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….

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blog news, book reviews, celebrities, LDS, mental health

Then again, maybe I won’t… at least not today.

At the end of yesterday’s post, I shared two videos by Mr. Atheist. On those videos, Jimmy Snow, aka Mr. Atheist, reacted to videos put out by anti-abortion activist, Kristan Hawkins. I watched the videos and cringed pretty hard. I thought maybe I would offer my own thoughts on them today, but I think that maybe I’ll postpone that plan. I had written I would comment on them if people were interested. It seems that no one was… or, at least no one is at this point in time. And frankly, I just don’t feel like writing about Kristan Hawkins today. I don’t think I can stomach listening to her talk about why abortions should be outlawed in all cases. Besides, Jimmy already does a pretty good job of explaining why Kristan’s opinions are wrong.

Nope. Today, I think I’d rather write about the book I’m reading right now. I’m finding it much more compelling than I did my previous book, The Case for Heaven, which really didn’t interest me much at all. I was glad to finish Lee Strobel’s book about what comes after death. I moved on to my favorite type of book– a celebrity memoir. I’m currently reading Jennette McCurdy’s new book, I’m Glad My Mom Died. The title alone is very compelling, isn’t it? You just KNOW there’s gonna be a trainwreck.

Meet Jennette McCurdy… she is fascinating.

I’m not quite ready to review this book yet, as I’m only about halfway through it. What I will say for now is that Jennette McCurdy’s story reminds me a little of Melissa Francis’s book, Diary of a Stage Mother’s Daughter: A Memoir. Melissa Francis is, of course, much older than Jennette McCurdy is, but the two have a lot in common. They both suffered stage mothers from hell. Both were actresses, not necessarily because they wanted to be, but because their mothers wanted them to be. Both suffered extreme abuse on all levels. I think Melissa’s mom was more sadistic, while Jennette’s mom was more manipulative and emotionally abusive. Also, to my knowledge, Melissa’s mom is still living, while Jennette’s mom succumbed to breast cancer in 2013.

Before I bought her book, I didn’t even know who Jennette McCurdy is. I’m well beyond the years of watching new Nickelodeon shows– not that the show she was famous for is all that new anymore. Jennette was on iCarly, but she also did guest roles on other shows, commercials, and other stuff. McCurdy’s story is also interesting to me because, besides being raised LDS, she also had problems with eating disorders (which her mother enthusiastically encouraged), anxiety, and obsessive compulsive disorder. The chapters are very short, so even though I’m only halfway through the book, I’ve already gotten to chapter 44 or so. And each chapter is more shocking than the last, as McCurdy shares the sheer nuttiness of her mother, the craziness of being a child actress, her mental health issues, and the religion aspect that complicates everything. The crazy thing is, she NEVER even wanted to be an actress. She just happens to have a talent for acting, and her narcissistic mother exploited it to the hilt.

I have never been LDS myself, but Bill was LDS for awhile. His daughter is still a very active church member, and the LDS church– which was Ex’s idea– has had an impact on my life. I know a lot about the church, its practices, and what its members believe. However, I have never been a member, nor would I ever be one. McCurdy seems to have gotten a lot of comfort from church when she was growing up. I relate to that, because I know Bill’s daughter has also gotten comfort from the church when things were especially crazy as she was growing up. In some ways, I also see a lot of similarities between the way Ex behaves, and the way Jennette’s mother did. She is extremely manipulative, possessive, controlling, and just plain weird. But I’ll get more into that when I review the book, which at the rate I’m going, should be within the next few days. I’m finding the book a real page turner, but in kind of a trainwreck sort of way. I’m simultaneously fascinated by the story and horrified by what this poor young woman had to cope with when she was a child.

I know some people will take issue with the title… It sounds horrible. However, I can totally understand why she used that title. Her mother sounds like she was true nightmare to have to deal with. For just an example– imagine your mother sending you dozens of emails, text messages, and voice messages after she’s seen pictures of you on TMZ, taken by a paparazzo. You are an adult, in Hawaii with your boyfriend, but you feel you have to lie to your mother about where you are. You come up with a ruse to trick her, only to have it foiled by a photographer, hungry for a sale. Your mom sends you all manner of abuse, accusing you of giving her cancer, bringing her shame, and calling you things like “filthy whore” and “all used up”. Then, as she signs off with “love”, she adds a P.S.– “Please send money for a fridge. Ours broke, and the yogurt is going sour.”

