There is a chapter in Annie Proulx’s novel The Shipping News where the main character Quoyle is helping boatbuilder Alvin Yark finish Quoyle’s new boat. The curved timbers leaning against the wall of the shop remind him of the body of Wavey, the strong and quiet woman he has fallen in love with in Newfoundland. If they were to marry, he wonders, would his dead adulterous wife Petal and Wavey’s drowned philandering husband Herry be in the bed with them? “He imagined the demon lovers coupling, biting and growling, while he and Wavey crouched against the footboard with their eyes squeezed shut, fingers in their ears.”
This image makes me think of Andy and me, crouched at the foot of our bed, while our respective disorders duke it out or mate or both. Asperger’s Syndrome and Anxiety Disorder, in pitched battle – or union. There were days when I would have loved to claim that Andy caused my Anxiety Disorder, that his constant state of apprehension, his overreactions to perceived threats, his loud outbursts at unexpected times, his unwarranted criticisms, were what set into overdrive in my brain the mechanism for releasing high-alert neurochemicals. That my brain became corroded from too much adrenaline and eventually turned my body into a twitching marionette. But that would be untrue.
I think back over my life and realize that I have always suffered from anxiety, even as early as age eight. In third grade my arch enemy was Lisa Miller. I really hated her, though I couldn’t tell you why now. I was all excited about Brownies, even showed up to the first meeting with my little chocolate-milk-colored skirt and beanie, until I realized that Lisa’s mother was the troop leader and Lisa the troop star. I turned in my vest without even a single badge.
One day in third grade we were working with rulers and those pink parallelogram-shaped erasers, which I realized in combination would make a tremendous catapult. Mrs. Bergner was writing on the blackboard, so I placed the eraser on the end of the ruler, pulled the ruler/eraser back with my right hand, holding the ruler’s other end in my left, and TWANG! let it fly. I nailed Lisa right on the side of the head, a direct temple hit. She turned to me, mouth open, stunned, and immediately raised her hand.
“Mrs. Bergner, Maureen just hit me in the head with an eraser!”
“Maureen?” Mrs. Bergner turned from Lisa to me, stunned. I was the Class Angel. This was unprecedented.
My face turned white. I couldn’t even speak. My head turned cold and I could feel my hands start to shake.
“I’ll talk to you after class,” Mrs. Bergner said to me, clearly mystified.
At 3:30, when everyone else had left, I stammered and stuttered through a complete lie: It was an accident. I was holding my ruler and eraser and somehow it just happened. Accidentally. The eraser arced across the room and I was as surprised as anybody. I was sorry. I would be more careful.
One of the benefits of being Class Angel is that the teacher always believes you. Mrs. Bergner smiled and, knees bent to put her face at my level, said, “I didn’t think you could have done something like that on purpose.”
I smiled through my tears, clutched my gnome bookbag to my chest and walked carefully out of the classroom. I walked down the stairs, past the doorway to the basement storage room filled with construction paper and glue where we hid during air raid drills, and out the big front door.
Once outside, I ran. Down the one block of Rogers Avenue, past the dark narrow driveway between houses where I had fended off Jamie Barrs and his cooties with my umbrella, slowly across East Avenue via Mrs. Meisner the crossing guard, past the park where I had lost my copy of Farmer Boy (found and returned to me by my hero Perry Beardsley because it had my name on a gnome nameplate on the inside front cover), past Bud’s Liquor Store where my father bought gin for Leona our sick old lush neighbor and for himself, across the street, past the house where our adopted dog Tuffy really lived, past Juniper Street where down in the shady depths lived Josie Sowicki, the teenage felon who walked home right on top of my heels to scare me, past Chrissy Caputo’s house, and up my driveway. I hurled open the side door, flew up the four stairs into the kitchen and threw myself on my mother’s mercy.
“What’s wrong?” she exclaimed, distressed at my tears.
“Can’t … you … see … how …late…I …am?” I managed between sobs.
“You’re not late, honey.”
“That’s … ‘cause … I … ran … the … whole…way!!” I bawled.
“What happened?” she asked, soothing me.
Of course I lied to her, too. It was unthinkable that I had done something wrong. Unthinkable. It could not be admitted. I was an angel. So I covered my sin.
