A woman named Deb, who is a fellow member of my weight loss team, The Losing Streaks, e-mailed me today to tell me I wasn’t getting enough protein or vegetables, that fruit is nothing but sugar and rice cakes are nothing but air. She said probably that’s why I didn’t lose weight this week. You and I know better: I binged on Saturday and again on Monday. I was having some symptoms (confusion, agitation) and bingeing was how I responded, unfortunately. I didn’t tell my team. Shame on me!
So I was up 1.2 pounds, and Deb’s criticism didn’t sit well with me. She herself eats very little or no carbs, and seems to think her way is better than mine. I don’t think it’s anyone’s place to criticize my eating, nor do any two people agree on particulars of nutrition. I was doing the best I could, and that was the best I could do.
I could have told her off, told her she had no right to criticize what I put in my mouth, but I thought twice about it. I realized that eating is a sore spot for me, and that I was probably overreacting. Best not to cause trouble. I wrote back a friendly, polite note “thanking” Deb for the advice.
I thought she’d stop there, but she wrote yet another e-mail criticizing my eating, and another, saying, “I raised three kids, I should know.”
You know the type. Know-it-all. At this point I was rather ticked off, and I felt the urge to cry. I realized that my feelings were escalating, and that this stress may bring on more symptoms, so I took a Thorazine and ate lunch.
I came back to the computer. I considered sending Deb a polite note saying, “Get off my case,” but then I remembered the advice I gave in my entry, “On Anger.” Not only did I let go of my feelings, but also I sent back an e-mail thanking her again for her wonderful advice, as if I believed she was truly right and I was always in the wrong.
I realized that if I thanked her enough, she would probably feel good, if not somewhat embarrassed by my compliment.
Yes, I’ve stuffed my feelings. But that is better than allowing annoyance to turn to anger from an ensuing argument. It is better than arguing and then getting symptomatic from stress. Stuffing mild feelings of annoyance is better than stuffing my face. And we all had a better day as a result.
I am told that I am passionate, and that this quality has certain disadvantages. Passion is akin to obsession, more often than not a cancer that pushes aside everything in its path, by degrees. Healthy tissue squeezes into impossible spaces; a lump of evil grows and obliterates whatever it touches. It’s not something for which one asks. One wakes on a cold morning to find coal in one’s stockings. You are the doomed, the one chosen to follow the flame to wherever it leads. And it can lead to horrible places.
Male psychiatrists love to reduce their female patients to “feeling machines,” and “menstruating machines” follow closely behind. “You are sad.” “You are envious.” “You are angry.”
The latter is a favorite of Dr. B, who last I knew worked at the Short Term Unit at McLean Hospital. He tried to convince me that I was the angry one that harbored this cancerous feeling, that I didn’t know what to do with my anger, that I acted on anger inappropriately (often turning it inward, he said). Convening with other patients proved correct what I suspected, that the good doctor had repeated this exact same anger mantra to every patient on the floor. We were amused, and our amusement heaved up like an iceberg. Yes, the doctor himself had made us all rather pissed off.
But back to passion: I am embarrassed to admit that I was once passionate about ending my life. All my thoughts and actions were channeled into a single, forbidden, one-way path where the sky was not luminescent, where blood was rigid and eyes dull, where a weary person could find some rest by a cold fire. For about six months I thought of nothing else. My therapist, Dr. M, reminded me at every session that her job was not to help me die, but to help me live, and should she find herself in the former role, she would politely bow out.
It’s not something I talk about much. Talking about suicide annoys people, and it annoys me to hear others ruminate on the topic (I generally “taddle” on them). I spent days by the railroad tracks memorizing the train schedule, but when it came time to lie on the tracks I decided to wait–just one more day. And for those months I walked that tightrope.
It seems incredulous to me now that I kept a journal throughout that difficult time. I kept careful records of everything from what medication I was on to how many cigarettes I’d smoked that day. I kept all my papers in neatly labeled notebooks: “Julie’s Progress.”
