Author Archives: knotty

Duggars, narcissists, Reality TV, religion

More thoughts on Shiny Happy People…

Yesterday, I watched Amazon Prime’s docuseries, Shiny Happy People as I wrote my daily blog post. The series, which was eagerly anticipated by Duggar family snarkers, was preemptively condemned by Jim Bob Duggar, who hadn’t seen it before he wrote his statement on Instagram. I shared his comments in yesterday’s post, so I won’t repost them here. Suffice to say, I think he knew this wasn’t going to be great PR for his family. However, in spite of Jim Bob’s fears, although the series promised “Duggar Family Secrets”, I’m not so sure it really delivered too much more of what most of us already knew. I did notice, though, that both Joy Anna Forsyth and her brother, Jedidiah, have respectively announced the births of their son and daughter just in time for this docuseries. Joy Anna’s baby, Gunner, was born May 17th, and Jed’s daughter, Nora, was born on the 24th. Both births were just announced within this week. Jim Bob probably hopes people will pay attention to those blessed events instead of what’s on Amazon.

The official trailer for Shiny Happy People…

What the docuseries has done is shine a light on Bill Gothard and the Institute in Basic Life Principles. It has revealed just how sick and bizarre that cult is, and how so many innocent people have been caught up in it through no fault of their own. Yes, we heard from Derick and Jill Dillard, but they weren’t the whole focus of the series. Quite a few lesser figures in the IBLP were given a voice, including a couple of men. I think people don’t realize that culty groups like the IBLP are not just destructive to females. Men who don’t toe the line can also suffer greatly.

This morning over breakfast, as I was telling Bill about the docuseries, I commented that I was so glad I wasn’t born to super religious parents who were stuck in a fundie Christian cult. I’ve mentioned before that to a lesser extent, we’ve been getting an inkling of what it’s like to be raised by an extremely narcissistic control freak through listening to Bill’s daughter. The IBLP puts that micro cult experience on a whole new level, causing a generations of young people to be stuck, undereducated and too sheltered to function effectively in the world.

Heather Heath, who wrote the book Lovingly Abused, about her experience growing up in the IBLP, spoke about how even the most intimate aspects of life were controlled. She spoke of how she bought tampons at WalMart during one of the conferences she attended. When the tampons were discovered, she was severely chastised for “taking her own virginity” with “devil’s fingers”. To be fair, this isn’t the first time I’ve heard such ignorance. Years ago, I read and reviewed a book called Do Tampons Take Your Virginity by Marie Simas. Simas was raised by strict Catholics, who had similarly odd views on feminine hygiene products.

The series indicated that Jim Bob and Michelle Duggar were moving into leading the IBLP, since Gothard was forced out for being such a pervy old man. Maybe that’s a comfort to Jim Bob, who has been trying to get back into politics so he can help turn the United States into a theocracy. I don’t think he’ll ever get back into public office, but if he’s running the IBLP, that’s a measure of power. But, then, a lot of people have seen the Amazon series by now, and will be warned away from him and his like minded friends. It’s a lot harder to suck people in to such cults now, because of the Internet and the easy availability of vast information. So, their only hope of survival is courting the ignorant and keeping the members they already have busy with breeding and church activities, hemming them in with legalistic rules.

The IBLP is just one of so many religious organizations run by extreme narcissists. Some of what was said in the series sounded a lot like things I’ve heard about religious movements, such as Mormonism. Joseph Smith, founder of the LDS church, basically “married” the wives of church members and had up to 40 wives. Some were as young as 14 years old. The LDS church has obviously changed some of its problematic earlier policies and become more mainstream. But there are still offshoots of the official church that do things more the way they were allegedly done in the early days of the church. Some of what I heard yesterday reminded me of what I’ve read about Mormonism, the Jehovah’s Witnesses, Scientology, and lesser known religious cults. Really strict religious groups with lots of rules tend to have a lot in common with each other, even if their actual beliefs are very different. I was actually reminded of Scientology when I heard about how Jim Bob got a lot of his children to sign lifetime contracts that obligated them to work for him. After all, Scientology has their famous billion year contracts for members of the Sea Org.