Nowadays, our own three boys never get this bent out of shape when they get in trouble, so I do believe my reactions to the eraser event could count as early symptoms of my anxiety. I don’t know where it came from: Catholicism, being the little cute one, covering up my parents’ problems (which I didn’t have a name for at this point). But I knew it would never happen ever again. Ever.
In high school my anxiety took a more destructive turn, and clinical problems cropped up. My beloved older sister had left for Japan. My silent older brother was home but inaccessible. My father’s drinking had gotten worse and my mother’s reactions to it more extreme. I was the perfect invisible daughter with the high grades and the spotless behavior record. The only thing I was not was thin … well, not thin enough. Gwen Everett was gaining eleventh-grade fame prior to the Junior Miss pageant by losing lots of weight: everyone speculated she was using diet pills. That seemed like a good route to the icing on my own cake, so I decided to starve.
The only problem was that when I got home from school, I felt so sorry for myself and also felt I so deserved a reward for my high grades and perfection, that every day I gave myself a treat – a big treat. A gallon of ice cream. An entire pie. A whole package of Oreos. Once I was blissed out on sugar, an image of Gwen would pop into my mind and horror struck. Up I’d go to the second-floor bathroom where I would close the door, drink an entire glass of water, leave the tap running, and vomit the entire indulgent feast into the toilet.
Again, I think I might call that anxiety. I have since read that bulimia has been linked to abnormalities in serotonin levels in the brain, the same neurochemical implicated in anxiety. I do not know if the stress of living in an alcoholic household altered my serotonin levels or my genetically low serotonin levels caused me to overreact to any perceived threat or if my eating order left a serotonin “scar” that caused anxiety to chase me for years after. I have even speculated that my father drank to self-medicate his own genetic anxiety disorder. Whichever way the sequence went, anxiety got pretty firmly entrenched.
Even through college, I feared new situations, social gatherings, speaking in class, lots of things. Mid-way through my Bachelor’s, my dad went to rehab, I grew up, met Andy, found my feet, and the anxiety seemed to subside for a while.
Then we moved to the farm. Talk about tense. For years we barely made ends meet. We would just throw weeks’ worth of mail in the trash because we knew we couldn’t pay the bills. I remember sleeping on the floor by the woodstove because we couldn’t afford fuel oil and finding the cupboards bare except for a solitary can of kidney beans.
And there was Andy’s dad, our financial backer, breathing down our necks, and me struggling to find a job that paid decent with an English degree in rural upstate New York, and trying to decide if we could stick it out or should give it up and be ostracized by the Bartlett family. Gracious! the work, the worry, the fear.
And also, though not named at this time, there was Asperger’s Syndrome. While Andy and I, our purest essential selves, cowered at the end of the bed, our two mental difficulties would come out swinging: Asperger’s Syndrome and Anxiety Disorder in head-on-head combat. Each would choose its symptom of choice and throw it out there to wage war against the other one’s symptom of choice. It was like a Pokemon battle.
Asperger’s says, “Extreme overreaction to perceived threat, I choose you!” and Andy would melt down into a rant and rave over a problem in the barn.
Anxiety fights back with, “feelings of panic, fear and uneasiness” and I would go racing around, quivering, trying to help or deal with the problems or clear the deck ahead of Andy so nothing would cause an outburst.
Asperger’s strikes out with “lack of empathy or understanding of another person’s perspective” and Andy would call me at 9 AM on my first day of a new job to tell me we were being sued by the neighbor for five million dollars.
Anxiety throws back “abnormal apprehension and fear” and I would spend the morning not only quaking through my first day on the job but also practicing my testimony in court about the tractor accident.
Asperger’s pulls out “uncontrollable rage” and makes Andy swipe all the items off the top of my dresser.
Anxiety pulls out “sensitivity to criticism” and hurls me out into the cold haymow where I fume and cry and wish I had somewhere else to go.
This epic conflict went on for years until it finally came to a head. April truly is the cruelest month. One April I was in a car accident with five of my favorite students, and the next April we had a sociopathic liar holed up in our employee trailer, exploiting a Worker’s Comp injury and threatening to sue us if we fired him. We sent the kids to my Mom’s for April break and kept the shotgun in our bedroom.
