Tag Archives: iatrophobia

communication, condescending twatbags, healthcare, mental health

My personal triggers from Amy Silverstein’s heart transplant saga…

Good morning, people. It’s about 10:00 AM, and I’ve already been kind of busy. My day started at about 5:00 AM, which is when I usually wake up nowadays. I can’t believe there was a time when I could sleep until noon. That sure isn’t the case today!

I got up to do my usual morning routine, then did laundry, to include washing the sheets. I have a love/hate relationship with washing the sheets. I love how fresh sheets feel, but I hate the process of washing them and putting them on the bed. I never got the hang of making hospital corners. Bill is home today and could help; he is an expert at hospital corners! But he’s teleworking, because he was kind enough to take Noyzi to the vet for a dental. I didn’t want to bother him. He did come up and help me put the pillow cases on, which of course is the easiest part of that chore. I decided not to do the duvet covers today, because that’s the most annoying task related to washing the bedding. I’m just not in the mood to fool with it today.

After that was done, I moved more of my massive music collection to the new computer. I got through the Ks, although it sure wasn’t easy. Went from Keb’ Mo’ to Laura Branigan. That took a couple of frustrating hours. Then I forced myself to stop, so I could write a blog post. When I did that, I realized I had a pretty good case of writer’s block, and nothing was urging me to write today. Too bad I don’t have that feeling more often, since I often feel like my blog posts cause a lot of avoidable problems… like strained family relations and unpleasant interactions with strangers. But then I realize that I have my supporters, too. Yesterday, one of them, regular reader “dle”, left me a comment on my review of Amy Silverstein’s book, My Glory Was I Had Such Friends.

In my brief comment exchange with dle, I mentioned a few parts of Amy’s book about her second heart transplant that triggered me a bit. I had wanted to address them in the review itself, but decided not to, because my review was pretty long. I had included comments about Silverstein’s first book, Sick Girl, that I thought were important. I know that sometimes I have issues with brevity, and people only have so much time and attention span to dedicate to blog posts. So I didn’t comment on the parts of Silverstein’s story that really disturbed me a bit and made me feel a lot of empathy for her situation. I guess I’ll do that today, since I have a bit of writer’s block.

In this blog, I have mentioned on more than one occasion that I have a real problem trusting healthcare providers. I experienced some traumas at the hands of doctors that have left me very nervous at the prospect of seeing them for treatment. I know it’s crazy, given my educational background. I used to work with doctors before I became an overeducated housewife. A couple of them were also my classmates in my public health graduate program. But there’s a difference between being “colleagues” with medical doctors and submitting to them for care. I know intellectually that most doctors are responsible and decent and do their best to provide excellent care. However, I have run into a couple of them that left me with lingering issues. Being in Amy Silverstein’s medical situation would be a special kind of hell for me. I probably would have given up on life many years before she finally succumbed.

The first part of My Glory Was I Had Such Friends that “triggered” me a bit was Silverstein’s story about how she needed a pacemaker. Because of her vast experiences with medical procedures over decades of care, Silverstein had an aversion to the drug, Versed. She didn’t want to be “put out” for most of her procedures. Getting the pacemaker was no exception. She wanted to be conscious for it. Her physician, Dr. Wayne, was vehemently against the idea. From the book:

She nods and turns to greet the doctor who’s just come in—a small, quick-moving man with wiry gray hair.

“I am Dr. Wayne. Hello, Mrs. Silverstein.”

“You can call me by my first name if you like. I’m Amy.”

“Hello, Mimi.”

“No, it’s Amy,” I say, and then immediately think to correct myself for fear that he might call me “Itsamy.”

Dr. Wayne’s speech is choppy, perhaps due to his jittery manner.

“Today I will put in a pacemaker.”

“Yeah, I guess that’s what you gotta do.”

“I’ll give you medicine for sleep . . .”

“I’m not going to sleep.”

“Not really sleep. Just very, very relaxed. Like sleep.”

“Nope. No sedation at all. I do everything without sedation unless it’s a surgery. This isn’t a surgery, is it?”

“Not exactly surgery, but—”

“Good then. No sedation.”

The doctor whirls away from the exam table and mumbles under his breath loud enough for the nurse and me to hear: “No sedation! For a pacemaker! Sheesh . . .” He heads into the hallway to scrub up. The nurse remains behind, tending to an array of syringes and small metal utensils.

“I don’t want to give anyone a hard time,” I tell her, “but I’ve had lots of experience staying awake through hard stuff. And I don’t like being put out.”

“You wouldn’t really be out. Just relaxed. We’d be giving you some Versed . . .”

Versed! No way. I’d like to ask her how many times she’s had Versed, because I’ve had it plenty and it’s a nasty sedative. Instead, I press my lips closed. Check your attitude, Amy.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 89-90). HarperCollins. Kindle Edition.

Amy has had enough experience with Versed to know that she really, really does not like it. And it’s her body that’s being worked on; her comfort should be paramount. However, the doctor turns out to be a nasty piece of work. Continued from the book:

That’s what Scott told me just before we headed out to LA. We had a long talk one evening, mulling the challenges we knew would be coming and trying to anticipate what else we might face. “If you’re going to die,” Scott said, “and let’s be honest, you might—you need to think about how you want to act at Cedars, how you want to hold yourself in the end. With your friends—do you want to be loving, or bitter and angry? And with the doctors and nurses—do you want to earn their respect for the way you’ve lived these twenty-five transplant years, or do you want to show how you’ve been wrecked by them? It’s all about how you want to be remembered,” he said.

This was not the first time that Scott had attempted to remind me of my better nature. There had been plenty of instances through the years when frustration and fear overtook me, transforming qualities like self-advocacy, determination, and attention to detail into alienating misbehaviors. The constancy and complexity of transplant-related illnesses would crescendo from time to time, to a point where it felt unbearable—and where it would imbue me with a distorted sense of self-righteousness: Give me a break—I can’t be bothered with decorum. I’m too sick. And then I would rage against Dr. Davis’s missteps, calling him inane, or I wouldn’t pick up the phone for days when friends called to check in, or I’d yell at Scott for no reason at all and then cry and cry and cry. Then came the heavy regret: “Scotty, I’m just so, so sorry . . .” and he would close his eyes and shake his head. “You’re dealing with unbelievably scary stuff, I know. But you’ve got to find a way to stop taking it out on the people around you.” If I didn’t, he said, I would send everyone scurrying away.

I tried to do better. With each successive medical crisis, I got a little more adept at keeping my fear from spiraling into anger and spurring me to lash out. But I found that the success of my efforts was only proportional to the health challenge at hand: the more life-threatening it was, the less I was able to contain my angst. What degree of self-control, then, would I manage to exert in the face of this retransplant? I was yet to find out. But it spooked me to notice that, in light of what awaited us in California, Scott had rephrased his usual advice about how I might carry myself in the hardest of circumstances. For the first time ever, he was framing his words in a context of finality, asking me not about how I might want to be perceived but rather remembered.

I just want to be remembered without everyone misunderstanding me. I know this doesn’t speak to the self-reflection Scott hoped for. But right now, this is what comes to mind as I contemplate how I might explain to this nurse my aversion to Versed. I know my stance is unusual; when patients hear that they’re getting a drug to help them relax before an invasive procedure, they see no reason to object. But long, hard-earned experience has taught me this: Versed messes with your mind. It’s a powerful, tricky sedative that makes you think you’ve slept through the procedure when actually you were awake the whole time. Versed is, simply, a forgetting drug, but its powers of erasure are imperfect. Somewhere in your mind (and certainly in your body) there is a flicker of awareness that something happened to you (for instance, you might have been screaming in pain throughout the procedure), but you can’t quite get at it, so an anxious ambiguity scratches at you and festers. There is a cost to not being able to access and process our own pain and suffering—some might call this post-traumatic stress. I’ve experienced it myself, and this is why I’ve come to insist on keeping things where I can see and process them—without Versed.

I share my thinking with the nurse.

She walks from the tray to my stretcher and lowers her voice. “I agree with you. And too much Versed isn’t good for your brain cells either.” She taps her head. “But Amy, I’ve never seen a patient do a pacemaker implantation without sedation. It’s going to be rough.”

“I hope you’re wrong. But thank you.”

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 90-91). HarperCollins. Kindle Edition.

Then, comes the assault by the doctor. This was the part that set me on edge, although I feel pretty sure that if I were Amy, I’d want the drugs. I’d rather be out cold for these kinds of procedures. Or, at least I think I would prefer to be. So far, I’ve been blessed with pretty good health and haven’t needed this kind of “care”.

