#16 Does power corrupt? Maybe. Probably.

 

            Lord Acton famously wrote in 1887 that "Power tends to corrupt, and absolute power corrupts absolutely.  Great men are almost always bad men."  Most of us are familiar with the dictum.  Fewer are aware of the context, and probably even fewer know that there has been a modest amount of research to try to ascertain if Acton was correct.  (No, the topic didn't arise for me because of the 2016 U.S. elections.  I've long been curious about and intrigued by the claim.)

            "The historian Henry Adams was being metaphorical, not medical, when he described power as 'a sort of tumor that ends by killing the victim’s sympathies.'"

            John Emerich Edward Dalberg-Acton, 1st Baron Acton, 1834-1902, was an English Catholic historian, politician, and writer.  The "Catholic" part of it is important.  One thing I learned about him, in doing some reading, was that he was a strong supporter of the South in the (American) Civil War.  He believed in state's rights; as an historian, he had come to distrust centralized governments and believed that the U.S. would eventually become tyrannical.  According to Wikipedia,

After the South's surrender, he wrote to Robert E. Lee that "I mourn for the stake which was lost at Richmond more deeply than I rejoice over that which was saved at Waterloo," adding that he "deemed that you were fighting battles for our liberty, our progress, and our civilization."

There are other reasons not to admire Acton that don't warrant exploration here—but there are also good reasons to admire him that also don't need elaboration here.  (For example, in a major lecture he proclaimed that "opinions alter, manners change, creeds rise and fall, but the moral law is written on

the tablets of eternity."  He knew what that moral law was.  Few in any field would make that kind of claim today.)

            Acton was deeply involved in the affairs of the Catholic church, including editing a monthly Catholic publication.  He traveled to Rome for the First Vatican Council (1869-70) to lobby against the doctrine of papal infallibility; he "was influential in formulating the case against infallibility, publicizing it within the council and to the outside world, and coordinating the activities of the minority of bishops who opposed the doctrine," according to the conservative historian Gertrude Himmelfarb, who wrote a book on Acton.  His views did not prevail; the Church reified papal infallibility (on matters of church doctrine) at the Council in 1870 (and Acton was nearly excommunicated, but for the intervention of powerful friends, Himmelfarb reported).  It was in the context of debates about papal infallibility that Acton wrote about power, in a letter 17 years after the Vatican Council, to a scholar colleague.  Not only did he pen the dictum about power corrupting, there was another, equally interesting claim. 

I cannot accept your canon that we are to judge Pope and King unlike other men, with a favourable presumption that they did no wrong.  If there is any presumption it is the other way, against the holders of power, increasing as the power increases.  Historic responsibility has to make up for the want of legal responsibility.  Power tends to corrupt, and absolute power corrupts absolutely.  Great men are almost always bad men, even when they exercise influence and not authority, still more when you superadd the tendency or the certainty of corruption by authority.  There is no worse heresy than that the office sanctifies the holder of it [emphasis mine].

That last is an assertion with which many Americans would probably take issue.  I do not.  I think it should be widely broadcast.

            Now, as for research.  The first question is "why bother?"  The authors of one of the articles, Bendahan et al (2015, so quite recent), that explicitly mentions Acton explain why (citations omitted).

Leaders wield power and can have important consequences on outcomes whether in micro- or macro-organizational settings.  The hierarchical nature of organizations, rooted in status and power differences, results in political tensions, power asymmetries, and conflicting interests.  These dynamics raise an important question . . . :  Do those with power use it in ways that serves the greater good or do they succumb to its corruptive effects?

They go on to point out that the relationship between power and corruption has been the subject of debate since antiquity (e.g., Plato's philosopher kings) because of the effect corruption can have on organizations and economies and because leaders often shape or at least affect culture.

Basic research findings at the individual leader level thus have important policy implications for institutions, which would want to ensure that they have the necessary safeguards so that leaders use power in prosocial ways. That power may corrupt is indeed possible; however, it is also equally possible that those who are corrupt "at heart" may seek power.

They summarize the results of earlier studies. 

Overall, it appears that those who have power rationalize and legitimize its discretionary use to maintain social status differentials; in essence power appears to make individuals self-serving.  There are several mechanisms that give us reason to believe that power may corrupt.  Power appears to engender a sense of entitlement, emotional disengagement, and self-interest.  In other words the powerful see the less powerful as less worthy and evidence also suggests that the powerful may even become more prejudiced; they also tend to stereotype the less powerful.  In addition, the powerful tend to become very self-centered.  Experimental studies show that powerful individuals tend to ignore the advice of others and demonstrate reduced perspective taking. . . .  It also appears that power makes individuals overconfident; such findings suggest that those who are powerful may be prone to engaging in more self-serving behavior and somehow feel immune to sanctions. . . .  These psychological channels imply that those who have power may be blinded to social norms, behave in socially inappropriate ways, feel superior to others, and fail to see wrong from right; additionally, those with power will disregard others and see them as means to satisfying ends.

            Other than that, there's nothing wrong with power.

Psychologists, however, are not of one mind about the accuracy of Acton's assertion.  A U of California-Berkeley psychologist did some experimental as well as observational research.  After a near-serious accident, in which a very expensive Mercedes almost ran over him, Professor Keltner speculated about whether there was a difference between drivers with really expensive cars—and presumably thus from wealth and positions of authority—and those who didn't have such cars.  So he sent students out to observe traffic in Berkeley.