Something about this one-two hit really threw me off the deep end. I started developing every physical symptom of anxiety that exists: heart palpitations, hot flashes, dizziness, shortness of breath, tunnel vision, numb fingers and toes, loss of balance. My doctor ruled out every possible physical problem through heart monitors, MRIs, blood work. And still these symptoms persisted.
Finally Andy took the bull by the horns. One really great thing about the Asperger’s flight-or-fight response is the fight half. Once Andy turns the corner on a threat, he becomes my knight in shining armor. One morning I was gathering my stuff for school and I was crying, I couldn’t stand up, I was tipping over, I couldn’t breathe, and Andy said, “That’s it. We’re going to the doctor.” He called me in sick and put me in the car.
My GP looked at me and said, “We’ve ruled out every other possible explanation for this. I believe you have an anxiety disorder and we’re going to have to try medication.” And so I entered the wild world of psychopharmaceuticals. Celexa gave me a rash, Paxil turned me into a libido-less concrete block, and then we tried Effexor.
As Asperger’s and Anxiety were entering the tenth round, in swooped Effexor Woman to halt the fight. This medicine plus weekly counseling for four months turned me into a person I had never been. Effexor Woman was assertive, she was confident, she was fearless, she used positive dialogue, and she fought off panic attacks with one hand. She had reasonable expectations of herself, she exercised, she tolerated neither guilt nor obsessive scary thoughts.
She was actually quite frightening for everyone until she got her sea legs.
I can honestly say that with the use of a very low dose SSRI, I finally feel “normal.” I can feel myself even now in situations where I used to become anxious, waiting for the stab in the stomach, the sting of adrenaline, the racing thoughts. And they just don’t happen. Situations that would have driven me under the table previously elicit only the appropriate amount of apprehension, not debilitating fear.
Finally finding the “Anxiety Disorder” name for my behaviors allowed me to find the right antidote to help me out. Now that Effexor Woman is on my team, I can see what is happening with clarity. I took my fingers out of my ears and opened my eyes and threw Anxiety Disorder out of our bed for good. In the ring with Asperger’s, EW just smiles and steps back from the thrown punches. Let those symptoms do as they will. They won’t bother me.
According to the Harvard Women’s Health Journal, “Anxiety is a reaction to stress that has both psychological and physical features. The feeling is thought to arise in the amygdala, a brain region that governs many intense emotional responses.” So Andy and I have that in common: we both are affected by atypical amygdala activity. The big difference seems to be that mine is chemical and his is structural.
Now that we know Andy’s issue, I want to have some nice superhero help him out as well. I am completely on the side of the Asperger’s Rights Groups who decry people’s efforts to change the neurologically different. I have a treatable neurochemical imbalance; Andy has a neurological difference and that makes him who he is. (I want a T-shirt that says “I’m with the Aspie.”)
But that neurological difference does often distress him and makes him anxious and ineffective. It makes him do things he later feels really bad about. (Andy’s alternate Asperger’s nickname “Caspar Weinberger Syndrome” comes to mind.) Andy actually guards his hyper-alertness, saying that fear is what allows survival, of an animal or a farm. But excessive fear, as I well know, can actually cause imprecise thinking and fruitless commotion when it is extreme.
In her book Thinking in Pictures, Temple Grandin relates that she began taking anti-depressants when her panic attacks began to seriously affect her ability to function but that she has had to adjust and experiment with the combination that works best. She admits that “Manipulating my biochemistry has not made me a completely different person but it has been somewhat unsettling to my idea of who and what I am to be able to adjust my emotions as if I were tuning up a car.”
I admit to the same discomfort. I have read the scientific descriptions of what Effexor does in my brain and I question whether I am messing with the person God genetically made me to be. However, when I missed a dose lately, and found myself unable to attend to my students or my children, I decided this was not a way God wanted me to be.
Every time I talk to my doctor about lowering my dose or going off the medicine completely, she says, “Has your lifestyle changed?” “No.” “Then I would not go off the medicine.” She continues, “You might have to accept that this is a lifelong condition, like diabetes.” In that light, I would not deprive myself of insulin if I were diabetic. I would not stop taking my allergy medication. Why is manipulation of brain biochemistry any different?