Dr. Wayne stomps back in and comes to a stop by my left shoulder. “I’m going to have to give you a lot. Of lidocaine. Because you said no sedation. Sheesh.”

“Fine with me.” I don’t mind multiple lidocaine shots. I’ve accumulated three or four hundred of them for localized numbing in all the biopsies and angiograms I’ve had. From experience, I know that if the doctor gives the first shot slowly—alternating a bit of needle with a bit of lidocaine—subsequent injections will become quickly pain free.

BANG!

Dr. Wayne slams the first shot into the left side of my collarbone.

“Ow!”

“That hurt you,” he says.

“My gosh, yes. Ow. In New York, the doctor gives a little bit of lidocaine at a time so . . .”

“I said you would need a lot of shots. Because of no sedation.”

BANG!

This one feels like it has vengeance behind it. I clench my teeth, determined not to give in. BANG and BANG—two more in rapid succession.

That’s it.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 91-92). HarperCollins. Kindle Edition.

Imagine having a doctor who is noticeably ANGRY because a patient stood up for herself. And instead of realizing that it’s her body and her healthcare at stake, the doctor is cruel and deliberately causes pain, rather than trying to work with the patient and respect her wishes about how her body is treated… or at least trying to assuage her valid anxieties about the procedure. The story continues:

“Ow! Ow! Oh my God! I can’t take it!” I’m weeping now, and I can’t believe I’m crumbling this way. I don’t cry from pain. What pierces my armor this time is the frightening vulnerability I feel at the gruff hands of a masked stranger in a cath lab far from the one I’ve known for twenty-six years. Reciting poetry couldn’t possibly combat what is looming over my body at this moment. A nurse’s tender glance would bring me no ease. The reassuring touch points I’ve come to rely on give way to stabs of surprise—each one of them another fiery agony. I have never known cath lab procedures to be scenes of horror, but I feel myself here in the grip of a ghoul.

“It’s too much for you. Right?” Dr. Wayne glares.

“No, I’m strong as hell. I’ve been on a hundred cath lab tables. It’s you! You’ve got terrible hands—has anyone ever told you that? You suck at this! Just give me the damn Versed.” Oh, I’ve really let loose now. I sure don’t want to be remembered like this, but I’ve lost all control.

“Oh, now you want it? I have to call anesthesia. It will take, I don’t know, an hour. For them to get here. Because you said no sedation!”

I pause, taking a few seconds to muster a conversational tone. “You need an anesthesiologist to administer Versed? In my experience, the nurse just puts it in my IV—at least that’s how they do it in New Y—”

“In New York! In New York!” He galumphs away from the exam table, waving his hands over his head. The nurse follows, and I’m alone.

I’ve never been left alone in a cath lab before.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 92-93). HarperCollins. Kindle Edition.

What a fucking bastard! I hope she lodged a formal complaint against that man. The story continues, with Amy fretting because she’s alone in the cath lab, with a very flat pillow. Because of her heart condition, she has trouble breathing when she’s lying flat. So there she is, getting “medical care” that has left her traumatized, and will probably put her life in danger (moot now, since she recently passed away). She continues, having explained that she’s feeling woozy:

Within seconds, the green-clad people descend, ghoulish in their masks and puffy caps, gloves and X-ray shields. There are here to slice into my skin, slide their control wires into my heart. One of them pulls back the sheeting from my left shoulder, where scattered injection punctures still ooze blood onto my naked breast.

The Versed sweeps through my IV . . .

Silverstein, Amy. My Glory Was I Had Such Friends (p. 94). HarperCollins. Kindle Edition.

After the procedure, Amy is deliberately slow to recover, upsetting her friends and husband. She’s traumatized, terrified, and justifiably angry about how she was treated. Her husband’s response, when he realizes that she’s not responding promptly, like a “good girl”, is to get angry with her. But she’s just been assaulted by a “doctor” who deliberately hurt her because she dared to exercise self-determination.

The second part of My Glory Was I Had Such Friends that triggered me was when Amy found out that she had breast cancer and needed surgery. She, very understandably, got angry and upset with her doctor. Rather than listening to the doctor talk about treatment options, Amy stormed out of her office, leading the doctor to worry that Amy might be a danger to herself. Was it childish? Yes… but remember, this is a woman who had been dealing with this shit for decades. She was tired of it. From the book:

The ordeal occurred just three months before the bad-news angiogram (and four months before I headed out to California): a breast sonogram picked up a strange-looking spot in my right breast. I didn’t worry at first because soon after my first transplant, the regimen of immunosuppressive medicines caused benign fibroadenoma masses to grow in my breasts. They were easily spotted on sonograms and sometimes grew so large I had to get them surgically removed. But this particular spot looked different. When I asked the biopsy radiologist if she thought she’d just put a needle into something scary, she threw up her hands. “Gosh, this is a weird-looking one,” she said. “I don’t know what it is.”

It was cancer.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 145-146). HarperCollins. Kindle Edition.

Amy’s friend, Lauren, was involved in the drama that followed, after Amy got the news that not only did she need another heart transplant, but she also had breast cancer that would require major surgery. She continues:

When she reached me with the news, I froze. “Oh, come on! With all you’ve been through, this is easy stuff!” my breast doctor implored. She couldn’t have chosen more enraging words. I’d known this doctor since I started growing those golf ball fibroadenomas just after my first transplant, and I liked her a lot. But she was barking up a dangerous tree at a tragic moment by trying to turn my years of illness into a rallying call, when I was seeing it as a signal to raise the white flag.

“I’m not doing it,” I said. “I had a horrid open-heart valve surgery just a few months ago. And, frankly, my heart isn’t feeling so great lately. I’m not taking on breast cancer. I’m . . . I’m out.”

Ooh. Nice. I liked the feel of these words as they rolled off my lips for the first time—I’m out.

“You can’t quit now! You have to fight this. You’re just the kind of person who’s going to do great—”

“I’m out! I’m out! I’m out!” Wow, I loved the sound—and the sentiment. I’m free! I don’t have to do this anymore! For me, taking on an additional life-threatening illness was completely unfathomable. It was so beyond okay or understandable or doable or fair. “I gotta go now . . .”

“Go where?”

And this is where I made a really big mistake. “I’m leaving,” I said. “I’m getting in the car now. I’m not doing this anymore.”

“You can’t. You have to do this. Amy! Let’s talk! Would you come to the city and meet with me? I’ll cancel my afternoon . . .”

“Bye.”

I left. And then I was driving, blindly. My cell phone rang and it was Scott, telling me that my breast doctor called the local police because she’s worried about me. The police were at the house now, he said, and Lauren was on the way to meet them. He told me to go back home. “I’m out!” I cried, and kept driving.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 146-147). HarperCollins. Kindle Edition.

Amy drove some more to let off some steam. Meanwhile, the cops had broken into her house and ransacked her bedroom, even reading her journals. Her friend, Lauren, was there to deal with the cops, who were there to “save” her life from suicide… A woman who had already had one heart transplant, needed a second one, and had just been told she had breast cancer. She wasn’t suicidal. She was FRUSTRATED… and understandably so. But the cops had violated her house, all because her doctor sicced them on her. Granted, the doctor had to make the call, due to the law. If she believed Amy was a danger to herself or others, she had to call the police, or else face potential adverse legal ramifications if Amy came to any harm at her own hands. And yet, the scenario just seemed so ridiculous to me. Her friend Lauren explains:

“I get a call from Lenny and he says to go to your house because the police are coming. I don’t know if you’re there or not, but I race over,” she explains. “I pull up to your house and there are three cop cars and they are on your lawn—why they didn’t park on the driveway, I don’t know. I go to your door, and the police have busted through the window. I walk in and hear them in your bedroom, so I head upstairs and they’re rifling through your closet and drawers—clothes are everywhere. One of them has got your journal and he’s standing there reading it. I think to myself, I have a job to do. I have to protect Amy. And I dive into conversation with those cops, rambling on and on, pretending to be helpful. They ask me what color your car is, and I waste ten minutes saying, Hmmm, I don’t know. They ask if you were likely to head north or south, I tell them north—because I know you’re much more likely to go south . . .”

I get a call from Lauren, and I don’t pick up. Another call, and I don’t pick up.

“I keep trying your cell, but you won’t answer. The cops are asking me, ‘Would she hurt herself?’ and I tell them no. She got some really bad news and she wants to be alone. I know her well. She’s fine. But they tell me I have to call you again because they want you back here. They put an alert out on your car.”

