The Demon Box

A couple of weeks ago, I got an email from an unknown man in Canada. This fellow had bumped into a copy of a newsletter I had written for NAMI (the National Alliance on Mental Illness) in 2009 called “Suicide is an Illness.” (How he obtained a copy, I will never know.) In the article, I honored an old friend of mine from my undergraduate years at UCSD, a man named T.C., who was named outright in the original article. It turned out that the Canadian fellow, D., was roommates with T.C. in graduate school. D. spoke of T.C. in glowing and loving terms and brought back a host of dormant emotions.

To me, T.C. was all that and then some. I met him in my Latin class in 1990; he was the class superstar. His genius was apparent to everyone as the Latin phrases would slip effortlessly off of his tongue, and his translations were as fluent as English.

His other area of appeal besides his Latin acumen: he was an asshole. His ego could fill the Coliseum itself. He had something to say about everything, pop culture, classical philosophy, music, sexuality, politics, social dynamics, etc. No topic was too obscure for him to weigh in and slaughter any opposition.

He was also striking. Tall, broad shouldered, with a Roman nose and piercing blue eyes.

Then there was his sinister laugh. It often reverberated down the hallway in front of Latin class, authoritative and mocking.

I resented him at the outset, and then my distaste turned to fascination, and my fascination to infatuation, and my infatuation to love.

T.C. and I became fast friends. I’m sure it had something to do with my hero-worshipping ways, but it I’m sure I held some sort of attraction for him. At that time I needed saving, and I don’t think he minded being a savior. He also liked to have someone listen to him talk, read his poetry, and hang on his every word. We spent a lot of time together on the Revelle College campus, hanging out at a stone sculpture called Stonehenge talking until the early morning hours.

T.C. excelled academically. He would take 20-24 units a quarter and get straight A’s. He was in the hypomanic phase of his bipolar illness much of the time and was incredibly high functioning in the academic arena.

I would often ask T.C. about the bipolar condition. He once referred to a metaphor by Ken Kesey who said that the human psyche could be called a Demon Box. It was designed to filter information in such a way that it kept certain things in and certain things out. In a person with bipolar disorder, this filtration system, this Demon Box, was broken, and the individual sufferer could not separate positive and negative information in a functional way. Bipolar people suffered from an influx of demons. T.C. elaborated that once these demons came into play, that they would interact with one another, making the condition even worse. The challenge, he said, was to kill off the demons before they killed you. This metaphor struck a chord; I always appreciated T.C.’s imaginative way of conceptualizing the world.

Eventually, T.C. got a full scholarship to Stanford for a PhD program in classical philosophy.

Our lives diverged, although I would see T.C. when he came home to LA, where we were from. Incidentally, we grew up 2 miles from one another, so his parent’s house was a stone’s throw from my mother’s.

T.C. did well at Stanford at first, and then over a period of years, I noticed that his mind was beginning to fray. Our phone conversations were increasingly alarming. The philosophizing had turned to ranting, and his narcissism ran high. He was becoming paranoid and delusional. The demons were coming to roost, and he was powerless to manage them.

After a dramatic drop out from Stanford, he was moved to his parent’s house and made two unsuccessful suicide attempts until he succeeded on the third.

Before T.C. died, he left a box of his poetry on my mother’s doorstep with a note that he wanted me to publish his work after his death. The following piece that I share is one of his tame, introspective pieces that I feel demonstrates his alienation. He was perhaps 20 years old when he wrote it.

Sophocles

I’m tracing strange tongues
Down the page
Trains bound for the center of
Nowhere hoot in the
August air
It’s a hot, dry day
Here on the edge of the land
The theatres are crowded
With eyes seeking
A cheap vacation from the
Sun

The devil is a psychiatrist
And the city noise is
His voice
He wants to know how I feel

How do I feel?
His question coils in the void above my head

I feel like the lower
Half of an iceberg
Staring down into
Depths

I feel like a doll in a box
Hanging of the rack at the
After hours toy store

I feel like an umbrella
Discarded at the beach
Flapping in the wind at
The vacant endpoints of
A day gone by

I feel like a wheat field rolling
Before a scarecrow hung
With beads and knucklebones
That rattle when the wind
Rises

I feel like a locked
Steel file cabinet
Locked up in an
Empty office.

