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?