Meanwhile, I call my breast doctor and the receptionist puts me right through. “Why did you call the police!” I shout. “It’s my choice to fight breast cancer or not. You’ve known me so many years, you’ve seen all I’ve been through—how can you force a decision on me? I can’t believe you did this!”

“I’m sorry, I’m sorry. I’ll call them back. It just sounded like you might do something . . .”

“I’m fine. I’m upset because . . . how many times and in how many ways can I be dying? I’m not going to drive off a bridge, for God’s sake! And even if I did, that would be my business.” I’m shuddering with anger.

“But I’m under legal obligation, Amy. I could get in trouble if I know you are going to hurt yourself and then you do.”

“Well, I’m not going to hurt myself. But I am not going to take on breast cancer either. I just had valve surgery. It’s my choice.”

“I’ll call the police and tell them everything is okay, but you have to come and meet me to talk. I’ll meet you at my house or at Starbucks near my office if you want. I just want to lay out what the treatment would be so you can make an informed choice.”

“Okay, I’ll meet you. Four thirty. Starbucks. Now call the police and tell them I’m fine!”

A few seconds later, Lauren calls again, and this time I pick up. She asks me if I’m all right. “I need time alone. I don’t need another person telling me I have to fight breast cancer, blah blah blah!” I tear at the zipper on my winter coat, tugging it down as I shake my shoulders out from underneath, frenzied. I am boiling with fury.

She tells me the police are there. My doctor hasn’t reached them yet.

“I heard. And I know everyone wants me to come home and be a good little breast cancer–valve surgery–heart transplant patient, just racking up the life-threatening illnesses and their shitty, half-assed treatments—”

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 148-149). HarperCollins. Kindle Edition.

I know a lot of people think Amy should be grateful to have so many people caring so much about her, but at the same time, I can hardly blame her for this reaction. It almost seems like a farce. She’s in such poor health, yet she has so much strength that people think she might off herself. It’s crazy. Lauren goes on to explain that while Amy is seething, the cops are listening. And she has to act neutral, while Amy is yelling at her, calling her “the worst friend”. Lauren then cleans up the mess and even gets Amy’s window fixed, after the police busted it to “save her life”. All because the breast doctor called the cops.

And finally, the last triggering moment for me was reading about how a pharmacist inadvertently told Amy that she had been enrolled in an experimental protocol to which she’d never consented. It ended with the pharmacist running out of the room in tears… From the book:

She had her eyes straight ahead on the screen, keeping up perfunctory conversation while skimming the dense pages. “We’ll be bringing all your meds into the modern age after your transplant. Now . . . um . . . you asked me about whether you can take . . . Oh, wait a minute . . .” She zooms in on some words that elicit a big smile. “Ooh, I see that you’re going to be part of our eculizumab study . . . wonderful!”

“Ecu-lizumab?”

“Yeah. Name’s a mouthful, right? I don’t blame you if you can’t pronounce it. I’m talking about the experimental treatment for your antibodies. You’re going to be part of our NIH study.”

What?

I’d heard a little bit about the study from Dr. Kobashigawa a few days earlier, and someone from the Cedars medical research team dropped off a thick binder filled with detailed information for my review. But this intravenous drug with the mouthful name was a chemotherapy of sorts and had serious side effects, including a significant risk of meningitis. Were I to participate, these treatments were not imminent (they wouldn’t kick in until the time of my transplant surgery). But I had already undergone another potent antibody remedy when I first arrived in California (bortezomib) that posed a risk of blood infections and death. The bortezomib treatments involved a series of direct injections into my belly and many of hours of antibody-cleansing plasmapheresis (plasma removal and replacement) through a thick catheter in my neck. Last I heard, though, the post-bortezomib state of my antibodies was not much better than before treatment; my chance of matching with a heart donor still remained at an inauspicious 14 percent. Feeling fortunate, though, for having at least evaded the dangers of bortezomib, I was not eager to risk another go-round with a second type of antibody treatment—especially an experimental one.

“You’re sure my name is on the study roster—already?” My voice rises.

She pecks at the keyboard, double-checking. “Yup, here you are!”

I jolt upright in bed. “But how can that be? I haven’t said yes!” Pressing my palms against my temples, I begin to reel. “I can’t believe this! Am I being steamrolled into the study?”

“No, no. But the team has decided—”

“The team? I’m the one who’s supposed to choose.”

“Of course you are, but—”

“I have a voice!”

“I didn’t mean to make you feel—”

“Just because I’m . . . sick . . . it doesn’t mean I don’t . . . have a say!” I’m choking on emotion now. Scott steps toward the bed and puts his hand firmly on my shoulder—Easy, let it go . . .

Not a chance.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 183-184). HarperCollins. Kindle Edition.

This part of the book reminded me of a book I’d read years ago, A Taste of My Own Medicine: When the Doctor Is the Patient, by Edward Rosenbaum, a physician who got cancer and suddenly found himself on the other side of the bed. The 1991 movie, The Doctor, starring William Hurt and Christine Lahti, was based on Dr. Rosenbaum’s book. Dr. Rosenbaum explained how scary and demoralizing being a patient can be, and how healthcare providers lose sight of how patients can feel disenfranchised when they submit to medical care. Especially when it’s delivered in a hospital setting.

Amy then explains why she had this reaction. She’d been in an experimental study before, and it led to a significant trauma. From the book:

I’ve come to think of this particular memory as the strawberry shortcut—a lesson that came by way of a pulmonary lab technician who said playfully, “Let’s take the strawberry shortcut,” when escorting me from the waiting room to the exam suite. It was 1988. I was in my second year of law school, and my doctor wanted to rule out all possible causes of my very apparent breathlessness. Heart problems seemed so much less likely than lung problems in a woman in her midtwenties, so he scheduled a progression of tests that began with pulmonary.

As I followed in the wake of the technician’s perfectly pressed white coat, turning and turning again through a seeming maze of narrow hallways, he called back to me over his shoulder a preview of what was to come. Apparently, I would soon be breathing in some—particles? Nuclear particles? I didn’t understand—I’d never had even so much as a strep throat culture in my twenty-five years of life—so I obeyed with some trepidation when he placed the clear plastic contraption over my mouth, nose, and a good portion of both cheeks. “We’re friends here, aren’t we? So just relax into it and breathe deeply,” he cooed, and I tried. But there was nothing about inhaling the particles he administered that made me feel friendly or comfortable. He noted my reluctance at once. “Oh, you’re going to have to go deeper than that, pretty,” he said.

Pretty?

My stomach muscles tightened with angst. I began to shake.

“In . . . and out. In . . . and out,” he coaxed, moving his face closer with each round of inhalation and exhalation until his lips and the tip of his nose were in line with mine, pressing up against the plastic.

I closed my eyes and I felt some tears fall. I’m trapped. My doctor can’t make me better unless I do this test. I’ve got to get through it. Come on, Amy, breathe . . .

“That’s it . . . niiiice,” the technician purred. “And again, for me . . .”

When the test was finished, I hurried off the exam table. “Hey there,” he said, reaching for the door handle before I could. “How about a kiss for the technician?”

“How about a handshake instead!” I snapped, surprising him with a sudden show of nerve. He murmured something about a hot tamale and grasped my hand.

A few days later, I filed a complaint with the hospital and was told there was nothing they could do since I didn’t remember the tech’s name. And besides, they told me, “Maybe he was just trying to help you relax.”

That was the start of my growing a backbone as a patient. Hell, if the same thing were to happen to me now, I’d respond directly with, Kiss? How about you kiss your job good-bye!

Fifty is so much braver than twenty-five, you see.

Silverstein, Amy. My Glory Was I Had Such Friends (pp. 184-186). HarperCollins. Kindle Edition.

I was never sexually harassed by doctors, but I did have one who left me very traumatized due to her being extremely callous. I wish like hell I had complained about her when the incident happened. I don’t know what would have happened. Probably nothing. But at least I would have done something… and that might have made me feel more empowered. I am fifty now… and I was 22 then. So this story really hit home and left me a little triggered. Amy continued:

Though today’s situation was quite different, it preyed on some of my greatest medical fears, those that had developed out of the strawberry shortcut incident and countless others over the years: feeling a lack of agency, feeling uninformed, and feeling taken advantage of. And this is why I felt no trepidation this morning when telling the transplant pharmacist that I wanted to speak with her supervisor: Dr. Kobashigawa. She logged out of the screen at once and backed away from the computer. “I’m sorry to see you so upset about this.”