However, Asperger Syndrome and autism are different. The actual neurons – the wiring – is different, not the chemical cocktail that’s flowing around them. My drugs alter the amount of serotonin and nor-epinephrine available in my brain. This can be changed. Asperger Syndrome, as far as the biologists can tell, is a condition of the neurons themselves.
This is why Aspies for Freedom oppose the idea of an autism “cure.” Their website states, “Part of the problem with the “autism as tragedy” point of view is that it carries with it the idea that a person is somehow separable from autism, and that there is a “normal” person trapped “behind” the autism. Being autistic is something that influences every single element of who a person is – from the interests we have, the ethical systems we use, the way we view the world, and the way we live our lives. As such, autism is a part of who we are. To “cure” someone of autism would be to take away the person they are, and replace them with someone else … Aspies For Freedom opposes the idea of an autism “cure”, as a real cure would be unethical, and the current myth of the cure is harmful.”
However, those with Asperger Syndrome and autism DO acknowledge the benefits of treating the symptoms of Asperger’s and autism. One woman, who takes five different pills to manage an array of tics and panic attacks, says, “Of course I’d like to be able to live a happy life without medications. I will have to find a time when I have the freedom to risk inconvenient behavior changes, and the courage to risk the emotional trauma that would go with those changes … I might do it, someday, but for now my pills are too helpful to give up.
I don’t know if medication is an appropriate option for Andy, but Effexor Woman is ready and willing to fly him down to the doctor to find out. There are days when Andy’s stress is minimal and mine is chemically controlled and we interact like two relatively normal folks instead of puppets handled by battling neurological conditions.
The person I am with unmedicated Anxiety Disorder is not me, and now that she has been banished from the bed, my real me can take her place. I am not looking to change Andy, but I know that even he dislikes the power that the constant fight-flight response has over him and the exhaustion it causes.
This is a territory into which we are treading lightly. Andy was misdiagnosed with ADHD as a kid and was on Ritalin for many years. He still bridles at the stigma of that time period. He also fears that quelling his anxiety would make him less able to manage the farm. He says time and again that fear is what propels him to the barn in the middle of the night to save a $500 newborn calf.
But when I am dealing with a Tasmanian attack and stuff is flying, I rage silently, “Sure, it’s OK for ME to take anti-anxiety drugs but not for YOU.” But this is indeed dangerous territory. Asperger Syndrome, with the grace of the unconscious, provide its own self-medications in stimming and Special Interests.
Looking at other elements of God’s creation, we allow the wind to be both a gentle breeze and a raging hurricane. Precipitation is both a gentle rain and a torrential monsoon. Jesus himself both sat little children on his lap and flipped tables.
I don’t know. I admit this is a tough one, another facet that is going to require further study, talking with experts, discussions, soul-searching and love. I know that my own capacities for love and compassion are greatly diminished by my untreated Anxiety Disorder. Maybe in ten years or after retirement or when some big financial ship comes in, the circumstances of my life will stop triggering so many anxiety responses. But right now, I am needed and I can’t be dysfunctional. As they tell mothers on airplanes, affix your own air mask first so that you can then assist others.
For right now, my disorder is better understood and more easily managed, and I am relatively comfortable with the treatment. Asperger’s information is still forth-coming, and it is more difficult to find local, well-informed counselors and doctors. So for the time being, I’ll wear my air mask and be ready to help Andy if and when that help is indicated. In the meantime, at least we know what we’re dealing with on Andy’s side of the ring, and we can use the techniques and management tools that are known. It’s already making a difference.
Wavey and Quoyle finally do banish the demon lovers from their bed. They find strength in each other and also in the quiet comfort and ease of each other’s loyalty. In Newfoundland and in this woman, Quoyle finds that the most profound of miracles – those massive seismic shifts in the human heart – are quite possible. The book ends like this: “Water may be older than light, diamonds crack in hot goat’s blood, mountaintops give off cold fire, forests appear in mid-ocean, it may happen that a crab is caught with the shadow of a hand on its back, that the wind be imprisoned in a bit of knotted string. And it may be that love sometimes occurs without pain or misery.”
