Saturday, February 26, 2011
That's fucked up.
This is why I haven't posted about all this stuff.
Hope vs. Resignation
After many long hours and conversations with C, it has come to my understanding that it's possible that what my therapist has been trying to do is get me to accept that we may never have a family. For the record? I have always acknowledged this, but because I do want a family I want to try to focus on doing everything I can before I give up and the hope for a family and resign myself to a different kind of life. I'm not saying "resign" as necessarily a bad thing, but what has to happen when all our options and attempts and chances have run out.
What I don't understand is why it's so important for me actively embrace this idea that we will not have children when there *are* at least a couple of options down the road for us. Clearly, right now, we are not in a place to pursue them, but why is it so important to accept and resign before the fight is over? Or, at least, over in my eyes.
C has, on occasion, asked me where that line will be, when I will know that I am done and we are done and have run out of chances. Will it keep moving? I don't know the answer. What I was hoping to get out of therapy was some exploration of what we've done so far, what I might be up for and not up for. How do integrate these THREE different options into our life, rather than be strapped down and made to accept that we will never have a family ever.
Unless that's what she and Dr. Shrink believe and want me to get. That IT WILL NEVER HAPPEN FOR US. That I am too fucked up and we as a couple are not fit to be parents.
I talk to my sister, and she says you know, there are still options out there and if you want kids (and she knows how I want kids) there are avenues to pursue when you are ready. You don't have to accept being childless YET. At some point it may come to that, but doesn't necessarily need to be right now.
Or, as C has also asked, am I going to go around and talk to shrinks and REs and adoption agencies until I find one who will tell me, "Sure, I can help you"?
I don't think so.
When my mother was sick, we talked to tons of doctors. The ones at SK in NYC, cancer doctors all over the country. We all did research we all asked questions until it became clear that not only was her cancer terminal, it was terminal in the very near future.
Where I come from, you do everything you can if you really want it. I curse myself not infrequently because of the way that I handled my/our infertility, pregnancy and the process of loss because I often feel like we didn't do everything we could. I was prepared to risk infection and blood clots and god knows what else if it meant holding on for another month or more to try to save Jacob. It never occurred to me not to until conversations with C made it clear to me he feared for my life, and not without reason. And so the conversation changed.
I used this analogy of how I see this situation with my therapist and all these people who are trying to help me. Well, at least my therapist. I apologize if it hits a nerve or is offensive to you, but, for me, it seems to illustrate what's going on.
If, for example, some random woman, Jane, were to discover she had breast cancer, her first thought might be, "Oh, my god, I have cancer, I'm going to die." Not unreasonable.
After expert tests and examinations and meetings and second and third and fourth opinions, the doctors come to the consensus that the tumor is not small, but manageable in that a lumpectomy, (possibly mastectomy) and a round of chemo, and a round of radiation should eradicate the cancer and help her live a relatively healthy, long life, as the doctors tell her. All she can think is, "Oh, my god, I have cancer. I"m going to die."
She is paralyzed with fear, and despite the pleading of her family to get treatment she does not. Think of all the people who love you, your grandchildren -- don't you want to see them grow up? "It's hopeless. I have cancer. I'm going to die."
Her doctors talk to her and tell her that this cancer, while serious, is treatable, and with careful observation and management after treatment, she can likely live far past the clinical 5-year marker. Of course there are no guarantees, so Jane is still in despair. "I have cancer. I'm going to die."
Her pastor comes to her and tells her that she has options, that despite the cancer, God has provided a treatment that may very well give her her life back. "We cannot know what the future will bring," says her pastor, "but we can try to live our life to the fullest, to do everything we can to live and live well."
But she does nothing. Family and friends, clinicians, religious leaders all say, "we have no promises, but we have hope, we have knowledge that may help us save your life."
All Jane can think is, "I have cancer. The only thing we know for sure is that cancer can kill. All this talk about "maybe" and "likely" and "trying," it's all pointless because I have cancer. I'm going to die."
And she does nothing to treat the cancer. And, just as she predicted, she dies less than a year later, knowing she was right. She had cancer, and it would kill her.
Heavy-handed, I know. I'm sorry.
