Milligrams

Today I thought I might tackle a big topic. The stuff the spouses of
people with any illness – mental or otherwise – are often afraid to
admit to themselves, never mind to anyone else.

As spouse of a sick person, people often expect you to be saintly,
accepting, loving, patient. But I have often been sad, angry,
frustrated, self-pitying, sorry, guilty, confused, furious, and
terrified. All at once. Sometimes for months, maybe years, on end.
Oh, also: overburdened, resentful, exhausted, and fearful of the
future.

His bipolar diagnosis, and the episodes, and everything else, took me
completely by surprise after we got married. I just thought he was a
little depressed, since my husband is amazingly great at pretending to
be OK. And, it turned out, just as frightened as I was.

At first I couldn’t talk to anyone about this. I was too terrified
and angry about this enormously hard thing that had happened to us.
But I’m ridiculously bad at concealing emotions – I’m frequently told
that my face reflects my every flickering thought. (I almost never
lie, for this reason.) So he would see what I was feeling, and
misinterpret it in his bipolar haze, and this plus everything else
severely strained our relationship.

Who to talk to about these negative emotions? At first, and for a long
time, no one at all. Lots of stewing and brewing. After a while:

- Can’t worry my family with this stuff. These days I do give them a
brief overview, but if I go into too much detail I’m worried that my
elderly parents will start treating my husband like he’s insane or a
toddler. Maybe talking to him in VERY LOUD VOICES. Plus, they’re
frantic worriers, and what good would more worrying do my 85-year-old
father, who has terrible back problems, cancer, arthritis, and
glaucoma? None. Also, they’re very religious, and as I’ve learned,
in their case that means negative emotions toward (especially the
male) spouse are taboo. They would prefer me to be saintly.

- No point in telling his family, who are a lot younger, but don’t
want to hear it. I was really disappointed by this, but when I try to
talk to them they cut the conversation off. I think that above all,
they don’t want to accept that their son is ill. Easier to tell
themselves that I’m making it all up. And that if there’s any grain
of truth to what I’m saying, of course exaggerated beyond all
reckoning, then it’s my problem and not theirs. (I’m pretty angry
with them, in case you’re wondering. They’ve been horrible.) They’ve
made it very, very clear that they would prefer me to be saintly.

- None of this can be shared with friends for fear his employers might
hear of it. We live in New York, so we’re professionally connected to
most of our friends.

Who does that leave? Old friends. I’ve lost touch with most of my
college friend because they live in another country. His old friends?
They’re very fond of my husband, so they would definitely prefer me to
be saintly. Just not the right people to tell.

So we’re both seeing therapists. Obviously, he needs to see one, and
I needed an outlet.

Over the past year, I’ve been doing my best to describe my experience
to him, acknowledging all of the above. Because he senses, of course,
how this affects me and what I’m feeling. Better to discuss than let
it brew and continue the misunderstandings.

How do you tell the person you love, who’s unstable and unwell, that
sometimes he’s a huge burden that drives you to tears? By very, very
carefully avoiding blame and accusations, and doing it little by
little. It turned out that this was a really good move, because
that’s how we started working out the compromises and solutions that
both of us can live with.

I’ve seen advice from professional counselors advising spouses to wait
for a stable period to bring this stuff up, but I think that’s really
stupid. “Oh, you’re well, honey. I’m so glad. Now here are all the
negative things I’ve been feeling for the past X months.” What a
great friendship that would be. My attempts at waiting for the right
moment didn’t help us at all.

It looks like the only way we can manage this is by watching for and
recognizing the moments when he can’t work out what’s real and what’s
distorted by bipolar disorder; at those times he has to depend on me
to help him sort it out, which seems to be really helpful. But he has
to be able to trust me for that, and vice versa, so very little can be
hidden between us.

Sainthood is not an option.

I find myself in a job I don’t like and yes, I do blame my illness for it. Because my illness severely impacts my self-image, I never (or hardly ever) reach for the brass ring — and other cliches relating to achievement. And today I learned of an old friend getting a very high-up position somewhere, and I felt very small in my small job. I had to reach for MLK’s speech of Oct 26, 1967, to keep me going:

If it falls to your lot to be a street sweeper, sweep streets like Michelangelo painted pictures, sweep streets like Beethoven composed music, sweep streets like Leontyne Price sings before the Metropolitan Opera. Sweep streets like Shakespeare wrote poetry. Sweep streets so well that all the hosts of heaven and earth will have to pause and say: Here lived a great street sweeper who swept his job well. If you can’t be a pine at the top of the hill, be a shrub in the valley. But be the best little shrub on the side of the hill. 

Be a bush if you can’t be a tree. If you can’t be a highway, just be a trail. If you can’t be a sun, be a star. For it isn’t by size that you win or fail. Be the best of whatever you are.

