karma, lessons learned, musings, narcissists

When “obsessed fans” are also obsessed with their own privacy…

Wednesday has arrived, and my nose has finally stopped acting like a faucet. So far– knock on wood– the skin under my nose isn’t completely destroyed. I’m a bit congested and tired. I slept for most of the afternoon yesterday, and then through the night, with one potty break. I ordered some tissues and ointment from Amazon, even though I live within walking distance of both a pharmacy and a grocery store. I threw in some mini Reese’s Cups to boost my morale, although maybe I should shop for a new Apple Watch. 😉

I am experienced enough with life to know that I should hold off on being too optimistic. Maybe this will turn out to be a brief cold, though. I hope it will. The weather is positively glorious in Germany this time of year. Very soon, it will turn to shit for months on end. I would like to enjoy the last days of summer 2023.

Last night, just to pass the time, I went Googling and soon ended up on LinkedIn. I haven’t used LinkedIn in years, and actually thought I’d deleted my account. But no, I do still exist on that site, albeit with a very naked profile using my maiden name. I went on the site because I was curious about someone I met only once in person, but who, along with his late wife, has had a profound effect on me since we moved to Germany. I don’t think I’ve ever written about him, mainly because I only met him the one time. I wasn’t all that impressed by him on that day in late August 2014. He’s former tenant’s husband, a guy who gave Bill a fake name and basically lied to our faces about how “wonderful” the landlords were.

I found him on LinkedIn last night, and for the first time since 2014, saw his face in a photo. He’s leaving the Army and looking for work. I would imagine retiring is now a necessity, given that he has a couple of kids to raise on his own. The specialized work he did required a lot of dangerous, classified travel to exotic lands. I took a look at his profile and passed it on to Bill, who basically deciphered it for me. Some of the words he was using were code for certain activities in the military… things that civilians wouldn’t necessarily understand at first glance, but Army folks know very well.

I didn’t spend a lot of time on LinkedIn, in spite of my curiosity. Seeing that guy’s profile just made me feel icky. I do wonder, though… I think it’s only natural.

Ever since I found out that former tenant died by her own hand last year, I’ve been left with all kinds of questions. I’m sure a lot of people might think that’s weird, or I’m just being nosy. I guess that’s a fair enough assessment. On the other hand, since she left me with this weird legacy, I figured I’m owed a little wonder. Thanks to her, I went through some pretty significant psychological trauma. Yet, I barely knew her. She knew– or thought she knew— a lot more about me than I did about her.

The only reason I even know about former tenant’s death, or have any questions about her whatsoever, is because for the four years we lived in our ex landlady’s house, she was monitoring my blogs. She had led me to believe she liked my travel blog, but she’d also found her way to my main blog, and she regularly took issue on the rare occasions that I wrote anything about ex landlady or the absolute psychological shitshow our time in that house eventually became. Former tenant would leave me blog comments, then delete them. Later, she unabashedly wrote that ex landlady’s daughter was also reading my blogs, as she chastised me for my content. In her last missive to me, she insinuated that I was “unhinged”. And yet, here I am still among the living, with no young children mourning my absence in their lives.

She shamed me over some fiction I’d written, but not yet had the chance to develop. She thought I was going to “trash” the family… who, frankly, totally would have deserved it. But, for the record, that wasn’t my plan at all. It was a fiction piece— yes, based on people I know, but most of the people who read this blog don’t even know me online, let alone off. And the story itself was a complete and obvious fabrication. Aside from that, she presumed I was writing about the ex landlady’s daughter; a woman I have never met in person, and whose first name I never even knew, until former tenant mentioned it in her final message. Ex landlady had never deigned to introduce me to her daughters. I guess she didn’t want me influencing them. 😉

Just because I’ve written snarky stories in the past, that doesn’t mean I ALWAYS write snarky stories. Moreover, the piece I’d started writing was barely developed. There was no outline to the story. It was maybe a page or two, with no significant plot development. I didn’t even know what the plot was, myself. It also never entered my mind that my actions in late 2018– in my new home– were of any concern whatsoever to a woman I had met one or two times in 2014. If I wasn’t “unhinged” at that point, I sure started to feel that way in February 2019, when it felt like I still had a “bug” in my home.

