Not invisible yet

This is a continuation of the story I started to tell in the previous post. Start there.

I opened the mail. Bills, bills, bills. The words of the counselor at Consumer Credit Counseling Services ran through my mind. Just pick out the card with the highest interest rate and ask the company to work with you. If they won’t lower the interest rate, ask for a lower monthly payment. You’ll pay more interest in the long run, but you’ll free up cash to take care of your medical expenses. That’s the best we can do for you, Ms. Voirrey, since you’re not late, in arrears, or over limit on your accounts.

I had already run out of cash and had no way to pay for my medication. Lithium is cheap, but it only works on one part of the problem. EMSAM and Lamictal were the most important elements in the mix at that point, but there was just no way. I skipped the Lamictal, stopped taking Ambien for the time being and substituted Alprazolam to help me sleep. At well over $200, EMSAM was out of the question.

I was completely unprepared for how quickly my body responded to this change. I felt like my head had been smashed through a wall of depression and with such force that it had permeated my skull. I was dizzy, sad, foggy, and slow. Very, very slow. It was like trying to focus on a slow-moving object yet being unable to hold onto it for more than a few seconds, except the sensation went on relentlessly. I felt as though I had lost all the ground I had gained in the previous five months, and it slipped away so fast, it seemed surreal.

Work out the money, May, get the medication. I put down the mail, and then pulled out the Diner’s Club bill. What the hell. It was the card I’d had the longest—about 15 years. It seemed like a safe place to start. I called customer service and started into my spiel. The customer service telephone clerk had an attitude. It was a man, African-American, not very friendly, and he appeared to be incapable of actually answering my questions, finding a supervisor, or even comprehending what I was asking. As the conversation continued to go in circles, I could feel my temper rising and my ability to be polite slipping away.

Eventually, I said, “So, what you’re telling me is that it doesn’t matter what I say or do, you not only refuse to help me or work with me, you are going to deny me access to a supervisor or another department where I can speak with someone who has the authority to provide some actual customer service. Is this correct? Yes or no?”

“Ma’am, Ms. Voirrey, I am not going to change your payment.”

“Yeah, I get that. Please transfer me to a supervisor.”

“I can’t do that. Nobody is available to talk to you. I can process your payment now, over the phone.” The arrogance in his tone smacked of condescension and mockery. To this day, I can’t identify what motivated his attitude toward me.

The anger inside of me slammed into the front of my head and came out of my mouth. “Look. I plan to be dead six months from now. I want to get my bills taken care of so I don’t leave a mess for anyone else to sort out. I’m doing the responsible thing. If you will just listen and work with me, your company will actually get paid faster and in full. Do you get it?"

By this time, I was sobbing, and I admit it probably proved detrimental to my credibility. The dickhead on the phone backed off and said, “Whoa, whoa, you’re OK with Diner’s Club. You’re good with us. Are you home alone?”

“Yes, I’m home alone. How the hell is that any of your goddamn business? Are you coming over to pick on me in person? My husband will be home in a couple of minutes. He knows what’s going on.” I took a breath and tried to take back my outburst. “I shouldn’t have said what I did. I’m very, very sorry. I apologize. I didn’t mean to say something bad that has nothing to do with anyone but me. Forget I said that. Please have a supervisor call me about my account.”

My apology sounded insincere, and it was. It came out like the apology a kid makes when forced to do so when there’s no remorse. Yes, a little snide.

I got off the phone and turned on the TV. I went into the kitchen and fixed a small plate of cheese and crackers. Time for Jeopardy! I kick ass at Jeopardy!

How I became invisible

In late 2006, after two years of struggling to get my medication-resistant bipolar disorder under control, rapid cycling and all, I thought I had been through every humiliating aspect of the illness. It is a humiliating illness, and anyone who tells you otherwise either has no connection to the real world or lives in such isolation and insulation that they haven’t really had the opportunity to be exposed to Life as We Know It.

