I have this friend. I've written about her before, I know. T. is many, many things I cherish in a friend: generous, dependable, clever, capable, responsive, and funny — my God, so funny. She had her kids at the same age I had mine but encountered no difficulties. So it wasn't until I had trouble conceiving that the question of infertility presented itself to her in any meaningful way. We learned a lot about it together, I firsthand and in the moment, she just a half-step behind.
She's always been there for me. If because of this experiential gap there have been times that "there" has meant "not quite exactly there," well, it was still a lot closer than any of my other friends were. I'll give you an example. The day I was discharged from the hospital after Charlie's birth, she dropped everything to show up, take me to lunch, and treat me to a pedicure, a bracing few moments of normalcy that shored me up more than I can say. (The pan of lasagna and the brownies were a nice touch, too.) This past weekend she said to me, "It wasn't until Charlie was born that I learned that when a baby's born early, there's something to say other than 'Holy shit it's so soon oh my fuck is everybody okay?' That you should also say, 'Congratulations! You have a baby now!'" See what I mean? She's always been right there with me, taking it all in — not always knowing immediately what to say, but paying very close attention, meeting it all with an open heart, and learning. Just like those of us living it more personally.
So I get a little thrill — of pride, of gratitude that I have such an ally — each time I see the payoff from that. Since my experience is over, her understanding has fully caught up, and I'm rocked by the awesomeness of hearing her in action: arguing with a solvent staunch Republican friend, say, who's dealing with infertility himself, about insurance coverage for treatment. Or taking her chiropractor to task.
Her chiropractor, it seems, regularly posts a bulletin up by the front desk. I imagine it's generally something along the lines of Your Spine: Threat or Menace? and What to Expect When You're Expecting Your Head to Be Twisted Clean Off. On the day in question, the bulletin made...let us say egregiously inflated...claims about chiropractic care and infertility. T. read it, drew herself up to her full rhetorical height of about eight foot six, and marched in to the exam room, where she proceeded to tear the poor unsuspecting chiropractor a brand new musculoskelethole.
She told him, she said, that although chiropractic adjustment might have some applicability as complementary medicine, it doesn't constitute any kind of standalone treatment or cure for infertility, and that by posting the bulletin his office appeared to endorse a stance that was wholly irresponsible. That by disseminating such claims, his practice could deter patients of his from seeking real, for-true reproductive medical help. And that he was lucky, she finished, to be hearing this from a patient who didn't have an immediate stake in the matter — not a vulnerable patient, not one the notice had hurt or offended personally, "not my friend Julie, who'd probably feel like burning down the clinic just to make a point."
Which is funny, because, you know, I don't have anything against arson, but it might have been a slight exaggeration.
We visited T., whom I like to call Effortless Segue in moments of affection, this past weekend. I was somewhat apprehensive about the visit because of Charlie's recent behavior. But I worried for nothing. He was wonderful, really great company. It's almost like he'd read my post and all of your truly helpful suggestions and decided he'd better shape up if he didn't want me following him around cheerfully saying, "That's terrible! But I don't care! Now I'm going for a time-out. In a place of loving curiosity! After which I will shepherd you to bed promptly at four of the clock. Also, the cat loves me better." Or some combination of same.
Really, thank you all. I read every comment with great interest — not to say ravenous desperation — and they gave me a lot to think about. In the spirit of continuing conversation, I'll say that while an earlier bedtime has its charms, what we found when we put Charlie to bed early is that he still stayed awake exactly as long, sometimes until nine o'clock and beyond. With yodeling, y'all. Now, I'm not opposed to his being awake, working out the details of his day; mostly I just need him to be in his room alone and in bed. As the Biblical proverb goes, you don't have to go home, but you can't stay here. But going all lonely goatherd is simply not okay. Anything short of eight and, goddamn, it's Yma Sumac.
Also, I have a terminology problem with some of the suggestions, probably nothing more than semantic, but significant. Any sentence that begins with "I love you, but..." makes me shiver a little. To me, that seems to suggest a condition. I don't want any kid to think that there are limits on my love. (My tolerance, certainly.) I'd be much more inclined to say, "I love you, and..." or "Because I love you..." I love you, and I want you to learn to behave like a decent human being instead of an entitled little savage, so... Or Because I love you, I can't let you become someone who says mean things to hurt people. I know this is probably an esoteric point, but I think language is important. (The same goes for "I love you, but right now I don't like you," times a million. I feel creepy even typing that.)
