Headache(s), or: Who Am I Without My Pain?

I've been periodically dipping back into my tape flags in Weaving a Family, and I've written many a dead-on-the-page false start in the last couple of months. This morning I sat down and went through my remaining tape flags, and realized that I don't have anything else to say back to that book right now. There are some topics in there, like the idea that we have an obligation to make our children culturally black, that I may find myself writing about someday. But for now, I'm done with that piece of this project.

What I want to talk about now is my health, because I find it interesting. You may not, in which case stop reading now, do something else more fun, and wait for another book post or cute story about my kids.

Many people know that I have chronic pain; I have had a headache for about fifteen years. Not "headaches." One headache. For fifteen years. It gets better and it gets worse, but it never goes away. Headaches are notoriously difficult to treat, but over the years I've had my share of tests and scans and trial medications. I've done physical therapy and had massages. I've meditated. I spent a week at a Pain Clinic ten or eleven years ago; that's where they send you when they decide you're going to be in pain forever, so you can learn how to manage it and live your life.

For a long time, I just lived with my headache, doing the things I knew helped, getting on with my life. My headache seemed complicated to me: my allergies affected it, for instance, but so did muscle tension (or it caused muscle tension--so hard to say). So does my tendency to grind my teeth, and TMJ problems. Getting treated for a vision condition called Vertical Heterophoria last summer was one of the most promising things I ever tried, but the improvement from my fancy new eyeglass lenses, though dramatic, was ultimately short-lived.

And then, in November, I had breast reduction surgery. I had thought about it off and on for awhile, but starting last year, all kinds of people I consulted for my well-being talked to me about it. My Pilates trainer, for instance, who told me that my efforts to improve my posture and mobility would be an uphill battle as long as I was wearing a K-cup bra, and a manipulating osteopath who undressed me, watched me stand and walk, and then said, "How attached are you to your breasts?"

Not very, as it turned out.

Now, I had heard from many women about the joys of breast reduction. "Your clothes will fit better!" they told me. "Your posture will improve! You won't get so many backaches!" So I expected some changes.

What I did not expect was that I would wake up from the surgery, and find that the constant pain, tension, and inflexibility in my neck muscles would be gone. Or that over the next few weeks, I would discover that the left side of my head, which for 15 years had been pain's last stronghold, the place that always hurt even when pain had receded from everywhere else, had also, for the most part, stopped hurting.

My head didn't stop hurting. But a headache that had always centered on my left temple moved to the top of my head.

What's more, it became clearly sinus-related.

This is what is interesting: it's as if removing the millstone I was carrying around my neck cleared away a layer of the pain's causes, like draining a lake to reveal the dead fish and trash heaped on the bottom. This is actually a big improvement; instead of this chaotic and confusing mess of pain from multiple causes, I can now identify pieces of it: this is because I was grinding my teeth; that is because my sinuses are really acting up.

Now, these identifiable pieces also feel more treatable. My doctor and I are beginning a plan to try to deal more effectively with my allergies, for instance--and we'll be able to tell if it really helps, I think, because this sinus piece of the pain will improve. I'm going to ask my dentist to check my bite guard; it might be time to go back to the TMJ specialist I consulted last spring, who suggested I start by getting checked for Vertical Heterophoria before we proceed with addressing TMJ issues.

The other strange thing that has happened since my surgery is that I seem to be having migraines, about one every two weeks. As migraines go, they're really not bad; I've seen really bad ones, taken David to the ER for them, so I know. Yesterday's headache, for instance, responded to migraine medicine and although I felt tired and a little out of it, I had a pleasant evening. Now I wonder if I was always having migraines, too, if they corresponded to some of my "bad patches," if that wasn't the reason that migraine medication sometimes--sometimes--helped if I was having a particularly bad head day.

Finally: sometimes, in the last 10 weeks, if I haven't especially been grinding my teeth and my sinuses are pretty clear, it has almost seemed like I didn't have a headache. "Do I not have a headache?" I would ask myself, and do a little inventory of my head. Always, deep deep in the stronghold of my left temple, I would find a starved and shivering remnant, a little bit of tight muscle or tendon, a spot that hurt if I pressed on it. "Does this even count?" I would ask myself. "If someone who hadn't had a headache for fifteen years had this very same tender spot, would they think they had a headache? I doubt it."

