In the late 90s, I had a black cardigan that I wore when I went out at night. It was synthetic, ribbed, and had gold tinsel woven into it to make it sparkle. I would wear it, my curly hair pulled up in tiny clips with butterflies or dragonflies, my lips and lids burnished, glitter shining on my cheeks and cleavage.
I’ve known for a long time, about twenty years, that I have trouble recognizing, identifying, my feelings. After a series of suicide attempts in 1999, I moved across the country for graduate school and began therapy in earnest. My therapist, whom I saw twice a week that first year, gently encouraged me to describe my feelings instead of “storytelling”, which she suspected was my way of deflecting from my pain.
I would try, answering that I felt “upset” by any particular situation. For instance, I was upset when the wife-half of the married couple I was dating chastised me for wanting to celebrate our successful poetry readings at home with her and the husband-half. She wanted to celebrate at a bar with our classmates and told me that by not joining them I was not being a good friend, even though I dislike crowds. Likewise, I was upset when one of my professors told me that I was not ready for graduate school and she didn’t understand why I was there when I couldn’t even make it to class on time.
When my therapist would coax me to examine my feelings further, reminding me that “upset is not a feeling, it is a reaction”, I would sit silently as the seconds turned into minutes, biting my lip and staring at a white wall in my head. UPSET UPSET UPSET ran across it in a banner. My therapist would wait patiently. I would finally look up and say, shrugging my shoulders, “I don’t know. I feel upset.” And she would ease away from that pressure and listen to the next tale I had to tell, perhaps the one about the department head sliding his hand under my shirt as easily as flipping through a book, or my boss kissing me under a tree in the moonlight and whispering, “I have dreamt of embracing you here so many times” while I swooned.
That black cardigan I wore was everything uncomfortable: from the relentlessly scratchy tinsel to the stretchy synthetic material that was most-definitely-not-cotton to the elastic ribbed cuffs and waist that felt as tightly cinched as a corset and left marks on my skin. But, when I wore it, I “passed”, moving seamlessly into that outside world. When I would blunder, this cardigan was my get-out-of-jail-free card.
It allowed me to flash a girlfriend to prove that I was going commando just like Joey did on “Friends”. At least it did the the first time, as that cardigan and I created an image of a spontaneous free-spirit. When she responded positively, I flashed her over and over again — a soft, sensational breeze flowing up my legs with each flap of my dress — until finally she put her hand over mine and said, “I get it, and it is sexy, but enough.” Still. The cardigan and accouterments gave me some leeway in social situations, so I wore it despite the intense unpleasantness. It was as though the cardigan was the deflection, the sparkles reflecting back images instead of revealing the me inside.
I eventually began using some fallback terms to describe my feelings: happy, sad, mad, scared, anxious, frustrated, lonely, misunderstood. But, there were no nuances. No blissful, wistful, resentful, terrified, panicky, exasperated, abandoned, misled. As the years have passed, the luster on the fallback terms has worn off from repeated use, and what I am left with is even simpler. Comfort and discomfort.
The feelings I feel all come down to those two sensations. I don’t actually know what happiness is, just as I don’t know what sadness is. I can use those terms upon reflection. How many times have I said to Adrian or my therapist, “I think I was feeling anxious about _________.”? In the moment, however, I think to myself “I feel comfortable” or “I feel uncomfortable.”
When I imagine happiness, I imagine sunshine on my face. But, when the reverse happens, when I step outside and feel sunshine on my face, I don’t think “happiness”; I think “comfort”. When I imagine sadness, I think of my mother who died several years ago. As I cry about my mother’s death, however, I don’t think “sadness”; I think “discomfort”. My body is overwhelmed and tears start pouring down, my shoulders sagging, breath hitching. It is a kind of exorcism, an expulsion of that discomfort.
When I would reach whatever destination I had, be it a party or bar, I would immediately take that black cardigan off, draping it like a sommelier’s liteau over my forearm. The discomfort would then be minimized to a small section of skin, rather than my entire upper body, the back of my neck included. The eventual happened. I left it behind one night after a concert, either at the the venue where Sting performed or the restaurant we had gone to earlier.
