No painful event has befallen me, though I feel razed. Because of the sun. Unlike children’s crayon drawings, its heat is not orange and welcoming. Its heat is black and foul. Like asphalt. Like pitch.
Summer sops up my vigor. I wake up unwell, unrested, uneven. Inertia anchors me in front of screens. I could watch movies all day. Filling my head with other people’s acted-out emotions whisks me away in 90 minute intervals.
It shall pass. I know, I know, I know. Within a day, within a week, I will be chirping at my family, filled with odd songs and silly dances. Nevertheless, I marvel at how gloriously miserable I can feel when all is well.
The hardest thing about transplanting from sunny, arid New Mexico to lush, seasonal New England is not the climate. The hardest thing about moving to New England is sickness. We are awash in a sea of viruses.
Boston looms forty minutes away. Germs must hold massive conventions there, planning annual pandemics and local outbreaks alike. Our first year here we experienced an unparalleled infectious onslaught.
We arrived in New Hampshire during the special time of year known as “Norovirus Season.” As sure as leaves drop in fall, digestive systems convulse in late February. Alone in a new city, without a car or friends to help, our inaugural bout with this awful illness left us weak and drained. We ran out of everything— soup, crackers, Gatorade, even toilet paper. I vowed to never be unprepared again. Our pantry shelves now creak under the weight of Sprite and Campbell’s soup.
On his first New England birthday, my husband became so ill that he almost saw a doctor. Several days later I wound up in an urgent care since I coughed up blood. The bored doctor told me I strained my throat coughing and that I should drink fluids because I had a virus. My husband smirked and rasped, “Told you it was just a cold.” Eight weeks later, I smirked back—we had pertussis—whooping cough.
We were miserable. A pertussis coughing fit is like trying to gargle your lungs. You need to cough more than you need to breathe, and your lungs would feel much better on the outside of your body. The sensation is worsened by lying down. We wound up sleeping in different parts of the house due to unsynchronized coughing spells. We endured convulsive coughing spells for months.
And then, we came down with H1N1…
Seasoned New Englanders explained that the first year is the hardest for newcomers. Our bodies would adapt to regional bugs and we would healthy again in months. Heh.
Five years have passed and we still feel like the sickest family on the Eastern seaboard. Egor and I discussed this at length the other night. Why are we always ill?
Part of it is exposure. Big cities breed hearty immune systems. My husband and I grew up in hometowns with a surprising commonality—a scarcity of international traffic. Seasonal illness was rare in my secluded and sun-drenched town. Likewise, even large Russian cities were isolated in the 1970s; few people had permission to leave the city, let alone travel worldwide. Sickness was regional.
Culture also sheltered us from getting sick. Egor described how Russians responded to fevers. A doctor was summoned the moment a child had a fever. He prescribed a week of bed rest following the last day of fever. Sickness seldom spread school wide. My mother reacted similarly, considering it shameful to send an ill child to school.
Time, however, changes everything. No one legitimately fears contracting diphtheria, typhus, or measles in modern schools. Civilization mixes germs and people. Sheltering a healthy child from circulating viruses is counterintuitive. School provides an immune system education as well as an academic one.
Liev will need it.
Our immune systems have changed, adapted to New England. We are sick less often, less intensely. What hasn’t changed is our brains’ response to sickness. Under the thrall of illness, our self-management skills vanish. Ill health leaves me mentally hollow. I cannot focus, organize, or tolerate strong sensory input. I am impaired. Liev, at six, is much more so. A cold sends him zipping back toward toddlerhood. He loses his words and anxiety and irritability engulf him.
If I wished for one magic thing, it would be a steadfast plan for sick days. I accept the toll they take on my brain, but something is missing. Not a medication, or a diet, or a lifestyle change, but a pen and paper sort of thing–a way to use my gifts preemptively to tide me over on the ill days. I need the mental equivalent of my stash of sprite and toilet paper.
This is my grand challenge; to equip myself for the next round of viruses. Wish me well!
Last year, I discovered Asperger’s syndrome and emotional regulation were connected. For many on the autism spectrum, emotions come in three flavors: happy, depressed, and anxious. Typical people detect a broad, nuanced range of emotion, whereas some autistic individuals possess emotional dials that click on grooves set at too happy, too anxious, or too depressed.