I feel like a fan
Rattling in a window
Above two naked
Sleepers

I have become silence
I tell the Devil
That is how I feel
I turn back to Sophocles
But he’s not there.

# # #

So, here I have discharged a tiny portion of my duty, to share T.C.’s work, as he wanted. Until now, I have kept his work in a shoebox for over ten years.

I'm still hoping to have a meaningful connection with the gentleman in Canada; his contact certainly brought up a lot of memories for me. I’m relieved that I’ve been able to air out some of my feelings, so for that I am thankful, though the process has been a painful one.

I’ve decided that if I ever have a big chunk of money when I die, I’ll have a bench at Revelle College campus, near Stonehenge, dedicated to T.C. so that generations of students can debate, and hold forth, and recite poetry, and carry on as we did.

As the treatment and awareness of mental illness improves, maybe the T.C.’s of the future can be saved from these deadly illnesses.

Sandman Keeps Calling

“Now this makes sense…” was the subject line of a recent email from my psychiatrist. How rarely am I greeted by that phrase in general, much less by the Goddess of Good Health? I was positively giddy as I clicked on the message.

This email was a reply to a long back and forth Dr. T. and I had been having over the causes/solutions to my problem of excessive fatigue. I had developed a habit of looking forward to 8:00 p.m. so that I could go to bed, and then I would wake up at 8:00 a.m., reluctant to go to work because I was so exhausted. Yes, I was clocking in 12 hours of sleep at night, not counting any naps I might sneak in during the day. And yet I dragged. And snoozed, and snoozed, and snoozed.

I have to give myself credit. For the most part, I did not interpret my excessive somnolence as a sign that 1) I was a horrible human being or that 2) I was doomed to a life within the confines of my bed. I knew—sort of—that there was something “wrong.”

I say I give myself credit. It was actually just dumb luck that I didn’t experience a hard core depression in conjunction with the fatigue. Thankfully, I didn’t interpret or experience my life as being horrible; I knew it wasn’t. I knew that T. loved me and that I had friends that loved me, and I loved them back. My family was supportive. My house was a home. I knew that my job, although not always the source of great excitement, was rewarding and dignified. I wasn’t fat. I hadn’t started smoking again. Things seemed to be going well.

Except for the fact that I spent 50% of my days asleep.

What is the use of having a good life if you’re sleeping through it? As I said, though, I was on the ball enough to know that something was “wrong.” When I went to see my psychiatrist, Dr. T., I explained my predicament to her, and she was sympathetic, yet somewhat stumped. She was reluctant to boost my anti-depressant, as I have a propensity for experiencing manic episodes. Instead, she just tweaked my secondary mood stabilizer and asked me to keep her posted. She gave me a slip to get my blood drawn.

I can truly say I didn’t procrastinate on the blood draw. I had minimal free time—I was so infrequently awake--so I had to wait until a Friday, my day off, to get it done. Now, my doctor’s office is not the nicest in the world, but like every other health-related establishment in my life, they know me. The receptionist, J., greeted me cheerfully, and I sat down to wait.

The wait was severe, and my impatience grew to mammoth proportions. I eavesdropped on the guy-across-from-me’s conversation with his mother, where he talked about his globetrotting lifestyle, very different from my traveling-angst lifestyle. I was only sort of happy for him; the other part of me was envious that he was going to Barcelona on vacation. I wondered what he was “in for” at the doctor’s office. Probably a routine physical. He certainly didn’t have a mental illness…poisonous thoughts poisonous thoughts poinsonous thoughts…

“Wendy?” They called my name, just in time, too, as the grass in his yard had turned emerald green and was about to go neon, while my crab grass was withering away.

The gal that led me into the room was the one performing the blood draw, which didn’t enthuse me because I didn’t recognize her. I have spent many years being at the mercy of sub-standard phlebotomists, and the prospect of breaking in another one didn’t thrill me.