I suppose a therapist would place utmost importance on what followed, how I found cyberspace and discovered that I was capable of making friends and helping others in ways I never realized, how I broke the cycle of self-generated codependency and stopped allowing life to jerk me around. I discovered writing.
At first it was little more than writing in my journal, but soon I began a novel and finished a draft eight months later. I kept on writing, wrote two more books, majored in writing, and graduated from Emerson College (www.emerson.edu) summa cum laude in 2003. All this you probably know from visiting my site, www.breakdownlanetraveled.com.
And you know what followed: Joe’s death. The notice of his passing still tops my website’s home page. I can’t let go of it, even now that three years (this August 19th) have passed, even now that I have reluctantly been in other relationships. I miss him like crazy. I also lost my dog, Tiger. She is in heaven with Joe.
Writing stopped at that point. Two days after Joe’s funeral I found out I’d been accepted into Goddard College’s MFA in Creative Writing program. I accepted the invitation but worked at school half-heartedly, having lost my drive to write entirely. My fellow student and friend, Jennifer, and others have reassured me that every writer goes through dry periods, that I should simply open a blank document and write. Just do it. But I can’t.
I don’t look the same anymore, having put on over 100 pounds from the medication Seroquel, an antipsychotic doctors love to prescribe because it makes us shut up. As I increased in size, obsession over my weight grew, a cancer that pushed aside all passion for writing, and masked my grief for Joe. It’s easier to think about my weight than to feel grief over the man I loved passionately for 13 years. When I should have been writing, concentrating my efforts on sentences and paragraphs, I was dieting instead, stepping on the same scale over and over.
During my last hospitalization I revived my journaling. I picked out a cute pink notebook decorated with coffee cups from the Occupational Therapy room and began to write: “In this setting, we are treated like children. The groups are like third grade all over again. Today we had coloring….I left the group because I didn’t think it would enhance my treatment….I didn’t know where I was, even though I’ve been [to that place] many times. I lost five things today. When people talk, I can’t hear them properly, and when I talk, all hell breaks loose in my head.” That notebook is mostly filled now, with comments on various life activities, rants, and stories of QB, my new dog. And yes, there’s plenty in there about my weight.
I’ve started going to the library to write, in attempt to smother out the diet-centered self and allow room for the writing self to grow. Can passion truly be redirected? I am making an effort. I am opening documents and starting to write. Folks who read my words don’t care what size I am.
Come, follow me as I blog along, as I stumble, shake myself off, and then begin again.
A REPEATING DREAM
Following one of my hospitalizations, my parents rent an apartment for me. Usually the apartment appears very small. The building is on a hill much like the dormitory area at UMass/Amherst where I once lived. The apartment is at the far left as you face the hill, and the entrance is in the back. It was tough finding this place, and I can hardly wait to move in. There is a halfway house about–yes, halfway up the hill that rents rooms and serves meals, but I have no interest in living in any situation that compromises my independence.
One evening, I ride my bike to the trolley stop, which apparently is in Newton, Massachusetts, a ten-mile bike ride from the hospital where I’ve been staying. The bus to the top of the hill runs every 20 minutes or so. I leave my bike by a tree and just make the next trolley.
The ride is quick. I get off at the last stop and wander about. Aren’t the shrubs arranged differently? Where is my building? Where is the apartment?
Alas, I’ve rented an apartment, don’t have the telephone number or address of the landlord, and haven’t a clue where the apartment is. I try the key in several locks, which brings suspicious looks from neighbors, and one resident picks up her phone to call the police on me.
I step onto the next trolley back to Newton. Without an apartment, I have nowhere to go except back to the hospital. The trolley is near empty because it is late at night, and the ride goes without incident.
I head back to where I left my bike. But my bike has been stolen! Why didn’t I lock it? What am I going to do now?
I wake up wondering why I have this dream repeatedly. It has been a long night.
This really rambles….
