Tag Archives: true stories

book reviews, history

Reviewing The Rings of My Tree: A Latvian Woman’s Journey, by Jane E. Cunningham…

Some time ago, I downloaded The Rings of My Tree: A Latvian Woman’s Journey, by Jane E. Cunningham. The book, which was published in July 2004, sat in my Kindle queue for a very long time. I just searched my digital orders on Amazon.com and I see that I bought this book in April 2013– over ten years ago! I just now got around to reading it, three months after Bill and I visited Latvia for the first time.

I’m now glad I waited so long to finally read this book, after actually visiting Latvia, and having spent the last nine years living in Germany. My own life experiences gave me more appreciation for The Rings of My Tree, the extraordinary story of a woman named Mirdza, whose fate led her far away from her homeland when she was just a young woman newly out of high school. The title references how Mirdza’s grandmother taught her how to determine a tree’s growth by its number of rings. Mirdza also learned that strong trees weather storm after storm. Like a strong tree, Mirdza weathered many storms in her long life. And if you’ve ever been to Latvia, you know that it’s a country where trees are revered. One of our guides told us that it’s a tradition for new parents to plant a tree when a baby is born– linden trees for girls, and oak trees for boys.

Mirdza’s story is lovingly written by author Jane E. Cunningham, who, as of 2012, lived in Connecticut, and wrote that Mirdza, then aged 92, was then living in a nursing home. I’m sure that by now, Mirdza has passed away. But wow… she really lived an amazing life. At the time she wrote Mirdza’s story, Jane Cunningham had known Mirdza for forty-five years. They were neighbors. Jane was one of the first Americans who became a real friend to Mirdza, who fled Latvia to escape Soviet occupation. She landed in Hitler’s Germany before a series of lucky events led her to an American run displaced persons camp (DP camp) in American occupied Berlin.

While she was in the camp, Mirdza met and, in 1949, married her Latvian husband, Janis, who died in 2000. In 1950, the two had a son, who was born in Germany. When their son was six months old, the family moved to Oklahoma, where they were sponsored by a wealthy American couple. Janis and Mirdza worked for the couple to repay them for their passage to the United States. They had a second son in 1951, who died when he was a month old. Later, they landed in New England, where Mirdza and Janis spent the rest of their lives. In 1961, they had one more son. In May 1962, Mirdza, Janis, and their German born son became naturalized American citizens.

You might think The Rings of My Tree might be mostly about Mirdza’s life in America, but the story is mostly about Mirdza’s upbringing in Latvia, time in Germany, and subsequent journey to America. Mirdza was born in Jaunpils, Latvia in 1920. At the time of Mirdza’s birth, Latvia was a free country. Mirdza’s mother became very sick and died when Mirdza was only four years old; consequently, her earliest years were spent being raised by her grandmother, Gobina. Gobina was her father’s mother, and a very faithful, Christian woman whose father was German. She taught Mirdza how to speak German, how to knit and crochet, and educated her “from the Bible, ‘But the very hairs of your head are all numbered’ (Matthew 10:30). She would one day come to apply that Bible verse to her limited days of freedom in Latvia.

Mirdza’s father had been the postmaster in Jaunpils. Her mother had been a switchboard operator before her death. The couple met while working at the post office, and built a beautiful home for their young daughter. But the beautiful life filled with roses and domestic bliss was not to last, as leaders in other countries were plotting to seize Latvia. Mirdza and her friends, family, and community were blissfully unaware of what would come in 1940, when the Russians took over the country and annexed it into the Soviet Union.

Mirdza was five years old when her father remarried a young woman named Anna, who was not very nice to her. Anna was very jealous and hated anything that reminded her of Mirdza’s mother. She eventually gave birth to Mirdza’s half sister, Rasma. Although Mirdza had known her mother and missed her, she was expected to accept Anna as her mother, even though Anna never treated her lovingly, as if she was her daughter. When Mirdza addressed Anna by her first name, she was chastised and told that Anna was her “new mother”. That was difficult for her. But in spite of the early hardships she endured, Mirdza was happy in high school and excited about her future.

