Tag Archives: Amy Silverstein

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
book reviews, healthcare

A review of Amy Silverstein’s My Glory Was I Had Such Friends: A Memoir…

On April 18 of this year, the New York Times ran a beautifully written op-ed by the author, Amy Silverstein. I knew who Amy Silverstein was, because about 15 years ago, I read her amazing book, Sick Girl, which she published in 2007. Reading Sick Girl was life changing for me. At the time, we were living in Germany the first time, and I had ordered the hard copy of the book, because I didn’t own a Kindle. I’m not even sure if Kindles existed at that time. I think I decided to buy Silverstein’s book about her experiences as a heart transplant recipient after reading a review of Sick Girl in People. I love books about real life health crises… or, at least I used to love them when I was younger and the crises seemed less like something I might experience personally.

I read Sick Girl in 2008 and reviewed it for Epinions.com. I reposted my review here, combining it with another review I wrote about a book called Change of Heart, which was written by Claire Sylvia, another transplant recipient. The two books were very striking to me, as they had such different moods to them. Claire Sylvia’s book about being a double transplant recipient (heart and lung) was overwhelmingly positive and grateful. After she wrote her book, Claire Sylvia went on to also receive a kidney transplant. She died August 19, 2009, 21 years after her heart and lung transplant.

Amy Silverstein’s book, Sick Girl, by contrast, was a lot more negative and honest. Silverstein wrote a no holds barred account of what it actually means to be a transplant recipient. She received her first heart in 1988, when as a 25 year old law student, she had health problems that revealed a congenital heart defect. In Sick Girl, Silverstein explained that many people believe that organ transplants are miraculous cures for people whose organs fail. But really, organ transplants just trade one health problem for another, as recipients have to take medications that keep their immune systems from destroying the foreign organs. Amy Silverstein had a life expectancy of about ten years in 1988, after she accepted a heart belonging to a 13 year old girl who happened to die in an accident at just the right time to save Amy’s life.

In 2007, when Sick Girl was published, Amy had already defied her doctors’ expectations for her survival by an additional ten years. But even though she’d had 19 years, when she was expected to only have ten, and even though she’d become a wife and adopted her son, Casey, Amy had seriously contemplated suicide. She was tired of being a “sick girl”. In 2005, when Amy was thinking about taking her own life, she was fixated on how difficult the regime was, and how she didn’t want to live that way anymore.

When I read Amy’s book, written a couple of years after she had those suicidal feelings, I empathized. I could totally understand why she was so tired of being sick and tired all the time. She had to submit to a grueling regime that included procedures like heart biopsies, and taking medications that made her throw up and put her at risk for every virus in the atmosphere. A simple cold could leave her bedridden for weeks. And people didn’t understand what it was like for her and made clueless comments that were infuriating in their innocence… and ignorance. So she wrote her book to educate the masses.

Not everyone liked Sick Girl. A lot of people thought Amy Silverstein was ungrateful and unpleasant. Some people found her whiny and self-absorbed. Quite a few folks seem to believe that anyone who gets an organ transplant should shut up and be eternally grateful, even if they are constantly sick and having to see doctors for painful, invasive, and expensive treatments and screenings. I, for one, heartily disagree, because if no one ever complained about the experience of having transplanted organs, scientists and doctors would never know what to improve about the experience for future patients. Moreover, I don’t think that just because someone gets a new lease on life, they should be expected to just shut up and act happy. I also don’t believe Amy Silverstein was ungrateful.

Amy’s first heart lasted an astonishing 24 years, before it started to fail due to the ravages of her immune system, antibodies that her body developed to attack the heart, and the many powerful anti-rejection drugs she had to take to stay alive. She needed another heart transplant, but having undergone one already and knowing what receiving a second heart would mean for her, Amy Silverstein hesitated. But then she got by with a little help from her friends.

***

In 2017, Amy Silverstein wrote another book, titled My Glory Was I Had Such Friends: A Memoir. I downloaded the book in September 2020, but never got around to reading it until this month. I read it after reading Amy Silverstein’s obituary in The New York Times, which appeared just a few weeks after her lovely essay, titled “My Transplanted Heart and I Will Die Soon”, appeared in mid April. In the essay, Silverstein wrote that she had taken excellent care of her second heart, which she received in 2012. However, because of the drugs she had taken since 1988, Amy developed several types of cancer. From the op-ed:

Organ transplantation is mired in stagnant science and antiquated, imprecise medicine that fails patients and organ donors. And I understand the irony of an incredibly successful and fortunate two-time heart transplant recipient making this case, but my longevity also provides me with a unique vantage point. Standing on the edge of death now, I feel compelled to use my experience in the transplant trenches to illuminate and challenge the status quo.

Over the last almost four decades a toxic triad of immunosuppressive medicines — calcineurin inhibitors, antimetabolites, steroids — has remained essentially the same with limited exceptions. These transplant drugs (which must be taken once or twice daily for life, since rejection is an ongoing risk and the immune system will always regard a donor organ as a foreign invader) cause secondary diseases and dangerous conditions, including diabetes, uncontrollable high blood pressure, kidney damage and failure, serious infections and cancers. The negative impact on recipients is not offset by effectiveness: the current transplant medicine regimen does not work well over time to protect donor organs from immune attack and destruction.

After I read the New York Times op-ed in April, I remembered that I had downloaded Amy Silverstein’s second book about her second heart transplant, and how her friends had helped her (and her husband, Scott) through the experience. I made a mental note to read that book, but didn’t get to it until I read Amy’s obituary, which ran in the New York Times on May 16, 2023. Amy died on May 5, 2023. Two weeks after reading about her death, I’ve finished reading My Glory Was I Had Such Friends. Once again, I’m left very moved and better educated about organ transplants than I was before I read the book.

