Tag Archives: Stanford University

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.

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

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mental health, psychology

No one should ever die over spilt coffee!

The last couple of years have really been quite the mess, haven’t they? I wouldn’t be a young person in America again for anything, especially in this post pandemic hellscape. Young people are under so much pressure to make it. I remember what it was like to be young and unsure, filled with anxiety and depression, feeling like a failure, and when I was clinically depressed, actually thinking about suicide on a daily basis.

I thought I would be broke and unloved, or working in a job that I hated, desperately trying to earn enough to pay my own way. I went through this anguish for years, only to somehow find myself on a career path to a career I probably wouldn’t have loved that much. Then I met Bill, and was soon swept off that path, and into a new future that I had never, in a million years, envisioned for myself. Even after twenty years, I can’t believe this happened. I never would have thought that the answer for me was finding the right man. That’s not how I was raised AT ALL.

I’ll be honest. There are times when I still feel anxious. There are times when I am depressed. Sometimes I worry about what’s going to happen. Then I am awed by what I have… amazed, even. And I’m glad I didn’t give in to the urge to commit suicide when I was still in my 20s. Then I think to myself… if I had done that, I wouldn’t have been any the wiser about what was to come. My life would have been unfinished, like Neuschwanstein… or an incomplete novel with no ending.

You might already be wondering what’s brought on today’s musings, which some people might find a little disturbing. Well, I don’t assume anyone worries about my mental health, and there’s no reason to do that now. I’m not feeling particularly depressed today. It’s just that this morning, I read a story about yet another high achieving young woman who decided to kill herself over something that really should have been a blip on the proverbial radar.

The Washington Post ran a story today about Katie Meyer, a young woman who, by most accounts, should have been on top of the world. On February 28, 2022, 22 year old Meyer was just a few months from finishing her degree at Stanford University, where she was a soccer star and captain of the university’s soccer team. She had a 3.84 GPA, and in 2019, had helped lead the prestigious university to a national championship in soccer. She had plans to attend law school. She’d hoped to attend Stanford for law school, too.

On February 28, Katie Meyer had done seemingly normal things. She went to classes, soccer practice, and an event for the Mayfield Fellows Program, for which she had recently been selected. She had FaceTimed with her mom and sister about her spring break plans. She had emailed her mother about plane tickets she had booked. She’d never make the flight, though. February 28, 2022 was her last day of life. Katie Meyer committed suicide that day.

So what happened on February 28 that led to Katie Meyer’s untimely death? It started with spilled coffee in August 2021.

On that fateful day in August 2021, Katie Meyer was riding her bike when she somehow spilled coffee on a football player who was accused of sexually assaulting (kissing without permission) one of Katie’s teammates, who was 17 years old. Katie maintained that the coffee spilling incident was an accident. The football player, who was not identified and never faced any disciplinary charges, didn’t even complain about the spilled coffee. However, the incident was reported to Stanford’s Office of Community Standards by the dean of residential education. An investigation ensued, and apparently, for the first time in her short life, Katie Meyer was in some trouble.

The complaint against Meyer indicated that spilling the coffee on the football player had caused physical injury. It was the university’s standard practice to review the incident and determine whether or not Katie should be disciplined. Meanwhile, the incident regarding the football player’s uninvited kiss of the soccer player was also reported to the Title IX office. However, that office determined that the criteria for investigating the kissing incident were not met.

In September, Meyer spoke with a university administrator about the coffee incident. She expressed how distressed she was by the investigation. Two months after that meeting, Meyer provided a formal statement about the incident, again explaining that the disciplinary process had caused her great worry and stress. She feared the incident would derail her career plans and ultimately even ruin her life. According to the Washington Post:

“My whole life I’ve been terrified to make any mistakes,” she wrote. “No alcohol, no speeding tickets, no A- marks on my report cards. Everything had to be perfect to get in and stay at Stanford. I suffer from anxiety and perfectionism, as so many female athletes do. We know all too well that in professional settings women have everything to lose and have to work twice as hard to prove that they are qualified and professional, and any mistake is magnified, any attitude of assertiveness is demonized.”