“And I’m sorry for these stupid tears, but I can’t help it. I’ve learned the hard way never to turn off my brain and hand myself over. I’m not going to agree to ecu—whatever it’s called—without reading through the whole binder and making my own decision.”

“I understand. But keep in mind we’re just trying to help you, Amy. You’ve got antibodies that are going to pose a danger to any donor heart you might receive. You can’t be transplanted successfully without eculiz—”

“I can’t? Are you saying I don’t have choice? That I never really had a choice? Who told you that? Dr. Kobashigawa?” My fingertips fly to my forehead and I begin tapping, tapping. A rush of panic sweeps through me—Have I been duped?

She started toward the door, pulling nervously at the ends of her hair. It was apparent that Becky had let on more than I was meant to hear just yet, and that perhaps she might be in trouble for it. “I’ll, um, ask him to come see you.”

But the memory match had already struck and ignited. All of a sudden there were words in the air—my words—and they rang calm and clear at first, but then echoed back to me calamitous and full of smoky black, as if tethered to distant fires. Whatever I was saying was not of this moment; it was cumulative—and ablaze: “Wow, Becky, wow, wow, wow. As if I didn’t feel out of control to begin with, watching my pulse disappear day after day. Thanks a lot. You sure know how to make a dying person feel worse.”

“That wasn’t my . . . Oh, I am sorry!” she squeaked with panic, tears welling in her eyes. She quickly turned away and slipped out the door.

Silverstein, Amy. My Glory Was I Had Such Friends (p. 186). HarperCollins. Kindle Edition.

I did feel sorry for Becky, the pharmacist. I know she was just trying to be helpful. And I’m sure it’s a tough job, as today’s patients are often better informed and more outspoken. On the other hand, a lot of people would be calling Amy a “karen” (hate that term) for advocating for herself. Clearly, her issues stem from understandable and considerable trauma. And even though I could understand that a lot of people would find her behaviors very “karen-ish”, as someone who has also experienced medical trauma, I could hardly blame Amy for her response. She probably couldn’t help it.

I have had some good experiences with doctors since my last trauma. However, in spite of that, I have a hard time shaking those memories. It’s kind of like how Noyzi, the Kosovar rescue dog, spooks at sudden noises and movements. He’s had good experiences, but still reacts in an automatic way to those triggers. I’m the same way. I get extremely nervous just thinking about going through what Amy went through. So, when I read her book, I thought of her as brave, rather than entitled and ungrateful. She had backbone, even if she came off as abrasive. And again, I could hardly blame her.

In a way, my recent post about body shaming that got me on my relative’s shit list is sort of the same thing. I used to just take that sort of thing without too much comment. I don’t anymore, and some people think it’s offensive. But my reactions come from valid traumas of the past. I’m sorry if some people find my reactions upsetting, but they don’t come from a place of meanness. They come from trauma. I think Amy Silverstein’s reactions were the same thing. So, I kind of felt a kinship with her… and again, realize that she must not have been all bad. After all, she did have such friends. Wish I were so lucky… but at least I have a wonderful husband.

Well, this post has gone on pretty long, so I think I’ll end it and practice guitar for a few minutes. If you managed to wade through this long ass blog entry, I thank you. And if you managed to understand it on any level, I congratulate you. Until tomorrow….

Standard
communication, complaints, condescending twatbags, rants, slut shamers

You really don’t need to comment either way…

On this date in 2012, I took the featured photo in Cologne, Germany. We were on our very first “hop”, which took us to Germany, Austria, and Luxembourg. I spotted this sticker on utility equipment and snapped a photo. It fits today’s topic perfectly.

Happy Sunday, folks. It’s another pretty, late spring morning here, and already 69 degrees Fahrenheit, which is pretty nice. I know it’s hard to fathom to those of you in the southern United States, but it’s still a bit chilly in Germany. I don’t look forward to the hot, un air-conditioned days that are coming, but right now, the weather is getting more pleasant.

Our Nordic holiday is rapidly approaching. I have experienced Scandinavian and Baltic countries in the summer, and I know that it will behoove us to bring layers. I remember the first time we went to Norway, back in June 2009, and we both had to buy warmer clothes. Bill got two sweaters, and I got a hoodie and a sweatshirt. I loved the hoodie and was pretty sad when I lost it after our 2014 “hop” to France and Germany from Texas. Perhaps I’ll find a new one when we’re up there.

I’m kind of glad we’re going up north next month. I probably won’t be wearing a bathing suit in public. Maybe I’ll wear one on the cruise ship, but I’ll bring a robe with me. Actually, one thing I’ve noticed and really enjoyed in Europe is the less judgmental and shitty attitude people tend to have about other people’s bodies. This is especially true in Germany, where there are a lot of health spas in which being nude is a requirement. I’ll admit, as an American, it was hard for me to embrace the idea of being nude in a “public” place. However, once I did it, I found the experience very liberating. Nudity isn’t a big deal here, so you see all kinds of people at the spa. All of them are there for themselves, and it’s not a big deal if you don’t have a bikini or Speedo worthy body.

Yesterday, a friend shared the below post on Facebook. I liked it, so I decided to share it, too.

I added the comment, “Yup. Zip it.”

Now… I’m going to clarify. Personally, I don’t objectively think that every body is necessarily beautiful. However, I do believe that (almost) every person has basic worth. I do think that we should show basic respect to people, and do our best to preserve their dignity. I completely agree with the original poster’s statements that people don’t need to make comments about other people’s bodies, positive or negative. You really don’t need to comment either way. I honestly don’t see why people feel emboldened to make such personal comments to people, especially when they are total strangers.

A lot of my friends saw the above post and liked it. However, I did get one comment that I’m afraid has given me something to write/rant about this morning. It was actually a little embarrassing on many levels. A family member, seeing the above post, wrote this:

You look GREAT💕

In fairness, this family member is related by marriage. She’s married to my dad’s first cousin (my first cousin once removed– Granny’s nephew– and the son of my fabulous late Aunt Estelle, who was hilarious). She has known my parents for years, though, because she’s from the Tidewater area, and used to patronize my parents’ business. One time, we went to our annual Thanksgiving shindig and she was there with cousin Jimmy. She didn’t even know Jimmy was my dad’s cousin, and asked us what the hell we were doing there!

I’m not sure if this relative knew me when I was growing up. She probably saw me a few times, since my parents’ business was run out of their house. However, she hasn’t seen me in person since 2014. Moreover, it’s pretty obvious if you actually READ the post before reacting or commenting, that I am not the original poster. Anyway, I wrote this response, with a laughing reaction (though I kind of wanted to post an orange, angry reaction):

Uh…. That isn’t me.

My relative posted this:

🤣😂🤣oooops!

If my relative knew me better, she’d know that I never wear bikinis. I probably should wear them, since it’s easier to go to the bathroom if you have a two piece bathing suit. But when I do wear bathing suits, I prefer to wear one pieces. Anyway, I responded thusly:

When I go swimming, I’m usually nude. Plus, I could never grow my hair that long.

And this is the truth. In Germany, when I go swimming, it’s often at a health spa, and a lot of them are nude. So when I swim in Germany, I do often go swimming in the buff. When I’m not in Germany, I don’t wear bikinis. And I have never had long hair like the woman in the picture has. My hair simply won’t grow that long. I’ve tried.

My relative wrote:

I did notice her hair is longer than yours usually is!

Right. And did you also notice that she’s got darker hair than mine has been in years? She probably has a “better” figure than I have, too (although tastes differ). 😉 I was a bit perturbed and it was later in the evening, so I made one more response.

She’s also a bit younger.

People should be able to go swimming or whatever and not have people comment about their bodies. I like how it is in Germany. Nudity isn’t a big deal here, so you see people of all shapes and sizes, especially at wellness spas. Nobody cares. It’s very liberating.

This was my main point. You don’t need to make a comment of any kind about other people’s bodies. You don’t need to reassure someone that they look “great”. You don’t need to compliment them, nor do you need to tell them they’re too fat, too thin, or need to wear a bra, shapewear, or a girdle. Just let them live in their own skin in peace.

If you must comment, try to pay attention to other things, like whether or not they look happy. Stop focusing so much on the external appearances of other people– especially those you don’t know personally. Most of them won’t care about your opinions either way, and by keeping your mouth shut, you avoid embarrassing and traumatic situations with strangers.

My relative still didn’t get it. She posted this…

You could pass for that age…whatever that may be!