Imagine your mother explaining how to engage in eating disordered behaviors when you’re still a child, in the midst of becoming a woman. Imagine being fourteen years old and still sitting in a booster seat in the car. Imagine your mother insisting on showering you when you’re sixteen, sometimes also with your brother; her excuse is that she’s a former beautician and wants to make sure you wash your hair “correctly”, so it will impress a casting director. Imagine your mom using your money to pay the mortgage, and being forced to sleep on a mat in the dining room, because the bed you purchased for yourself is covered in your mother’s miscellaneous crap.

I know that Melissa Francis and Jennette McCurdy aren’t the only ones with stage mothers from hell. Wil Wheaton has also spoken openly about his own abusive, money hungry, fame whoring parents, who forced him to act when he didn’t want to do it. I’ll probably read his book next, since it’s been in the queue for awhile, and it will probably dovetail nicely with I’m Glad My Mom Died. I love a good tell all memoir, especially when it involves questionable parenting. Shirley MacLaine’s daughter, Sachi Parker, wrote a pretty good one some years ago. It seems the kids who grew up in show business had it the worst, especially in the days before child welfare advocacy was less of a thing than it is today. If a parent was also a celebrity, then the chances for massive dysfunction go up exponentially. Christina Crawford started it when she wrote Mommie Dearest, but there have been some real whoppers since her book was published in 1978. Gary Crosby wrote a pretty shocking book, too.

Anyway… I am looking forward to finishing the book and writing a review of it. I think it will be interesting on many levels to several of my regular readers, as well as new ones who haven’t found my blog yet. So stay tuned. I’ll sign off now and get back to reading.

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mental health, psychology, social media

You just never know what someone is going through in life…

Today’s post is about suicide. If you think that will trigger you, please move on to the next Internet station.

Over the twenty years I’ve been in Bill’s life, he’s repeatedly told me stories about his friends from high school, and how they helped him through that time in his life. Bill owes his career, in part, to his high school days. At his mother’s insistence, Bill joined Army JROTC (Junior Reserve Officer Training Corps), and flourished as a cadet. He had grown up without consistent access to his father, so being in the JROTC helped him immensely, by providing him with positive male role models.

Unfortunately, Ex was also enrolled in JROTC, and that was how and where she and Bill met. She later tracked Bill down when he was in Germany the first time, and managed to marry him. We all know how that turned out. 😉 But in spite of the connection with Ex, JROTC was also a place where Bill met some great kids, most of them guys who were a lot of fun. His friend Mark, who committed suicide last month, was among them.

I wrote about Mark last month, even though I never had the chance to meet him. I was the one who told Bill about Mark’s death, as another one of Bill’s friends, who also “friended” me on Facebook, had announced it. Bill was really shocked by the news. He watched as his friends posted their reactions to Mark’s death, and their memories of knowing him. I felt sad for Mark’s friends and family members. Even though a number of them admitted that Mark had “demons”, they all had wonderful things to write about him. And even though they weren’t necessarily people who knew each other, they all shared in the commonality of knowing and loving this man who had violently left life on his own terms.

Sometimes, these things tend to happen in threes. When I initially wrote about Mark, I included some commentary about my cousin’s wife, who, in April, passed away of cancer. In another post, I also included some words about a guy I knew when I was in high school, who also had cancer and died on March 31st, having just turned 50 years old. I will be 50 next month, and I have been worrying a bit about my own health, lately. I have significant issues seeing doctors. So, although I’m sure I will need to pay a visit to one at some point, I’m having some trouble doing it. What makes things harder is when I hear or read about someone who commits suicide. Especially when they are presumably young and healthy. It makes me wonder what the point is of seeing doctors.

