I wish my symptoms could be measured

I like symptoms that can be independently measured, outside of my own testimony. I like blood pressure and pulse and even weight in our fatphobic culture. I like obvious damage in x-rays and MRIs. I like mammograms because they are looking for something others will verify as they review the scans. My thyroid levels, my blood sugar, and range of motion measurements are numbers that make sense.

Pain levels aren’t clear. Cognitive functioning is hard to quantify. You have to take my word for it when I talk about fatigue, about my body feeling heavy, about heat intolerance.

For a survivor of sexual assault, I’ve learned my word isn’t enough for some.

Why would my testimony be proof of health but not sufficient evidence of crimes? If I wait a while with symptoms, will I be asked why I didn’t report my concerns sooner?

Women aren’t believed, and I’m not talking about rape here. No, women are less likely to receive pain medication, more likely to wait longer for treatment, and more likely to be misdiagnosed with a mental health condition when they have physical symptoms than men under the same circumstances. (Side note: the research generally assumes a gender binary, so I’ll be using the men/women dichotomy here.) Even after major heart surgery, men were twice more likely to be offered opioid pain medications than women… even though women feel pain more acutely than men. This powerful essay describes the incredulity of a husband through his wife’s - in her own words - “trauma of not being seen” when she was ignored for hours in an emergency situation. When they have brain or renal tumors, women are more likely to have to go through more appointments before their diagnosis than men with the same tumors.

Among women, though, I am privileged because of whiteness; black women are more likely to have strokes and less likely to survive them than white women, and they’re more likely to be misdiagnosed for or die from breast cancer. Black women are more likely to die from cervical cancer or die following childbirth, the latter truth illustrated well in the story of Serena Williams who is only alive because she advocated for herself (and probably would have been ignored if she weren’t a well-known champion athlete).

Knowing what I know about women being (dis)believed, I want to measure my complaints with precision. That’s not always possible. I’m going into an appointment tomorrow (Monday) morning during which a CT scan will likely be ordered. But that unbelieved little girl within me worries that my word for my symptoms isn’t enough for the next test to be deemed necessary.

I know I’m a powerful self advocate. I know I can push for what I need. I know how to fight for myself and my health.

But I’m tired. I don’t want to have to fight. I don’t want to be mindful of every word so that my doctor understands the point, so that my symptoms will be taken seriously, so that I can get the care I need.

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I want my pain, my malaise, my intolerance to heat to be graphed like my cortisol levels can be. I want to be able to give an undeniable number for my fatigue. I want to be able to show my symptoms in a way that no one can minimize.

But it doesn’t work that way. I’m learning to trust my body, my word, my resilience. I can’t ask doctors to do that, after all, until I can.

I'm not better yet.

I’m not better yet, and I really wanted to be. 

(Well, as better as I get, for a woman with a handful of chronic health conditions.)

I want to be at the end of the story. I want happily ever after. I want to feel good.

But I want to be real more than anything, though, so I’m not going to bullshit you. I’m sick. I fought like hell to live as a kid, and now I’m doing the same.

My arms are too weak to push myself up from bed. Ten minutes in any heat makes me feel as hot and wiped out as a day at the beach. I’ve gained 65 pounds in the past couple years in ways that are symptomatic of a problem. My mind gets all tangled from time to time. I am exhausted all. the. time. My body feels like it weighs two tons whenever I try to stand up. My stamina is nonexistent.  

(Side note: here is what we are not going to do, though: we are not going to assume we know each other better than we do. Unless you’re my doctor, my bestie, or my husband, you don’t get to prescribe “have you tried…” or “maybe it’s…” That is not helpful. I have a top-notch team of medical professionals, and they are not you, and we are making progress, so no thanks.

Also, someday I’ll write a post about how exploitative it is to friendships for you to show up in DMs - especially when you’ve never DMed before - to sell me some miracle cure/shake/oil/program when you’ll financially benefit from my purchase.

Again, not helpful and so many assumptions.

Also, implies that your friend is not doing enough to be healthy.

And? I miss the friends some of you used to be before you wanted to cash in on my struggles. So, please, no.)

I can’t tell you how my last speaking engagement went, because I got hot and anxious and jumbled almost immediately. People who were in the room had never heard me before, so they had no clue that i was so disoriented the whole time, but that was the last straw for me. I took a four hour nap immediately after I spoke. I knew I needed help. Something wasn’t right.

That’s what health self-advocacy is all about, after all. It’s knowing your body and making it known to medical professionals. It’s not returning to doctors who don’t respect your self awareness or don’t treat you like an equal partner in your own wellbeing.

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For me, it’s extra scary. I have PTSD. Touching me is something earned, and doctors aren’t friends who’ve proven themselves to be safe. Yet to be healthy, I have to let these lab-coat-wearing folks touch me.

(Reminder: I am not seeking advice with this post. This is a good opportunity to show empathy to a person without trying to fix them.)

Sometimes self care - real genuine care for oneself - is no fun at all. I’m the mom of six, and I can absolutely tell you that caring for others isn’t always fun either. I remember caring for Zoe in Taiwan by force-feeding her with a syringe until we got to where we could access the medication she needed to eat without pain. That care was needed, but it was not fun.

Yet we too often talk about self care in terms of massages and bubble baths. Sure, it can be those things, but that’s the polished and privileged form of self care. Real care isn’t always pretty.