All the while, former tenant would stress how important her “privacy” was. She used different names for every comment, most of which she later deleted. She apparently assumed a lot about me, and what kind of person I am, simply by reading and judging my blog entries. I think she also wildly underestimated my intelligence, as it soon became obvious.

When former tenant was still living, I didn’t stalk her online. I didn’t so much as look her or her husband up on Google. I tried to be respectful of her privacy, even as she clearly had contempt for mine. I tolerated her complaints and even edited for her at least once or twice. Meanwhile, she must have been assuming I am a complete lunatic. I wouldn’t mind that so much if she’d kept it to just thinking I was crazy. Lots of people who don’t actually know me have thought that about me, over the years. But she was, apparently, sharing her thoughts about me with the landlady, and then later boldly admitting it to me, as she shamed me for having the nerve to be pissed. Somehow, this was all supposed to be my fault.

It all came to a head in February 2019, when I read that final private message from former tenant about how cruel and hurtful I was to her “friends”, and demanding to know what they had done to deserve such “mean” treatment from me. The reality is, they were the ones who were cruel to me. All I ever really wanted was to be left alone. You don’t have to like me, or even respect how I live my life. Just leave me alone. Otherwise, yes… I may be inspired to write about you in an ambiguous way. The difference is, you don’t have to read what I write. It’s a conscious choice– one that is usually brought about by being a nosy busybody with a complete lack of respect for boundaries.

Folks… the reality is, I didn’t actually write that much about ex landlady. I vented a couple of times toward the end of our tenancy, mainly because she was driving me crazy. She kept accusing me of doing things I didn’t do, yelling at me in my own home, and treating me like a five year old. She’d complain about ridiculous things, like a clump of dog hair in a doorway, declaring it “filth”. She’d show up unannounced when I wasn’t prepared to receive her, then look at me with disdain when I wasn’t dressed properly. She was extremely rude to Bill, and when we moved out, she tried to rip off our deposit as she declared us the worst tenants she’d ever had. She refused to negotiate over anything, and then threatened us when we had a lawyer write to her, reminding her of German law. She also falsely accused us of theft. And all of this was happening as we were losing our beloved Zane, one of the beagles who kept me sane when I lived in that house.

Meanwhile, former tenant got a pass, because they were “friends”, even though I know very well that at least some of the stuff ex landlady was complaining about were things that happened when she and her husband lived in the house. Fortunately, I DID have those blogs, which served as a record of events, since ex landlady never did a proper check in or check out between us. I also had photos and a few comments from former tenant that helped us prove our case when we later successfully sued ex landlady. So, we were vindicated in the end, although it still left me fuming at the violation and the gall they all had. It could have so easily gone the other way, with us stuck with the bill for upgrading ex landlady’s rental house and looking guilty.

Bill and I have had a few less than stellar renting experiences, but we have NEVER been treated with the level of disrespect and unfairness as we were when we left our last house. And never before did I have someone affiliated with a landlord or landlady monitoring and reporting on my blogs. Especially not someone who simultaneously demanded privacy for herself.

I’m pretty sure former tenant had people in her family monitoring my blogs, too. I could tell by hits I was getting from certain parts of the country, which stopped when the case was settled. I imagine she told her family and friends that I was some sort of mad blogger, trying to ruin people’s lives. That’s not true at all. I just enjoy writing, and I write about things that affect me. It’s sort of my vocation. She made me out to be some kind of crazy person, when all we were doing is asserting our rights to be treated fairly under German law. I’m sure to those people, Bill and I are just crooks who ripped off a kindly elderly couple in Germany. I guess it doesn’t really matter, since I’ll probably never meet those people, anyway. It still smarts a bit, though… because former tenant accused ME of spreading lies, when the opposite was true.

I tried really hard to block former tenant from my mind, but it was hard. The lawsuit took about 18 months to settle, mainly due to COVID. By then, it was around August 2021, months after we reached an agreement– our lawyer had to send former landlady another letter demanding payment, because after she agreed to settle, she never bothered to pay. Hopefully, the lawyer charged her for that letter, too. Former landlady finally sent the money to the lawyer, who then forwarded it to us. Pure contempt, straight to the end!