This morning, I’m realizing that the three deaths I thought had comprised that old adage of deaths happening in threes, actually weren’t that at all. Because since I wrote that post in mid April, two more people who have somehow affected my life have committed suicide. One of the people I’m referring to is country star, Naomi Judd, who abruptly ended her life on April 30th. Naomi’s death was tragic and shocking on many levels, but at least she’d lived a pretty full life. She didn’t live as long as she was physically able to, but she did live until an age at which a lot of people die for reasons other than suicide.

I wrote about Naomi, although I’m sure I’m not as affected by her passing as some people have been. I enjoy her music, and as a fellow human being who has experienced depression and anxiety, I have great empathy for the suffering she must have experienced to cause her to make such a decision. But this morning, I read an article on People.com about a man who spent some of Naomi’s last hours with her as they sat next to each other on a 90 minute connecting flight to Chicago. Strickland explained that Naomi “never met a stranger” and would talk to anyone.

At first, the man she sat next to on her last plane ride hadn’t realized she was famous. But they got to talking during that short flight, and Naomi had made a real impression on him. When he got news of Naomi’s death, he decided to reach out to her equally famous family via email. To my great surprise, I was feeling a bit choked up as I read about the man’s kind message to Naomi’s widower, Larry Strickland, who had been so concerned about Naomi flying alone. According to the People.com article:

“It’s a small comfort, I’m sure, but my life seems a lot richer after meeting your wife, however briefly,” continued the note, which visibly sparked an emotional response from Strickland onstage. 

“Obviously, I didn’t know Naomi at all, but I can tell you she spoke highly and warmly of you, and the life you shared together,” read the heartfelt email, which Strickland recited while choking up. “Rest assured she loved you and had no qualms about telling me, a stranger on a plane, that was so.”

The man concluded his letter by telling Strickland about the “measure and impact” his late wife left on him during the brief time they spent together, and Strickland told the audience the message provided “great, great pleasure and comfort to me.”

What a great gift this stranger gave to Larry Strickland. It’s a reminder to everyone that famous people are no different than non-famous people. I’ve thought about Naomi a lot, lately, but I am so glad that her husband was able to be comforted by a stranger’s loving message to him.

Now comes the part of this post when I write about third suicide that has sort of affected me on some level. It’s a convoluted story, so bear with me, and keep in mind that this is simply from my perspective. Other people, I’m sure, have different perspectives. This is just my version of the truth.

Some readers– especially those who remember my original OH blog– might recall that in 2019, I abruptly moved my blog from Blogger to WordPress. I made that decision for a couple of reasons. I had actually wanted to move the blog for awhile, since Blogger isn’t the most professional or functional blogging platform out there. But I put off moving the blog, because I knew it would be inconvenient, and I’d have to start over from scratch. I finally moved it when it became clear that the old blog was becoming a liability. I had some readers who weren’t friendly to me, and they were stirring up trouble. I needed the extra security and functionality that WordPress offers.

I was legitimately shaken by the actions of this woman I had perceived was “stalking” me, and was in cahoots with our former landlady. I’ll call her “Jodi”, though that’s nowhere close to her real name. She had lived in our previous house immediately before us. She and her husband had left ex landlady’s house in September 2014, which was about halfway through their stint in Germany. Since they were still living in the community, and back then, I was sharing my travel blog in the local Facebook groups, Jodi started following me. Because the travel blog was also on Blogger, it was easy for her to find my rawer original OH blog. She decided to follow that blog, too, which probably led her to make some erroneous negative assumptions about me, and my character.

Perhaps because she was feeling curious, or maybe even a little guilty about moving out of ex landlady’s house, Jodi was regularly monitoring my blogs, even though she’d left Germany in 2016, or so. Occasionally, she would leave me “friendly” comments, always with a fake name. At first, the comments were nice, but then when I started having trouble with former landlady, she would leave comments that were shaming or chastising. One time, she asked me to edit something I had written that she was uncomfortable with, since she claimed it had wrongly implicated her. Basically, I had wondered why she and her husband had moved out of that house halfway through their tour in Germany. She had told us that she thought of the ex landlady and her husband as parents to her, and claimed they were wonderful people. And yet, she had to move. The story she told me was one that didn’t ring true to me, based on my experiences with the Army. Jodi insisted that she’d told us the truth… but I still had my doubts. I wasn’t born yesterday.

