Secret Hope Stories are what perpetuate the what ifs in our head. You know what I'm talking about--they're the stories of the ninth IVF that was finally successful and resulted in healthy twins. Or the blood work that finally revealed the problem and allowed the habitual aborter to carry to term. They're the debris that you grab for when you're drowning in the ocean. And they may help you float. Or they may drag you under. And you just don't know.
Hence the what if.
I am the product of a Secret Hope Story--the woman told to go onto Plan B because she wasn't going to get pregnant/carry to term. And then the miraculous conception and pregnancy resulting in a baby that a doctor told you that you would never have. Thank you, Mommy, for still trying even though you had already built your family.
I recently met up again with a friend from high school (hi!) and she had one of those Secret Hope Stories. Four failed IVFs and a doctor telling her to move onto donor eggs. And a "what if" nagging in the back of her head took her up to CRMI (don't these stories always end up taking the person to CRMI? I've begun thinking of it as a pilgrimage site) which resulted in the IVF cycle that worked and two chubbulicious twins (I just saw them and I swear, you could just eat the cheeks off the boy--that delicious).
You hear these stories and you can't help but ask 1000 questions, all the time comparing it to your own life and wondering if they found the key that could unlock your fertility as well. I've been trying to figure out why these stories give me hope and make me want to try "one more time" vs. the stories that well-intentioned relatives pass along when you tell them about your infertility. You know--the exact same ones I'm talking about now. But when they talk about their neighbour's cousin who became a mother after five miscarriages, I want to scream, "I am not your neighbour's cousin!" But when a fellow Stirrup Queen says, "I don't know why it worked that time, but it did" I want to start rolling the dice rather than following a doctor’s rational thought.
Because fertility treatments at some point--especially if you have unexplained infertility--begin to feel like gambling. As a rule, I don't gamble because I could totally see myself becoming addicted to it. Just one more time. Just one more time. This will be the time. And it truly is gambling with stakes much larger than the quarters I would use if I ever went to a casino. You're gambling with hundreds or thousands each cycle as well as your general physical health and mental well-being. So...I won't try Vegas, but I will try the fertility clinic? It doesn’t make complete sense.
And this gambling analogy has become even more constricting with secondary infertility. Do we take the gamble knowing that the money we use is being taken away from our current children? I think the money is well spent if it results in a child, but what if it doesn't? Part of me says, "play it safe--go with adoption. It's a real child in the end." But the other part of me starts thinking, "but if I got pregnant the first try with IVF, I would be spending half the amount that I would on adoption. So then IVF is the best financial option!" And you can see how you get back into that “what if” mentality.
My doctor shook his head and told me I should play the lottery with the odds I encountered during my journey. Odds of having FSH as high as mine at my age--slim. Odds of developing hyperemesis gravidarum during pregnancy--.5% of pregnant women. Odds of having perfect prolactin levels prior to pregnancy and no prolactin produced after pregnancy--under 3%. So if I hit that trifecta, who’s to say that I won't have that next Secret Hope Story in my back pocket?
Nina at Stella and/or Ben is going through this “what if” right now. She's not ready to move onto Plan B regardless of what the doctors are telling her. She's trying Plan A again while tweaking some lifestyle changes--no coffee, no alcohol, no fast food. And she asks at the end of her post, "Do you think we are just fooling ourselves? Do you think we are nuts?"
No, I don't think you're nuts Nina. And to be frank, if my heart was still on Plan A, I would continue with Plan A until someone pried Plan A out of my sweaty little hands. Because you know the same hope stories that I know. And in the back of your head, they start nagging you. It's not that Plan B isn't a beautiful and bright path. Finding it emotionally difficult to give up one path does not mean that you think the other path is a lesser path. It's apples and oranges. And if you were in the mood for an apple and your heart was set on an apple, it's difficult to start eating the orange, even if the orange is a perfectly delicious fruit that you usually enjoy.
It's hard to give up the desire for that apple when you know stories of people who went to a different food store or knew a different way to ask and received that apple. If it was a moot point--if the manager made an announcement to the store, "no apples today. Terrible frost up north. Killed off the apple supply. No more apples. Ever.” Well, you would probably grab your bag and head over to Plan B and a huge pile of oranges in a heartbeat.
But it’s that “what if.” And it makes you gamble because you know too many stories of women who are happy that they didn’t take the advice offered and kept pushing through until miraculously Plan A came true. Or didn’t take the advice offered, stopped pushing through, but miraculously, Plan A came true anyway. And I don’t know if overall these stories help or hinder. My heart tells me that they help. But I’m a gambler at heart. So should I listen to myself?
