Monday 18 February 2013

The "Pain Olympics" and learning from others

I first came across the term "Pain Olympics" in Melissa Ford's excellent book Navigating the Land of IF: Understanding Infertility and Exploring Your Options. In Chapter 1 Melissa indulges in a little "rant" (her word):

People of all kinds end up in the Land of IF. And whatever your actual reasons for being here, in the larger scope of things, it doesn't matter. Over here, we're all Iffers. Now, perhaps you agree with that concept in theory, but secretly, you still harbour some resentment toward certain  islanders who - as far as you're concerned - don't have it "quite so bad" as you.
Let me be very clear on  this point - I am officially declaring a boycott on the "Pain Olympics" .... (page 12, 2009) 

Melissa goes on to spell out why competing in the Pain Olympics  is a  lose-lose scenario.  Basically, competing in the "Pain Olympics" means any kind of comparing oneself to others, and/or comparing different kinds of (unpleasant) situations, with the purpose of reaching a judgment that one kind of  pain is more painful than another kind (the pain could be physical but most often is emotional pain caused by inability to conceive, miscarriage, baby loss, and all the shades of grief that colour the Land of IF.)

 When I read this chapter I hadn't thought much about Pain Olympics. I'm a recent Iffer, and although I'm working through some confusion and mental adjustment, I wouldn't say I've experienced much emotional pain. So I'm certainly not going for a gold medal in any competition. And I would  like to think I'll get off the island mostly unscathed, although I don't believe that I will.  The odds are clearly against it.

But reading the book, and later some of the more in-depth discussion on Stirrup Queens (see here; also Melissa links to here,  here and  here for more background) did get me making some connections with how we tend to react to grief, loss, and misfortune/mishap in general.

I've noticed people rely very heavily on comparisons for comfort and reassurance. "That X happened is bad, but at least Y didn't happen. The fact that Y didn't happen makes X look much better." This is OK if we're talking of fairly minor mishaps, for example: It's too bad that I skinned my knee when I fell, but it's good that I didn't break any bones.  It's too bad that I got in a fender-bender, but at least no one was hurt. However, this way of thinking breaks down when you're dealing with something that really is the worst case scenario. Last year my stepmother-in-law's son was killed in a car accident. There's no "but" for her. It really is as bad as it gets. What do you say to the person who lives with the worst thing that could happen? 

Confronting grief and loss seems to have somehow become a theme the past few months. I think it started with my stepbrother-in-law's death, and then one thing after another pushed me to contemplate mortality.  For some people, the internet has become a public grieving space, in addition to funerals and family gatherings, so I have been able to "participate" in that way as well as in the more  traditional ways.   A former colleague of mine passed away from cancer in 2012. Then a singer from a band I adored as a teenager also died from cancer.  My brother-in-law's fiance's mom (they are to be married in a few months) is facing a terminal illness.   I happened to re-connect with a fellow student from 10 years ago (we were not close at the time) whose brother died suddenly last year. She is a writer and wrote about her grieving online. Then, not least of all, there are the IF blogs I am reading.

I read a lot of blogs, but I have to admit I seem to have been reading a lot about baby loss. Maybe it's just because I've been thinking about death in general and trying to understand how we deal with it. For many years of my life I really didn't think about death at all (I'm lucky to have experienced very few deaths.) Now something has changed. I haven't had a baby of mine die, but maybe being a witness to death and confronting an IF diagnosis has driven some point home. Or maybe I'm just really scared.  Scared and  just want someone to please try to explain all this to me.

It's odd the things you become  grateful for at different points in your life. When we first started trying to conceive, and even before, I thought it was kind of a bummer that so few of my close friends and family have babies or children. I have no experience with babies and thought it would feel lonely to be the only one with a baby. Now I'm glad that so few of my friends have children - most by choice, some I'm not so sure of - because I'm not constantly surrounded by moms and babies. There are no close or even close-ish family members with children either, although there are a few weddings scheduled in the next couple of years so I am sure babies will  be the next thing to happen. Mr. Turtle and I still might be the first to have babies, but if things don't go smoothly it's quite likely others in our family will beat us to it. (How stupid that sounds. It shouldn't matter, should it? and yet it's one of those things that I think of. That we "should" have been first and yet we likely won't be.)