Well gee… thank you. But a compliment on my looks was not what I was hoping for when I shared that post, as much as I appreciate being complimented. It’s not that I don’t like being told I look young, or beautiful, or whatever else. I do like hearing sincere compliments. Sincere is the operative word, and really, compliments should come from someone whose opinions matter to me.

I did visit the original post, just to see what other people’s reactions to it were. Naturally, there were many comments about how “obesity isn’t pretty”. Some were from mansplaining males who expect women they deem unattractive to cover up. Some were, sadly, from women who harped on what’s beautiful and “healthy”. Others posted backassed things like, “I wouldn’t do it, but good for her.” A comment like that tells me that you’re trying to be “nice”, but you still disapprove. The woman in that photo doesn’t require your approval or your opinion. Just zip it, and mind your own business.

Everybody has a story. You have no idea what’s going on in that woman’s life. For all you know, she might have just lost a lot of weight. Or maybe she just gained a lot of weight. Maybe it’s the first time she’s been to the beach in years. Or maybe she visits the beach every day, and it’s her happy place. Who are you to intrude on her business with uninvited comments about her body? Why do you think she, or anyone else, should care what you think about her body? You’ve got your own body. Pay attention to that, instead.

I’ll be honest. I don’t like it when people make comments about my body. They almost never make me feel good, even when they’re positive. When they come from men, they make me feel skeevy. When they come from women, they make me feel bullshitted. And no matter what a person does, there’s always going to be someone who is critical. Even if everyone was an “acceptable” size for aesthetic purposes, there would always be someone out there with a criticism or a backhanded compliment. Seems to me that people really ought to just STFU about other people’s bodies and mind their own business.

Last weekend, I took some photos with Bill at a street food festival we attended. They turned out really nicely. Below is the photo currently serving as my profile picture.

Maybe I look “pretty” in this photo, but I would much rather someone say that I look happy.

One friend left a comment that I really appreciated. She wrote, “Great picture!” That’s really all anyone needs to say, if they say anything at all.

I know not everyone shares my opinions about this subject. My thoughts on this probably come from being raised by people who were very image conscious and constantly criticized me for not looking “good” at all times.

I can remember my dad grabbing me by the head and forcibly combing my hair as he claimed it “looked like a rat’s nest.”

I can remember my mom looking at me with disdain and saying, “Why don’t you go put on some makeup?” Alternatively, when I got dolled up, she’d pull out the camera for a photo… as if it was such a rare and momentous occasion that it demanded to be preserved for posterity’s sake.

I can remember both of them giving me endless shit about my weight when I was a teen and a young woman, even as I flirted with eating disorders. My dad called me names. My mom tried to bribe me with new clothes, as she pleaded with me to lose weight. It made me feel unloved, ugly, and unworthy, and eventually led me to depression bad enough that I saw a psychiatrist, who also fat and appearance shamed me (but did at least find the right antidepressant).

It took years after that to stop going on starvation diets as I constantly made derogatory comments about my body to anyone who would listen. I’m sure that was as tiresome for other people, as it was not helpful for me. I don’t want to go back down that road.

Years after my last appointment with that psychiatrist, I asked for his notes to be sent to me, because I needed to give them to the Army for an EFMP screening. I made the mistake of looking at what he wrote about me. He made quite a few comments about how I wasn’t losing weight, and how I looked “garish”. I guess he felt my clothes were too “loud” for being my size (about a 14 at the time). He gave me medication that was supposed to be used for migraine headaches and seizures for an off label use– it caused appetite suppression. He was obviously very disappointed when it didn’t cause me to lose scads of weight. (This experience, by the way, is the main reason I don’t go looking for people’s opinions about me or this blog. I’d probably rather not know.)

I already had little trust or regard for doctors at that point in my life, mainly due to the very disrespectful and traumatic way I was treated by an Air Force OB-GYN at my very first gyno appointment. When I read those notes by a psychiatrist, who was supposed to be helping me with depression, I trusted them even less. That doctor’s notes should have indicated things like whether or not I was appropriately dressed, or adequately groomed for the occasion. Comments about my weight might have been fair enough, but only in terms of my health. My personal makeup and clothing style should not have factored into my records at all. Using the word “garish” to describe me was completely inappropriate. I think he had a bias against people he deemed to be “too fat”, and felt entitled to share them with patients who came to him for help.

When I was younger, maybe I would have appreciated fake compliments about how “good” I looked over rude comments about body image. But today, at almost 51 years of age, I’d much rather people just focus on what’s important… and what’s important is NOT what my body looks like. Because if you think about it, people who body shame are basically expecting everyone who doesn’t meet their standards to just hide away somewhere until they’re more suitable for public view. That’s not a fair thing to ask of anyone. Moreover, most of the people who make those kinds of comments aren’t exactly hot shit themselves. 99.9% of the time, you really don’t need to make a comment at all… just zip it, and leave the person alone to enjoy their lives. By keeping your mouth shut, you will keep them from experiencing unnecessary trauma, and you will keep yourself in good karma. Just my thoughts.

And… just to end this post on an amen, the wonderful singer, Jane Monheit, posted this on Twitter in 2019:

I would also add… please don’t give people unsolicited advice, either. Especially on something as personal as their body image. If someone wants your advice or input, they’ll ask for it.

Standard
communication, healthcare, holidays

Today is the first day of the rest of the year…

Happy New Year, y’all. I will do a write up of our personal festivities on my travel blog; because let’s face it, that blog needs some love. For this blog, I’ll just say we had a basically nice time… except for the point where I got into a rather serious discussion with Bill about the logistics of my living in Germany and accessing healthcare. It’s not that I have an immediate need for it… but I’m not getting any younger. Because we’re here at the pleasure of the U.S. military, I could either go to a German doctor, or I could go to Landstuhl (U.S. military facility). And because I never go to the doctor, I literally don’t know what I would do here if the need suddenly arose for me to seek medical care. On the other hand, I do know how to call 112, and that’s probably what it would take before I would willingly go see a doctor.

I think this subject came up because we were talking about what our plans will be after it’s time for Bill to quit working so hard. We were talking about younger daughter, and how her husband has launched a good career. They hope to move sometime soon, because the apartment they live in is too small for their family. Bill mentioned that it wouldn’t be long before they might buy a home of their own. And I kind of wistfully said, “They’ll probably be homeowners before we will.”

I always thought by now, I’d own my own house somewhere, and I’d be settled, perhaps with a family of my own. Instead, I’ve been in this weird kind of limbo, where half my stuff is in the United States, and a lot of my friends and most of my family are there… but here I am in Germany, where I’ve been for close to half my marriage. It does feel kind of like home, and yet I don’t really speak the language… and I don’t have a lot of friends. None of my family, except for Bill, lives here. It’s not a bad thing… It’s just not what I expected for my life. Nothing has really turned out the way I figured it would. Well, except for the fact that I went to graduate school.

I do remember in high school, being asked on some kind of government research thing– maybe it was a standardized test– about the level of formal education I expected to attain. Even back then, I assumed I’d get a master’s degree. However, I thought it would be in equine studies, or something similar. I don’t even know if such a program exists. But I do remember, back then, feeling daunted by the prospect of getting a master’s degree. I thought it might be too hard for me. I sure didn’t expect that I would get two of them at the same time, or that they would be in either social work or public health. When I was a teenager, I probably had a better idea of what I was good at, academically speaking. But when the time came to go back to school, I was simply trying to become employable, so I could launch my typical “American dream” lifestyle. And look what happened! I bumped into Bill online, and became a nomad, which made launching that career very difficult.

So anyway, we were talking about home ownership when Bill retires, and Bill said that he would like to buy a house in Europe somewhere… maybe Italy, Spain, Portugal, or even France. Germany is also, of course, a possibility, although I think it might be more expensive here. We do know Americans who have retired here, though. And Bill said that he wanted us to own a home so I wouldn’t have to deal with renting anymore. He says he thinks he will predecease me. I said I wasn’t so sure. Bill goes to the doctor, and I never do. I was very traumatized by an Air Force gynecologist years ago, so even though I “know” better, it really takes a lot to get me to see doctors. I despise military healthcare.

I understand logically why it would be a good idea to go see a doctor and get checked for certain things, like high blood pressure, cancer, and diabetes. Hell, I even studied public health, where I learned about the value of screenings and preventive healthcare. But psychologically, I just have a very difficult time with it. And it’s even worse in a country where I don’t speak the language fluently, and people tend to be blunt about certain things. I can’t imagine my taking it without getting really upset. I know that putting it off only makes it more likely that I won’t have a choice in providers when I finally see one, because it will be in emergency circumstances. On the other hand, I’m not sure how I would choose a doctor here, anyway. And I’m not even sure if it’s worth the time and energy to go to one.