I don’t know what is coming next. I don’t know if I’ll be better like I hope. I’m not sure I remember what better even feels like.

I do know one thing, though: we often wait to share stories until they’re resolved, and this means we' don’t know how to live through the messy middles and we don’t know what to do when we’re invited into someone else’s. But we can learn. I’ve shared this before, but my husband - when words fail and nothing else seems right - will say, “empathy,” to me. Just the one word. Empathy.

It’s his way of saying, “I know this is a big deal, and there’s nothing I can do to fix it, but I’m here and I’m with you in it.” It’s his way of making sure I know I’m not alone. It’s his way of reflecting Christ to me.

I think we all can use more empathy, because more of us are in the “not yet” part of our stories than we’d like to admit.

So here's what we are going to do:

If you aren't sure what to say but you want to leave a comment, simply reply with the word empathy. I don't need fixing or pity or advice.

I need people.
I need empathy.
I need you.

None of us are meant to struggle alone, after all.

drowning doesn't look like drowning until it does

It’s been a weird few years.

Usually when white people say that nowadays, they’re talking about politics. They’re talking about their discovery of the inequities always known by those outside of majority culture. They’re talking about the process of now knowing after not knowing.

Sure, there’s been some of that for me too. That’s not what has made the past few years weird for me though having so many friends weather the weird because of public shifts has made me feel less alone as I did so with personal shifts.

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My personal shifts haven’t been completely private, so some of what I am about to share will be old news while some might surprise. I’m going to tell it through the story of my knees, but you’ll find that this is much more than that story. It’s much more than my story, I’m realizing too. It’s a story of how drowning doesn’t look like drowning until it does.

My knees looked fine, as far as knees go. I’m not sure they’re anyone’s favorite body part. The function is helpful, but otherwise, they’re just there, waiting to be skinned or to fail.

When my knees first failed, I was at an age at which they still wore childhood scabs. It wasn’t supposed to be like that, but it was, all at the same time. By my father and my older brother, my body had not been my own for a long time, maybe ever, so nothing felt incongruous to me about my kneecaps being forcibly dislocated as my legs were spread against my will.

I was 11.

I didn’t tell anyone until I was 15, because I didn’t know how to say what happened without feeling like I was telling on myself. I knew what happened was wrong, but I didn’t know I wasn’t wrong along with it. I didn’t know how to tell the story of my knees without confessing something primally disorienting. Daddies are meant to protect their young, but mine should have been a protector by trade too. He wore a badge, a uniform, and an officer’s rank. Both our large metropolitan county’s sheriff’s office and our country’s Green Berets in Vietnam knew him well.

So did my body.

At 15, my kneecaps finally dislocated in a public place, in the ordinary act of climbing in a van. Other people saw. They asked if it had ever happened before, and I said no. I still didn’t know how to say yes. I still didn’t know saying yes wouldn’t be the same as saying I was a whore. I still didn’t know if I could tell the truth that incestual abuse had evolved into other men being invited into our home and my body without my consent, because I still didn’t know that I wasn’t complicit in my trafficking. I still didn’t know the truth that none of it was my fault. My knees knew, though, and they told some of the story before my words could.

A condescending doctor dismissed me as my mother spoke over me, telling him this was a one-time incident when she and I both knew it wasn’t. I went to physical therapy. I learned how to strengthen muscles to compensate for my injuries, which seemed about right. I had been compensating for injuries in secret my whole life, with my earliest memory being one of terror as I ran from physical danger in the form of a family member. I don’t remember what happened after I got caught, and I think that’s probably merciful.

I started to tell parts of the story, bit by bit. I earned a scholarship with an essay I had to recant once my mom found out I had written about the abuse. While the committee couldn’t prove my original story was the truth without my cooperation, they still awarded me the honor. I imagine they thought they were helping, hoping to be guardian angels for a young woman in need of a legion; and they were.

In high school, I told my story by extreme perfectionism, not just trying to be perfect but needing to be to earn love and belonging. (I didn’t know those were my birthright.) In college, I told my story with binge drinking and bulimia. Going back to age 11, I told my story with thin lines carved into my forearms and upper thighs.

It was socially acceptable to be a perfectionist, a problem drinker, a sickly thin girl, and even a cutter. Being a teenager who had a decade of sexual and physical and emotional trauma behind her, while walking on knees that told a story that my lips couldn’t? That wasn’t anything anyone wanted to hear. It was socially acceptable to talk about the horrors of sex trafficking but I noticed it was not socially acceptable to be a survivor of it. I knew no one who told that story.

If they did tell it, it never included happy endings. It never included love. I never expected mine to include that either.

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I didn’t mean to fall in love. Lee was an accident. If I had seen him coming, I would have tried to protect myself by pushing him away.

Because he loved me, I started to believe that maybe I had never been wrong after all. I started telling more pieces of my story. I started to see doctors who could hear parts of my story and treat injuries that should have been treated years before, injuries that shouldn’t have ever happened to need to be treated.

I knew how to do, so I kept doing. I didn’t know how to be. I didn’t know how to breathe. I didn’t know how to rest. I didn’t know how to care for a body that had only known neglect before him.

I don’t talk about my love story with Lee often, because I like to play a cynic but can’t keep that up as I acknowledge how much of a fairy tale I entered when I met him. He isn’t perfect. I’m not perfect. Life isn’t perfect.

But somehow that doesn’t matter with him. It never has. But I have always mattered to him, in a way I never knew I could matter before he happened to me.