Yes, I think so too.
My last year at Amherst, I lucked into the most amazing housing situation. The Dean of Students and his wife had bought a new home off-campus but still had one semester left in their college rental house. They were looking for some students to sub-let it, and because I had worked for the dean two semesters, he asked me if I would like to gather some friends together to live there. Ummmm, yes.
Andy and I were already engaged, though with two semesters of college left, I felt this was kind of an “intentionality” type of engagement rather than a real one (no ring, after all). So Andy was over at our sub-let house a lot.
I remember one specific day when I was the only one home and he stopped by. We young co-eds had moved the kitchen table into the room with the fireplace and the huge window that overlooked the back yard, and that’s where Andy and I were sitting, eating some lunch together.
I don’t remember why, but Andy launched into a little chant to amuse me. It went like this:
“Vlädafeesh-feesh vee doe foe.” Beat. “Vlädafeesh-feesh vee doe.” Beat. “Vlädafeesh-feesh vee doe foe video foe. Foe.”
For some reason this tickled me beyond reason. Perhaps it was the accumulated stress of the semester. Perhaps it was young love. So he chanted it again:
“Vlädafeesh-feesh vee doe foe.” Beat. “Vlädafeesh-feesh vee doe.” Beat. “Vlädafeesh- feesh vee doe foe video foe. Foe.”
Andy had this mock concentrated look on his face and had pitched his voice low as if he were some sort of Nordic shaman performing a ritual to bring back the sun. I laughed and laughed.
Then he transitioned into another oddly amusing persona, and began proclaiming, “For heaffen’s sake, Mrs. Heiffershmorsh” with his lips compressed and looking in an agitated way left and right. I laughed so hard I nearly peed my pants and tears were rolling down my cheeks.
I wonder now as I wondered then, how did he come up with that? The sounds are certainly Scandinavian, not surprising considering Andy’s Swedish background and growing up around his Mormor. But the beat, the facial expression, the very fact that a 29-year-old man would be performing such ditties, where does that come from?
Maybe my Amherst years had wrung some of the child out of me, or maybe my literary linguistic tendencies bent me more toward reciting “Whan that aprill with his shoures soote/The droghte of march hath perced to the roote” in my best Middle English, but I could never have composed, on the spot, the “Vlädafeesh” chant.
This is one of the earliest memories I have of Andy’s wonderful childlike side. Apparently this is a Bartlett trait, not specifically Asperger’s, because I have heard the tales of Andy’s grandmother’s similar whimsical sense of humor.
For example, as Andy’s dad tells it, one day she and her husband (my father-in-law’s dad) came home from the grocery store and five lemons they had bought rolled out of their bag, unbeknownst to the grandfolks. They thought they had either left the lemons at the store or misplaced the bag the lemons were in. A week or so later they found the lemons, which had rolled behind a door in the kitchen. They were now desiccated and rattling like little maracas.
Instead of being disposed of, the lemons were given the status of “rogue citrus” and allowed — for years — to roll around and stay hidden in various places in the house: under the dining room hutch, behind an umbrella in the entrance hall. They would periodically roll out when no one was looking and hide themselves elsewhere. Apparently these lemons remained on the lam until Andy’s grandfather died and his grandmother sold the house and moved to a nursing facility, by which point they had finally been forgotten.
Apparently, this childlike trait is genetic. When we were up at the Bartlett camp in the Berkshires recently, Andy filled me in about the photos in the loft of the A-frame, which I had always assumed were purchased. In the photos, a small group of stuffed bears and a giraffe are on a boat floating on a lake. I thought these were by the same photographer who created The Lonely Doll, but no. On the wall between these two photos was the actual marine-canvas boat from the photo, resting on a wooden platform made especially for it. Andy told me that his Dad had crafted the boat, staged the voyage, photographed it, and then told Andy and his brother and sister stories about the fanciful expedition.
I can visualize this because I know Andy’s dad. He can go from the driest, most technical explanation of methillin-resistant staph aureus infections to the most child-like of tale. He just loves the 1931 picture book Joe Buys Nails, which is only tangentially about young Joe’s time at the hardware store and predominantly about his adventures through the woods en route.