By the time I realized I had lost the cardigan, the venue was closed, as was the restaurant. I stared through the plate glass window, smooth beneath my forehead and forearm, moaning, “It isn’t here,” just as Linus did while searching for his beloved blanket.
Why did I want that cardigan back when the way it felt against my body required that I lotion extensively and later only wear the softest cotton to soothe my raw skin and nerves? Because it was the identification card that proved I was “okay”. Without it I was … uncovered. And when I grow attached to something, losing it feels like losing a part of myself, even if that part is an oppressive mask.
A few evenings ago, I told Adrian that I felt lonely. He stood half in my doorway and half out, because he was in the middle of eating his dinner and, after refilling his water glass, had stopped by my room to see how I was doing. I had pulled my groin muscle in my boxing class and even readjusting in my bed was painful. Ours was supposed to be a quick interaction, maybe accompanied with a request for ice or massage before bed. But now Adrian was trapped. I could practically hear him wondering if he could actually leave after I made an announcement like that. A frozen moment passed and then I said, “Go finish eating. It’s okay.” And it was okay, because this wasn’t about his response; it was about how I felt.
After he left, I couldn’t take it anymore and cut my nails. They had grown to just the tips of my fingers and they dug into my palms, dragged along my bedsheet, and tapped on my keyboard as I typed. Argh! I thought. It feels so icky! After filing them, I felt instantly better. I put an ice pack on my pulled muscle and tugged my oversized hoodie over my chilled body. Aahhhh, even better. I changed socks — the ones I had on were mismatched, one too tight, the other sagging at my ankle. I felt comfortable. I laughed a little.
“Adrian!” I called out. “How could I be lonely? You and I had Family Time just last night and Loverne and I went to the movies earlier. I am so sorry. Sometimes I can’t figure out how I feel.”
Later that night, I read from I am AspienWoman: The Unique Characteristics, Traits, and Gifts of Adult Females on the Autism Spectrum. One woman described having, as part of her sensory processing disorder, interoception struggles. Interoception? I wondered. I knew about auditory, olfactory, visual, tactile, and gustatory. I had only heard of five senses. What is this interoception?
Of course, being the autist I am, I researched it immediately and comprehensively. I first learned that there are eight senses, the ones I named above plus interoception, proprioception, and vestibular. I next learned that sensory processing sensitivities are not limited to sensory discrimination. When we are in the car and Adrian is talking while the radio is playing, I have a difficult time discriminating one sound from the other. It is all white noise to me. That is sensory discrimination sensitivity. There are two other patterns, however, one with modulation (regulation) and the other with motor skills. Each of these patterns has at least two subtypes, leading to hundreds of thousands of variations and combinations of sensory sensitivities! Below is an infographic that breaks down the patterns and types. This page describes each of these patterns and subtypes in wonderful detail and helps provide great understanding of sensory processing.
While I am still learning about myself and the various ways my sensory sensitivities present, I immediately identified with interoception, both with under-responsivity and over-responsivity. I don’t notice when I have burned myself and even ended up with a second-degree burn at one point. I also didn’t realize that my sparring partner had missed my kick-shield and chipped my bone until days later when a bruise crept up my shin and down over my foot. On the other hand, the moment I feel the slightest heaviness in my bladder and bowels, I must evacuate them otherwise I cannot concentrate on anything and I feel fluttery and clenched at the same time.
What if, I pondered, the feelings that I identify as “anxiety” and “frustration”, or, perhaps more accurately, “discomfort” are related to my interoception sensitivities?
Now, I do have anxiety, especially when there is change to my routine. But, maybe some of my anxiety is actually my inability to recognize my own body’s signals. And what about vice versa? Maybe I would be able to identify the anxiety more quickly if I could recognize my body’s signals. Same with pain, hunger, sickness, frustration, and all of the other sensations that lead to discomfort.
