Friday, April 11, 2008


(First, thank you for your comments on my freak out yesterday. It means a lot.)

I have about 17 posts rolling around in my head right now, but in the wake of the last 24 hours, I'll just get this one out.

When did you realize that your parents were not perfect? That they did not have all the answers? Or, instead of parents, a trusted relative, caregiver, teacher...? I don't have a specific memory of my disillusionment about my parents, but one small one with my sister. I caught her in a lie, really a very small one about who left the TV on, I think, but I remember my incredulity. As a younger sister, I did the traditional "looking up" to my sister. I wanted to be like her -- hell, I wanted to be her for a long time. But I remember stopping -- literally stopping on the stairs in my house -- and thinking, Wow. She's lying. She's not perfect.

I lived a lot of my life believing in the fairy tale that people were honest, and did their best, and that their best was usually right. I took a lot on face value, and continued to be surprised and hurt (and I cringe at this naivete) at others' deception, lies and fallibility into my 20s. Yes, I was the one in the rose colored glasses. If I were the type to put bumper stickers on my car, I would have had one that said "it's all good." Or, "everything's gonna be all right." Even if people screwed up, certainly everyone meant well, right?

One of the biggest lessons for me in my 20s was that *everyone* is fucked up in his or her own way, and that some people are better at hiding or disguising it than others. The idea that everyone had their issues, and I was not the only one lacking in confidence or direction or excellent credit was HUGE for me. I wasn't the only freak.

It was in my 20's, the latter half, that I really started to come into my own, "blossom" as several family members -- and my husband-to-be observed. (If you've never read the children's book "Leo the Late Bloomer," do. So sweet. Makes me cry every time.)

It was around 30 that reality started to really hit. I took a job with a just before the bubble burst. The job sucked, the guy I had worked with at a previous job, who recruited me, treated me like shit and essentially lied to me. Then my mother was diagnosed with aggressive, fatal ovarian cancer. She was sick the whole summer of my 30th birthday, but didn't know it. The doctors thought she had a UTI for two months. And she didn't push, just thought she felt crappy. Ultrasound at her annual showed a huge mass on her ovary. She got surgery, she got chemo at one of the premier cancer centers in the country. Didn't matter. Didn't work. The head of gynecologic oncology at this cancer center essentially washed his hands of her, and she died a couple of weeks later, 5 days after starting hospice. 9:15am, May 4, 2001. Hospice screwed up, in several ways and didn't stay with us while she was dying. The nurse gave us crappy advice, and then left.

I remember driving around Boston, on some errand during the time my mother was sick and seeing a car with a bumper sticker that said "it's all good." And I thought, Fuck You. No it's not. And I realized I had changed.

My sucky employer continued to be sucky. I left, they said I owed them 2 days of pay (about $300) because of all the time I took off while my mom was sick (she was still alive at this point). Then after she died, my new employer gave me 2 months to be sad, and then said I really should be doing better by now.

Then it was September 11. In Boston. My dad had worked in the World Trade Center and across the street before he retired a couple of years earlier. He still had friends there. My aunt and uncle lived uptown. More loss, more pain.

I left that job, too, and found myself, and got married and found myself some more... We moved to the mid-west for grad school. My idea of reality, of people's "goodness" or fallibility broadened.

I could list 5 experiences off the top of my head that opened my eyes about the fallibility of modern medicine, just since 2001. trying to get pg, trying to stay pg, trying to be healthy and pg, trying to figure out how to save my boys, JK's dad's treatment, K's regional cardiac treatment vs his NYC treatment. Hell, even the vet here is responsible for 2 months of my dearly departed cat's suffering.

In all this, I've railed at people to advocate for themselves, and ask questions and push doctors. Advice easier given than applied. I look back at so many experiences and say, "why didn't I ask? why didn't I push?" And then, I think, "Why didn't the doctors?"

In this day and age of technology and shrinking worlds and specialization, I think medicine (at least for me) still is one of those fields I desperately want to believe in. Science. People expertly trained, people we can trust to take care of us. Whom we don't have to constantly question or push. People who are supposed to treat us with respect and who will work hard to make sure we get the very best individual treatment, who will be careful in noting important information. Who will be proactive in our care. People who will advocate for us based on their expertise.

Do you know how many people said to us, "if only we had a crystal ball"? Crystal ball?? Are you fucking kidding me??