Jodi was “buddies” with our ex landlady, and in February 2019, a few months after Bill and I had vacated our previous house, she sent me a private Facebook message that really upset me. I had already blocked her on social media before I even saw the message, so when I finally discovered it on my Facebook page for this blog, she showed up as “Facebook User”. In that post, she chastised me for a new fiction blog I was starting. She’d read my initial posts on the fiction blog and mistakenly believed that I was going to write a “hatchet piece” about our former landlady’s daughter. She wrote that ex landlady’s daughter read my blog regularly and would be offended. Then she implied that I’m “crazy” and begged me not to “harass” the ex landlady by writing about her.

Now… the fact is, I have NEVER met our ex landlady’s daughters. Putting it lightly, ex landlady and I definitely weren’t friends, and I don’t think she would have condescended to introduce me to her family members, other than her husband. I didn’t even know her daughters’ names, and had not so much as been in their presence. I’m sure Jodi wouldn’t have believed me if I told her that, because I think she was wholly convinced that I’m a mean, unhinged, person who lies. You can say a lot of things about me, but I am generally a truthful person. I’ve written a lot of negative stuff about Ex, for instance, but now that I corroborate my posts with actual evidence, you can see where my posts are coming from. I may express things that are “ugly” and negative, but by and large, I am truthful.

One time, Bill met one of the landlady’s daughters, and he was impressed by her. He said she was very bright and articulate. She had a physical condition that made her different, but Bill did not mention this condition to me. The first paragraphs of my now deleted short story included a description of a character that had a physical condition similar to that of the ex landlady’s daughter’s. Naturally, “Jodi” read it, assumed that I was going to write a mean spirited story about her friend, and decided to pre-emptively stop me before I caused offense. However, writing a mean story about this woman I’d never even met hadn’t been my plan at all, and she hadn’t given me a chance to develop the character to what I had envisioned. I also didn’t know that Jodi had been sharing my blog with our ex landlady’s daughter, and probably ex landlady herself. It pissed me off that she was so concerned about her privacy, but had no regard for mine, even though my blog is, admittedly, public.

In her message to me, Jodi wrote I didn’t have the right to create a fiction story inspired by people in my life (from where did she think authors get their inspirations?) She implied that I’m a “hack”, and “begged” me not to drag her friends through the proverbial mud, even though they had treated us unfairly, and she had even corroborated some of my complaints in comments left on my blog (most of which she later deleted). Jodi’s false accusations, erroneous assumptions, and continuous meddling in what was my business, really made me angry with her. I felt violated and misunderstood by someone I had met in person only twice. It caused a lot of psychological angst, and I was very pissed. Some of my earliest posts in this rehashed blog spell that out.

It never seemed to occur to Jodi that I’m not a total shit. I would not have written a snarky story on the level that she was assuming. Even though I did write a few snarky fiction story posts in my original blog that had characters inspired by real people who bugged me, some of my characters are neutral, or even positive. The character she’d clued in on was going to be one of those, and was not actually based on ex landlady’s daughter. Above all, it was clearly FICTION, and very few people even bother to read my fiction.

The vast majority of readers of my blog aren’t at all connected with the military. Even if I had written a mean fiction story about people we both knew, most people reading wouldn’t be any the wiser. I figured that if my fiction bothered Jodi and her friends, they could exercise some self-discipline and find something else to read on another site. But, because we were planning to sue the ex landlady for illegally withholding our deposit, I decided to delete the fiction blog after only a couple of days. I had intended to restart it at some point, but just couldn’t find the heart to do it after Jodi’s meddling. Her actions really did some damage to me, although I’m sure she never thought about that, and likely didn’t even care. She didn’t seem to have much respect for me, and clearly expressed that she didn’t think of me as a “real” writer. I had also noticed some hits coming from places where she had family. I had a feeling some of them were watching my blog, too, and that made me feel kind of paranoid, even though most of what I write should have been of little to no concern to them.