I once had a bout of insomnia that lasted several months. I slept two hours a night. After a time I became agitated. On a walk with Tiger (my dog) I saw a man standing by the side of a tire shop, smoking a cigarette, and I wanted to kill him, just because he was there, and at that moment it took everything in my power not to do him harm.
It all started when I saw psychiatrist named Dr. Michael Detke, who eventually stopped treating patients and went into research. He couldn’t understand why I wasn’t sleeping, so he sent me to the sleep clinic at McLean Hospital.
There I met with a psychologist (not an MD) who told me I had bad “sleep hygiene,” meaning poor habits regarding sleep, and that’s why I wasn’t sleeping. (Looking back, there was nothing wrong with my sleep habits.) The psychologist told me I should turn my clock so that it doesn’t face me, and stop listening to the radio as I fell asleep, and those were the only changes she could think of that would help. I had to keep sleep charts, which was my first and only reason for using Microsoft Excel, noting what time I went to bed, what time I woke up, and so on.
This continued for several months with no improvement. At my last appointment, the psychologist told me I was doing “extraordinarily well.” As he said these words, I struggled to keep my eyes open and my head erect. I was on the verge of collapse.
Meanwhile, Dr. Detke continued to raise my Effexor, a stimulating antidepressant, and lower my Seroquel, a very sedating antipsychotic. At the hospital, it was more of the same: insistence that I needed more antidepressant.
The doctors at the hospital were just as incompetent as Dr. Detke; in fact, my first inpatient doctor was fired from the staff while I was there. I was transferred to another incompetent, Dr. Abraham, who raised my Effexor more, then threw his hands up in the air and said, “Your insomnia will take a year to solve. Goodbye.”
Goodbye and good riddance.
On that note, I was released from the hospital. I had no desire to see Dr. Detke ever again, and I found myself with a wonderful doctor named Dr. David Brendel. He asked me a few questions, to which I sleepily replied, then he looked at my medication list and said, “Whoa! Your medications are all wrong.” He took me off Effexor entirely and gave me more antipsychotics, including Thorazine. After two weeks of treatment with this new doctor, I slept.
It is said that Pope John Paul II slept only an hour every night. People suffering from mania sleep very little. I need about eight hours. Most people with mental illnesses notice their symptoms worsen when they are sleep-deprived; I am the opposite. I have deliberately deprived myself of sleep at times, to “protect” myself from Evil Beings, and it works. I wish I could keep it up, but eventually my body forbids me to stay up any longer. A periodic all-nighter does me a world of good. A research study suggested sleep-deprivation can help people with depressive symptoms, but the study was dismissed as unsubstantiated, and I’ve never heard of sleep deprivation as a “cure” for psychosis–quite the opposite. For instance, last night my puppy woke me for his usual midnight romp. (Pain in the butt that he is, I do love the little squirt.) I felt restless and stayed up the rest of the night. Today I feel cleansed of illness.
People of certain religions believe that denying oneself food is cleansing to the body and soul. Many religions encourage a modest lifestyle and restraint regarding pleasurable activities. A person who eats excessively is a glutton. One who sleeps too much is lazy. A drinker is a drunk and a woman who overindulges in sex is a slut. But to hold back, to restrain oneself is considered stoical and brave. I am reminded of the giving up of pleasures for Lent, a practice traditionally upheld by Catholics and many non-Catholics nowadays. To quit smoking is admirable. Giving up sweets will improve one’s oral health. But to quit entirely something the body or mind requires for functioning is impossible or at least unwise.
People with severe mental illnesses require medication to stay mentally healthy. A certain few will refuse medication and still live fairly reasonable lives, but the vast majority of us require medications. Stopping medication is the number one reason that mentally ill people are re-hospitalized. I have occasionally gone without medication, though at these times I usually am mistaken as to whether I’ve taken the pills, and the result was hospitalization each time. Even lowering medication, without my doctor’s approval, has led to disaster. Unlike restraint for the purpose of cleansing, going without medication is not only looked down upon, but also considered damn stupid. Almost all violent acts committed by people with mental illnesses are done while the patient is not taking the required medication; patients who “cooperate with treatment” are no more violent–if anything, less violent–than the general population. Perhaps we can consider it an act of discipline to take one’s pills every day!
