The Nether of My Knees

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B. Russell Mills-Campisi

 

Writer’s Comment:  In the first two weeks of my final quarter at UC Davis I image_mini (7).jpgwas an uninspired science major hoping to get by with little to no work in my required upper division writing course.  Had I any other teacher than Mrs. Walker that might have been the case.  Through her charm and easy going style I became convinced that writing done with passion, and most especially anger, could be a well lived process.  I became so consumed that Mrs. Walker wondered if my work in other classes might be hindered.  It was much the opposite.  I was always working, and that overflowed into all other aspects of my academic life, making my final quarter both an inspiration and a success.  As for my paper, I did eight rewrites, triple-digit-reads, and my edit checks were done in a dizzying array of papers strewn about the floor, on walls, in cars, sitting up late, early, not sitting at all, in the back yard, in the house, and on the lawn.  As the final assignment of my undergraduate career, it could not have been better.  I would like to extend a long thank you to Mrs. Walker, for all of her time spent with me and my hardened head.

—Russell Mills-Campisi

 

Instructor’s Comment:  Russell Mills-Campisi confronted a technical challenge in UWP 104C (Journalism) when he set out to write a feature article about his brief but life-changing experience as a young patient diagnosed with manic-depressive illness. An early draft vividly recreated his feelings and perceptions around the time of his diagnosis.  It was already a powerful story, but Russell wasn’t satisfied. The teenage persona of the narrator excluded his present perspective, informed by scholarship in Neurobiology, Physiology, and Behavior, his major field.  In the end, he discovered how to create a more supple voice and a more sophisticated structure that accommodated both perspectives, past and present, without compromising either the freshness of his narrative or the power of his argument.

—Jayne Walker, University Writing Program

 

 
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How far away are your knees?  Mine were too far.  How about the soap?  I couldn’t reach it.

With my chin on my chest I looked at my knees, wondering at my inability to wash them.  How could they be too far away?  My shoulders were pulled forward, my neck stiff and angled downward, my breathing a slow, tired, in and out.  I could see for the first time that my life wasn’t as I remembered it.  My laid back nature had moved to lethargy, my haphazard style had become more unkempt and slovenly.  The world had not moved my knees too far away.  I had.  There was something wrong with me.

Getting out of the shower, I knew I had to tell someone.

At the time, I was two years removed from living with my mother.  I had yet to apply to college, and I was working nowhere important, doing nothing worthwhile. At seventeen my mother had asked me to leave. We weren’t on speaking terms. Whenever we tried, we yelled.

Before I left, my mother took me to a therapist who specialized in troubled youths.  It didn’t last very long.  I was too angry, too jaded to commiserate over my feelings.  Two years later, knowing that I was in a bad state, but unsure who to call, I called him.

He had a beard, looked friendly, and was just shy of 50.  Shades of brown ran along the walls and floor of his office.  He came highly recommended, as one of the best adolescent specialists in Berkeley.

“Let’s talk about your knees.” No matter what he said, addressing my problem aloud was painful.  I came to him embarrassed that I had a problem that didn’t seem real; now I was embarrassed that he would see and pass judgment. “What’s to tell? They’re good looking knees.”

It’s hard not to be distant and quick when matters are heavy.  He tried another, more direct approach.  “So what do you think is wrong?”  Unable to stop myself, I responded, “If I knew that, I wouldn’t be here.” 

Our sessions continued on like this, a back and forth without any assurance of progress.  I wondered what progress would even look like.  Trying to understand, I asked myself, am I feeling better? Am I sleeping more or less?  Am I more normal?

Success is hard to measure when dealing with an ailment of the mind.  When you go to a car mechanic with a problem, you get dates, prices, and a list of all the parts that have to be replaced.  Everything is written up and printed out for easy reading.  Therapy is much the opposite.  The two of you have to agree to work with one another.  You set up weekly or bi-weekly meetings, with no deadlines, for fear of inviting failure.

After the introductions are over, the patient and the therapist begin searching for a “label.”  A label, like depression or schizophrenia, has a corresponding treatment, and so is an important part of the therapeutic process.

Unlike doctors of medicine, who can order up tests with indicators that reliably show if someone has a disease, therapists lack diagnostic tools that rigorously show what the patient is suffering from. They have to depend on the patient’s qualitative assessments of feelings, using careful questioning to figure out what a patient is doing that may be symptomatic of a mental illness.