Another thing I'm grateful for is that I did learn a few things about infertility and loss before any  of this became important, and before having children was anything more than a vague theoretical maybe in my life. I read about IVF for the first time in a magazine article back in high school. Much later I read a memorable article from a man's perspective (I can't remember the writer's name, but perhaps I will  find it somehow: he is a very good writer.) I must have read a lot of other information here and there, because it was definitely on my radar. Of course I felt like a bountiful woman and assumed that if I had no children, it would only be by choice or because I couldn't find a man I would marry.

The most poignant account of loss  (until discovering blogs) that I can remember reading, however, is from an L.M. Montgomery novel called Anne's House of Dreams. Maud is famous as the author of Anne of Green Gables. Anne's House of Dreams is sequel #4 of 8. I read all the books as a tween. House of Dreams takes place the year after Anne and Gilbert are married. They buy a little house by the seashore and are serenely happy. But the book develops some pretty dark and intense themes. Anne is a famously social character, but she is quite isolated in her new home. The only friend her age that she makes is a strange and tormented woman called Leslie. Leslie's life has been turned upside down by several turns of bad luck (Ch. 11: The Story of Leslie Moore) including her brother's death in an accident, her father's suicide, and to top it off an abusive marriage to a sailor who ends up mentally disabled, requiring her to nurse him.  Leslie and Anne's friendship creates one storyline in the book. Anne is puzzled by Leslie's erratic behaviour; one day  she seems to like her, the next day she acts angry and rude. Anne knows Leslie's history and feels compassion, but she can't quite figure out how to relate to her  friend.

Then comes the chapter Dawn and Dusk (ch. 19). Dawn and Dusk describes the birth, and death the same day, of Anne's first child. I found this chapter so terribly sad as a child. When I reread it as an older person, I felt reassured somehow that if Joyce was born in my time, she would have lived. The reason for her death is that there is something wrong with her lungs. She may not have stood a chance as a home birth in a P.E.I. fishing village, but in the age of neo-natal intensive care, incubators, and respirators...the chapter would have had a happy ending. Re-reading it now, I realize that is not entirely true - the worst case scenario does indeed still happen, and  Anne's story and emotions could have been ripped off of any blog updated yesterday.  The sequel, so to speak, of Dawn and Dusk is in the chapter Barriers Swept Away ,where Leslie confesses to Anne how jealous she has been. They also discuss how Anne's bereavement - much as both regret it - has allowed them to be closer.

It's a bit uncanny how House of Dreams echoes so much in the IF world. Later on in the book, the issue of ethics and medical science comes up. The debate is whether or not Leslie's mentally disabled husband should undergo an experimental operation which might restore his capacity. Because he is an abusive character, several people think not - he would just end up making his wife's life a further hell. In the end he does undergo the operation, and Things Work Out through a plot twist; the moral being that one must always do the right thing even with the consequences are  not assured. The happy ending wraps up the book's complex themes a little too neatly. Anne's House of Dreams isn't great literature. And yet it has its moments of truth and at its best it's an honest telling of the dramas of women's lives.  I'm not especially mystical - at least not in the sense that I could say there is a mystical system at work in the world - but I do feel grateful  for whatever brought this book into my path, long ago.

So where does that leave the Pain Olympics? I think of Tolstoy's famous line - that every happy family is happy in the same way, but every unhappy family is unhappy in their own way. Or music theory. Major scales sound happy, but there are not many of them and really, they all sound the same. On the other hand, there are many, many kinds of  minor scales. Nobody wants to be unhappy, but even at our most joyous we listen to music in C minor, we read, we try to learn compassion. From where I stand now, I'm grateful there are people I can learn from. 

Monday 11 February 2013

The Questions We Ask


On Saturday Mr. Turtle and I decided to try Shaw Pay Per View for the first time to pick a Saturday night couch-cuddle movie. Neither of us seemed to know what we wanted (I usually just want a "feel good" movie) so we spent some time flipping through the titles. I was moderately intrigued by a Norwegian movie about troll hunters (still kinda curious about that). Mr. Turtle ended up picking Tim Burton's Frankenweenie.

Frankenweenie turned out to be the best animated movie I have seen in a long time, maybe of all time, and it was pretty darn good as movies go, too. I loved everything about it, but my favourite character was Mr. Rzykruski, the science teacher with the heavy accent and the colourful metaphors.

