In the mid-80s, when I was in my early 20s, I started having awful pelvic pain. My abdomen would feel so swollen and tender that I couldn't stand to have the waistband of my panties touch it at times. I cut the elastic band out of my underwear to wear during those times. Believe me, your panties don't stay up that well without the elastic, but I couldn't stand something as simple as the waistband of loose underwear. I guess it just hit at exactly the wrong spot.
I'd collapse on my sofa with a heating pad and just exist. I'd go to my doctor and cry on the examining room table.
He finally diagnosed me with endometriosis, which can be incredibly painful, a disease where menstrual tissue grows outside the uterus and creates big sores inside your body, wraps itself around your internal organs and gets a choke-hold on them.
It can also leave you infertile.
Lovely. I was 25 or 26. It's mostly a blur now.
The doctor said it was no problem. He'd operate. Laproscopic surgery. Tiny incisions, cut the stuff out. I'd be fine.
What he didn't tell me is that the stuff often grows back. Same hormones. Same screwed up body. Yeah, it grows back.
I had the surgery.
He said my case wasn't that bad, that he was sure he got it all. No problem.
Six weeks later, I was back crying on his exam table.
He was quite puzzled.
What he'd done should have worked. He really didn't know much else to do, except tell me to try to get pregnant, because the high hormone levels in pregnancy can sometimes burn off the endometriosis and sometimes, it doesn't come back.
(Can you imagine how fun sex was if I couldn't stand to have my underwear touching me.)
I started researching the disease. There wasn't a lot doctors knew at that time. I'm not sure if it's much better now.
They talked about putting women on birth control pills continuous, no periods, just that one level of hormones. With my hormones already going crazy, that didn't seem like a good option.
There were other operations they could try, taking out the lining of the pelvic cavity or something like that. Some experimental drugs.
And one drug that looked good. Really good.
But we'd never get it in the US.
Because the drug was RU 486, and it also happened to induce abortions.
Now, I wasn't looking for an abortion. In fact, I was really scared at the time that I'd never be able to have children, thanks to this disease.
But the idea that anyone else's political opinions would dare leave me without a medical option that would have worked for me, for a disease that had nothing to do with abortion.... I was outraged. Endometriosis sufferers tried to make that case at the time. No one cared.
And we didn't have a fatal disease, like Michael J. Fox, just an incredibly painful one.
So I know a little of what Michael J. Fox feels. As someone said elsewhere on the web, he has shown incredible grace in his response to what he will now endure. I wouldn't have been so graceful.
I would have wanted to take those people who said I couldn't have that drug and make them feel what I was feeling. The hopelessness. The bewilderment. The anger. The fear. Every bit of it.
I want them to feel it, and then I want them to have the nerve to say, "No, you can't have the drug."
Or I want them to watch their loved ones go through the same thing. Sadly, many of them will.
And like Nancy Reagan and her reversal on stem cells, many of those people will change their minds too late.
People they love will die of terrible diseases, all for a handful of arrogant, judgmental people's so-called morals.
I was watching an award-winning HBO film a few months back about the doctor who performed the first open-heart surgery.
Great film. Fascinating.
People thought he was doing things that were an abomination against God. That it was sacriligious and should be banned.
Because he was messing with the human heart, considered to be the area of the soul. God's area.
Same stuff they're saying now about stem cells.
And how many moralistic republicans would turn down heart surgery now because it went against their so-called religion?
None, I'm sure.
Footnote: I got lucky with my problem. I found an alternative healer (A Jin Shin Jyutsu practitioner) who was a miracle to me.
The pain subsided enough that my husband and I managed to get pregnant, and I was one of the lucky ones. Never had a problem with endo after that pregnancy.