A week of lithium

I feel like I should be writing weird poetry now. Or a Nirvana song. I’m hardcore.

As it is, all I am is nauseous. So much for the art.

How I got manic depression

The chain of bad luck, the family curse, began generations before I was born. Ours is a dynasty washed in suffering, inexplicable sadness, insanity, suicide, and unnamed misery. If one were to draw my family tree, it would be a hangman’s tree, the symbol of final verdicts, not amenable to appeal. In the shadow portrait of the tree there would be, between branches, spectral wispy figures: ghosts. In the wind, snatches of colorful fabric would flutter, torn from the clothing of some sad soul or another during his last fall. Some of them were brilliant, mostly in the arts, but none were able to find peace. Their lives were as restless as their deaths, damaged on every front. Not one of them knew the name of his suffering.

I was born at the end of the 1970s, before the genetic revolution, when questions of nature versus nurture still were in the fields of philosophy, or religion, or sociology. “Bad blood,” said the neighbors, but it was an expression, not a scientific statement.

I was the first-born daughter to the village’s “crazy family,” and the only reality I knew was the capricious changes in moods that seemingly blew in through the windows of our house, sweeping up with them my father and bringing in attacks of rage, of interminable sadness. Without the walls, I felt the eyes of the suburb upon us, waiting to see the next incident that would provide them with gossip for the coming week. Perhaps my father would sob in a bar, or my grandmother would shoot out the tires of someone who yelled at her in the street. And between them, I stood: the child prodigy at school, the genius, the girl who could do anything, afraid to ever be angry or disagree, afraid to show anything that could be construed as reflecting the fiery temper in her blood.

Childhood was spent in the shadow of that wild beast, the primitive nightmare monster that ceaselessly stalked my family, breathing hotly down our backs, generation after generation. I promised myself one thing; a singular, obsessive, unwavering vision guided me: I would not be like them when I grew up.

They flew into rages for no reason? I would never get mad. They got into trouble at work? I would be the best student ever. They were weird artists who dove deep into themselves to bring back strange, dark creations, full of wicked humor? I would give up writing and choose the most conservative, stable, boring, serious, and above all, respectable career that I could. To have a dignified life, to behave responsibly, was all I ever wanted. While the monster chased after me, I chased an image of what I saw as salvation with no less tenacity.

After my early successes, nothing seemed impossible. I could break the hand of fate itself. Not everything was preordained in those naive days. If I had known the name of the demon then, however, maybe I would have identified this “can do anything” attitude, the fanatic energy in which I threw myself into everything, the fiery stubbornness, not as proof that I would manage to escape, but rather as what they really were: signs that the demon had already cast its eye on me. Bad omens.

Because I didn’t know the name of the demon or its nature, I didn’t know that it was coming for me. I went through life like the girl through the fairy-tale woods, deaf to the snarls of the monster at my back, blind to his shining white teeth, not through bravery but rather through the firm belief in her own invincibility, granted by her tremendous force of will. I went out into the world convinced that I could conquer any challenge, bend anything to my own will. For a while, the universe agreed with me, and put up no wall I couldn’t break through, no mountain insurmountable. Sooner or later, I got everything I ever wanted – or at least everything that depended on my will and work.

But the beast was always there on the horizon, not impressed by my bravado. When I was still tenderly young, I started to storm from within. The tectonic plates of my inner geography began to shift around my boiling core. From year to year, all the while keeping up outside appearances, I became more and more aware that the beast had tasted my blood, that he was already in full pursuit.

When it got close enough for me to see its fangs, I did the one thing that I could with a demon breathing down my back: I ran. In shock and fear, I fled. By then, I knew that I couldn’t save my family, that that particular success, despite being deeply desired, was beyond me. The monster had its claws too deep in their flesh and lives, even before I was born. I spread wings of terror and flew. I hid in jungles that spoke in strange languages, hoping the demon would be confused. I wandered lost in the comforting desert. I crossed continents and roiling sea like a child stuck in a dream in which a primordial creature chases and chases and chases, unbound by the laws of physics, crashing after her through walls and over mountains. I fled, my heart in my throat.

The central theme of my youth was fleeing. I didn’t know that by the time I started to run, it was already too late.