There’s a shitload of stigma attached to Bipolar Disorder. There’s a lot of misinformation floating around out there, and a lot of misunderstanding about what the disorder is and is not, as well as flat-out disdain from those who believe it’s somehow willful or a matter of self-control. I watch my mouth, I lie abundantly, and I do everything possible to never, ever let on what my diagnosis is or to reveal when I’m having symptoms. It is exhausting, this living two lives in a simultaneous overlay.

When the fall of 1996 rolled around, I was depleted. Depleted of courage, depleted of fight, depleted of energy, depleted of dignity, and above all, depleted financially. Everything was a fight—the medication regimen, the day-to-day management of symptoms that just wouldn’t go away, the inability to sleep, the lithium-induced brain fog, the loneliness, the money.

The good news was that I had been put on EMSAM and it was working. The bad news was that I couldn’t afford it, and insurance wasn’t yet ready to pony up. In the first 18 months of my illness, I paid close to $10,000 in out-of-pocket medical expenses (not all BP-related). I had no money, no cushion. I paid for bills using credit cards, and although I was trying incredibly hard to dig myself out of a very deep hole, it seemed like I just kept getting slammed again and again with something new.

But I tried. “Try” was my signature, although most attempts at doing anything seemed to backfire. I just wanted to fix it—all of it—but I couldn’t seem to catch a break. I went to see Consumer Credit Counseling, but they told me they only work with three of my creditors, and I would do better just calling the companies myself and trying to negotiate a more manageable payment schedule. Yeah, that really works. Ha! Credit card companies take an evil glee in fucking over people who are genuinely trying to get out of debt. It’s sick and frankly, I think it should be illegal. It’s predatory and steeped in greed.

It breeds resentment and frustration. These are not feelings I manage well when I am cycling through the Bipolar Wheel. Although I can be calm, controlled and level-headed in crisis, when I am tired, sad, and depleted, there is no mechanism in my brain that can properly process resentment and frustration. There is no coping skill big enough to corral these emotions, and they are the very ones—along with anger—that get me in trouble again and again. I can see it happening, like an out-of-body experience. It is painful to watch and worse to experience. I become powerless in the face of my own irrational behavior and that makes me feel even worse.

At Thanksgiving last year, my mother came to stay for the week. She lives far away, so visits are never short. My mother is difficult even under the best of circumstances. Pile on not feeling well, being stressed out and broke, and running interference between my mother and my husband, and the whole holiday left me feeling drained and short-tempered.

On the Monday after Thanksgiving, November 27, I came home from a very bad day at work. I had a huge presentation to do the next day, but I felt overwhelmed by the prospect. If I could just tweak the PowerPoint. If I could just focus and feel more comfortable in front of people. I just needed to work out the slide order and the timing.

My husband came home and before taking the dog out for a walk, asked if I was going to try and call any of the credit card companies. I told him I didn’t want to—I wasn’t in the mood. In retrospect, I should have followed my feelings on that one.

I’ll stop here for now and continue in a later post. I need to catch my breath.

The Pilates Monster

Black Friday. It sounds so ominous until you find out it's a geeky accounting word.

I started off my Black Friday at the private gym where I go for my Pilates sessions. I'm not there for my health so much as for the free Pilates machine that I can sell and parlay into months of pharmaceuticals. The research study I'm in is a bit more rigorous than I planned. Bob is killing me. Well, maybe not. It's just that on the Home Shopping Network, the models make the whole thing look so effortless. Reality check: It is not effortless.

I've come to think of my sessions with Bob as a form of self-inflicted punishment. What the hell was I thinking? I was thinking about those leggy ballerinas gliding through their Pilates routines and going on and on about what a gentle exercise it is. Doh! I am not a ballerina!

The gym is deep in the basement of the Jazzercise building, in a dark corner away from all other human interaction. The floor is black. The ceiling is black. It is obviously a dungeon. Bob always asks what the weather is doing when I arrive. It is a windowless, disorienting place. The Pilates machine even has a name befitting its role in this drama: The Reformer. It looks like a frightening device from the 17th Century, all wood and metal with straps and bars. Eeeeeee!

