April 13, 2005

Lack of Conscience

Medical and reproductive issues are the front line in the right wing assault on privacy rights. No decisions are more crucial to keep in the hands of patients and their doctors, and unfortunately, nothing conveys the necessity of that quite like a first hand story from a survivor.

The far right benefits in their crusade on our privacy from the fact that people are embarassed and don't want to share these stories. A case in point is the fact that I'm posting this about a week after it was written, because I don't especially want to share mine. Even though I've been fine for years and the bills are long paid, it's an awkward subject.

A sentiment not shared by people who don't feel in the least bit awkward about intruding into the most private, and sometimes wrenching, decisions of perfect strangers to take away choices whose consequences they'll never have to face. Not even in the court of public opinion.

Thing is, laws and policies always have consequences. Without facing that, debates aren't talking about consequences but about 'shoulds.' This should work. That should have the desired effect. People should do XYZ, they should know better. Until you get to 'does' and 'did,' you're just yapping, justifying the end by the means. So here's another data point, something that did happen, and a couple things that could easily have happened.

A good few years ago at what turned out to be the tail end of a marriage both bad and ridiculous, I discovered that I was pregnant. It was one of the rare times that we'd had medical coverage, so when my stomach started hurting so bad that I almost doubled over, I was able to go to a doctor.

They confirmed that I was pregnant, but said that my hormone levels were all wrong and sent me for an ultrasound. That uncovered a 3 kilo ovarian cyst that had been hanging around for nobody knows how long because I hadn't had medical care for six long years. I was told that it required immediate how-fast-can-you-put-your-things-in-order-and-get-on-the-schedule surgery, and that I could bleed to death if it should burst for some reason. It was suspected that the condition was aggravated by scarring from a major abdominal surgery I had as a child.

If I didn't miscarry naturally, and you should have seen the look I got when I asked what would happen then, they couldn't perform either the surgery or an abortion because it was a Catholic health care service. It would have cost us money we definitely didn't have to go outside the network, and the bills from the surgery destroyed both of our credit records for a long time to come, even though we were climbing out of our all-Ramen-all-the-time years. Oh, the fabulous freedom of a free-market healthcare system.

Fortunately I didn't have to explore that universe of 'there but for the grace of God.' I did miscarry, a little less than a month into it, and a few days after the pain started. My stomach hurt so bad I could hardly walk. I had to mince slowly along, and I discovered just how many different postures and movements require the active support of the stomach muscles. Even holding my arms up to wash my hair for a long time was exhausting, and I ended up cutting it short when I had to start work again and didn't have the energy to take care of it.

I was in the hospital for about four days after the surgery. I left in a wheelchair and didn't go out my front door for over a week. For those first few days, I had to set my alarm clock every four hours at night or I'd wake up when the pain medication wore off, clenching my jaw until the next dose kicked in. It took another month and a half before the huge (Dude, it was like *THIS* big!) seam in my stomach was healed up enough to let me move around faster than my grandmother, who was recovering at the same time from a hip replacement.

Point being, it was a serious and invasive surgery, done only because it was necessary. Which I mention because 'female problems' anywhere short of cancer like fibroids, cysts, and endometriosis get talked about like they're never more serious than a case of recurrent sniffles.

After about six months, when I thought I was completely out of the woods, I started hurting again. It felt like a milder version of the pain that started off the whole mess, hardly enough to worry about, for a couple days a month. When it became apparent that it was getting worse, and that I was going to get in trouble if it caused me to miss any more work, I went back to the doctor.

The diagnosis was a recurrence of cysts. The prescription was birth control.

Lucky me, I live in a state where pharmacists have to do their jobs or find another line of work. I was no longer married then, and after a lot of recent and bitter wrangling, I wouldn't have been up to the task of explaining to some ignorant busybody that I really needed my prescription. The surgery had ended up costing me an ovary, and I was petrified of losing the other one, or losing my job because of missing too much work for more inpatient treatment.

If I hadn't spontaneously miscarried, I might have been faced with the choice of a medically dangerous pregnancy or an abortion that wouldn't have been covered by my insurance. Then there are parts of the country right now where if you're poor and transportationally challenged, you can't get an abortion even if you manage to get the money together.