My therapist asked about my sleeping patterns, and how active I was, but mostly he wanted me to talk about my daily life.  My friends were our number one topic of discussion. We never addressed the big issues.  My parents were rarely if ever talked about.  Relations with my brother, cousins, uncles and aunts appeared to be unimportant to his investigation of my ailment.

In retrospect, that should have been a flare in the sky, warning me that something was awry.  If a therapist’s evaluation is limited to qualitative descriptions, then the topics addressed ought to be the cornerstones of a person’s life.  If these are not addressed, the therapist is drawing conclusions about a patient’s mental state from superficial topics far removed from the problem at hand.

Admittedly, my therapist wasn’t alone in that room.  I was never very forthcoming about my family.  But I was in no state to address what we needed to do with me. I was too young to know what was good for me. I didn’t know what questions to ask, or even where to start.   When I showed up to his office and sat down on his couch, I figured he had a plan.  He HAD to have a plan, because I certainly didn’t. 

Whatever his expectations, his goal was a diagnostic label.  Without one, any symptom can be an indicator for a variety of illnesses, specific to the brain or another part of the body.  Treating only a singular symptom could mean delaying the appropriate treatment for the undiagnosed illness.  For example, a person who has been diagnosed with severe depression is given antidepressants.  But if that individual were instead to have manic-depressive illness, antidepressants would cause them to have powerful manic episodes, which would be dangerous to their health and the health of other people.

After a few weeks we seemed no closer to a diagnosis, and I began to wonder at how long this was going to take.  It became apparent that the search for a diagnosis has no finish line cleanly marked in yellow ribbon.   The process can take a day or it can take a year.           

Waiting, my knees grew grungier.  The week it took to grow my 4 o’clock shadow ended without a clean shave, and by month’s passing my face was covered in a beard of brown patches, red stripes, and speckled yellows. The cleanliness of my jaw was as impossible a wall to climb as the cleanliness of my knees. 

I hadn’t realized that the waiting would itself be so taxing.  I wanted so badly to have an answer, anything at all would do.  Until I got one, I was incapable of taking care of myself properly.

At some point I started attacking myself with “whys.”  It didn’t matter where I was, sitting in a restaurant, a park, or in the waiting room of my therapist’s office, my mind would be bursting with questions.  Why am I in this office?  How could things have gotten so bad?  Why am I doing this to myself?  It was an out of body experience.   I watched myself fail at each internal command to do better, to get better, to stop defeating myself.  I would be telling myself to do one thing, like be happy, but instead my body would lie down. 

I had no control.  I was stumped by an inability to know myself.  It was the awkward feeling of being hung up on, except that I was hanging up on myself.

 

Approximately two months after our first meeting my therapist decided I needed an IQ test.  I wanted to ask him why, but I didn’t. I only nodded bleakly.  I couldn’t help thinking, you’re here because you’re too stupid to figure this out on your own, so just do what he says and shut up about it.

On the table in front of the woman who was to give me my IQ test was an array of tools, tricks, and puzzles. Blocks with different colorings and shapes, word lists, numbers I was supposed to recall, forwards and backwards.  Blot tests upon blot tests were stacked high, all there for my interpretation.

Apparently I was here to play games.

The words came first.  I sat back in my chair and tried to define all oncomers.  If I didn’t know the definitions, I made stuff up, I winged it.  When that was done, we tried blocks.  I was supposed to arrange them in an ordered pattern.  She’d set up everything, her watch ready, and in a blur of brilliance I was done. 

My blocking was staggering.

Hours of this aggravated my adolescent mind. The tests seemed infantile, like anyone could have come up with them.

The blot tests only increased my aggravation.  She wanted stories.  What did I see?  I made up fantastical imagery.  She wanted more.  I kept going on about knights, bats, flying leprechauns and anything else that was beyond the beyond.

The idea that any of this would have meaning made me angry. I started thinking that all these tests had less to do with my IQ than with my money. Nothing comes cheap in this business.  Sessions with my therapist were $150.  The IQ test was going to take multiple sessions, and in the end cost over a thousand dollars.  I didn’t have the money.   My mother, who had been supportive throughout, footed the bill.

When the IQ specialist presented me with two exams of more than 700 questions, I told her I’d do them if I could take them home.  I took them home, but never did them.  I found the whole experience ludicrous.

A few weeks later, I came in for my official score, and her opinion.