My instincts were correct: she flubbed the first stick. She told me that if she didn’t get it the next time that she was going to send me to the lab. I balked. The last thing I wanted to do was traverse Hillcrest in search of someone who could successfully take my blood when I had taken great pains to get here. Moreover, I had had to endure the cheery chit chat of World Traveler Dude. No, it was not to be borne.

I told the nurse that she could stick me as many times as she wanted, as long as she got it done. This seemed to help her relax because her next attempt was a go. Sighing with relief, I held my finger down on the cotton ball as she administered the bandaid. All done.

And all the pain (mainly the pain of waiting) was worth it because now, according to Dr. T, “it made sense.”

I read her email.

It turns out that one of my mood stabilizers had become toxic, and as a result, my thyroid wasn’t functioning. Both factors cause—that’s right—fatigue. Big time. I glanced through the email again. It was that simple. Subtract a pinch of this and add a pinch of that and voila! A recipe for success.

There was a lot of other medical gobbledygook in the message that I ignored. I was so happy that the problem was just going to go away.

Until I was at Borders the next day. I got a phone call—on a Saturday morning, mind you—from my primary care doctor’s office. There were some abnormalities with my blood work, and according to J., the receptionist, the doctor wanted to see me. In order to communicate with J., I had to blurt the word “psychiatrist” out in the middle of the graphic novels section, which was thoroughly embarrassing, I might add, but my stomach started to turn cold. When the primary calls on a Saturday afternoon, something is definitely afoot. The word “kidneys” came up in the conversation.

Kidneys? I have a mental illness. I’m not supposed to have problems with, you know, other stuff. The other stuff is supposed to be working just fine.

When I got home, I revisited Dr. T.’s email. Indeed, there was reference to “renal” somethingorother, and the request for tests. Tests. Apparently, the lithium I’ve been taking for 20 years affects more than just my brain. So when the Sandman came calling, this is what he leaves on my doorstep. Another date with the doctor’s office.

Maintaining mental health is a lifestyle, one that requires attention to diet, exercise, the right amount of sleep, attention to routine, practice of positive thinking, use of support, cultivation of friends, good therapy, medicine, and more. When I’m doing the drill, it’s hard not to be resentful when the medicines that are supposed to help begin to harm. Simply, it’s hard not to cry.

Of course, I’m jumping to conclusions. No one will really know what’s going on until I submit to the next round of tests, extremely annoying tests. Consequently, T. counseled me to cry after I knew for sure there was something wrong, but not before.

I don’t know. I might get some practice in before the real pity party, just to see how it goes.

Now, that makes sense to me.

Future Self Makes Good

Someone on a committee somewhere at my high school asked us to write a letter to ourselves to be opened ten years later. My letter went astray, and so the current alumni coordinator sent my mother my letter 21 years after my graduation. Mom forwarded it on to me, and I opened it, reading my thoughts at age 17.

The letter is as follows, with the opening quotation appearing on the back of the envelope.

Who Wills, Can.
Who Tries, Does.
Who Loves, Lives.
--Anne McCaffrey

Well, my dear, here you are, ten years later. I hope life held about half of the promise you thought it would. I wonder if you could share with me a little wisdom…I guess I’ll share some with you. Laugh and the world laughs with you; cry and you ruin your makeup. Don’t forget to smile often, laugh heartily, savor the precious times, and cry when necessary. Are you still dreaming? I hope so. Are you sitting next to Gilbert right now? Are you content? Remember to love life…and don’t forget—I have faith in you!!

Love, wisdom, beauty, smiles, sunshine, teardrops, daisies, and starlight,

Your Young Self,

Wendy

The first thing that struck me was the phrase, “half the promise.” Half the Promise? How much promise did I think I had, and what would half of that be? I chuckled with Young Self, a cynic at that age, already assuming that life would not live up to youthful expectations.

