Structure

Happy new year! May 2015 be better than 2014 seems to have been for many people.

A few years ago, I heard a suggestion about making new year's resolutions: don't. Instead, pick a single word that will be your focus for the year. Just let it seep into your bones and into the thousand little choices that make up each day.

Of course, this method may not work for everyone; some people have clear goals and only need a push to get moving. I used to be one of those people. In recent years, my goals haven't worked out so well. Drifting unconsciously also doesn't tend to work out well, so last year I tried to compromise by focusing on just one word and concept: courage. It will be structure this year—although courage still applies!

In that spirit, it's time to renew my vow to get some kind of exercise daily, if at all possible. I'll make the commitment through this month (and then, hopefully, recommit). It's not about losing weight or 'getting in shape,' although those things would be welcome. What I need most is consistent self-care, plus the reminder that it's not a luxury. If anything, it's a duty.

So back to the structure of exercise. What I need is the power that comes from doing this one thing every day, not just in spite of but because of the fact that my energy has been so low. Here's why:

• It lifts my mood and energy.
• It trains me to face whatever is here (circumstances and my reactions to them) with mindfulness.
• It renews my commitment to live consciously in this world, despite its messiness and my reluctance some days.
• It transforms my defended numbness into emotions that feel alive.
• It makes me breathe, sweat, and let energy flow in and out. When I let things happen, resistance melts away.
• It reminds me that weak muscles (literally and metaphorically) are strengthened by practice, not by rest.
• It builds my courage to do other difficult things.
• Doing it first thing puts priority on my mental and physical health. I owe this to myself and those I love.
• Doing it every day builds consistency and discipline. If I make exceptions, every day will be an exception. Instead:

Grief-Cleaning, IF-Junk Edition

One productive thing I did do this fall was clean out all the clutter that's magically appeared in my home, in the years that I've been pouring time and energy into other things. Like these things. (BINGO x 12! Yay—what prize do I win?)

Around that same time, I saw the image linked above and realized that I had every single one of these types of "infertility detritus." Even the "lucky" stirrup socks. (Screw you, socks. You're fired!)

The only square I cheated on a bit was the used pregnancy test. In the brief time I was pregnant, I went through a dozen of them—just to make SURE—and saved them for months. But they do fade and get yucky, so I took photos before throwing them out. Photos count, I think.

I'll probably always keep those photos. But why was I keeping three boxes of used needles in the bathroom and expired meds in the fridge? That one vial of Gonal-f way in the back expired 16 months ago.

Good times.

It was easy to get rid of some things, like the needles and the meds. Then I started on the boxes of IF paperwork by sorting them into 10 piles, including info related to finances, medications, cycle details, pregnancy, miscarriage, and so on, plus one pile about holistic strategies. That last one brought on a sad smile. Did I really once think that spicy foods and pigeon pose might get me pregnant? Apparently, I did.

Although I couldn't bear to throw away much of the paperwork, I did move it from the dining room table, where it had been the centerpiece for far too long, to a filing cabinet on the periphery. Maybe someday those files will graduate into the trash. Not yet.

Like the creator of the wonderful bingo card linked above, I've wondered whether "keeping a box of sadness is totally normal." After all, if I ever am lucky enough to get pregnant again, I'm sure the OB's office will gladly give me a new copy of their "Prenatal Nutrition" handout.

So why hold onto this junk now? Because I'm not able to accept the loss? Because these things document how close I came? Because the sheer volume of stuff bears witness to what a long and—whatever the outcome—life-changing journey this has been?

Yes. All of the above.

Silent Night

There's not much to say. What I've been doing this fall has been very distracting (on purpose) but not meaningful (also on purpose). I can't do meaningful now, not quite yet. After the years of TTC, I can't keep forcing myself to focus on things that hurt. So there have been distractions...

And then there are nights like tonight: snow falling, making the city quiet and still. Christmas lights. Memories of a night like this two years ago.

