Why I believe in informed consent and medical choice

Doesn’t everyone? Not really, it seems. Some people seem to think that there are any number of valid reasons that should override an individual’s right to consent or decline medical treatments. I’m neither a legal scholar nor an expert in ethics (to understate things to the extreme!) but I would like to explain why this issue is important to me personally. Here are my main reasons:

  1. I was raised by a survivor of Nazi Germany. In addition, one of our dear family friends was a concentration camp survivor. I grew up hearing about the horrors of the medical experiments carried out by Nazi doctors. Unless you or one of your parents suffered under totalitarianism, you probably have no idea how that shaped my thinking about freedom, the role of government, the rights of citizens, etc.
  2. When I was in high school, the horrifying Tuskogee medical experiments were in the news. I was both frightened and ashamed of my country.
  3. In the 1980’s, I became active in an organization that was seeking to stop the alarming high rate of medically unnecessary cesarean sections. What was troubling was how poorly mothers and babies in the U.S. fared compared to other countries with lower c-section rates and different obstetric practices. I became appalled at what I learned of the history of obstetric care in this country, the misinformation being given to mothers, and how mothers of not just my generation but pervious ones had to fight for better care and better hospital practices. We had science on our side, but it seemed like we were fighting a losing battle. We were no match for the medical industry.
  4. During that time, I also discovered that most doctors learned almost nothing about breastfeeding or nutrition, and were often the source of misinformation that many of my peers began jokingly referring to as “old doctors’ tales”. Again, we had science on our side… but that wasn’t enough. We couldn’t reach every mother, and we couldn’t fight the medical system. (Although, years later, I was excited about the strides made in changing many hospital policies that undermined breastfeeding.)
  5. I also learned, through bitter experience, that our medical system often withholds information from patients. It may not always be deliberate — medical professionals cannot inform us of something they themselves do not know — but our system does not always welcome questions, provide information regarding other treatment options, or disclose all of the potential side effects of treatments and medications. (Think of all the things we’ve been assured were “safe and effective” that turned out to be neither for far too many people.)

In short, I simply don’t like the idea of allowing either my government or medical professionals to make medical decisions for me. Ultimately, it’s not just a matter of wanting the freedom to make my own decisions; it’s also a matter of being the one who has to live with the consequences of those decisions.

Back when I thought the vaccine issue couldn’t get any more heated…

I recently stumbled upon a blog post I wrote about vaccines way back in 2015. From today’s perspective, those former debates seem downright docile and friendly.

That was pre-COVID, of course. For those who have forgotten, that was before people announced their vaccination status on Facebook, before people began their Christmas letters telling you that they were double-vaccinated and boosted (as if that was the most important event of 2021) before I saw a fully vaccinated and boosted medical doctor fly into a panic because she came within six feet of a healthy double-masked unvaccinated person, before I heard people advocating loudly against informed consent, parental rights, medical freedom, and medical privacy.

Fear is powerful. Now this nostalgic read makes me chuckle and long for the good old days. Things seemed so much simpler back then.

“I weigh in about vaccines”
— Read on rebeccaprewett.com/2015/02/08/i-weigh-in-about-vaccines/

Today’s news

Adapted from what I posted on Facebook:

I just heard the news.

No doubt some of my friends are feeling like dancing in the streets because their guy got confirmed to the Supreme Court.

No doubt some of my other friends are devastated, because this feels like yet another crushing, wounding blow to many sexual trauma survivors — especially to those of us who have to live daily with the fact that, although the horrors of our assaults are seared into our brains, we don’t remember details like dates, times, locations, and exact time lines.

Please don’t comment by arguing the merits or credibility of Dr. Ford. Not here. I was not there at any party she or Judge Kavanaugh attended, and I doubt that any readers of my blog were there either. But when you tell me how you think a sexual trauma survivor should be able to remember things, or how and when she should come forward, or how she should conduct herself, you run the risk of treading dangerously close — and maybe crossing the line — to criticizing and slandering me and people I hold dear… even if you don’t name us by name.