I know Bill would be devastated if I died before he does… but he has people who will be there for him. He has two daughters, and one speaks to him. She has children who call him “Papa”. I don’t have any descendents. I just have a bunch of cousins and three older sisters, who always felt more like aunts. So, I guess I just don’t see why I’d need to hang around. I certainly wouldn’t want to live as long as my Granny did. She was almost 101 when she died. When I consider how stiff and painful I get in the mornings, I truly dread being that old… particularly with no one around who cares about me. I guess it’s just the pragmatic/depressive side of me coming out again. 😉 I have to die anyway, right? So why prolong the inevitable?

I asked Bill if it bothers him that I don’t see doctors. He said it does, although he never says anything about it. He is respecting my “agency”, I guess. So I asked him what he would do if I told him I’d found a lump in my breast (not that I have). He said he’d want me to have it checked, and would probably insist. The idea of that makes me cringe, though. Because it’s been so long since I last accessed the healthcare system that there are many screenings I’ve missed. I know a lot of them would be suggested and encouraged. Or maybe not. Either way, I’d probably end up stressed out and upset. In fact, thinking about this topic is very unnerving to me, so I think I’ll move on.

So… that’s how we wound up on that topic. Bill would like to settle abroad, because the lifestyle suits us. I wouldn’t mind living abroad, either. I truly think it’s better over here, in many ways. It would come at a cost, I guess… weakening family ties and friendly relations, such as they are. But I can’t see myself wanting to live in an American subdivision somewhere, with homeowners’ associations dictating what color I can paint my shutters or whether or not I can have a garden. 😉 But the truth is, there’s no telling where life will lead us. We have no reason to stay or go anywhere in particular. I don’t see us willingly moving to Utah, which is where younger daughter lives. I know it’s pretty there, but I like my communities less religiously oriented.

Fortunately, the subject soon changed, because we happened to be having it while we were enjoying the last of the evening’s libations. It was almost time for the proverbial ball to drop. And once it did, we went outside to watch the fireworks. There were a lot more of them this year, of course. Our neighbors were in the street, setting them off. They set one off very close to our car, which concerned me a little bit. I’m glad to report that no Volvos were injured during the fireworks display last night.

Well… I’m sure there are other things I could write about, and maybe I will later. But for now, I think I’ll go to the travel blog and write something a little less sobering.

I hope your first day of 2023 is shaping up well. Remember, today is the first day of the rest of the year!

The featured photo was taken last night. For some reason, I always seem to think I can capture fireworks on camera. It very rarely happens.

Standard
family, musings

On being a black sheep who isn’t missed…

This is kind of a depressing post… but although I wrote it a few years ago, I found myself saying almost the exact same things last night. And although we had a fun evening at the wine stand, I started thinking about this stuff that I probably shouldn’t. I also think I need to see a doctor… but I can’t bring myself to make an appointment. The thought of seeing a doctor fills me with dread and anxiety. And, to be honest, I also don’t really feel like I’m worth the effort. Just the idea of asking for an appointment and getting there seems overwhelming and pointless. I worry that it will set off a cascade of other appointments that I don’t want to deal with. I probably feel this way because of the way I was treated when I was a lot younger.

For much of my existence, I’ve gotten the message from various important people in my life that who I am isn’t okay.  I was always too loud, too opinionated, laughed too much, weighed too much, said too many weird things, overshared too much, offended too much, and simply needed to be taught how to be a lady of some sort.  Many of the people who shared this message with me, either verbally or non-verbally, were close relatives.

I don’t know what Joanna Connor’s life is like, but I relate to her.  I suspect people have the same opinion about her they did about Susan Boyle, before they heard her sing… and the way some people do about me before they get to know me.

The most hurtful messages came from my own father, who often criticized me.  More than once, he left me with the message that no man would find me attractive and I would never make more than minimum wage.  Then, sometimes he’d reverse that comment and say I was “good looking” (after assuring me that he didn’t have to say that even though he was my dad) and, sometimes with surprise, he’d say I was smart.  Although I do remember a few times when he genuinely seemed proud of me and my accomplishments, other times, he acted like I was an embarrassment and a huge pain in his ass.  

Far from having a protective attitude toward me, my dad sometimes actually put me in danger.  I still have physical scars formed in childhood that were a direct result of his boneheaded decisions.  I have a deep scar on my left arm caused when he forced ten year old me to use a box cutter to break down cardboard boxes.  I wasn’t very adept at using the box cutter.  It’s not like he gave me a safety lecture beforehand.  Before long, there was an accident.  The blade slipped from the cardboard and punctured clean through all of the layers of skin on my arm.  I should have gotten stitches, but he didn’t bother to take me to the hospital.  I said I didn’t want to go, and he didn’t insist.

A couple of years after that, my dad took me bike riding.  He wore a helmet and I didn’t.  I had a pretty bad accident when my tires hit some gravel on the side of a busy road (Rt. 14, for Gloucester people who know the roads).  I fell and slid on the pavement, in front of several cars.  I got road rash, sprained a pinky, and had gashes on my face and legs.  I still have a three inch linear scar on the back of my thigh caused by the large sprocket on my bike cutting into my skin.  A nice lady picked me up in her car, while another passerby put my bike in their truck and drove me home. 

Dad rode home on his bike and, once again, neglected to take me to the hospital, even though I had also hit my head.  The next day was the first day of school and I went, looking and feeling terrible.  I remember I made a bad decision to wear an angora sweater.  Little hairs from the sweater were stuck to the huge road rash I had on my side.  There were other situations like this, where I was either neglected or forced to do things that weren’t age or experience appropriate.  I suffered the consequences while simultaneously hearing that I hadn’t been wanted and was a source of shame.    

I also think my dad was very jealous of the fact that I can sing.  In fact, I think he sometimes tried to compete with me.  Like, for instance, in 1998, when I decided to start studying voice privately again, he decided to take lessons from the same person.  He’d bring my mom to his lessons.  When I left the area to go to graduate school, he quit the lessons.

When I first told my dad about Bill, he made jokes about the fact that Bill was LDS.  In fact, everyone in my immediate family seemed to have doubts that I could be dating a really nice, good looking, gainfully employed man.  They also seemed concerned about my competence in picking my own mate.  I got comments from family members who said things like, “I’m surprised at how cute Bill is.” and “Are you sure you want to be dating an Army guy?”  More than once, I heard from my sisters about how unhappy my mom was as an Air Force wife.  They apparently wondered if I had considered her unhappiness when I made the decision to marry Bill.  

Evidently, despite seven years of post graduate education and two years spent living abroad, I wasn’t competent to think about these potential issues.  My mom was nineteen years old when she married my dad.  I was thirty when I married Bill.  Curiously, I don’t remember anyone in my family being concerned about Bill’s psycho ex, who has been the real source of any discontent I’ve experienced (and it’s been pretty minimal, actually).  Later, after we did get married, they mostly seemed to like Bill better than me.  Especially, my dad, who toward the end of his life, clearly preferred Bill’s company to mine.  I don’t blame him for that.  Most people prefer Bill to me.  I’d rather spend time with Bill than almost anyone else, myself.

Later, I’d hear criticism about how Bill and I spent our money (Are you sure you can afford a Mini Cooper?), my looks (Oh my God, you’ve gained weight), my behavior at age 30 (You’re causing a disturbance!), and how I spent my time (Why don’t you get a job while Bill is deployed for six months?).  Sometimes, family members would try to manipulate me into doing things instead of making respectful requests (How long does it take to drive from Atlanta to Durham, North Carolina?).  This was a question I was asked by a sister who felt she knew how I spend my time and wanted me to hop in the car, drive to North Carolina, split a hotel room with another sister, and put in an appearance at my dad’s hospital bedside so she’d feel less guilty about living in Minnesota, where plane tickets and time off from work are too dear.  Instead of asking me directly, she tried to be manipulative.  When I called her on it, she got nasty and accused me of being selfish.  

I’d also get criticized for the things I wanted to talk about beyond trivial subjects like the weather (Why do you always have to talk about such personal things?) or the way I dressed (Why don’t you put on some makeup and fix your hair?  Wear something nicer than what you have on?).  Often, when I’d call home to talk to my mom, I could tell she wasn’t interested.  Then, they wondered why I didn’t want to spend time with them and quit calling home so often.  Oh… and a lot of people in my family hate the way I laugh.  My dad said I sounded like a witch.  My sisters said my laugh sounded fake.  Even my grandmother complained about my laughter, which I will admit is distinctive.  I can’t help it, though.