He happened to me eighteen years and four months ago. Our fairy tale has looked picturesque on the outside, as our stories weaved together into the lives of our children through birth and adoption in ways we hadn’t expected. People fell in love with the idea of our family, and they couldn’t see my gasps for air because they had placed me on a pedestal too far away to check my vitals. Oddly enough, I was better than ever before, but being better meant I could finally see the cracks, not that they were gone.

Even as I saw therapists and specialists and had a few corrective surgeries early in our marriage, I was still drowning on dry land. My knees had looked mostly fine. I knew how to compensate, still, and I used that to downplay the increasing erosion of joint and spine function, as the years of violence stopped hiding below the surface, as my history met my present, as my body revealed it had been keeping score all along.

That’s the story of unbecoming and becoming, not linearly but cyclically, that ushered me into the weirdness of these past few years. That’s how I ended up having seven major surgeries in less than two years, the last one in September. That’s how I ended up here, in such a different space than I used to be. My personal weirdness happened to coincide with America’s political farce of fact and fiction, and it was nice to collide with my internal reckoning while the rest of the world watched - and continues to watch – our country’s collective external one. That’s how I felt less alone.

Yes, politics plays a role in my unraveling from chaos into something still taking form today but not quite there yet. For me, it hasn’t been the catalyst it has for so many others. Sure, I’ve written about the impact of this administration, but for me, that’s been the side story not the central one.

Sometimes the sideshow distracts from the larger story. It has for many who have been following along with mine. And it reminds me of something I learned in my lifeguard training, not long after Lee and I met.

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Drowning doesn’t look like drowning until it does. The splashing and struggling isn’t the danger. No, I blew my whistle for that to prevent injury, not because it was already there. Drowning - real drowning - looks like almost nothing at all. It isn’t splashy. It is a slow slipping under, a gradual burial that isn’t obvious until it’s too late unless you know what to look for.

I’ve been un-drowning for a few years now, and breathing deeply without gulping down waves of misplaced blame, shame, and guilt still feels foreign. My knees are as fixed as they can be, but they had to be literally taken apart and reassembled through four surgeries. That part of the story, the surgeries and recoveries, has been visible. The part of the story in which my soul has done the same has been harder to see, mainly because it was never meant to be seen until now. It was reserved apart from those who aren’t intricately woven into my private world, at least not while the story’s words were still being intimately crafted from wounds into scars.

Some of you met me when I was drowning but looking dry. All the transition that’s been happening in public and private has been cohesive in my larger narrative but probably confusing from the outside. Even questions like, “wait, another surgery? what in the world?” are ones that have been completely logical while also being heavier questions than they seem on the surface.

The heaviness of them, the years of unpacked griefcases underwater, were my iceberg, while the world only saw the exposed tip. As I’ve thawed and began un-drowning, the unpacking has made me seem different from before.

And I am.

I used to think that was wrong. I valued consistency in viewpoints as if that were a sign of integrity. I’ve learned now that real integrity includes room for growth and change and learning and unpacking, of being somehow the same and yet completely different all at once.

I know, though our stories aren’t identical, my words resonate with you. I’m not the only one experiencing this state of sameness to and difference from the person I once was. I know, too, that many others are drowning, just like I was, but it isn’t looking like drowning, not yet. Because drowning never looks like it’s drowning until it does.

I am not alone. You are not alone. Those who are drowning imperceptibly aren’t alone either. We were each made not only to be human but also to be bound to one another in our shared humanity.

The world seems like it’s at least half ruined, but it felt that way when I was 11 too. Some of the ruin is still ruin, yes, but some of it has been redeemed into something like hope. If you’re disoriented by all the differences or drowning in them, I’m here to let you know that the beautiful and horrible reality of life is that it always changes.

That change is inescapable, but the drowning doesn’t have to be. We can figure out how to swim, not on our own but by learning from each other. It’s been a weird few years, yes, but our griefcases don’t have to anchor us in sameness.

Drowning doesn’t look like drowning until it does, after all, but drowning doesn’t have to be inevitable.

Yesterday would have marked 15 years of being sober.

Yesterday would have been 15 years sober for me. It is, and it isn’t, all at once.

I’m drinking again. And? I’m entirely comfortable with that. The only discomfort I have is about telling you.

After all, I’ve been open about my alcohol abuse in the past, having drank heavily from age 11 to 21. I wrote about it for Teen Vogue. Saying I was an alcoholic hasn’t been anonymous for me for years.

I’m concerned some of you will worry. I am okay, truly. I promise.

I’m concerned some of you will feel like I’m extending a license to break your hard-earned sobriety.

I.

AM.

NOT.

Not even a little bit. My choice, made with the full support of my husband, my therapist, and most friends, and the begrudging support of my protective best friend, is my choice. It’s about me and not you.

It’s about me and not you.

I’m concerned some of you will be disappointed in me. If you are, that’s okay. That’s a valid response, as are all other feelings you might have about this. Feel what you feel.

I’m concerned that many of you will be confused. Why risk it? Is this wise? Is it safe? What changed? Am I deceiving myself?

Those questions deserve a hearing, because I choose to write in the public sphere. Not everything needs to be public. But when I’ve shared openly about not drinking, it makes logical sense to share openly about drinking again.