Bob is determined to reform me. Today he decided it was time to tackle my posture and abs--disasters all around. He said we needed to get to my core. My core! I am a pear, but it hadn't occured to me there would be a core involved.

The Reformer loomed large. I endured. For one hour, I endured. Now I feel like I had an appendectomy just before embarking on my Black Friday shopping. How is this going to improve my posture if I'm permanently doubled over? Glaaaaa.

My very own Reformer is in the garage, still crated. Tomorrow we assemble it and set it up in the home dungeon. Basement. Gym. That place that's not my Happy Place.

Exercise=tedium + pain. And people actually thrive on this?

When the brainucopia runneth over

Having spent yesterday feeling grateful for many, many things, I was still left with the nagging feeling that I had forgotten something. I made a mental checklist: The iron was off and unplugged. No candles burning, no doors or windows left open, the stove is off, bills were mailed, no appointments missed...

Ah! Yes. Today I went rooting through the mountains of paper clutter that teeter in every corner of my home office (and the coffee table), looking for the birthday card I knew I bought for my husband about a month ago. I never buy cards in advance for just this reason--they get pulled into the paper clutter vortex, not to be seen again until the next time we have company. Maybe. If I actually sort the paper clutter and don't just throw it into a shopping bag for its next stage of storage.

I found the bag with the birthday card, along with three other cards. Ohhh, Thanksgiving cards for my mom and a friend. Crap! How could I forget to mail three cards? Forget the mail part. How did I forget I bought three cards in the first place?

I am senile. I am a flake. My brain is full.

Playing doctor

My psychiatrist is so comfortable with my knowledge of pharmaceuticals and my diligent pursuit of knowledge in that regard, he doesn't have any reservations about me tweaking my own meds. It helps that I'm responsible and I don't abuse, well, anything except my own self-esteem.

Toward this end, I'm making an adjustment to my EMSAM. In case you missed it in earlier posts, this is the $472-per-month miracle that gave me my life back. And massacred my bank account. EMSAM is a transdermal form of an old drug--selegiline--an MAOI. It is prescribed for major depressive syndrome, and works especially well for those of us who have hellacious reactions to SSRIs. When you have a condition as complex as bipolar disorder, having an entire class of drugs taken off the treatment table is reason for serious dismay.

EMSAM has two major drawbacks, and they are so significant as to classify this medication as an "after everything else has failed, try this" kind of medication. The first issue is that EMSAM is contraindicated with almost every other drug on the planet and quite a few foods, as well. In other words, if you can't self-monitor and pay attention to what you're putting into your body, this is not the drug for you (unless the threat of hypertensive crisis doesn't make you flinch). The medication itself causes an astounding change in blood pressure all by itself, so the contraindications need to be taken seriously. I've had freakishly low blood pressure my whole life, but in the 17 months I've been using EMSAM, I have developed high blood pressure.

The first and most significant side effect of this medications is...drum roll please...insomnia. At the time of year when so many people north of the equator are fighting off the urge to hibernate, I am hopelessly sleepless. I'm not like Martha Stewart, who sleeps four hours a night and goes about her day without any ill effects (other than being a supreme bitch, which may just be a character flaw). No, I need sleep or I risk going into a tailspin of mood and functionality.

So, in an attempt to alleviate my chronic, severe insomnia, I'm knocking down my EMSAM to the beginner dose of 6mg--a 30% decrease. A bold move at my most vulnerable time of year, I know, but if I start backsliding, I can always bump up the dose. I love playing pharmacist. Bwahahaha!

This reminds me: I want to write a letter to Bristol Myers Squibb. You know, if you look at other transdermal medications like nicotine patches or motion sickness patches or even hormone patches, the medication identification is on the part of the patch you peel off and throw away. EMSAM, on the other hand, has the name printed all over the patch itself. Anyone standing within a couple of feet of me can clearly read the word "EMSAM" printed again and again on the face of the patch. All they have to do is Google the name and my most personal secrets start to be revealed. It's not a big problem in the winter, but my patch placement has to be a lot more creative in the summer months if I am to maintain any privacy and discretion.