Hmmm…Half the Promise. I don’t quite think Young Self had a vision of the future clearly laid out, but I know it was something along the lines of the American Dream – Classic Edition. I expected to graduate from college and get a “good job,” hopefully working for a magazine. I hoped to be sitting next to the spiritual equivalent of “Gilbert,” the name of the boy hero in one of my favorite novels, Anne of Green Gables. I’m sure that I expected have economic security and independence.

Did I get half of what I wanted? Well, I graduated from college, and I have a “Gilbert,” my man, T., who is a stellar human being. But I don’t have a “real” job, nor do I have economic security. I have neither children, nor a dog, nor a white picket fence. Hell, I don't even have a lawn.

It all goes back to this idea of expectations. In a way, Young Self is still at work in my head from time to time, still pushing for that American Dream, never quite content with the way things are. But then, my life has been much harder than I expected. Young Self probably knew that there was such a thing as mental illness but had only a vague idea of what that might be. Nowhere in the Grand Plan of Wendy's future did it involve manifesting a chronic mental illness, bipolar disorder, with catastrophic consequences attached. I was totally unprepared.

But Young Self basically had it right: laugh heartily, savor the precious moments. Keep Dreaming. I am still dreaming...I'm going to dream my way right into graduate school if I can help it. I may not be walking up the "primrose path," as Anne of Green Gables used to say, but I'm walking up my path, and the terrain is getting smoother all the time.

Young Self, after sober evaluation, I think I did right by you. I think I got more than half the Promise, and my glass is way more than half full.

Thanks for the vote of confidence!

Forgiving the Fraud in Myself

I was at the NAMI (National Alliance on Mental Illness) Inspiration Awards Dinner, and at the end of the evening, a speaker got up and raved about a NAMI program called “In Our Own Voice.” IOOV is a public speaking program on mental illness delivered by people who have mental illness. This is the signature “stigma busting” program in the organization, where a human face replaces the ugly stereotypes of mental illness.

Presenters were asked to stand.

Now, I have been a presenter for over five years and have given over fifty IOOVs, yet I was reluctant to stand. In that room of 200 people, I didn’t want to be identified as a person with a mental illness. This was even after the keynote speaker gave us a passionate call to action as advocates. Even at this event, when I was with “my people,” there was an unexpected tendency in me not to be made to “come out.”

Embarrassed, I stood along with a handful of other people, and the audience applauded heartily. I was not proud but uncomfortable, and as I felt exposed, I chided myself for feeling exposed. Was I not supposed to be the advocate extraordinaire? The poster child for mental illness? The Great Recovered One?

When I sat down, my sister-in-law next to me rubbed my back and whispered, “I didn’t know you did that. That’s cool.”

Yes, it was cool, but I wanted it to be cool on my own terms. I wanted the people that saw my presentations to see my humanity, see my strength and courage, and then never see me again. I still wanted to be a “normie” in my daily life.

Case in point: I had dressed carefully and thoughtfully for the occasion, sporting a jacket with a dragonfly motif. I wanted to be known as the woman in the dragonfly jacket, not as the one with the mental illness. I was tired of that. I thought I’d outgrown the “mentally ill” label.

Of course, it was the wrong time and the wrong place to be tired of it, to feel beyond my label, when all the people there that I knew, which were many, already knew my story. But was a little anonymity among strangers too much to ask?

This thought took me aback, for I had come face to face with my own hypocrisy.

My two closest friends at the dinner had already gone, and so there was no one to talk to about my conflicted feelings. They were men, besides; I really needed a girlfriend to talk to, but there was no one. And T. had strategically avoided attending the event in the first place, so I was alone.

I watched as a man at the next table over put money in a donation envelope, a donation that was going to sponsor the public speaking program. I didn’t put money in the envelope; I didn’t feel like sponsoring myself.

As soon as the evening was winding down, instead of mingling with the crowd, I bolted for the door. I called my buddy who had left early, chastising him. I didn’t mention that I was made to stand up, that I didn’t feel like being an example that night. I don’t know if he would have thought I was being childish or that I was being what I was: a sham.