But I did manage to escape for a few good years. Any time I felt the uneasiness, the inner violence, begin to well up, I tore up roots and ran again. Like any journey with no destination, my flight brought me unexpected treasures on the way: the poetry of Ruben Dario, the chance to develop my ability to adapt to any situation, adventure, bravery, and even this city I love. But I still didn’t know the nature of my pursuer. I did not know that it was already with me, in my genes, every step of the way. It had known how to find me since before I was born.

* * *

I tried so hard to run from them, to be saner than them, to be better than them – and I loathe those judgmental expressions for what they express about me, that deep down I thought myself better than them. But it is the ugly truth. Hubris will always lead to downfall. Always.

Naturally, the genetics did catch up in the end. Today, after my long, failed odyssey, I find myself alone, at the end of a dead-end street. I have no other option than to turn around, breathe deep, and try to live with my inheritance, the monster that lives in my mind. For the first time, the unstoppable girl, who could find a solution to any problem, who could do the impossible, cannot find her way out. In the marrow of my bones, I knew this was how it would end. I think I knew before I even started running. Now, all that remains for me to do is to surrender to what was decided before I came into the world. Like a wounded animal, all that remains for me is the instinctual desire to retreat, to go to a secluded corner, head down in defeat and mourning, and lick my wounds in secret, ashamed at my own weakness.

Despite this, I torture myself in the early sleepless hours of the morning, seeking my fatal mistake. It is hard to believe that I am totally innocent in the story. What could I have done differently? When should I have started running? When I was 14, it was already too late. At ten? Maybe that would have been early enough, but at that age, the monster was something wholly external, something that lived with my family. I didn’t know it was coming for me, that I was marked. When was that magic moment I missed, when I could have identified it, but still gotten out in time?

Or, as my hindsight torture continues, maybe I ran to the wrong place. Maybe I should have run west instead of east, to the sun-drenched islands in the South Pacific. Plenty of demon-chased people of all kinds have found a measure of sanctuary there. Perhaps demons don’t thrive in certain latitudes.

Or maybe the error was in running at all, trying be different. Maybe I should have just accepted the inevitability of the demon catching me, and gone into a more creative field, instead of trying to escape the demon by disguising myself in responsibility, rationality. At least in an artistic field – writing, the theater, there are many strange souls with demons in them. There, they are used to them, and know some of the enchantments and spells to calm the beasts.

Or maybe trying to escape was a bad idea. Maybe I should have fought from the beginning – diet, vitamins, exercise, sleep. Maybe I should have tried to learn more about what had happened generation after generation. Instead of calling it misery, sadness, desperation, exuberance, bad blood, demon, maybe I should have sought out its true name: manic-depression, and by knowing its name, obtained some kind of power over it, or a better weapon with which to slay the dragon, or even knowledge that would have helped me plan a better escape. But even today that is far off; I cannot say the name aloud, and when someone else says it, a wave of nausea and tremors wash over me, and a sharp desire to silence the speaker. I fear that calling its true name will somehow conjure it, call it into being. Clearly, the power of the true name is still in its hands, not mine. I am no closer to being able to wield the magic of the name than I was when I didn’t even know it. I cannot escape the feeling that if I could only remove the terrible power of the name, make it stop being able to freeze my blood, then maybe I could soften its influence over me, come to know it, and, maybe, come to some kind of peace with it living in my mind.

But the demon and I, we have no such cease-fire, and I am as tortured by it as by the words of the doctor who saw me this week, who pointed out damage to functions that I had hardly noticed, but that I cannot deny. I know that they weren’t there before, that they are now. How much of me has the monster eaten? How much more until it is satisfied? Will it leave me enough to live? To remain me? Enough to destroy my life?

And if all of that isn’t enough to keep me up at night, there is one more thing that I know deep down: that someday – and I’m not saying soon and I’m not saying that I won’t resist – but someday, this could certainly kill me. I think I have known that for a long, long time, perhaps, since before I even knew I was caught. In good moments, I am full of life and plans, and I see a long future and a million things I want to do. But it could come to pass that I won’t see any of them. I cannot predict whether it will be in the fire of mania, in my shipwreck in the middle of the Aegean sea, sunken by a storm that I entered in ecstasy, or in the silent, slowly crushing snowdrift of sadness. But the possibility, even on the days when the demon is silent, hovers over everything I do.

I wish I could go back to the child I once was, before the demon came to live inside me and broke my…my what? My sanity? My life? My will? My freedom? I want to go back in time and try again to identify the mistake, the misstep, the fatal juncture where I turned wrongly, the unidentified moment when I lost the battle. I want to know where, where, where I failed. More than anything, I want to be once again the girl who knew no boundaries, who challenged the very stars when they aligned against her, who thought she had a chance to beat her fate.