I excuse a lot of what people say because some people are ignorant and don’t know better. Heck, I used to believe a lot of the same sexual trauma myths myself. The lies and misinformation I’d been fed didn’t just hinder my healing, but damn near killed me. Literally.

But these past couple weeks, I’ve heard more dangerous nonsense about trauma than I can stand, and I’m fed up.

To all my sister and brother survivors out there: be gentle with yourselves. Remember, we were not and are not on trial, no matter how things may feel. If you haven’t done so yet, find your “tribe”; find your allies who will stand with you… compassionate people who will sit and weep with you if that’s what you need.

Take a break. This morning I went for a wonderful walk on the beach with two terrific women. Pet a dog. Hug a baby. Take a deep breath. Kick and punch the heck out of a heavy bag. Do yoga. Whatever works for you…

Seek out what is good and true and beautiful. It is still all around us.

I know who I am. It would be nice if the whole world agreed with me and recognized and supported me. But that will never happen. So today I took a walk on the beach, and prayed with some allies, and forgot all about politics for almost 3 hours, and remembered how good my life really is, thanks to the grace of God.

I want all survivors to experience that peace.

False narratives

There are people who believe we create our own reality, or that we somehow attract into our lives the events — even the worst of trauma — that happen to us. Some of that sounds new-agey and off-putting to many Christians, yet a similar ideology has crept into many churches as well. Recently I posted the following to a discussion of some of the impact Norman Vincent Peale’s positive thinking message has to this day:

Many people have no idea how much Peale’s positive thinking ideas have infiltrated so much of Christianity, and have impacted people who have never even heard of the man. I have a friend who would not even tell me what she had been diagnosed with and — when I insisted on knowing — she whispered the name of her condition as if she was forced to pronounce some horrible obscenity and hoped no one would actually hear it. Her reason? She didn’t want to “come into agreement” or “speak out” anything negative.

…then there are those who refuse to “hear a bad report”. I’m all for not listening to gossip, but I think it’s silly to avoid negative news about someone, and I think it’s dangerous and immoral to silence those who are victimized by someone else. There is nothing righteous about burying one’s head in the sand and refusing to hear anything that might make us uncomfortable, challenge our worldview, or even cause us distress.

I wonder if these people, who claim to be Christians, actually read their Bibles. Thing is, the Bible is full of “bad reports”. The prophetic books of the Old Testament seem to be focused on getting people to wake up and face some hard truths about themselves and about their society. The Psalms are not “happy clappy songs”, but are all too often laments. (I didn’t understand this as a kid: why did God not punish King David for all his complaints, and why on earth were they included in the Bible?)

That’s not to say that those of us who claim to be Christians should be all doom and gloom, and focused on negativity. But I would think that those of us who claim to have an eternal hope, those of us who claim to be in relationship with the God of the Universe, would be able to be capable of facing reality without playing all sorts of mind games, pretending away what we don’t like, and claiming that perception matters more than truth.

Today I was reminded of a flip side of this: negative thinking versus positive thinking. Actually those are not the only two alternatives, contrary to what some people have insisted. “Negative thinking” — focusing on the negative to the exclusion of the positive — is just as much in error as its opposite extreme.

Perception never matters more than truth, even when it is our own perception.

For most of my adult life, I believed a false narrative about God and about myself. That doesn’t mean that everything I believed about God was a lie, or that I was delusional about myself. While most of what I thought and believed was based on truth, the way I lived my life, the way I interacted with people, the way I prayed, the way I interpreted situations — all that was woven together in such a way that was not completely true. I am still unraveling the general narrative I created about life, and holding it up to what I now know and believe to be true.

A big part of therapy for me was what I eventually called “replacing lies with truth”. A wonderful couple that ministered deeply to me preferred to call it “replacing ungodly beliefs with godly beliefs”. Much healing has come to me as a result of pondering the question: Will I allow myself to be defined by my past experiences, traumas, and sins, and by what people tell me about myself, or by the God Who created me, loves me, and knows me best?