To me, it's like saying, "You're infertile. Sure, there are treatments, but they might not work and that might make you really upset, so you should just accept that you are going to live your life without children. You need to accept this without trying anything else."
To me, a good therapist will help me understand what's happened so far, accept it and forgive myself and the (mediocre) doctors who were involved. Help me integrate that past into my present and my future. He or she would help me explore what my options are now, what the possible outcomes are and how I need to consider handling those. Or if I could handle them. How I can strategize living the rest of my life, given the limited options that I have.
Rather than making me accept that this is my fate and I really need to give up now to save myself heartache later. It feels like all the professionals in my life are wanting me to be Jane and let go of any hope, despite the (albeit small) possibility that we could have a family.
Maybe it's the inverse of my story: Jane says, okay, this is small, this is manageable. I've talked to doctors, I've talked to survivors, I've talked to folks for whom treatment didn't work and I want to push as hard as I can so I can live my life. And the doctors all say, well, yes, there are treatments, but they might not work. You have to accept that they might not work. And she says, I know that. But I need to have hope that they might because I want to live a long life filled with my family and friends and I want to see my grandchildren grow up.
And the doctors just say, Really Jane, we know that your cancer is in the early stages, and we could try to treat it, but it might not work. You need to know that, and maybe you should just put your things in order and enjoy what's left of your life.
That's kind of what this feels like, too.
The question of all questions for the infertile: When do I/we give up treatment and decide to live childless?
It seems like some have made that decision for me. Is it lack of experience with infertility and loss? Or is it just that I am SO very messed up, we are SO unfit or SO old, that even working to put things in order to get to a place where we can build a family -- biological or not -- is just that bad an idea and no one will say that?
I have to say, I really wonder.
Or maybe I should just let it go.
When do you let go of something because the chances are bad? When do you let go of something because it will hurt so much if it doesn't work out?
Jesus Christ, have I -- with the intractable depression -- with my feelings actually on the surface -- with that primal drive left wrought and bloody in a labor and delivery room -- have I proved right all those people who believed I was just a fragile little girl, incapable of dealing with (any realities of) life?
Maybe I am.
Leaves me very few choices, I think.
Friday, February 25, 2011
It's snowing and cold, which is a disappointment after the warm weather we had a week or two ago. Kind of feels like my state of mind. Up and down and all over the place.
After a week on the super-duper folate supplement, I called Dr. Shrink and told him how I was not only not feeling better, but possibly worse. Up and down, a lot. Or rather, okay and then terrible. A lot.
He asked if I had a family history of Bipo1ar. Yes. My maternal grandfather. (and lord knows who else.) He said that in some depression that is resistant to treatment, there may be other things going on like (sub-clinical) bpd. According to the research I've done, the hyp0mania just looks like normal, active, energetic, productive -- functional. And the depression is the depression. Started me on something for it, about 10 days ago, but it's the very low beginning dose so I have felt nothing.
No, not nothing. Headaches and poor sleeping. Sadder, if that's possible.
After my appointment with Dr. Shrink I had an appointment with my regular therapist, which went poorly, then tried to meet with my adviser who, after several delays told me she double booked our time. Fine. Teary.
Really tired of being teary.
Dr. Shrink had offered me the folate supp, saying that we may be moving on to another (more intense) antidepressant, the kind that is referred to only by letters, the one that begins with M. When I asked him, wasn't that kind of drastic, he said, "You're telling me you find no joy and pleasure in your life." He wasn't wrong.
Two days later, couples therapy, in which my regular therapist tried to communicate to me her concern about my state of mind, but did so in such a way as to make me feel even worse. Even C conceded this. She was worried, she said. Worried that my next steps my be ECT and that would have even more major implications on my life. Worried about how depressed I am.
"What can I say in response to that? Oh, okay, if I knew it was that serious, I'll get right on that." I asked her again and again, what do you want me to say? I don't want to feel like this, but I don't know what to do. It's not *just* grief* it's not *just* infertility it's not *just* depression. I'm going to therapy, I'm taking meds that are doing lord-knows-what to my head, I'm getting up and teaching when I have to, meeting when I have to, trying to work (and failing) I don't know what else I can do.
What do you want me to do?