Mr. Rzykruski explains lightning to his class:



Mr. Rzykruski gets his class excited about science, leading to competition among the kids to win first prize in the science contest. Their experiments get a bit out of hand, and some parents call a meeting where Mr. Rzykruski is accused of causing trouble in the community. Various accusations are made, such as "My daughter is asking questions about things I have never heard of!"

 Mr. Rzykruski gets up to defend his teaching. He makes an awkward but hilarious speech to the parents beginning "Ladies...Gentlemen: I think the confusion here is that you are all very ignorant."




Maybe part of why I love this so much is because I grew up in a family of technologists and engineers, with books spilling off every shelf and lively discussions about everything under the sun. Both my parents also had English as a second language. A lot of profound concepts were explained in a similar manner to Mr. Rzykruski's in our household.

Of  course, Mr. Rzykruski is fired. Victor catches up with him as he is packing his bags into his car.
"People like what science gives them," he says, "but not the questions science asks."



The movie is set in the 1950s, but its themes are for today. After, this is the age of unprecedented information access, of iPads that toddlers can operate, of scientific and technological advancement affecting every part of our lives. It is also the age where many people seriously believed that the world would end on December 21st, 2012, and where the History Channel airs a show called Ancient Aliens that attempts to "prove" that aliens helped build the pyramids, Stonehenge, the Bow Tower, etc. (OK, I'm still waiting for the show about the last one. Give it a couple of years. It should be out in the same season showing how alien abductions helped develop the technology for IVF.)

Apart from being an awesome movie, Frankenweenie resonated with me also because the themes reflect some of my current questioning and thought process, as we contemplate using Assisted Reproductive Technologies (ART) to start our family. (I'll never see either science or "art" in quite the same way again...heh.)

I tried doing some internet research on what different religions say about ART (in trusty ol' Wikipedia Yah, I know, very scholarly of me). Mr. Turtle and I don't belong to any religion, and have no plans to do so in the future. Religions views therefore don't have any personal significance, other than maybe giving us some idea what to expect if we discuss our plans with friends/acquaintances who follow a particular faith. But I was curious to see if I'd find anything that resonated with me or even that I vehemently disagreed with.

I didn't find anything particularly original in the religious perspective.  Judaism and Islam support many forms of ART. Reading a between the lines, the most likely reason seems to be that it means more babies born within the religion, and that's seen as a good thing (Islam seems more preoccupied with (il)legitimacy - so has more prohibitions around donor eggs/sperm, artificial insemination and surrogacy.)  "Liberal" Christian religions mostly support ART. The Catholic church (and Evangelicals, according to Wikipedia, anyway) are  opposed to pretty much everything, including IVF with sperm/egg of husband and wife. 

From my reading, the objections sum up as follows:


1) ART gives people too much control over reproduction and the creation/lifespan of embryos. It's OK for parents (to a point) to have control over reproduction. It's not OK for people outside the marriage (e.g. doctors and scientists) to have control.

2) There's a lot of anxiety over science and technology "dominating" human destiny, whatever that's supposed to mean.
3)  Conception often happens naturally, therefore it should always happen naturally, or else it's wrong. 

Now I approve of science and technology and medical interventions. They have caused some problems for sure, but not so many problems that I'd want to go back and time and live without them.  In fact, that would be the single most important reason I wouldn't go  back in time. That and the fact that women's lives and choices don't look so hot even if you go back even a little bit back in time.

Anyway, here's my take on 1, 2, and 3:

1) Control:

I think it's normal for humans to seek control over their destinies and environments. And over each other,  for that matter, but that's why we set limitations through laws and morals.  I see ART as an attempt to gain control over infertility, not over other human beings.  For sure the system has potential for abuse. You could get unethical scientists/doctors manipulating couples for purposes other than creating a child. Or you could have people trying to create a "designer baby." I must say making a designer baby is the very last thing I care about.  I would hazard that a designer baby is the very last thing most(all?) IF couple care about. Also, IVF is grueling, expensive and unpleasant enough that you'd have to be pretty crazy and/or masochistic to voluntarily undergo it for some Orwellian purpose.  Although probably there is someone out there who would do that, such is the variety of humans on the earth.

I would agree that we should pause before exerting control over any human being, maybe even an embryo.  But I don't think that ART / IVF is really breaking new ground here.  People have always faced these kind of questions.

