Friday, March 23, 2012

Words That Harm, Words That Heal

"Words are, in my not so humble opinion, our most inexhaustible source of magic, capable of both inflicting injury and remedying it." -- Albus Dumbledore to Harry Potter in film "Harry Potter and the Deathly Hallows Part II"

"Too much time on my hands, I got you on my mind
Can't ease this pain, so easily
When you can't find the words to say, it's hard to make it through another day
And it makes me want to cry, and throw my hands up in the sky." -- Iron Maiden, "Wasted Years"

I am so grateful to all the friends, family and acquaintances who are reaching out in many ways to express their sympathy to David and me about the recent loss of our unborn child. Most people say something along the lines of, "I don't even know what to say to you." That is unsurprising, because there is very little to say other than, "I'm sorry," which feels inadequate to most people saying it, even though it isn't to me when I'm hearing it. In fact, I would argue that when you veer much beyond that, you risk stepping over a line. I am obviously very public about this, which opens me up to all kinds of comments from well-meaning people. But I've had to reconcile enough painful "condolences" these last two weeks that I want to write a specific post about some do's and don'ts to comfort women who have miscarried. Obviously, every couple is different and every loss is different, so I'm sure there are people who would not be offended by what offends me, or who might not be comforted by what comforts me. But, I'm pretty reasonable, and I think I can provide a place to start. A friend of mine asked me to pen this.


1. Here be dragons! There is one primary thing to avoid when talking to a couple or woman who has lost her baby: please do not say anything along the lines of, "There was something wrong with the baby. That's why this happened." Nothing is less relevant and more hurtful at this time. Grief is a duty of the heart, and this comment is rational, a response of the mind. Yet, if I had a dollar for every time someone said it to me lately, I could treat a dozen friends to Venti-size expensive coffee drinks. Let me qualify this by saying that most people who dole out the "something was wrong with the baby" line are well-meaning people who are trying to help. Quite a few of them are female friends of mine who have miscarried, and this line of reasoning helped them cope with their pregnancy losses. Yet, it cut me like a knife when I heard it, and was only made worse by the people who embellished it with, "Better this than you have a child with an illness or a special-needs child." This is offensive on so many levels, I can't even go here.

We are decently bright people, and we understand the science quite well; biology was my minor and remains an interest, and I was a health writer. Furthermore, as common as miscarriage is (very), it is actually not well-understood and varies case-by-case. An acquaintance of mine related this "something wrong..." line in the name of her husband, a paramedic. When I whined to a friend of mine -- a very advanced health-care professional with a 23-year career in obstetrics -- about this she gave the deliciously snarky reply: "Wow. I'm so impressed that her husband the paramedic has figured out what the best researchers and physicians in my field continue to study and struggle with." In other words, it's complicated. In fact, a reproductive endocrinologist has since explained to us that there are five main categories of miscarriage, and there being a problem with the baby itself is just one of those five. That leaves four other possibilities.

Even if you have miscarried and even if it comforted you to believe that the pregnancy terminated because of a specific problem, it is enough of a potential bombshell that it's probably best to avoid saying it to someone else.

2. No Medical Advice, Please: Pirkei Avos (Ethics of the Fathers) states, "Who is wise? He who learns from all people" (4:1). However, there are limits to this, and if there is one thing I excel at, it's taking care of my wellbeing. My journey with Lyme Disease and fibromyalgia has ensured that I have to be a fierce advocate for myself; I have spent years learning how to make the health care system work for me and my family, and I don't accept any half-assed medical care. So, I don't want to sound haughty, but my experience is that most people who don't have an M.D., NP, or PA credential after their initials don't have much to teach me about medicine. I get my referrals from top-rate doctors who know my health history and my personality well. I had a cousin recommend I get tested for a clotting disorder that runs in the family, which I really appreciated, and still many others say, "Let me know if you need medical referrals." I appreciate all that, but not much more specific advice unless you have had the same problem that I have and have specific information that could help me. I acknowledge that until now, I have had no experience with reproductive problems, so what I do value is other women's and couples' experiences who have been on this journey. However, if one more person tells me that acupuncture would prevent a miscarriage, I'll hurl on their shoes, I promise.

Seriously, I'm thrilled you're pregnant: Don't be afraid to tell me you're expecting. Just tell me in private if we're close friends. I'm genuinely happy for my friends who are expecting, and perhaps selfishly, I never want to become someone who isn't happy for people who are pregnant. It's just important to me. I think I've done a good job of holding my own disappointments in one hand, and the joy of my friends expecting children in the other.

Etc.: Another thing that has been hard for me to handle are any kinds of statements about my personal faith through the tragedy of a miscarriage. As I mentioned in an earlier post, I bristled at someone's comments to me along those lines. I think it's probably best not to make any presumptions on this topic. The other thing that annoyed me is people who ignored this because of their own awkwardness; it's a big deal to us, and no, we don't expect you to fix it, or even really comfort us. So, with all that said, what does help?

1. Gifting Yourself: The number one helpful thing that other people did for me in the aftermath of the miscarriage was spend time with me. I had friends come over and hang out with me, hold me while I cried, and walk the dog with me. Sometimes all three! These visits lasted from 45 minutes to three hours, and they really helped. Other people checked up on me with frequent phone calls, text messages, e-mails, and Facebook messages. That also made me feel cared about. My religious community kindly cooked meals for our Sabbath, so David and I wouldn't have to worry about feeding ourselves; that was hugely helpful, and made us feel really cared about. Other people sent cards, which also felt good. Again, people just reaching out to say, "I'm so sorry," is really what mattered to us.