The results couldn’t have been clearer.  Mercedes drivers were a quarter as likely to stop at a crossing and four times more likely to cut in front of another car than drivers of beaten-up Ford Pintos and Dodge Colts.  The more luxurious the vehicle, the more entitled its owner felt to violate the laws of the highway.

I don't know about you, but this finding is in line with my observations over many years about the people who drive Cadillacs and Lincolns.

            So then Keltner did some lab experiments. 

The results all stacked the same way.  People who felt powerful were less likely to be empathetic; wealthy subjects were more likely to cheat in games involving small cash stakes and to dip their fists into a jar of sweets marked for the use of visiting children.  When watching a video about childhood cancer they displayed fewer physiological signs of empathy. . . .  Similar results occurred even when the privilege under observation had no meaning beyond the experiment room.  Rigged games of Monopoly were set up in which one player took a double salary and rolled with two dice instead of one:  winners failed to acknowledge their unfair advantage and reported that they had triumphed through merit.

            There are earlier studies, although not laboratory experiments.  C. Wright Mills wrote one of the most well-known, The Power Elite, in 1956, "an account of American society that shocked a generation:  partly because it suggested the country was controlled by self-sustaining cliques of military, political and corporate men."  A refugee from Lenin's Russia, founder of Harvard's sociology department, wrote, shortly after Mills, that "Taken as a whole, the ruling groups are more talented intellectually and more deranged mentally than the ruled population."  Similarly, a guy in business psychology, after interviewing American business executives, found that "most professed that they treated colleagues with suspicion, regarded friendship as a weakness and allowed self-interest to govern their behaviour."  Then the Stanford prison experiment, by Philip Zimbardo, led to the proposition that the corruption of power is situational, not individual.  (Students were divided into guards and prisoners; over a couple of weeks, the guards became brutal, the prisoners submissive, and Zimbardo had to stop the experiment because the situation was getting out of hand.)  There remains debate about what or how much one can infer from Zimbardo's experiment, but it highlighted Acton's proposition that those with power behave badly. 

            Some don't like the conclusion.  Keltner learned that some believe "the world only progressed through the efforts of superior people . . . and there are a lot of people who are committed to the idea that the powerless are mentally deficient."  He tells companies and governments "that too much power is bad for individuals, bad for society, bad for commerce. They’re not always pleased to hear it."

            On a little bit further reading, I discovered a summary of the work of Sukhvinder Obhi, a neuroscientist at McMaster University.  He looks at brains, not behavior.  He did work with neural stimulation, with subjects who were both powerful and not, and "found that power, in fact, impairs a specific neural process, 'mirroring,' that may be a cornerstone of empathy."  Those with power can lose the ability to mirror; Obhi hypothesizes that there are permanent neural changes in those who hold power for any length of time, and their sensibilities to those around them diminishes.

            Lord David Owen—British foreign secretary and member of Parliament, but before that a neurologist—examined "the various maladies that had affected the performance of British prime ministers and American presidents since 1900."  Some had identifiable problems (stroke, substance abuse), but, he argued, "at least four others acquired a disorder that the medical literature doesn’t recognize."  He and a co-author describe it as the "Hubris syndrome, . . . a disorder of the possession of power, particularly power which has been associated with overwhelming success, held for a period of years and with minimal constraint on the leader.  Its 14 clinical features include:  manifest contempt for others, loss of contact with reality, restless or reckless actions, and displays of incompetence."

            Other academics looked at power and corruption as well.  Some reached a contrary conclusion, based on large data sets rather than experiment and observation.  "Privileged individuals, the data suggested, were proportionally more generous to charity than their poorer fellow citizens; more likely to volunteer; more likely to help a traveller struggling with a suitcase or to look after a neighbour’s cat." 

            Who knows why these results are different.  It may be deception on the part of the wealthy and powerful; it may be a difference in methodology (relying on self-reported survey information rather than experiment and observation).  Or the experiments may not be getting at the issues.  Keltner believes his results have been replicated many times; he believes power does indeed corrupt.

            The group I cited earlier, Bendahan et al, did a careful literature review and conducted sophisticated experiments.  Here's what they concluded.

The results of our experiments suggest that both the situation and the person predict corruption.  As expected, power affects individuals in a way that makes them behave antisocially.  Leaders who received additional power and more discretionary choices, whether in one-shot decisions or in repeated choices over time, were more likely to profit from their power and . . . to violate the very social norms to which they had subscribed. . . .  It seems that individuals given power somehow become inoculated against the psychological costs incurred for violating social norms, and are more likely to benefit themselves while destroying public wealth.

            A friend of mine who worked at the executive level doesn't agree.  He and I exchanged emails about power and corruption; he had a very different view, based on his experience.

I met and had dealings with many [individuals with power] on boards and organizations. . . .  With very few exceptions, I found them to have qualities the opposite of most of the negative ones noted in the studies. 

An observation I made long ago, and have found reinforced time and again, was that it seemed the more successful one was, the more kind, empathetic, nonjudgmental, trustworthy, loyal, helpful, friendly obedient, cheerful, thrifty, brave, clean, and reverent they seemed to be.  During the journey to success they may have been bastards, but somewhere along the line success freed them. 

A lot of those successful and powerful people who came into my orbit were Midwesterners at heart, and I do think there is something to that. Garrison is right, after all.  Nevertheless, I have noted a difference in the work ethic and personalities of different parts of the country.  