You know how, when someone writes a brokenhearted post, and there's nothing to say because they've just said it all, people sometimes simply write "Abiding with you" or words to that effect? I've felt your presence, abiding with me these past two years, and I'm thankful.

Tonight I'll try to give myself that same gift: turn down the volume on all the junk I've been using to fill up my mind, and just abide with what's left.

How to Look on the Bright Side (Part 3)

This is the part where I try to sum up a lot of thoughts about the "encouragement card" given to a woman by her clinic (Part 1) and the study that led to the card's creation (Part 2). Let's start with the obvious, alright?

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The encouragement card (PRCI) did not work for me.

Apparently, I'm in the minority of women who—given only the two choices that were offered in the study—prefer the PMI affirmations over the PRCI card.

It's not that affirmations like "It's great to be alive" feel especially true right now. Actually, that's kind of the point. I see them not so much as true or untrue, but simply as ideals, maybe even fantasies where I can briefly escape. Living with them for a moment is all that's required. Because it's so easy to do, the affirmations somehow bypass the tangled hairball of thoughts in my head and just make it easier to breathe for a minute or two.

In contrast, the PRCI statements get my guard up right away. They tell me to do something that I don't know how to do, and they make it sound easy.

It's not easy. What ARE the "positive aspects of the IVF experience" or infertility in general? It hasn't brought me the closer relationships mentioned as an example (in Part 2). It has led to some wonderful new relationships, while putting others under strain.

I am aware that just being able to try "the most advanced fertility treatment" makes me compare "favourably with others who are less well off," and I'm grateful for that chance, but I'm also aware that it's only a very small CHANCE to do what most people do naturally. A chance is NOT (repeat, NOT) any kind of guarantee. And when it doesn't work, then what?

What have I gained? About 15 lbs. Also, several containers full of used needles. Possibly, on the best days, a slightly better sense of humor and awareness that everyone is fighting some kind of battle, whether it's visible or not. What have I lost? Most of my life's savings, half a decade of my time, and all of this.

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The intention was so good that I hate to criticize the execution.

The introduction to the study (Part 2) does a good, detailed job of explaining exactly what's stressful about IVF. Because infertility can create so much stress and pain, I'm truly glad to see attention being focused on mental health in this context. These people recognized a need and made quite a serious effort to address it. That's great!

Also, just because the PRCI doesn't work for me doesn't mean it doesn't work. Other patients apparently do feel helped by it to some degree. Honestly, those results rattled me, making me question whether bitterness may be obscuring my judgment. After more thought, though, the way I see it now is just that different people prefer different tools, and the two covered in this study are by no means the only ones that exist.

Even if I can't think up "positive aspects" of IVF—the main way these researchers envisioned women using the PRCI card—it did help in one way. It prompted me to make my own encouragement card (in Part 1), remembering other methods I've used to look on the bright side more authentically.

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But let’s be honest: there are problems with the execution.

I see two problems with the PRCI card and, to a lesser degree, with the PMI affirmations. The PRCI's vagueness and repetition (all the variations on "be positive") are the most obvious issue. Underneath is the unquestioned assumption that being positive should be an IF patient's main mental-health goal.

Isn't it important to maintain a healthy attitude? Well, of course. It's one of my main goals every day, and I'll always be willing to try any strategies that are aimed at genuine healing. ALL of them. The more the better! The thing is, I don't always equate "healthy" with "positive."

In Part 1, two commenters wrote about the need to acknowledge all of our emotions, dark and light, as the only way to get through them (not over or around them), and I agree. Forced positivity can invalidate people's real experiences. Positivity becomes forced, I think, when these impulses are at work in the person who's giving the advice:

• Enforcing a smiling decorum
  This mode prioritizes seeming good over feeling good. Some people are just uncomfortable with grief. They want us to feel better. They may think that by acting like everything's OK, we may come to believe it, or at least we'll avoid bothering anyone else. But it comes to feel draining and fake. Suppressed feelings tend to leak out anyhow, sometimes in more damaging ways.
• Lecturing with "at least" statements
  Saying that we can't be sad because someone else has it worse is like saying that we can't be happy because someone else has it better. Actually, it's possible to feel happy AND sad (or other emotions) all at the same time. Appreciating the good doesn't require denying the rest. Denial just makes a habit of disassociating from reality, which can also interfere with feeling good.
• Blaming circumstances on attitude
  Of course, the choices we make contribute to some of the outcomes we have. On the other hand, sometimes shit just happens. But if people can think up a "reason," they can feel smugly assured that similar things won't happen to them if only they don't make the same "mistakes."