Medication decisions

The good post will come later, when I can sit down and translate. This is about the details of the medication possibilities offered me.

When I finally went to the shrink, the appointment was ok, but, as I suspected, he wants me to take lithium. Well, it wasn’t that simple, he gave me a shitload of options, but nothing I really hadn’t looked up myself, and out of all of them, I think lithium is best. I think I decided that before I even went in.

 

I just feel sort of sick about the whole thing. It was really different to know and have decided in my head than the real moment when he put the box of lithium in my hand. Vitamin L.

 

It sort of makes me want to kill myself that I get the official BIPOLAR, TAKE LITHIUM; NO FOOLING YOURSELF ANYMORE diagnosis in the same week as Britney Spears.

 

Another thing that sort of freaked me out is that he thought that ADHD is a huge part of the problem. Now, I can see why he thinks that. I am increasingly scattered in recent years. It’s worse when I’m in his office because that makes me nervous. But I am 100% sure I didn’t have ADD as a kid. I used to be able to sit and read for like 12 hours straight. I can’t anymore, and have increasing difficulty studying, just cannot sit and do it. But I’m sure it’s not ADD, I never had anything like that, no trouble in school, etc.

 

So I’m afraid that this is wrecking some new part of my brain…that it is getting worse, that I’m losing function. I guess I will talk to him about that maybe next time. The natural history of the disease. Am I going to end up seriously impaired? I think that from what I can tell, psychiatrists are really bad at doing research on large numbers of people – and they have no good answer. A lot of papers out there say, oh, they get worse over time, disabling, etc. BUT now that I have seen how drug company research is done, a lot of the times they make that case to say, “Here, look, it’s horrible, they need to BUY MORE OF OUR DRUGS or something HORRIBLE WILL HAPPEN.”

 

So here are the drug options he put down, and my ideas about them. I ran this by Jake for another opinion…

 

1. This was my idea – another tricyclic, similar to the one that I am taking that is doing me the sunburn. He didn’t know if that would do the same sunburn, and as far as I can tell, and I’ve looked in medical lit, no one knows. Possibly, in the pharmacist literature, someone somewhere has written what exact breakdown product of the drug that does that is, and if it is exactly the same for all of the class, or I can maybe gain a few years of not having to take a mood stabilizer by using a different drug and letting its breakdown product build up in my skin and give me these burns, and then even maybe be able to switch back to the other one and let it build up again.

 

He was not crazy about this idea, because he said, well, look, you’ve been manic a couple of times on it, and depressed more than that, so you’d probably be better off with something else.

 

Anyway, we left that an open option. He is going to see if he can get an answer, and Jake’s wife is a pharmacist, and through her he knows this clinical pharmacist who only works with psych drugs, and if anyone in the world will know the answer to that, he will…

 

So I talked to the super pharmacist and he also didn’t have an answer about whether another will burn me too. (This was a horrible conversation for a lot of reasons, sort of a weird guy to talk to, basically told me I was going to crash and burn.)

 

2. Lamotrigine. This is a new drug from the mid 1990s that started as an epilepsy drug that is also now widely used as a mood stabilizer. Unfortunately, a while back, I found out about a clinical trial sponsored by the company where they tried it in a different disease, and they certainly exaggerated the raw data, spun the statistics to get the drug licensed to be sold for that disease. I’m not naive, I know that this is pretty standard in medicine, and I know that every drug company does that, but I happened to hear about this one and pretty much want nothing to do with it. So I ruled that out. Also, very very rarely, it can cause a horrible skin reaction that can even be fatal. The pictures of that are bad enough to also turn me off.

 

3. Valproate. Another drug from around the same time as lamotrigine, similar concept, causes weight gain (extreme), and rarely, makes your liver die. I am not as strongly against this as lamotrigine, but I also suspect it isn’t as effective as it is made out to be.

 

4. Lithium – since it is basically an element (in salt form), no one can patent it or make any money off of it. It has been around for almost 100 years in present form. It has been widely studied. In what I can see from the literature, it is probably the most effective drug out there, but has lots of problems. It can wreck your kidneys. It can wreck your thyroid. It makes you pee a lot, possibly gain weight, retain water, and hands shake. Makes you nauseous. Gives you acne. Needs to be closely monitored because just a little bit too much is highly toxic. Needs to be closely monitored on the kidney and thyroid thing. But – for people who can stand it, it is effective, cheap, and WELL STUDIED. I mean, I don’t think they are going to discover that it makes your brain catch on fire or anything like that. This is always a risk with new drugs.