Overall, I thought the series was very well done. Four episodes aren’t really enough… and I think the producers are going to find that people would love to have more. I won’t be surprised if they make another series or another season of Shiny Happy People. It’s giving people what they want and, ultimately, that means more money for Amazon. I did notice a bunch of people wishing the series were available on other platforms, as they didn’t want to subscribe to Amazon Prime just to watch the series. Fortunately for me, I use Prime a lot, so it was not an issue for me. I don’t use the video part of the membership much, so it was good to get to use it yesterday. Especially since I have memberships to both the US and German versions of Amazon Prime. Yes, that’s right. Amazon Prime on the US version of the site doesn’t carry over to all Amazon stores worldwide. I don’t know if just being able to watch Shiny Happy People is worth subscribing to Amazon Prime, but if you use Amazon a lot, like I do, it may be well worth the money.

One other thing that really seemed very sad to me was how young children were constantly reminded of Hell and how they would be tormented forever if they didn’t instantly obey their leaders. I mentioned it yesterday, but I was especially sickened by the pastor who demonstrated how to properly spank children, forcing them to be “grateful” for the corrections. The little boy who served as the model will grow up someday, probably married to a woman who didn’t necessarily want to be his wife. He will likely discipline his children in a similarly sick way.

Or maybe not… Here’s an unlocked article from the Washington Post about a couple who were raised in Christianity and homeschooled, deciding to do things differently with their own children. It caused a huge rift in their family, but they decided they didn’t want to raise their children the way they were raised. They didn’t want to be instructed to beat their children with rods. So maybe there’s some hope.

While I’m sharing unlocked WaPo articles, here’s another one about a reviewer’s reaction to the series. I think it’s well worth reading… but really, I think you should watch the series, if you can stomach it and have the means. Hypocrite fundie blogger, The Transformed Wife, Lori Alexander, is obviously dismayed about it… For that fact alone, you should watch. She’s an idiot who really needs to zip it.

Oh shut up, Lori.

Well, it’s noon, and we have some plans for today, so I think I’ll sign off. Have a great Saturday!

Standard
Duggars, narcissists, Reality TV, religion

Time to binge watch Shiny Happy People on Amazon…

It turns out Amazon’s new docuseries, Shiny Happy People: Duggar Family Secrets is available on Amazon.de, which is good news. That means I can watch it on my television. But, because I want to do some writing and other stuff, I will watch it on my laptop and use my handy new Mini Pod speakers. As I wrote yesterday, I wish I didn’t care about the Duggars… but I actually think people should pay close attention to them. There are a lot of non-famous people in the United States who would love nothing more than to see conservative, white, Republican, pro-life, pro-gun, fundie Christians running the country. And one of the reasons they have such humongous families is so there are higher numbers of people like them, voting for people like them. So, I think those of us who are more “mainstream” in our ways should pay close attention.

Jim Bob Duggar is not too pleased about the docuseries. He and his wife, Michelle, have issued a statement on Instagram. See below…

I find it interesting that Jim Bob is so concerned about his privacy now, when he worked so hard to keep his reality show on TLC (The Learning Channel) for so long, even after his eldest child, Josh, was outed as a sex pest. And Jim Bob pushed for creating his show, 17, 18, and 19 Kids and Counting, even when he knew that Josh had this disturbing past.

It’s now common knowledge that, back in 2002 or so, when Josh was about 14 years old, he molested four of his sisters and a babysitter. One of his victims was just five years old at the time. Josh was, himself, a child when this happened, so his parents were obligated to do something to help him with his problems. They did eventually take action, but what they did was completely ineffective, as later results shave shown.

Life went on, and for a time, Josh Duggar was even betrothed to Jim Bob’s best friend’s daughter, Kayleigh Holt. Jim Bob and Michelle eventually told the Holts about Josh’s issues. Their solution was to have Josh lectured by an off duty cop, shave his head, and be sent away to do hard labor for a family friend. There was no consultation with a mental health professional, nor were there any legal consequences. Later, when the relationship with Kayleigh fell apart, the Duggars simply glossed over it, and went on with their show, for which they became world famous. Jim Bob had the added benefit of also becoming very wealthy, but he did not share his new wealth with his children, who were the real stars of the show.