I doubt that the people who developed the PRCI were motivated by the impulses above. They were, I'm sure, sincerely trying to help, and the tool they created was based in part on feedback from the study participants.

But I still worry that the shallowness of the statements in the PRCI promotes putting on a happy face (decorum) more than true healing.

One of the stated intentions was to help people focus on "comparing oneself more favourably with others" ("at least" statements), especially other IF patients. While it isn't inherently wrong, I guess, it hardly seems complete. What I hear is, Hey, we know the situation sucks enough that you need encouragement, but let's pretend it's not true by focusing EXCLUSIVELY on the 5% that's OK. That feels delusional.

Finally, acting as if a simple attitude adjustment is all that's needed may leave people blaming themselves (blaming circumstances on attitude) if they end up still struggling.

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Can I frame all this in a more "positive" way?

My goal is to feel not so much positive as whole, which means somehow integrating the most unpleasant truths in my life without getting overwhelmed by them (lost in self-pity, depression, and so on).

How to do that? Well, I'll start by acknowledging that it's not easy! It's probably the work of a lifetime, in fact. Seeking that balance has been the driving force behind this blog for over 100 posts now, and it feels like I've made just the barest beginning. I'm nowhere near done.

And my personal "encouragement card" (Part 1) is not intended to be the final word. It's the result of one evening's worth of brainstorming. It's an attempt to start a conversation.

So again ... what would you add? What strategies have kept you relatively healthy and whole when dealing with the hardest parts of infertility? Also (and this is much harder than it sounds), can you summarize them in a few words that would fit in a pocket-size list?

What would be on your personal encouragement card?

How to Look on the Bright Side (Part 2)

Last time I mentioned an "encouragement card" that another woman received from her clinic. Now, as they say, here's THE REST of the story!

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I've come to learn that the original card wasn't just one clinic's kind but quick attempt to be helpful. In fact, the card was carefully developed and evaluated as part of a double-blind study.

Researchers at Cardiff University in Wales were hoping to help women find effective ways to cope with the stress of IVF. The goal was to develop a "Positive Reappraisal Coping Intervention (PRCI)" card that was based on respected theories, inexpensive, simple to use, and generic enough to be used by other types of patients later. Here's what the researchers proposed:

"One meaning-based coping strategy that seems particularly likely to make (re)appraisal more positive is positive reappraisal coping, which may be understood as 'cognitive manoeuvres' or cognitive efforts ... that change the meaning of the situation. Finding positive meaning may involve appreciating the benefits that the situation has brought to one's life (e.g. closer relationships), comparing oneself more favourably with others who are less well off, or redefining the situation such that it seems more positive ... individuals may focus more on positive aspects of a situation rather than ruminating about (or conversely trying not to think about) negative and distressing aspects. Such efforts in the IVF context may involve focusing on the fact that the most advanced fertility treatment is being tried, or that a partner is especially loving and supportive."

The research subjects were women undergoing embryo transfer at a large urban hospital in the UK. Of the 55 women, 28 were given the PRCI card and 27 (the control group) were given a Positive Mood Induction (PMI) card. The women were instructed to read the cards at least two times a day during the 2WW, and then evaluate the cards' effectiveness. Here's the content of the two cards:

(source)

Sure enough, the PRCI was rated to be more helpful and suitable than the PMI, and to have more enduring effects. On the other hand, although the women rated the PRCI the highest of the two, their endorsement of it still seemed fairly lukewarm:

(source)

The researchers suggested that the PRCI may work because the "focus on positive aspects of the IVF experience" (using the PRCI) requires more cognitive processing than focusing on affirmations, which may or may not feel true to the individual (using the PMI).