Although Amy’s op-ed indicates that transplant science hasn’t changed a lot since the late 80s, when she received her first heart, her second book indicates that things have actually changed somewhat. Because of her unusual circumstances, and the fact that she’d had her first heart for so long, Amy Silverstein was advised to go to Cedars-Sinai Medical Center in Los Angeles, California, which has the most advanced transplant program in the United States. Amy’s first heart transplant was done in New York, and she’d spent the ensuing decades seeing doctors in New York. But even though they knew her better than anyone else, her doctors told her she should be treated by Dr. Jon Kobashigawa, a renowned transplant surgeon there. So that’s what Amy did. She packed and went cross country for treatment in Los Angeles. But she needed help, and that’s where her posse of friends came into the picture. They all had their own unique strengths that helped Amy survive in her hour of need.

Amy Silverstein was blessed with several female friends who loved her dearly. And those friends picked up their lives to be with Amy and her husband, Scott, as they waited for a new heart to become available to her. It was a very difficult time, and in the brutally honest and somewhat negative style of her first book, Silverstein explains how difficult it was… and how much a lot of it really sucked. Again, I could hardly blame her. Some of what she endured sounded absolutely horrifying. Also, as Amy got older, she became much less interested in indulging the egos of some of the people who treated her. I found her stories of what she endured both fascinating and dreadful… and again, I could hardly blame her for complaining. Meanwhile, she had these devoted friends who were there for her, in spite of Amy’s apparently difficult and demanding personality. There must have been good reasons for them to love her as much as they obviously did.

When I read the reviews on Amazon.com, I wasn’t surprised to see that, once again, some readers found Amy Silverstein abrasive and ungrateful. And, once again, I think they missed the point and probably didn’t think very long and hard about what Amy was enduring. As the negative reviewers complained about Amy Silverstein’s apparent lack of gratitude, they failed to have any empathy for her situation. It’s easy to think that if you or I were in such a grave situation, we wouldn’t be perfect patients, endlessly patient, sweet, compliant, and never once failing to constantly thank everyone profusely. But the reality is, if you are, yourself, in that situation, cooped up in a hospital room, unable to breathe or sleep, using a pacemaker that constantly sends painful shocks into your body because your heart is so diseased, and not even able to enjoy sunlight or fresh air, your attitude might suck, too. You might become demanding and unpleasant. Moreover, I don’t think Amy Silverstein was, at all, ungrateful.

If Amy Silverstein had really been an ungrateful patient, she never would have lived for as long as she did. Amy Silverstein respected both of her donors by taking excellent care of both hearts. An ungrateful person would not have done that. They would have simply given up, stopped taking their medications with the unpleasant side effects, quit seeing their doctors, and just up and died. Amy’s second donor was also a thirteen year old girl, who had been an athlete. After she received her second heart, Amy recovered within weeks. She went running, because she felt well… In fact, she felt better than she had since before her first transplant. Of course she was grateful! And she got another ten years to enjoy that heart before she died… not because the heart failed, but because of the drugs she had to take to keep it beating. I would imagine that the COVID-19 pandemic was especially hard for Amy, who was regularly wearing face masks years ago, because she was a transplant patient.

When I read My Glory Was I Had Such Friends, I could relate to Amy Silverstein’s story, and I knew she wasn’t blowing any smoke up my ass about what it’s like to be a transplant recipient. Yes, it’s important to be grateful, but as I mentioned up post, if no one ever complains, then improvements can’t be made. No one would ever see the need for improvements. That makes it harder for the patients of the future. Moreover, sometimes people should be told the brutally honest truth, so they can have a more realistic perspective. Yes, organ transplants are kind of miraculous, but they aren’t a cure. Amy Silverstein helped me realize how fine the line is between life and death for transplant patients. She would have turned 60 on June 3rd of this year, and she managed to accomplish so much in her lifetime. No one expected her to live beyond age 35, yet here we are. Maybe the reason she did live for so long is because she was so very “difficult” and “demanding”. Not complaining might have meant giving in… and giving up.

Anyway, I really enjoyed both of Amy Silverstein’s books, and I am grateful that she shared her experiences so candidly. I agree that sometimes she was negative, and I’m sure some staff at the hospitals she attended thought of her as a pain in the ass. But, I found Amy’s accounts of her experiences authentic, realistic, and important, and she was a very expressive writer.

I’m glad Amy didn’t simply shut up and stop whining. Those who found Amy insufferable can now take comfort that she won’t ever bother anyone again with her “negativity”, but she no doubt taught countless healthcare professionals through her remarkable case and astonishing longevity. Anyone who regularly reads my blog probably knows that I’m big on being real and occasionally “inappropriate”, warts and all. For me, Amy Silverstein’s books check all the boxes. I highly recommend them both.

As an Amazon Associate, I get a small commission from Amazon on sales made through my site.

Standard
communication, complaints, condescending twatbags

Reading comprehension is an increasingly rare skill…

Happy Wednesday, everybody. I’m pleased to report that I feel a lot better today than I did yesterday at this time. My only complaint is the vague and annoying dyspepsia I’ve been dealing with for awhile. It’s probably an ulcer, and I probably should see a doctor about it. I probably won’t, though. Pepcid-AC and Barry Manilow for the win. 😉

“I wanna pull on your coat about something…” in the words of the fabulous Tom Waits.

I’m becoming convinced that people have lost basic reading comprehension skills. I’ve come to this conclusion by reading comments on the Internet.

Early this morning, I woke up needing to answer the call of nature. I couldn’t get back to sleep once I’d done the deed, so I decided to check in on the world. I noticed an op-ed in The New York Times written by Amy Silverstein (unlocked), author of the excellent book, Sick Girl, and its follow up, My Glory Was I Had Such Friends. I read the print version of Sick Girl when it was first published, in 2008 or thereabouts. I think I have the other book in my “to be read” queue.

I learned a lot from Sick Girl, which was about Silverstein’s experiences being the recipient of a donated heart. Her first donated heart, which she received in 1988, lasted an astonishing number of years until Silverstein had to have another transplant. She writes:

My first donor heart died of transplant medicines’ inadequate protection of the donor heart from rejection; my second will die most likely from their stymied immune effects that give free rein to cancer.