Hang in there, Nina. I hope you find some peace and that this cycle is that one in twenty.
What are your thoughts on my bold questions/thoughts?
Thursday, September 07, 2006
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16 comments:
Kenny Rogers' THE GAMBLER is now playing in my head.
You got to know when to hold 'em,
know when to fold 'em,
Know when to walk away
and know when to run.
You never count your money
when you're sittin at the table.
There'll be time enough for countin'
when the dealin's done.
Like gambling (about which I know very little) our moves, decisions, timing, and quitting are very personal. Even when one plays multiple times, every game (treatment) is different.
Every card dealt changes the situation ever so slightly. Counting the cost is done at every move.
Fortunately, however, the House doesn't always win...and that's when we rejoice.
Because if it happened for Joe at the end of the table, it could happen for me.
I think the difference lies in the fact that Secret Hope stories are passed on by those who've actually been there. They're speaking with the authority of someone who's gotten the IF diagnosis, been through the painful treatments, and had to fight against those same "sister's cousin's neighbor's" stories that we've all heard. If they think I can benefit from hearing their one-in-a-million conception story, I'm going to sit up and pay attention.
Do the stories help? I think they do. It's so easy to lose hope during this process, and if nothing else, these stories provide hope that it can happen for me too. I may feel differently if we reach a point where objectively stopping makes more sense than continuing, but right now I'm going to keep seeking out those stories.
I totally agree with c. It's about where the stories are coming from. The stories from our fellow IF-ers come from a place of hope and wonder, a thorough appreciation of the blessing that was received, and a hard-won understanding of the road traveled to get there.
The "my aunt's-hairdresser's-dog groomer's-housekeeper got pregnant against all odds after 27 years" more often feel like they're coming from a place of "just relax," "it'll happen when the time is right," and "I don't really want to hear about what you're going through and what you're feeling; I just want to say something to make you shut up about the whole baby thing."
Dang. I'm in a bitter mood today.
ALL the stories just make me sad and angry and ultimately make me feel like a failure because it all comes down to them being able to do something that I can't and even though I know it's not always logical, I blame myself. I come out on the wrong side of the odds again and again and I really don't expect to ever have a "miracle" of my own. I can be happy for infertile women who do beat the odds, but it doesn't stop me from feeling devastated for me.
Whew! I must be in the bitterest of bitter moods today.
I think the stories from infertiles that beat the odds are so much easier to digest because it is coming straight from the source. They know it and live it so it becomes real.
When I was in high school my AP History and English classes were combined and team taught. Our teachers believed in giving us the most realistic experience that they could. So when we got to more recent history like the Great Depression, WWII, Civil Rights Movement, Watergate etc. instead of just going through the text they would bring in people that had first hand experience with these events. It was much more profound to have someone come in and relive those moments then if our 30something teachers just stood up there and lectured to us. Our teachers felt we had a right to hear about it as it really happened. Would it have effected us as deeply had the teachers taught it to us? Probably not.
I actually have two friends and an Aunt that beat the odds with IF. They are my inspiration in all of this. Their stories for now are what keep me going. Even though it hasn't happened for us yet, we have living proof that it can.
As my infertility extended longer and longer, I lost patience with more and more secret hope stories. The only ones I wanted to hear were the ones that were most directly analogous to my situation. So if someone told me that their friend had endo (like me), had more than one failed IVF (like me), had endometriomas galore (like me), and finally succeeded, I would only find solace in that story if the woman also happened to be my age or older. Otherwise, it is just too easy to think, well, it worked for her because she's only 27, and I'm 34! Who knows, maybe over time I might decide that she has to be of above-average height, have brown hair, and be a Gemini as well.
I also tend to prefer stories where the person changed something before it worked - e.g., they went to CCRM or did a lupron depot protocol. If it seems like there's a REASON (vs luck), then maybe that reason could work for me, too.
I hear you.
And I also agree with C.
In fact, just last week my dad told me that he was talking to his cousin in England, and "so and so cousin of another so and so relative did in vitro and she got pregnant!". I was like, Yeah dad.....I know that it works, sometimes. Those types of tales NEVER are helpful to me. I don't know this far-removed relative, and I certainly don't know her medical history which lead to IVF in the first place.
Logically, I already KNOW that IVF works. IVF/FET works EVERY SINGLE DAY. Sometimes even on the first/second try! But not for everyone, and so far, not for me (or at least not long enough for me to actually get a baby out of it).