Once all that awful stuff was finally over, I tried to put it behind me, even though it was pretty infuriating and left me feeling violated on many levels. For three years, I had former tenant blocked on Facebook, and never so much as did an online search of her name. But then in late May last year, Bill told me something that made me curious. Since former tenant had worked for the same company Bill did, he noticed when she was no longer on the roster of employees. He also didn’t see her working for the government.

I decided to search her name on Google, just to see where she was. That’s when I found several detailed obituaries for her in at least two states, as well as a couple of memorial services on YouTube. She’d committed suicide several months earlier. So much for her privacy. She left behind her husband and two sons, as well as a host of family and friends who obviously loved and missed her, and grieved her decision to end her own life.

Here I am, years later, still ruminating on this. I think it’s because it’s September, and that was the month we moved into that house. I remember thinking from the get go that we may be in for a difficult time, but I was so glad to be back in Germany and settled somewhere. The summer of 2014 had been absolutely terrible for us. So I was just glad to be in a home, even if the former landlady had seemed obsessed with monitoring us and was very untrusting. Never did I ever conceive of being in the situation we found ourselves in a few years later.

As a person who likes to read and write stories, maybe some people can understand why this situation is still in my head. It reminds me of a Lifetime movie. All we wanted was a place to live. We ended up with a situation that I could probably turn into a made for TV movie screenplay, if I was so inclined… and maybe if it was the 90s, and people still watched such things on TV.

Sigh… well, at least it’s Wednesday, which means it’s a light chore day. Maybe I’ll find another diversion. I started reading a new book, which promises to be interesting and fun to review. And there’s always trashy TV. That might cause me less trouble than writing blog posts. 😉

Anyway… as my literature loving husband, Bill, likes to say, “Murder will out…” Or, maybe in this case, “Self-murder will out.”

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Germany, healthcare, law, mental health, YouTube

“Du bist nicht allein…” There’s always someone helpful out there…

Last night, after Bill left for his TDY to Bavaria, I was left watching YouTube videos. Because I felt a cold coming on, and my stomach was bugging me, I decided to eat some bland leftovers and drink sparkling water. Then, once it got respectably late, I figured I’d go to bed.

Because of the nature of the videos I ended up watching, my mind started wandering to dark places. When you watch a lot of cop videos, you see people in varying states of mental, emotional, and physical distress. Some cops are really good at helping people in crisis. They treat people with basic respect and decency. Some are even kind and empathic. Other cops are rude, dismissive, or just plain mean.

I watched one video last night that I had seen before. It involved a police officer named John Kovach, Jr. from Lorain, Ohio, whose 18 year old daughter, Katlyn, was dating a guy he didn’t like. Katlyn’s boyfriend, at least circa spring 2018, was Makai Coleman. Because her dad didn’t want his daughter dating Coleman, and Katlyn was by then a legal adult, she decided to leave the family home and stay with friends. She refused to speak to her dad, which was her legal right.

Below is the video of the subsequent confrontation that got John Kovach, Jr. fired from his long held job with the Lorain Police Department. I’m sure it also didn’t do much for his relationship with his daughter, at least in 2018. I don’t know if they’ve mended fences since then.

A serious abuse of power…

One of the many troubling things Kovach said as he started to arrest Coleman, for no apparent reason, is that he’d be “making shit up” about Coleman’s “charges” as they headed to jail. But then, once he saw his daughter hiding in the back of Coleman’s car, John Kovach, Jr. decided to turn Coleman loose and force Katlyn into his police car. Clearly, it was inappropriate, as Katlyn is his daughter, and he’s not exactly objective about this situation.

But as John Kovach, Jr. was making his adult daughter get in the back of the squad car, he justified “arresting” Katlyn, because he claimed she was “suicidal”. He said she’d made a comment indicating suicidal ideation the day prior. Katlyn, who was by then screaming and crying, reminded him that he wasn’t with her the day prior, as she had rightly escaped his home to be with more rational people.

According to an article by the Washington Post:

Kovach said that when he spoke with his daughter on the phone, she said, “If I can’t be with him, I don’t want to be here anymore.” He told investigators that he believed his daughter was threatening suicide.

Kovach said he intended to take Katlyn to the hospital for a “psychiatric evaluation”, since she was “suicidal”… which she obviously wasn’t. He just wanted to exert control over her. There were other claims made about how Kovach had threatened to make Makai Coleman’s life difficult. The young man had wanted to join the military, and Kovach said he’d be talking to the lad’s recruiter and otherwise abuse his authority to threaten and harass Coleman.