When affirmations don't feel true, they may even be counter-productive. The researchers cautioned that the perceived benefits of the PRCI, in comparison to the PMI, may be due partly to this effect, and/or to the fact that the PRCI simply provides a distraction from worries.

Along with thinking of benefits and repeating affirmations, simple distraction is also a recognized coping strategy. While the researchers found the PRCI to be promising, they also allowed that different people prefer different coping methods.

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Coming next: my attempt to sum up a whoooole lot of thoughts and feelings about this study.

How to Look on the Bright Side (Part 1)

On a private forum recently, a woman who's been TTC for a while wrote about receiving an "encouragement card" from her clinic. It was a pocket-size card that listed these suggestions:

1. Try to do something that makes me feel positive.
2. See things positively.
3. Look on the bright side of things.
4. Make the best of the situation.
5. Try to think more about the positive things in my life.
6. Focus on the positive aspects of the situation.
7. Find something good in what is happening.
8. Try to do something meaningful.
9. Focus on the benefits and not just the difficulties.
10. Learn from the experience.

Do you see a pattern here? Except for numbers 8 and 10, these tips all seem to be variations on "Be positive." (If there's a difference between "See things positively" and "Look on the bright side," it's too subtle for me.)

Several of us on the forum had the same reaction: after the second or third cliché, we started feeling put off, maybe even patronized. We heard echoes of the infamous "Just relax!" Because while everyone agrees on the need to, say, "make the best of the situation," the huge daily question is HOW.

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Of course, to be used in this format, the "how" needs to be as brief and universal as possible. I know how hard that is, and I appreciate the clinic's effort, since (in the interest of being positive, not just pointlessly snarky), I took a shot at it myself.

How to translate platitudes into actions that I actually know how to DO? Here's what's worked for me personally, or at least as much of it as will fit into a tiny, pocket-size list. (Obviously, whole books could be and are written about each point, and your own points may differ!)

1. Focus on the things I can control, and act decisively.
2. Maintain balance by continuing to do non-TTC-related things that make me feel good.
3. Maintain perspective and connection by sharing support with others who are also struggling in some way. 
4. Allow myself to hope for success, to the extent that doing so feels more uplifting than painful.
5. Consider that what seems like a setback now may have some positive results that are not apparent yet.
6. Consider that, even if I don't have success, growth and joy are still possible in my life.
7. When good things happen, however small, pause to savor them in that moment.
8. Seek out things that make me laugh, not to put on a happy face, but because it feels freeing and brave.
9. Notice what tools help me feel and function better, and make them priorities.

I can only come up with nine points. Is there something you would add, to make it an even ten (or more)?

Also, coming next: some surprising background on the encouragement card!

Well, That Would be Nice

Last night, a friend and I ordered Chinese takeout for dinner, then unwrapped the fortune cookies that came with the meal.

Her fortune said, "When people flatter you, keep your feet on the ground." Um … OK. If you insist.

Then I opened my cookie, and TWO pieces of paper fluttered out into my lap. I picked up the first one:

Whoa.

THAT'S a change of tone.

Then I picked up the second piece of paper:

A dopey grin spread across my face. I don't believe it for one moment (Has God EVER granted EVERYTHING a person wants? Would that even be a good idea??), but logic didn't stop me from taking a magnet and sticking the two fortunes on my fridge.

More About Embryo Adoption

Most people who go through IVF fill out a form that asks what they'd like to do with any unused embryos, which might be left after a cycle succeeds and the family is complete. The choices are to thaw them without transfer, donate them to scientific research, donate them to someone else, or postpone a decision by keeping them frozen indefinitely.

I agonized over that question. I even asked about options like choosing not to fertilize all retrieved eggs, if I happened to produce more eggs than expected (HA!). In fact, one thing that appealed to me about no-stim IVF was the ability to control the number of embryos created (one at a time, with emphasis on quality).