And then there’s Andy. Most of the time he is quite technical and precise. Asked by one of our boys what a bruise is, he will respond with “Well, a contusion against the bone will dissipate blood under the epidermis until the lymphatic fluid dissolves it.” All three boys turn their heads to me like the three little kittens for the translation. “A bruise is blood that oozed out of a vein when it broke and then got stuck under your skin.”
“Well,” Andy says, “that’s not precisely what happens –“
At this point I hold up my hand and say, “Close enough until they get to med school.”
“I’m just trying to be accurate.”
But then there are things like Vladafeesh and Mrs. Heiffershmorsh, and when Andy invites the boys to a foam noodle battle in the pool, he seems to be the one having the most fun. Apparently, the same neurological difference that leads to anxiety and temper tantrums – the immature amygdala – also leads to the other child-like emotions: joy, whimsy, and playfulness.
Einstein himself attributed his discovery of the theory of relativity to his delayed emotional development. He once said, “The normal adult never bothers his head about space-time problems … I, on the contrary, developed so slowly that I only began to wonder about space and time when I was already grown up. In consequence I probed deeper into the problem than an ordinary child would have done.” There is that famous photograph of Einstein sticking out his tongue or the one where he is riding his bicycle with a huge grin. The downside to this was that he sometimes had to be fed and told when to go to sleep and protected from exploitative people.
Einstein was also a ditty writer, penning for example a little poem about Captain Carefree. This poem reminds me of a song from Andy’s childhood that he sometimes sings: “Ahoy! Ahoy! I’m captain of my ship. My name is Captain Salty and I live on the sea.” He unfailingly intones this chantey in a bold husky voice, standing feet spread with one fist on his chest, grasping the lapel of his pretend captain’s coat and looking to the far horizon, and he unfailingly makes me laugh.
Of course, as Andy is the first to admit, he might have Asperger’s but he is “no Einstein,” and luckily for me that means he is not so childlike that he needs me to feed him or tuck him in. Well, not often. But he is childlike enough to keep life fresh for me, the boring 40-something NT with her mature and aging brain. He does funny little dances in the kitchen and play Legos with the boys and sings silly songs. But then he’ll turn around and analyze the Iraqi economy or calculate our break-even price on a 50-cow expansion or rewire the electrical service to the house.
Appreciating this polarity in an Aspergian is an acquired taste. The rare combination of childlike whimsy and sophisticated intellectual analysis is like one of those sense experiences that contrasts sweet with bitter or sour with salty or hot with cold. It’s like amaretto cheesecake with espresso or sweet and sour chicken. Or listening to the various movements of Vivaldi’s Four Seasons. Such contrasts can be just exquisite, like leaping from a sauna out into the snow.
Of course the emotional rollercoaster can be taxing, and like a little overwhelmed child, Andy does frequently fall into bed exhausted by day’s end. And so do I, after being hurled from side-splitting laughter at one of his silly personas to dealing with his explosive rage over some lack of precision or efficiency.
The elderly Einstein had that crazy white hair and that impish grin. I can imagine Andy looking very similar in old age. His hair will eventually turn white, though his childlikeness seems to have extrapolated itself into keeping his hair from graying or falling out. And I know that he will be whimsical and beloved of our someday grandchildren.
We all know that the mysteries of the kingdom are given to little children and hidden from the wise. There is something about the wide-open nature of childlike perception and wonder and contemplation that allows children more direct access to the rarer dimension of experience – call it relativity, call it the Kingdom of Heaven, call it what you will. Andy certainly takes great joy in nature and experiences it in a way far beyond my grasp, while my aged amygdala often feels jaded and just sees mud and leaves. He is much more pure of heart than I am in this way.
It seems to be part of the human experience to return to our child self before death, but the Aspie gets to retain that delight and awe throughout life. Eventually, I’ll be developmentally back there with him, but in the meantime, Andy tries valiantly to take me along for the ride. He often has to pull me off my middle-aged lawn chair and back into the sandbox. But truthfully, once you’re back there, it is a lot of fun.
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