That’s why I’m writing this post. Our first night in Ireland, Lee and I ended up at a pub. A delightful 80s and 90s cover band was playing. We had a couple drinks. After getting the first ones, I snapped the picture below. I could have Instagrammed it., but I knew this was too delicate to just throw at you on social media. I want to take care with what and how I communicate the shift.

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So, when did this happen?

In December,Lee and I decided to start an experiment we’d been considering for a while. To see how alcohol impacted me now, at 36 instead of 21, we began to share a glass of wine together after bedtime, no more than once a week.

We didn’t know how it would play out. Possibilities ranged from triggering trauma responses and stirring up emotions from when I abused alcohol to numb the pain of abuse, to risking a return to addictive behaviors and risking also that my explanation would be perceived as a free pass to drink again for those who need to be sober.

Please, don’t. That’s not a permission slip I’m signing for anyone but myself.

Before I took my first sip since March 28, 2004, I had been discussing the idea with my medical and mental health professionals, Lee, and several dear friends who have proven in the past that they are willing to risk out relationship if needed to speak the hard and necessary truth to me. The first of these conversations was in early 2017. I knew it wasn’t the right time then, but I was beginning to realize that it might be, eventually.

I did not do this lightly.

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So, why do it?

Because I wanted to. I’ve only learned in recent years that my wants and desires matter. I like alcohol, and I wanted to have the occasional freedom to have a drink in the context of community with others. This wouldn’t be a good enough reason alone, though. While it’s always important to be in touch with what we want, it’s not healthy to pursue every desire.

Because I could do so safely. For me, PTSD is my primary diagnosis. Substance abuse was a symptom of the problem, not the problem itself. Of course, many people with PTSD are addicted to alcohol or drugs (or busy-ness or Twitter or…) or in recovery from those addictions. But as I’ve been intensely processing my childhood trauma, peeling back layer after layer, some of my secondary expressions of PTSD have gotten quieter or gone silent. I couldn’t have safely taken another drink without doing the years of therapy that preceded that first sip in more than a decade.

Because I’m not sure it was really accurate to have said I was an alcoholic. I drank to numb. I drank to forget. I binge drank. I had a host of habits consistent with addiction. I will, without reservation, acknowledge that substance abuse certainly fit for me during the decade I drank regularly from age 11 to 21. But I stopped drinking pretty easily, I never once relapsed, and - most crucial to the story - I decided sobriety was my only option while a member of a fundamentalist church context where any alcohol consumption was vilified. I am confident I struggled with substance abuse then. I’m not confident it was accurate to call it addiction.

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Are you sure?

I’m sure enough. I’m as sure as I can be. I’m as sure as I was when I decided not to drink 15 years ago.

My skepticism started with my first AA meeting. I never went to a meeting until I was 12 years sober. I know AA has been a pivotal part of some friends’ recovery, so my expectations were high.

I wrote a post titled more than an alcoholic the day before that first meeting. And then I went.

I loved the truth telling of the people there.

I questioned the truth telling of the Big Book.

The claims in the Book - which serves as the bible for AA - were bold. The theology veered toward Calvinistic total depravity at times, and it stressed how we are wrong so much more than how we are good. The history was mostly accurate. The science, though? It struck me as suspect.

It was then - in 2016 - that I began to research the roots of alcohol abuse treatment in the US. I found, not surprisingly, that AA has strongly influenced how we discuss and treat alcoholism. When I told a doctor that I was newly sober in 2004, she quickly said, “you know, right, that you can never drink again because you’ve struggled with alcohol like this and have a family history of alcoholism?” I nodded, having never considered any other approach.

I’m glad I didn’t consider any other approach at the time. I needed to make a clean break. I needed to learn in action that life doesn’t have to be saturated in liquor. I believe strongly that this is the ideal long-term approach for many, and I believe strongly that it was the ideal path for me at the time.

I don’t doubt the benefit of the Big Book or AA program in reaching a needed sobriety for many. I don’t want to lay out an argument against that. Some people will go to the extreme to dismiss the program altogether, but I’m not an enemy of Bill’s. I also think it’s important to acknowledge that every AA group is different.

That said, I look at how we treat almost everything else, with treatments tailored to the individual (as this Harvard paper suggests for alcohol abuse), and I consider this excerpt from the Big Book to be utter bullshit:

Rarely have we seen a person fail who has thoroughly followed our path. Those who do not recover are people who cannot or will not completely give themselves to this simple program, usually men and women who are constitutionally incapable of being honest with themselves. There are such unfortunates. They are not at fault; they seem to have been born that way. They are naturally incapable of grasping and developing a manner of living which demands rigorous honesty. Their chances are less than average. There are those, too, who suffer from grave emotional and mental disorders, but many of them do recover if they have the capacity to be honest.

Honestly, WTF?

I might give the shaming language a pass if that passage rang true, but it doesn’t. The books Sober Truth in whole and Critical Thinking, Science, and Pseudoscience in parts discuss this in detail. (A review of Sober Truth in The Atlantic can be found here.)

Sure, AA can work, but so can other approaches. For me, intensive therapy - which I recognize as a privilege afforded by insurance and income - has been the best approach, both early in my sobriety and now. (One reason AA is so popular is because it’s free, it’s available, and it’s a community, which I acknowledge is not true for therapy.)

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so what now?

Am I giving myself a forever permission slip to drink? No.