But what a lot of great insight in those comments. I want to single out one particular way in which you've helped. Up till now I've made an effort not to talk about the jobs I don't like to do. Oh, sure: When Charlie complains about setting the table, I've reminded him that everyone has to do things we don't want to, but when he's asked what I mean, I've admitted only to hating to pay taxes, or getting shots, or saying goodbye to good ol' Effortless Segue. Neutral things like that. I haven't wanted him to think I resent any of the things I do to take care of him and Ben. But I'm starting to think that's wrong-headed, a good way to allow him to take for granted what Paul and I do every day. Maybe, just maybe, it's okay for him to know that I'm not that jazzed about cleaning errant pee from the toilet seat. And the floor. And the wall behind the toilet. And the crevice where the toilet tank joins the bowl. (If there are still more places pee can hide, do not tell me where.)
Even more helpful was the commiseration. It's such a relief to know that even if my young reprobate does end up in prison, at least he'll have plenty of company. Hair-tearing-out shared is hair-tearing-out assuaged. And if not, we'll go bald together.
I get so much out of my blog. Thank you for helping.
Now can I tell you about Ben for a second? Ben is awesome. There.
I just don't know how to convey how dear he is, how delicious I find him even when he's screaming, screeeeaming, oh Jesus please stop the screaming. I don't have any great anecdotes that illustrate it; it doesn't make for much of a story, the way he gathered his boots because he wanted to leave the café, but then saw me bringing a brownie, so stopped in his tracks and dropped them, but it does make me grin like a fool.
Finally, an update on the Utah bill that made me so crotchety, the one allowing the state to charge a woman with criminal homicide for inducing a miscarriage or obtaining an illegal abortion. According to the New York Times, the scope of the bill has been narrowed somewhat:
The sponsor, Representative Carl D. Wimmer, a Republican, said he had removed a key clause that would have allowed prosecution under Utah’s criminal homicide laws for a “reckless act of the woman” that resulted in death to a fetus. Language will remain, he said, that makes a woman’s “intentional” actions, if resulting in the death of her fetus in an illegal abortion, a felony.
Gosh, thanks, Carl! That's so much better!
Arizona non grata
It's a beautiful Friday afternoon here, one of the first to feel like spring, which can mean only one thing: Somebody's fucking with someone else's reproductive rights.
Two bills are currently before the Arizona legislature. Each of them has enormous implications for infertility treatment in that state. Please take a minute to read and seethe before you dig out your flip flops and fret about the state of your toenails.
The current Arizona initiative is the work of CAP, the Center for Arizona Policy. CAP, the conservative group recognized as Arizona's most influential lobby, has crusaded in the past against gambling, pornography, and abortion rights, and counts among its successes a state ban on same-sex marriage and acquisition of funding for abstinence education. Their current agenda includes giving adoption preference to married couples, extending the waiting period for divorce, and restricting embryonic-stem-cell research. Oh, and a charming little duo they like to call SB 1306 / HB 2651 and SB 1307/ HB 2652.
These bills, if signed into law, will discourage egg donation for use in IVF; prohibit compensation for egg donation for research; and severely limit the options available to patients with unused embryos.
Here's a quick breakdown of why these bills are problematic. (Chime in, knowledgeable friends, if I'm missing anything.)
Discouraging donation through legislating informed consent
SB 1306 / HB 2651 "is designed," according to RESOLVE, "to discourage doctors from providing donor egg treatment…" and really, we could stop right there, because that's a complete sentence in itself, and an accurate one at that. That's exactly what this bill is intended to do.
But the alert continues: "…by imposing a raft of new informed consent requirements coupled with harsh penalties — loss of medical license — if a doctor does not follow the new rules to the letter."
But wait, you say, what's the problem with that? Don't clinics already require informed consent?
Indeed they do if they're run anywhere within hollering distance of widely accepted ethical standards, and certainly if they're affiliated with the ASRM, which requires this as a minimum:
[E]ach prospective patient/couple must be provided with all relevant information necessary to make an informed decision regarding the proposed treatment and must be given the opportunity to ask questions in order to gain a better understanding. It is also important that couples are provided with full information concerning risks, benefits, and alternative procedures available to circumvent their specific infertility problem, including procedures that are not performed by the treating center, as well as non-medical options such as adoption and no treatment.
I don't know a single ART patient anywhere who hasn't had to sign multiple pages of multiple documents attesting to their informed consent. Clinics already do this. Legislation is unnecessary. So why bother? To control the message and limit the application of ART.
The problems with this aspect of the proposed law are twofold — well, possibly severalmorefold, but these are the issues that immediately concern me:
- The only other medical procedure that has a legislated informed consent process in place? Abortion. Not only is there obvious potential for abuse with such a law, but the parallel being drawn between ART and abortion is chilling, as it is intended to be. If informed consent is legally mandated, so can the content of that consent be, and if you don't see why that's scary, let me know. I'll work up a puppet show or something.