Yet I found--find--myself strangely unwilling, on those days, to say I don't have a headache. This is a very interesting phenomenon. You'd think I'd be dancing in the street, releasing a thousand balloons, calling everyone I know: "I don't have a headache!" You'd be wrong.

I can think of a few reasons why I might be unwilling to declare an end to pain. One is just that it's hard to let myself hope after 15 years. I've had promising stages before--right after my first set of prism lenses last spring, for instance--and the end of a promising stage is crushing. So I am not wanting to look head-on at the possibility of not being in pain; I'm only willing to kind of glance at it sideways. I'm not going to get my hopes up, no sir. I've been down that road before.

Another is that pain has been a part of who I am for a long time. Almost my whole relationship with David, for instance. Constant pain makes everything I've accomplished in the last 15 years: grad school, three kids, 13 years of college teaching, performing, leading workshops, babysitting, traveling, traveling with the three kids--much more impressive. I remember a few years ago, I threw one of the boys a birthday party in the middle of a really bad patch. There were, oh, eight kids at my house, and we did all the usual birthday party things: playing games, opening presents, eating cake and ice cream. When the last of the kids had been picked up, I turned to David, said, "I am a fucking hero," fell into his arms, and burst into tears.

Anybody can throw a party for 8 four-year-olds. Do it with the equivalent of a moderate migraine headache? That you've had for more than a decade? Best mom in the world!

I remember when I was being (very successfully) treated for a pretty serious anxiety disorder. When it was coming up on time to leave treatment, my therapist asked me to spend some time thinking about any reasons why I might not want to let go of my anxiety. That wasn't actually too much of a struggle for me--I was glad to put days when it was a triumph to shower, braid my hair, and walk to the mailbox behind me.

On the other hand, after that kind of drama, normal life, with all its unremarkable hair-washing and mail-fetching, can look a bit...pale.

I actually feel that more now with my pain than I did with my anxiety. Is it possible I actually feel some resistance to giving up being able to say, "I've had a headache for 13 years...14 years...15 years..." What if I never get to say "16 years"? Do I think I will somehow have failed to set a record? Was I planning a big party for our 25th anniversary?

I know that my friends and loved ones are eager to celebrate with me, should I become significantly pain-free. But will I miss their sympathy? Their admiration?

Will I lose some kind of moral high ground? Will I become...ordinary?

Will people expect more of me? Will I be able to live up to their expectations? Will I let everyone down?

What if it turns out that I really cannot do any of the things that I have thought I might be able to do, if only I didn't have this damn headache?

I'm scared that my optimism is misplaced, that this is just going to be another glimpse of sunshine through the endless clouds. I'm also scared that my optimism is not misplaced, that I am on the verge of moving into a new world, and that I will not know how to live in it.

Kicking the tires before you buy (p. 71)

Just as one would take a car off to one's own mechanic before purchasing, some potential adopters take the baby in for testing before final papers are signed. in a thoughtful and wide-ranging panel discussion on the ethics of genetic testing in adoption...a number of issues arose. One, of course, was the parity with prenatal testing: if parents by birth can test for and avoid a particular condition, then surely adoptive parents have equal rights, too?

... One participant in the discussion...compared this kind of testing with kicking the tires of a used car, or... taking a used car to one's own mechanic before buying it.

I don't think I know anyone who subjected their baby to extra testing or genetic screening before an adoption. But I do know that when our adoption agency called us with a possible match with Yehva's birthmother, they were honest with us about K.'s drug use. "She denies drinking," the director said, "and I'm inclined to believe her. Most people tend to choose one or the other--pot or booze. Of course, you don't have to make a final decision until after the baby is born; you'll be able to get medical information then and see how she's doing."

I got off the phone feeling a bit uncomfortable with the idea that we could change our mind about this baby after she was born and we were able to find out whether she seemed "defective" or not. A friend of mine described to me, a few months ago, one of her conversations with her daughter's birth mother, saying, "we told her we were committed to the baby, so long as it didn't have any disabilities we felt we couldn't deal with."

That sounds crappier than I mean it to--I don't mean to pick on my friend at all, only to say that this is one of the realities of adoption: that you get to meet the baby before you make a commitment. It's a luxury biological parents don't have.