I never did find that cardigan again. I mourned it, obsessively shopped for one that resembled it — to no avail. It had long since gone out of style. I had to morph, find a new mask. It was easy enough. I was studying in a warm, tropical city, where my long petticoats and loose curls suggested an exotic sensuality that I easily fulfilled. I preferred multi-partner relationships, in which I didn’t have to bear the burden of being one-half of something. I couldn’t handle the pressure nor could I provide the balance due to my need for solitude. The new look also provided comfort: cotton against my skin, no visits to the hair salon. Now when I blundered, it was acceptable because I was unconventional, quirky, and independent. While still a mask — I am not, after all, exotically sensual so much as I am cosy clothes and solitude — while still messy, this was, in some ways, easier to wear.
I had told Adrian that I was lonely and then had cut my fingernails, iced my muscle, and put on warmer clothes. After that, I felt instant comfort. Hmmmm … I began putting the pieces together. How about last month when I cried because I was “so stressed out”? I hadn’t eaten in almost ten hours, had been working at the computer all day, and hadn’t had my usual cup of afternoon tea. With Adrian’s assistance, I ate my everyday sandwich, sipped my Indian tea, and the stress just floated away. Hmmmm.
I decided to come up with a method in which I can better identify my emotional and physical responses and what I can do to self-care. I ordered six sets of flashcards with rings and fun labels (these are the products I purchased; I do not receive any compensation from the companies that provide them). I then named each set of cards using the labels:
- I Feel (Emotionally)
- I Feel (Physically)
- I Need
- Please Will You
- Missed Routine
I filled in the blank flash cards of each set with responses. Some examples:
- I Feel (Emotionally): anxious, lonely
- I Feel (Physically): tired, hungry
- I Need: exercise, company, sleep, to eat
- Please Will You: lie on me, spend Family Time
- Missed Routine: morning ablutions, green tea with special mug, meditation
- Not-Routine: social engagements, doctors appointments, guests, workers in house
At least once a day, and whenever I feel “weird”, “anxious”, or, as I am trying to recognize it, “discomfort”, I go to my flash cards and try to find sources and solutions. The process might look like one of the following:
- I Feel (emotional): anxious –> Missed Routine: meditation –> I Need: to meditate
- I Feel (emotional): anxious –> Not-Routine: going out to dinner –> Please Will You: lie on me for five minutes before we leave for dinner
- I Feel (emotional): misunderstood –> I Need: quiet time for five minutes –> [five minutes later] I Need: to be heard –> Please Will You: listen to me, give me your undivided attention
- I Feel (physical): clothes are too tight –> I Need: cosy clothes
- I Feel (physical): food against front teeth –> Missed Routine: cutting apple, using small ramekin –> I Need: to cut-up apple, put apple pieces in small ramekin
- I Feel (emotional): frustrated –> I Feel (physical): cold, stubble scratching against my cosy pants –> I Need: a hot shower, to shave
I have only been using these cards for a few days, but they have already had an effect. I feel steadier, more in touch with my physiology, more-in-the-moment with it. Just as I traded in that scratchy, stretchy, synthetic cardigan for softer, looser, cotton skirts, I have found a coping mechanism that will hopefully help me understand myself better and maneuver through the world with more comfort, as well as stop me from mislabeling my feelings, which can lead to meltdowns, accusations, and self-loathing.
This procedure forces me, ironically, to step out of my comfort zone. After all, accurately identifying what is causing the discomfort can cause discomfort in and of itself. Acknowledging the unfathomable depths of my sensory sensitivities has been humbling yet empowering. Missing my mother, feeling misunderstood by Adrian, being dismissed and ridiculed by Dr. Devell during my formal evaluation — these are painful experiences. Sitting with that discomfort — accepting my sensory needs and their far-reaching effects, allowing myself to cry or express my perspective or end an unhealthy therapy — can all help me process and move to a place where I feel sunshine on my face again.
And, I keep in mind Carrie Fisher’s words: “My comfort wasn’t the most important thing – my getting through to the other side of difficult feelings was.”