Silverstein’s fantastic and informative op-ed (which is also on her official Web site) is about how transplant medicine hasn’t evolved much during the time she’s been a patient. Most people are woefully ignorant about what it means to receive a transplanted organ. They believe that a transplant is a cure, not realizing that having a transplant means trading one medical problem for a host of others. Taking medications to suppress immunity means being vulnerable to every germ out there. It means having higher risks of diabetes and cancer. And yet, since 1988, the protocols haven’t changed much. Amy Silverstein has already lived an astonishingly long time, but she writes that she’s coming to the end of her longevity.

Plenty of people on Facebook felt the need to chime in without having read the article. Quite a few offered thoughts and opinions that were uninformed and completely irrelevant. Some complained about the paywall, apparently assuming that newspapers are charities or public services. Those who read the article were praising it for being informative, well-written, and moving. Others were just making noise. One guy wrote this comment, not realizing that Ms. Silverstein is still alive.

Why is an article like this behind a paywall? I hope the money is going to the author and her estate.

I’ve already complained about people who whine about having to pay for good journalism, so I will try to keep that to a minimum in this post. I do think that people expecting newspapers to provide free content is a major symptom of the main issue, though. People don’t value good writing. They expect it to be provided free of charge. A lot of the people who complain are also people who support capitalism and lament government “freebies”. They’re also often the same people who complain about the idea of having to buy insurance, but then use GoFundMe to pay for their medical care and funerals. Isn’t that interesting?

Anyway, I’m convinced that because these folks don’t want to pay for the stuff they read, they read a lot less. And what they do read, they don’t pay close attention to, so they miss the main ideas of what they’re reading. Then they share their crap with everyone. That problem extends, even when they’re reading other things, like books.

Consider this. I’ve been reading a newly published book that was originally written in Romanian. The title of the book is Nadia Comaneci and the Secret Police: A Cold War Escape. When I read that title, I don’t get the idea that I’m going to be reading Nadia Comaneci’s life story, per se. This is a book about her fame, and how it caused her to be constantly surveilled by the Securitate.

I read and reviewed Nadia Comaneci’s Letter to a Young Gymnast years ago. That’s her life story, expressed in her own words. The book I’m reading now includes elements of her life story, but the focus is on how she escaped Romania after having been a tool for the state. There’s a lot of discussion about Bela and Marta Karolyi, and their alleged abuses of the Romanian women’s gymnastics team members. The Karolyis were also closely watched by the Securitate, as was choreographer, Geza Poszar, who was allegedly an informant.

Nadia Comaneci and the Secret Police was published in Romanian a few years ago, but only very recently became available to those who wanted to read it in English. I’ve been eagerly awaiting this book, and would have jumped right in when I received it, but had to finish the book I was reading about Rosemary Kennedy. Below is the description of Nadia Comaneci and the Secret Police, as provided by Amazon.com.

Nadia Comaneci is the Romanian child prodigy and global gymnastics star who ultimately fled her homeland and the brutal oppression of a communist regime. At the age of just 14, Nadia became the first gymnast to be awarded a perfect score of 10.0 at the 1976 Montreal Olympic Games and went on to collect three gold medals in performances which influenced the sport for generations to come, cementing Nadia’s place as a sporting legend. 

However, as the communist authorities in Romania sought an iron grip over its highest-profile athletes, Nadia and her trainers were subjected to surveillance from the Securitate, the Romanian secret police. Drawing on 25,000 secret police archive pages, countless secret service intelligence documents, and numerous wiretap recordings, this book tells the compelling story of Nadia’s life and career using unique insights from the communist dictatorship which monitored her.

Nadia Comaneci and the Secret Police explores Nadia’s complex and combustible relationship with her sometimes abusive coaches, Béla and Marta Károlyi, figures who would later become embroiled in the USA Gymnastics scandal. The book addresses Nadia’s mental struggles and 1978 suicide attempt, and her remarkable resurgence to gold at the Moscow Olympics in 1980. It explores the impact of Nadia’s subsequent withdrawal from international activity and reflects on burning questions surrounding the heart-stopping, border-hopping defection to the United States that she successfully undertook in November 1989. Was the defection organised by CIA agents? Was it arranged on the orders of President George Bush himself? Or was Nadia aided and abetted by some of the very Securitate officers who were meant to be watching the communist world’s most lauded sporting icon? What is revealed is a thrilling tale of endurance and escape, in which one of the world’s greatest gymnasts risked everything for freedom.

Is there anything in that blurb that indicates that this book is solely Nadia’s life story? Hell, just reading the title tells me that this isn’t a book about Nadia’s family or career. However, below was what one reviewer wrote.

I’m left wondering if the above reviewer understood what the book’s subject matter was meant to be. This is a book about the Romanian government’s treatment of Nadia and her teammates and coaches, not Nadia’s life story. The title should have given the above reviewer a clue.

Moving on to the next example…

I subscribe to The Local: Germany, an online publication for English speakers in Germany. It offers information about local news and useful topics for us foreigners living in Germany. People constantly complain about the fact that the content is behind a paywall.

Yesterday, there was a link to a “free” article asking “What’s Life Like for Foreigners in Small-Town Germany”. Again, it’s free to read, because the editors want people to respond. And yet, once again, there was a complaint about how The Local doesn’t offer all of its content free of charge (do the complainers work for free?).

Perhaps if you aren’t so rigid with the subscription, we can make more meaningful comments.

The Local responded thusly:

Hi, the article is paywall free to encourage responses. And yes unfortunately we have no choice but to impose a paywall to allow us to exist.

You’d think that would be the end of it, but no… there were more complaints and unsolicited suggestions as to how The Local could offer its content for free. Below is a sampling…

there is always a choice -just look at other media…

I don’t even click the links anymore as it’s always pay pay pay, most other get advertisers to pay, not the readers… it’s a win win, the advertisers currently speak to the few, not the many… (does this person walk into stores and read the magazines for free?)

