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.”
“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.
Dr. Wayne slams the first shot into the left side of my collarbone.
“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.”
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.
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 . . .”
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 . . .”
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!”
“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.”
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.
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….