The way Kovach behaved on that day in 2018, though, was totally beyond the pale. Soon, he’d gone from overprotective father to abusive cop. It was absolutely right that he was fired from his job for behaving in such an unhinged way. Kovach also harassed Coleman’s sister and mother, threatening them with jail and fines for trying to intervene. Meanwhile, Katlyn was screaming and crying, while her father went into creepy control freak mode, barking at her to “knock it off.” I don’t know if he actually took her to the hospital, but it seems like it would have been a real waste of time and resources on many levels.

After I watched that video, I started thinking about life in Germany, wondering if the Kovach family drama might ever happen here. Then I started Googling. I already noticed on YouTube, watching any video that mentions the word “suicide” prompts a notice in German– “Du bist nicht allein…” (you are not alone). Yeah, you can say that again. Big brother is always watching!

What I see when I search for anything with the word “suicide” in it. YouTube includes an explanation here.

I’m kidding, kinda. I mean, it’s good that they have resources for dealing with people who are mentally or emotionally shaky. The YouTube prompt was a link to a page where there are volunteers standing by, willing to talk to someone who feels alone, either by phone or chat. That’s a good thing… although it does kind of lead one to wonder why someone would do that in their free time. I know there are caring and kind people out there who do it because they genuinely want to help people. Those people save lives. But then there are also people like Ted Bundy, who answered suicide hotlines for awhile before he became a notorious serial killer. Ted Bundy reportedly did save some people from offing themselves. He even worked on the suicide hotline with the late true crime author, Ann Rule, who later wrote an excellent book about him. She verified that he ended some lives, but he also saved some.

One thing I do think is enlightened about the German hotlines is that they don’t just address the suicidal. They have nine hotlines that are designed to address a host of issues, everything from abuse to supporting others who need help. They even have a dedicated help line for Muslims.

I got more curious about this topic as the evening wore on… remember I did study this stuff in school, sorta. So I dug a little deeper, and soon found myself on Toytown Germany (a discussion site for English speakers in Germany). In 2006, someone had posted about a someone they knew who had attempted suicide. The person went to an emergency room, was treated for a couple of days, then released. The original poster was shocked, but other people soon chimed in on the subject– some of whom were shockingly insensitive. One person said that they knew someone who had spiked his vodka with dishwasher tablets. The guy was similarly treated and released. The Americans on the forum were saying that in the United States, the person would get a 72 hour hold at least.

Some people were making ignorant comments about suicide and suicidal threats. Realizing that the thread was started in 2006, I realized that things have only gotten worse since then. People are pretty jaded these days. Then someone mentioned that an attempt would probably warrant a “stay at Haar”. That made me curious, so I went searching for information on that.

I discovered that Haar is a psychiatric clinic near Munich, and it gets pretty horrible reviews on Google. I’m sure there are other psych hospitals in Germany. Maybe some of them are helpful… but then, you have to consider the source of such reviews. They’re typically written by people who are in crisis and the crisis isn’t necessarily solved by a stay in a hospital. In some ways, it may get even worse after medical and psychiatric “help”, especially if one ends up with a doctor who is an insensitive asshole or something. On the other hand, I realize that it’s not easy for providers, either. Mentally ill people can be very challenging to deal with, especially when they are non-compliant or apathetic. Mental health providers are human, too… and sometimes, that kind of work can lead to burnout.

Actually, watching YouTube videos of American cops and paramedics is a pretty good study in burnout. I’m sure a lot of people initially decide to go into police work or emergency services because they are kind and caring, and just want to help. Some people want to feel useful or powerful… or they want to make a difference somehow. Some of those folks never tire of the work or become insensitive or impatient.

On the other hand, some people do that work simply because it’s a job and there’s always a need. I think of the man who worked as an emergency medical technician in Brooklyn, New York and hit my friend, Matt, with a borrowed Rolls Royce. Matt died of his injuries, and the so-called paramedic never even stopped to render the most basic of aid. He just let him die, while he sped off in the luxury car. This man was an EMT, but he didn’t care about Matt. Now he’s in jail, but he’ll be out before Christmas. Matt, on the other hand, is gone forever.