For the past few years, I’ve had Jodi blocked on Facebook. I didn’t look her up, especially since I knew that she was very concerned about her privacy on the Internet. I really just wanted to forget about the whole incident involving my blog, as well as her seemingly shady behavior involving our previous house. However, since moving back to the States, Jodi had gotten a job with Bill’s company, and he’d noticed her on the company’s email list. A few days ago, he told me that she was no longer on the roster. She also wasn’t listed as a government employee.

That seemed strange to me, since I knew she was very much into her career and she seemed to be on an upward trajectory. But I just chalked it up to her moving on. I never looked her up online, because I knew she kept a low profile. I just wanted to forget about her, and how she’d made me feel. But, sometimes I get into trouble when I get bored. Sunday afternoon, I finally did a cursory search of Jodi’s name. I didn’t expect to find anything. Imagine my surprise when I immediately saw an obituary for her, along with a video of her memorial service, which took place several months ago.

I called Bill over and said, “I just found out why Jodi is no longer listed as an employee at your company.”

Bill was curious, so I showed him her obituary, which listed her at just 34 years of age. The obituary made it sound like she’d had a very full and vibrant life. Naturally, we were curious about what happened. I unblocked Jodi’s Facebook profile, and eventually found out that she, too, had committed suicide.

Let me just say this, in case anyone who knows “Jodi” happens to be reading this. I am truly very sorry for your loss. No matter what I might have thought of Jodi and her actions toward me, I know there were people in her life who loved her very much and are devastated by her decision to commit suicide. I am especially sorry for her two children, who are still so young. Losing their mother at such a young age will affect them forever. All I can do is offer a sincere prayer that they will have as much peace as they can possibly have, under these circumstances.

After I discovered Jodi’s cause of death, I realized that she and I had some things in common besides the Army, living in Germany, and having had the same landlady. When I was growing up, I was a horse enthusiast, like Jodi was. I had a horse and worked at a barn to help pay for his upkeep. Jodi was a barrel racer, but my discipline was hunt seat. I spent my high school years showing my horse and going to fox hunts and competitive trail rides. I gave up my horse when I went to college, although I would have loved to have brought him with me to school. To this day, I miss having horses in my life.

Jodi was an animal lover, as I am. She had a cute little dachshund, whom I met when Bill and I toured the house we rented after her. I am a hound lover too, although mine have mostly been beagles.

I like to travel, just as she did. That’s why we moved back to Germany. I had remembered Germany as a beautiful place, and wanted to come back here to live for a year or two. I never thought we’d be here for as long as we have. I swear, when Bill and I met Jodi and ex landlady in 2014, all we were looking for was a place to live after a very rough summer. We weren’t trying to make trouble for anyone. But then, writers who don’t sometimes stir up controversy are often pretty boring and unsuccessful. No matter what Jodi thought of what I do, I am a writer. And yes, I have actually been paid to write.

Just like Jodi, I have also struggled with mental health issues. I was treated for depression and anxiety for several years, and I have felt suicidal at times, although obviously I haven’t yet committed to the idea. I haven’t been on antidepressants since my early 30s, but there are times when I think I would be better off with some chemical assistance for my moods. But again… I don’t like visiting doctors.

Jodi’s loved ones have posted many pictures of her doing things she loved, living in beautiful places, and reaching for her goals. I haven’t got the foggiest idea why she decided that suicide was an appropriate solution for her problems. I won’t even try to guess. I just feel compassion for those left behind… and yes, that includes ex landlady and her daughter, whom I know were her friends. I hope Jodi has found peace. I wish we could have had a mature discussion, so that the whole mess and the misunderstandings with my blog could have been avoided.

You just never know what’s going on in someone’s life. I had no idea that Jodi was troubled in any way. She seemed like a person who had everything going for her. Clearly, some things weren’t going right, in spite of her facade. Wherever she is now, I hope she’s out of pain.