What the hell were they thinking over there in Somerville? I might as well be wearing a shirt that says, "Ask Me About My EMSAM." I am currently working on some kind of totally outrageous lie of a story. Hmmmmm. Creative lying to avoid embarassment. Hmmmm. Bwahahahaha!

Exactly as it appears

Sometimes a bad mood is just a bad mood. Sometimes fatigue is just fatigue and sleeplessness is nothing more than a hormonal hiccup.

This is one of the many pitfalls of Bipolar Disorder. Once people know, they tend to assume that any anomaly of emotion or behavior must be the disorder talking. Experiencing normal mood fluctuations, frustration, bad days, or even a fit of the giggles no longer goes unobserved without judgment and analysis. Somehow, having this disorder means "normal" just stops being taken into consideration.

Knowing this, realizing it will always be this way, makes me very sad. But not, you know, sad. No, really, I'm not being argumentative. Stop looking at me that way. Can't I just feel sad once in awhile? Oh, leave me alone. No, I'm not self-isolating. Yes, I toook my meds, you ass. Pass the Xanax.

It's like that.

Calendar reality

I have a headache. I get headaches a lot. Tonight's headache had me reclining on the couch, a position I usually avoid because it invites a face full of stinky dog breath and the uncomfortable abdominal pressure that results from having a 15-pound cat atop what it believes is squishy, heated furniture (that sometimes dispenses food).

My right temple was pulsing to the point that I worried my eyeball would pop out of the socket. I tried to distract myself with thinking. Thinking. Thinking. I'm so good at it, yet it rarely turns out well.

I opened my eyes in a burst of panic. My husband's birthday is Saturday. When did that creep up on me? I have no idea what gift to give him. You would think that when you're married to someone, knowing what to do for his birthday would be intuitive, but it's not.

This thought led me to the anxiety-ridden realization that Christmas is like a month away. Again? Already? There are just so many people I'm not really interested in shopping for, and yet I struggle under the burden of expectation. I would bake cookies or pumpkin bread, but that would require, well, cooking. In a kitchen.

Ah, the holidays loom. The festive spending and sprinkling of credit card debt, the manufactured charm of winter scenes (who, exactly, has these charming winter moments?), the anxiety, the pressure, the complete lack of imagination that makes itself so obvious in gifts randomly chosen. I continue to be bombarded with catalogs from Omaha Steaks and Honeybaked Ham. No vegetarian can really articulate the special joy of leafing through page after page of glossy, full-color photos of meat. The Wolferman's English Muffin catalog, on the other hand, is nothing short of carbohydrate porn.

I don't want anything for Christmas. Every year I tell my family and boss this explicit request. Give me nothing, please. The greatest gift would be to stop the madness of feigned holiday generosity. Donate money to charity instead. Still, they cannot overcome the sense of obligation that forces them to buy Christmas presents. Lots of them. It is so unnecessary and so insincere.

I feel forced to reciprocate. That means a whole lot of shopping in the next 25 days (I have to ship it all, too).

In the meantime, though, I need to figure out what the hell I'm going to do for my husband's birthday on Saturday. He deserves better, no matter what I come up with. That I know for sure.

I just want to sleep

Sleep. I just want to sleep. I realize it's my lot in life as an American to be sleep deprived, but this is beyond reasonable. I suppose.

Here's the thing. When I don't sleep, I get cranky. When I get cranky, I say whatever pops into my head because I'm too tired to put in the effort to filter the appropriate from the offensive, but especially the gray areas in between that really require self-monitoring.

Sleep. It's a good thing.

At least I'm not psychotic.

Random thoughts

If I don't get some sleep soon, I am going to crack and have some sort of mental break. Most likely, I will achieve previously unwitnessed levels of extreme bitchiness.