Then came Josef Stalin and the Russian soldiers who would bomb Latvia into submission, as Hitler’s Army also approached. Mirdza, and so many of her countrymen, were now caught in the crossfire of World War II. At first, she thought life under the Germans might be better than life under the Russians. She stayed and worked at the post office for awhile, befriending a German soldier who was decent to her. She helped him send food home to his wife, and he ended up saving her life by giving her his wife’s address in Germany. When the Russians became a direct threat, Mirdza ran for her life, boarding a ship that took her to Poland, and onward to Germany, where she became a refugee, experienced hunger, humiliation, and homelessness, and witnessed hopelessness and despair that would haunt her forever. On her way out of Liepaja– a Latvian port town that Bill and I visited in June– Mirdza fell and injured her hip and her left hand. From then on, and for the rest of her life, she walked with a noticeable limp– a constant reminder of what she’d left in Latvia.

Mirzda’s life was not easy, but she somehow managed to survive a number of near misses that should have killed her or driven her to suicide. Along the way, she met people who taught her new things, helped her, or hindered her. She met one woman who actually talked her into surrendering to the Russians. She and the woman were actually waiting for a truck to take them to a Russian camp when they were picked up by an American who gave them an opportunity to find freedom.

The Rings of My Tree is a fascinating read for me, because I find World War II an especially interesting time in history. I would feel that way even if I hadn’t spent so many years living in Europe. However, what makes this book special– especially in 2023– is that it’s so relatable to today’s times. Mirzda experienced a lot of the same things refugees are experiencing now. Like other people who have fled their homelands for peace and safety, she faced discrimination, ignorance, and hostility. But she also met kindness, decency, and generosity. As I read about how Mirdza was treated in 1950s era America, I couldn’t help but realize that people of 2023 behave in much the same way, forming opinions about subjects about which they know nothing and about which they don’t care to be educated. Below are excerpts of the book that seemed especially insightful to me:

But aside from her experiences as a Latvian refugee turned American citizen, Mirdza also learned some hard personal lessons. When she was living in the DP camp with a bossy fellow Latvian woman named Tanya, she learned how to be assertive. Tanya gave her stockings and said something along the lines of, “Darn these for me.” Mirdza was about to do as Tanya demanded, but then something occurred to her, and she steeled her spine:

I related a lot to this… and I think my husband could, too. He was not afraid to go to Iraq with the US Army, but he was afraid to stand up to people like his ex wife. Thankfully, he’s better now.

I see that The Rings of My Tree is no longer available as a Kindle download. I think that’s a real pity, as physical copies of the book are pretty expensive. I do think the book is well worth reading, and even paying a lot for, if my description of the book is intriguing enough. I’m just happy I downloaded it when I had the chance, and I’m glad I finally got around to reading Mirdza’s story. And I do think it’s a blessing that I waited until now to read this book, after I’d had a chance to see the place Mirdza left behind. Latvia is a very beautiful country, with many trees, beaches, and grand old buildings that predated the Soviet occupation. It’s good to know that Latvians are free to be Latvian now, and their homeland is free again.

When we visited Latvia in June of this year, I heard firsthand from Latvians that they never wanted their homeland to be occupied by Russians… and I read in Mirdza’s story how terrible communism is. I had also seen that in Armenia when I lived there, as well in other countries that used to be ruled under communism. But, toward the end of the book, it becomes clear that capitalism isn’t necessarily better. I don’t know if Mirdza realized it herself, but when her half sister, Rasma, visited her in America, after the fall of the Soviet Union, she was left flabbergasted by American supermarkets. She was bewildered by the huge array of choices Americans have, and the terrible waste… as well as the ignorance so many people in America have about the rest of the world. Sadly, as I see every day on Facebook, not that much has changed since Mirzda’s young life as a refugee. And she had the benefit of having white skin, which helped her fit in with the ruling class in the United States.