The Local responded:

I don’t think that’s true. Most media have paywalls and those that don’t well, as the saying goes, “if something is free then you are the product”. We’d rather be the product and not our readers. Media who get advertisers to pay, write articles for clicks. We’d rather be useful and write content for those willing to pay for it.We know our members value reading articles without annoying banner ads, which is one of the perks of membership, which we have kept as cheap as possible over the years.

Someone else wrote this:

Get a sponsor, the tourist board or NGO’s, or Think Tanks, maybe the federal German government or a regional one, or hit up some EU grant scheme. There is loads of money out there for media organizations. I assume you already sell as much user data as you can regardless of being a subscriber outlet instead of a free to user one… Atlas Obscura is free and has great articles and solid writers working for it, so can you.

I was glad to see the above commenter was taken to task by another reader:

your entitlement is baffling tbh. You don’t want to purchase a product – absolutely reasonable. Demanding that you’re being given the product for free or that someone goes out to do some fundraising and get someone else pay for the product you consume…that’s quite a step further. All throughout, it doesn’t even occur to you that no one owes you anything.

To which the first commenter wrote:

Hoch weilgeborhner Frau, your pompous accusatory attestation that I demanded this media product for free is a lie, I will demand that you reread my prior comment before you castigate me for having an opinion on subscriptions and offering ideas on financing a replacement model. Sünde.

Uh… who’s really being pompous? Wow. Maybe The Local doesn’t want a replacement model for the product they offer. Maybe if you don’t want to pay for their content, you could just keep scrolling, rather than offering unsolicited suggestions on how they can offer their product for free.

I felt moved to comment too, so I wrote this:

I don’t mind paying. Your content is useful, and writers have to eat, too.

And the Local offered this response to me:

This is the main point Jenny. It’s not even about us needing to get paid (although clearly it’s important to be able to attract talented journalists) it’s just that we know we have to be useful – or readers will not pay. It keeps us on our toes.

Right. And I don’t want to read content that is paid for by advertisers. I can get that by watching network TV or reading CNN. I sympathize with those who can’t afford to pay for journalism. I just don’t understand the whining about it. God forbid someone wants to be able to make a living by creating content that informs or entertains. You don’t ask your plumber or doctor to work for free, do you?

Whoops… I truly meant to avoid complaining about people who whine about paywalls. It’s hard to avoid it, though. I know I should avoid comment sections, but they are such a fruitful source of blog ideas.

It’s pretty amazing to see how eager people are to share their views when they haven’t even taken a minute to inform themselves about the subject on which they are opining. It reminds me of Republicans who complain about rainbows on Bud Light cans and decide to boycott Anheuser-Busch, not realizing that Anheuser-Busch donates a lot of money to the Republican Party. Also, the cans featuring Dylan Mulvaney aren’t even available to the public, and yet we have people self-righteously boycotting… They’re the same people who complain about cancel culture. Too funny.

I learned about the Bud Light conundrum by watching Beau. I try not to listen to anything the Trumps say. The above video is pretty entertaining.

Well… I probably ought to wrap up today’s post. I see I’ve gone on quite a lot, and time is getting away from me. I have a vacation to research, laundry to fold, a bed to make, a guitar to practice, and a dog to walk. So I’m going to quit ranting now. Hope this post offers some food for thought. I challenge you to take a moment to read for comprehension, especially if you feel like commenting. It might spare you a moment or two of foolishness.

Standard
disasters, ethics, healthcare, modern problems, poor judgment, silliness

“I was born free… I’ll die free.” But Chad, dead people don’t need freedom…

Bill went to Stuttgart yesterday afternoon, leaving me alone with my thoughts in our big German “mansion” (ha ha ha). Actually, compared to our last house, it kind of is a mansion. It’s also priced accordingly, but we’re mostly a lot happier here, so at least we have that going for us, right? I do really miss some things about Stuttgart, though… like the beautiful scenery in the cute towns, and knowing my way around a lot better than I do here. Also, in Stuttgart, we didn’t have to deal with COVID-19, because it didn’t yet exist, hence the reason why I know my way around better down there. I got out of the house a lot more.

Like a lot of people, I am super weary of this stupid virus running my life. I’ve been doing my best to try to avoid getting sick, although I’m mostly living the way I have for the past fifteen years or so… basically as a shut in. That’s just the way life turned out for me, personally, for a lot of reasons. The one thing that has changed, though, is that I choose to stay home a lot more, mainly because here in Germany, we have a lot of annoying rules and restrictions that I prefer not to deal with. And since that means I’m social distancing, I count it as a responsible move. Yes, I am triple vaxxed, and I wear a stupid fucking mask when I’m required to, but I just don’t put myself in situations where that is required. Fortunately, I’m still basically healthy… as far as I know.

The same isn’t true for a 38 year old Hickory, North Carolina man named Chad Carswell. I read about him yesterday in the Washington Post. What makes him notable enough for a big newspaper article? He has severe kidney disease and desperately needs a kidney transplant, and apparently, there are over 100 people who have offered to donate a kidney to him. He also claims to have the money to pay for the surgery.

After almost two years on dialysis, Mr. Carswell’s kidneys are reportedly functioning at 4 percent, and they aren’t going to last much longer. Carswell applied for a kidney transplant to extend his life. But Mr. Carswell is currently not vaccinated against COVID-19, and the hospital where he wishes to get a transplant requires that he be fully vaccinated. Although I don’t remember reading it, my guess is that Carswell’s donor would also have to be fully inoculated. Mr. Carswell steadfastly refuses to get immunized against COVID-19, having already survived two infections, one of which put him in the hospital. Carswell “reasons” that he doesn’t need the shots. He told the post:

“There is not a situation in this world that I’ll get a vaccine. If I’m laying on my deathbed, and they tell me, ‘You have a kidney waiting on you if you get this shot,’ I’ll tell them, ‘I’ll see you on the other side.’”