When I can’t sleep, I suffer; when I choose not to sleep, I thrive. Perhaps choice is the factor here. To take control of one’s life is to choose wellness over excessiveness, moderation over extremes. To be in control of one’s actions, though one can’t always control the results of one’s actions, is a reasonable way to live.
But what of adventure? Don’t I need to give up that control every now and then, to set out without a map or compass just to see where I end up? Certainly, a person with an excess of control has little enjoyment in life. I have known a handful of people who wrestle with that problem.
To control what one can, and to let fate control the rest, is the key. To rest my head on my pillow is my choice; whether I sleep well is less controllable. I choose to take my medication (though I hate taking it), and take good care of myself, but that won’t prevent breakthrough symptoms to appear now and then. Adventure has its place, as does regularity. I’ve deprived myself of sleep–or, perhaps it is my puppy who has denied me sleep–let me sleep well tonight. If I wake up tomorrow morning alive and breathing, I’m having a good day.
I was actually asked to speak at a NAMI meeting recently. I couldn’t do it because I had a class. It would have been a scream to read this essay at one of their meetings.
I can’t help but conclude that the person who invented the term “consumers” was some do-gooder parent who couldn’t stand hearing their kid being called a “mental patient.” No, it wasn’t the kid who minded being labeled a mental patient, but the parents who, in their shame, had to invent another word for what we really are.
Think: “Consumer” means nothing. It means Consumer Price Index or Consumer Reports. A consumer protected by Ralph Nader. A consumer buys a car, a computer, carpeting, or coffee.
Do we call cancer patients “consumers”? Certainly not. Consumers of what? Cancer care services? Chemo?
Who really does the buying here? The drug companies market to doctors, not to patients. For the most part, we have little choice regarding services; we use what’s covered on our insurance.
Okay, “consumer” implies one who discerns, makes decisions regarding acquiring something. A consumer needs or wants something and chooses what to buy, where to buy it, and by what means. A new TV. Gloves. Chocolate.
We aren’t even the ones doing the buying. We take whatever insurance we can get, from the workplace or from the state or federal governments. Very few patients choose their health care plan; it is decided for them, which means we are not consumers but recipients of health care plans and health care in general.
Some do-gooder parent (or patient in denial) wanted to emphasize the pick-and-choose aspect of mental health care, implying that patients are discerning and proactive. But do we really need to be called “consumers” to prove this?
Truthfully, mental patients, as a subset of patients in general, are the least able to make choices about their care. The looming of “involuntary treatment,” “locked ward,” and “privileges” drive my point home here. Why should we cover up the fact that it is the lack of choices is what defines us? Pink paper. Section 12. Restraints.
There was only one time that I was allowed to make a choice about my care. Due to the unreliability of Medicaid cabs, I had to stop seeing my therapist Dr. Barbara Rosenn, a fine psychologist who helped me immensely. I was given a choice: Dr. Elsa Ronningstam or another therapist whose name I forget. On Barbara’s recommendation, I chose Dr. Ronningstam, one of the biggest treatment mistakes I’ve ever made.
What choices the term “consumer” does not imply are the most important choices a person with a mental illness ever has to make: the choice to seek treatment, the choice to cooperate with treatment, the choice to be willing to heal. The meaning of the term “consumer” doesn’t include this willingness. “Patient,” on the other hand, specifies a person who is a recipient of medical care. “Mental patient” is a person receiving mental health care. Not all mentally ill people are patients; many do not enter treatment, sadly. But people who recognize their illnesses generally are those in treatment or seeking treatment, those that should be proud to be mental patients, those proud enough to shove away the hands of those that pat our heads, beam with token pride, and call us their little “consumers.” God help us.