Anyway… I really enjoyed The Rings of My Tree. I’m grateful that I had a chance to read Mirdza’s inspiring story through Jane Cunningham’s capable writing. I hope those of you who will read this review will get something from it, and perhaps, try to read this book yourselves. It really offers perspective that I think is lacking from so many Americans… especially those who never venture beyond the United States’ borders. Yes, Americans are very fortunate, but our luck may be running out before too long. I implore you to open your eyes and your minds to what could happen to you or yours someday. You could learn a lot from Mirdza’s story, if you’re open to the lesson. I sure did.

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book reviews, careers, money

Sephe Haven’s My Whorizontal Life: An Escort’s Tale: The First Six Months…

After recently reading about the fall of the Falwells, I decided I needed something a little lighter and faster to read. I ended up finding Sephe Haven’s memoir, My Whorizontal Life: An Escort’s Tale: The First Six Months. This book, which was published in 2019, gives readers a look at one woman’s unlikely journey into sex work. I’ve never been one to shy away from controversial topics, so when I saw the memoir being suggested on Amazon, I decided to take the plunge.

Who is Sephe Haven, and why did she become an “escort”?

The first thing to know about Sephe Haven is that it’s not the author’s real name. She uses a pseudonym. But before she became a sex worker, she was reportedly an actress who graduated from Juilliard in the 1980s. Amazingly enough, Haven writes that Juilliard was the only drama school of several good ones that accepted her.

Like a lot of people– especially those who study the arts– Haven left school with a lot of debt. While she was talented and well trained as an actress, she wasn’t finding work that could support her adequately. One day, she saw an ad for escorts. Big money was promised. She was 26 years old and relatively good looking, so she called the phone number and was invited in for an interview. There, after an initial screening, she met “Susan”, a very strict madam who immediately laid down the law.

The author was given two names. When a client paid $200 an hour, she was “Gwen”. When the rate was $300 an hour, she was “Tasha”, a name she eventually changed to “Natasha”. Although it was the 1980s, when AIDS was still very scary and kind of new, Haven plunged into the new job with only slight trepidation. Soon, she found that she was kind of a natural, as she learned what men like and even managed to empathize and humanize the work a bit.

The money was good, and it came easily… but soon, she broke one of Susan’s rules and was cut loose. The prospect of going back to regular employment was unappealing for a lot of reasons– especially financial. Haven started looking for other opportunities in the sex worker industry and tried a couple of places. Neither were as satisfying as working for Susan was, as Susan was strict, but very professional. And Susan made sure her girls were safe, which was more than a lot of the madams bothered with. Not surprisingly, the author got another chance with Susan and never broke another rule… and if we’re to believe her story, she was richly rewarded for it. Yes, she made money, but she also made some connections… or, at least that’s how the story goes.

My thoughts

I’m of kind of a mixed mind about this book. It’s a quick and easy read, which I enjoyed. Haven is sometimes funny, or at least endearing, and the book is well-written. My Whorizontal Life is also priced reasonably, so I wasn’t out a lot of money when I downloaded it. And, I have to admit, it did make me think… and have some empathy for people in the sex industry. In some instances, Haven really seems to provide a much needed service to lonely men of means. We often forget that a basic human need for most people is a connection to someone… being touched or even just talking to someone is very important to the vast majority of humans. So, on one level, Haven was providing a needed service.

However, although she changed the spelling of “horizontal” to the punny “whorizontal”, Haven kind of ripped off comedian Chelsea Handler’s title. Handler wrote My Horizontal Life: A Collection of One Night Stands in 2013. That was the first thing I noticed.

The next thing I noticed is that the book feels a bit incomplete. I felt like it ended kind of abruptly. There were a few stories in the book that I felt like she might have fleshed out a bit more. Maybe one more anecdote would have been good, although it does look like Haven meant (or means) to make this into a series. I don’t see another book yet, though, so I’m not sure if she scrapped the idea or what. I would read another installment if she wrote one.