My personal experience has led me to believe that once powerful people have "arrived", they often exhibit a gratefulness, or great fullness, about their station in life, and many try to help others.  On the other hand, I could just be a cockeyed optimist or delusional.

When it comes to the negatives your preview documented, I couldn't help but think that you could put Donald Trump's name down time and again and the personification of all those negatives.

            Pursuing my friend's different take and experience would require a far deeper dive into the literature than I want to undertake (at least for the purpose of this letter).  Moreover, there's no guarantee that the questions he implicitly raises, such as whether there is a difference between a political context, a private-sector context, and a private non-profit sector context.  In my experience at a university, and in conversations with college presidents around the Twin Cities, I would assert that the executives in such organizations really don't have a lot of power (not as most people would understand the term, anyway)—and they say so themselves.  A college/university president can give orders to do something—and it may or may not happen.  I don't know if that's true in other parts of the non-profit sector (e.g., hospitals, churches at a level below the Vatican—the original source of Acton's irritation—social service organizations, K-12 schools).  In many such organizations, power is dispersed across offices and levels.

            (There is a story, perhaps apocryphal, about Dwight Eisenhower when he was president of Columbia University after World War II (1948-53).  One time he supposedly exclaimed in frustration something to the effect that when he was Supreme Commander of the Allied Forces in Europe, he would give an order and everyone would jump to obey it, but as president of Columbia he would give an order and nothing happened.  There is another story, retold in our local newspaper, that "President Harry Truman famously predicted of his successor, Dwight Eisenhower:  'Poor Ike.  He will sit here and say "Do this!  Do That!" and nothing will happen.'")

            There is research support for my friend's views and experience.  In an article in Nautilus this year, science writer Matthew Hutson began by quoting Michelle Obama about decisions; "'At the end of the day . . . when it comes time to make that decision, as president, all you have to guide you are your values, and your vision, and the life experiences that make you who you are.'  Research in cognitive science reveals the former First Lady is right:  Power exposes your true character. It releases inhibitions and sets your inner self free.  If you’re a jerk when you gain power, you’ll become more of one.  If you’re a mensch, you’ll get nicer."

            Citing a variety of research, Hutson drew a number of conclusions.  He first reported that "psychologists generally define power as control over others, by providing or withholding resources, without social interference."  (That isn't the usual definition in the social sciences, but whatever.)  The research findings suggest that

power . . . makes people more likely to act on their desires. . . .  When working with others, the powerful are also more likely to voice their opinions. . . .  We are less deliberative and more persistent in pursuing our goals when we gain power. . . .  Overall, power makes us feel authentic. Power’s effects on expression result largely from the fact that it frees us from dependence on others, allowing us to ignore their concerns and pursue our own objectives.  Intoxication from power leads us to focus more clearly on whatever goal we have in mind. With clear focus on a goal, we then pursue it.  Those goals are often selfish, which would seem to support the historian Lord Acton’s dictum that "Power tends to corrupt, and absolute power corrupts absolutely."  But it’s not that simple.

 A business school psychology faculty member at Emory University maintains there are four groups of traits that drive the nature of someone's leadership:  "personality, individualism, values, and desire for power."  "Narcissism and Machiavellianism are stoked by power. . . .  [But] ethical leadership, on the other hand, arises out of several positive personality traits."  Probably not surprising, "honest, humble leaders were more ethical than others, while agreeable leaders were more supportive."  Interestingly, people who feel guilt are also more likely to be rated as better leaders.  Those who were more concerned about the success of a group were also more effective and less obnoxious than someone with a more individualistic approach; the latter tended to engage in "more abusive behaviors."  One thinks of cardboard characters like John Galt.

Lord Owen, incidentally, found little interest in businesses in studying power and the hubris syndrome—and not much more interest in business schools.

There are also cultural differences.  It appears that Hispanics are more focused on the collective; European Americans tend to use power to take advantage of others and evidence increased selfishness.  Asian Americans felt increased responsibility and decreased selfishness when they acquire power.  One's individual values also affect how power is used; if someone downplays the virtues of being fair, kind, and honest, they're more likely to abuse power.

There are, of course, multiple personal and contextual factors involved in most behavior.  But correlations between character and power are clear. Ethical and responsible power holders tend to be agreeable, honest, humble, and cooperative.  Their counterparts are narcissistic, Machiavellian, and socially dominant. . . .  Seeking power is not necessarily bad.  What matters is whether someone craves the freedom to reap selfish rewards or feels a duty to shoulder social responsibility.

            Naturally, the question arises in politics about how someone will exercise power.  The Emory University researcher observed that "when that someone is a politician, say a presidential candidate, he or she can be especially tricky to diagnose.  'With presidential candidates it’s hard at this point to get anyone to say anything that is from the heart. . . .  But one of the things we can look at is, When you weren’t running for office, what were you doing with your life?  Was it working for organizations that benefit you, or working for organizations that are intended to benefit a broader constituency?'"  Draw whatever conclusions you wish about Mr. Trump.

In short, when people obtain power, don’t expect them to behave dramatically differently from how they behaved before. Nice people don’t suddenly become tyrants, and jerks don’t automatically become servants. How people behave when few people are watching them is a good indicator of how they’ll act when everyone is.

