Saturday, October 22, 2016

The Birth VS Choice Divide: When loving people means making space for choices you don't like.

I've seen a lot of posts flying around, on both sides of the abortion issue. Rachel Held Evans posted a particularly compelling piece back in August that I recommend if you're of a conservative bent and open to some food for thought.

This morning I saw two posts that threw the whole debate into very stark contrast for me. One from a woman who was pregnant with a single child when something went terribly wrong, and the amniotic sac was partially through the cervix when she arrived at the hospital. Because of the laws in her state, she was repeatedly sent home over the next four days, even after she started bleeding, because the baby was technically viable, had a heartbeat, and termination was not permitted for any reason. There was nothing the doctors could do. Her child was loved, named, wanted. And could not survive. But because the law in her state does not allow a pregnancy to be terminated once there is a detectable heartbeat, she was forced to wait for four days, knowing that her baby was dying, at home, with no support but her equally devastated spouse, and when the inevitable finally came, it was that much more traumatic for the waiting.

The other post declared in strident terms that "late term abortions" don't exist. That abortion isn't necessary at all. That if a pregnancy is a threat to the mother, that's what c-sections are for. That all abortion should be banned, no exceptions, and that "ending a pregnancy" to save the life of a mother isn't an abortion at all. No mention of the myriad real life accounts of women being forced to wait while committees debate and courts decide. No mention of rape. No mention of incest. No allowances for mothers who had birth control or sterilization procedures that failed, who have abusive partners or simply cannot afford children. No mention of the struggles that will be forced upon those mothers by a culture and a government that cares only for a child born, and scorns anyone who needs help supporting that child later on. No mention of the hundreds of thousands of children waiting in our adoption and foster care system for families. 
It was purportedly written by an obstetrician. And it was written with so much scorn, such an utter lack of understanding that I cannot imagine anyone who has ever worked with pregnant mothers being so completely devoid of compassion. 

My heart hurts right now, for the women I know who have had to choose between their own life and the life of their wanted, planned-for child. Or had to choose between a short life filled with immeasurable pain for that child, or peace. The women who are being told that the brutal choice they had to make doesn't count as an abortion. Or that it does count, and they should have taken the chance of dying or letting their baby suffer and left it up to God, that they are murderers. The women who know intimately what it is to know that their baby is dying inside them, that their child cannot survive, that when the baby goes it may very well take mom along with it. What it is to be turned away from the hospital, sent home to await the end with no support because the laws in their state don't allow a "viable" pregnancy to be terminated for any reason. Or having to wait in the hospital while some faceless ethics committee they will never see passes judgment on their situation. 

The laws are written by people who have never, likely will never face that choice. Who decide in comfort and safety, without understanding the distinctions and situations they are playing with, what a mother can do to save herself, or save her child from a life that can't be lived. That is the horror that late term abortion bans force on women. Having the ability to accept pain for themselves to save their child from ever hurting taken away, and put in the hands of strangers.

It's a devastating choice I hope I never have to face, but I know that if I ever do face it, I want me, my husband, and my doctor to be the only people involved in that decision. And honestly, I hope I'm strong enough to choose to live, for the children I have at home. I hope I'm strong enough to choose to return that innocent soul to an existence without pain, rather than force them to suffer to save myself guilt. Just like I hope that if I am ever faced with having to turn off the life-support for a child who is so damaged that they will never draw another pain-free breath, and they are unable to decide for themselves, that I would have the strength to let that child go too. 

Ending a wanted pregnancy to save the mother's life, or to spare the child pain that can't be fixed or made better, these are choices no one should ever face. But some have to face it, and it's hard enough already. It doesn't need to be made harder by having their last shreds of control stripped away by politicians who don't understand how the laws they craft will endanger the women those laws affect, and care nothing for that child once it has slipped from the womb.

These aren't just stories on the internet to me. I know women who have been faced with that choice. I see how they struggle for the rest of their lives with the guilt, the shame, the aching never-ending loss. And I hurt for them, as they watch yet another round of pro-birth rhetoric threaten the already shaky ground they stand on. I watch their fear, as Roe Vs. Wade is threatened, as infanticide laws are used to arrest mothers who miscarry and mothers who access legal abortion services, as laws requiring funerals for miscarriages become reality. I see their helpless rage when the same people who took their choices away on the most horrible day of their lives are  also the people who want to cut funding to social safety net programs that feed, clothe, house, and provide doctors for the children that women are made to bear against their wishes, beyond their ability to support. The same people who let our disgustingly ineffective adoption and foster care system go underfunded, understaffed, and plagued with abuse and corruption. The mothers who bleed over this are not strangers. They are friends. They are people I love. They are real. I see them. I hear them. And I can't in any sense of conscience vote to take their choices away.