I did appreciate that Haven sort of channeled the hooker with the heart of gold stereotype, as she also incorporated some of the acting skills she learned, as well as some comedy chops. She also included a story about the disappointing reaction she got from one guy she knew at Julliard when she told him how she was earning money. I’m sure he wasn’t the only one who knew. I would have liked to have known a bit more about how people in her life reacted to this line of work. But then, this volume was just about the first six months. Maybe that was meant for a later book.

It’s important to remember this book is about a bygone era. Haven was doing this in the late 80s and early 90s, so you will read about a lot of people smoking, watching videocassettes, and playing tapes. If you’re a young person, that might seem odd… but if you’re middle aged, it will all make perfect sense.

As I was reading this book, I thought this might make an interesting show for Netflix or something… With the right actors, I think it could work as a comedy. This book is mostly comedic, with almost nothing in it that would make you think sex work could be dangerous or scary. That’s probably another problem I have with it. Haven makes sex work seem like a great gig. Maybe it really was for her, but I know that’s not always how it works out for those who get into it. And, as Haven found out, it can hard to leave that job behind. In her case, it was because the money was so good, but in other people’s cases, it’s because of scary pimps and the like.

Anyway, if you think My Whorizontal Life might interest you, I’m happy to recommend it. I’m glad it helped cleanse my mental palate of the sleazy business promoted by the so-called Christian Falwells. At least Haven is somewhat honest about what she was doing, right? That’s more than I can say for certain evangelical “Christians” in Lynchburg, Virginia.

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book reviews, healthcare

A review of Salt in My Soul: An Unfinished Life, by Mallory Smith…

I remember when I first read about the genetic disease, cystic fibrosis (CF). It was December 1985, and my parents had a subscription to Reader’s Digest. That month, the condensed book excerpt was Frank Deford’s heartbreaking memoir, Alex: The Life of a Child. Deford had written this achingly beautiful account of his daughter, Alexandra, who died from CF when she was just eight years old. Alex was almost a year older than me, so her story was particularly poignant as I read about her as a 13 year old. Later, I bought Deford’s book and read it more than once.

Ever since I first learned about CF through Alex’s story, I’ve been interested in reading more about people who have lived with and died from it. Cystic fibrosis is a disease that affects everything about living. Though there have been some significant medical science breakthroughs that have made it possible for many CF patients to live much longer than Alex did, the sad truth is, it’s a disease that still claims so many young, promising, amazing people long before they should die.

Mallory Smith was, like so many CF patients seem to be, an extraordinary young woman. She died on November 15, 2017 at age 25, having accomplished incredible things during her short life. Her passing came about two months after she received a double lung transplant at the University of Pittsburgh Medical Center (UPMC). When she was still living, Mallory was a prolific writer. She kept a diary while she was struggling with cystic fibrosis.

After her death, Mallory’s mother, Diane Shader Smith, edited and published her diary, which she started when she was 15 years old and continued until her death at age 25. The book is called Salt in My Soul: An Unfinished Life. The title refers to a universal condition of babies born with CF, salty skin. It’s such a well known phenomenon, there’s even folklore about it:

“Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon will die.”

Salty skin is a hallmark of babies born with cystic fibrosis, a disease primarily of the lungs that is passed down via genes from both parents. Mallory was also a native of California and grew up near the Pacific Ocean. She was a swimmer, among so many other things. As I read about her medical travails, I couldn’t help but be amazed by all she managed to do with her life, in spite of her inevitably fatal illness. And, based on what I read in Salt in My Soul, she managed to do most of it with a positive, uplifting attitude, that won the respect of thousands of people who were lucky enough to know her personally.

Mallory was diagnosed with CF in 1995, at the age of three. She grew up having to endure frequent hospitalizations, taking endless medications (about 60 pills every day), having daily therapy sessions to loosen and expectorate the thick mucus caused by CF, and becoming all too familiar with hospitals in Los Angeles and San Francisco. Like most young people, Mallory had dreams of traveling the world and doing great things in her life. So, even though she was very sick at times, Mallory did all she could. She somehow managed to get excellent grades, participated and captained three sports teams, and got elected prom queen. She was clearly very likable and inspirational and based on her book, had so many friends and loved ones who adored her.