I want to note that, as with a number of the topics I look at here, there is a significant amount of research, more than I can possibly read, much less summarize.  Given that, and more from history than research, on balance I think Acton was correct.  The problem that Acton identified, in my view, is who it is that obtains power and how they get it.  "Nice people don't suddenly become tyrants"—but if I had to guess, I would guess that nice people also don't obtain power as often as those who are not nice.

no # Krystin memorial

(Memorial card and photo courtesy Krystin's lifelong friend Christine Lenzen)

REFLECTIONS AND MEMORIES ABOUT MY DAUGHTER KRYSTIN:

THE GOOD, THE BAD, THE HAPPY, THE SAD

AND MUCH THAT'S IN BETWEEN

I realized that Krystin was in half my life:  I was 33 when she was born and 66 when she died.

          Some of the paragraphs that follow may seem depressing, overly-focused on Krystin's diabetes.  I want to emphasize at the outset that we had many, many good times with Krystin throughout her life, from infant to adult.  As a number of her friends wrote, she had a marvelous if quirky sense of humor and she loved to laugh.  While the diabetes played a large role in her relationship with Pat and with Kathy and me, it was by no means the totality of the relationship.  Of course we saw more of the effects of diabetes and the interactions with the medical establishment because that's what family is for and because we had, with her, been dealing with the disease since she was 4 years old.  But in our travels and events together, we had countless times of joy and happiness, some of which I will recount.

          There's no logical starting point for this narrative so I'll start with her birth.  It won't be a biography, just bits and pieces, somewhat stream-of-consciousness.  I will also draw on the start of an autobiography that Krystin wrote in 2007, on a small tablet of yellow paper, while she was at Remuda Ranch in Arizona (a program for young women with bulimia and anorexia—more on Remuda later).  She labeled it "DRAFT Life Story."  (There will be more on Krystin's propensity to write later in this narrative.)

          Krystin was contrarian from the very beginning:  she wouldn't be born.  Pat (Krystin's mom, my wife from 1982 – 2007, and with whom I'm on excellent terms, just to put any question to rest) was overdue.  It was clear that Krystin was full term, but she declined to come out.  I received a call in my office from Pat, perhaps Thursday or Friday October 25 or 26, 1984; she told me that the physicians had determined that they should do a C-section if Krystin wasn't born soon, and they would schedule it for the following Wednesday.  To her astonishment, I said, in vigorous terms, "absolutely not!"  Pat was taken aback. "Did you look at the calendar," I asked?  "If the date is going to be a matter of choice, I do *not* want to her birthday to be Halloween!"  Pat hadn't realized that.  As it turned out, Krystin finally decided to be born on October 30.

          Krystin (and Pat) stayed at the "Hotel Fairview Hospital" for a week after Krystin was born.  Krystin's 2-minute Apgar was 2 (regarded as critical); her 5-minute Apgar was 8.  She was full term but very small and required medical attention for several days.  But she came out of the hospital a healthy baby.

          Pat and I had a long-time close friend, Maxine Nathanson, who served as executive director of the Citizens' Committee on Public Education, a watchdog group that monitored the Minneapolis Public Schools.  While Pat and Krystin were still in the hospital, Maxine came to visit.  Only family members were allowed to visit the neonatal care unit; Maxine marched in, announced she was Krystin's grandmother, and the staff (perhaps perplexed) let her in.  She held Krystin and said every kid needed a Jewish grandmother and a booby nosh.  She loved Krystin.

When Krystin was little, she generally preferred to be left alone to calm herself.  It seemed like close contact from us over-stimulated her and put her into an emotional crisis.  She didn't like to be held or cuddled.  She had from the beginning what I might describe as a prickly personality.  She also cried a lot, including when she awoke in the morning, which upset both Pat and me, and we never did get any good pediatric advice about what to do.  We tried everything.  I wrote in 1999 that "the behavior or interaction pattern that evolved between Krystin and us was one of distance and continued guerilla combat, interrupted by occasional periods of calm and closeness."  

Fortunately, as she got older, she became more fun to have as a child.  She sure didn't make us want a second child if we were to get another one like her!  (We did want, and did have, a second child, whose disposition was almost the complete opposite.)  In retrospect, even in 1999 when Pat and I made some notes about Krystin's early childhood, I think we could have given her more attention even though she often pushed back.  (Did this "bumpy" early childhood affect who she became as an adult?  If it did, in one sense it wasn't a negative effect, given what people thought of her as she grew up, but in another it perhaps contributed to her inability to deal effectively with her diabetes.  But the arrow of causality may run the other direction.)  One can always look back and wonder what might have been done different; in our case, I think it's fair to say that Krystin was a difficult toddler and we were not the best parents in the world for dealing with her. 

          After Krystin was born, we put her in daycare (because Pat worked, and made significantly more money than daycare cost).  Everything we could discover suggested there was no identifiable downside to daycare and there were positives if the setting was of good quality.  (I am not asserting as fact the pluses and minuses of daycare, whatever they may be—only reporting what *we* found at the time.)  It was certainly to Krystin's advantage to be in the daycare center she was in for most of the time prior to kindergarten—because it was there she met her lifelong friend Christine Lenzen, at about age 2.  (Christine, to her credit and sorrow, played a central role in arranging some of the details of the open house we held after Krystin died, 30 years after she and Krystin met.)  Here are the two of them; Christine was on an overnight with Krystin.

[Christine's narrative about this picture:  "so as the story goes. . . Krystin and I met each other when we were two at preschool. one of the first nights my parents and I went to her house to have dinner with her family, they let us run around the backyard while they sat inside and drank cocktails, or whatever. They had the best backyard - a tire swing, no grass, and a kiddie pool. I run into the house covered in mud yelling something about needing to see krystin at her mom, while her mom is yelling about me being all muddy. Well, we end up ditching the suits and swinging on the swing sets buck-ass naked. That's the stuff friendships are formed out of."]