On my way home, I had some time to do some thinking. I thought about my therapist and what he would say about all of this. He would talk about the spectrum, about life being lived mainly in the grey area. He would tell me that I didn’t have to be the perfect advocate all the time; I was allowed to choose another identity, even in the most ironic of places.

He would have told me it was OK if I had kept my seat, period. That it was my right to respect my own privacy.

As I mulled over some of this therapy philosophy in my mind, I remembered a woman at my support group once saying that she felt as protective of her identity a someone with bipolar disorder as she did with her credit card numbers, and she held her numbers close to her chest.

Now would she be a marvelous human rights advocate? No. But this anecdote served to remind me that I can’t wear my illness on my sleeve all the time, even in a crowded room of people who applaud what I’ve done, what I do. Being bipolar all the time is exhausting.

I think I just need a break, and when I’ve had a bit of a break, I’ll tell my story once again, and my audience will appreciate the challenges of living with mental illness, and they will applaud, and I will go on, living as well as I can.

Even sometimes as a normie.

Farewell, Benson & Hedges Menthol 100’s

It will be a month tomorrow that I quit smoking, but I realize that saying goodbye to smoking is like getting out of a bad relationship. We know it’s a bad relationship because we feel the often unspoken disapproval of our loved ones; we see the gnarly anti-smoking commercials on TV. (One of my favorite anti-smoking commercials had smokers turn into skeletons, and then the skeletons would fall off of a conveyer belt and onto a veritable skeleton mountain.) All smokers know that smoking is bad, but what non-smokers don’t know is just how good smoking can be. Hence, even a bad relationship is hard to get over.

There are several kinds of cigarette moments one can have, but I’m just going to illustrate a few:

Smoking to Get Away from Non-Smokers: Since to be a “polite smoker” you have to excuse yourself from non-smokers, this provides a perfect avenue for slipping away to indulge in your vice simply to indulge in a few minutes away from an onerous dinner party, etc.

Smoking to Meet Other Smokers: If you see an interesting-looking smoker, it is quite easy to find a segue into a conversation with that individual. Just ask for a light.

Smoking Socially: Smoking is extremely ritualistic in nature, and quite often you develop a social pattern with another smoker. The classic case in my life is T. We used to share coffee and cigarettes on Saturday mornings at the homestead, and I can no longer be a part of that. Similarly, I have a close friend who used to indulge in my sinfulness with me, and now we no longer share that. It makes me sad.

Smoking PeacefullY: Having a quiet cigarette to yourself is probably the quintessential smoking habit. It is a way to get away, a way to get a moment, a way to calm down. Last night, in fact, I had insomnia, and when I can outside on the patio, I was struck by the lack of cigarette in my hand. I just had to appreciate the fresh air, emphasis on “fresh.” The feeling that there was something missing was fleeting, but I felt the pinch nonetheless.

Smoking as Medication: Smoking to relieve stress is a classic reason people don’t quit. Smoking can be an antidote for anxiety, nervousness, boredom, any number of ills. Now I have to find new medicine, hopefully new medicine that isn’t food. I’ve taken up exercise.

Don’t get me wrong. I’m proud of myself for quitting. But I know that every so often I’m going to feel a pang or a twinge. And I’m going to miss that occasional smoke with my friend on the roof of the El Cortez, or miss that cigarette with a glass of the best red wine in the world on my friend’s lush patio. These are moments that can’t be substituted for anything else.

They say that a person with mental illness lives ten years less than someone without. One of the main contributors is cigarettes.

I would like to be one of the people who changes that particular statistic.

I'm a Quitter!

I passed by the Ibis Street Market on the way to my therapist’s office, a ritual I engage in every Friday. The market is owned by a couple of Greek guys, one who is an outrageous flirt who tells me how beautiful I am when buying baklava. I also stop at the Ibis Street Market to grab an Aquafina, or a Gatorade, or an iced tea, and always a pack of cigarettes, Benson & Hedges menthol 100’s. The woman who rings me up always has elaborately painted finger nails, and she is a sweetheart. We commonly exchange pleasantries, and she knows my brand. I like that.