That’s another things I’ve noticed, too… A lot of people, at least in the United States, act like total barbarians when they get arrested. Some of them do go to prison for a long time. Others, in spite of being totally awful, get their charges dropped or a slap on the wrist. It seems to me that involvement with the police is kind of the same as involvement with hospitals. You never know what you’re going to end up paying in the long run. It depends on who you are, what your coverage is, and which state you’re in when the event happens. You can go to an emergency department and get charged varying amounts, since there’s no regulation of fees. And you can get arrested and end up with any number of penalties, depending on the cop or the jurisdiction… or, again… who you are.

Anyway… this was just one of the darker rabbit holes I’ve been down. Unfortunately, I’m in kind of a bad mood today. I caught a cold somewhere over the weekend, plus my stomach hurts. I’m sitting here with a runny nose, scratchy throat, and a dull ache in my gut, wondering if I may need to call for help myself, at some point. But my guess is that I’ll just be grouchy and thirsty, as I always am when I catch a cold. I think I’ll close today’s post and get on with the day, so I can go back to bed. I’ve got to walk Noyzi and practice guitar before it’ll be time to fall back down the emergency services abyss and see what else I can dig up to discuss. 😉

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celebrities, mental health, nostalgia, obits, psychology

Sinead O’Connor actually helped me survive the COVID-19 pandemic…

It was a shock last night when I got the news that Irish singer Sinead O’Connor died. My German friend, Susanne, shared a link to a German news article with the headline “Sinead O’Connor ist tot!” (ist tot= is dead). I went looking for confirmation and quickly found it in The Irish Times, a very reputable newspaper to which I am a subscriber. Then I remembered that Sinead O’Connor had lost her 17 year old son, Shane Lunny, to suicide in January 2022. Based on her last tweets, it appears that Sinead was still very deeply distressed about his death.

Sinead O’Connor did a fabulous cover of Dolly Parton’s song, “Dagger Through the Heart”. She wrote in her book that this was one of her favorite songs. It’s brilliant!

At this writing, details of how Sinead passed away have not been made public. She was 56 years old, and things do go wrong in 56 year old bodies. However, it wouldn’t surprise me if Sinead decided to exit life in much the same way her son did. Unfortunately, suicide can be contagious, particularly among those who are vulnerable to mental illness, as Sinead O’Connor freely admitted she was.

A couple of years ago, I read and reviewed her book, Rememberings. At the time I read the book, it was the summer of 2021. COVID hysteria was in full swing, and I was struggling with feelings of depression that were worse than usual. I remember wondering if life would ever go back to “normal”… or some semblance of normal, anyway, as my life hasn’t been really “normal” in years. Between noticeable climate change, moving to Germany, and watching the neverending Trump dumpster fire from afar, things have been rather weird for some time. COVID just magnified all of that anxiety I already had and made it much more surreal.

I’m not ashamed to admit that there were some times during the height of the pandemic when I wondered if I wanted to go on living myself. Who wants to go through life wearing face masks everywhere and being “locked down”, surveilled, screamed at, and possibly even arrested for not complying? Many people were talking a lot about how we should all be living life differently, and some were suggesting that those changes should be forever. Other people were denying the pandemic and becoming violent when they were asked to take the most basic precautions. It was terrifying, and the overall mood legitimately caused me a lot of angst, especially given how hostile and aggressive people were in pushing their views– and I mean on both sides of the issue. There didn’t seem to be much moderation… and I was so very tired of it all. It made me feel HOPELESS.

Anyway, there I was in June 2021, reading Sinead O’Connor’s book. It was about time for my birthday, and Bill and I had arranged a weekend stay at a beautiful five star hotel in Heidelberg, Germany. Heidelberg is not very far from where we live, but it’s a wonderful city. We went there for the first time in 2008, and had a blast. So, even though we could drive there in less than two hours, I was happy to enjoy the weekend turning 49… the last year of my 40s.

As we were driving to Heidelberg, I was reading passages from Sinead’s book aloud to Bill. Some of her stories were absolutely hilarious! Some were moving. Some were tragic and infuriating. I was sharing passages from her book with friends. My former shrink, who is now a Facebook friend, even had a laugh at one of them. I asked him if he thought he’d read Sinead’s book. He said “no”. I thought that was kind of a pity. I think he’d enjoy her musings. But maybe reading her book would be too much like taking his work home with him.