(Many years later, 2009, at our house, Krystin with Christine and

Christine's mom Peggy, who adopted Krystin's cats.)

          Maxine lent us assistance when it was time for Krystin to begin school.  Krystin was assigned to the neighborhood school, Howe, which at the time had a terrible reputation.  More important, the other school close to us, Dowling, was the only one in the area that had a full-time nurse—which we wanted because Krystin had by that time been diagnosed with diabetes.  Dowling was built as a school exclusively for kids with physical disabilities (FDR came to the opening).  In later years it also admitted students without disabilities, but those with disabilities still had first choice for admission.  We argued with the school board authorities that Krystin had a physical disability—diabetes—and should be enrolled at Dowling, not Howe. At the time, the school authorities didn't consider diabetes to be a disability.  Maxine intervened, and Krystin was admitted to Dowling.  (Quite apart from the issue of a full-time nurse, Dowling was considered a superb elementary school and sits on several acres of wooded and park land overlooking the Mississippi River.  It is surely one of the most beautiful urban school settings in the U.S.  Because the schools at that time allowed sibling preference, Elliott got to go to Dowling as well.)

          Krystin, when a toddler, was being contrarian one time at a family gathering one time.  Pat's father/Krystin's grandfather just looked at Pat and said something to the effect that "you deserve her.  There is one word to describe her: defiant."

          December 23, 1988, is a date that Pat and I look back at with pain and dismay.  I spent the day—literally almost the entire day—getting my great aunt Inez involuntarily admitted to the psychiatric ward of the University hospital.  That's a long story, not pertinent here, but it was my day.  That same day Pat spent much of it with Krystin at doctors' offices, ending with a diagnosis of diabetes.  This was before the age of mobile phones, so we didn't know what the other was going through.  (Inez went into a nursing home and died in May of 1989.  Pat and I bought the house from her estate.  My siblings and I were her sole legatees; we bought out my brother's and sister's interest and I have lived there ever since.  It's the house Krystin grew up in, from age 4½.  That wasn't a good summer for us, either; my mother was diagnosed with uterine and lung cancer in July and died in September.)  One of the most obnoxious statements I have ever heard come out of a physician's mouth was the one uttered by Krystin's endocrinologist after the diagnosis (this isn't a direct quote, but it's very close and may be exactly her words):  "your daughter has died and you have a new daughter that you have to treat very differently."  I should have written to the head of the clinic expressing outrage at such a horrible statement.

          Why or how did Krystin get diabetes?  We don't know.  There's no family history on either side back to Krystin's great-great-grandparents (and both in their generations and before as well as long after that, people just died from it; they didn't have descendants).  Her endocrinologist's best guess was a virus, perhaps a flu virus, that caused an autoimmune reaction, caused Krystin's body to attack its pancreas.  She said she had twice as many childhood-onset cases of diabetes that fall as she'd ever had before.

          When you combine "defiant" with a disease that requires constant attention, you have a prescription for trouble.  That is precisely what happened as Krystin got older.  But that's not the whole story.  The evolution of her life had a significant effect on her behavior, if her own words are to be believed.  More on that anon.

          Krystin loved sports when she was young.  To the extent one can attribute childhood interests to a parent, Krystin's attraction to sport was all Pat.  I never liked sports and was never an athlete by any definition of the term.  Pat was and enjoyed participating; Krystin took after her.  At 8 years old, she participated in both ice hockey and gymnastics, although she dropped the latter after a short time.  As she wrote, "too much leotard and not enough aggression for me."  The ice hockey was played under the auspices of the Minneapolis Park and Recreation Board, and Krystin's team (and others with girls) were the first girls teams the Board had sponsored.  Krystin also picked up soccer at about the same time, and played that into high school.  It was at this period of her life that I figured out I enjoyed watching her hockey games and found her soccer games to be amazingly dull (sorry about that to all the soccer lovers in the world).

[Krystin is first row, second from right.  Christine is second row, farthest left.  Several of these girls were at our open house for Krystin]

          One of the mysteries of Krystin's life was a major change in her interactions with the world.  I won't say a change in her personality because I don't believe people can change their basic personality.  It's the issue of the arrow of causality.  But change she did.  Krystin had an explanation of what happened.

          When she was quite young, she "developed a bad habit:  stealing.  Whether it was money or things, it didn't matter.  I don't know why I did it.  It's not like I needed the money and it's not like I needed the object, it was more I wanted it."  She related that she stole from her parents (we knew that at the time and tried to deal with the issue), friends, and others.  It was when she was caught, in sixth grade, with something she'd stolen from a classmate, that her life changed.  Classmates, she wrote, "took the opportunity and ran with it.  I was teased, made fun of, called names, and all-around emotionally stomped on."  At this point she felt worthless and hated herself.  "I became reserved, withdrawn, quiet, and shy.  Why would anyone wanna socialize with me?"

          I can remember one episode of her stealing.  (Well, I can remember several.  For a time I could never leave my wallet where Krystin might find it.)  At least we think it was stealing.  We were at a Toys 'R' Us store.  Krystin had been wandering around apart from us and then appeared with a $50 bill in her hand.  She said she had found it.  Pat and I were skeptical, but we couldn't figure out where she would have gotten it unless she went into some woman's purse or something.  We brought the bill to the cashier and told her Krystin had found it.  The cashier put it in an envelope and said if nobody claimed it, Krystin could have it.  A week later no one had, so Krystin got the money.  Typical Krystin, what did she do?  Bought presents for her brother and all her friends.  I think she spent very little of it on herself.