My good moods have never been manic, but they are disproportionate. I’m rarely a little jolly; I’m full-on yahoo happy. My tipping point for bliss is low. A new set of watercolors evokes a shout and a jig, which I try not to perform in front of the craft store staff. Even when I eat, I am not normal. I am jazzed because these nachos are delicious!!!
My proclivity for cheer is a blessing. Despite other dysregulated emotions, I am grateful to bob in a mirthful sea.
Opposing happiness is depression. I equate depression with being tired. Not tired in an I-need-to-sleep way, but tired in an I-need-to-be-alone way.
This weariness is a murky, heavy sensation. Like a thick toxic gas, it engorges the limbs and stifles the mind. For me, this miserable state is indistinguishable from all other negative emotions.
In fact, I experience illness, tiredness, boredom, and depression exactly the same. I only differentiate these conditions by how they respond to various interventions:
Illness responds to rest.
Tiredness responds to tea.
Boredom responds to art.
Depression responds to activity.
Each time fatigue grips me, the Cure List brings relief. It may be cumbersome, but the strategy helps me more than any diet, therapy, supplement, or medication. I advocate a list strategy for all who struggle with “big chunk” emotions.
While I cannot differentiate negative emotions, I can categorize a thousand types of anxiety. Perhaps my experience of happiness and depression are crude because my mental wiring is bound up with endless gradations of anxiety. Every miniscule discomfort and nagging worry enjoys its own specific register. The unease of an unlocked door differs from the fretfulness of unsanitized hands.
Likewise, not recognizing someone I should know prickles my skin in a different way than missing an obvious joke.
My son, however, cannot discern anxiety from anger. To him, all anxiety feels like anger. I wonder how many “anger management” classes host similarly wired individuals.
Literature concerning self-acceptance tends to ignore the greater issue of societal acceptance. A person who experiences emotions differently than the majority can feel isolated, especially when pressure is put on them to conform. Emotions are our deepest, most personal gifts and the last place anyone should meddle.
I encourage spectrumites struggling with emotional regulation to pursue strategies to boost their quality of life. Keep a mood journal and look for “big block” patterns—that’s how I recognized that I experience negative states as tired and positive states as “really happy.”
Experiment with what helps regulation and document the activities that enhance wellness the most. After I’ve drank my tea, I kick-start a sluggish brain with some organizing (or spinning!). It pulls me out of a depressed day I would have confused with a sick day. And when I’m sick—Netflix!
I love floating through life with extra happiness. I channel the mental zing anxiety gives me into worthy tasks. I still struggle with negative states but my tools work well. I accept myself.
We each can be our own master, our own specialist, notebooks and calculator in hand. Even when our brains muddle over feelings we can use our strengths as data gathers and pattern recognition experts to craft our own wellness. Meet life’s persistent challenges with confidence by mastering the strategies that work best for you.
I was twelve the first time I took psychiatric medication.
The weeks leading to my treatment blurred into a smear of insomnia and discontent. Sleepless nights opened with horror stories read by the greenish glow of my aquarium light. When the words wearied me, I contemplated my fish bumping about in a lidless sleep. I felt like them, eyes open, insensate. Sometimes, I slept before sunrise. Other times I drifted through school without rest, as if I was another person imitating myself. As sleepless nights piled up, my eyes sunk inward and my cheeks blossomed outward from stolen sweets. Mom sought remedies and plied me with hot baths, vitamins, and sprite mixed with increasing amounts of brandy. Nothing worked.
I don’t recall seeing a doctor, but the relief his prescription brought me is vivid. Orange, triangle-y Triavil tablets took away racing thoughts and unwound the knots that kept my eyes sprung open at night. When I woke, well-rested, the real me became less of a shadow each day. A week after my former chatty, semi-pesky self resurfaced, treatment ended. We brushed off the incident as if I a headache summarily banished by aspirin. Months later, insomnia crept back, but to a lesser degree. The family deemed sprite and brandy a good enough cure.