For years, the people I was most comfortable with were those who agreed the most with the narrative I’d woven together to make sense of my life. I was filled with self-blame and shame, so it felt familiar to hang out with people who blamed me and shamed me. There were a lot of things about me that I viewed in a negative way, and I thought people were a bit daft if they didn’t agree with me. Now I wasn’t all negative — in fact, I would get quite annoyed at people who didn’t affirm what I thought to be my good points. While I don’t believe in what some call the “Law of Attraction”, I do believe that we tend to choose to associate with people who feel familiar, who agree with us for the most part, and who don’t try to shake up our entire worldview. So, whether it’s intentional or not, we often tend to befriend and even marry people who will reinforce our beliefs about ourselves, about God, and about the way the world works.

I’m reminded of a woman I know who married a man who — even before marriage — described her in rather negative terms, and let her know by word and deed that she wasn’t very important to him. And you married him? several people asked her. Even after the things he said and did to you, the way he insisted that his friends, family, and career would always come before you? She would answer, “I couldn’t blame him. He was right. I’m not that important, and I should be thankful that someone like him would even want to marry me, with my past and all my faults.” She and her husband may have been in agreement, but it was with a lie.

For years, I believed that certain things I had done left me somewhat tainted. Yes, God forgave me, but… Because of that, I surrounded myself with people and with churches and with teachers who agreed with me, who reinforced my narrative about a God who forgives but somehow isn’t quite able to wash every last stain of my sins away. I even allowed someone close to me to repeatedly remind me that I was not “pure”.

And then…well, I realized the lie of that. What upset me most — once the lie was exposed — is not that it was a false accusation against me, but that it was a false accusation against my Savior, as if His blood shed on the cross was not fully capable of cleansing sins as grievous as mind. (I’ve written posts about that, and about the whole “purity culture” thing on this blog, as I’ve worked through much of the false teaching I once eagerly embraced because it made understandable the pervasive sense of shame I carried throughout my teens and most of my adult life.)

Today I’ve been pondering some of that. I feel as if I’m still basking in the wonderful aftermath of receiving the Sacrament of Confession. I am more at peace, and less defensive, about the fact that I am prone to wander and sin — and yet I am more grieved by that propensity than ever. It seems contradictory, but it isn’t. I realize how desperately I rely on my beautiful Savior…and more and more I realize that this doesn’t make me a uniquely flawed and terrible person, but just a human.

Besides, even if I once was all that terribly flawed and horrendously awfully sinful as I once believed, not even the faintest stain of that now remains. Yes, I still sin. Yes, I still have flaws and failings. But the new narrative — the truthful narrative — of my life is that God did not create some cosmic mistake when He formed me together in my mother’s womb. In fact, some of the very things that I thought were flaws and defects, or that others think are flaws and defects, might actually be the way He intended to make me all along. Thank God that He is still working on me and that, as He promised, He will bring that good work to completion.

That’s the narrative worth embracing.

Hiding from help

“Why do you get angry at any adult who really cares about you?” my sweet, kind, and bewildered friend confronted me when I was in high school.

“What? No, I don’t. I just can’t stand ultra-concerned types.” I put so much sneered emotion behind the words “ultra-concerned types” that one would have thought I was plagued by obnoxious, overly-zealous, heavy-handed, intruding busybodies trying to bulldoze over me and seize control of my life.

“But why get so angry when they care about you?” she asked again, mentioning some specific examples of kind, wonderful adults.

I brushed her off, muttering something about how I suffered at the hands of “ultra-concerned types” and their annoying ways. I rather angrily denied that I was angry, and then changed the subject.

It took me over three decades to find out the answer to my friend’s question.

Back then, and for those many years afterward, I was hiding a deep dark secret, one so deep and so dark that I could only cope by refusing to think about it, by pretending it away. That didn’t work well. As a teenager, I was filled with the constant, overwhelming sense that there was something very much wrong with me, but I had no idea what — and I never connected that sense with the hidden burden I carried. Fear, shame, and secrecy had become a way of life for me. So had a form of denial so profound that it was almost as if I’d created an alternative reality for myself.