          This situation vis-à-vis her classmates continued into middle school because many of the kids in her elementary school (through sixth grade) also went to her middle school.  "They were more than willing to share with everyone else all the gossip on me.  Now I began getting crap from new kids as well."  She did manage to make a couple of friends in middle school, friends she still had when she wrote her draft autobiography nearly 10 years later.

She correctly (from my viewpoint) understood that "prior to this time, I was a very different person.  I was the kind of person I wish that I could be again.  I was extraverted, energetic, a social butterfly, a rebel, a wild child.  I was fun, and I had lots of friends."  She was also "nerdy," she concluded, and had big glasses and clothes that weren't stylish. 

No surprise, Krystin "hated middle school.  They were the worst years of my life."  What she wrote next bothers me, although there wasn't anything I could do about it.  "I never told my parents or anyone about all this until later, after I was in high school."  Fortunately, the climate for her changed in high school, which she loved.  (It helped that the majority of her middle school classmates went to another high school, she wrote.)  She also tried to continue her athletic activities (soccer and ice hockey) but dropped them because, in the case of soccer, "I knew I loved to play but wasn't the most exceptional player, and hated to practice."  She related that when she tried out for a city girls hockey team, she "was the worst one at try-outs because I hadn't played in a couple years.  So on the first day of tryouts, which also happened to be my birthday, at break time I faked a migraine and called my parents and told them I was ready to go.  So we went out to dinner."

Is it usual for someone to enjoy participating in sports to have zero interest in following sports teams or individuals later in life?  Once she was no longer playing, Krystin had almost no interest in athletics.  Once in awhile she'd go to a University hockey game, if a friend offered her a ticket, but she was a lukewarm fan and I don't believe she followed any teams.  (She did love to watch the Olympics, but I think that's true of many Americans who aren't otherwise sports enthusiasts.)

Krystin thought her self-confidence and self-esteem increased some during high school, a time when she also made many new friends.  "But although I no longer had to put up with verbal abuse on a daily basis, . . . it still stuck with me in my mind, and does to this day.  I will never be able to go back to being the kind of person I was before because I was just emotionally damaged too much."  Written in 2007, I wonder if she didn't "go back to being the kind of person I was before" more than she realized, that she had more strength than she gave herself credit for.  The many comments from friends after her death (some excerpted below) don't suggest a recluse.

At one point during late middle school/early high school, we (with Krystin's consent) talked about her living away from us for a period.  I wrote to one of her (many) therapists to tell her that something about the environment in our home seemed to be toxic for Krystin.  Our relationships were sour, she wasn't doing well in school, and life at home was pretty miserable.  We had conversations with friends and family about Krystin living with them for awhile.  They came to naught, and I think because we ended up somewhat chastened by them; in the end, we decided we were *not* giving up our daughter.  But given what had been going on in school (which, as Krystin related, she didn't tell us about) and at home, I now realize that must have been a wretched time of Krystin's life.

One of the therapists who saw Krystin during this period administered a battery of psychological tests, including an IQ test.  I've not mentioned before the results of the test, but I think it does no harm now.  Her tested IQ was 114, so she was no dummy (not that I ever thought she was).  She's the only member of her immediate family that had an IQ test and a number.  (I caution again, as I always do when people talk about IQ, that what IQ tests measure best is the ability to take IQ tests.  There's a strong correlation with "success" in life, but it's statistical—for large groups.  It's only a weak predictor of success for individuals.)

When in high school, Krystin also decided to try an insulin pump because it was easier than giving herself shots.  "But I hated it.  It would beep in the middle of class, due to being low on insulin or a kink in the tubing, and I hated leaving something connected to me and in me 24/7."  So she stopped wearing it, "sometimes for days at a time.  At school it would sit in my locker." 

This is the point at which she developed an eating disorder, known as diabulimia, she wrote, because "over a period of months of not getting a sufficient amount of insulin, I noticed that I was still eating whatever I wanted and in whatever quantity, but my weight wasn't going up.  Actually, it was going down."  She knew that the lack of insulin meant the food she ate wasn't being broken down into the sugars her cells needed, so would just pass through her—she was "starving my body."  But she liked the way she looked, because "all the other girls in my class were thin with flat stomachs and lean legs, and with the right clothes I could pretend that underneath them I could look like that, too.  I could look like the kind of girl that wouldn't have been teased and made fun of in middle school."  She felt better about herself and continued to use insulin as a tool for weight control (by not taking it in sufficient amounts).

Krystin began college at the University of Minnesota, Morris, in the fall of 2003.  She loved college and the independence (although confessed that she was homesick every weekend to start with and missed her parents—at least that made me feel better!).  She made a lot of new friends and told us often about how she was enjoying living in the residence hall.

At the same time, her diabetes management grew worse.  She correctly remembered that "in November 2004 it all caught up with me."  She was home the weekend before Thanksgiving, during which she felt sick, and by Sunday in the middle of the night (early Monday), she felt bad enough that she woke Pat up.  Pat called urgent care; they said bring her to the ER immediately.  She was put instantly in a room and hooked up to IVs.  She didn't remember anything "until about Tuesday, because I was in a mild coma-like state.  Turns out I went into diabetic ketoacidosis, where ketones have built up in the blood and have started spilling out into my system, poisoning my body and shutting it down."  The physician told her that had she not come in when she did, she would have died within an hour.  She was in the hospital for five days, released on Thanksgiving day.