I returned to medication in my early teens. Although I forget what precipitated this bout of nervous exhaustion, I recall my distress over stopping the remedy. Filled with dread, I peered into the bottle as tablets vanished. Weeks, months, an eternity of insomnia, seemed inevitable. When I appealed for more medicine, Mom reminded me how Dad had been overprescribed Valium for a back injury. The agony of his withdrawal enfeebled him for months, reducing a strong man to a husk. “I don’t want that for you, Lori. Let’s get a steady sleep schedule settled, and your body will adjust.” Sleep hygiene is a respectable approach, but it does not always work. My insomnia converted from a headache with a cure to a character flaw to battle with 7:30 wakeups. I coped with bedtime tumblers of Almaden wine and stuffing dark socks under my door.
I stumbled down valleys of sleepless despair and imposter syndrome ruminations for a decade before my wellness collapsed. It was more than wide-awake nights or disembodied days. My ability to function beyond shuffling to our sagging couch to watch cop dramas had ended. I did not shower, brush my teeth, or leave the house. I saw doctors, though. Some branded me “neurotic” or quizzed me about my periods. One grey balding physician told me I had “serious problems that would take years to overcome.” No diagnosis, just judgement.
I fought against antidepressants, insisting, “But I don’t feel sad!” True. I didn’t feel anything. Except anxiety and exhaustion. My older self would like to explain to younger me that depression is not always sadness. Depression can be restive, obsessive, and agitated. Tired of aquarium light nights and stuporous disconnected days, I went back to my childhood doctor who suggested Paxil. In two weeks to the day, I woke up…happy. My legs wanted to move, smell brought me pleasure, and colors became glorious again. At last, I could sense my heart in my chest, not as an anchor but as a buoyant entity to propel me up out of bed and into the world.
In the next ten years, I played leapfrog with my meds. On again. Off again. Pregnant-me took no meds and was happier than ever. Postpartum-me needed a truck of Lexapro. Moving-to-New Hampshire me thrived on change and novelty. My-son-was-diagnosed-autistic me needed medication to cope with hordes of specialists and their conflicting advice. Eventually, I realized the only way to avoid forays into the sleepless abyss was to take medication every day. Sometimes I am happy, others sad, but I can function. I can sleep. I am present for my family.
I accept waiting cheerfully in many situations. If Big Corporation puts me on interminable hold, I doodle or paint on old book covers. An hour vanishes in a short-staffed dentist’s office when I have a notebook. Bank lines are an opportunity to invent backstories for the characters I am in line with.
However, if I must wait fora phone call, I cannot focus. Even with a doodle kit or art room nearby, I am unable to sit, draw, or write. I think only of the phone ringing so I can get on with my day.
Likewise, if the cable guy is due between two and four o’clock; I fret and pace from 1:55 to 4:05.
To understand why waiting is sometimes pleasant and other times misery-making, I charted some observations:
My discomfort arises from what my brain is up to while I wait. In any line, I expect my turn will come. I foresee closure and it limits my thinking. The certainty of getting what I need removes ambiguity. My brain does not like ambiguity.
Ambiguity feels infinite. Faced with the intangible, my thoughts spin and branch, weaving an anxious web. This internal turbulence is difficult to describe. I can best relate my perceptions with an analogy.
Imagine you are at the top of a tall building and must descend dozens of flights of stairs to exit. You walk and walk; flowing smoothly down. Your feet know where to go, so your mind is free to think about dinner or other amusements.
The lights suddenly go out. You might be surprised, but you recall how far down the next step is and keep moving.
Then you think, “When will I reach the landing?” and “How many steps until the next set of stairs?” You cannot walk down the stairs without considering where you are. How confident are you that you can count your steps and navigate the landings without second-guessing yourself? Your mind becomes consumed with step-taking.
In my dark descent into ambiguity, I count steps, hoping nothing unexpected happens. My universe permits new possibilities. The number of steps between landings can vary. Even the height of each step is impermanent. Processing the possibilities makes each step an anxious one.
Limits reduce anxiety. Thirty stories in darkness is easier down a continuous spiral staircase. One could even think about dinner again.
This insight helps on a cognitive level, but behaviorally–my mind needs bigger bait than doodles and journaling. I need something else to cope with open-ended waiting.