I didn't want to face that decision, and was glad we dodged it by virtue of Yehva being perfectly healthy and sound. I did not want to discover that I was a person who would discard a baby for imperfection. And yet, at the same time, I recognize the many forces that would go into the decision, and sympathize with any parent who chose not to proceed with an adoption. Let me tell you a story.

When I was pregnant with Eric, I could not imagine terminating the pregnancy for any reason. I had an acquaintance who'd carried a baby to term knowing he wouldn't survive long past birth; he spent his entire short life outside the womb cradled in her arms and died peacefully there. I could see myself making that choice, too. I could not imagine myself terminating a baby for having Down Syndrome, or even more severe disabilities. David and I are committed to disability rights and generally comfortable with disabled people; we, especially David, would be good parents for a disabled child.

And then I got pregnant with Carl, and I felt differently, for a couple of reasons. One was that I was 38 years old and really wanted a second child. If I waited out a doomed pregnancy, and then waited to recover enough to try again, I might significantly reduce, or lose, my chance for a second baby. The second time around, I probably would have terminated a pregnancy if had I learned the baby could not survive past birth.

But the disability question became more vexed as well. I had a child already, and a responsibility to him. What if I found out my second child had a disability that would require extraordinary care, a hugely disproportionate measure of our resources of time, energy, and money? Again, with Eric in the picture, the equation shifted. I didn't know what I would do--I didn't think, "Oh, I would definitely have an abortion in those circumstances." But I didn't think anymore that I definitely wouldn't either. A family that learns the baby they plan to adopt is severely disabled has similar factors to weigh, as well as listening to their hearts. This doesn't make them bad people.

No one is allowed to make a binding commitment to adoption until after the baby is born; in most states, there's a waiting period after the birth before the birthmother can surrender her parental rights. And adoptive parents aren't committed until later than that. Even after we'd taken legal custody, when it became clear that problems with our home study were going to delay our clearance to bring Yehva home to Michigan (she and I spent two weeks and about $3000 correcting the problems, during which we had to stay in Illinois), the director of our agency asked me, "Do you want to give her back?" I was affronted. "We didn't promise to be this baby's parents only as long as it was convenient and didn't cost money," I fumed to friends.

But we could have. At some point--finalization, maybe? I don't really know-- the commitment is irreversible, it becomes the same commitment biological parents make. Of course, the commitment becomes irreversible in our hearts long before it reaches that point legally. But the gap between the birth and that point of no return introduces the possibility for adoptive parents to look for perfection, for the baby who is not inconvenient and doesn't cost money.

Both prenatal testing, and the evaluation after birth of babies placed for adoption, cut two ways. On the one hand, they allow parents, both biological and adoptive, to opt out, at least some of the time. On the other hand, they make the birth or the adoption of a disabled child, or one with a genetic predisposition to disease, a choice.

Rothman goes on to say, "In other words, it's not just that parents can choose not to raise a disabled child; it's that they can be judged for doing so."

I have seen this in action second-hand, in the community reactions to a couple who had a third child while their first was in treatment for leukemia. The new baby was severely disabled, and there seems to have been little compassion in many people's responses. Rather, there was a mix of "what business did they have having another baby," and "they got what they deserved." I have actually heard people say, "How did a baby like that get born, in this day and age?" about disabled children. That thought actually went through my own mind when I met a family at the park whose youngest son had no arms or legs.

This has gone all over the place, as so many of these entries seem to. But you see how tangled the skein is--pull on a thread and you don't know what you're going to get. I thank you for thinking about this with me.

Erasing the Birthmother, pp. 46-47

It is not only the availability and almost-whiteness of the children that draws Americans to international adoption; it is also the almost complete erasure of the mother. The children appear to come from orphanages, not mothers. Barbara Yngvesson did a study of a “roots” trip, a journey back to the land of origin for international adoptiees and their parents. She studied a trip to Chile by Swedish adoptive parents and their children. Yngvesson quotes a Swedish social worker who recognizes a tension inherent in such a journey: a roots journey to the country is one thing; a journey to the mother would be something else again. Background and country and decoration are all fine—they are the sanitized “ethnicity” we find so charming. But the reality of a grieving mother, a woman who birthed and bled and lost, is far more than most adoptive parents want. Some, perhaps particularly the lesbian mothers who are drawn to Chinese adoption because it rescues girls qua girls, have particular reason to feel vulnerable. They know that whatever power an American birth mother might have could be used to threaten their already threatened families, and so prefer the anonymity of the Chinese adoptions. And some adoptive families to actually seek out birth mothers. But most do not, and adoptions that promise anonymity are marketed for their reassurance to adopters.