I had to keep people at arm’s length. If anyone, especially an adult, got too close and actually looked into my eyes, they might know whatever it was I dared not face.

At the same time, my innermost being was desperately crying out for help, and my greatest desire was to be rescued…from what, I dared not think. The memories of some of the wonderful adults who managed to overcome my defenses long enough to plant seeds of hope in my bruised and battered, locked up heart, cause tears of gratitude as I write. There was, for example, the youth director from another church who spent a Friday night playing bumper pool with me, laughing with me, having fun with me, and treating me as an interesting person of value and importance. I don’t remember your name, my brother, and I never saw you again, but you were like a ministering angel to me that night.

Then there was Mr. Bottaro, my tenth grade English teacher. He told me, when I was attempting to argue with him about a paper I’d written, “Someday I’m going to break through your façade.” Façade? I fumed angrily. What on earth is he talking about? The nerve of him! The next year, even though I was no longer in his class, he would often stop me on campus and ask how I was doing. He never believed my polite responses or automatic answers. “No, really,” he would insist, his eyes trying to search mine for the truth. “Come up to my room and see me,” he would urge, no matter what I answered. I knew he saw…something.

Finally I decided to take him up on his offer. I would sit in front of him, let him look in my eyes, and tell him that there was something terribly, seriously wrong with me but I was too afraid to try to think about it. Surely he would be able to figure it out. That was my plan, anyway, to beg him to help me, when I arrived on campus early one morning. I was on my way to his classroom when another teacher stopped me with devastating news.

Mr. Bottaro was dead of a massive heart attack.

It took over 30 years for me to try again, to sit across from someone else and let him try to figure out what on earth was so terribly, horribly wrong with me. But, as desperate as I was for help, I didn’t make it easy for my therapist. I hadn’t just erected protective walls around my growing mountain of secrets — I’d planted prickly cacti outside the walls, dug a moat, and filled it with alligators. Then I stood in my watchtower, safely out of reach, and threw rocks at anyone who dared commit the heinous crime of caring in ways that made me uncomfortable or threatened my defenses. My therapist did not have an easy time gaining my trust, and overcoming my anger and fear.

Exposing our dark secrets to the light of day — it’s scary stuff, I tell you. Absolutely terrifying. I do not exaggerate when I say it came close to killing me. But hidden secrets can never be healed, and there is no freedom comparable to living in the light. There are burdens we were never meant to carry alone.

I’ve been on the receiving end of the prickliness when I ventured too close to someone who did not wish to be known, who feared what I might discover. I’ve experienced what it’s like when others lash out in fear and panic because a secret has been exposed. So now I know both sides, and I understand.

Until recent years, I had no idea what true freedom was. I was in survival mode, always feeling as if I were on the brink of chaos, barely holding things together. My life was a carefully erected house of cards that might fall down at any moment, and I couldn’t let anyone know. The fear of exposure — even exposure of some of my more trivial flaws and failings — was crippling. The worst is that this didn’t just effect me. I raised six beautiful, wonderful, amazing children in a climate polluted by my fear, isolation, and secrecy. By the grace of God, they are now much stronger and healthier than I could have ever hoped.

The enemy of our soul hates freedom. He hates the light. Stay in the dark! he urges us. Don’t let them see who you really are! Don’t even admit to yourself how desperate your situation is. Deny. Minimize. Hide. Cover up. Isolate. Live in secrecy. Get angry at anyone who refuses to play along. Break relationships with those who care for you and try to help. Live in fear!

That house of cards? Trust me, once you start walking in freedom and truth, you won’t ever miss what you were once so desperately protecting. Experiencing true healing is more than worth the temporary pain of bringing shameful, dark, or painful secrets out into the light.

Walk in the light. It’s absolutely beautiful out here!