Thursday, January 10, 2008

When the Journey Takes Over Your Life

There is a Buddhist saying that goes something like this:

Focus on the journey, not the destination. Joy is not found in finishing an activity, but in doing it.

And although I sometimes admire people who buy into theories wholesale, exceptions must be made. If you worship at the altar of Adam Smith, I urge you to reconsider energy and health care, because I'm not convinced (Enron?) you can cram them into the capitalist model. And if you try and embrace Buddhist philosophy AND you're infertile, well, here's a quote that you're better off shredding into a million pieces, stomping on it for a while, running it over with your car, and then setting it afire.

Yesterday at my therapy session I mentioned I was a bit stuck on something. I feel stalled reproductively, and that I can't make any decisions until I have more information. And sadly, this includes the big decision about whether I want to do this again or not, regardless. There are a lot of "it depends" out there that need a bit more feedback from the great geneticists on high before I decide to trot my (soon-to-be-) 39-year-old body to an RE and ask what gives in the egg basket, and what s/he can possibly do for me. Like any good infertile, I need to expect those freaky outliers which in my case are things like: say I get pregnant using egg/sperm donation, and then find out 7 months into the pregnancy that they've cracked the code and found the mystery gene that killed Maddy. Clearly I carry out the pregnancy (or, you know, try) but how would I deal with this? Regret? Pack it and move on? Try (gulp) yet another pregnancy while now geriatric? What would said kid think to be bookended by 100% genetic siblings? Gah.

ANYWAY, I said something to the effect that it's hard for me to mentally move on in other areas -- like where Maddy fits into this puzzle of my life, and how to plan a foreseeable future for myself -- until I solve this reproductive piece. It's holding me up, and gumming the works. Which in my head, while sad, made perfect sense and didn't really seem out of the ordinary. And my therapist greeted this statement with Alarm. And I became alarmed at her alarm. And spent yesterday wondering why on earth this was just such a familiar place for me to be -- stuck like this, with everything on hold. So I ruminated, and it came to me.

Early in 2002, six years ago right about now, while I was in the waning months of 33, I began my journey to have a family. And a week or so after my 34th birthday, I miscarried at eight weeks. To say I was clueless about the whole thing does disservice to the word clueless, but as my miscarriage dragged on into a 3.5 month debacle ending in a D&C in July, I quickly ramped up, this time with my good friends BBT, ovulation sticks, google and friends in the computer. And tried again. And again. And life turned into the two year treadmill of trying and failing, the groundhog day when your period starts. As any infertile knows, infertility quickly bleeds (pun totally intended) into every other area of your life. That it permeates your marriage and sex life is a given. But as your life slowly becomes consumed, and broken down into increments of days and sometimes hours, infertility begins to invade just about everything. It is entirely impossible to compartmentalize infertility and check it at the door. Can I go on that vacation or would that be just about the time I would be miscarrying should I get pregnant this month? Shit, that business trip falls on cd 12-14, better see if I can rearrange that. Would love to go out for a margarita with you, but I'm 6 dpo, so it's water for me. (Again.) Try me again in 8 days, and I'll spring for them and chasers.

When I finally went to an RE, I prayed he would find a problem just so we could do something. He did, a minor one, but a potentially solvable one, and I became pregnant with Bella. What I really liked, though, was that from square one in his office we had a plan: This month we treat you like a lab rat. For the next three months we'll try this, and if this fails, we'll try that the following two. And then we'll bring out the big guns, and don't worry, here they are, and I know how to wield them. Finally, there was an outline to the repetitive, head-banging struggle.

And hope? Forget it. If you've suffered through infertility and miscarriage(s), you know better. Where others can view two lines as the end game, you're left merely hoping it will stay blue for another two weeks. And then another four. And that there'll be a heartbeat. And up and down through the seemingly infinite markers along the 40w trip, hopefully past the date of your last downfall, hopefully past the nervous phone call from the perinatal center. Infertility tests your hope to the extreme, and to say that I've been burned after making it through every milestone including delivery is an understatement. And hope is one of those things that's nice to have elsewhere in your life, y'know?

So after Bella was born, we knew we wanted a second, and now I was solidly in the "advanced maternal age" category, so there wasn't much time to waste. I finished breast feeding at a year, gave myself about 6-8 months to lose a bit of weight, enjoy some wine, catch up on sleep, and then back I went. Back into the cycle of planning and plotting and having everything rotate around your reproductive schedule, this time with the bonus of secondary infertility: finding childcare so you can pop in willy-nilly on days 3 and 8 for blood work, 11 for an ultrasound, and so on. Schedules shuffled, diets changed. When I began bleeding during the US-Italy world cup game (week 6 of Maddy's pregnancy), I sighed, and realized I now had to plan a D&C around work, child care, selling our house, and world cup. I walked into the RE with the world cup schedule in hand on Monday morning, determined not to miss a match laid up in the hospital or zipped out on drugs, and there was Maddy, heart beating away, with her new friend, a big cyst of blood.