Here’s another piece from the “old blog” that I truly enjoyed writing:
SAGE CITY SAGA
It was once common for a mentally ill person to lose all his or her friends upon becoming ill. Back when I got sick (1980) it was almost universal. It became a sad joke among us when we realized we would have to earn a new set of friends and that these people would most likely be from inside the mental health system. Even those that I thought were friends for life didn’t stick around after my first hospitalization. Many patients agreed that social discrimination was worse than job or education discrepancies. Having experienced all of these, I would have to agree.
I once played in an orchestra called the Sage City Symphony, in North Bennington, Vermont, conducted by Louis Calabro. I began with the orchestra in 1978 when I first moved to Vermont; Lou personally invited me to participate. The orchestra was made up of community residents, Bennington College faculty, and students at the college, and we rehearsed in an elementary school in North Bennington. Because I had studied music at a previous college and my main instrument was trumpet, I was given a special welcome; they needed trumpet players and now they had one. I played first trumpet, the lead part. There were three trumpets altogether.
During my second year with Sage City Symphony, I composed a five-movement suite for orchestra called Tara’s Dream. After many rehearsals, the orchestra could play the piece, and the performance was fairly well done. Both the audience and the orchestra itself gave me a rousing standing ovation after the piece was finished, and several people gave me flowers right up there on stage.
That year and the year that followed were perhaps the peak of my experience with Sage City Symphony; from then on, everything went downhill. I was too ill to continue with my studies at the college, so I moved in with my parents near Boston for about nine months, and then returned to Vermont. I moved into a half-duplex near the school where the rehearsals were held. I had gained a few pounds, wore thrift store clothes and make-up. I was assigned third trumpet, not first as I had played in the past. It was about the same time that I’d been seeing that therapist Pete Collier, whom I mentioned in my last entry. The concert for which we were rehearsing was to be held a few weeks before Christmas, 1982.
One of the pieces we rehearsed I was already familiar with: Charles Ives’ Variations on “America”. I had played a symphony band arrangement of the piece several times with high school and college groups. Variations on America wasn’t my favorite piece, but it did inspire me to write a short piece called Variations on “Pomp and Circumstance” to celebrate my high school graduation.
The passage in question involves the three trumpet parts at the end of one of the middle variations, which ends with only the three trumpets and percussion. The third trumpet plays on the downbeat while first and second play on the upbeat. Boom (rest) (rest) boom (rest) (rest) boom-chick! the “chick” being the first and second trumpets.
Because it’s a well-known passage, every trumpet player who has played this piece is familiar with the discrepancy. Apparently Lou Calabro wasn’t, though he had the score in front of him while he conducted. Again and again he had us play those last few measures, yelling all the while, “Julie, it’s on the offbeat, the offbeat! What is the matter with you?” I was playing what was written in my part, and I knew I was right.
Discrimination against people with mental illnesses takes on many forms. At www.schizophrenia.com we sometimes discuss discrimination on the job and in school. With the advent of the Americans with Disabilities Act, discrimination has diminished significantly, but when it comes to disability resulting from mental illness we have a long way to go. Lou Calabro was discriminating against me in the most cruel and blatant fashion that I could have imagined.
Over and over he had us play those few measures. I held my ground and continued to play on the downbeat. Lou slammed his baton on his music stand. One of the cellists excused herself and tiptoed off to the ladies’ room.
Finally, I handed my part to Susie, the first trumpeter, and she said to Lou meekly, “She’s right, Lou, she’s actually right.”
I know what I should have done. I should have marched up to Lou and told him myself: “Look, see? You are not blind. Look right here in the score. The third trumpet plays on the downbeat, while first and second play on the upbeat. See? See?” I would have pointed to the exact spot on the score. I knew it was there. Boom, boom, boom-chick! I should have said, “Lou, I know you’ve lost all respect for me because I have a mental illness, but having an illness doesn’t mean I’m suddenly stupid, or that I’ve lost all the musical knowledge I had before. Boom, boom, boom-chick! See? You only doubt me because I’m sick! Admit it! If I had the flu, would you doubt my musical ability? If I broke my leg, would that mean I could no longer distinguish an upbeat from a downbeat? Is this kind of illness much different?”