I would rather be anorexic than fat. Anorexic people get sympathy and are approached with concern. Fat people get ridiculed. And anorexics get to be thin. As a society, we value discipline and self-control, and aren't those really the core issues of body image?

The Spaghetti Monster is getting serious discussion in theological circles. If that doesn't rock, I don't know what does.

I have to go to the worst public housing center in the city today. I can only believe that with my extreme bitch face on, nobody is going to fuck with me.

I've been faithful to my exercise research study workout schedule and dietary guidelines. My reward? I gained a pound. I hate my body.

A study released today reveals that one in six U.S. drivers would fail their driver's test if they took it today. Only one in six? I think GMAC needs to check its math.

Witness

I dreamed of my death and it was murder. It wasn’t a dream while sleeping, but a vision, striking in its clarity, that appeared in my field of sight, external and internal simultaneously. My eyes were filled with the scene.

I was there on the east side of the city, early evening, when the night is dark but not so dense as to feel as though it had depth. My body was face up on the sidewalk, just to the edge of the streetlight’s focus. Right arm above my head, left arm slightly twisted back, resting against the dirty sidewalk. Knees bent, pointing to the right, one shoe on, one slipped off as if it had been left behind when I fell, leaving five of my toes exposed to the cold night coming in.

My purse was still slung over my shoulder and across my chest, now standing up against my side. By my upper wrist, a thin trickle of blood branched off from the large pool of glossy deep darkness spreading out from the back of my head.

Shot. I had been shot while walking to my car in this gritty neighborhood where I came to do in-home visits with women from some of the most violent places on earth. They feel safe here. Everything is relative.

The shooter was long gone, having missed his intended target, who also had fled the street.

I saw my body in the black cotton T-shirt dress and silk tiger-print scarf I wore to work. Where was my book bag? I couldn’t see it, even though I saw the whole scene from directly above—a bird’s-eye view in reverse, a spiral going slowly up instead of spinning down into a clearer focus. I saw myself from 20 feet up, and then farther, and then looked away for just the tiniest fraction of a second and the scene was gone.

It was so real, but I was not unnerved by the scene that had billowed and spread out to take over my field of vision. I was dead by someone else’s hand, but I felt no pain, no fear. I was gone.

It's happening again

It's showtime. It's time to call on those coping resources, May. You need to sort out the real and the fictional reactions in your brain, the rational and the chemically sparked. Take a deep breath, stay aware. Don't get pulled into the dark side of bipolar management. You aren't doing anything wrong, you can only control so much of what is coming, but...you can be aware, bite your tongue, and above all else, you must rely on the data. Are you reacting to what is really happening? Are threats real or perceived? Look at the data, May. Don't let yourself react before you have monitored your own status.

Lisa said this would happen. She's been popping red flag warnings around my psyche for weeks, mostly because I am more than willing to overlook the obvious in situations like this--especially if it means slowing down. Slowing down means I'm sick. Slowing down means I can't keep up. Slowing down means I'm losing and nobody else is going to lag behind to nudge me along. I can't cut back, slow down, nurture myself blah, blah, blah. It only reminds me that I am so terribly defective and afflicted with something that is incomprehensible to anyone who doesn't have it.

Anxiety. I need to analyze the anxiety. The anxiety is coming from inside. Why am I anxious? Biological: Not enough down time, perceived inability to excel (I have to excel so that if I slip back, I'm still where most people are at "normal"), lack of sleep, time change, daylight slipping off to spend the winter south of the Equator, absorbing the anxiety of others, feeling totally overwhelmed by work with no end in sight and no option to delegate. Fear of failure. Fear of making a mistake. Fear of my mood tanking or of misinterpreting the words, actions, or even demeanor of those around me. I'm a little bit paranoid, and that's often the start of melting down and not keeping my misfiring neurons together. Crap. Paranoia. It's a big red flag flapping right in my face.