- Notably, the bill calls for such a consent to include notice that an egg donor "cannot be completely informed of all potential risks or effects because all potential risks or effects and the magnitude of those risks or effects are not known." This is as true as it is for any mainstream medical treatment. That is to say that it is true, but that we've established, by this time, a reasonable understanding of those risks, their likelihood and their severity. This is the "scary additional language" RESOLVE mentions, which insinuates that ovarian stimulation and egg retrieval, practices that have been undertaken and closely studied for almost three decades now, are a shadowy mad scientist affair.
Acquisition of eggs for research
SB 1306 / HB 2651 also prohibits physicians and researchers from paying for eggs to be used in research, i.e., "for any purpose other than treatment of human infertility." Aside from the fact that other types of human tissue are collected for research purposes in exchange for compensation — plasma and sperm, for example — this dramatically hampers the efforts of Arizona researchers to develop new therapies for infertility. (The original draft of the bill called for outlawing compensation to egg donors, period; cooler heads prevailed, but it's a useful fact to keep in mind when considering the mindset behind the initiative.)
Prohibition on research and destruction of human embryos
SB 1307 / HB 2652 comes from another angle and deals with the treatment of human embryos. According to the bill as written,"A person shall not intentionally or knowingly engage in any activity for nontherapeutic research that causes or results in the injury, death or destruction of an in vitro human embryo."
...where "nontherapeutic research" is defined as "research that is not intended to preserve the life or health of the particular human embryo subject," i.e., anything but transfer into a human uterus.
In other words, if you have embryos left over after your own infertility treament, in Arizona you may not donate them for research, and you may not have them destroyed. Your physician would do well to note this, on pain of felony prosecution.
The bills came as a surprise to area fertility specialists, who weren't given sufficient opportunity to speak in hearings about the bill. Very little public debate has occurred; Senator Linda Gray, who served as a primary sponsor of both bills, declined to read in committee the letter signed by eight reproductive endocrinologists opposing the measures.This is the same Linda Gray who told the Phoenix New Times that she didn't read the bills before signing on. (Good one, Linda.) If she had, maybe she'd have known better...
Gray insisted that she never intended to upset fertility specialists or their patients. Three decades ago, she says, she herself was a member of RESOLVE, the chief support/advocacy group for women dealing with infertility. Her only grandchild is the happy result of in vitro fertilization..."I know the pain these families go through," she says.
...but then again, maybe not, as she still stands by the bills, despite the restrictions they place on exactly the people she claims to identify with. To paraphrase, "I got mine, Jack."
CAP claims that it is "committed to protecting and defending the family by influencing policy, communicating truth, and empowering families to promote timeless values." But what exactly is pro-family about restricting the opportunity to become one? How can you empower a family if you stand in the way of creating one?
Even if you're not infertile, this issue matters. These bills are not a personhood initiative, but they're about as close as you can get without being emblazoned with big red letters saying FULL VOTING RIGHTS FOR ZYGOTES (AS LONG AS THEY VOTE CONSERVATIVE). Don't give that crucial inch. Please speak up against these bills.
What you can do
If you live in Arizona or care about someone who does, please contact your legislator and make your opinion known. You can send a letter through RESOLVE, or you can contact your representative directly. E-mail, call, and fax. Let them know you're serious: use up all their toner.
What I'm hearing is that representatives are soothing callers by telling them that the bills have been fixed. They haven't. If you can, please make some angry noise.
I don't speak for RESOLVE, but they sure do a good job of letting me know of new and exciting opportunities get good and super-cranky.
Loose ends, and other matters not pertaining to my GYN exam
There's just so much I want to tell you. I sit down to write with fifty things I mean to say, and then realize I don't have the wit, the energy, or the sharpness of mind to say even one of them well. It discourages me, so I let a day pass, and then another, and before long I feel like I can never keep up.
But this is not some mopey lament about how over blogging I am. Having a blog isn't getting me down; I am getting me down. I miss my blog. I miss here. I miss you! I miss keeping up. So consider this a bit of a catch-up, today and tomorrow, to clear out some of the backlog. I want to get back in the habit of communicating and connecting, instead of dicking around for days as I search for le goddamn poste juste.
This week I went to my OB/GYN for my annual exam. Aside from the pleasure of seeing Melissa's book there on the table in the waiting room, just where I left it some months ago but now looking visibly worn, the visit was...mildly annoying. Not tense or fraught or suspenseful or anything, in fact, but a chore to be crossed off the list. Take car for oil change. Call insurance agent about updating homeowners'. Battery for laptop. Spread 'em like it's Fleet Week.
How strange to be there for no other reason than routine, to sit there slightly bored rather than stiffly alert. To...not really care...about any of it, to tune out juuuust a little when the doctor took out a chart to show me what hormones do (or what they should). Been there, cried about that. I just feel past it all.