I can't speak for Pat, but this was the first time I really panicked about Krystin's diabetes.  We had been deeply worried for a long time, and had spoken repeatedly (ad nauseum) to both Krystin and her physicians.  But there had been no near-fatal incident.  The physician told her (in my presence) that she only survived because she was young.

Her diabetes management improved for awhile, she recalled, but then she let it slip once again.  She made it through two more years at Morris, just getting passing grades, but "I still loved college and all the people I lived in the dorm with," even though she slept much of the time.  I remember shortly after she returned from Morris, when I was at the doctor with Krystin, that he was astounded she had made it through two and one-half years of college at Morris, given the extremely high blood glucose numbers that she'd had (the result of not taking enough insulin).  High numbers typically inflict a lack of attention, a sick feeling, sleep, and general health conditions that make academic study difficult at best.  It was an odd tribute to Krystin:  she felt lousy much of the time but still studied enough to accumulate college credits.

I was granted a semester leave to work at the University of Edinburgh in the spring of 2006.  So Pat, Krystin, Elliott, and I packed up and moved to Scotland for four and one-half months.  A friend of Krystin's came along, Mike, and the two of them spent much of the time traveling around Europe.  "We hit about 11 countries altogether.  And for 4½ months I didn't do my insulin.  Maybe a few shots a week."  The end of that story was another trauma.

Krystin was to meet the three of us at the pyramid in front of the Louvre, in Paris.  She didn't show up for lunch, the appointed time, but we knew she was on a bus ride from Warsaw, Poland, and certainly things could have gone awry on that kind of trip, so we weren't too worried.  "I left Warsaw on a Monday morning, and that whole weekend I had been feeling sick.  It was starting again.  I could tell as I got on the bus for the 25-hour-ride to Paris.  The whole ride I was shutting down. . . .  When I got to the Paris bus station, I was so exhausted and dying that I just laid down on a bench, convinced it was going to be my final resting place."  People at the station noticed, called a physician, and paramedics brought her by ambulance to the hospital.  Krystin remembered nothing of this, but recalled that "again I was in the critical care unit, within less than an hour this time of losing my life, and my parents and brother were sitting at the Louvre wondering where I was."

Meantime, Pat, Elliott, and I did a little more sight-seeing and then returned to our flat—where we found a note, written in French, to the parents of Mlle. Engstrand.  We didn't know what it said, but we saw the ominous words "Hopital Tenon."  None of us spoke or read French, so Pat went in search of someone who could translate the note.  We learned that Krystin was in the hospital; we immediately took a cab, in the Paris rush hour, to far northeastern Paris, where we found Krystin in intensive care.  It was a repeat of the episode on Thanksgiving, 2004.  She remained in the hospital in Paris for a week.

It took some administrative legerdermain to get our health insurance to cover the cost of Krystin's hospital stay.  I finally received a check for a little over $7,000—the full cost of the bill from the hospital for a week in ICU/regular hospital care!  I wired them the money.  About a year later, I received a letter from the French Ambassador to the United States requesting that I pay the hospital bill.  I wrote back somewhat indignantly and told him I'd paid the bill promptly.  I never heard back from him.

[Overlooking Stirling, Scotland, at the Wallace Monument.]

"We came home [from Scotland] in mid-May, and that's when I found out that what I was doing (or not doing) with my insulin was considered an eating disorder.  This is also when I began the long journey of treatment, with 5 trips to an inpatient [eating disorder] program at a hospital in the Twin Cities, and a 1-month period at a residential program, which didn't really work out for my situation."  We and Krystin agreed she would not return to Morris to finish college and that we'd look at other residential treatment programs.  We finally chose Remuda Ranch, just outside Phoenix, Arizona, where Krystin stayed for nearly four months beginning in late 2006 (and for which HealthPartners, our medical insurer, paid well over $100,000).  It wasn't an exact fit for Krystin; the clients were anorexic or bulimic young women, not people who had diabetes and used insulin for weight management.  But it seemed to help.

Near the end of her stay at Remuda, she wrote:  "And here I am today, very committed and very motivated for treatment and recovery, and looking forward to a life of freedom and health."

The program at Remuda included a mandatory "family week."  So Pat, Elliott, and I went out, and in the middle of the week we knocked their plans out of whack when Pat and I determined we were getting divorced.  Krystin and Elliott were both upset; the staff at Remuda were at a complete loss for how to deal with the situation.  We finished the week peacefully, although the events set Krystin back considerably, and Pat moved out before Krystin came home in early April.

Family week at Remuda included truth-telling sessions:  the young women prepared for days in advance what they would say about the circumstances that led them to bulimia or anorexia.  All the families gathered in a big room and, one by one, the young women told their stories.  Often—mostly—they involved heart-breaking and astonishing family pressures; I remember being appalled at what some of them related.  There were many stinging criticisms of parents.  When it came time for Krystin to "truth tell," she said she had nothing to say.  She had no criticism of her parents or brother because they'd all been supportive.  The worst she could come up with is that I kept telling her she needed to do well academically.  I gently reminded her that I had repeatedly told her that it wasn't for *me* that she needed to do well in school, it was for her future.  She agreed. 

(I explored this "truth-telling" approach to therapy and family problems after we got back from Remuda.  There appeared to be no good research evidence whatever that these kinds of sessions have any beneficial effect.)