2) Science and technology:
....ARE a part of our world and for what it's worth, our destiny.  Now perhaps, one of the risks of utilizing ART is that people can put too much faith in it.  They can do IVF cycle after IVF cycle in their desperation to have a baby. Maybe that's kind of like letting technology rule your destiny.  But that's a choice, not an inevitability.  One can, as a sentient adult, put limits on how much and for what exactly one is going to utilize technology.  That's much the same as the moral limits we put on ourselves daily to avoid being dominated by any desire.  Again, ART is not really breaking new ground here.
Or, perhaps it's the embryos specifically that technology is supposed to be dominating. OK, the embryos can't do anything to protect themselves.  But from what I understand about IVF, it's an imperfect attempt to duplicate what happens inside the womb.  Some embryos don't develop in vitro, some do (at least for a little while.) Much the same thing happens inside the womb, though on  a  different timeline.  It's not a perfect process either (large percentages of embryos fail to implant or they miscarry.) The scientific attempts to control the in vitro process are to try to make it more efficient and increase the success of an implantation.  I can't see that as inherently immoral.  Maybe it can be wasteful, but so is nature (millions of eggs and sperm, and how many ever become a baby?)
3) "Natural is better:" Again, I just can't accept this without some sort of objective proof that natural conception is better than assisted, other than assisted conception involves scientists and is therefore icky.  Granted, science and technology have given human beings more knowledge and control over their environment and destinies than ever before. I guess some people are OK with that, and some are not. I'm mostly OK with it because I don't see infertility as my noble, natural destiny.  I'm OK with trying to outsmart it. 
Finally, I also think that ART is if anything, more loving than natural conception, specifically because it involves more sacrifice - of money, dignity, and - yes - people's (mostly imaginary) control  over their reproductive system. As people have said, no child conceived by ART will ever doubt that they were wanted. The process might not be very romantic, but there is a huge amount of love present in an assisted conception (along with a lot of other emotions.)   That's why I don't feel any real hesitation in going down the ART path, scary as it is with no guarantees. 

As I think about all these things, I realize why i liked Frankenweenie so much: despite the fact that the children's experiments led  to monsters, and Mr. Rzykruski tells Victor to "be careful," the movie takes a very positive view of how science and technology affect our lives. 

This came out most powerfully at the end (spoiler alert).

I admit, I totally expected Sparky to die for good at the end of the movie. The English major in me was convinced that only a death, only a lesson in "letting go," would give the movie real emotional and tragic significance.  I was all ready to give up on a happy ending (see, I was so  caught up in the story I forgot it was a DISNEY STORY, for pete's sake.)

I was a bit surprised when Victor's parents tell him they were wrong, after all, to advise him to "let go" of Sparky.  Not only that, they get the community together and try to shock Sparky back to life by attaching him to jumper cables. Incidentally, the process is totally undignified. One feels almost sorry for Sparky's poor, battered body. But hey, I guess parents will try anything for their son. Of course it isn't really going to work. The parents rev the cars; Sparky lies limp. Okay, there's the tragedy. Try everything you can, but you can't cheat death.  Right. That wraps up the story.

But then Sparky does come back to life.  And I was surprised.  Part of me actually felt resentful, cheated out of the Profound Ending About Letting Go, about the supremacy of death. Then I thought about it, and I realized that this time, the happy ending was actually the more daring, the more thought provoking one.  It said that we should dare to mess with the stuff of life.  Maybe it won't work or maybe the result won't be exactly what we had in mind.  But that doesn't make it wrong to try. And if the results are imperfect, messy, and complicated (like a human being) we can accept and live with that. Because that is what loving people do. 

I can get behind that. Yes.


Saturday 9 February 2013

Phew.

So, AF finally showed up this morning. I am relieved.

Now I know my cycles can go to 39 days. Oh, yippee. That's added a day onto my average length.

I've decided that I will chart cycles, just so I am able to make some predictions about my cycle length.

On the bright side, I'm pretty sure I did indeed ovulate due to the high readings I got toward the end of the cycle, so I guess it's good to know that even when they go long, the stuff that is supposed to happen does. I'm keeping my fingers crossed that my reproductive system is mostly issue-free.

Not much to add. Maybe open a bottle of wine this evening.