When she was choosing colleges, Mallory applied to Stanford University, not just because of its stellar academics and excellent reputation, but also because it had a hospital with CF experts on staff. Mallory’s college career was punctuated with hospital stays and doctor’s appointments, yet she was determined to live as normally as possible. She had roommates, and they became accustomed to everything she needed to accommodate her disease. Mallory eventually graduated Phi Beta Kappa from Stanford with a 4.3 GPA and a major in human biology with a concentration in environmental anthropology. After graduation, she became a freelance writer and lived in Los Angeles for awhile, until her health required her to move back to San Francisco, to be closer to her Stanford doctors.

When Mallory was a teenager, her lungs became infected with bacteria, including a deadly form of  Burkholderia cepacia that became a superbug highly resistant to antibiotics. CF is bad enough when the bacteria involved are not superbugs; however, Burkholderia cepacia colonization made it much more difficult for Mallory to qualify for the double lung transplant she desperately needed to survive. Salt in My Soul covers the story of Mallory’s fight for a transplant, which doctors were reluctant to do. The superbug infection makes it much less likely that the transplant will be successful, as the bacteria can still colonize in the patient’s lungs and kill them quickly. Ultimately, that is what happened in Mallory’s case.

Even as she was dying, Mallory’s family and friends were trying to find a new treatment for her. Her parents reached out to an epidemiologist whose husband had “phages” treatment, a new and experimental protocol that has shown some promise in helping people vanquish superbug infections. They were just about to try it with Mallory when her health went past the point of no return.

The phages treatment was one that Mallory never had the chance to try, but she did help research at least one drug. Mallory was being treated with a medication called Ataluren, which had seemed to be helping her. However, she experienced multiple episodes of hemoptysis (coughing up blood), and was taken out of the study. The drug was later discontinued.

This book covers the incredibly challenging financial issues faced by families who battle CF. I got the sense that Mallory’s parents were fairly well off financially, and they did have insurance. However, like all insurance companies, Blue Cross didn’t want to pay for certain necessary services. When it came time for her transplant, it was offered at a hospital that was not in Blue Cross’s network, and officials there refused to approve her for coverage. It took a minor miracle to straighten out that mess, and I was left sitting there, shaking my head in amazement. If I hadn’t married Bill, I might have wound up working for a health insurance company, as one of my graduate degrees is in public health- health administration. Health insurance is kind of in my wheelhouse… but reading about the dirty dealings Mallory’s family had to endure with their health insurer made me glad that’s not my life’s work. Health insurance companies in the United States literally gamble with people’s lives.

Mallory’s story also includes insight as to what it was like for her to have a love life while suffering from CF. Mallory had a very devoted boyfriend named Jack who was always there for her, just as her parents were. Jack includes some entries in the book, writing about how he knew his love affair with Mallory would end in tragedy.

I just finished reading Salt in My Soul this morning. While I don’t think it affected me in quite the profound way Frank Deford’s book, Alex: The Life of a Child did, I did find Mallory Smith’s story very moving and, at times, infuriating. A few days ago, without naming the book, I wrote about how Mallory was mistaken for a coke fiend because of her illness. She almost got arrested, simply because a bathroom attendant thought she’d been doing lines of cocaine in a public restroom. No… she had been suffering from one of the many symptoms of her fatal disease. It was just one more indignity and inconvenience she had to endure, thanks to being born with a genetic anomaly.

In another passage, Mallory’s mother wrote about how, even though she had a handicapped placard on her car, a tow truck driver in Pittsburgh tried to extort $200 in cash from her. It took the kindness of strangers to prevent him from taking the car and potentially putting Mallory’s life at risk, due to the fact that her necessary medical equipment was in it.