I'm also failing my friends, feeling distant, far away, isolated from everyone who knows and loves me -- who reach out to me and I can't seem to reach back. My colleagues are pleasant enough, but I feel like a freak, disconnected -- talking too long, or not enough, or not appropriately. or so it feels.
And if I want to adopt, I can't be in this state of mind, I mean, "I wouldn't give me a baby." And she said it, too. "I wouldn't give you a baby. I wouldn't give you a baby with you like this. I wouldn't give you a baby.
Three times she said it. After I already acknowledged it.
And I hate my body, I say. And she says, "well, you've put on weight."
C said there were practically tears in her eyes during this session. Can you say "in over her head"?
I called Dr. Shrink and said I had concerns about my therapist, who, like C, said, "Well, are you looking for someone who has had the same exact experience as you so they can understand how you're feeling?"
NO. I just don't want to have to educate my health providers about the impact of infertility and loss on those experiencing it. And I told him that. Both of them. (Gosh, THAT must be why I hate my body. The weight. From all those cookies I ate trying to swallow all those feeling of gut-wrenching horror and grief. Oohhhhhh.)
Dr. Shrink said he'd get in touch with my therapist to get her perspective.
So, I did it anyway. I tried to educate my therapist about what it means to be infertile. About the lived experience of my nightmarish birth experience. I sent her links to resolve, and Mel's place, and I gave her a Word document of the posts I did for the anniversary account of those 10 days.
Tuesday was my next appointment. I gave her a copy of Mel's book and the McCracken book. She had read and went to the links I sent her. I asked her for her response to what I sent her.
She went on and on about how perinatologists and neonatologists, they try so hard, wanting to give patients hope, but you know, when there isn't any really, and you know, with births and epidurals, you really never know how it's going to go, like this one woman I know who labored so fast she didn't even have time for the epidural. "Did she deliver a living, healthy baby?" I asked.
And, my brother, he just wanted to help so much, he didn't know what to do. "Except he left the day the babies were born." Well, we all grieve differently.
We got into some discussion where she is trying to convince me to let go of all my dreams of motherhood, since treatments so far didn't work, and I was (evidently) such a mess and that of course i couldn't ever adopt.
And somehow we got to the question of what kind of reaction did I want from her, after reading the account. And I said something like, "I don't know... 'I'm sorry you went through that' or 'What a terrible experience' or even 'wow, what a story.' " You know, it's not like i was looking for her to weep and tell me god I had been through hell and how did I go on living and no wonder I'm so depressed.
She said, "Well, in all this time we'd been working together, I thought I'd already communicated that."
All I wanted, expected was just a small acknowledgment. A reaction, like, after you see a powerful movie for the second or third time and you just think, "wow." That's all. (C's response was, "did she say anything supportive at all?"
I had already handed her the McCracken and Ford books, so as I was leaving, I asked for them back. She gave me a funny look, hesitated and asked why. I said something like I didn't think they were relevant or that she already knew what she was going to know, so just give me the books back. More funny look, more hesitation, and she said I'll give them back to you in our next session.
I talked to my sister after, while sobbing, and she said, "Okay, that's it. We're going to find you someone who can help you."
And she has been working to help me find a therapist who has some actual knowledge/experience with infertility and might be willing to work with me long distance, like through skype or something.
I talked to one woman in LA who might be good. And talked to another who seemed totally, like, Wow, you need more than over the phone therapy. And I've reached out to a few friends in the mid-west and east coast. So we'll see.
If you know of anyone wonderful, I welcome the suggestion. Especially in SW Ohio. Where they tell me that I was doomed if I wanted to reproduce at age 39 or later.
Friends drop a line. They can see I'm not doing well by fb or just send me emails I can't seem to return. I'm weepy. These past couple of weeks have actually been among the worst. And it's not simply the loss. I feel damaged. broken. Mentally. Physically. Like I've ruined my career. My brain is so messed up from my biological history of depression and 2.5 years of meds that only sort of work. Or maybe I was messed up to begin with. Maybe there's bipo1ar to add to the mix. And maybe after all this I shouldn't be a parent, ever, anyway. Or maybe I never should have.
I called Dr. Shrink this week to tell him about my sleeping (waking at 4-6am) issues and that I think I may feel worse. He was quiet, and asked all the right questions, but I feel like I'm bothering even him. Frustrating. I can't even do this right.