The Turtle.

Thursday 7 February 2013

Kind of hating on my wonky cycle

So, day 38.
This is officially the longest cycle since I started counting. (Next longest was 33.)

It's making me a bit batty, and I'm carrying around some inner tension that is tiring me out.

On one hand - prego test on day 32 was Negative. So that means Not Pregnant. Right? Right?

But where is AF? How late is it possible for me to ovulate? How long can this luteal phase really be? (Like I can answer that.)

I started taking Ovacue vaginal readings again just to see if I could figure out what my hormones are doing. For the past week, my readings have been  over 300 except for one day. At least I've stopped wearing pads everywhere, because based on former cycles, AF would only come once readings dropped below 250.

Every time I drink a coffee or a coke, I feel uneasy because what if I'm somehow pregnant anyway and doing some kind of harm? On the other hand I won't NOT drink the coffee because dammitt, it's not that much coffee and the test was negative and I'm not supposed to be able to get pregnant and I don't need to go around fantasizing (much).

I've decided that if I  hit Day 40 and no AF, I'll test again.

Sheesh.

The Turtle

Friday 1 February 2013

Wonky cycles: To care or not to care

I've charted most of my cycles since last January, using mainly the Ovacue. My cycles average about 25 days with significant variation (longest: 33 days. shortest: 17 days!). Generally though they are not much longer than 25 days. (I charted BBT for a few  months, but by summer I was tired of the ritual. Plus I would always wonder after a disturbed nights sleep if my temp was valid - and of course, I would not sleep well mostly on the nights when I really needed to track my temperature!)

My current cycle started bang on New Year's day. I made a half-hearted attempt to chart the first couple of weeks - and then we got the news of Mr. Turtle's diagnosis. That seemed like a good excuse to take a break from charting.  Of course now I am having a very long cycle and have no idea what's going on. I finally took a pregnancy test today. I don't test very often; I don't like to feed the crazy and anyway AF pretty much comes on cue.   I grabbed a pee stick at the drugstore on the way home from work and anointed it as soon as I  got in the door. BFN.  I'm not surprised: pregnancy was a long shot.

But without any indicators of when I might have ovulated, I don't know how long the cycle will last.  I started wondering what might be going on this week, when AF was a no-show. I took an Ovacue vaginal reading around cycle day 28.  It was the first one I'd taken in weeks, and the result is not very meaningful, since there is nothing to compare it to except my trends from previous recorded cycles.  I had a vaginal reading of 95, which is low for the luteal phase.

(To learn about how the Ovacue readings work, see this link. Basically, the higher the vaginal reading, the higher the progesterone level. Ovulation is indicated by a patter of low vaginal readings followed by a high readings, indicating the body's switch to progesterone dominance.)

Today after the BFN, I took another vaginal reading: 359. I was rather surprised.  My longest cycle last year was 33 days, with ovulation possibly happening around CD 20. (This is unusual for me; I usually ovulate between CD 10 and 14. But it made sense in terms of the cycle length) If I am near the end of  this cycle, I should be seeing vaginal readings drop. Instead I got a very high reading.

Anyway, now I'm feeling ambiguous about my decision not to chart. Even when I chart I can't always tell  what's going on with my cycle, but often I can see patterns that make sense.  Now I'm just waiting with lots of drippy CM, sore boobs, occasional mild abdominal sensations, and little idea what to expect (and I am getting sick of wearing maxi pads everywhere because AF could start anytime.)

I had some slippery CM between day 25 and 28 (again, I didn't note exactly when), so I wonder if I ovulated very late, around day 25. That means AF might hold off till day 37 to 39 (ugh!)

A couple of days ago, I also had some weird muscle spasms off and on for about 24 hours. They were around belly button height and perhaps they were contractions, though I don't know what contractions feel like. They didn't hurt, but they did feel odd.

So, no answers, just some random data that I decided not to pay attention to, and therefore have no way of interpreting. A little frustrating.  On the other hand it was nice to not care about my cycle this month, and by and large I've done a good job of not caring. Since Mr. Turtle is the only one with a medical diagnosis, and his diagnosis means that it is very unlikely we will conceive naturally, whatever I do, I should be free to forget about all of this. Apparently I'm not that keen to take advantage of  that freedom.

It's just not possible to be completely indifferent.


Later, The Turtle