And still, with those words in mind, I had trouble making it through the day. I didn’t want to be the best “street sweeper,” because despair had set in. And despair is the one mood that makes everything else impossible. I wanted to be anywhere else but where I was; I didn’t want to stay there and be the best. I stood up from my desk and went to my coworkers, looked in their eyes for some indication that they were going through the same thing I was. I saw nothing, because I was so wrapped up in my own headspace I couldn’t see through to theirs. And so I went back to work, somewhat thankful that I’m well enough to work in the first place, and I made it through the day.

I write fiction in the mornings before I go to work, which requires me to go to bed as early as I possibly can (which is where the clonazepam helps), and I think the same thing there: if I’m going to be a shrub on the mountainside of literature, I should be the best shrub I can possibly be.

I’ve been hearing a lot lately about the “despair gene.” It’s something I haven’t looked into, fearing the worst: that some have it and can’t (obviously) get rid of it. The Cardinal sin comes in waves, sometimes leaving me alone for weeks at a stretch, sometimes waving over me several times a day: no-good, worthless, pointless. But I look back at my categories and I understand that there’s lots of thinking I’m not allowed to do.

Go to bed, get up, start all over again.

Today he woke up in semi-agitated state. It wasn’t bad, but he was
impatient, a bit grumpy, and easily frustrated. His mind is elsewhere,
electricity buzzing through his circuits, and simple household jobs
become projects requiring coaching and extra patience from me.

We had an episode today over hanging a mirror that would have been
hilarious if only we hadn’t been living it. First, it was the world’s
most complicated mirror to hang, with little hooks spaced unevenly in
inaccessible spots on the back. In addition, no lines in our
apartment are plumb, so it was really hard to figure out what
“straight” meant, in the circumstances – straight as compared to what?
And I’m naturally clumsy.

I think it would have been a lot easier if his medication were
working, but it hasn’t been since he cut 5 mg from his Abilify dosage,
so he didn’t have the patience to sit calmly and figure it out.
There’s a crookedly-hung utensil rack on the wall in our kitchen that
reminds me every day that I didn’t handle him well that time. I walked
away and let him figure things out for himself, not wanting to deal
with his temper, but that’s not an option. I have to help.

So we made at least five attempts, dealing not only with the
mathematical problems of measurements but also the obstacle of his
bipolar-induced impatience, which both of us fought in different ways.
We succeeded. There’s now a bunch of holes in the plaster that are
concealed behind the mirror, which is hung higher than we’d like
because we’d pretty much wrecked the wall. But it’s more or less
straight, and the project is done.

Throughout this, like usual when he’s fighting this particular aspect
of bipolar disorder, I had to try to remain calm and optimistic. I
can’t get frustrated because I have to help him fight against the
downward spiral that bipolar disorder would otherwise drag him down
to. In his worst days, back before the medication, before we knew
what was going on, and before I had figured out what my role was in
this battle, this alone could have set him off, perhaps on a two- or
three-day introspective black mood about how nothing was going right
in his life. Now that tendency is not as pronounced, but the thought
pattern is still there if he slips.

So sometimes I hear myself saying the weirdest freaking things. I’m
honestly a bit shocked to hear myself saying, “It’s all gonna be OK,
don’t worry,” and “Tomorrow’s another day,” and “When life hands you
lemons …” Or, worse yet, singing upbeat songs to him: “Everything’s
gonna be alright now, everything’s gonna be all right!” Goofing
around, trying to pull him out of the blackness.

Because, when we first met, I thought that I was the moody,
introspective artist and he was the super stable one, but now I no
longer have that luxury, except when he’s really, really well, which
has only been two months out of the past … well, a very long time. It
turns out that I’m naturally optimistic, and comparatively resilient;
whatever I thought about myself in my 20s was flat-out wrong.

Life does very strange things to you, doesn’t it?

Today, by accident, when I was browsing through the apps on his phone
to find good ones to try out, I finally came across his blog. He’d
told me about it but had refused to let me read it. I read the whole
thing, and now he looks sort of embarrassed and proud at the same
time, and says that I was snooping.

I wasn’t, but whatever.

So he’s not exactly revealing much about himself here, clearly. (Umm,
paranoia, anyone?) I was thinking that if we posted his thoughts and
mine on the same entry each day, people might get a better idea of
what life is like once the bipolar diagnosis and demons enter a
couple’s life together.

Right from the outset, I’m going to say that our life together hasn’t
been easy. He is going to feel guilty the moment he reads that, and
start blaming himself for the worries and difficulties we’ve been
through, but he shouldn’t. I’ve come to terms with it, which is
something I’ll talk about another day. The person who is sick always
feels guilty about needing the help and attention, but I know he’d do
the same for me.

What he should know is that I read all the entries and some of them,
where he revealed a bit about himself, reminded me of why I love him
so much.