When I started drinking, I was little. I got sober when I was 21. I stand by that decision. It was right for me then. When I quit, I needed to do so, because - as I wrote a few years ago on this blog - I had reached a point at which I was drinking excessively every single time I drank. I also did so because of family history with alcohol abuse and because my fundamentalist church was anti-alcohol for anyone.

It wasn’t a bad choice to stop.

This new-ish decision isn’t a bad choice either. I’m a different and healthier person now at 36 than I was at 21. (Hopefully, that’s true for everyone.)

As for me, I’m drinking again. As for you, I have no advice beyond encouraging you to make informed choices within safe community. (That means it’s not wise to drink if you lack safe community or the accountability provided within it if you are willing to be deeply honest, as is necessary with any real accountability.)

I had a problem with alcohol 15 years ago, but as my faith has shifted in recent years, I’ve reevaluated everything. I’ve deconstructed and reconstructed my beliefs about God, using the Bible holistically rather than leaning on someone else’s interpretation and prescription for what I ought to believe. (Far too often, the false Jesus peddled by those who have self-appointed themselves as guards of all things “biblical” is one who is misogynistic, ableist, and somehow blond and blue-eyed, which makes sense only because he is entrenched in rich white supremacist ethics. Thank God that’s not the Jesus of the Bible and of history.) I expect to honestly wrestle with faith for the rest of my life because I consider that fundamental to any worthwhile faith journey.

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so is your Insta gonna be boozy now?

I won’t post much about alcohol beyond this essay, unless there’s a noteworthy update to offer. I know how challenging and disorienting the overabundance of alcohol-saturated posts could be when I wasn’t drinking. I felt left out, like I didn’t belong, far too often. I don’t want to create that feeling for anyone else.

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Yesterday would have marked 15 years sober for me. In a sense, it doesn’t - no 15 year AA chip this year! - but in a sense, it does. In the fullest sense of what it means to live soberly - to be steady, to not habitually or heavily drink alcohol, to have a clear head, to give pause to myself and thought to anything related to numbing emotions, including but not limited to alcohol - I still consider yesterday a soberversary of sorts.

When my best friend - for whom this is not breaking news - texted me yesterday to ask, “so, are you still celebrating your sobriety anniversary?”, the answer was an easy yes. My relationship with alcohol changed significantly 15 years ago. It remains forever changed, even as a healthy choice for me (for now) might include a glass of Riesling or a whiskey sour from time to time.

Maybe it will stay this way.

Maybe it won’t.

But this is where I am today.

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(All pictures in this post are from our first 24 hours in Ireland)

Infanticide is already illegal, but you wouldn’t know that from last week’s news.

Carrie Ann Lucas was killed by our failed healthcare system a week ago.

I know that lede sounds extreme or exaggerated, but it isn’t. She wasn’t an infant - I will get to infanticide in a moment - but she was a beloved activist, adoptive mother, ordained minister, and disabled woman. She was 47. Her death was not premeditated but it was entirely preventable.

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The picture above came from her Facebook page. In a post there, this explanation is offered for her death:

Carrie Ann Lucas, a disability rights attorney who pioneered representation for parents with disabilities, died after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death. 

A follow-up story by Forbes and an obituary in the Denver Post explore her life and legacy further, but the sad reality is that Carrie Ann didn’t have to die last week. She got a cold in January of last year. That led to a trach and lung infection. She was prescribed a specific inhaled antibiotic expected to be effective for treating the infection while avoiding complications due to her muscular dystrophy. Her insurance company refused to pay for it, covering a less effective antibiotic instead, knowing that she has a history of drug allergies. She had a bad reaction to the alternate medication, spent the past year in and out of the hospital, and died of septic shock a week ago.

Carrie Ann spoke out against physician assisted suicide, declaring that her disability did not make her unworthy of life. She aligned with the pro-life movement on that. While I am not familiar with her stance on abortion, I can confidently say that she would have opposed any concept of a child being born alive and then killed by doctors.

Last week, the Senate voted down a procedural motion to move forward with debate on the Born-Alive Abortion Survivors Protection Act, introduced by Ben Sasse (R-NE). Sasse is best known, along with Jeff Flake (R-AZ), for speaking boldly against Trump’s poor decisions but ultimately voting in favor of them. Sasse argued that babies who survive an abortion be treated rather than killed.

Carrie Ann would have agreed with that. I agree with that. In fact, Congress agreed with that when I was still in college, passing the Born-Alive Infants Protection Act of 2002. That act protects the life of an baby born alive, as defined:

the term `born alive', with respect to a member of the species homo sapiens, means the complete expulsion or extraction from his or her mother of that member, at any stage of development, who after such expulsion or extraction breathes or has a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, regardless of whether the umbilical cord has been cut, and regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion

As made clear in the excerpt above, born alive includes babies who have survived abortions.

The legislation introduced by Sasse was political theater. The substance of it was already made law seventeen years ago. Why introduce a redundant bill then?

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First, redundant legislation is nothing new. To put their position on the record, members of Congress have sponsored or introduced would-be laws that were already passed, on a range of issues from gun control to airline regulations. Not only does it make their position clear, but also it makes the position clear of anyone who opposes the measure.

Why does this matter? Well, I’m not sure if you’ve heard, but there’s an election in 2020. It’s kind of a big deal. When campaigning, it’s a lot easier to say, “my opponent wants to kill babies,” if there’s a recorded vote you can cite. Voting against something called the Born-Alive Abortion Survivors Protection Act sounds pretty damning if you don’t know what it is.