Man… I can remember feeling like that, too. And I am definitely NOT Stanford material. So often we think of high achievers like Katie Meyer– young, beautiful, brilliant, athletic– richly gifted in almost every way. We think of how lucky they are. We never stop to think about the incredible pressure they’re under and how much pressure they put on themselves. It’s easy for me, at age 50, to sit here and think this is ridiculous that a young woman like Katie Meyer– who seemingly had EVERYTHING going for her– would kill herself over spilled coffee.

I empathize with Katie. I remember very well being young and scared, and feeling like any little mistake I made would permanently ruin my life. I also felt like I needed to excel when I was very young. I felt like it was expected of me, not just from my parents and other elders in my life, but also and especially from myself. Unlike Katie, I didn’t excel at that much. But, like her, I felt like I really needed to achieve, and if I didn’t, my life would not be worth living.

I remember working as a temp in the admissions office at the College of William & Mary, where extremely talented, bright, high achieving young people attended school. I read their essays, letters of recommendation, and report cards, and filed them away, along with lots of other items they sent in to convince the admissions committee that they were worthy to matriculate at William & Mary in the fall of 1998. So many of them seemed desperate to achieve… and unaware that there are so many ways to succeed at life. In 1998, I was 26 years old, a graduate of a less prestigious college, and Returned Peace Corps Volunteer. I felt like a loser, even though I had already done a lot. Depression and anxiety will do that to a person, especially when they’re young.

I was fortunate, though, because I found a really kind and understanding therapist who helped me. I took medication that helped even out my thinking. I took voice lessons, which were relaxing and therapeutic for me… a form of expression that was easy for me and brought positive regard. Gradually, I started to see other pathways out of that hell. It took some time, but I finally moved past that dreaded anxiety ridden state of youth that causes young, ambitious, talented people to consider suicide.

In Katie’s situation, several months passed, and Katie apparently figured the trouble had blown over. She started to relax and look forward to her bright future. But then she got that email at about 7:00 pm on February 28th. She was alone, and when she read the email about disciplinary action toward her, she panicked. Hours later, she was found unresponsive in her dorm room. The email from the Office of Community Standards, informing her that there was a hold on her degree and she could be removed from the university due to the spilled coffee incident, was still open on her computer.

Apparently, Katie had not responded to a February 25th email indicating that more information had been added to her file regarding the spilled coffee incident. The Office of Community Standards had requested more exonerating evidence from Katie by February 28th. She was a very busy student, though, and had evidently missed the email. Since the supporting evidence had never arrived, the university sent the after hours email that left Meyer so distraught that she took that last devastating action.

Katie Meyer’s parents are now suing Stanford University for wrongful death. They maintain that the university had acted negligently and recklessly in the way they handled her disciplinary case. According to the Washington Post:

“Stanford’s after-hours disciplinary charge, and the reckless nature and manner of submission to Katie, caused Katie to suffer an acute stress reaction that impulsively led to her suicide,” said the complaint, filed last week in Santa Clara County Superior Court. “Katie’s suicide was completed without planning and solely in response to the shocking and deeply distressing information she received from Stanford while alone in her room without any support or resources.”

For its part, Stanford University is vehemently denying responsibility for Katie Meyer’s death. In an official statement to the Stanford community, university officials wrote:

The Stanford community continues to grieve Katie’s tragic death and we sympathize with her family for the unimaginable pain that Katie’s passing has caused them. However, we strongly disagree with any assertion that the university is responsible for her death. The complaint brought by the Meyer family unfortunately contains allegations that are false and misleading.

I don’t pretend to know what actually happened in this situation. The description of the coffee spilling incident is not very well explained in the article. Did she go up and hurl a cup of hot coffee at the football player while he was kissing Katie’s teammate? Or was she carrying a Starbucks while riding a bike and hit a bump in the road, causing it to fly from her hands? I can’t tell from the description in the newspaper article. However, whatever actually occurred with the football player, I do know that it should not have led a 22 year old woman with a very bright future to kill herself. I am so sorry for Katie’s parents and other friends and loved ones. But I’m not sure that the university is necessarily at fault, either. I would imagine that most people would not have reacted in such an extreme way to that email.