I felt a little guilty about my own persistent bad attitude about life. All Mallory wanted to do was live her life and achieve her dreams. So many of us are born with healthy bodies, and yet we fail to live up to our own potential. And so often, when I read about someone with CF, I read about an extraordinary person who does all they can just to live. I can think of so many people with CF who have achieved the incredible, even though they suffer(ed) from such a devastating disease that robbed them of so much– independence, dignity, normalcy, even the most basic of freedoms. And at the end of her life, after Mallory had had several “dry runs”, waiting for new lungs, she suffered so much that she had brief wishes for death. I almost wonder if it would have been better, and she might have lived longer, if she hadn’t had the surgery. But I know from reading Salt in My Soul, Mallory desperately wanted to try everything.

I guess if I can take anything from reading this book, it’s that you really can do things that seem impossible, if you put your mind to it and set your heart on success. Good health is a priceless gift that more people should appreciate and embrace. So many extraordinary people would love to simply be healthy. For that lesson alone, I think more people should read Mallory’s story. I give it five stars out of five. There’s a link to the book on Amazon at the bottom of this page.

Salt in My Soul has also been made into a documentary, and it can be watched on many of the most popular streaming platforms, including Google Play, Vimeo, and Apple TV, as well as Comcast, Cox, and Spectrum on demand. Below is the trailer for the film.

The trailer for Salt in My Soul.

Edited to add, August 23, 2023: I watched the documentary yesterday. It was well worth viewing. Mallory was such a beautiful, remarkable soul. No wonder so many people adored her for her all too brief life. I highly recommend the documentary! I downloaded it from Apple Plus.

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book reviews, healthcare

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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book reviews, healthcare, history, mental health, politicians

A review of Rosemary: The Hidden Kennedy Daughter, by Kate Clifford Larson…

Amazon.com tells me that I purchased Kate Clifford Larson’s book, Rosemary: The Hidden Kennedy Daughter on October 25, 2015. It was originally published on October 6th of that year, and I believe I bought it based on recommendations from Alexis, who was my #1 reader and commenter for years. I’m sorry it’s taken me almost eight years to finally get around to reading Kate Clifford Larson’s fascinating book about Rosemary Kennedy, and the very dysfunctional Kennedy family. I’m glad I finally sat down and read the book, because it was surprisingly compelling in many “soap opera-ish” ways.

I’ll admit that before I read Rosemary: The Hidden Kennedy Daughter, I knew almost nothing about the Kennedy clan, other than the fact that they were a very rich and politically powerful Irish Catholic family from Massachusetts, and they seemed to be cursed by many tragedies. I never knew just how many tragedies there were until I finally read this book that’s been sitting in my Kindle queue for so long. My mind is blown on many levels.

Who was Rosemary Kennedy?

Rose Marie “Rosemary” Kennedy was born in her parents’ home on September 13, 1918 in Brookline, Massachusetts. She was the third child and eldest daughter of Joseph P. and Rose Fitzgerald Kennedy. Her older brothers, Joe and Jack, were perfectly normal boys, born to wealthy and prestigious parents. Joe and Rose Kennedy would go on to have a total of nine children, eight of whom were healthy, strong, intelligent, and high achieving. Rosemary might have been completely normal, too, except for a terrible decision that was made as she was being born.

On the day of Rosemary’s birth, Rose’s doctor was not immediately available to deliver her, on account of a severe breakout of Spanish flu. The doctor had to be in attendance when the baby was born in order to collect his fee. Consequently, the nurse who was tending to Mrs. Kennedy told her to keep her legs closed and actually pushed Rosemary back into the birth canal. Because of those unfortunate decisions, Rosemary was kept in the birth canal for two hours without adequate oxygen. When the baby was born, she appeared to be healthy and normal, but as she grew, her parents realized that she was not developing as her brothers, and later, her younger siblings, did.

Soon, it became clear to her family that Rosemary had significant intellectual and mental delays. However, because the Kennedys were so rich, powerful, and ambitious, they kept Rosemary’s condition carefully hidden from most people. She was apparently beloved by her family, yet she was also an object of shame for them. Her parents– especially her father, Joe– took great pains to keep Rosemary’s difficulties out of the public eye.