 

It has sort of a terrible reputation, but I don’t really think it’s fair. A lot of drug company hype is to say, “What we have is bad, what we are selling now is so much better.” Well, just because they haven’t discovered all the bad stuff of what they are selling doesn’t mean it ain’t there. And I’d rather know exactly what it can do bad than just not know and take something else hoping for the best.

 

My fear with lithium is that it will take away my enthusiasm – how I can dive into anything and get so excited and feel alive. I won’t take up celestial navigation and astronomy and sewing and everything with as much zeal. Some of the people on the discussion board told me that that is more of a myth than true. It does stop the mood swings, but not the underlying personality traits that go with them.

 

 

Also, are these side effects worse than the ones I am having with the tricyclic? The burning under any light and having to live in darkness? The inability to stand up for more than a minute without fainting? The hunger and weight gain? The continuous heart rate of 140? So I’ll fuck up some kidneys and thyroid instead of heart and gut. Is it worse?

 

And here’s just the real problem for me, and I know this is idiotic, but, the stigma. Vitamin L. I can go get the labs done by going to a lab and paying cash under a fake name, but my family doc, who needs to order the EKGs, the kidney stuff, thyroid stuff etc…is anal about writing things down right in files…would write down something like, “Ordered for followup for lithium treatment” – and the way things are here, anyone swipes my health insurance card and they see that immediately. As is, I can’t even go to the gynecologist without getting treated like a crazy person (which, I guess, I am, so fair enough).

 

By the way, no one knows how any of those three work. So, no guesses by mechanism of action what might work.

 

5. Duloxetine (Cymbalta) – this is a new drug that is sort of like Effexor. It is like an SSRI but also works on noradrenaline, like the tricyclics, but is structurally unrelated. Serotonin and noradrenaline reuptake inhibitor. My big problem – it has been on the market for 2 years. Despite heavy marketing, to me, it doesn’t look like it does much more for people than Prozac or Paxil when I look at the published data, of which there is not much. Again, there is the issue of 2 years on the market, doesn’t look like a wonder drug to me, despite how they market it, and again, there is always the possibility of discovering that it makes your brain catch on fire, fall out your ears, or some other unexpected result. I pretty much ruled this out. Jake said he wouldn’t go near it either.

 

6. What the shrink really wants – lithium + some antidepressant or other. I’m against this, just because only the tricyclics didn’t make me stupid, and apparently I can’t take them, or if I can take a different one, why the lithium then? And if the lithium will curb the moods, why the antidepressant? Also, I’d rather not pump more chemicals into my poor, abused brain than necessary.

At the very least, finally facing this a little more has been good in that when I woke up hysterical in the wee hours of the morning, as has been happening for months now, I managed to write the outline for an essay about this…it really flowed like things do when I write well, I think I am going to go with the metaphor that came to me in the night. I think it’s a good metaphor, I was so goddamned determined not to end up like them, but I didn’t know the name of the monster that was chasing me. Invoke the magic of knowing something’s name.

Vitamin L for me

I will post a longer update later. I actually wrote a fairly long piece about how this got me, but not in English. I will try to translate it some other time.

Leave me a comment or a mail if all the details of the shrink appointment are interesting. I wrote some of them in an email that I can easily copy here. I also wrote down the variety of options of meds that were offered, along with my thoughts on each. I can copy that here if it is interesting (and may do it even if it isn’t). I have no idea whether that is or not. Sometimes I like to read blogs to see what other people have to say about certain meds, because, let’s face it, they take them and the shrinks don’t. If anyone wants to know pretty much all the options and my personal thoughts on them, fine.

In the meantime, I am two days into vitamin L. I feel horrible physically (stomach, taste in mouth, feel like all my nerves got stung or something), and also am – joy – hypomanic. Hence the staying up all last night writing. I need to go back and clean up what I wrote, because at three AM I just wanted to finish writing, so that I could say I at least did something. I finally finished around 8:30 AM. I’m so scattered that it took me about a day and a half to write three pages. I think that while it won’t stand alone as an essay, there are some bits I will be able to pull out of it for sometime in the future.