Meanwhile, doctors all but laughed out loud, emphasizing that I would be lucky to end up with that "dilemma," that I'd more likely end up with no viable embryos at all. They were right about the odds, of course.

But I still think it was right to take the question seriously. While I liked the idea of donating any unused embryos to someone else who was struggling to conceive ... it was a BIG decision. Wouldn't I always feel some responsibility toward any child created from my genes and my actions? Well, yes. I would.

So I appreciate what people go through when they make this decision. I still think that embryo donation / adoption is a beautiful (if not always simple) option. And now, just maybe, I may be ready to take the next step toward the "possible recipient" side.


Types of Donation / Adoption

I'm no expert (so please point out and forgive any mistakes), but I'll try to explain what I've learned so far. This information is specific to the US. I'm not sure how much would apply in other countries.

First, some terminology. I think of "embryo adoption" as an umbrella term to describe this whole process. Legally, though, it's not really an adoption. It's considered to be more like a transfer of tissue, like sperm or egg donation.

"Embryo donation" and "embryo adoption" are sometimes used interchangeably, or used to describe two ends of the same process. On the other hand, "embryo donation" sometimes refers specifically to donations done through a clinic, while "embryo adoption" refers to those done through an agency or through individuals (who may know each other or meet on a website that matches them).

The arrangement may be anonymous, and it typically is when done through a clinic. It can also have some degree of openness, especially when done through individuals or an agency. The parties specify the type of contact they'll want to maintain.

As with traditional adoptions, agencies require home studies and take care of logistical and legal details. Recipients who don’t use an agency coordinate and pay for these things themselves.

Once a match is finalized, the recipients may ship the embryos to their own clinic or travel to the donors' clinic where the embryos are stored. Then a frozen embryo transfer (FET) is done, placing the embryos into the recipient woman's uterus.

Typically, anonymous arrangements through a clinic cost the least, and agencies cost the most. Costs vary quite a bit, though. They may include agency / legal fees, several months of the donors' costs for frozen storage, shipping / travel, and FET. Recipients do NOT pay anything for the actual embryos. For the whole process, I've seen estimates as low as $4,000 and as high as $17,000.

Benefits and Drawbacks

Frozen embryos that already exist get a chance at life. On the recipient side, the "adoptive" mother has the chance to be pregnant with the child. While she's not genetically the parent, she can make sure that the baby gets good prenatal care, and her body may influence the baby's epigenetics. They have that extra time to bond. Legal details are settled before birth.

However, there are far more people waiting to adopt than there are embryos available. (Most of the embryos in frozen storage belong to people who may not be done building their families, who don't intend to donate, or who aren't aware that donation is an option.) When recipients go through a clinic, a wait time of a year is typical. When individuals find each other, the wait time varies greatly; it may be much longer or much shorter.

When recipients don't use an agency, they need to coordinate details like shipping / travel and legal contracts themselves. It's doable; it just requires extra research and work on top of the normal steps required of fertility patients.

And like any fertility procedure, the FET has no guarantees. It may not result in a birth. It's possible that the embryos won't even survive thawing. Since the healthiest embryos are used first in IVF, the ones that remain are often not the most viable. After all, they come from other people who have used IVF to treat their fertility problems.

In cases where donor eggs and/or sperm were used, the information that's available about the donors may vary. Donors may be anonymous or known. They may have come from the most reputable sperm or egg banks, or not. They may have donated in other countries, where the screening requirements are different from those in the US.

Because of concerns about the embryos' origins, many clinics in the US decline to offer FETs with donated embryos. The recipients will likely need to travel farther to a new clinic.

My Thoughts

While the drawbacks are significant, so are the benefits. After looking closely at both, I'm still feeling drawn to take the next step and just see what happens.