She looked forlorn when she gave me the news—a very high score.  I of course was ecstatic.  My ego was being boosted, and I immediately had the thought that the experience hadn’t been so bad after all.  But she didn’t reciprocate with a smile to match my own.  I could have sworn she was trying to console me.

 

When my therapist and I met to discuss what came next, he presented me with a diagnosis: Manic-Depressive Illness.  What the IQ test gave him that he didn’t have before, I could only guess.  I never asked, and he never brought it up.

Oddly, I was relieved to have my diagnosis.  When you hit rock bottom,  you are too broken up to think, “This is weird.” I couldn’t muster up the courage to ask why I had been diagnosed with manic-depressive illness.  I just sat there, stunned, yet strangely content.

Giving a patient with an unknown ailment a label is an act of comfort.  The patient finally has something to grasp. 

My label made me happy to have something to treat.  It was empowering.  It made my therapist happy because he felt like he had done his job.  It made my friends happy because their friend was in need of their empathy and understanding.  It was a comfort to my mother because she felt that she had done something right on behalf of her son—she had found someone to diagnose the problem, and she spent money she didn’t have getting it.

Yet after I was diagnosed with this mental disease, my sense of self started eroding.  Initially there was a feeling of loss:  I was gone, as if I had never been.

As children, my friends were identified by their hair, how tall they were, and whether their lunch had anything worth trading.  What made them David, Joel, or Isaac was a combination of superficial features sewn together during recess and birthdays.  As they grew older, Joel stopped being the short, sloppy kid and became the tall, mature adult, with a passion for cooking.  The change can appear strange, but one accepts it.  In no time it becomes normal.

I was suffering from manic-depressive illness—it became normal.  The I who had been free from mental illness stopped existing.  I was now diseased—same friends, new role, different lunch.

 

Looking for clarity, I found Dr. Kay Redfield Jamison, a renowned manic-depressive illness specialist who also suffers from the disease.  Her work includes an Unquiet Mind, a personal look at her own life, and her coming to terms with the disease.  She has also co-authored Manic-Depressive Illness, a text for psychiatrists.  I was in need of someone who could guide me.  I was in need of someone who had made it. 

She describes manic-depressive illness as a shifting of moods.  The shifting is predictable.  There is mild euphoria.  A jump of ideas.  Emotions are tidal, and during mania they swell.   Nights shorten.  Deep thoughts are in everything.  Every scrap of paper will be written on—both sides, in erratic script.  The house becomes cluttered, as chores stop being done, and purchases stack up.  Stuffed foxes, a horse and a newly rented stall, hundreds of plants, books, magazines, cookware. 

Either the mania continues and a sort of panic fills the void; the mind creates illusions that encompass all the senses and buttress your life, replacing everything that you knew . . .

Or you begin the long fall.

In days you go from the highest highs to the deepest chasm. 

The world darkens.  Getting out of bed is a trial.  Work can wait, the flood of writing stops, the bills aren’t being paid, many of which you don’t even know you have.

Manic-depressive illness comes and goes, but it does so regularly.  The cycle is different for each person. Manic episodes can last weeks, and sometimes months.  Depression typically comes immediately after, though it can lay dormant in people for years.  The pattern—mania, depression, equilibrium—is necessary for a person to be diagnosed with manic-depressive illness.

The most traumatic time is when the cycle comes back to equilibrium and the patient first surveys the damage. The debt can be enormous.   Friends are gone, and family is in hiding.  This is when a person suffering from manic-depressive illness is most likely to commit suicide.  Not when the world is a strange illusory place, but when one is sane and settled, and can honestly say, “never again.”

Reading Jamison’s work, I was afraid.  The behavior seemed extreme.  I didn’t have the debt, the stuffed animals, the writing on the walls.  I slept more than she did during her episodes, I drank very little, and the worst purchase I’d made in years had been a pair of suede-jean pants that were worn only in select venues.  I wasn’t sure if I really had manic-depressive illness, but I had nothing else, so I convinced myself that I’d give being manic-depressive a try.

 

A therapist can’t prescribe drugs, so my therapist sent me to a psychiatrist, who was qualified to prescribe medication for my illness. 

I was too young at the time to question why my therapist could diagnose me but needed someone else to give the “cure.”   It’s only now, years later, that I see the problem with such an arrangement.  If therapists can’t prescribe drugs, what else can’t they do?  Therein lies a huge issue.  The physiology behind behavioral issues is outside their purview.  The advantage of teaming up with a psychiatrist is lost when the psychiatrist isn’t prescribing tests, or diagnosing at all, but is instead acting only as a vendor.  Their partnership was only one of convenience.  Convenience for them, not for me.