I hate it when I can't keep up. I feel like I can't keep up because it's hard to think straight when you don't sleep very much. I am not allowed to fail or fall behind at work. I'm just not, and no matter what my boss says, she lies. She says one thing and demands another. She cuts me no slack. Her definition of being accommodating is that I have a job in spite of having times when I can't be super dooper over-achieving May. I should have come in as a far more mediocre performer and then I wouldn't be held to such a high standard. I am not allowed to fall behind. I'm being judged all the time, not just by those I work with, but by the larger community that works with my program. Back off, people. It's stressing me out.

How the brain goes awry: A coworker says of our shared space, "I need more storage. Can we work together to figure out a way to make more room so both of us have a place for things?" What I heard: "You're an inconsiderate space hog who has taken all of the storage, leaving no place for my things. I work in this space, but you've claimed every corner for yourself. Something of mine got stolen because it was left out in plain view and that's your fault because I had no place to put my things away." Deeper issue: I hate sharing my work space and I do so with resentment, but I am still capable of playing nice. Nagging thought: I was there first. By a lot.

I know I'm falling behind rapidly at work. This is not BP-related, it's just work volume and my occasional incompetence. I am one person doing far more work than the position requires as it is outlined on paper. I don't live on paper and neither does my job. When my brain gets full, it...just...stops...working. "Where is that report, May? Laura needed it yesterday." Heard: "You screw-up slacker. How dare you take a sick day when you had work due? Laura is freaking out and it's all your fault, you irresponsible fuck up. You only care about yourself, and this is one more example of that. I come in when I have a fever. What makes you so special that staying home sick is appropriate?? It's only appropriate for other people, and maybe for me when I need it. Take a sick day when your work is finished." That, ladies and gentlemen, is the bipolar brain in its finest moment, rerouting input and letting the amygdala direct the neuronal traffic into all of the wrong transmitters. Can I stop it from happening? Is it just that I should take a long, deep breath of "rational?"If I could, would I down $600 worth of pharmaceuticals every month? The most I can do is step back, analyze, and compare my reactions to the data before me. Where paranoia surfaces, big, big trouble is usually coming.

The smallest mention of my shortcomings or tiniest misstep resonates in my brain like a frontal attack. It is a horrible, frightening feeling because although I can analyze the data, I can't avoid the initial reaction. These interpretations spark an inner dialogue that grows and swells and becomes a deafening crush of rapid thoughts that won't quiet themselves, leaving my brain unavailable to tend to the other tasks of living and functioning in the real world. How the FUCK do people like my boss conclude that this nonsense is even remotely voluntary, a conscious choice? No. The conscious part lays in trying to mitigate whatever behavior surfaces in an inappropriate way. Nobody sees this. They only see the inappropriate reaction without consideration for why it's there in the first place. They know if they don't like my mood or what I say or do, well, it is obviously meant as an insult directed toward them. They don't realize that they are so insignificant to me when I'm cycling, I couldn't work up the intellectual effort to consciously insult anyone. People are so self-centered. I am struggling to keep my brain straight, but they only feel indignance when I don't fit the parameters of their expectations.

I feel short of breath. Is it my asthma? Is it my anxiety? Is it that I'm subconsciously trying to stop myself from breathing in another thought, another piece of data that I have process before I can feel safe in producing a reaction?

I will rely on the data. I will compare my thoughts and reactions to the external events that trigger them. I will step carefully. I will pray to the cosmic forces to help me keep my thoughts to myslef, those snakes and lizards that slide so easily past my lips to shock those around me. I will watch my mouth. Better yet, I think I'll just keep my mouth shut for awhile while I try to convince myself that nobody is plotting against me.

Let it pass. Let it pass. Let is pass. Please, let it just pass.

Life should not require this much thought. Self-monitoring is perhaps the most exhausting mental exercise of all.

Talk to me

It's 1:30 in the morning, and I have nothing else to do, so I changed the comments setting on this blog. You no longer need a gmail account to post comments, so it's much easier to use this Blogger feature. Wahoo. How exciting is that?