Except the Democrats in the Senate - all but three - didn’t vote in favor of killing babies.

The vote last week was procedural. Procedural votes are part of the legislative process, determining if a proposal gets voted up or down. Given the way I saw conservatives spin the issue last week, though, you might have understood the yes votes to be in favor of babies’ lives (and against infanticide) and the no votes to be against babies’ lives (and for infanticide). That’s the way it will be told by Republicans during the 2020 election cycle.

But it’s not true.

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A no on a procedural vote can, of course, mean the legislator opposes the intent or content of the proposal. But it can also mean that they don’t consider the bill worthy of congressional attention because another act - in this case, the Born-Alive Infants Protection Act of 2002 - already exists to do what the proposed legislation would do.

Likewise, a yes on a procedural vote doesn’t mean the legislator supports the intent or content of the proposal. In the dramatic healthcare vote in July 2017, McCain voted no on Obamacare repeal, casting the deciding vote. The reason the moment was so uncertain, though, was that he voted yes on the procedural vote. He considered it worthy of discussion and consideration but not of passing. That’s one notable example of a procedural vote being just that, procedure, and nothing else.

If it could have electoral repercussions, though, why did only three Democrats vote for it? Wouldn’t it have been easier to let it sail through if it wouldn’t change anything?

The problem here is that the proposed Born-Alive Abortion Survivors Protection Act was unclear. For babies born alive after an abortion attempt - babies already protected under law by the Born-Alive Infants Protection Act of 2002 - doctors would have been required to offer identical care to the survivor of a failed abortion as they would to “any other child born alive at the same gestational age,” under the measure discussed last week.

At first glance, that sounds good, but it gets tricky because this provision could be interpreted two different ways. The first way is that the full range of interventions - from comfort care (that is, keeping a baby with a fatal condition comfortable without other medical intervention) to heroic attempts to sustain life no matter what. The second way is that if any other child born at that age without any complications would survive, then doctors must take all possible action for the abortion-surviving baby to survive, even if comfort care is in the best interests of the child and family.

I’ve seen well-reasoned op-eds arguing each interpretation in the past week. The interpretations generally fall along party lines, with Republicans arguing the first and Democrats the second. Whenever any issue is this strictly partisan, the facts are usually somewhere in the middle of the two stances.

In this case, neither interpretation is a given. But let’s review the branches of government real fast:

The legislative branch makes laws.

The executive branch enforces laws.

The judicial branch interpets laws.

The legislative branch should craft and pass clear laws that take all foreseeable outcomes into mind. But none of us can play out every move to the ultimate end, right? That’s where the judicial branch shows up. They don’t make the laws; they interpret them.

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Right now, many courts are shifting to be more aligned with Republicans, given Trump’s nominations. I wish nothing partisan factored into judicial decisions, but we all know that’s not true. That’s why you’ll see Republicans at the state and federal level pushing laws that wouldn’t have made it through the courts before but that they hope will now. Even if the courts functioned perfectly, though, the ideal situation is one in which the law has such indisputable clarity that no judicial interpretation is needed.

In other words, legislators aren’t doing their jobs when they pass murky material into law (or, in this case, into the process of debating the actual content, as this was a procedural vote). The judicial branch is needed, but it’s meant for those issues that aren’t caught and addressed in the actual writing of the law itself.

This whole debate has turned into a shouting match about whether or not late-term abortions exist. I could weigh in on that (basically the medical definition of late-term is 40-42 weeks pregnant, so it’s not medically accurate language), but the gist is that I see pro-life friends quoting one OB saying that third trimester abortions are never needed while I watch pro-choice friends and doctors citing many more sources to say that they sometimes are. These are rare cases, yes, but given that third trimester abortions make up one percent or less of all abortions, it makes sense that these would be pregnancies that are the exception rather than the rule.

The measure voted down last week, though, wasn’t really about third trimester abortions; it was about what would happen afterward. I do consider it worthy to discuss the wisdom and act of abortion throughout all maternal stages, but this piece isn’t about that and neither was the Born-Alive Abortion Survivors Protection Act.

The other reason I consider the scenario to be political theater is simple: Mitch McConnell knew they didn’t have the votes. He knew it wasn’t going to pass. He knew no vote was needed. But he sought one anyway, so the record could show who did and didn’t vote for it.

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Not only do I suspect those motives, but McConnell acknowledged them in an op-ed he wrote about the act. In his own words,

The American people deserve to know whether their senators stand with vulnerable children struggling for life.

The vote last week wasn’t about last week, and it wasn’t really about vulnerable children, who were already protected under the 2002 legislation.

No, the vote last week was about 2020.

Infanticide was already illegal. Nothing Sasse proposed, even if it had passed, would have offered any needed or lacking protections.

In the midst of Cohen’s testimony and Mueller’s continued process and the seemingly unanswerable questions about what depths of corruption must be reached before change comes, the one reliable base for Trump - white evangelical Christians, with 68% holding a favorable view of Trump, including 28% with a very favorable view - needed a reminder of why they made a deal with the devil and, in doing so, damaged their own credibility for loving neighbors already born. This redundant bill was presented as necessary and a procedural vote portrayed as positional. It worked. “But baby killing…” has been the chorus in response to anything negative about Trump this week from a certain demographic.