Based on what I’ve read so far about this man, he says that this is a matter of “freedom” and his “rights”. And that’s fine. I totally get that some people are affronted by being told that they must be vaccinated, or they must wear masks… and they see these requirements as “government overreach”. In fact, I can even agree that a person should ultimately have dominion over what goes in or out of their bodies. However, just as Mr. Carswell has the right to refuse vaccines; his doctors have the right to declare him unfit for surgery because he’s not vaccinated against COVID.

I know a lot of people think COVID-19 is just a “bad flu”, never mind that the flu still kills people most years. I mean, I haven’t had the flu since 2013, but the last time I did have it, I really felt like dying. Indeed, that year, a lot of people in Texas, where we were living at the time, did actually die of the flu. There were even healthy teenagers who died that year of the so-called “bad flu”. In my case, it took me weeks to get over my sickness, and I was basically “healthy”, though unvaccinated against flu. Bill also got sick, but he did get a flu shot that year. He got well much faster than I did. I still remember being too exhausted to stay out of bed for more than a few minutes at a time. It took months to get rid of the hacking cough and lingering fatigue, and that was just the “flu”.

Carswell has already had COVID-19, and he’s been living with kidney disease for awhile… and he says he’s had health issues for years. So obviously, getting COVID-19 doesn’t scare him. I wonder if Mr. Carswell has really stopped to consider what would happen after he gets a transplant. I’m sure he’s been told that he will have to take powerful anti-rejection drugs for the rest of his life. Those drugs basically drastically suppress one’s immune system, meaning that an illness that most people would consider mild could actually kill a transplant recipient. I’ve read a couple of excellent books about people who had organ transplants.

Author Amy Silverstein, who had a heart transplant, very bluntly wrote that getting a transplant is like trading one serious health problem for another, even though her new heart has made it possible for her to survive for many years beyond her initial operation, which took place in the 1980s. She wrote extensively about how the most minor cold bug would send her straight to bed for a couple of weeks. Friends would tell her to do things to “boost” her immune system, not realizing that boosting her immune system could kill her. Being constantly sick and concerned about her health even caused Amy Silverstein to consider suicide, even though she had been given the “gift of life” from a healthy 13 year old girl who had died in an accident at a “fortuitous” time for Amy. Fortunately, at this writing, Amy Silverstein has overcome her depression and, miraculously, is still alive and relatively well after having had a second heart transplant. The first heart lasted an incredible 26 years.

I went looking for more on Chad Carswell last night. I discovered his personal Facebook page, which has a few public posts open about his situation. It appears that he’s well loved in North Carolina and, perhaps around the rest of the country, for his steadfast refusal not to be pushed around by the Democrats… (eye roll). I came away with the idea that Chad Carswell and his friends are actual morons. I’m sorry if that sounds harsh, but that’s seriously how I felt as I read some of the comments left by him and his champions. These folks are apparently NOT mental giants, although Carswell appears to be physically rather imposing, from the chest up anyway. I read that he’s already a double amputee, thanks to his health problems.

There were so many comments about medical freedom and how Carswell was “fighting” for it. I want to ask him… what the hell good does “freedom” do for the dead? And why should someone give up a kidney to someone who doesn’t respect the sacrifice enough to do everything possible to see to it that the transplant is a success? As of yesterday, both the Moderna and Pfizer vaccines have been declared safe and are fully approved by the Food and Drug Administration. That was one complaint the anti-vaxxers had about the shots. Now, they don’t have that complaint anymore. Moreover, although vaccinated people can and do contract and spread the virus, it’s clear that vaccinated people don’t usually get nearly as sick as the unvaccinated do, and they are much less likely to be hospitalized for COVID. I’ve already mentioned that donated organs are very precious, and taking the medications to keep those organs functioning will make Carswell medically fragile. So why wouldn’t he want to do what he can to ensure that the donated organ doesn’t go to waste?

Personally, I think Carswell is really enjoying the attention he’s getting. I suspect that this unusual turn of events– Carswell’s health problems, our current ridiculous political situation, COVID-19, and the annoying restrictions people are having to tolerate because of how quickly and easily it spreads, have come together to make the “perfect storm” for a man whose life probably hasn’t been especially noteworthy under other circumstances. I know some have said maybe he’s “afraid” of surgery or of needles, but it’s obvious he’s already endured other medical stuff, to include amputations of both legs. So I don’t think he’s “afraid”. I think he’s enjoying being on the Trump train, getting attention, and being held up as a poster child for the unvaccinated and their “rights”. There’s power that goes along with fame, and this is Carswell’s fifteen minutes of fame. I’m sure it’s intoxicating to experience that kind of fame. But refusing a safe vaccine to protect his donated organ and his health is probably going to cost him his life.

Below are some very telling quotes from Carswell’s very public Facebook page:

“If I DIE in pursuit of my magnificent OBSESSION then so be it I went out FIGHTING for what I love! But today while I’m here I will show you I’m still a LION and I’m still KING of the jungle! I’ll show you how hard I can FIGHT ! “ c t fletcher Pretty stoked about this afternoon! Even more blessed that god showed me along time ago my purpose on this earth and gave me and showed me the strength I needed to stand up and fight for those things but also the ability to help others . This journey isn’t about me I’ve said it 1k times over if it was I would have quit along time ago. It’s about the countless messages I get randomly telling me I help and this journey helps them . It’s the tons of people telling #lifeon daily. It’s not just a saying it’s a movement that just simply means FIGHT! The switch was turned on and now we must LIVE!

