a heart pre-set to detonate

I was going to write about some article I read in The New York Times the other day, when a dear dear friend of mine sent me this poem by Rick Hilles, called "Flashlight Stories." It is a long, beautiful poem, but I will share the two parts that resonated with me the most:

9. The Temple

Before they even knew what
it could do to you, they pulled back
my mother’s lovely midnight hair,
a moon and its reflection rising
at each temple, two strong men
pinned her down, put electrodes there,
a pincher here—cold metal on teeth
on tongue—and fired up the furnace

to her brain: the shock, electricity,

shrugging through her body, oh, oh,
she told me she heard the woman in the bed
beside her moan, as if on fire, already bending
at the knees. She still hears the woman screaming
sometimes at night, the screaming wakes her
and she says, herself, "My God, it’s me!"

10. Alarm

By your thirtieth year they say
it should manifest. If not, in most cases,
you have been spared.

But there are exceptions.

Even two years beyond my third decade
the dormant, snaky coil of DNA
might hiss itself

awake, snap its distorted spine
and strike. But my mother says: Honey
as long as you can point to
a reason you feel a certain way

you don’t have what I have. And even now
I am afraid I feel the alarm about to go off in me,
the harried beating in my neck’s

carotid artery, the green branching veins

inside my wrists. See now, if you can’t feel it here,

the second hand ticking its true course,

a heart pre-set to detonate.


(You can read the whole poem online here.)

I am struck not only by the way Hilles uses language, but also how true part 10 rings. It's something I've tried to write about before, though certainly not so eloquently, and something that still haunts me, especially when I'm having a bad day and just want to listen to this song on repeat. Sometimes I think I have seven or eight more years till I am out of the woods, but now I realize that is naivete--just like thinking a diagnosis, having a name, would change everything. It didn't and age won't. But I wonder if you just learn to live with it or learn how not to be scared by that possibility.

I am reminded of Christina Applegate, and how she got a double mastectomy when she found out she had breast cancer in one breast and had tested positively for one of the BRCA genes. For as much as I hate uncertainty, I don't know that I would do something similar if anything were ever available for mental illness.

Not to say the loss of body parts is not a big deal, especially parts of you so much equivocated with femininity in our society (I don't know if I could get a mastectomy unless that was the only way to prevent the cancer from metastasizing to the rest of my body), but messing with your mind seems quite different. Who knows how something like that could affect your personality? We already know that lobotomies and traumatic brain injuries can cause some similar problems.

Sometimes it's not the things we can't control so much as the things we think perhaps we can.

Unlike Huntingdon's Disease, most conditions or illnesses for which there are genetic markers are not based on definitive have-it-or-you-don't genes, just genes that make you more susceptible to getting them. And just because you don't have those genes does not mean it is impossible for you to get them. We are just gambling on where beneath the bell curve we will fall.

Would you take preventative measures against developing mental illness if there were, say, only a 50% chance you would get it without said preventative measure? Let's assume this is a relatively new procedure and little if anything is known about side effects or long-term effects. What about 95%? Or 25%?

How much better would your life have been if it had not been full of secrets?

As much as I sometimes disagree with her and sometimes find her posts slightly manipulative, at other times I very much enjoy reading Penelope Trunk's blog for her voice, her sense of humour, the way she gets me thinking, and especially for her candor. And she's done it again.

She recently posted an explanation of why she is so open about things many of us would never dream of talking about, at least not out in public on the internet with first name last name picture and everything--getting divorced, having two abortions, her company's financial troubles, her romantic life, you name it. Here's an excerpt:
My point is that my childhood was ruined by secrets.

In hindsight, so many people kept the secret: my family, the police, teachers before my freshman year. Decades later, when I asked my high school friends what they thought of me in high school, two of them told me that everyone thought I was nuts coming to school beaten up so often.

I’m not kidding when I say that I thought I was keeping that a secret.

So what I’m telling you here is that I’m scared of secrets. I’m more scared of keeping things a secret than I am of letting people know that I’m having trouble. People can’t believe how I’m willing to write about my life here. But what I can’t believe is how much better my life could have been if it had not been full of secrets.

So today, when I have a natural instinct to keep something a secret, I think to myself, “Why? Why don’t I want people to know?” Because if I am living an honest life, and my eyes are open, and I’m trying my hardest to be good and kind, then anything I’m doing is fine to tell people.

That’s why I can write about what I write about on this blog.

And when you think you cannot tell someone something about yourself, ask yourself, “Really, why not?”

In some ways, growing up in house with a mentally ill parent is not unlike growing up in a house with abuse, alcoholism, or some other dysfunction. There's so much secrecy. So much feeling like nobody else gets you. So much wanting to be normal, trying hard to pretend that things are normal. As if growing up weren't full of enough fear of being judged.