I remember that weekend in Heidelberg with so much fondness. It was the most “normal” I’d felt in a long time, even though COVID measures were in place. I remember having to go through a pain in the ass rigamarole to get my COVID vaccination credentials in order, mainly because I live in Germany, but got shots from the United States. We had to prove we were fully vaccinated before we could check in to the hotel, and we had to wear masks everywhere. I know a lot of people didn’t think any of that was a hardship, but for me, it was. However– I hasten to add– I DID COMPLY with the rules, even if I wasn’t cheerful about them.

Sinead O’Connor was a big part of that great weekend, because her book was so engaging to me. She made me laugh. She made me cry. I felt things other than anxiety and depression when I read her book. And we had so much fun over that weekend in Heidelberg, even if a lot of what we did involved people watching and taking pictures.

I remember sitting at a wonderful Heidelberg restaurant called Chambao on the night after my birthday. Because it was June and COVID restrictions were in place, we opted to sit inside by a window. At the time, those who weren’t vaccinated weren’t allowed in most establishments. Consequently, Chambao’s patio area was packed. The inside was almost empty. I remember the first bite of that dinner, and how tantalizingly delicious it was. It was the first really excellent food we’d had in a long while… which I know sounds very spoiled, given how much people have suffered over the ages. In my review, which I linked in this paragraph, I wrote that “my tastebuds were exploding”. It was a reminder that there are still good things in life worth waiting for and savoring. And I instantly started enjoying things more, and living life, rather than just wanting to “fast forward” through the bad parts, or just quit working altogether.

I finished Sinead O’Connor’s book, and we headed back to Wiesbaden, taking a brief detour to an awesome German city called Speyer. Speyer is also not that far from where we live, and we probably ought to go there and explore it more. But going there in 2021 was a revelation that there are still things to discover and enjoy, and the world is still out there… and a lot of it, in spite of what’s in the news, is still good. When I got home from our weekend, I bought a bunch of Sinead’s less popular albums and got to know her better. I should have “met” her a lot earlier than I did. She was phenomenal.

I still worry about things beyond my control. I worry about Donald Trump getting back into office and turning the United States into a dystopian, fascist, nightmare. I worry about my body turning on me and having to make decisions that I’ve been putting off for years. I worry about Bill and my mom, and the prospect of someday losing them. As Sinead’s sudden end has shown us, no one is guaranteed tomorrow.

Well… I don’t know how or why Sinead O’Connor died yesterday. I have my suspicions. If I’m right about my suspicions, it’s just one more reminder that mental illness is a real, and it can be deadly. I know she had many people in her life who loved her, in spite of her difficulties with mental illness. My sincere condolences go out to those who actually had Sinead in their daily lives and will miss her very unique and unforgettable presence. I have no doubt that having her around could be very difficult at times, but I also have no doubt that she rewarded her loved ones with warmth, creativity, unusual insight, and true hilarity.

I obviously didn’t know Sinead as a regular person, but she really did help me survive the pandemic. At the very least, her hysterical stories about her fantasies of having sex with Mormon missionaries and the nun who drew a penis on the chalkboard at her school gave me a reason to keep going (and if you want to see those anecdotes, have a look at my review). I hope wherever she is today, she’s finally at peace.

RIP Sinead O’Connor– December 8, 1966- July 26, 2023

I recorded this cover of Sinead O’Connor’s version of Elton John’s “Sacrifice” 9 years ago. I’ll probably redo it today, but for now, here’s a musical tribute.

Here’s the remake…

It’s no sacrifice at all.

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mental health, musings, psychology

What it’s like to be chronically depressed…

Something came up yesterday that I feel like addressing in today’s blog post. I’m going to write about it today, because I realize that sometimes people must read my posts and wonder if I’m in need of “help”. I hope this post comes across as basically respectful and clears up some confusion. I also want to offer some perspective to people who may not understand, but would like to try.

I’ve mentioned it many times before in my blog, but I’m going to mention it again. I have a long history with major depressive disorder. I do not take medication or see a therapist for it these days, but there was a period of about six years during which I did seek treatment. That was back in the late 1990s, when I really needed help. It was the first time I ever sought treatment for depression. I wasn’t even sure I was truly depressed, since I’d always had kind of a bent toward being cranky, pessimistic, and sad. I thought it was just another situation during which I had said or done the “wrong” thing and I was to blame, yet again, for things not going the right way.