When she was still a child, it wasn’t impossible to hide Rosemary’s condition from the public; but as she grew older, stronger, and wanting more independence, figuring out what to do with Rosemary, and hiding her disabilities from the public, became much harder for her parents. Complicating matters was the fact that physically, Rosemary was very attractive and flirtatious. She enjoyed the company of men, and they liked her, too. The Kennedys were concerned that Rosemary would end up falling into a disreputable lifestyle that would put her in danger or, seemingly worse to them, somehow embarrass the family.

Power parents…

Rose Fitzgerald was a favorite daughter of John “Honey Fitz” Fitzgerald, a very politically powerful Irish Catholic man from Boston, Massachusetts who had served as a Massachusetts State Senator, a member of the U.S. House of Representatives, and the Mayor of Boston. Rose met her future husband, Joseph Kennedy, when she was a teenager vacationing in Maine. John Fitzgerald hadn’t really liked Joseph Kennedy and discouraged Rose from being involved with him. But Rose didn’t listen to her father; the couple were wed October 7, 1914, when Rose was 24 years old.

Joseph Kennedy was quite wealthy, and his wife and children wanted for nothing materially. However, he was very unfaithful and had many affairs, to which Rose turned a blind eye. As I read this book, I learned that Joseph was also very image conscious and ambitious, and he expected his family to present the proper look. Rose Kennedy was also very image conscious and obsessed over her children’s bodies. She weighed them every week, and according to Larson’s book, both parents relentlessly fat shamed poor Rosemary, who had a tendency to gain weight.

Rosemary’s schooling…

Because of her intellectual disabilities, Rosemary Kennedy did very poorly in school. Her reading ability never rose past a fourth grade level. She had terrible penmanship and spelling, even though she apparently enjoyed writing letters. She also had trouble counting.

Although Rosemary was basically sweet and loving, she often had what today we might call “meltdowns”. Because she had trouble regulating her emotions and could not seem to grasp basic educational concepts, she went through a whole lot of different schools. Her younger siblings’ scholastic achievements soon surpassed Rosemary’s, as Rose Kennedy was constantly searching for the right boarding schools for her children. Though the other children were bright, competitive, habitual winners, Rosemary was constantly the subject of anguished letters from harried teachers and headmasters who didn’t know what to do with her.

The family experienced a brief hiatus in their scholastic drama when they moved to England in 1938. Joseph Kennedy was then serving as the U.S. Ambassador to Great Britain, so the family was temporarily based in London. Rosemary was placed at a Catholic boarding school called Belmont House, where she thrived. Unfortunately, the Kennedys had to move back to the United States due to Nazi Germany’s attack on Europe. Although Joseph and Rose kept Rosemary in England for as long as they could, it was too unsafe to allow her to stay there permanently. She moved back to the United States and then seemed to enter a negative spiral. All of the gains she had made at Belmont House quickly vanished as Rosemary became even less manageable.

Another tragic decision– Lobotomy…

Rose and Joseph Kennedy kept trying to find a suitable place for Rosemary. They failed repeatedly. Rosemary’s behavior grew more erratic and unpredictable. While her parents were apparently genuinely worried about her well-being, they also worried about how public knowledge of Rosemary’s condition might affect their political status and business standing.

Joseph Kennedy had heard about a new psychosurgical procedure being offered at George Washington University Hospital in Washington, DC. Psychiatrist Dr. Walter Freeman, and his associate, surgeon Dr. James W. Watts, were developing a technique that supposedly made “difficult” people like Rosemary more compliant and calm. The procedure was called “lobotomy”, and it involved numbing, and then boring small holes at the top and on either side of the patient’s head while they were awake and restrained. Although the vast majority of patients who had lobotomies did not experience good outcomes, Joseph Kennedy was apparently so eager to solve his issues with Rosemary that he eagerly signed her up for the operation. He did not tell Rose or his other children that Rosemary had the surgery until after it was completed in November 1941.

Like most of the other patients who had served as human guinea pigs for Freeman’s and Watts’ research, Rosemary Kennedy had devastating results after the lobotomy. She temporarily lost the ability to walk and talk, and became even more significantly intellectually delayed. Rosemary eventually learned how to walk again, but did so with a limp. She never regained her ability to speak clearly, and her arm was left palsied.