As I got older, I started to recognize the same attitudes I got from my immediate family expressed more subtly by my dad’s side of the family.  Most of them are Christian Republicans who engage in very black and white thinking.  I didn’t used to notice it because I was surrounded by it all the time.  Then I moved away and started getting to know other people outside of the family.  It changed my thinking and a lot of my previous attitudes.  I started clashing with certain people in my family.  Others just simply seemed to stop talking to me.  In fact, the last time I went “home”, I literally felt like a stranger.  Like… there were family members who literally didn’t seem to recognize me.  Who wants to spend thousands of dollars on a plane ticket and hours of uncomfortable time on a plane to be treated like that?   

Some time ago, I noticed that a beloved cousin of mine, close to my age and someone I used to play with when we were little kids, kept commenting and responding to posts by other family members.  But she ignored me.  Like, I’d see her “like” something posted by one of my sisters or even one of their friends, but I never got so much as a “fuck you” from her.  It made me feel shitty to have to keep seeing that.  It’s not even like it could have even been a “two way street” situation, since she clearly looks at social media, but doesn’t post anything herself.  Or maybe she has me restricted.  In any case, repeatedly seeing her respond to other family members’ posts and not mine made me feel bad, so I decided to delete her.  It wasn’t easy to do that, but I think it was the right decision.  In fact, I doubt she’ll miss me.  

I deleted another cousin for whom I’ve had some hard feelings for a long while.  Some years ago, I discovered she inexplicably had me blocked on Facebook.  I’d see her at family events and she’d be nice to my face, but then I’d notice some shittiness leaking out that she thought she’d kept well-hidden.  In this case, I think it’s yet another situation where there’s some jealousy and insecurity.  Like me, she’s a musician and used to be the only “singer” in the family.  I sense she resents that I am also a female musical type and, while I don’t play guitar or write songs like she does, I have a much better singing voice.  That sounds like bragging… and you know what?  I don’t really care.  It’s the truth.  (ETA: I wrote this in 2018. This cousin died in 2020. I don’t miss her.)

A few years ago, when my dad was on his death bed, this same cousin, who once had me blocked, re-friended me on Facebook.  It didn’t take long before I began to realize that she mainly did it because my dad was her uncle and I was the most active Facebook poster in my immediate family.  It was like she wanted in on this particular chapter of family drama– to make a show of caring, probably because she thinks it’s the “Christian” thing to do.  I soon realized that even though she’s my cousin, she doesn’t like me.  And frankly, the feeling is mutual.  If we weren’t relatives, I definitely wouldn’t choose to be friends with her.

There were a couple of other cousins and relatives by marriage I deleted mainly because of a total lack of engagement or a subtle air of disapproval.  They’d become names on a friends list rather than “loved ones”.  A few years ago, I deleted a couple of cousins because they refused to do anything but argue with me about politics.  They weren’t interested in anything else.  Or they’d post smarmy, condescending bullshit about my being “loved and respected” while they proceeded to insult my intelligence. 

For instance, one cousin wanted to know what my master’s degree in public health (with a health administration focus) has to do with knowing how health insurance works.  He insisted that his time as a former life insurance agent meant he knows more about health insurance than I do, despite my having an advanced degree in the subject.  I certainly wouldn’t discount his experience and basic knowledge about how insurance works, since he used to sell it, but why couldn’t he acknowledge that I also have knowledge of the subject?  Maybe he’s just one of those people who thinks college is for chumps.  But you’d think he could at least recognize that I do know something about health insurance.  I didn’t buy my degree from a diploma mill.  My guess is that he sees me as a simple female, which automatically makes me inherently dumber than he is.  

For years, I’ve tried to be a bigger person about this stuff.  I’ve ignored subtle disses from family members.  Except on this blog, I’ve not really acknowledged that no one from my family of origin values any input from me.  I’ve tried to detach from the drama and mostly tried not to take things personally.  I think I’ve finally just gotten to the point at which I’m ready to be done with the stupidity.  Maybe there will be no one at my funeral.  Maybe I won’t even have a funeral. 

It makes me sad to see people with loving family relationships because I don’t really have any myself.  What I’ve had is basically a facade of a loving family.  Underneath that facade is the unspoken message that in order to fit in, I need to change who I am.  I’ve tried to do that and it just leads to major depression and anxiety.  So I’ve decided that the picture below is my new motto.  

Seriously… because a lot of the stuff that pisses me off is stuff that shouldn’t matter.  It’s better to cut bait and be done with it… and them.

I’m done with swallowing criticism from other people, especially those who aren’t even involved in my life.  From now on, I’m going to do what I want to do.  It may mean I’m done with attending all family events, once and for all.  But, I’ve had it.  I live thousands of miles away and it costs a lot of money and time to visit my relatives.  They don’t value my presence in their lives, so fuck them.  I’m going to spend time with people who actually want to spend time with me.  So far, that seems to be mostly Bill and my dogs.    

You probably have to go to YouTube to listen to this, but this song pretty much sums up how I feel today…

And here are the lyrics by James Taylor… a man who knows the trouble I’ve seen.

I was raised up family, man, I’m glad I’m on my own.
I was raised up family, man, I’m glad I’m on my own.
I mean, God bless the child that can learn to live alone, yeah.

Thinking about my cousin, what it was that did him in.
Could it have been that whiskey, rotgut, bootleg, bathtub gin?
It’s like it took a lot of liquor just to let him live in his own skin.

Back in Raleigh, North Carolina, you got to ride it on back in Raleigh, North Carolina.

The ship set down on the shore of this uncharted desert island,
me and my people fanned out, I guess we settled down a little while.
Ah, but the devil came with the dark days of winter, man, the children ran wild.

I used to know why, no, I don’t know why anymore.
I used to know why, no, I don’t know why no more.

I get to wonder at the Kundalini thunder, down under my floor.

You got to ride it on back, take me back.
Back in Raleigh, North Carolina, yeah, do you wanna go?
Way back in Raleigh, North Carolina.

Well… in my case, it’s Natural Bridge, Virginia.  But you get the idea.

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healthcare, mental health, psychology

“Please, Doc, don’t weigh me unless it’s really necessary!”

Yesterday marked the first day of National Eating Disorders Week 2022. Fittingly, a few days ago, I read an interesting article in the Washington Post about a new trend in U.S. healthcare. It involves special cards that one can hand to a physician. See below:

I like this idea.
From the More-Love.org Web site.

I haven’t seen a doctor since 2010. One of the main reasons I don’t visit doctors is because I once had a very traumatic and unnecessarily physically painful and humiliating experience with one. I did see doctors a few times after the traumatic experience, but as I’ve gotten older, it’s gotten even harder to make the phone call for an appointment. I know very well that this isn’t the greatest policy for promoting my personal longevity. I could definitely use a check up. However, for many reasons, visiting medical people causes me a great deal of stress. One of the main reasons it’s stressful is because of that goddamned scale, and my long history with eating disorders. No, I don’t mean the obvious ones that might put a person in the hospital. There are actually a lot of eating disorders out there, and most don’t get diagnosed. But they do exist, and I’ve struggled with them for years. I have less of a problem with them now, mainly because I have a very loving and understanding husband who doesn’t body shame me. I would be lying, though, if I said those problems have gone away entirely. There isn’t a day that goes by that I don’t think about it.

I know I usually have less of a problem going to see a doctor if I know I won’t have to be weighed. For instance, in 1999, I had facial cellulitis that almost put me in the hospital. I had to see an ear, nose, and throat doctor for treatment. He was a great doctor, but one thing that I especially liked about him was that he didn’t force me to get on a scale. He simply looked at the mess on my face and prescribed antibiotics. The family practice doctor who sent me to the ENT guy was kind of an all knower, but he actually reassured me that my weight wasn’t that bad. At that time, it wasn’t that bad, since I was waiting tables and lost a lot of pounds because of that. However, I was never so sick, so often, as I was in those days.

Although I know weight is an important measure for some health issues, I think it’s pretty cool that someone has realized how absolutely mortifying getting on the scale is for some people. The above cards were offered at Element Primary Care in Omaha, Nebraska. A 30 year old woman named Dani Donovan, who is an attention deficit/hyperactivity advocate and suffers from binge eating disorder, happened to see the cards at the office. Donovan reportedly avoids going to see physicians because of the stress of being weighed. She happened to find a practice where, apparently, the staff recognizes this issue, and how it prevents people from seeking care. According to the WaPo article:

“I didn’t even know that saying ‘no’ to being weighed was a thing you could do,” said Donovan, 30, an attention-deficit/hyperactivity disorder advocate who has a binge-eating disorder and often avoided doctor’s appointments because being weighed was so stressful. The card led to a good conversation with her doctor, Donovan said, that helped build trust and make her feel empowered.