In 2015, the old business regarding Josh’s sexually abusive past was revealed to the masses, in a huge bombshell that dominated headlines for weeks. When this news hit the airwaves, the Duggars were still very popular. 19 Kids and Counting was still going strong. The eldest children were being married off and having children of their own. Their lavish weddings were shown on the show, and they went on fancy honeymoons in exotic locations. Josiah Duggar had just announced a “courtship” (dating with the intention of eventual marriage) with Marjorie Jackson. In the wake of the scandal, that courtship fell apart. Josiah went on to marry Lauren Swanson.

Jim Bob and Michelle try very hard to do damage control… along with Jill and Jessa, two of Josh’s victims, who were pretty much forced to say they forgave their brother for the terrible things he did.

Jim Bob and Michelle went on Fox News, where they were interviewed by Megyn Kelly. I remember watching that interview in May 2015, thinking that they were lying through their teeth. I even wrote about it in my original blog. They claimed Josh was a changed person after their “treatment”. But, of course, he wasn’t. In November 2019, the Department of Homeland Security raided Josh’s business. News came out about how Josh had paid a sex worker for a private lap dance, and had very rough sex with her. The sex worker, Danica Dillon, eventually sued Josh, although the suit was later dropped. Josh also had a secret Ashley Madison account. Ashley Madison is a website where married people pay to find others who are willing to have affairs. All the while, Josh’s long suffering wife, Anna, who bore him seven children, stood by his side… even as he was led away in handcuffs after being convicted of sex crimes against children.

When it became clear that the public still wanted to watch the Duggars, TLC and Jim Bob came up with a new concept. The spin off was originally called Jill and Jessa Counting On, which was supposed to be about Jill Dillard’s and Jessa Seewald’s married lives. But then, as more Duggar “kids” got married, they were included in the show, and then Jill and her husband, Derick, dropped out of the program. It was retitled Counting On, and went on for several seasons. The spinoff was finally canceled in June 2021, in the midst of Josh Duggar’s legal woes. Josh was sentenced to about twelve years in federal prison after being convicted of receiving and possessing child pornography.

So… all of this stuff is already very public, but this new series kind of condenses the whole thing into more salacious entertainment. This is pretty much what Jim Bob did when he agreed to put his family on TV. Only now, he’s no longer in control of the final product, and all of that stuff that he willingly put out, is now being used against him. Television is a sword that cuts both ways.

I think Jim Bob’s reputation is pretty much shot now. I guess it’s understandable that he would issue a statement pleading for privacy. However, he can’t think that his pleas are going to be taken seriously. For years, he was all over TLC, openly advertising Bill Gothard’s fundie ways to the world, trying to make it seem like an idyllic, wholesome, squeaky clean way to raise families. He influenced countless people to follow his lead and join a very damaging cult. And NOW, he wants privacy!

I have already watched the first episode of this docuseries. It’s exciting to see the people involved in this series, to include Heather Grace Heath, whose excellent book, Lovingly Abused, I read and reviewed in December 2021. Jill Duggar Dillard and her husband, Derick, are on the series, as is Jen from Fundie Fridays, a YouTube channel I have been enjoying for some time now. I understand that Katie Joy, from Without a Crystal Ball, was also contacted about being on the series. However, she does not appear on the program. I know she’s a controversial figure, and there has been some speculation about why she’s not involved in this series. However, I’m not involved in any drama regarding Katie Joy, and I have no personal beef with her. So I’m just going to say that she’s not on the show, and I don’t specifically know why. I can only speculate, which I won’t do in this post.

Jim Bob Duggar was paid millions of dollars for showcasing his massive family, and being a living billboard for the Institute in Basic Life Principles, a fundamentalist Christian sect founded by Bill Gothard. Gothard never married or had children, but he expected his followers to marry and have huge broods. Additionally, Bill Gothard had a certain way he preferred the girls in his movement to look. He liked girls with long, curly hair. So, years after perms went out of style, the Duggar girls and their ilk were perming their long hair, so they could please their cult leader, Bill Gothard.