So gynecologically disengaged am I that I almost forgot to mention the mid-cycle bleeding I've had on and off for about a year now. That was an "Oh, wait..." moment as he stood to leave the room, jellied glove halfway to the garbage can. Upshot is, I go back in two weeks for an endometrial biopsy to rule out blah blah blah Charlie Brown's teacher -- told you I tuned out -- but I'm pretty sure everything's fine. My money's on either a fibroid or menopause. If it's a fibroid, I...do nothing. If it's menopause, I...do nothing. Okay, no: I'll probably laugh. Because the idea that menopause might bring my rich and fecund childbearing years to an end forever! -- well, it is kind of funny when I think about it.
The doctor advised me that I should "take a few Advil" before my biopsy. This is one of the few in-office reproductive pro-ceeeeee-dures I have not yet experienced. I'm guessing "take a few Advil" means "good thing you hoarded those Percosets," right? What do I need to know?
Stem cells. Fucking stem cells, man.
I don't even know how to talk about this without getting all spitty. I wish I could be a more reasonable advocate. But when I start to type my fingers go off in eighty different directions and I start speaking in tongues and handling snakes and typing incomprehensible gobbledygook like
adfh]hr ibnoqr -9 2r-JJ_9j--hn9]0
) 0]9 WRY) 0yr y0 rh0 QTH]JPOSW G
...which makes me pause to wonder if maybe I'm being haunted by the miserable shade of Stieg Larsson, who I guess must have needed a break from tormenting Nora Ephron, and in the middle of whose third book I am currently hopelessly mired...
Like that clause? Do you like that clause?
...Do not fuck with me when it comes to gibberish...
...And then I go for the big Voynich Pentecostal Esperanto finish with
Jesus goddamn, can't you people keep your laws off my body and out of my cryo tank?
It makes me feel a little stupid, because I read about incursions against stem cell research, and I think, But they're mine.
Those three embryos, frigid in stasis, belong to Paul and me. If we wanted to transfer them to a ready uterus, it would be allowed. If we wanted to donate them to another recipient, the only barriers are logistical ones. If we wanted to destroy them outright, the clinic would do so. If I wanted to show up with block of dry ice in a SpongeBob Thermos and say, "Load up the children! We're going on walkabout!"...
Well, they'd think I was quite insane, but I think I've made my point.
So the idea that we can't donate them for stem cell research and have a reasonable expectation that they'll be put to productive use for the public good -- to continue efforts begun years ago that are just now coming to fruition -- aggh, it makes me craaaaazy.
This is a very primitive response. I understand the political implications of all this. I know exactly what initiatives like this may one day mean for reproductive freedom. (Lean in so I can whisper: Ix-nay on the abortions-hay.) It's the foot in the door, the thin end of the wedge. I know that, and I'm infuriated. I recognize and fear the farther-reaching consequences of these actions.
So it feels like a picayune gripe, this specific, personal anger I have that anyone dares to tell me what I can and cannot have done with three tiny clusters of cells. But like those embryos, that rage, while small, is mine.
Some days I get it right. Last night Charlie was having a hard time getting to sleep. He'd called from bed three or four times for this or that. He wanted water. He was feeling lonely. He'd heard a train in the distance and thought that I should know.
And I was getting irritated. Charlie goes to bed at a reasonable hour, between 7 and 7:30, and reads for about 20 minutes before lights out. But he seldom goes to sleep before 9, despite every sleep cue we've managed to thrust upon him. I've never worried too much about this; as long as he's in his room, in his bed, with the lights out, and quiet, I figure the rest will take care of itself. But, God, does it get on my nerves to hear that third or fourth call down the stairs. On more than one occasion I've told him I don't want to hear another word unless he is on fire, and I will ask the smoke detector to corroborate that.
Last night, I don't know, I was feeling sympathetic. The last week and a half has been hard for him, I know. He's loving kindergarten ferociously, and has been nothing but sunshine around the house. But it's easy to see that it's stressful for him. I think the act of holding it together is pretty taxing. He's fragile, more dramatic than usual, quicker to fall into misery or fury.
Knowing this, I've wanted to be kinder. Last night, even though I was muttering, "You'd better be missing a limb," as I climbed the stairs, I approached him with intentional gentleness. I soothed him, suggested he take off his pajama top if he was hot, got him some water, turned on the lullabyes he deemed too babyish earlier this year. Basically just loved him, I guess, in a way he could understand.
And then went to the laundry room to unpack the bag of assorted items that came home with him on his last day of preschool. Odd socks, spare pants, innumerable crumpled pieces of paper that are surely special treasures. And the journal he kept in his classroom, a blank book filled with mostly scribbles and bizarre-looking stick figures.
And I looked at this and thought, Jesus, what a good day when you find this after you've been nice.