What does this have to do with now? I feel, to put it bluntly, that I've just experienced a failed pregnancy. And I'm still on the journey to have a family, but but now I'm in the desert doing donuts, and there isn't a road sign to be found. To belabor the metaphor, my car is really beat-up and dinged, and there's no radio to occupy my brain. Hope left the building years ago. There's no kind doctor pointing the way, showing me the promised land and the big drawer of artillery. No one averring or even gently suggesting that I should definitely avoid one turn-off over another. It's very hard for me to plan in a future -- a future now weighed down with grief for a missing child whose space in my life I need to consider -- whether I need to leave some leeway in there to think about this all-consuming exercise and the panorama of potential results one more time. I'm not sure whether it's time to turn off the engine and leave the car be, or, stay on making donuts in the dust, hope someone can begin again to prescribe tests and blood draws and the ever-lovely vaginal ultrasounds and fertility drugs so that my life, already consumed in toto by this journey, becomes full with the minutia of having a baby once again.

Maybe it's totally possible for some to just be on the grief journey, and not let that particular depression and anger overstep it's bounds into other arenas. But when the grief is part of a longer, much longer, more tedious and stressful journey that has already taken over all areas of life like kudzu? I believe it's a bit more complicated. I've already done the delicate tap dance with family. I've already had my hopes dashed, although not to this extent. I've been on a six-year trajectory of loathing people who can easily become pregnant and carry on as though it's the greatest miracle in the universe. Believe me, I've asked myself, do I think my grief is like infertility, or a part of it? And I think I've concluded that my life was already all-consumed before Maddy's arrival/demise, and that this is just a big, sad, chapter of that entertwining journey.

And thus, I feel a strange sense of deja vu, like I'm back where I started. Infertile. No answers. Ground-hog day, over and over. Hope beaten into the ground. Except this time without the distraction of the daily countdowns. And I need a phone call, or failing that, a divine sign, that I need to let the journey enter it's 7th year, or hang up my shoes not having reached the destination I set out for, accepting the place that I've reached with Bella, and begin another completely different journey anew. I'm now at 11 months past Maddy's death, and it's caught my attention that many other people who circulate through here by this this point have some sort of plan, direction, and journey. I guess I just wish mine felt a bit less futile and contained a few more signposts, and was a bit less entrenched into other parts of my would-be life. There is no joy left in this trip. And it may well be time to book another.

Note: It has, with a great amount of embarassment, come to my attention that I cannot do math. I used to be able to, I'm not sure what happened. In the beginning of 2002, I was in fact 32. I turned 33 in 2002. Thank you, that is all.


niobe said...

Or, as another old saying goes:

A journey of a thousand miles sometimes ends very, very badly

What's the information that you're waiting for? I mean, if you feel like telling us.

Which Box said...

Oh wow, this post hit me hard.

For me, my grief and rage is wrapped entirely up in fertility on top of every other piece of crappiness that exists in my life. It's part and parcel of the whole thing. And it makes me stuck, too. I hope you figure out a plan and a way forward.

Megan said...

It sucks. You don't have the information you need to make a decision. You might be good to go with your own gametes. Or maybe not.
Maybe what's important is you really need to get in the car and drive somewhere right now.
I think your much-wanted third child could cope with not being biologically related to you.
Feel free to tell me to fuck off. I wish we could talk over a 5 Guys cheeseburger, Tash.

Waiting Amy said...

I have not had the type of loss you have, but I relate to all the emotions you describe. I empathize. The journey sucks.

I too think a much-desired third child would be fine with a limited biologic tie. (Isn't it possible to consider only single gamete donation?) Have you discussed any of the circumstances with the RE lately?

Making a plan can only happen when you are ready. It sounds like you might be getting there. Hoping you feel less stuck soon.

girlh said...

Well said. I'm right there with you.
Stuck in the muck of "what if" dammit.
I wish I had andswers.
For you, for me, for anyone needing them.
Just skip right to the last chapter and find out what happens. And be done with all this ttc.

Tash said...