And…

You know I’ve been asked a few times the last few days why I keep going . What makes me keep
Fighting . And I told everyone as I always do the same thing it’s not about me it’s about others. But this message I got just a few min ago brought tears to my eyes not just bc the absolute amazing voice behind the song that was recorded just for me but for the sheer thought of a stranger in another state cared for me enough to send me this. All while telling me that she’s had her own struggles but seeing my journey has inspired her to get up stop feeling sorry and FIGHT! This isn’t about me it’s about the ability to change the world and impact people all across the country! If i get a kidney great if I don’t and i help motivate people to keep fighting then I’m just as blessed in heaven! Just take a min and listen to this stunning audio . Thank you to the one who sent me this she didn’t want any credit but I couldn’t let it go without being shared!!! This is why I keep going this is why I fight !

He says he wants to FIGHT, but he’s not trusting the people who can help him win the fight. His situation makes for “pretty” Facebook posts, though. I do hope the woman who wrote to Chad doesn’t follow his example.

The excitement of the story being shared has been dwindled by the sadness that I just found out my sweet dear Mrs Mary Byrd Voss passed away earlier this afternoon. She was a blessing to me and my life she called me her “Greek God” . She’s at peace and with her son billy and her husband now. I love you Mrs Mary and am grateful and thankful you were placed into my life . I’ll cherish our friendship forever ! See you soon! #LIFEON

Yes, Chad, if you keep doing what you’re doing, you will indeed see Mrs. Mary again real soon. But you go on with your bad self.

🚨🚨UPDATE🚨🚨 Listen friends idk for sure yet BUT! Something very promising may be in the mix real real soon! I just had a phone call that may allow us to reach even more people than we thought ! The meeting with the paper went well . Hopefully they do the right thing and right the article it’s like I told her this isn’t about me or for me or for me to get a kidney . I’m prepared to die over this this is about reaching more people and continuing the journey and mission to help others . And I wanted to make sure they knew it wasn’t about me it was more for getting my story out there more to continue to inspire others . But the phone call I got after I left there could be even bigger ! So shoot up a prayer that if the lords will be done this happens so the mission can continue to grow and reach othersUPDATE so was waiting on this call before I said it but Dave Faherty reached out from Channel 9 news and I am meeting with him here in about 15 minutes ! I’ll keep y’all updated !!#LIFEON

And… (“Life on?” Reminds me of “Be Best”.)

Lol so some people think this is me being selfish or this is me wanting attention or this is me whatever the ones who know me know I could care less about that I just want to help people ! But remember when I said today it’s a vax but what’s next ? How bout kids over the age of 5 with cancer being forced to move out of the Ronald McDonald house if not vaccinated by the end of the month ? WAKE UP PEOPLE! The choice we make today effect the life we live tomorrow !!#LIFEON — with Chad Carswel.

These are just a few public statements Mr. Carswell has made. It’s clear to me that he’s quite pleased to be newsworthy, and he’s enjoying the power he’s getting from taking this stand. And as a fellow American, I certainly support his right to “freedom”, although I think if he really wants to commit suicide, there are more efficient ways to do that than languish with kidney disease. I want to ask Chad how his being very sick and facing death for want of a vaccine is “helpful” to anyone, especially to those who really do want to live and are willing to do what they need to do to make that happen. Millions of people have had the COVID shots and the VAST majority of them are fine.

As far as I can tell, no one is forcing Chad Carswell to get vaccinated. At this point, no one is forcing anyone to be vaccinated. What’s happening is that conditions are being placed on those who choose not to be vaccinated. Those conditions are being placed to protect those who are willing to think of the community as a whole instead of just themselves. COVID-19 is extremely contagious, and as a medically compromised person whose body has already been through hell– to include having had COVID twice– I want to ask Chad why he doesn’t value his own health more. And why is he seeking help from medical experts if he won’t follow their advice? Why go to a surgeon and ask for a donated kidney if you don’t trust doctors when they tell you that getting COVID-19 when you are extremely immunocompromised is a terrible idea that will likely lead to tragic consequences? Why should medical professionals waste their time, energy, and resources to help someone who apparently won’t help themselves? If Chad won’t get a vaccine, how do healthcare professionals know that he’ll take anti-rejection medications?

And better yet… why should I give a shit? Well… I think I give a shit because of comments like the one below, which I’ve seen being shared on social media.

Double amputee Chad Carswell of North Carolina must have a kidney transplant to live.Multiple businesses raised funds for the surgery, and more than 100 people have offered to donate a kidney to spare his life.But Atrium Health Wake Forest Baptist Hospital in Winston-Salem told him he can’t have the life-saving procedure unless he gets vaccinated! The vax has proven completely ineffective and doesn’t protect those who got the jab from getting it…yet the hospital requires it or will let the man die. The facility that should be helping save his life is now preventing that help. Think about that….

The person who posted the above comment is clearly not a medical expert. I looked at her Facebook page, and these were her credentials:

Someone please tell me how someone with these clearly “artsy” credentials is qualified to comment about someone else’s health status? What does she know about organ donation, virus transmission, or vaccines?

But the person who wrote the above post can obviously write. She has worked in public relations, marketing, and “ghost writing”. She’s studied music. So that tells me she can put on a performance. She can write coherently. If she’s done public relations, she probably knows how to influence people and spin a narrative that will cause less informed people to care and share her wrong-headed conclusions. So that makes her a potentially dangerous source of disinformation. This person isn’t a medical doctor. She isn’t a nurse. She hasn’t studied public health or epidemiology. She does public relations! I don’t even know if she knows Mr. Carswell personally, or has any real knowledge of his medical situation or even the general needs and concerns of people who need organ transplants. Yet she’s trying to rally the troops to his cause, which is almost surely bound to end in death if he doesn’t get with the program. To use her own words, “think about that.” Especially since, at this writing, the above post has 148 “likes”, 284 reactions, and 65 shares. And every time someone shares her post, the potential for it going “viral” increases, which means that more people will possibly be misinformed. (Incidentally, for anyone who wants to accuse me of the same thing, I actually DO have a master’s degree in public health and used to work in epidemiology. No, I’m not an expert, and I don’t claim to be one, but I do have faith in the people who have been to school for much longer than I have, studying medicine, public health, and related subjects.)