I met briefly with my psychiatrist, and he recommended that we meet every couple of months for fifteen minute checkups.  That was it, along with my prescription of Zyprexa. 

Zyprexa was relatively new at the time.  It is a powerful anti-psychotic.  Anti-psychotic is a catchall for a multitude of therapies this drug can give.  It helps with depression, schizophrenia, anxiety, and other maladies of the brain.  The first wonder drug of the 21st century, its usage was immediate, and widespread, before any long term studies had been done.   In 2005 Eli Lilly Corporation, the manufacturer of Zyprexa, settled with approximately 8,000 plaintiffs for nearly 700 million dollars, because the drug induces hyperglycemia.  As early as 2001 the FDA had been investigating serious side effects of the drug, which also included tardive dyskinesia, apathy, permanent feelings of hunger, and weight gain. On December 17, 2006, The New York Times published an article showing that Lilly had been suppressing knowledge of severe health risks associated with Zyprexa for over a decade.  Neither Lilly nor my psychiatrist had informed me of any potential harm. 

For comparison, Lithium, the first drug to effectively treat manic-depressive illness, has been around for decades, has been studied at length, and is well understood.  My psychiatrist never mentioned it as a real possibility.

 

I still wasn’t sure how I had been diagnosed with manic-depressive illness, but I knew that everyone thought that Zyprexa would somehow make things better. They hoped that with enough medication I might live up to the potential indicated by my IQ test. My apparent lack of direction or intention to expand my horizons and my general complacency were all seen as symptoms of my illness.

I knew from reading Dr. Jamison’s Touched by Fire that many great minds had been shaped by the disease I now possessed.  With the announcement of the diagnosis, I entered into the company of Van Gogh, the Tennysons, and Lord Byron.  That I would have to be medicated struck me as a sign of my ability—a crown, crooked and teetering.

As soon as I could I took my first pill and settled in. 

I was hoping for quick relief, but prescription drugs for mental illnesses don’t work that way.  After two weeks the Zyprexa started doing something, but nothing like I had hoped: Light broke up into dim shades, no swirls, no intensity.  Outside was a rainbow of grays.

Panic would sometimes well up.  Am I still me?  Keeping it together felt like crawling up a greased pole.  At the top was safety, but holding on was a slippery mess. 

My shoulders slumped further forward, and my eyes felt sticky and slow.  Memories began fading,  and life became a dramatized slow motion picture with few words or sounds.

I took the loss of life’s luster as a badge of honor.  As I had accepted my diagnosis, so I embraced my potential as well.

The fading of my memories was especially bad.  Emotion connects all the important events of life, organizing them in memory.  The longer I was on Zyprexa, the more pronounced the loss of connection I felt with my past, and slowly the emotion of my life seemed to dissolve away.

Something else was lost too.  I’m a monologist.  Every answer is a long one.  Every conversation is a meal.  There is a starter, the main course, dessert and coffee.  My words are rapid, my diction grand, wide, wild, depthy, daunting, and delirious, and if it were transcribed to a page, you would see no periods, just an endless supply of commas, semicolons, and exclamation marks. After being medicated, my effusion became a tidy stream, with periods of little to no flow.

People thought I was better.  I slept more, and talked less. My argumentative streak was no streak at all. I wasn’t interrupting anyone.  I was docile, I was desirable for my complacency.

Somehow my disease, like a black hole, sucked in surrounding character traits that people found less than desirable.  I’m opinionated, strong willed, aggressive, and ornery.  Those traits were lumped in with my disease, and had to be treated in much the same manner.  They had to be cured.

On Zyprexa I stopped doing the things I had always done, the things that made me ME.  I became someone else, and no one came looking for the young man who had disappeared.

 

 

 

When I had my first (and only) psychotic break on the drug,  I was lying down.  My hands gripped the bedpost hard enough to make my joints hurt.  My body was shivering violently, sending my rattling bed against the wall.  Bang!Bang… Bang!Bang… 

A psychotic break is a lucid act.  You know what is wrong.  Everything.  Everything is wrong, everything is connected in its wrongness. 

I don’t remember the day, but it was dark out.  I was in my old room at my mother’s, and I was sweating profusely.  My heart was in my ears, and my feet were clammy and cramped.

I was losing my mind, and within the maelstrom of panic, a piece of me felt calm at its coming, wondering what had taken so long.

