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.