Below is a post from one of Carswell’s lifelong friends…

I’ve known Chad Carswel my entire life! As kids we use to crawl through the drainage pipe under his grandmas driveway pretending to be army men! Chad is a stand up man, and an inspiration to all who know him! If anyone deserves a kidney he is definitely on the top of the short list! To refuse him life saving medical care over a vaccine that isn’t even effective at preventing infection is absurd and asinine! How is refusing life saving treatment “doing no harm” as the oath states? My hope and prayer is that he will find a doctor with half a brain and an ounce of sympathy and perform this surgery for him! Please friends and family lift him up in prayer! Pray for healing, and for a doctor that will stand by his oath!

Friend, if you really think Chad is a “stand up man” (impressive, given his double amputee status), and “deserves a kidney”, then take a moment to ask yourself why someone should donate an organ to a person who doesn’t follow medical directives by people who have studied for years to become medical experts? Why should people who have given so much time, money, and energy to study medicine do surgery on someone who stubbornly refuses to take their advice and, in fact, spreads disinformation about a deadly virus in his PR campaign against vaccines and, frankly, liberal politics? This really shouldn’t be about “owning the libs” or anything else political. This is about a man’s health– life and death– as well as the well-being of those who are following this story. If something isn’t done soon, your friend who needs “life saving medical care” is no longer going to need treatment, or freedom. Dead people, in fact, have no need for “life saving medical care” or freedom.

Anyway… in spite of this lengthy screed I’ve written, I genuinely do think Chad Carswell has every right to make his own decisions. But that right extends to other people, too. Right now, the evidence is clear– worldwide, mind you, not just in Biden’s “liberal” camp– that COVID vaccines are essential for preventing severe disease. The vast majority of competent healthcare professionals, and obviously the ones in charge of Chad Carswell’s case, agree that the vaccines are absolutely necessary. And yes, most of those people do have more than “half a brain”, and I’m sure a lot of them have sympathy and, more importantly, empathy, for Chad’s half-baked position on COVID vaccines. But even Donald Trump has said vaccines are good, and God knows, Trump wants every vote he can get in 2024. He got vaccinated, too, but if things keep going the way they’re going, his base is going to go extinct. As much as I despise Trump, I do have beloved friends and relatives who support him. I hope they have, at least, followed Trump’s lead on COVID vaccines.

So… to Chad and his followers, I would say, if you don’t want to get a vaccine, that’s certainly your choice. But surgeons can also choose to declare you unfit for surgery, just as they might if you were determined not strong enough to survive. Freedom isn’t a one way street that just works for YOU. It goes both ways. And rules must apply to everyone; otherwise, we’ll have anarchy, which I understand Trump is against– he did call for “law and order”, right (except on January 6, 2021, that is)? So, I genuinely wish you luck, and I hope all of those thoughts and prayers lift you into miracle territory. Maybe there is a benevolent surgeon working at a less restrictive hospital system who will give you what you seek. If I were you, I’d start looking far and wide. Time is most likely not on your side.

Standard
healthcare, rants

A stupid hill to die on…

I’ve been thinking about my health lately, and not just because of COVID-19. That stomach bug I had two weeks ago has left some lingering effects. Sorry if this is too much information for the delicate among you, but I have been suffering from what I think is “post-infectious IBS“. Ever since I kicked the acute version of whatever made me sick two weeks ago, I’ve been dealing with, shall we say, mixed bowel habits, especially in the morning. Since mornings are when I tend to do most of my stuff for the day, this new development is cramping my style somewhat. As I write this, I feel vaguely queasy, and I’ve had diarrhea and constipation. It’s not the greatest way to start the day, although one positive to this development is that I don’t want to eat very much. Maybe I’ll finally lose some weight.

Up until two weeks ago, I’ve had the good fortune of being pretty healthy, in spite of my decadent lifestyle. I haven’t had a cold or the flu in ages (knock on wood). I didn’t even feel sick after I got vaccinated against COVID-19. I just had a sore arm for a day or so after the first shot. After the second shot, I didn’t even have that.

I understand not everyone has been as lucky as I’ve been. In fact, I realize that some people really suffered after they got vaccinated. Still, I don’t understand why so many people are still refusing to protect themselves and others by getting vaccinated against COVID-19. It seems to me like a pretty stupid hill to die on.

This morning, I read two stories about people who are refusing to get vaccinated. One person gave up her job as an anchorwoman on a morning television show in Mississippi. Another is allowing herself to be marked inactive as a candidate for a lifesaving kidney transplant. Both she, and her living donor, are refusing to be vaccinated against a deadly virus that has killed millions of people worldwide.

I’ve written before that, generally speaking, I do have empathy for people who want to make their own medical decisions. I also understand that there are people who can’t get a vaccine for health reasons. Some people also cite religious reasons why they won’t get the shot(s)– personally, I think religious reasons for avoiding vaccines are pretty bogus. Let me make it clear that I’m not for forcing people to get shots. However, I am in favor of private businesses being allowed to make decisions based on whether or not people get vaccinated, particularly against diseases that are highly communicable and have killed so many people.

The Mississippi anchorwoman, name of Meggan Gray, is 40 years old and has co-hosted “Good Morning Mississippi” on WLOX for the past 14 years. Her former employer, Gray Television, mandated that employees must be vaccinated against COVID-19 by October 1. Gray decided not to comply with the directive. So she was forced to resign her position. She claims she had made an “informed and prayerful decision” not to get the vaccine. In a public Facebook post on her page, she wrote:

Before GrayTV mandated this vaccination policy, I made an informed and prayerful decision not to get the vaccine, mostly because I had already survived a case of COVID-19. (There are other, more powerful reasons that led to my personal decision.) I know there will be people who disagree with me or do not understand my reasons. That is fully understood because that is a protected right they enjoy. Moreover, it is a personal decision for each American; but in my opinion, a forced decision to decide between a vaccination and the livelihood of an individual is a dangerous precedent.