My experiences with being treated for depression were largely positive, although I didn’t like my psychiatrist very much. I am grateful to him for prescribing medication that helped me change my life and convinced me that clinical depression is a *real* thing. But I had problems with him, because he used to fat shame me, and he treated me like a child, even after I’d earned two master’s degrees and gotten married.

The psychologist, on the other hand, was wonderful. He helped me immensely. Even today, he is a friend.

I stopped taking antidepressants in 2004. I had a number of reasons for taking that step. Sometimes, I miss taking medication for depression, but I don’t miss having to see doctors regularly. I don’t miss having painful discussions with people about things from the past, especially when they judged me, as the psychiatrist had. But I can’t deny that Wellbutrin SR made me feel a lot better physically and emotionally. I had to take a lot of it, though. Apparently, I have a very efficient liver. What can I say? I come from a long line of drunks. 😉

So what do I do to stave off depression now? I mostly write or make music. Sometimes I write things that sound serious or dramatic. Such was the case a couple of days ago, when someone read my post about those guys who temporarily invaded my home last week. I wrote about wanting to “just die”. A reader got concerned and confronted me about it on social media.

I’m going to admit that when I first read the lengthy comment on my link, my first reaction was annoyance. That is, in part, due to my curmudgeonly personality, which is a feature of my chronic depression. But then it occurred to me that the person really meant well, and that’s a good thing. I also wanted to address the comment immediately, because I didn’t want people to get alarmed or stir up drama. The last thing I needed after last week was a visit from the Polizei because someone got worried after reading my blog.

You might think this isn’t necessarily something I needed to worry about. However, several years ago, a former Facebook acquaintance of mine got a visit from the cops because someone hacked her page. The hacker wrote a post that indicated that she might harm herself. Her friends and relatives, naturally, got very upset. They tried to call her, but she wasn’t answering her phone, because she was sleeping. Someone called the police. The cops came over and made her send her kids to someone else’s house for the night. They even threatened to send her children to foster care.

That situation isn’t really the same as my situation. I had written a passive comment or two about “wanting to just die”. And the truth is, having chronic depression often causes me to think about my eventual death and realizing it will be probably be a relief. When you’re dead, you don’t have any problems, and you don’t cause any problems. You’re just a part of history. We all die. I do think about that reality and, sometimes, even kind of look forward to it. But simply making that statement doesn’t mean I’m in a crisis or contemplating suicide. It’s just a statement of truth for me.

Having chronic depression means that I don’t often enjoy life that much, and I tend to be pessimistic. I can and do have fun sometimes, and many people mistakenly think I’m “happy” because I have a good sense of humor. But some of the most depressed people I’ve ever known have been hilarious. A lot of them are artistic, too… incredibly gifted in music, art, drama, comedy, dance, or writing. You’d think it would be a joy to have that artistic bent, but in my experience, it can make people feel things very intensely, which can lead to extreme highs and lows or, in my case, much milder highs and lows.

I assume that most people see me in a negative light. I ruminate on the past and realize that I’ve been in a lot of situations with people that ended negatively. I never go into situations wanting them to end badly, nor do I want to cause problems for people. At the same time, I don’t want to be someone’s doormat, either. So I struggle to find the sweet spot of being friendly, but assertive.

Last week, I spent four days with two strange men in my home. They didn’t speak my language, and they were doing work that was loud, messy, and disruptive. They didn’t seem to care that their work was affecting me. In fact, I picked up distinctly contemptuous vibes from them. I felt helpless, and being around them brought me back to an awful time back in the late 90s, when I was seeking treatment for depression.

During those days, I lived with my parents. I didn’t want to live with them, and I was trying to work my way out of the situation I was in. But I had some setbacks. First of all, I got sick enough with cellulitis one day that I had to go to the emergency room. I had no insurance, so the bills wiped out the money I’d been saving. Secondly, my parents were putting tremendous pressure on me to move. I wasn’t welcome in their home. My father was an alcoholic control freak who would do things like come into my bedroom and use the toilet, which he then didn’t flush. I mentioned this to my psychologist, who was aghast. He said, “Just like a dog… marking his territory!”