I am probably so interested in learning more about the IBLP and Bill Gothard because I’m interested in cults. I’m not just interested in big, established cults, though. I’m also interested in mini-cults… those within families. Cult leaders are usually narcissists, and they typically behave in telltale ways. My husband’s ex wife, for instance, is kind of like a cult leader within her own family system. When her children were young, she controlled every aspect of their lives and refused to allow them to be influenced by anyone above her. That meant that when her relationships with their fathers fell apart, the kids were expected to take her side. If she had her way, they’d never leave her home or her sphere of influence. But it’s not because she loves them so much. It’s because she craves absolute control, and she sees other people as tools.

When the kids were young, there was a facade presented that indicated that the kids were “happy” (although we had our doubts). Now, we are hearing that actually, things were pretty bad, and there was a lot of lying going on, to present a certain image. Listening to Jill Dillard now, I can see that she went through a similar dynamic. Yes, when she went on Megyn Kelly’s show on Fox News, she was lying… Lying for her father, to preserve the show and her connection to her family… But she didn’t feel good about it, and now she is openly stating that it was all a lie, that didn’t turn out to be enough to save the family’s tarnished reputation.

I see people like Jim Bob Duggar as mini-cult leaders. Look at how Jim Bob has managed to keep so many of his children under his control, even though they are adults. And most of them don’t seem to realize that he’s controlling them so much. He uses the prospect of being cast out and ostracized as a means of controlling his children… to include their spouses and their children. Because they don’t get adequate educations, it’s hard for the children to break away. Heather Heath’s book addresses this issue, as does Tara Westover’s book, Educated. Westover was raised Mormon, as were Bill’s daughters. Not all Mormons are like Westover’s parents were, just like not all Christians are like the Duggars. But these are just examples of people who use extremist religions as means of keeping a viselike grip on their children, forcing them to stay trapped in their cults and continuing the indoctrination with their own children.

The second episode of Shiny Happy People includes a horrifying segment on how children in the IBLP are disciplined. At one point, a pastor demonstrates how to spank a child. A little boy comes up to the pulpit as the pastor pretends to spank him. Then afterwards, the boy is forced to give the pastor a hug. When the hug isn’t good enough, the pastor admonishes him and says he needs another spanking, which he delivers. Children in this movement are not allowed to move or defend themselves when they are receiving corporal punishment. They are expected to remain still, as this “discipline” is for their own good. Then, they are supposed to be “grateful” for the correction, even if it’s extremely traumatizing.

As if that wasn’t sick enough, the show also includes clips of lessons given by Michael and Debi Pearl, authors of the book, To Train Up A Child. This book is very popular and well known within the fundie Christian community. It’s basically all about how to beat your children, and they provide very explicit directions on which implements to use. The Pearls are extremely abusive, in my opinion. My father was a spanker, but he used his hand, and basically did it when he was very angry (not that that’s the best time to spank, either). I wasn’t forced to hug him or tell him I loved him after he hit me. And he didn’t use dowels or glue sticks.

There’s also discussion about how women in the IBLP are expected to just accept whatever man shows up and says he wants her… as long as her father approves, of course. As I mentioned up post, Josh Duggar was originally supposed to marry Kayleigh Holt, eldest of Jim and Bobbye Holt’s eleven children. This pairing was decided when both Josh and Kayleigh were teenagers. When that fell apart, he ended up with Anna Keller. They were married when they were both about 20 years old. They now have seven children. Anna has all of Josh’s kids, and obviously made herself “joyfully available” to her husband. But that wasn’t enough. He still cheated on her and consumed illegal porn. Meanwhile, Anna had to present a perfect, happy image to the world, often while pregnant and on television.

It amazes me that the Duggars were able to keep up their facade for as long as they did. Jim Bob is “pleading” for privacy, and yet he’s the one who put all of that stuff out there in the first place. People love to see people fall off of pedestals, especially when they are as sanctimonious and smarmy as Jim Bob is. So… I suspect that things are going to be harder for Jim Bob and Michelle. I am sorry for their innocent children and grandchildren. I especially feel sorry for Josh’s kids, who will have to live with the stigma of their infamous father for the rest of their lives. I hope they can escape the cult and raise their children in a better way.