Unfortunately, because of my decision about vaccination, I faced termination. The decision was difficult because I knew it would impact me and my family. My choices were either I follow the mandate and get vaccinated, or I lose my career at WLOX.

Gray writes that she offered to be tested weekly (which wouldn’t have been often enough). Her request was denied, and rightfully so. Yes, it’s true that vaccinated people can still get and spread COVID-19, but the evidence is very clear that vaccinated people are much less likely to get and spread the disease. I fully support Gray’s decision not to get vaccinated. But I also support her former employer’s decision to terminate her for not complying with a company policy designed to keep everyone safe from a deadly communicable disease.

There are plenty of people out there who are willing to abide by the company’s policies and can do Meggan Gray’s job. I’m sure there are people who enjoy Gray’s work as an anchorwoman, but they can get used to someone else. Television is a pretty competitive field. I’m certain there are many people who would love the opportunity to launch a career at WLOX, although maybe some of them would rather avoid living in Mississippi. I’ve got nothing against the state myself, but I can see why some would rather not go there.

Moreover, Mississippi is an “at will” employment state. That means that a person can be fired from a job for any reason that is non-discriminatory. I’m not sure, but I don’t think COVID-19 vaccination hold outs are in a protected class of people who can claim discrimination when they are dismissed for non-compliance of company policy regarding vaccinations. I would think that someone who “prayerfully” considered not getting the vaccine would understand a private business’s right to enforce health policies. Besides, God helps those who help themselves.

I’m sorry that Meggan Gray has chosen this hill to die on. I hope she doesn’t literally die because she’s made this choice. I especially hope her decision doesn’t kill someone else, and no one ends up begging for the shot as they lie in an intensive care unit, gasping for breath. I wish her luck with her career. Maybe Fox News will hire her. Or maybe she can start a YouTube channel. I know some people are cheering on her decision not to be vaccinated. Personally, I think people who are refusing to be vaccinated are short on sense. But maybe that’s because I have a master’s degree in public health.

As for the lady in Colorado who is being denied a kidney transplant… I don’t know where she’s been, but people who need organ transplants are routinely required to abide by conditions before they can get someone else’s healthy organ(s) transplanted. They typically have to agree not to smoke or drink alcohol. They have to agree to take powerful immunosuppressant drugs and yes, be vaccinated against diseases– not just COVID-19, but other diseases, too, like hepatitis and measles, mumps, and rubella. These are standard protocols for transplant surgeries; they are nothing new.

I don’t have any personal experience with organ transplantation, but I have done some reading about the experience. In one book I read, Sick Girl, by Amy SIlverstein, the author explained that getting a transplant is basically like trading one health problem for another. She wrote that she constantly suffered from sinus infections and colds because she had to keep her immune system weakened. Otherwise, it would attack her donated heart and she would die.

Leilani Lutali needs a donated kidney. She and her living donor have chosen not to be vaccinated against COVID-19 “for religious reasons”. Lutali claims that she’s “uncomfortable” taking the vaccine, and worries how it will affect her health. She stated, “I’m being coerced into making a decision that is one I’m not comfortable making right now in order to live…” She cares enough about staying alive to accept a donated organ, and her religion doesn’t forbid organ transplants. But somehow, her religion forbids vaccines? That sounds like bullshit to me. But if her faith in a God is so strong, then maybe God will perform a miracle and she won’t need that kidney after all.

I want to ask Lutali… why in the hell did she consult physicians for help with her kidneys if she knows more than they do? I get being an expert on the experience of living in one’s own body, but why go to a doctor for cutting edge medical care if she doesn’t trust their opinions about how to prepare for a transplant? She’s concerned about how the vaccine will affect her health in the long run? If she doesn’t get a transplant soon, this will not be a concern for her anymore. She will die, and health will be a thing of the past for her.

Aside from putting herself and the success of her operation at risk, Lutali will also be putting hospital staff and other patients at risk by not being vaccinated. For some reason, these folks who know more than medical and public health professionals have missed the memo that COVID-19 is extremely contagious. Hospitals, for all of their lifesaving capabilities, are chock full of organisms originating from sick people.

Hospitals are not actually good places for sick people to be, because sick people are there, and they spread diseases. That’s why people who go to the hospital for a simple surgery sometimes end up contracting nosocomial infections or iatrogenic illnesses. COVID-19 spreads like wildfire, and people in hospitals are already vulnerable. What right do Leilani Lutali and her donor have, putting other vulnerable people at risk?

I wish Lutali luck with her quest to find physicians and a hospital that will grant her a kidney transplant without the vaccine. I hope if she finds them, she tells us who the surgeon(s) are and where they practice medicine. That way, people can make an informed decision to avoid seeking treatment from them.

Most of the time, I really do support people’s rights to make their own decisions regarding medical treatment and healthcare. I do support privacy policies, too. But COVID-19 is a different matter. It’s killing people all over the world, and it’s a nasty way to die. The vaccinations have been tested and are safe and effective. They have been shown to reduce hospitalizations and the severity of illnesses. Every single vaccine that was ever made was once “new”, but as each day passes, these vaccines become less new.

At this writing, millions of people have been safely vaccinated against COVID-19. Hospital wards are not full of vaccinated people; they are full of unvaccinated people. And those people are preventing people with other health problems from getting the lifesaving care they need. That’s not right or fair.

I’m afraid vaccine mandates are here to stay. People better get used to them.

Don’t want to get the vaccine? That’s your right– for now, at least. But there are consequences for those kinds of choices. You should be prepared to live, or die, by your decision. You’ll probably be dying alone, too, because that’s often what happens when someone gets COVID-19 and it’s bad enough to kill them. I hope these ladies wake up soon.

In other– good– health news– Arran’s pathology report came back. The crusty growths he had removed last week are benign! So that’s one reason to smile today.

Standard