In that way, by denying the mother herself, many adoptive parents participate in this erasure of mothers and simultaneous commodification of children. Adoptive parents, and I myself am one, bristle and feel genuine anger and revulsion when people ask about the costs of adoption, imply the cost/worth of the child. But only a comparative few of us have taken that position to its logical conclusion and opened adoptions up.

Open adoptions are becoming more common; there is quite a lot of research that shows they are better for both birthmothers and adopted children. But they can be messy. In general, a birth family is going to be less stable than adoptive families; they may have different ways of relating that are challenging to middle-class people used to middle-class ways. There is no guarantee that birth families will negotiate the challenges of adoption in good faith.

When I was researching adoption, I spent time on a bulletin board for adoptive families. I was alarmed by some of the stories I heard of challenges with birth families. One woman was accosted at the mall by relatives of her birthmother and accused of stealing the baby; another birthmother regularly showed up for visits with a string of friends and relatives in tow, showing off “my baby” and calling her by a different name than the adoptive family had given her; birthparents disappeared without warning after having been part of the child’s life for years.

On the other hand, there were wonderful stories of adoptive families and birth families sharing the first few days of the baby’s life and struggling together through all the joy and sorrow of it; of birthmothers and adoptive mothers sending each other mother’s day cards; of children happily spending time with their biological grandparents and cousins. I was terrified of the risks associated with open adoption, but at the same time dreamed of a good open adoption, and envied those who had them.

I didn’t know what to think about open adoption, and when our agency asked what degree of openness we wanted, we said we’d consider it on a case-by-case basis and follow the birth mother’s wishes. But I was relieved when K. chose letters and pictures only. I’d have waded into the mess, certainly; I was glad not to have to.

At the same time, though, I feel a loss. K. was supposed to give us a picture of herself; she didn’t. I wish I had one for Yehva. I still harbor some hope—more in the realm of fantasy, really—of more contact between us and Yehva’s birthparents, When it was time to send this year’s update to K., I sent pictures to Yehva’s birthfather, too, to the address he gave in the court papers, and a note inviting him to contact us through the agency if he wanted us to keep sending yearly reports, or if he wanted to write to Yehva or send a picture. I end every letter to K. with the reminder that the agency will forward letters to us. But I don’t expect to hear from her, and I doubt she’ll be able to make the kinds of changes in her life and behavior that she would need to for us to open things up beyond that—to plan a meeting, or allow a visit.

I don’t think Rothman is wrong about the erasure of the birthmother. It would be a lot more comfortable not to have to think about K.; I don’t want to have to think about her broken heart, but I also don’t want to have to think about Yehva, three days old and withdrawing from drugs—her hospital record is hard to read, two days of “took 35 cc of formula, good suck and swallow reflex, infant alert and pink, sleepy most times, WD [withdrawal] score 2-3.” And then suddenly: “WD score 14-17. Baby has been awake, crying and tremorous, baby has slept little since 1500, not consolable. Resident MD notified. Will continue to monitor, consider morphine if WD persist.” And then, finally, after about 36 hours: “Baby is sleeping comfortably in nursery. Feeding isomil 40-45cc. Alert and pink. no signs of distress.” And a few hours later: “doing well. DCFS has approved adoption; discharge patient to home today.” “Home today.” That was me and David and the boys and Uncle Scott in a hotel suite in Oak Park, Illinois: home.

However: in Rothman’s narrative adoption is something that happens between mothers. She doesn’t talk about birthfathers, and the near-conspiracy to pretend they don’t exist, among agencies, adoptive parents, and even the birthmothers themselves; and by not talking about them, she participates in the erasure. Our own birthmother lied about the father of the baby, turning him from a man she had lived with for six months into a one-night stand whose name she never knew. This is not uncommon, and it led directly to the 22 months we spent fighting the birthfather’s attempt to gain custody of Yehva when he later learned she'd placed the baby with us.