What if this had happened when I was a minor in a state requiring parental consent for an abortion, and I hadn't been lucky enough to miscarry? I can tell you with absolute certainty that my fundamentalist family would have been praying over my hospital bed for a miracle until the day I died before agreeing to an abortion. You think they would have changed their minds? Well, my father decided to die over the course of three long years of pain and suffering rather than accept a kidney donation from his mother. He left a new child, born soon before he became gravely ill, and it didn't change either of my parents' minds about the right course of action. It didn't fit their conscience, so you do the math.

If this happened today and I was living in an area where the local WalMart had eaten all the other pharmacies for miles around, I might be in deep trouble when I needed to get a prescription filled to keep the same thing from happening all over again.

Why is it that my health ended up hanging on a combination of sheer luck, timing, and an accident of geography for a medical condition which is tediously common, even if not usually so extreme. I didn't have a rare tropical disease that no one had ever heard of. I didn't have the type of complex heart ailment for which people have to be airlifted to far away research clinics. I didn't require an organ transplant for which there are scandalously long waiting lists. None of that.

Because I'm a woman, a routine medical problem for which there was a widely known treatment could have become life-threatening. Because I'm a woman, the medication which prevented a relapse might now in some parts of this country be denied to me at the whim of a pharmacist who doesn't even know me. Because I'm a woman, there are people who think they should get a say in my private medical decisions. People who think they have a right to endanger my life because some medieval-minded lunatic needs to get the faithful worked into a lather.

I have two words for those people and their so-called 'conscience.' Take a wild guess what they are.

Posted by natasha at April 13, 2005 03:47 AM | Health/Medicine/Health Care | TrackBack(7) | Technorati links |

Bravo to you for telling your story. Once again, you have framed an issue in a clear and concise fashion that strikes at the core of the matter. This should be required reading.

Posted by: Scott at April 13, 2005 06:02 AM

I would cross-post this on a Kos diary. More humans need to read it. Great work, thank you.

Posted by: paradox at April 13, 2005 09:06 AM

Great post. Thanks for your honesty. It takes a lot of courage to tell these stories, and it's a shame because our silence allows people to pretend that this sort of stress is less common than it is.

Posted by: Amanda at April 13, 2005 12:45 PM

...as you can tell from the trackback, I've linked to this on both blogs that I have the keys to. Supurb post, Natasha...

Posted by: Jack K. at April 13, 2005 01:13 PM

Just a wild guess, but I'll take a shot . . .

Is the second of the two words "you"?

Posted by: TomR at April 13, 2005 04:58 PM

Thanks very much for this post.

Posted by: jnfr at April 13, 2005 05:31 PM

I was very hesitant to even post this, thanks for all the positive feedback.

TomR - That's a really good guess, but I'll never tell ;)

Posted by: natasha at April 13, 2005 08:33 PM

...never be hesitant. It may be a good idea not to look for the replies (some of the replies from my "letter to the editor"-writing days could generate enough heat to spontaneously ignite the newspaper...and then there's that one angry reponse from the Klamath County, Oregon, District Attorney that I still struggle to wipe from my nightmares), but I've learned over a good portion of my 50 years that if you have something you really need to say and it won't attract the attention of the Secret Service or the FBI, then you should go ahead and say it. Some folks may be unhappy, but they can't kill ya and eat ya....

...and I'll bet the first word was "the heck with..." to go with TomR's guess of "you" for the second word....

Posted by: Jack K. at April 13, 2005 09:07 PM

Thank you for writing about this. I don't know about you but I take leadership on these issues when I can find sensible voices. I really look forward to your posts because they are right on the money.

Posted by: gregg at April 14, 2005 08:11 AM

While I don't want to sound like a callous jerk, I think you are more than a bit misleading with the crack out "free market health care". We sure as heck don't have a free market for health care in this country. Medicare is a ginormous health care program that eats up quite a few health care resources. Also there is Medicaid, and other government run programs. On top of this there are laws that prevent hospitals from turning away those who can't pay. Our current system is a mish-mash of socialized and private health care. And yes, it is a wreck, but to portray it as a free market is well beyond absurd.

Posted by: Steve at April 14, 2005 09:56 PM

Steve - If you click on the link, it goes to a Kevin Drum post defending the idea of single-payer healthcare. I'm not really in disagreement with you, but our system is commonly referred to as a free market system and I thought it made a good joke.

Indeed, I may not have been sufficiently clear about my intention to snark, but I thought that putting that line in after explaining how my private insurance trapped me into a particular hospital, and how the bills ruined my credit, all after having been entirely without coverage for many years, well, I thought it might be self-evident that my use of the term was ironic ;)

Posted by: natasha at April 14, 2005 10:19 PM