I guess, in a way, I want to trust doctors like a child should be able to trust his or her parent, to keep us safe, and do what's best for us. Maybe this is the last frontier in growing up. No one has answers. People generally do their best, despite their own imperfections and neuroses. I have to depend on myself to guard against those imperfections and neuroses to take care of myself and mine. There are very few safe spaces in the world, as a grown up. Figuring out those spaces, and trusting in them is possibly one of the biggest lessons of this period in my life.

It occurs to me that the womb should be one of those spaces, too. Wish I could have provided that for my sons. One of these days I'll forgive myself for that, I hope, just as I forgave my own parents for not being perfect.


G$ said...

This is something I am still struggling with. The loss of trust for doctors, the loss of innocence that sometimes, they aren't there to make you better, they are just there stroking their egos or licking their wounds. Hindsight is 20/20 but WTF, I should have been treated with a lot more care and compassion.

Now, looking forward, the rose colored glasses are off. I must advocate for myself.

But when I walk into that exam room, I feel myself turn back into that scared little child who is just looking for her parent/doctor/teacher to make things better. They have to have the answers. I feel powerless and helpless with some doctors. Now I have to figure out, assess that and change doctors when they make me feel that way. Right?

This shit sucks man, seriously, it has changed us in so many ways that each day we realize a new one. Asssstastic!

Amy said...

I work in the medical field, therefore I think my "rose colored glasses" came off a long time ago.

I make lists, ask questions, tell them what I want, if they don't do it, I find a new doctor. I'm kind of a bitch that way. I think I learned a long time ago, they are people too. They aren't the police, or a judge, they are people who went to a hell of a lot of school and if they didn't go into because they love it they went into it for the money. Not anything any DR. should do.

You had nothing to do with losing the boys, I know it doesn't feel that way and I do believe that one day you will forgive yourself. That is the hardest part of all of this, forgiving ourselves the mistakes we think we made.

Newt said...

Bleargh. I hate it when they make that crystal ball remark. Especially because I'm just asking for something simple, like a doctor to do her job.

When I asked her what our chances of m/c were, my old doctor used to like to say "statistics don't matter until you become one." What does that even mean? She seemed to think I should just trust her to worry about the odds, while we live in happy ignorance. Neither happiness nor ignorance were options at that point.

Anyway, I know it's crappy to lose that optimism. And I know you've been through some things that are so shattering, all the negative parts of this journey are magnified tenfold. And I'm so sorry.

I'm a late bloomer, too.

Tash said...

Funny, I totally trust my doctors, it's the technology that I feel is woefully behind. I'm completely and utterly stunned that in 12-14 ultrasounds, no one ever saw anything wrong with Maddy when here she was born with multiple, severe problems. But ultrasounds only pick up certain things, and all of her horrible problems lay in the realm of the unreadable, the unseeable, the undetectable. Ditto for Amnio.

I wrote somewhere else that before all of this I felt young, and now I feel very old. I was a very young 37. And I too figured that "family sticks by you!" I would have never pegged my IL's for people who opted out of memorial services for their dead granddaughter. Not in a million years.

luna said...

watching someone you love succumb to such a horrible disease when you feel so powerless changes anyone with a heart. I'm so sorry that on top of losing your mother you had to deal with medical ignorance as well...

also I read your last post and my heart goes out to you... hope you can find some answers to help bring some peace in time...

and of course thanks again for your support. ~luna

c. said...

Amazing how much faith we put into the system of medicine. Meanwhile, my son's (non)life mattered so little they can't even be bothered to study stillbirth to any great extent or do anything other than say, "It happens."

Our experiences only seem to exaggerate how very fallable medicine can be.

I'm sorry you lost your mom. It must be even more difficult not to have her given the last few months.

Julia said...

I know, every time I think about it, how lucky I am to have the OB that I do. Trusting a doctor is not automatic for me, and isn't even all that common. But I trust this doctor for too many reasons to mention here. And then I think about how it shouldn't be luck, it should be the norm. It makes me sad and mad to think about, to know, how many others do not get the benefit of a doctor like that. Even one doctor like that, not to mention all their doctors.

I do hope you find a way to forgive yourself, or to realize that there is nothing to forgive. You are not your body, and you didn't cause any of these horrible things to happen, nor did you have any power to stop them from happening.