Then, I tried to sleep, maybe made it for an hour of broken sleep, then got back up racing again to fix more things in what I wrote. A second read-through, also with an eye to pull out any details that might seem too manic – things that fit together because of sounds or overly loose association. I have been trying to sleep since, since I have to work from 4 to 10 PM tonight, and will be even more physically miserable. I am unable to eat. Probably will lose some weight on this one, at least until I get more used to it. Not sure how I feel about that. I was liking my round, woman’s body. And I finally got clothes that fit it. Whatever, though. If I can be sane, it’s worth it.

And this is how I lose my mind

The appointment is tomorrow. This waiting is driving me crazy. I am feeling both giddy and silly, never a good sign, and not sleeping. Physically, I feel horrific from not having enough of my good drugs in me.

And this morning, I woke up and needed to consult something I wrote a couple of years ago, written in a moment when I felt good, had everything figured out. It was a moment of peace and clarity, and I made sure to record every detail, so that later, I wouldn’t lose it, the details wouldn’t get erased, or changed over time.

And now I can’t find the fucking thing. I lost the “in case of emergency, break glass” box that I had left for myself. My message in a bottle to myself. How could I lose this? I can’t even remember where it was supposed to be.

I keep a lot of diaries, idea notebooks, draft books, mostly just randomly opening whichever is closest to fill in the details before I forget. One is always by the side of the bed, with a pen at the ready.

This particular version of “How to Save My Own Life” came from a dream, a dream that gave me great peace, changed my life, taught me a great lesson. I wrote it down, to not forget the details. I found one version of me rewriting it on the computer, but it isn’t the full one. Even this shadow version reminded me of details I had forgotten…big things.

I have been tearing the place apart all morning, and the writing appears in none of the notebooks I thought it did. They all don’t even contain writing from the same time period. How could this have vanished? I don’t even remember having another, yet unfound, notebook that it might be in.

I am not sure which part of this means that I am losing my mind: that I lost such an important talisman, can’t remember where I inscribed it, or that I needed it in the first place because I couldn’t remember even such a critical piece on my own, or that I ascribe such significance to its loss.  Or that this physical withdrawal is so bad that I cannot keep looking for it without getting dizzy and out of breath, that knowing that it is so crucial, I cannot keep seeking. Isn’t that the definition of giving up? Not being able to keep swimming toward your life raft? Knowing that what you need to survive is near, but being unable to reach it?

Making that psychiatrist appointment

I did it. It took me, depending how you look at it, either two weeks to do it, or a year. It has been a year since I have been really ok. I’ve been avoiding it, playing with it, messing with dosages and combinations alone, quitting when I get the side effects, starting again.

It was last January that things really started to fall apart. I think that back then I sort of backed off the meds, and then I fell into a depression so deep that…well, that nothing. I kept going to work and doing all the shit I always do. I was in a new department then, but one semi-friend had started there with me. He tried to shield me from as much as possible, took some of the more brutal work for himself, leaving me the easier assignments.  The new bosses, in that brutal jovial way that people who do what we do have of talking about illness, teased me that I should really consider an SSRI.

Then around February-March I was manic, fortunately at the time on a job assignment in New York, far away from where anyone could take notice or care. Blew some cash, but not much more. Managed, by not knowing anyone there, to stay out of drugs and too much trouble. A lonely little mini-breakdown, unwitnessed, except by a few befuddled employers.

Of course, I returned, 20 pounds lighter on a 1.50m frame, and promptly crashed into a two month depression, started taking a full dose again and living by night to keep from burning.

Which is what I have been doing since then. Except that now I’m burning under artificial light, too.  So I can’t even work at night.

And I am starting a new job in April or May, and I need to be sane for that.

So, after one year, or two weeks, I called Old Shrink, the only number that I still had that was working was his home number, because the phone system here added more digits to the phone number system since I was last there.

I was shaking while making the call, though trying to keep my voice neutral. I managed to schedule for sometime next week, but by the end, I had to just get off the phone. I was barely hanging on, barely keeping my voice from cracking, and as I hung up, I just crumpled. Not even tears, just a giving way, giving up.

It’s funny, I can learn to pilot around the world, run the streets of New York as easily as navigate a Sandinista jungle, plunge a knife into a soft abdomen, move countries at the drop of a hat with no difficulty picking up right where I left off, and yet, this brought me to my knees.

And I don’t even know why.