 

At my next session I told my therapist what had happened.  He said that was normal for someone in my position. He explained that the cause of the break was either the disease or the cure.  We were going to have to wait and see. 

“Why?”

“Why what?”

“Why do we have to wait and see?  It already happened.  If we want to know what happened, we have to either take me off the drugs or assume it has to be the disease.” 

Why was I telling the therapist what he should already know?

The conversation was making me angry, and without letting him answer I began asking him questions in an accusatory manner.

“How can you be sure I even have manic-depressive illness?  I want to know what I’ve done to get this diagnosis!?”

With a straight face and calm voice, he told me that people of uncommon intelligence are more likely to suffer from manic-depressive illness.

So that explained the IQ test.

“But that isn’t the only thing, I hope . . .?”

“Certainly not . . . “

“Then certainly what?” 

“Well . . . . Problematically, you never exhibited the normal signs of depression, which complicated things.”

“Normal?  You mean I wasn’t showing signs for it?”

“You were depressed.  But not clinically.”

Which meant I was having a normal response to a bad situation.  Clinical depression is an extreme form of depression, and only therapy and medication can halt its progress.

“Was I ever manic?”

“You had erratic behavior, which we thought might be a precursor to bigger things.”

“So I was never manic.  I was never severely depressed, only. . . ”

Normal. 

That was my watershed.  Hackneyed and withered, but there it was.

 

Even though it seemed obvious that something had gone wrong with my diagnosis, I wasn’t quick to let go of it.  I had grown attached to the new normalcy.

I had been seduced by the genius associated with manic-depressive illness.  History’s troubled artists are an intriguing lot.  Their art is profound, their ability to communicate the world in unique ways is powerful and inspiring.  The prospect that I might somehow be like them was something I wasn’t sure I wanted to give up.

I had to make a decision.  Did I want the disease? Or did I want the truth?  For weeks I had flip-flopped from thinking that I was suffering from manic-depressive illness to thinking I was suffering from inept healthcare.  I needed to choose a course and stick to it.

My analysis was short: 

     1) My therapist had a Ph.D. in speech.

     2) My psychiatrist had done nothing more than distribute drugs.  He played only a minor role in evaluating my condition, or questioning my diagnosis.

     3) I never exhibited the necessary symptoms to be diagnosed as manic-depressive.

I had given three months to being manic-depressive.  I was terrible at it.  I never was manic, I was never very depressed, and my supposed extreme behavior was having a hard time competing with Van Gogh’s ear removal, or Lord Byron’s miniature armadas, with hundreds of little boats acting out the great oceanic battles, his servants rushing to make history, splashing about in his lake.

Moving away from acceptance of my diagnosis was like getting off the couch after watching weeks of reruns.  My muscles were sore, my clothes were dirty, and my mind ached with questions.

Why was a therapist with a Ph.D. in speech diagnosing a mental disorder—at all?  Why wasn’t the psychiatrist taking more time to evaluate me?  What did the IQ test say about me other than that I had potential?

Why couldn’t anyone explain these things to me?

 

In retrospect, I think I could have found help with my old therapist if I’d brought our sessions back to what mattered – family, school, and the ever-present “potential.”  I had an unhappy family life.   I never applied to college, and I felt like I was wasting away in a podunk town, working at an upscale Chucky Cheese.

But a bad diagnosis begs for accountability.  To this day, I have no idea what the therapist must have seen to make the decisions he did.     

Without consulting him, I went off the medication.  There was no flush of drugs, no quick and triumphant end.   Going off prescription drugs takes time.  If it’s done too quickly, withdrawal symptoms can set in and make you miserable.  I cut the dose down by halves every two weeks for a total of six weeks.

At my last meeting with my psychiatrist, I told him that I was going off Zyprexa.  He said, “Oh.”  There was no warning, no discussion about what was good for me. 

I told him that he reminded me of a vending machine.  All I had to do was show up, pay, and walk away with my product.  He gave me drugs with little understanding of who I was and where I was going.  If he had felt that my therapist’s diagnosis was right, he should have at least discussed that much with me. 

He wished me luck instead. 

It’s been more than half a decade since this all transpired.  I’m graduating with a degree in Neurobiology, Physiology, and Behavior from the University of California, Davis.  Why I chose the major seems self-evident now.  I wanted control, and I needed answers. 

I’m happy to say that within months of going off of Zyprexa the rainbow of grays was replaced with another, more vibrant one.