I’ll probably write about this tomorrow, after I finish the last two episodes. For now, I think I’ll end this post. It’s already pretty long. Hope you have a great Friday.

Standard
documentaries, Duggars, narcissists

Wow! So abuse victims are supposed to just shut up and “keep sweet”, then?

It’s been awhile since I last wrote about the Duggar family. That doesn’t mean I haven’t been thinking about them, though. Tomorrow, a brand new series is going to be released on Amazon Prime. It’s called Shiny, Happy People: Duggar Family Secrets, and it’s a four episode documentary about the Duggar Family and The Institute in Basic Life Principles, founded by Bill Gothard.

I realize not everyone knows who the Duggar Family is. You may be among those who have never seen the enormous family on their TLC reality show, 19 Kids and Counting, followed up by Counting On, a reality show that was supposed to focus on the adult children after eldest Duggar “kid” Josh Duggar was outed as a sex pest. Or, maybe you just don’t care about the Duggars, which is a very fair sentiment. In fact, I think it would be best if fewer people cared about that family. Family patriarch, Jim Bob Duggar, has been cashing in on his and his wife, Michelle’s, astonishing ability to reproduce.

I wish I didn’t give a shit about the Duggars. I have long been interested in large families, though. My father was one of nine children, so I grew up with a lot of aunts, uncles, and cousins. I always thought I wanted a large family of my own, but clearly that didn’t work out for me. I think religion is interesting, too… although I tend to be pretty critical of extreme beliefs. The Duggars are pretty extreme in the way they follow Christianity. Moreover, they turned out to be massive hypocrites. The squeaky clean image Jim Bob Duggar tried so hard to promote turned out to be 100 percent manufactured bullshit.

I don’t want to write too much about the Duggars today… although the quote that is serving as today’s featured photo did give me pause. Yesterday, I learned that yet another Duggar sister is publishing a book. This time, the book is coming from Jill Duggar Dillard, who is reportedly “on the outs” with Jim Bob, as she and her newly minuted attorney husband, Derick, sued him because they were never paid for their work on Counting On. Jill also participated in the making of Shiny, Happy People, and has been somewhat outspoken about how her brother, Josh, victimized her and three of their sisters.

I remember, back when the original show was popular, thinking that Jill was the biggest fundie “Kool-Aid drinker” of the whole family. She seemed to be a bit of a tattletale, which seemed to endear her to Jim Bob. But then she got married, and the truth about Josh was revealed to the masses. Jill was supposedly forced to help do “damage control”, to save the show so that the money train could keep rolling… Keep in mind, Jill wasn’t even really being paid for this, at least not a regular, guaranteed salary, paid to her, and later, Derick, directly by the network. Instead, the couple had to rely on Jim Bob, who doled the money out as he saw fit.

I’m not a big fan of conservative Christians, and Jill and Derick still qualify as such. However, they do seem to genuinely love each other, and I have enjoyed watching Jill blossom into a modern woman with the guts to stand up to her obviously narcissistic father. I applaud her decision to speak out to the masses. Hell, after all she’s been through, why shouldn’t she try to “cash in” on her experiences as a Duggar? I sure would!

If you read my blog, you may already know that I don’t mind speaking up, and speaking out… and sometimes that pisses people off. Some people would rather that other people just shut up and color. And if you’re a writer, you do face the danger of having people object to what you put out there. I’ve faced that situation myself a number of times. Writing takes a certain amount of bravery, because you never know how people are going to take what you write. Some people may like it, or even love it. Others may hate it, and hate you, even if they don’t even know you. Celebrities face a similar problem on a larger scale, although many of them at least make some money for their troubles. Jill Duggar was a celebrity who didn’t really profit from her celebrity status… and she was never asked if she wanted to be on TV.

I have never read any of the Duggar books. Jinger Duggar Vuolo published a book criticizing Bill Gothard a few months ago. I didn’t read it, because I had a feeling that her book was more about promoting faith. I’m not interested in that. I’d rather read some “tea”. I don’t know if Jill’s book is going to deliver the truth we’re all curious about, but if it does, sure I’ll buy it. I think the Duggars should realize by now that most people aren’t buying their facade anymore. They might as well come clean.

