Thursday, August 13, 2009

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%?

Monday, August 10, 2009

I imagine it must be hard

Empathy is an amazing thing. The ability to put yourself in someone else's situation and relate to them is essential to humanity. Without it, isms would run rampant and there would be even more violence than there already is.

But there is something to be said for having someone you can talk to who gets it. Who has faced the situation as you, has had to make some of the same decisions, who truly knows exactly what you're going through.

On Saturday, I attended a memorial for family members of an acquaintance. Four members of her family died in a car accident last summer. Her two surviving siblings both have disabilities, and she is the guardian for both. She is in her late twenties. When she got up to speak, she thanked many people, and it was clear she'd had a lot of support from friends and family. She'd had a lot of sympathy. She'd had a lot of empathy. But she still felt alone, like no one really knew what she was going through. And then she got a call from a local organization who put her in touch with someone who lived in the area, had also lost her parents, and was raising a brother with a disability. I can't begin to imagine what she's been through, what she goes through every day. But I'm glad that she has someone she can talk to who does know.

I hope you have someone like that, and if not, I hope you decide to reach out and look for someone. Whether it's through NAMI or another organization that offers support groups for caregivers, or through the internet, through groups like Children of Parents with a Mental Illness, it will make a big difference. To mention something and not have to struggle to articulate the full scope of the experience. To describe something and have someone nod in affirmation.

We take for granted that understanding when we talk about relationship problems or being stressed out at work or school. When we talk about dealing with poor customer service or having to fill out twenty different forms to get our insurance to pay for something it's supposed to cover. It's easy to find someone who can relate to all the trivial things in our lives. And usually we can find someone who can relate to the big things, too: losing someone close to us, or becoming a parent for the first time. It's not always that simple for the things that we don't talk about, and it makes it that much more important. We all need to know that someone else has felt the same, survived the same. Not just in the helpful advice and mentoring way, though that is certainly beneficial. But ultimately what we need is proof that we, too, will be okay.

Monday, August 3, 2009

When is health mental?

Ashoka's Changemakers and the Robert Wood Johnson Foundation are teaming up and Rethinking Mental Health. Or more accurately, they are sponsoring an online competition and will give awards to organizations* (nonprofit or for-profit) that submit the best ideas AND plans to help them carry out their initiatives. Find out the guidelines and criteria and all that kind of important stuff here.

And you can start reading some of the ideas submitted here, but it is early yet. Also, to be quite honest, I have not yet entirely figured out how this forum works since there seems to be an awful lot of clicking involved.

However, I can't wait to see what comes of this. I am pretty optimistic since RWJF places a high priority on funding initiatives that will help bring about widescale change and Ashoka, well, how can you not like a social change organization founded by a guy who, on a summer break from college, drove from Munich to India to join one of Gandhi's followers in redistributing land to the untouchables?

*(So yes, unfortunately you cannot apply as an individual, but if you have an idea you would really like to put into action, why not reach out to a local (or national) organization in the mental health field that might be well-suited to partner with you or help bring it to fruition? This is not to say that any of this is easy and it certainly require that you do lots of homework and planning and all that, but you never know. On the other hand, if you work for or with an eligible organization.....get crackin'!)

Regardless of whether you're with an organization or not and whether you will be submitting anything to this particular competition, how do you propose that we, as a society, rethink mental health?

Thursday, July 23, 2009

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?

Wednesday, July 22, 2009

Back to Normal

I faithfully check PostSecret each Sunday. Last Sunday, this was one of the postcards. While it seems mean, I completely understood. Especially when I was a teenager, I found it so much easier just to be angry at my mom regardless of what she was doing, even when she was nice. When she was nice or not doing anything to me, I'd be mad at her for not letting me be mad at her. And while I felt/feel guilty about was just so much easier to make her out to be the bad person than to recognize that she was human, multi-faceted, and that she wasn't necessarily control of a lot of her behaviour. That difference of what your head knows vs. what your gut feels.

I'm not sure what was worse, her screaming like a mad woman and being paranoid and obsessive, or the anxiety of never knowing what she was going to be like that day. To this day I still can't stand people who are unpredictable and/or inconsistent, even if it's just that they're flaky or impulsive rather than mean or anything like that.