Stories from those in the "trenches" ARE different, but even now, after one fresh cycle, a miscarriage, a failed FET, and second FET that led to a blighted ovum miscarriage....Hearing about IVF working for fellow IF'ers doesn't make me feel at all assured that it will ever also work for ME.
And I can't even find any comparable success stories of fellow IF'ers to apply to my situation, because I don't even KNOW anyone else who has had Ovarian cnacer at age 18! And even if I did find someone...chances are they probably got knocked up just fine as it just happens to be so damned unusual for someone to even have fertility problems after the inocuous chemo treatment I received. (which doesn't actually impact fertility at all)
So, I have no idea where that leaves me....not with a lot of hope, though, that this will ever work for me.
Nilla
When I was still single at the age of 36 and couldn't remember when I'd last had a date, never mind a meaningful relationship, I found myself asking married women "How did you meet your husband?". As in, "What did you do that I haven't tried?"
That's how I think of the secret hope stories. Sort of like if you listen to enough of them, you will FINALLY hear about the magic bullet that is going to work for you. Sadly, what may be a magic bullet for one person isn't going to work for another and that's what is the most frustrating part of IF. One size does not fit all.
But the secret hope stories do show that there are magic bullets out there and maybe that's where the hope comes from. So why not listen to them if it gives you some measure of comfort?
I struggle with this all the time. Common sense thought fights the gambler in me. My husband has so said "no more gambling" and sometimes that is the hardest "what if" of all, because I will never be given a chance to know that I tried everything.
I think the stories that you hear from other infertiles are more helpful because they can give you all the info you need in order to determine whether your situation is analogous. And then to dismiss the story when it turns out that that person actually had a condition completely unrelated to yours.
But I'm with Lisa -- secret hope stories usually make me feel like a failure. Like if I just hung in there a little longer, it would work out for me. Like we gave up too soon. That everyone gets a happy ending except me. So I try to stay away from those stories for the most part.
I think it's like... when my mum tells me about her friend who was never supposed to be able to have children and now has three daughters, I cry out in frustration because:
a) it's like she's telling me to quit whining, whereas I think the whining is still perfectly valid.
I don't like being told, effectively, that I shouldn't be upset about our latest chemical pregnancy because her friend had several whole miscarriages but ended up with three daughters.
This sounds melodramatic even to me, but try, "It's disappointing your father died but I knew a cousin of a friend of a friend and her father died but then her mother remarried at 98 years old and she absolutely adores her new stepdad! So get over it!"
b) and also because she often tells me irrelevant stories. The friend of my mother had endometriosis. Is our problem endometriosis? Why would she think that story applied to me? It's never going to happen for us after we've given up, like it did for her friend.
But when a fellow infertile tells a Secret Hope Story, the intention seems different. It's like they're saying, "It's ok to follow your dreams against the odds - because sometimes it works out. Although I realise too well it doesn't always."
Plus a fellow infertile understands we are not all just "IVF patients" but individual couples with unique sets of problems and circumstances, and therefore knows which Secret Hope Stories apply to us, and which ones don't.
Or at least that's my take.
Bea
I like Katie's comment...can I say ditto?
I'm sitting here at work just crying my eyes out, because this is where I am , wondering how to take the next few steps. I am not sure, I am not quite ready to start poking myself with needles, I am scared of the cost , I am hopeful one minute and when I realize I only have 3 quarters left I am hopeless again.
yet in this week of my latest BFN, I found 3 women (or they found me quite randomly ) with Hope stories, each woman different and unknown to me in the world of IF before this week, but somehow they found me and gave me their story and their hope and I feel better. Cause they've been there, and they are not there anymore . I want to join them and their stories make me believe that that is still possible.
I'm with Motel Manager. I SO appreciate the solidarity & comraderie of fellow IF-ers, but after 9 years of IF I don't necessarily find it inspirational or hope-inducing (for me specifically). Our IF is so different, so complex, so unique, that there are plenty of times I feel like a freak even among the IF veterans.
I don't mean to sound all "poor me", but I have yet to find anyone who's been at this as long as we have and is still not done (Julia @ HBH comes close with 8 years). I wrote a post on this a few months ago- even my "worst case scenario" (the person who'd had the worst IF hell I'd ever heard of) recently had her 2nd kid- and here I am still spinning my wheels. Thank God for the company, but even so, its still a damn lonely road sometimes.
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