Extremely competitive universities like Stanford University do attract the best and brightest, and a lot of those students are extreme perfectionists, perhaps even to a pathological level. Maybe at a school like Stanford, it makes sense to be very careful about delivering that kind of bad news– the kind that might threaten a highly achieving young person’s future. However, Katie was 22 years old, which made her a grown woman. She was about to embark on a career in law. I would imagine that she would face some pretty threatening and stressful challenges in that arena, too. It sounds to me like Katie really needed mental health treatment. Perhaps the bigger question is, does Stanford University support and encourage students to seek out mental health services when they need them? Do they try not to penalize students for seeking help when they need it?

This is a topic near and dear to me, because my husband has spent most of his adult life in the military, in which a lot of lip service is paid about people seeking mental healthcare when they need it. However, those who do go to therapy and take medication often wind up being penalized when they lose security clearances or get reassigned to jobs that mess up their career aspirations. A lot of tragedies have occurred because of this policy, that punishes people for seeking help. Hell, in the military, a servicemember can wind up being “punished” even if a family member needs special services for their mental health or educational needs. See my rant about EFMP for more on that.

More recently, I read a Washington Post article about students at Yale University who were kicked out of school for having mental health issues. One student, Rachael Shaw-Rosenbaum, had a very hard time dealing with attending Yale during the pandemic. She needed help, but instead was driven to suicide. The article highlighted other stories of high achieving students being forced to withdraw from Yale after they needed psychiatric care. Some of those students did go on to kill themselves, because they felt like they’d failed and Yale simply wanted to “get rid of them”. Yale University also famously falsely accused a young woman of having an eating disorder and threatened to kick her out of school because she couldn’t gain two pounds. I wrote about Frances Chan, the “fake” anorexic, in my old blog, and since her story is relevant to this post, I will repost my 2014 article about her case today.

Anyway… I think it’s very sad that there’s a population of very bright, promising, young people who feel so overwhelmed, anxious, and depressed that they can no longer bear to go on. I thought it was hard enough in the 90s, when I was staring down the rest of my life, wondering what was going to become of me. At 22, I should have been on the brink of the best time in my life. But instead, I was scared, anxious, depressed, and occasionally suicidal. I feel fortunate that I managed to get through that time. I realize that not everyone can do what I managed to do. They lack the time, the money, the will, or they simply feel like they aren’t deserving. Some of them feel like they should be able to get over mental health issues by themselves. They’ve been taught that they have to be superhuman. But no one is superhuman.

It’s time that Americans stopped stigmatizing people who have mental health issues, especially when they are among the best and brightest. It’s time treatment for mental healthcare was prioritized, and made easy to afford and access. It’s time we stopped ruining people’s lives– or making them think their lives are ruined– simply because they made a mistake or got in some trouble or experience a temporary lapse in mental health due to stress, physical illness, or some other minor setback.

Life shouldn’t be so serious… or so hard, especially for young men and women on the brink of adulthood. No one should ever die over spilt coffee.

My condolences to Katie Meyer’s friends and family members. She sounds like she was an extraordinary person.

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true crime

Repost: Six months in jail and a lifetime in hell…

One more repost today. This is a post I wrote in June 2016, when Brock Turner was in the news. I am reposting this as/is because I mentioned Brock Turner in today’s fresh content and reposted my review of Liz Seccuro’s book, Crash Into Me. Today’s featured photo is a screenshot of Brock Turner’s face on video.

I just read the tragic story about a 23 year old woman who was brutally assaulted and raped behind a Dumpster in California in January 2015.  The woman’s attacker, Brock Allen Turner, was then a Stanford University freshman and a star swimmer.  He had a blood alcohol level twice the legal limit in California and was in the middle of thrusting into his unconscious victim, when he was spotted by two Swedish Stanford graduate students who happened to be passing by on their bikes.  Thankfully, they didn’t hesitate to get involved.  Turner tried to run, but the graduate students tackled him.