Well… last week, I felt the same way I did when I came home from work one night in the late 1990s, and found concentrated urine in the toilet in the bathroom. There was absolutely no reason for my dad to use that bathroom. We had two others in the house, and one was in his picture framing shop. My bedroom was in an out of the way corner of the house. He would have had to go out of his way to use that bathroom, and with him, my mom, and me in the house, it’s not like there was ever a line to use the other bathrooms.

The way those guys treated me last week reminded me of my dad, peeing in the toilet and not flushing, leaving it for me to discover and deal with. It was blatantly disrespectful. You might realize that when your own father treats you with contempt, it makes you question the reasons for your existence. Here I was in 2023, sitting in my own home, a rental… and these two guys were acting in the same incredibly disrespectful way toward me, putting their tools on my freshly oiled teak furniture, sitting on my new cushions, and putting their sock clad feet up, while blaring music.

Now, I could have marched over to my landlord’s house and demanded that he do something. In retrospect, maybe that’s what I should have done. But I knew that would slow down the progress of simply getting them done with the job and out of my house, hopefully FOREVER. I also didn’t want to cause problems. I never do. So I reacted in a passive aggressive way, which isn’t the best way to be, I’ll admit. And I had yet another thought of how relieved I’ll be when I’m dead, and I don’t have to deal with this crap anymore.

Stating that, however, does NOT mean that I need an ambulance, or to talk with a suicide counselor, or anything else of that nature. Like I said… I write and make music for my mental health. Some people hate what I do. Some have even dared to offer me “constructive criticism” on my posts. I always encourage those people to just keep scrolling.

Generally speaking, I only post my links once on my Facebook page. The vast majority of people don’t click the link, so most people don’t read my comments about my inevitable death. But they might read the comments left on Facebook. At this writing, I have 383 friends. An inflammatory comment on Facebook can lead to some big time unnecessary drama and alarm. Fortunately, the reader who was concerned was kind enough to delete the comment when I explained that I prefer a PM or even better, a comment on the actual blog post, rather than a Facebook comment on a concerning post. Because people love a good drama, and some people want to be a hero when there’s no need for heroism.

Something else I want to mention… It’s certainly not wrong to express concern for someone who writes or says something that seems “disturbing”. But immediately assuming someone is in need of “help” because they mention something taboo can have a pretty terrible effect on free thought and expression. I don’t consider myself a great artist or writer, but part of what I do requires free expression. I would hate to censor myself because of fear that someone might misunderstand and summon help when none is required.

But even if I really was feeling suicidal… it is kind of my life, isn’t it? Which isn’t to say concern isn’t ever warranted… but I always feel like people tend to act in a disingenuous way sometimes when a person has simply had it with living and dares to express it out loud. They feel better for calling the cops, or whatever… saving the person’s life. But that means the person gets hauled off to a psych ward, where they pretty much lose every shred of dignity. And after the person is “okay” again, the helpers sort of drift off… maybe until the next crisis arises. Or maybe not.

Anyway, for those who might have been concerned, rest assured, I’m fine. I feel a lot better now that the work is done, and I’ve been able to unpack it somewhat. And no, I’m not thinking of doing anything drastic. There’s no cause for alarm.

And now, I must close this post, because I need to get dressed. Bill is taking me out to lunch.

For more reading on chronic depression, click here.

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communication, condescending twatbags, healthcare, mental health

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

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

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

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

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

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

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

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

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

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

“Hello, Mimi.”

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

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

“Today I will put in a pacemaker.”

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

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

“I’m not going to sleep.”

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

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

“Not exactly surgery, but—”

“Good then. No sedation.”

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

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

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

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

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

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

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

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

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

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

I share my thinking with the nurse.

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

“I hope you’re wrong. But thank you.”

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

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

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

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

BANG!

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

“Ow!”

“That hurt you,” he says.

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

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

BANG!

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

That’s it.

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

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

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

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

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

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

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

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

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

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

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

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

The Versed sweeps through my IV . . .

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

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

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

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

It was cancer.

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

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

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

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

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

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

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

“Go where?”

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

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

“Bye.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Ecu-lizumab?”

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

What?

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

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

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

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

“No, no. But the team has decided—”

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

“Of course you are, but—”

“I have a voice!”

“I didn’t mean to make you feel—”

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

Not a chance.

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

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

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

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

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

Pretty?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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