This morning, I was in the Duggar Family News Group, and someone posted the above quote, which was on Jedidiah Duggar’s Instagram page. Jed had “liked” the comment, and he was promptly taken to task by another follower, who posted this:

Yes, it’s harsh… but I think the poster is spot on, minus all the religious stuff.

Jed, who seems to have replaced Josh as Jim Bob’s “golden boy” son, posted this response…

It’s not necessarily wrong to point out that this is “no one else’s business.” But Jim Bob Duggar pretty much sold out his family’s privacy when he turned them all into public figures for money. Moreover, I think it’s likely that a lot of strangers know more about the Duggars than the Duggar “kids” themselves, do.

It seems that Jed wants things both ways. He wants the trappings that come with fame. I noticed this morning that he and his wife, Katey, put out a video about their recent trip to Hawaii. I don’t give a fuck about that, because I suspect they put it out there to distract people from the new documentary. But yes, they seem to expect people to care about their trip to Hawaii before the birth of their latest kid, a daughter who will reportedly be called Nora. However, the scandalous news about Josh Duggar, which proved that their image was fake, is “100% no one else’s business”.

Josh Duggar has proven that he’s a danger to other people, especially children, who are the most vulnerable of all! If that doesn’t make this story other people’s business, I don’t know what does. Moreover, Jill was one of Josh’s victims. Of course she has the right to be heard! And again– if she wants to sell her story for profit, I don’t see why she shouldn’t. Jim Bob sold her out for years! When she finally protested, his response was to ostracize her! So I say fuck him, and fuck his wife! Hopefully, by now, there’s no more chance that Michelle will be knocked up anew. 😉

Katie Joy’s latest video about Jill… interesting how such a conservative guy like Jim Bob would stand for his kids needing a “socialist” program like SNAP…

Aside from Josh being a pervert who preys on children, Jim Bob has been outed as a less than honest businessperson, not just in terms of how he treated his children, but also in terms of how he’s dealt with people in his community. I certainly wouldn’t say that his dealings have been particularly Christlike. What I’ve observed is a man who uses extreme religion to make money. He’s no different than any narcissist, really. You can easily see how they operate. They don’t subscribe to any particular religion or political movement; they just use those movements to promote themselves. Meghan Markle does it by being a supposed liberal feminist. Donald Trump does it by being a supposed Republican. And Jim Bob does it by being a supposed Christian. It’s all part of the image, which is supposed to get unsuspecting people to trust and follow. The reality is, the whole thing is fraudulent, and only meant to get people under control, working for their aims.

I hope this new book gives Jill some much needed income and a platform.

Jill’s book will be released January 16, 2024, and it will be ghostwritten by Craig Borlase, who is a credible writer who has worked with some well known outlets, such as The New York Times and the Sunday Times. Derick Dillard is also credited as an author. I don’t know how much of the book will be about their religion, which I’m not interested in reading about at all. My guess, though, is that this book is not going to be like the others. Jill, who had always seemed to be the biggest Kool-Aid drinker, is likely going to be the downfall of Jim Bob’s empire. And good for her.

Here comes the tea!

Someone recently uploaded some of the old Duggar episodes on YouTube. I watched a couple of them and couldn’t help but cringe, especially of the shows that highlighted Josh. What a total farce.

Anyway… I can understand not wanting to alienate one’s family members, especially when one or more of them are narcissists. But, I know from personal experience that breaking away from abuse requires bravery, and that means telling the truth. I would absolutely believe Jill’s truth over Jim Bob’s. And it’s high time she spoke up, and spoke OUT, about whatever she wants. She’s been silenced for much too long.

If I were Jed, I think I’d be boning up on my job skills… because he’s probably going to have to find work outside of working for Jim Bob and being on social media before too long. I hope a lot of people will pay attention, too… especially going into the election season of 2024. Bill Gothard and his ilk would like nothing better than to see the United States turn into a fundie Christian dystopian theocracy. Be very careful who you vote for.

Now, off to create some music and do my dreaded Thursday chore. Cheerio!

Standard
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 is 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