Now in June 2016, the former Stanford University athlete has finally had his day in court.  He faced his victim, who read a very powerful letter to him.  And then, Judge Aaron Perskey, handed down an astonishing sentence.  Turner, who had just been convicted of sexually penetrating an intoxicated and unconscious person with a foreign object, was sentenced to a mere six months in jail and probation.  Prosecutors had requested six years in prison.  Judge Perskey cited Turner’s lack of a prior criminal history and said “A prison sentence would have a severe impact on him … I think he will not be a danger to others.”

But he was a danger to one person.  If you haven’t read her letter to her attacker, I highly recommend reading it.  If you are a parent, especially to sons, I would have them read the letter, too.  Rape is too often swept under the rug.  

Brock Allen Turner will serve his time and be out and about again. He may spend six months of hell in jail. His victim has a lifetime of hellish memories to live with. She says she doesn’t remember the assault itself because she was unconscious. What she does remember is waking up in a hospital, her clothes confiscated. She remembers her hair full of pine needles, and cuts and abrasions all over her body. She remembers how the nurses documented her injuries, and being warned that she should be tested for HIV, because sometimes it takes awhile for the virus to show up in tests.

Brock Allen Turner’s victim will then have memories of being in court, being asked very intrusive and pointed questions designed to remove the glare of guilt from the accused. She will remember being asked what she was wearing, how much she was drinking, and whether or not she was sexually active. She will spend the rest of her life remembering how another human being attacked her while she was passed out drunk. It will color her relationships with other people, especially people with whom she will have intimate relationships. It will affect her friends and family and perhaps future children, if she has them. This rape won’t just affect the victim. It will have ripple effects that will affect many people for years to come.

Before I read about Turner’s attack on the unconscious woman, I was reminded of a case from my generation.  Back in the fall of 1990, I was a college freshman in Virginia.  I had a friend who was a student at the College of William & Mary in Williamsburg, Virginia.  This friend and I had grown up near Williamsburg and she had opted to go to school close to home.

My former friend had a classmate at William & Mary who made huge headlines in 1990.  Her name is Katie Koestner. Koestner made the news when she went out on a date with a guy who raped her in her dorm room.  When she sought justice, she was basically brushed aside by the powers that be.  She fought back and was later pictured on the cover of Time Magazine.

I remember my ex friend making disparaging remarks about Katie Koestner. A lot of people at William & Mary were upset because she was demanding justice and “cheapening” their degrees by making William & Mary “known” for rape. William & Mary is an excellent school, and it’s the second oldest university in the United States. I worked in their admissions office as a temp for awhile and saw the applications from would be students. It was 1998, a full eight years after Koestner’s rape. Plenty of people still sought admission and thought of the school as outstanding. I’m surprised at how stupid Koestner’s classmates were in their assumption that Koestner’s decision to report her rape makes their college less desirable. In any case, many people seemed to think Koestner was making much ado about nothing and seeking attention.

Years later, when I was a graduate student at the University of South Carolina, Katie Koestner came to speak on campus. I went to her presentation and was very impressed by her. In fact, of all the people in the crowd that evening, I may have been one of the most affected. I am the same age she is, and I remember when her story was daily news. Like Elizabeth Smart, Katie Koestner has turned her victimhood into something positive. She now speaks about rape to college students.

I have been fortunate.  I have never been raped.  However, I have friends and loved ones who have suffered rape.  Without going into too much detail, I want to remind people that it’s not just women who are rape victims.  It happens to men, too.

Rape has ripple effects, just like any violent crime against a person does.  It’s one thing if someone steals your iPod.  It’s quite another if they steal your virginity, your sense of security, or your self worth.  The physical injuries may heal, but the emotional and mental injuries can last a lifetime.  Brock Turner will get his six months in jail, but his victim is likely to spend a lifetime in hell every time she remembers what she’s been through.  That seems terribly unfair to me.

ETA:  Not long ago, I reviewed Liz Seccuro’s book, Crash Into Me.  Seccuro was also raped at college.  She was a student at the University of Virginia in the mid 1980s and her case was similarly treated with suspicion and disdain.  I highly recommend her book.  It provides a valuable empathy check for those who want to discount rape.

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