I used to join them. I used to champion the de-legalization and even criminalization of abortion as the best way to save lives. I would have been the first to pull a “butwhatabout abortion?” with a sweet yet patronizing smile, as if I immediately had claimed higher ground.

I did and still do consider a separate life to have begun as soon as unique DNA is created. For me, that moment - conception - is when a new person is formed. I did and still do consider abortion to be ending a life.

So why have my political stances changed? It’s not what you think. It’s not the oft-claimed view of pro-life for me but pro-choice for thee.

I used to roll my eyes hard when Hillary - in 2008 - and others touted that they wanted abortion to be safe, legal, and rare. Not safe for the baby, I would mutter to myself. But now I find myself in agreement, and the death of Carrie Ann Lucas illustrates why.

Medical professionals rather than elected politicians should be the ones who offer guidance when a women is making her choice. Doctors are best equipped to make the best decisions for the person they are treating, particularly in emergency situations and especially in outlier cases. The problem is that typical cases are generally the ones used to encode insurance policy and abortion law. For patients, like Carrie Ann, doctors need to be able to treat the patient in front of them.

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When I think of rare instances in pregnancy when hard decisions must be made, I think of my friend Rebecca. She’s a sonographer at a high-risk OB clinic. She scanned her own body through three pregnancies. For two of those pregnancies, she discovered and diagnosed fatal conditions. Because she had access to equipment and knowledge in understanding the black and white images that make no sense to me, her babies - Cora and Layla - received diagnoses incompatible with life far earlier in her pregnancy than other babies would. She had options far earlier in her pregnancy than most mothers have.

And? She chose to carry both Cora and Layla as long as she could. They both were stillborn, one at 29.5 weeks and the other at 36 weeks. Some pro-life folks have tried to tell her story as a model of valuing life, but Rebecca isn’t having that. She wrote:

I chose life for two babies, knowing they would die. I do not believe that should be a choice women are forced into making.

Two of Rebecca’s three pregnancies ended with a small white casket holding a much loved baby girl. I’ve watched her navigate the grief and pain and depression of the aftermath. I hear pro-life folks talk about women grieving after having abortions, but choosing to carry a baby to term who you know will die is unimaginable for most of us.

Sometimes it’s not the baby whose life is in question, though.

When I was pregnant with Robbie, my health was a hot mess. I had raging and untreated PTSD from childhood trauma I tried to hide away in hopes that it would go away. I had been diagnosed with a thyroid disorder that was barely under control when I got pregnant. A week after receiving my diagnosis of rheumatoid arthritis, I peed on a stick and watched two lines - a positive result - slowly show up. To manage my symptoms and avoid more bone erosion in my joints, I was on high doses of prednisone for the entire pregnancy.

That was fun.

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Then when I was about 30 weeks pregnant, the front of my shin began to swell, redden, and burn up. I have pictures of it somewhere, but you definitely wouldn’t want to see them. (I lived through it, and I hope I never find the images. It was that bad.) My kind and compassionate doctor explained to me, before opening, draining, and packing the infection with gauze, that it would hurt a lot because lidocaine often isn’t as effective when you’re expecting. I remember her saying something about the increased blood volume during pregnancy decreasing the efficacy, but all that is vague recollection. The sharply focused memories came immediately after, as one doctor, one physician’s assistant, and two nurses worked on my leg with sharp instruments.

When they took a swab of the wound to test which kind of bacteria was present, we all expected it to be a formality. We’d wait on the results. I would start a broad spectrum antibiotic safe for us during pregnancy.

I know that was a Friday. Early the next week, maybe Monday or Tuesday, I got a call with results. My doctor tried to sound reassuring as she told me the infection was a highly resistant strain of MRSA, but her voice cracked as she explained they didn’t have a plan yet. She had to confer with other specialists to determine if there was an antibiotic that would be safe for both me and Robbie, and she tried to keep her voice level as she explained that we had to prioritize my health.

She didn’t add “if we have to choose” to the end of that sentence, but the words hung unsaid between us nonetheless.

I had symptoms of the infection being in my bloodstream at that point. Given the positioning so close to my tibia, bone infection was a major risk too. As I started the new antibiotic, one that wasn’t ideal but they hoped would work, I was given strict instructions to come directly to the hospital if we saw any signs of sepsis. If I became septic, I could destabilize quickly, making delivery via vaginal birth or c-section medically dangerous for me but full treatment for the infection dangerous for Robbie.

I’d seen storylines like this on medical dramas, and they seemed much tidier there. I loved my baby. My pain levels were terrifyingly high. Jocie was turning two that weekend. Lee and I had been married only three and a half years. I was only 26. I hated the range of bad choices in front of me.

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Thankfully, that antibiotic - the one that wasn’t ideal - worked. I got better. Robbie was fine. I delivered a few months later.

I know the medical rules set by insurance bureaucrats and untrained politicians didn’t work for Carrie Ann. I know I would have been the exception to the rule in treatment if I had become septic. I know I have been the exception to the rules in so many other medical situations.

(After all, you don’t end up as a 36-year-old woman with a spinal fusion and spinal cord stimulator if you check all the boxes for being a paradigm of health.)

Roe v. Wade allows for abortions for the health of the mother. Some cases are clear. Others aren’t.

I’ve heard pro-life friends argue that the health exception is too broad. As someone who has fought hard for my health, I now take regular medications to maintain it. If I became pregnant again, then we would have to make some painful decisions. We would also have to research inpatient psych programs that are equipped for pregnant patients, because coming off some meds could destabilize my mental health.