I never truly made a comeback in the musical world. You hear about people, talented people, leaving the field for a while to recuperate, and then creating a sensation upon their return. It was not that way with me. When I returned to school in 1998, I concentrated on the written word. It hurt too much to play music.
On the night of the concert, I wore a skirt two sizes too big for me, a sweater with holes in it, and carelessly applied make-up. My hair was greasy and uncombed. My sleeves barely covered the razor cuts on my arms. I decided to drive to the school so I could get home quickly after the performance. This was it. I would show them I knew the difference between an upbeat and a downbeat. I was not stupid.
On the occasions that you think you’re on top of things. You are often the biggest fool of all. Lou Calabro was a fool, and I was going to prove it to the world, but I, too, was a fool….
The temperature was in the single digits that night, and the roads were thick with ice. My old Saab sputtered around the school and toward the parking lot for the performance. I shifted gears and rounded the corner. And then I saw before me an empty parking lot.
The concert had taken place the night before. I had missed it. I came on the wrong night.
After I was discharged from the hospital, I did not return to Sage City Symphony. I was done. Finished. Ruined. No mention was made of my absence that night. There was no need. Someone sent me flowers and then I never heard from her again.
I threw the flowers away. I threw everything away. I made friends with people I met in hospitals, but most of the relationships didn’t last. I gave up driving. I gave up cigarettes. And eventually, I pulled my life together, and I’m able to see my experience with Sage City Symphony for what it was: discrimination, plain and simple. I don’t regret not showing up for the concert; it seemed a fitting end to the story. What I do regret is that I didn’t speak up for myself.
Lou died several years later of lung cancer. The orchestra staged a performance in his memory. I didn’t attend.
Here’s the piece I came up with in June, posted in the old blog, that describes some of the tortures the Beings come up with:
As early as twelve years of age, I recognized Mind Torture. At the time I described it as, “All the little men in my head fighting against each other.”
That description wasn’t far off from the Mind Torture I experience today. Imagine your head fighting against itself. Imagine your brain in such turmoil that it becomes inflamed enough for your skull to crack. Your mind seeps through the cracks and is exposed to raw air, and recoils as if having touched a sliver of glass. The incision stings. You are allergic to yourself and cannot escape; you are imprisoned along with all your selves in a leaky space suit; in a short while, the oxygen will be gone, and it is in this moment that you are suspended, waiting, burning, hating.
Many people have asked me to write about the Beings and The Thing. I am only now beginning to be able to write about them effectively. This video illustrates what it can be like living with Evil Beings:
The Thing was worse.
Sometimes I try to write about The Thing and the Evil Beings try to interfere. It can get very complicated.
The large, two-section, four and five story building in the middle is mine. My apartment (from which I am writing to you now) is in the right, five story section, the “B” side. If you listen closely–yes, put your ear very, very close to your computer monitor–you can hear QB sighing in his sleep.
I’ve been sitting here at the library for two hours staring at a blank document and–nothing. My intention was to write a follow-up to the past two entries. There are many possibilities but maybe I wanted to talk about God for a little while.
I often doubt that there is a god. God is that doubt. God is the contradiction. God is the love marbled into my self-hatred.
If I’m tail-chasing, God is not the tail; rather, God is the never-catching Verb.
I prick my thumb with a pen nub. God laughs.
My hands and I are trickling along a spiral. I’m slinking toward God, God that stings like fresh lavender.
Flush with pink, I slide a finger over the threshold. God wipes it away. Again, I present to God a fleshy finger, a second offering. God denies it.
God denies me everything: honesty, faith, hope, love. God thrusts the curtain shut, and in a flash there is nothing but darkness, blood, vermin.
In the darkness, I do not have a tail to chase. I only have the tiny, soft hairs on God’s skin, oh rapture–
On the verge, God’s agony smashes mine, and a third offering brings God to a roar.