Niobe: Sorry, was in no way meaning to be cryptic, just thought everyone had memorized everything I've ever written. Not. Even I had to go look up the numbers and dates: we are waiting for tests on 5 genes that are known to cause auto-recessive mitochondrial diseases. They went out end of Nov/early Dec, and will take "two months" (I'm building in a healthy buffer on the end of that.) Should these fail, there are two experimental studies on two other genes that we'll get entered into, but they sorta shrugged their shoulders as to when we'd hear about that. And of course, everything could turn up goose eggs and we're back *assuming* this is an autosomal recessive disorder of unknown origin.

Oh, and sorry again, but by egg SLASH sperm (egg/sperm) I meant one or the other, not both. My apologies. My genetics are not quite that bad.

Elizabeth said...

It makes total sense to me, feeling stuck and stalled. Uncertainty and limbo are fucking hard, and you've been dealing with them for AGES now. And now you're stuck with a particularly freaky, tiny-percentages medical situation where nobody has any good answers for you yet. It's sad and shitty and frustrating and incredibly draining, and frankly your response seems entirely rational to me, hardly cause for Therapeutic Alarm. Well, what the hell do I know. I don't have anything useful to say, but you have my sincerest, deepest sympathy and solidarity.

peter said...
This comment has been removed by a blog administrator.
samill said...

Great post. Signposts are too bl**dy few and far between if you ask me.

Lisa b said...

tash I always hesitate to comment and be a total ass but having gone through these types of unknowns with Julia I can imagine how hard it is for you to decide about another pregnancy. I don't mean at all to say that I understand, I know I have no idea.

I spoke to a mom this morning who went on to have two healthy kids after her first had complex, unexplained fatal conditions. I could tell you more about her and my experience with genetics if you are interested but it always seemed to me that more information was helpful in a way but ultimately did not answer my question of what would I or should I do.

Lisa b said...

oh and that buddhist saying is bunk when it comes to pregnancy.

Julia said...

This is a shitty journey, no two ways about it. And yet, you don't sound done with it to me. I guess I wish you a definitive answer from the genetics people, and soon.

Oh, and dude, you are my kind of chick with the soccer addiction. We should talk about that sometime. ;)

Searching said...

I don't think you MUST have a plan by 11 months. Other people aren't dealing with the same issues you are. And those blasted tests take soooo long that you can't even be expected to have a preliminary plan in place because you don't have enough info. So it's okay to be where you are. Completely sucks and I'm sorry for that, but don't beat yourself up for it. I hope you don't have to book another trip, but if you do I'll come along for the ride.

meg said...

I don't really believe in signposts on this hellish journey. Honestly, if they existed, I would have jumped ship long ago.

Infertility, is just the most horrible thing that can ever happen to you (save for your baby dying). When you get the "pleasure" of both, it's just beyond hell.

I don't know what the answer is in all this. But I certainly understand how it feels to be living the groundhog day of despair. I'm living my own one here. Basically, I am no help. I so wish I knew what to tell you.

charmedgirl said...

i think after infertility AND loss, and the confusion that follows, i've come to the only rational conclusion: my reproductive self is destroyed. as a woman, that part of me will never, EVER be ok.

yes, i've done something extraordinary; i've had triplets and they are somehow all here and all ok. but their existence labels me a reproductive freak forever. i know, who gives a shit? i have live kids. but for me, it is also part of my reproductive destruction.

during my infertility years, i used to be truly grateful and thankful that i was just not getting pregnant, and didn't also experience miscarriages. i always assumed (HA!!!) that once i got pregnant, everything would be fine. we were also told it COULD happen, but who knows when and if? so at the very least, my reproductive self was just sub-par. not really THAT fucked up.

at this point, who i was is dead. i contemplate a decision that can't be made (should i try to have another baby?). i leave it to chance at this point, but i think i would rather bury this sometime soon...see but it took four months for my first period. who knows when i'll get another.

buried alive. that's what it feels like, loss and infertility. buried alive.

Coggy said...

I don't think that saying applies to pregnancy either I mean I really don't want to just have to enjoy being pregnant over and over with no baby at the end of it.
We'll see what the future holds I guess.
This post has haunted me recently, I am so firmly fixed on my journey I can't help wondering how much of my life it is going to take over. I am angry at having been denied a normal pregnancy and birth. I am angry that I am now on this journey and I'm scared shitless as to where it's going to end.
And if another well meaning 'normal' person tells me they're sure it'll all be fine I may just punch them.

Searching said...

Erk. I was going to leave a comment since I thought I had accidentally ignored you and then saw that I DID leave a comment earlier. Don't worry, you aren't the only fog-brain out there. :) We could all have meetings but we'd all forget about them! Hope today is manageable.