I’ve lost enough friends to suicide or self-medicating addiction to know that mental illness can absolutely be terminal. No lawmaker should have the authority to require a woman with potentially fatal depression to continue her pregnancy if it isn’t safe for her. I know I’ll get comments calling me a baby killer (comments on abortion blogs are so fun, y’all) but any other stance results in dead mothers and dead babies.

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Death isn’t fun to talk about, but even in cases in which one adult kills another, it isn’t always murder. Sometimes it’s deemed an accident. Sometimes it’s found to be justifiable. Sometimes it’s considered self-defense.

How, then, can we not view abortion in that way as well? Some are acts of self defense, lived out by women who deserve compassion and empathy rather than judgment and condemnation.

Some of you disagree. That’s okay. We don’t have to agree, but we do share some common ground.

Your argument says as long as abortion is legal, babies will die. My argument says if legislation becomes what the pro-life movement seeks, women will die,

We aren’t that different, you and me.

This reminds me of the decision moment in Bird Box, when Sandra Bullock’s character is talking out loud about which child will look (and die). Our imperfect messy world doesn’t let us opt out of death. I’ve told God my thoughts about that, sometimes with prayers that would require an explicit label if recorded, but I haven’t found an option for life, only and always, on this side of heaven.

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Will all babies live if your laws pass? No. Abortion will still happen (as will miscarriages and other fatal circumstances). The women with the most resources available will still have access to all options in healthcare while women with the least medical access will continue to struggle disproportionately. Restrictive abortion laws often backfire. I know you don’t agree, but I am convinced by facts that your path leads to more abortions than mine.

Will all women live if laws go my way? No. Here’s the thing: Pregnancy can be and is both a natural process and a medical complexity rife with risk. Pregnancy literally kills women every day, here in the USA.

I’m not here to sway you. I’m merely weary of the same shoddy arguments being recycled and lobbed at each other. I think in all our fighting, we aren’t hearing one another any more. This post is simply my way to say, here’s what I think. Take all the time and space you need to consider it.

Your focus is on the risk to the baby. Mine is too. It’s also on the risk to the mother and the right for women and their doctors to make better decisions than legislators.

I believe this about more than abortion, though. Carrie Ann Lucas is dead. She didn’t have to be. But a healthcare system that limited her choices and rejected the originally prescribed antibiotic as unnecessary killed her.

This is why I can no longer support any legislation limiting access to healthcare. Hard rules kill.

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Please, try to understand that many of us who oppose so-called pro-life measures are as grieved by death as you are. We don’t all celebrate abortion, even if we support the legality of it. Plenty of us are striving for lower abortion rates.

We see different paths to that than most pro-life folks do, though. We tend to address the demand for abortion by policies focused on education, childcare, transportation, domestic violence, universal healthcare, access to birth control (including to teens along with comprehensive sex education), pay equality, and other supports. Many of us are celebrating the significant decline in abortion rates throughout Obama’s presidency with the trend continuing since then. Given the push for more restrictive abortion laws, it might surprise you to know that abortion rates are currently at the lowest recorded level ever in the US.

Increased use of birth control is the primary driver of the declines, which can largely be attributed to the Affordable Care Act’s provisions for birth control coverage and to Planned Parenthood which arguably prevents more abortions by providing birth control than it performs.

One last question must be explored when discussing Carrie Ann’s life and legacy: What about abortions performed because of disability? Both she and I adopted disabled children. But you might be surprised by what research shows with regard to abortion and disability.

It’s not okay with me that unborn babies diagnosed with Down syndrome are nearly twice as likely to be aborted as those without such a diagnosis. From the most recent comprehensive research review on the topic, however, “evidence also suggests that termination rates have decreased in recent years, which may reflect progress in medical management for individuals with Down syndrome and advances in educational, social, and financial support for their families.” He elaborated in an interview with The Atlantic,

Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.

In other words, it isn’t laws or court rulings that are decreasing abortion rates for children with prenatally diagnosed disabilities. It’s policies and programs available – from medical care to education to social supports and more – that affirm their lives after they are born. When we show that there are places in our country in which people with disabilities are welcome and loved, expectant parents feel more confident in choosing life instead of abortion when faced with a diagnosis for their unborn child.

We might not see eye to eye. That’s okay. But we aren’t enemies. We are both loved.

I’m not evil. You aren’t either. I don’t hate babies. You don’t hate women. Reductive reasoning and straw man arguments help no one, including women and babies.

Choosing life can look like a lot of different things.

I choose my life, because it matters.

I choose the lives of my children, because they matter.

I choose the lives of all children, because there is no such thing as other people’s children.

I choose your life too, whether you agree with me or not, because you matter.

I choose to support policies that reduce abortion rates rather than ones that try (unsuccessfully) to restrict them, because unborn children matter.

We aren’t that different, you and me. And we aren’t that different from Carrie Ann Lucas either, except we’re alive and - due to inflexible policies limiting the care her doctor wanted for her - she’s not.

I want to see abortion rates continue to drop, including for babies with prenatal but survivable disability diagnoses. That’s why I don’t agree with pro-life legislative attempts. You could say that I’m arguing for infanticide here, but that wouldn’t be accurate. It isn’t true, either, to say that Democrats voted for infanticide this past week.

But I’m sure it will be said plenty during the 2020 election cycle.