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family, money, musings, work

Repost: You’ll never make more than minimum wage…

Here’s a repost from January 16, 2016. I am reposting it because it sort of relates to today’s fresh content, right down to my sharing of Ron Block’s beautiful song, “Someone”.

Today’s post is going to be some personal, self-indulgent, introspective drivel that may not interest everyone…  apologies in advance.

Yesterday, a guy I used to work with who is now a Facebook friend posted a tribute to a retired Air Force colonel who recently died.  The colonel, whose name was Luke, had been a manager at the restaurant in Williamsburg, Virginia where my friend and I used to work.  I never knew Luke, but I heard many stories about him.  He was one of those people who became legendary everywhere he went. 

My friend’s tribute to Luke was very moving and inspiring.  Luke knew my friend when he was very young and broke.  He stood up for my friend when others were against him.  He helped him become who he is today.  Luke was a few years younger than my dad and may have even run in the same circles with him a time or two.  He retired from the Air Force six years after my dad did; but he was a full colonel, while my dad retired as a lieutenant colonel.

The restaurant where my friend and I used to work was notorious in Williamsburg.  It had a great reputation as a place to eat, and a horrible reputation as a place to work.  The chef, who was also one of the owners, was rather famous because he’d been on television and written a lot of cookbooks.  He was also a Marine.  Having worked in his restaurant, I definitely picked up the military style that was used there to keep things running.  That didn’t mean there wasn’t chaos from time to time.  In fact, when I worked at that restaurant, my life felt like it was totally chaotic.  I was suffering from depression and anxiety and felt like I’d never amount to anything.  At that time, I was also living with my parents.  I was in my mid 20s and had a college degree and international work experience.  But I still felt like a big loser and was unable to find work that would help me launch. 

I remember the day in March 1998 that I decided to apply to work at that restaurant.  I’d had a huge fight with my father.  He told me he thought I was a very arrogant person and that I’d never succeed at anything in life.  He said, “You’ll never make more than minimum wage!”  At the same time, he and my mother were putting tremendous pressure on me to move out on my own.  I was paralyzed by depression and anxiety at the time, and their demands made me feel panicky, helpless, and hopeless.  I was also very angry about a lot of things, particularly that my parents seemed to be ashamed of me and didn’t seem to recognize that I really was trying to become a full fledged adult.

Immediately prior to working at the restaurant, I had been temping at the College of William & Mary.  I was there for several weeks, working in their admissions office, as well as several other places on campus.  I spent the longest time at the admissions office, where I filed away report cards, SAT scores, personal essays, and all of the other stuff hopeful high school kids sent with their bids to achieve admittance.  Having worked in the admissions office and in other places around the campus, I could see why people wanted to go there.  It’s an excellent and prestigious school.  Looking at all the stellar academic records and flawless personal statements written by potential students, I felt a bit sad for myself.  I was a college graduate working as a temp, filing endless reams of papers.  It was mind numbing work that didn’t pay well.

My sister is a William & Mary graduate.  She’s done very well for herself.  They never would have accepted me.  I didn’t measure up to my sister’s greatness, although I do have some things in common with her.  We are both returned Peace Corps Volunteers; we both have advanced degrees in public health; and we both worked at that same restaurant in Williamsburg.  She worked there when it first opened, and I worked there eighteen years later, when I decided I would make more than minimum wage and get on with my life. 

I remember being very determined on that day in March when I applied for the job at the restaurant.  It was my first time waiting tables, though I had worked with food in other capacities.  I had even been a cook.  I enjoyed working with food and thought I could be successful.  It also wasn’t lost on me that the skills one learns waiting tables can be applied to many of life’s trials.

As I sat for the interview, I thought of my dad and how pissed off he made me… and how much I wanted to get out from under his thumb.  It was my second attempt at getting a job at that restaurant.  I didn’t mention my initial unsuccessful attempt to the captain or the manager who interviewed me.  I knew if I got hired, I’d make money and be able to get away from my dad and his belittling comments.  I would someday prove myself.  I set my mind to it and got the job.  I’m still friends with the man who hired me.