I started out a superstar in my program and now the chair won't even look me in the eye. I'm disconnected from my work, afraid to jump in. Quick to anger, quick to frustrate.
I know C is sad and worried. My family is worried. I don't know what to say to them.
But I do have good hours. Good chunks of time where there is even some laughter. And I think, okay, maybe the new drugs are starting to kick in now. Maybe I'm getting better. Maybe just sorting out the fertility and family stuff will give me enough of a bounce that I can start living a little more.
That would be nice. But just like I had that doubt when folks said Mom's tests were headed in the right direction, I get that weird, disbelief, distrust in my gut.
But that would be nice.
The snow has stopped, mostly, and there seems to be sunlight pushing through.
The dog snoozes.
And it's time for me to take my pill.
(ETA: Today was not terrible. Not all that hopelessness I've been fighting, though I didn't interact with anyone but C. Writing helps, I think. Thanks for listening.)
*really long post.
Friday, February 18, 2011
What does it mean to be a woman in the 21st century?
In the debate in the House of Representatives (hah) Congresswoman (D) Speier from California was moved to share a very painful, personal moment in service of this cause. For those who could not or did not, she was able to stand up for them and say you will not silence me and you will not judge me for what I needed to do for me, for my child, for my family. This makes me want to move to her district. It makes me want to be brave like her.
Truthout had a brief column about her testimony, in which she speaks not just for women, but for every single American.
Make sure to watch her statement and check out the last paragraph for the article. I found it articulated what many of us in this community--- no, check that. I found it articulated what I find so important about the right to choose. That most women are intelligent, sensitive individuals who can (with or without their families) make grave decisions about their bodies, their lives and the lives of their families.
Planned Parenthood also posted highlights from the debate (3 mins from 3 hours), which I also found moving:
Saturday, February 12, 2011
My clotting disorder is MTHFR C677T.
Thursday, February 10, 2011
Monday, February 7, 2011
It's not simply the loss. Or the continued infertility.
It's what comes next.
It's pretty much looking like we're staying here for another year. C has been offered the visiting prof position again and thee job search came up with, well, not much in the way of options.
So. If we're going to try IVF, it's probably gotta be this year. So, we shell out Grandma's money and get a consult and try to go to the top place in NYC. Except I'll need some baseline testing (day 3 stuff), so where do I do that? Who do I go to to see if I can actually sustain a pregnancy? Who do I see to do that?
Should I actually get pregnant, I'm gonna need a lot of physical and emotional support. I figure I can find a specialist, but what about day to day? As is the nature of grad school and living/working in a college town, people come and go. My dearest friends, the kind i'd lean on are far away, and others in my program who I might be able to call on? I don't know that they'd even be here next year.
Of course, if I asked, I know I could stay with family in NY or LA. But that would mean being 1000 miles away from C. At least. And leaving this whole life on his shoulders.
Then there's tthe possibility of adoption. Which we are both open to, but which scares the he'll out of me. Finding the right march, the right relationship, hoping that pregnancy is healthy, and that the birth mother, whom I'm asking to make this enormous sacrifice doesn't change her mind. I know the chances are slim in that regard, but i've also learned that chances don't mean much til you're on the wrong side of them.
Besides, considering our grad school debt, living in a rental, year to year i.come, possibly moving in a year and our primary support systems in transition, *I* wouldn't consider us good candidates. We need to start researching anyway, and try to find at least a support group. To start.
I'm in so much flux. I look at pictures of my newest nieces and my heart aches. I was blowing kisses via sky-pe with the older one the other day.
I just get...flashes of emotion: joy, fear, anticipation around...I don't even know. Baby feelings, I guess.
And anger. And envy. And regret.
Maybe I'm starting to realize that this may be it for us. I've read others and how they've come to understand it and, despite the grief, they seem to embrace it. Maybe I'm reading into it, or misunderstanding them. But I'm not there.
I need to do something. Or any opportunity we have may pass us by. I think that would be the worst thing of all.
I can't seem to figure out how to shake the learned helplessness. And to feel hopeful again.
Hopeful is feeling a bit far away at the moment.