Funny how shame maintains its grip even when we have done absolutely nothing to be ashamed of. For me, it is a mixture of a little bit of shame and a lot of fear about how people will react. Mostly because even after having written a lot about my mother's illness and what it was like to grow up with her, I still have a difficult time articulating a lot of things. To come up with some sort of elevator speech for it seems an injustice. But it's a really hard thing to understand if you didn't grow up with some type of dysfunction and secrecy at home, if you didn't grow up much faster than you should have.

And I want people to understand, but can't seem to communicate it, and so I don't say anything at all. And I'm still terrified of people rejecting me, or that they'll stop talking to me or not ask me questions because they're scared of it and don't know what to say. I hate when people say things like, "That must've been hard." Um, well, it wasn't fun. What do you say to that that doesn't sound like you're seeking pity? I'm also scared that they will ask me questions, and even though that's what I'd prefer, that I'll just lose it when they do.

How open are you? Who was the first person you told? Do your friends know? Your significant others? Coworkers? Random strangers on the internet?

more than the sum of our parts

It's almost halfway between Mother's Day and Father's Day, and instead of reflecting on lives lost to war today (although Andy Rooney did an exceptional Memorial Day commentary on 60 Minutes last night, saying what too few are willing to say on days like today), I am thinking about parents and how they shape us.

To lay all of who we are on our parents (or whoever raised us) is too much, too easy, too simple. But there's no denying that I am who I am today because of my parents. I am who I am today because I have a mother with schizoaffective disorder (bipolar in her case), and because my father does not. I am who I am because they are who they are. And there is all this politics of saying that someone has a mental illness rather than that they are mentally ill. It is just a part of who they are, not all of it, stress advocacy groups.

Yes and no.

My mother was not diagnosed until I was 14. I'd always known there was something not right with her, and I always thought that once I knew what that something was, all my questions would be answered, somebody could fix it, and then I would get to have my real mom.

But my "real" mom is no more real or unreal than the "real world" postcollege. Socrates' postulation that "the more you know, the more there is to know" seems to be a recurring theme in my life. Sure, having a name (a label, a category) for some of her behavior was helpful. But for all the advances science and medicine have made, how little we know about the mind. Names and labels make things easier to talk about; they give you a handle, but the pot's still empty.

For all the categories, symptoms, and theories that I've learned about since my mother's diagnosis, all that I've really learned is that you cannot separate a mental illness from who someone is. Sure, the delusions and paranoia are symptoms. But what about my mother's propensity to talk anyone and everyone's ear off? Her messiness? The way she exaggerates everything? When is it a symptom and when is it just the way someone is? I don't remember where I read this, but somewhere I was reminded that mental health is a spectrum, not a definitive state such as being pregnant or having the chicken pox.

What about other lifelong or seriously life-threatening illnesses? Don't those affect people in similar ways? One of my college friends had cancer when she was in junior high. Fortunately, the cancer is no longer in her body, and she lives her life like any other 20-something-year-old, but I don't think being a cancer survivor will ever not be a part of who she is. And it's hard not to want to separate when it's a mental illness. I wanted so much to believe that my mother said mean things to me because she was ill, not because she was mean or hated or me or truly regretted having me. If my mother didn't have whatever this was, she would be constant, loving, stable. I truly believed medicine could flip the switch.

So maybe this is why I have trouble seeing anything as black and white. All my life, everything has been a gray area, everything has been a spectrum, everything is shaded with meaning I can't begin to understand. I love words and writing, but I am constantly frustrated by all of its limitations. I love to analyze, but if all the analysis in the world can't answer our questions, what good is it? What good is any of it?

One of my favorite quotations comes from Nancy Andreasen, who has studied the brain and mental illnesses for years. In one of her books, Brave New Brain: Conquering Mental Illness in the Era of the Genome, she wrote:

"The more we analyze, the more we feel we understand. The more we analyze, the more we feel we can control. We forget that megabytes and millimeters and millennia have no intrinsic meaning and are merely human inventions. By trying too hard to understand everything, we may understand nothing. We analyze so much and so well that we may also destroy the vital essence and meaning of things by breaking them into pieces."

Reading that, I realized that I had been going everything wrong. While I understand trying to destigmatize mental illness by saying that it is a disease that someone has, just like cancer or diabetes. It's not that that isn't true. Yet to simplify it in that matter fails to do justice to any true attempts to understand it. My mother's mental illness is no less a part of her (and no less a part of me) than an arm, a lung, a vertebra. The only real way to destigmatize mental illness is by talking about it, by being open. It is not by sugarcoating it, by using terms and labels and breaking it down. It requires being honest, being human, and realizing that we are all more than just the sum of our parts.

I make no claims to having achieved such grand enlightenment, but I am trying.