I don’t like to think about him too much, either. Or, rather, I do, in a certain way. I like to think I know him and that his lack of fitness as a parent is obvious. And maybe it is: he’s young, poor, jobless, inarticulate. Much of our custody dispute hinged on his failure to fill out forms correctly, to read instructions and meet deadlines. I felt sorry for him, and at the same time thought, “Anybody who can’t show up for a hearing they think is the most important thing in their lives is not going to take good care of a child.” In fact, I held it against him that he said in his deposition that he had no plan to care for her, that she would go to his mother.

“It’s just all about ownership for him,” I thought, “about male ego. He doesn’t really care about the baby; he’s not really interested in her.” This was very clear in his deposition, when he answered questions about why he thought he should have the baby by saying, “Well, that’s my seed!” and “That’s my shorty.” I remembered him saying these things, but I didn’t want to misrepresent him here, so I dug into my six-inch stack of adoption paperwork and pulled out his deposition, to get exact quotes.

And he did say, ‘That’s my seed.” He did say, “K. sold that shorty for $1500.” He did say that he had no means to care for the baby, and would leave her with his mother. He did say that he called the agency repeatedly and was abusive and profane: “I guess I maybe made 15 calls to the agency, you know, saying give me my damn baby.”

I remembered all of that exactly right.

What I forgot was this other stuff. I forgot that he also talked about commitment, to the birthmother:

K. just starting, you know, smarting off or something but I never intend to throw her out or nothing, you know, I always be, you know, I told her, when we first got pregnant, I’m going to be with you, I want to marry you and everything, you know, because you got my shorty.... I never knew she had any doubt about the shorty, you know.

And to Yehva:

Q. If this court should somehow find that indeed it is in the child’s best interest that you have custody, where would this child live?

A. For right now with my mother.

Q. OK.

A. For right now. When I, you know, everything get better for me, we live together. I was going to school though, you know, when she was in K.’s stomach, I was still going to Malcolm X.

He was sad:

A. K. calls. I don’t say—I didn’t answer, I say she calls.

Q. OK, does that mean if she calls you you do not talk to her?

A. No.

Q. OK. What do you do when she calls you?

A.: Look at the number.

Q. OK.

A. And think about my baby.

And finally, he said this:

That’s my daughter, ma’am. She belong to me, ma’am. I want her to know—I love all kids. I planned this baby since the beginning. I want my daughter, you know.

I liked C. better when I only remembered his anger, his repeated assertions of ownership, his “that’s my seed.” I let myself forget that he also talked about love, about commitment, about liking kids. That he wanted Yehva to know he loved and wanted her. This is not what I meant to write about today; I meant to be all theoretical about notions of ownership. I meant to be able to dismiss C. because he saw Yehva as a possession he was entitled to. I didn’t mean to look back into the deposition and discover that I mis-read it a year ago.

Listen: it’s 61 pages long and I highlighted the parts where he comes off like an asshole so I could show them to my friends, but I’m not even sure I saw the parts where he comes off like a person who has lost something he cares about and is in pain.

But I saw them today. I saw them and it broke my heart. And I wondered for the first time if we did the right thing in fighting for custody. I had never doubted it; I had never considered any possibility but that Yehva belonged with us and had to stay.

I’m not saying we were wrong. I know Yehva is better off here, better cared for, more secure. I know that C. failed to do the things he had to do to protect his parental rights, and his prospects as a parent are not great. I know that I fought for custody in part because I feared that to let C. into Yehva's life would be to let K. in, too, and that would be dangerous. But I am saying--I'm sorry. I am sorry.

I know that some of my reason for reaching out to C. with pictures and a note is not just compassion for him. It's the desire to make things right for myself by making things somehow OK for him—to un-break his heart and in the process resolve my own remaining doubts. A birthfather at peace is a burden lifted from me.

OK, I’m going to go have a little cry and say a little prayer of healing for C., and for forgiveness for me. And then I’m going to put Yehva in the bath and watch her have fun playing in the water. And them I’m going to oil her up, stroking every little bit of her until she shines, and get all the tangles out of her beautiful thick hair. Precious, precious, I’m going to say with my hands. Loved, loved.

And someday I'll tell her: I have a message for you, from your birthfather.

We do the best we can in a fallen world.