When I asked David what most helped him in the immediate aftermath of the miscarriage, he said, "When people asked me things, rather than told me things."

2. Prayer: 'Nuf said.

Saturday, March 10, 2012

Waking Up Is The Hardest Part

"You are getting your PhD in grief." -- My mom, to me

In the last ten months I have lost my father and two children. I can say, definitively, that for me, waking up is the hardest part of grieving. I have always -- for better and for worse -- sought refuge in sleep, so even in the midst of tragedy, I am a sound sleeper. There is little worse than waking up from a deep sleep, and in those first flutters of consciousness remembering, "Oh, shit. That was not a dream." David and I found out on February 27 that this baby, like the one last summer, had not made it. I woke up the next three days sobbing when I realized the memory of the miscarriage wasn't some messed up nightmare, but our reality. I had this same exact experience in the week or 10 days following my dad's death: wakefulness, consciousness, heartbreak.

February 27 was a day of sickening deja vu. Being at the radiology clinic almost 11 weeks pregnant, a pessimist and worrier of the highest order hoping that my bleeding would turn out to be the spotting that about one-third of women experience in a pregnancy. I knew the minute I saw the ultrasound that we were in trouble. Again. You then have to endure the worry for your spouse, the "I'm sorry's" from the doctor, the getting out of the clinic and into your car while sobbing or trying not to sob in public, all the while passing women with swollen bellies or children already born. I am so over crying in public now, which is part of the PhD in grieving. My crying comes in waves. Sometimes I'm fine, sometimes I collapse in a heap, and that can be in my kitchen, if I'm lucky, or if I (and others) aren't so lucky, I might be in public. I've learned that the best thing I can do is let it come, wash over me, and then fade away. The more I try to fight it or stifle it, the longer it'll stick around. So I surrender to the crying, even if I look like the crazy person on the bus.

The bad deja vu continued with the consultation with our obstetrician followed by the D&C at Sibley, although this time it was less nerve-wracking since I knew what to expect.

Blimey, what can I say about this? There are so many feelings, all of them personal, though I'm pretty public, if you haven't noticed. One thing I can say with surety is that I am pissed off at God. This is not a feeling that is helped by the rapidly-depleting pregnancy hormones leaving my body; you get postpartum moodiness without the postpartum joy of a kid. I got enraged seeing David pray on February 28. I said, "It pushed my buttons seeing you pray to a capricious, cruel God." He had a brilliant and true response: "You don't know what I'm saying to Him." Someone left us a voice mail in the days after the miscarriage commending David and me on our faith and expressing some envy of it. I was thinking, "Are you fucking serious?!" Me, whose spirituality after this event ranges from giving God the Silent Treatment to cursing at God?

I don't feel bad about this in the slightest, by the way. I think God can handle my wrath, and Yisroel (Israel) doesn't mean "struggle with God" for nothing. I just see this as continuing my Jewish tradition of fighting with God. I have told my Jewish spiritual teachers that I am pissed at God, and they all say, "Sounds about right. You should be." I only went to services on Purim night to support my husband performing in the shpiel; I survived being there by knitting through the entire megillah reading [reading the book of Esther]. It was that or Xanax, kids, and I chose the non-pharmaceutical approach. I was ok there until I recited mourner's kaddish for my father, the memorial prayer for the dead, and became wracked with grief over the child we had just lost. I felt like I was saying kaddish for him or her too, and it completely knocked me off my feet. If I had thought about it before hand I probably could have anticipated this, but I didn't, and it bowled me over. Once again, the crazy lady sobbing in public!

I went to services last night, and approached them with mixed feelings. Sometimes I just took comfort in the familiarity of the melodies and prayers. Sometimes I was the master cynic. For example, singing "Yedid nefesh, av ha'rachaman..." -- "Beloved of the soul, Father of compassion...," I thought, "Seriously? Father of compassion? Try again!" Sometimes I just thought, "You suck, HaShem," even as my heart acknowledged that I don't have all the answers, or access to the master plan, if there even is such a thing. I don't know, nor do I particularly care. My friend said to me of the miscarriage and my anger at God, "Sarah, this is not a matter of God. God wants life. We are fragile, biological creatures, and this stuff just happens." Perhaps she's right.

I have a lot more to say about this, including a pointed post about what to not say to someone who has miscarried! All of it is heartbreaking and awful, though I feel like I am finally coming back to life at this point. Laughter is coming more easily, the tears slightly more infrequently. I am starting to talk to people I was avoiding. I want to blog again; I was so sick during my pregnancy that anything optional went out the window, including writing.

I am trying to balance grieving a tremendous loss in a healthy, mindful way. I'm not avoiding the painful feelings by: staying too busy; numbing out with food, alcohol, or illicit substances; or engaging in self-destructive behaviors. I'm trying to give myself room to take care of myself while not sliding into outright depression. So, yes, I nap when I need to, but I also am getting together with supportive friends, working out as much as I can, and making plans for the future. It is truly a day at a time, and some days are better than others. Heck, some hours are better than others.

I want to close by saying that I am so thankful that David and I haven't gone through this alone. Our friends' and families' practical and emotional support has been invaluable to us. They have cooked meals for us, come to spend time with us, called/emailed/texted us, sent cards and flowers, and just generally been there for us when we've needed to cry, vent or talk. Many of my friends have helped me collect myself when I wanted to haul off on one of the many people who said something heartless to me in my grief. For all this and more, we are grateful. Loss of a pregnancy is hard enough to go through with the support of loved ones. We have so many friends who have miscarried and told nobody, and I can't imagine going through this alone. I'm grateful we don't have to. Love you all.