My first fear was that finding a match would take an extra long time because I'm single. I also felt some resistance to being questioned on my "worthiness" as a mother. Of course, there will be questions galore (as there should be) if I choose to become a foster parent, which is another option.The resistance comes from years of fertility treatment, with its raised and then lost hopes, lost privacy, and need for a whole team of people to be involved in the most intimate matters. I'm just tired, you know?

But don't get me wrong—I think that questions are essential in adoption. If I were an embryo donor, I would have questions about the recipient(s), too! As a recipient, I would have questions I'd like to ask the donor(s). I would want it to be a dialog and a match that feels right for all involved.

As you can probably tell, I'd be happy with some degree of openness—whatever is comfortable for the donor family. I would also respect the preference of some donors to remain anonymous.

Looking through a website that matches donors with recipients, I was struck by the variety: hetero couples, lesbian couples, singles, secular, religious, very particular or very open about their recipients, wanting basically no contact, wanting to go on vacations together... I was also struck by the one thing they all shared: like me, they've ALL been through the infertility war.

I found myself relating to many of these people, even sincerely LIKING them. Fears of lost privacy gave way to excitement over what we might all gain.

I've always preferred to deal with people personally (for example, in college years, renting "in-law" apartments in private homes rather than in complexes, even if those situations were harder to find). So posting a profile on a website and responding to others' profiles feels like the natural choice.

I think I'm going to try it!

Four Options

Since my last cycle, the spring flowers have (long ago) come and gone, and April has evolved into the 90-degree days of mid-July. I can't stay frozen like this all summer. It's time to make decisions, or inaction is going to end up making them for me.

So … after letting go of these options for parenthood, at least for now, which ones are left? There are four that come to mind:

• Live without children and put my energy toward other things. I'm putting this one first to make the point that it doesn't have to be a last resort, a punishment I feel sentenced to by fate, but can be an actual choice. I can choose to step off the hamster wheel of trying and waiting. I can still be a mentor, a Big Sister, or a court-appointed advocate for children if I choose.
• Continue to TTC with my own eggs. Yeah, I know. Here's the thing (well, one big thing that's been a factor): I'm not just an only child, but the only grandchild on both sides of a close-knit family. The thought of it ending with me feels deeply wrong on a level that I've never felt before. I don't want to be delusional, though, to keep trying beyond all reason and at all costs. Let's just say that I'm very conflicted here.
• Look into embryo adoption. What a wonderful idea. There are concerns—the wait for a match, the cost, the need to research an entirely new set of issues. Also, I'd need to change clinics again. (Neither of my clinics will transfer donated embryos, because they believe there are too many unknowns about the embryos' origins.) That said, I may still sign up on a website that matches donors and recipients. If a match that feels mutually right comes along, well, wow. I would be unspeakably grateful! If it doesn't come along, I won't be up for more years of trying to make it happen.
• Become licensed as a foster parent. One thing that excites me about this option is that it can throw me into the parenting deep end right away. And while there's no guarantee of eventual adoption, the possibility is there. But I can't proceed until things are more settled. I don't see fostering as another path to parenthood so much as a separate thing, deserving of its own sincere commitment. And there are other hurdles. Let's just say that I'm very conflicted here, too. 

Contraction / Expansion

Today I came across this post, which (like so much of Dr. Cacciatore's writing) was thought-provoking and, well, validating. She sees grief not as a state to be escaped or fixed, but as a natural—even "evolutionary"—process. I'm not at that stage of acceptance. Still, her words give me hope:

"Contraction only will leave us unmovable – paralyzed with pain for the duration of our lives, fearful of love and life and terrified of more pain. This is a kind of Death for us. Expansion only is a futile endeavor as well, mostly because it is a ruse. It is often a state of self-delusion and inauthenticity that will leave us unsatisfied with our identity, soul-less, and worn out from persistent pretense. The natural course of grief, as in nature, is contraction-expansion-contraction-expansion-contraction-expansion..."

Almost like birth.

"This is the wisdom of the Universe, the wisdom of your body, the wisdom of your heart.

Trust it, and it will save you."