Donovan took a photo of one of the cards and posted it on Twitter. It’s caused quite a stir.

These cards were developed in 2019 by a Los Angeles area eating disorder coach named Ginny Jones. Jones is a survivor of several eating disorders, including anorexia and bulimia. Jones came up with the cards after many experiences she had when visiting physicians. A lot of them would praise her for losing weight, even when it was noted in her records that she has had eating disorders. She now offers the cards for sale on her Web site. When Jones was contacted for a statement about her cards, she said:

“I wish I could say I was surprised by the ‘controversy’ around the cards. I created them to address weight stigma, and it’s basically fatphobia to jump to conclusions and say blanketly that asking not to be weighed is unhealthy.”

Personally, I think these cards are great, although I can’t imagine presenting one to any of the military doctors I’ve seen in my lifetime. But then, again, I haven’t been to see a doctor in about 12 years. My blood pressure shoots up whenever I’m in a military healthcare facility, and they usually take one look at me and assume I have any number of health issues just by my appearance. I have found that a lot of doctors aren’t good listeners, either. That is especially true with military providers, in my experience.

In 2007, before we moved to Germany the first time, I actually wore an ambulatory blood pressure monitor for 24 hours to prove that I didn’t have hypertension, because my blood pressure readings were so high in the office. As soon as I stepped out of the military hospital, my blood pressure was completely normal and stayed that way. I came back to the office the next day with a bruised arm and documentation in my file that I have white coat hypertension. That may no longer be true today, given my family history, but the way the providers acted during that last visit put me off of going back, even though the person I saw was actually very kind to me when I told her what had happened to me at the hands of an Air Force gynecologist back in the 1990s.

The Air Force gyno I saw back then gave me my very first (of two in my entire lifetime) gynecological exams. It was so painful and distressing that I left her office traumatized and horrified, and actually felt violated on the level of sexual assault. Besides really hurting me with her instruments and not apologizing for the pain she caused me, this doctor also fat shamed me and predicted that when I went to Armenia, I would gain tons of weight. In the 90s, I was dealing with eating disorders more acutely than I do today. Today, I seem to have replaced eating issues with drinking issues. Again… not healthy, and I probably should see a doctor, but I just can’t bring myself to do it. Even having these cards probably wouldn’t get me into the office, although I do think they would help, if I found a kind and understanding physician who was sensitive to these issues.

According to the Washington Post article, as well as my own anecdotal experience, there are a lot of physicians who have a bias against obesity. They seem to take obese patients less seriously, especially if they’re women. The article reports, “one piece published in the British Medical Journal found that weight stigma actually led to increased mortality and other chronic diseases and ‘most ironically, (weight stigma) actually begets heightened risk of obesity.'” There have been a number of articles about how the medical community tends to focus on weight, even when a medical issue is clearly not related to the patient’s weight. Like, for instance, someone comes in with a broken arm and gets told that weight loss would benefit them. There’s no doubt, weight loss would be beneficial, but that’s not why the person came in to see the doctor. In that sense, I can see how these cards could be useful. If you’re going to see the doctor for a specific issue that has nothing to do with obesity, perhaps it wouldn’t be a bad thing to skip the scale, at least for that visit.

Of course, some physicians will never be onboard with avoiding weigh-ins. In the WaPo article, a physician named “Umbereen S. Nehal, a former chief medical officer for Community Healthcare Network in New York and a board-certified pediatrician,” reported that she strongly believes patients must “be weighed every time, regardless of when they were last weighed or why they are in the doctor’s office.” The doctor claims to be have sympathy for patients like Donovan, but she’s not convinced that avoiding the scale will improve healthcare outcomes. She says, “Is the hypothesis that somebody who is obese, let’s say, if we don’t weigh them, fatphobia will go away? Those visual cues will not go away. So my beef with this is that it disrupts processes in the system for efficient data collection and that data are used for a variety of things.”

My answer to Dr. Nehal is that a lot of people avoid the doctor entirely because of this issue. She may be getting more data when she weighs patients at every visit, but a lot of people won’t even come see her because of the mortifying prospect of being weighed, the psychological stresses that come from that experience, as well as the potential humiliation that comes from a fat shaming doctor. Seriously… if you’re feeling fine, and you don’t want to deal with the discomfort of being weighed, how likely are you to schedule screenings? Is that the outcome Dr. Nehal wants? For people not to come in to see her at all? Then she won’t get ANY data, and the person will show up in the emergency room instead. And that will not only lead to poorer healthcare outcomes, but it will also lead to much higher medical bills.

Another doctor who was quoted in the article, Fatima Cody Stanford, an internist who specializes in obesity medicine, also insists that weight is an important measure. She notes that U.S. medical schools do a terrible job teaching students about weight, and that many people don’t visit their doctors very often. Stanford says she would tweak the card to something that says:

“I’m happy to get weighed but please do not provide any negative or derogatory comments associated with my weight.”

That way, the doctor gets their data, and the patient doesn’t have to deal with fat shaming. I would add, though, that in my case, it would not be true that I am “happy to get weighed”. I hate being weighed every time. It causes me a lot of distress, and that’s why I avoid doctors unless I’m about to croak. So I think Dr. Stanford might want to rethink that wording, although I appreciate that she recognizes how upsetting being weighed is for some patients.

I looked at Element Primary Care’s Web site, and it appears that their approach to care is different on many levels. For instance, I notice they offer telemedicine appointments, focus on keeping their practice small, and it appears that instead of using a traditional insurance model, they provide care for a monthly fee. This eliminates co-pays and insurance deductibles, and allows patients to access care when they need it. The direct primary care membership plan can be combined with a high deductible/less expensive insurance plan which would cover hospital care or other unforeseen care needs that still use the traditional insurance model. I have heard of a growing number physicians’ practices eschewing traditional insurance coverage, which allows them to be able to make medical decisions that don’t have to go through third parties at insurance companies. I think it’s a great idea, although it will probably take some time for it to catch on nationwide. Change can be slow, but I do think overhauling our health insurance model could be a game changer for a lot of people.

At Element Primary Care, about half of the patients decline to be weighed, but some will weigh themselves at home and report their weight that way. Or, if they have a condition that requires their weight to be monitored, the patient can turn backwards on the scale, which is how many eating disorder patients get treated. That way, they don’t have to know that number, and it won’t affect their psyche. The cards allow the patients to advocate for themselves and be more of team member in their healthcare. It may also make them feel “safer” from judgment and humiliation. Personally, I don’t weigh myself at all anymore, and when I have gone to see the doctor, I don’t let them tell me how much I weigh. I know from personal experience that knowing the number can lead to distress.

I think the pandemic has caused a lot of issues with weight and mental health. I recently read that a number of young people have developed eating disorders during the pandemic. Even President Biden is addressing it, which is very fitting, since National Eating Disorders Awareness Week begins today. Kudos to Mr. Biden for bringing this up, since I know Trump doesn’t care about helping people with eating disorders. I recently read that doctors are seeing a lot of adolescents in emergency rooms, dealing with eating disorders. There’s also a lot of depression and anxiety being reported, due to the pandemic. I think any measure that makes seeking help easier is commendable.

While it may not always be medically appropriate to skip stepping on the scale, I like the fact that some healthcare professionals are noticing and addressing this issue. And I think it’s amazing that some people are empowering themselves by presenting these cards, although I would not be surprised if some people get lectured by their doctors for not being weighed. I would like to see less lectures from doctors as a general rule. People need to take ownership for their own health, and physicians need to stop seeing patients as people who need to be given orders or lectures about taking care of themselves. Especially if they are competent adults.

Anyway… I probably won’t be going to see a doctor anytime soon, and in fact, I hope I don’t live to be super old. I think it’s overrated. But I definitely think the cards are kind of cool, even if I’m sure they don’t always go over too well with more traditional physicians. I know that if I had given one to my ex psychiatrist, for instance, he probably would have laughed me out of his office. And he never weighed me once– but he did fat shame me quite a few times before I told him to stop. He also gave me a prescription for Topamax off label, hoping it would slim me down. Is it any wonder why I hate seeing doctors?

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