For those of you who had a mentally ill parent, could you identify with this secret? And for those of you who did not, what was your first reaction?

Tuesday, July 21, 2009

Daughters of Madness

I just started reading Daughters of Madness: Growing Up and Older with a Mentally Ill Mother by Susan Nathiel, which I initially heard about through the Facebook group Adult Children of Parents with Schizoaffective and Other Mood Disorders. (Another new and helpful Facebook group is Children of Parents with Mental Illness. There are probably others, but these are the two in which I participate. But I digress.)

Basically the book follows the stories of numerous women who grew up with mentally ill mothers from infancy through adulthood, guided and explained in the context of the stages of human development by the author, a psychotherapist. Just 50 pages in and there is so much that resonates with my experiences as a child, that uncanny feeling that someone does in face know exactly what you're talking about. There are also a number of stories that reinforce how fortunate I was to have a stable dad and how much worse it could have been. But already, it brings a lot back, and I am very interested to see how the book progresses.

I have done quite a bit of thinking about how my mother has affected the kind of person I am today--from being hypercritical of myself and anxious about making mistakes to being very responsible and not wanting to have kids too young b/c I want more of a break from being responsible for anybody else (along with a whole host of other unrelated reasons as to why I am not yet ready to be a parent!). But I've never thought about it in the context of the stages of human development, even though I studied that a little in college. (I was a wannabe psych major, I'll admit it.) So I'll probably write another entry when I've actually finished the book, but if you have read this book or similar books or have any thoughts on this subject, please feel free to comment!

Tuesday, July 7, 2009

Reaching out vs. Respecting boundaries

Earlier today, I was talking with a friend about our 4ths and she mentioned her significant other's parents had visited and how the dad is wont to talk incessantly, not about anything necessarily related to the current conversation, and he'll follow you around and keep talking to (or rather, at) you even as you're shutting the door to the bathroom. He's always been like this, apparently. I really wanted to say, "My mom does that, too," but then somehow we changed topics and the moment passed.

I remember once overhearing a former boss say to somebody else on the phone about how her husband was depressed, and she was trying to explain it to whoever was on the other end of the line, but she didn't seem to be having any luck. I wanted to say something, to tell her that it's something I've also struggled with, but a.) I had overheard it, and b.) I didn't know if she wanted me to know.

Sometimes opportunities present themselves and usually I do not take them and then kick myself afterwards. What if I told them something they didn't want to hear? Like, hey, your father-in-law's odd behavior sounds like my mom's and she has a mental illness so maybe he does too! I mean, I guess it is better that he get treatment if that is the case, but then again it may just be some quirk of behaviour that has nothing to do with mental illness. And then there is always that question of how much is too much information to share at work.

Illness and abnormalities make people really uncomfortable. Just ask anybody who's an amputee or visibly a burn victim. Yeah, there's all this ra-ra-bust-the-stigma and it's cool to smash taboo and whatnot. But just like in cognitive behavioural therapy (or whatever that method is for helping people with phobias through gradually increasing exposure), I think dealing with stigmas is one of those things that is a nudge-over-the-edge type thing rather than a sink-or-swim type thing. (Such an articulate sentence, I know.) Sometimes getting to know someone of that "other" group or some other type of interaction/experience speeds this up a lot, but rarely are such planned occurrences effective. All those exercises about stereotypes in school were just awkward and sometimes self-defeating.

Sometimes too much too fast just pushes people in the opposite direction. Not trying to knock Augusten Burroughs, and admittedly I haven't finished the book b/c I can't remember where I put it, but Running with Scissors just seemed like another memoir in the veins of I-had-a-fucked-up-and/or-bizarre-childhood. Augusten Burroughs is "that guy" at the party, much like Dave Pelzer or [insert name of someone else who wrote a memoir about traumatic experiences here]. The further something is away from our own experiences, the harder it is for us to identify with them, to truly empathize, and to understand. We don't even try; we just pity them. For me, the first book that really spoke to my experience was Phyllis Reynolds Naylor's The Keeper. I read it and kept thinking, "Yes, I know that feeling exactly!"

Anyhow, getting back to my original quandary....

When do you reach out to someone, take that step in their direction? And when do you respect whatever boundaries they have set about what they're willing to share with you?