind – the important thing is to explain it plausibly, and hopefully avert the suspicion that I’m being abused at home. That possibility has been raised before, too, by people who knew all about trauma, but nothing about autism and sensory/coordination challenges.
Okay, I’m showered, shampooed, and clean. I’m good. I’m dry. I’m checked out. Now I can safely join the rest of the world. I take a deep breath as I wrap my towel around me and walk slowly into the bedroom.
… to be continued … watch this space for more…