Working at that restaurant was one of the most difficult experiences of my life.  It was even harder than being a Peace Corps Volunteer.  The work itself was very demanding and stressful.  It was physically and mentally challenging.  I remember coming in every day, when I first started working there, and feeling like I was going to throw up.  I lost a lot of weight and learned how to wait tables.  I made good money.  I was also sick a lot during those 18 months.  I saw a lot of people quit and a lot of people get fired.  I was incompetent as hell at first and worried that I, too, would get fired.  One time, I accidentally spilled beer on a customer.  My dad sneered when he heard about it and asked if I still had a job.  I did.  I learned that if you were reliable, worked hard, and were honest, you wouldn’t get fired.  And eventually, I became competent and even good at the job.   

I was promoted a couple of times and made enough money to cover all my bills.  Living with my parents allowed me to save up for the next step I needed to take.  I sought help for the anxiety and depression I had been suffering from my whole life.  That process, too, was very difficult for me.  I came to some tough realizations about people I cared about and trusted.  After a brush with insanity and suicidal ideation, I finally felt a lot better and made the decision to go back to school. I took the GRE and applied to graduate school and was accepted.  I haven’t had to look back.  It was my final escape from Gloucester County after several dramatic attempts, one of which being my decision to join the Peace Corps.

Going back to school was a life changing experience for me… as much as the Peace Corps was.  But, I have to admit, working at that restaurant with people who knew and loved Luke, was equally earth shattering in the grand scheme of things.  I never knew Luke, but seventeen years after quitting, I am still friends with many of the people I knew in the late 90s when I was working at that job.  I have read their tributes and comments about Luke.  I can see that they all think of him as a comrade or even family…  Maybe they even think of me that way.  I hated the job when I was doing it, but now I’m honored to be in that group of people.  We were the ones who didn’t quit and had achieved some success.

This morning over breakfast, I was talking to Bill about all this stuff on my mind.  I remembered how my dad had told me I’d never make more than minimum wage and would ultimately amount to nothing.  Back then, that comment was devastating to me.  I was in my 20s, and unsure of what to do with my life.  I felt like I was really struggling, even though others surely struggled more than I ever have.  I kept doing all of these things that I thought would help me succeed, yet nothing seemed to lead anywhere.  But now I think of my friend who wrote the tribute to Luke; he actually slept outside a couple of nights because he lived far so away from the restaurant and had to take buses to and from work.  He’d missed the last one and couldn’t afford a motel.  He did what he had to do to succeed in the job and survived.  Now he’s thriving, living in Washington, DC and enjoying what appears to be a very good life.

Thanks to my parents, I never had to sleep outside.  But I felt like I was never going to launch.  Now, I look back on what my dad said and realize that he had no reason to be ashamed of me.  While I may not be the highest achieving person on the planet, I’ve done alright.  And I have made more than minimum wage more than once.  Maybe I didn’t end up being as successful and awesome as my sisters have, but at least I found someone to love, who loves me back.  I haven’t done anything really shameful or embarrassing.  In fact, aside from being overeducated and too fat for my Dad’s tastes, I’m even living an enviable life.  Maybe that was part of his problem with me.  Maybe he felt like I didn’t deserve what I have.  He probably thought I wasn’t living up to his idea of what my potential was… or maybe he was just projecting some of his psychic shit on me.  Who knows? 

Anyway, though I can’t say working at that restaurant was a whole lot of fun most of the time, I did learn a lot and met some fine people.  The skills I picked up have served me well in life.  In fact, I’d say in many significant ways, I ended up rather rich.  Reading my friend’s tribute to Luke made me realize something important.  Ripple effects can be positive.  Luke inspired and influenced my friend and my friend, in turn, inspired and influenced me.  I’d say that’s worth as much or more than minimum wage.  And I don’t have to be “someone” to be worthwhile.

This isn’t the way I feel about my dad, but it is kind of how I feel about success…  This song is called “Someone”.  It’s by Ron Block, a musician who has earned my admiration and gratitude.  The words are very wise and meaningful to me.  I think this song could be a theme for my life. (And at the time I wrote this post, Ron hadn’t shared a video of “Someone”, so I made one myself.)

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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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