Friday, May 13, 2016

Chronic pain is a thing. We need to do more about it.

I saw this article wander across my feed today...   Taking Painkillers All the Time Doesn’t Make Me an Addict.  In it, Ms. Jen O’Neal responds as an EDS patient to a doctor (who has been treated for addiction to painkillers) who thinks that all drugs across the board (except marijuana) are evil.

It struck home.

Chronic pain is something that we demonize in this country, because for decades we have taught ourselves that anyone who depends on medication to survive and function is an addict, and addicts are weak, failed human beings. (No, they're actually not, but that's a different rant.) And because we equate medical dependency on pain killers with addiction to painkillers, people like me, who don't have mountains of medical history paperwork because our cases are relatively "mild", well, we just choose to live in pain, because getting treatment is adding one too many battles to a life that is already a war.

I have enough on my plate without a years-long fight for disability benefits, or presenting my case to doctor after doctor after doctor, praying I get referred to somebody who remembers the two sentence description of Ehlers-Danlos in the single lecture on chronic pain from medical school. I'm not exaggerating, I've actually been told straight up by the best family GP I've ever had that the single chronic pain lecture is where she remembered hearing the name "Ehlers-Danlos Syndrome". She had to look it up. I've had other doctors blink at me in absolute seriousness and express some variation of, "You have ... what, again?"

The one time I was on pain meds that worked, the doctor I was going to came under investigation for writing too many pain scripts, so he referred me out, to a Rheumatoid Arthritis specialist. Who took one look at the way I was standing (knees completely locked for stability), asked me to touch the floor, and wasn't the least surprised when I did it with flat palms without bending my knees. She knew exactly what I had, and sent me away with a new script for the same medication... at a dose that was half of what I had been taking. Without telling me. And because I was so relieved to have a proper diagnosis at last, because I trusted her, I didn't look. So I ran out (even though I only took it on days I was working), 10 days before I could get a refill, and because it was a bad pain day and I had to go to work that night and was facing a 10 hour shift on my feet, I burst into tears at the pharmacy window. Not my finest hour.

I never picked up that refill, because that one experience of "okay, we've got a druggie" looks from the pharmacy staff and every shopper within earshot was humiliating enough. I toughed out my job (that I loved, and was GOOD at, dammit), for another month, and then I quit because I was losing any semblance of stability in the face of that much constant and aggravated pain.

I haven't been to a doctor for the EDS since, and I can't bring myself to apply for disability. Which means I walk two miles every day, good day or bad, because it's teaching healthy habits to my kids, knowing that I'm buying myself hours of significantly increased pain. It means that my resume, which is 90% food service (I was a manager, for fuck's sake) does not qualify me for any job that I can physically handle, and even though I would totally kick ass as a secretary or an office manager or an executive assistant (because I'm also autistic & keeping stuff & people organized is my JAM), I don't have the experience to be considered against people who have been in the field for a decade. So no job, because I can't face convincing a doctor, and another doctor, and another, and then the pharmacist every time I pick up a refill. No disability, because the idea of that process of apply - deny - apply - doctor - deny - apply - doctor - doctor - doctor - deny - repeat until it goes to court - approve ... the thought of it looms before me and laughs as heartlessly as any cartoon villain. I can't. Just can't. Don't have the wherewithal.

And then I find out that Ohio legislators are thinking about legalizing medical marijuana, which the studies are showing does wonders for chronic pain conditions... except the proposed bill only recognizes 20 conditions where patients would be eligible (you guessed it, EDS didn't make the cut), and even then it's so restrictive as to make consistent pain management nearly impossible...

But sure, go right ahead and judge me because I'm not a size 6 and there's a pint of Haagen Daz in my grocery cart. Go ahead and tell me "just apply for disability, since you're so sure you qualify", when you don't know that the genetic test for my condition isn't reliable because they haven't fully mapped out the human genome yet, so they have to go with a clinical diagnosis, which means I am at the mercy of the doctor, who may or may not have the slightest clue what Ehlers-Danlos is or how it presents or what it means for quality of life. Go ahead and tell me how self-hypnosis or prayer or crystals or dietary supplements or therapy or massage or yoga or gastric bypass (yes, the fat-shaming was awesome) cured your "constant pain". Go ahead and tell me I should just suck it up and get a job. Go ahead and tell me "wow, I'd love to be a SAHM, and with a sister living in to help with the kids too! I'm so jealous!" Just let me inject some ground up glass into your joints and have you walk around like that for a mile or so. Then we'll talk.

We can't keep ignoring and shaming chronic pain. It is destroying lives, and treating people like criminals and failures because they'd like to be able to stand or sit or breathe or work without hurting leaves far too many with nowhere to turn.