It’s a question I thought I’d answered for myself several times, but it keeps coming up. Because shining a light on it will make it all go away? Hardly. Partly because my current doctor is so disappointing. Mostly because I don’t know what I think about something until I’ve written about it. I write in order to think. These posts are tiny distillations of journal entries that run upwards of 1200 words, most of it more personal that I allow myself to get in here. But why tag myself and my time with the illness? Because it’s still new to me: I was diagnosed in June 2008, after many years of being labeled unipolar depressive. I didn’t blog back then, didn’t think I had anything to say. But this disease, and these drugs, have become so large a force in my life I can’t help but write my way through them toward some kind of understanding. Mostly, I discover questions that have been lurking just under the surface. And if you don’t know the question, then that nagging sense that something’s wrong will tug at you until it pulls you under. I blog about bipolar moods to keep my head above the water line.

So I’m nervous. I just popped a half milligram of clonazepam to help me come down from this nervous high. This morning I was sweating under my armpits like a madman. Well, I was a madman, nervous and anxious about nothing. The bipolar getting to me. An anxiety of no mood-quality whatsoever, it could have gone in any direction — despair, fear, self-hating, or upwards into a kind of mania. Turned out it went nowhere in particular, just an amorphous, cloudy feeling of disquiet. There are things I can’t describe very well: this feeling that everything’s not going to be all right and, at the same time, a teetering on the edge of believing the opposite. Just a kind word and I’m flip-flopping back into optimism. My wife came home and told me everything was OK and I believed her, believe her, even though my body is telling me something very different.

This morning I woke up with a chorus in my head, but each singer was singing a different song. One was literally a song, an instrumental rock piece that’s a little down and depressing. Another voice castigated me for not writing better, another told me there was no way I was going to write well this morning because I was too tired. Others had something to say about my day job and an email I got from an old friend describing how good his life is right now. This all turned on within seconds of regaining consciousness this morning. Pop. Like that it began, and didn’t let up until I got to the office and had my busy work to occupy me.

I sometimes wonder how other people wake up — do they immediately latch onto the most negative thoughts? Are their minds blissfully empty for a few seconds, attending only to themselves surfacing into wakefulness? Do some people wake without thoughts at all? Wouldn’t that be a gift, to wake up thinking only, “I’m lying in bed and now I’m starting to wake up?”

Or am I committing the sin of thinking other people have it easier than I do. Does everyone wake with concerns and fears haunting them, and am I simply unable to handle them? There’s no yardstick for this kind of emotion, and no discussion — who talks about what they’re thinking just when they wake? I want to know, what do people think?

I blame the computer. I almost wrote the internet, but it’s not only that. It’s also writing in a journal that keeps me from reading, from concentrating. I can spend hours in my journal, not making anything at all. Just writing compulsively. Writing about writing. But it’s certainly also the internet. (See Is Google Making Us Stupid?) All these distractions. I used to love to read, and I think my reading dropped off just as I started getting depressed and using the computer more — about 5 years ago (it feels like yesterday). It’s so hard to untangle these things from one another. What created what? What caused the reading deficit? Is it the medication, the depression, the computer use? The safe answer is “yes.” Yes to all three if they’re keeping one from concentrating.

On lithium I couldn’t concentrate. On Trileptal I was a joke — totally stoned out. Seroquel killed my ability to stand up straight, and gave me severe akathesia as well. I thought that Abilify was helping me to concentrate, but it’s not. I’m having a hell of a time concentrating for any length of time, and this pains me to no end. But maybe my doctor’s right: this is a good kind of pain, the pain of coming out of deep depression. Quoting Mary Karr, “If you live in the dark a long time and the sun comes out, you do not cross into it whistling.”

The shiny new gadgets — they’re always referred to as shiny — seduce in times of boredom. Not to say that all who love gadgetry are bored or boring people, but, like sports, electronics fill in life’s smaller gaps. Shopping for them as entertainment. I go to the tech section of the newspaper first, after the front page, because its news is so neutral. I always want something, a newer version of what I already have that works just fine. The blogs don’t help matters, and I say “help” because it’s an addiction like any other, concerning myself with tech well out of my needs. A harmless addiction, except when I’m hypomanic, as I’m trending now, and I spend hours on the internet, shopping for gadgets, reading reviews. They’re so full of promises of a more productive, smoother life. They promise an end to boredom, and boredom is the first sign that I’m getting hypomanic. That, and writing too much in my journal. Is 1200 words per day too much? I think so. So I look at the new Mac mouse, and buy it in my imagination over and over again. Juicy rationalizations bounce around my head like electrons circling the nucleus of my rational brain, clouding it, fuzzying the picture of reality. I want, I need.

Brad Sucks has been my go-to music for spells like the one I’ve been experiencing in the past three weeks (thanks to myself for lowering my Abilify!). He seems to get it. Anyway, his tracks are free and you can get them here. I particularly like Fixing My Brain and Borderline.

Enjoy.

I made a music video of Fixing My Brain using footage from Sam Fuller’s “Shock Corridor,” a fine film.