Heartbreakingly, after the lobotomy, Rosemary’s family basically abandoned her to the care of psychiatric facilities and, later, nuns. She very rarely saw her family for over twenty years, until Joseph Kennedy’s death in 1969. At that time, her family began bringing her back into the family circle. In spite of her intellectual and mental health issues, Rosemary Kennedy was very physically strong and healthy. She died of natural causes on January 7, 2005, in Fort Atkinson, Wisconsin. She was 86 years old.

My thoughts on the book…

It may seem like I’ve given away a lot of Rosemary: The Hidden Kennedy Daughter in this review, but actually, I’ve just scratched the surface of this incredible story. Kate Clifford Larson did an excellent job researching this book, and writing a compelling explanation of the Kennedy family. I’ve barely mentioned Rosemary’s siblings, three of whom died tragically young, nor have I shared some of the more shocking and outrageous aspects of this story. I definitely came away with an opinion of Rose and Joseph Kennedy, who gave birth to remarkable children who would shape and influence America, yet showed such crass and callous disregard for Rosemary. Yes, it’s true that some of their actions had a lot to do with the mores of the time period, but a lot of it was also just very cold-hearted and cruel, not just to Rosemary, but also to the people who were tasked with helping her.

I do think that this book is profoundly sad, and parts of it are pretty infuriating on many levels. However, it’s also fascinating, given the historical importance of the Kennedy family and the events that were going on at the time. If you’re interested in American and world history, this book may be a page turner for that alone, as it offers glimpses of the current events of the time, and touches on business, politics, health, and mental health care.

While I definitely think the way Rosemary was treated was cruel, I also realize that there were very limited options for people like her when she was coming of age. That was a time when “defectives” (as they were sometimes called then) were forcibly hospitalized or otherwise locked up, sterilized, and/or kept out of society, and away from their families. Rosemary Kennedy was both blessed and cursed by having such a wealthy family. They could afford to send her to different camps, schools, and hospitals, but they were also ashamed of her, and didn’t want her to “ruin” their financial and political successes.

The Kennedy family was also very deeply entrenched in religion. Larson touches on how Rose Kennedy’s deep devotion to Catholicism caused huge rifts with her children, as she insisted that they adhere to her strict beliefs. If you’re a regular reader of my blog, you might already know how I feel about religion, and parents insisting that their children adhere to their religious beliefs. Rose Kennedy’s use of Catholicism in her attempt to try to control her adult children is bad enough, but Joseph Kennedy’s disastrous decisions made solely to protect his image and career were especially reprehensible. Moreover, both Rose and Joseph Kennedy treated some of the people who helped Rosemary with contempt and a true lack of consideration.

Kate Clifford Larson includes extensive footnotes, photographs, and a detailed bibliography. Some reviewers complained that there were too many resources included, and too little text. Personally, I didn’t have that complaint, but then to me, this book included information I didn’t know. People who already know a lot about the Kennedys may find this book to be repetitive. Some even stated that they felt it was a waste of time to read it. Again– this is my review, and it wasn’t a waste of time for me. It does make me think I might want to read more about the Kennedys, however.

Overall

I’m glad I read Rosemary: The Hidden Kennedy Daughter, by Kate Clifford Larson. I would recommend it to history and political science buffs, but also to anyone who enjoys true stories. However, I would caution readers that this story is pretty sad and infuriating in some parts. Also, I would caution that this book is not strictly about Rosemary Kennedy, but is more from the perspective of her family. You won’t be reading much about what life was like from Rosemary’s perspective, as Larson doesn’t seem to do a lot of original research.

If I had known more about the Kennedys before I read this book, I might have had a more negative opinion of it. But, since I learned new things by reading it, I honestly don’t think of it as a poor effort. Some Amazon reviewers who obviously know more about the Kennedys than I do did take issue with the fact that the book is more about the Kennedy parents and, to a lesser extent, their children, than Rosemary herself.

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