Last Friday, however, strolling by the Ibis Street Market, I was reminded of the cigarettes that I quit three weeks before. I wondered if I should go into the store at all. After sober reflection, I decided not to go inside and make do with the teeny tiny cups at the water cooler in my therapist’s office. Better than facing reminders of my old life. But something tugged at my heart strings when I walked by. The market was now tainted, but I missed my little ritual that the cigarettes provided. I wasn’t really ready to go in and be reminded of indulging in my vice, and it made me sad.

It’s been three weeks now since I quit smoking, and I won’t get any real props until it’s been a month, I think. A month is a milestone that people respect.

Granted, no one ever thought I could quit, including me. So how did it happen?

I owe it all to my psychiatrist, Dr. T. During the days when I was taking a summer school class, I was having trouble with my memory and concentration. Dr. T., as part of her treatment, prescribed the anti-depressant Wellbutrin.

Wellbutrin and I were made for each other, it seems. My memory and powers of concentration increased right away, so quickly that my reading level skyrocketed, and I had no trouble in the rest of the class. What I also was figuring out about Wellbutrin was that it took away the craving for cigarettes. I found that the amount of cigarettes I smoked was declining, as if by magic. Moreover, the cigarettes I smoked didn’t pack the same punch. The medication seemed to take the “reward” away.

I didn’t actually decide to quit smoking. I just stopped. My mother and step-father and T. and I went on vacation to Mammoth, and the first day up there, I just didn’t have one. And the next day I didn’t have one. And the next day…

Then I realized I was onto something, that I could be free of the poison. So I quit.

I realize what I miss is the ritual, not the cigarette. There was something comforting about having a cigarette after work, or after a meal, or with a friend, or with T. It was a pleasurable activity.

As I said, tomorrow it will be three weeks.

When it’s a month, I’ll remind you, and we can celebrate!

P/NP: Not the Question

"Students," Prof. S. addressed the class, "Get out a piece of paper for tonight's Reading Quiz. Write 'RQ' #7 on the top of your paper. Do NOT forget to write your NAME at the top of your paper. There were TWO students who failed to put their NAMES on RQ#6. That is a way to FAIL the quiz. Eyes on your own paper. Question #1..."

The reading quizzes put the fear of God into the class. They represented a substantial part of the final grade, and to obtain a perfect score (which I only did once), one practically had to commit all the copious (and often dull) reading material to memory. (That week of the perfect score, we just happened to be reading Edgar Allen Poe, who I love, so I didn't mind reading the assignment 3+ times.) Whenever the reading quiz was announced, the class recoiled in fear and horror. Only one student aced them all, but he went to UCSD and was on his way to medical school, and he had to get an A. His future depended on it.

Really, it felt like everyone's future depended on it. But the quizzes were hard. The papers were hard. The in-class exams impossible. It seemed that I chose the absolutely worst class to have a disability in. Over half of the original students had already dropped and a handful of those left were poised to fail.

The miracle: I was passing. I had done well on my two take home papers, which was salvaging my grade, as I was tanking on the reading quizzes (like everyone else.) What I couldn't believe, though, was the change in my performance level. I could read and retain hundreds of pages worth of often tedious and difficult reading material. I was enjoying the in-class films and discussions. Essentially, I had morphed into a normal human being.

* * *

I'm just waiting for Prof. S. to email me my grade.

Now that I can read, concentrate, focus, sit still, stay plugged in, it's hard to look back and remember what a struggle it was at the beginning of the class. I had to remind myself and try to wrap my head around the word "dementia." Was I really that far gone? Could I really not grasp a minute and a half film? Did I feel myself separating from the rest of the world? Was I that profoundly disabled?

Of course the answer is "yes." If it were not for Dr. T. and her medical intervention, I would have dropped out of the class, feeling utterly incapable, and taken it out on myself until the end of time.

The real lesson of the class is this: Symptoms aren't personal, and they can be overcome.

And if I can survive American Literature 210, I can survive anything!