After Remuda, Krystin returned to the University, this time on the Twin Cities campus, and did extremely well as a student because she was healthy and managing her diabetes.  She lived with me, was a student, and worked at part-time jobs, ending at the University of Minnesota bookstore for a couple of years.  Those were happy times for her; she liked her studies, she felt pretty good, liked the people she worked with, and enjoyed the company of her friends.  She graduated in 2009 in history and wrote her senior paper on the Nazi extermination camp Sobibor, where the Jewish prisoners made a valiant escape attempt in 1943.  (To meet the second-language requirement for graduation, she took German.)  She received rave reviews from her professor for the paper.  I was incredibly proud of her for struggling through to graduation in spite of the tremendous obstacles she had to face.

After living at home for a year, looking for a regular job while holding part-time positions, in May 2010 Krystin decided to apply to teach English in South Korea.  A friend had gotten in a program to do so, and Krystin decided life was going nowhere, a year after graduation from college, so applied and was accepted, and by the end of July she was in South Korea.  She stayed through the end of August 2011.  She thoroughly loved being in South Korea (the teaching, not so much, although she found it tolerable and she dearly loved the students), and she traveled to Singapore and Thailand while there.  Krystin and I Skyped every week, so she kept me up to date on her experiences as a teacher and temporary resident in a very different culture.  By this time Kathy and I were in a solid relationship, so we brought our two boys (Elliott and her son Spencer, 4 months younger than Elliott) to South Korea and then brought them plus Krystin to Japan for a week.  Apart from the dreadful heat and humidity in August in the two countries, we had a fabulous time with the three kids.

Gyeongbok Palace, Seoul

[no indication where this was taken]

South Korea BBQ night (with Spencer, Kathy's son)

Upon returning home, Krystin got a job at the University of Minnesota in 2012, working in Sponsored Projects Administration (SPA).  (This is an office that few outside higher education would even imagine existed, but it's now more than just a cottage industry at major universities in the U.S.  It is exactly what the title says it is:  it administers sponsored projects, which are research and education grants from federal and state agencies, foundations, and the private sector.  The grants from federal agencies in particular come with many, many, many regulatory strings and rules, and are so complicated to manage that universities have tried to take some of the burden of grant administration off the shoulders of researchers so they can spend more time actually doing the research or education.  The last time I looked, the University had in excess of $850 million in sponsored projects.  It's a big deal to have them administered appropriately.)  Krystin loved working at SPA; as I wrote in her obituary, not only was she a proud graduate of the University, she was also proud and happy to be a staff member.  Even though her job, as entry-level, was at the low end of the hierarchy, she nonetheless enjoyed the work and the people she worked with.

In the fall of 2013, with a job and a regular income (and health insurance, which she of all people needed), she could move into an apartment of her own, and finally out of dad's house.  And she could buy a car, which she did.  She moved into an efficiency in Highland Park, a neighborhood in St. Paul just across the river from where I live—and an easy drive in to her job at the University.  Krystin was excited about the move and the car.  So were we.  It was fun to help her buy things for her kitchen and for the rest of her apartment.

I wish I could say that the venture living alone worked out well.  It didn't.  Krystin once again began to falter on her diabetes management, but she lived in her apartment for two and one-half years.  She was, I know, constantly fatigued, so living alone—grocery shopping, preparing meals, cleaning, taking care of her cats, doing laundry, all the humdrum tasks of daily existence—became a challenge for her. Over that period, she had a kidney transplant and a pancreas transplant and a gastric pacemaker installed and her gall bladder removed, along with having an esophageal stent implanted (because her esophagus kept closing up, which makes it difficult to swallow food).  She was in and out of the hospital repeatedly and sometimes for extended periods.  Fortunately, because I worked on campus, I could frequently walk over and have lunch with her.

I won't put in many of these pictures, but we often saw Krystin like this when visiting her in the hospital.  It is not fun to see your child this way.  Sometimes her sense of humor showed through.

After her many hospital stays, Krystin wrote this:

I decided I should skip nursing school and go right for med school. By now, I'm pretty much an expert at the skeletal, muscular, immune, urinary, endocrine, nervous, and digestive systems, specifically but not limited to, nephrology, endocrinology, psychiatry/psychology, gastroenterology, radiology, ophthalmology, thoracic, vascular, endoscopy, infectious disease, and rheumatology. I practically have a medical degree already anyway! Just not on paper.

          On her birthday in 2015, Krystin posted on Facebook from the hospital, one of her many visits:

This birthday has not started out well. I found out I'll be here through the weekend, and I still am not allowed to eat, so I don't even get the milkshake my mom was going to bring me tonight. But the nurses are trying to make this shifty day less so. They ALL came in together and sang happy birthday, and one of my fav nurses, who isn't even working today, called me on my room phone, from home, to wish me happy birthday. I'm still sad, frustrated, hungry, and crabby from being hungry, but I am truly thankful for how much they care around here. Now let me have a damn chicken sandwich.

Thanksgiving that year for her was no better.

Thanksgiving was really hard for me this year. Not only have I not been "allowed" (doc's orders) to eat for the past 3 weeks because of this never-ending intestinal inflammation and infection, but also because my esophagus has become so narrow I can't even swallow my own saliva. Sitting around watching your family enjoy the meal that you look forward to for 364 days a year is quite depressing. Nightly tube feedings just doesn't do it for me.

Her Facebook page and her blog about her journey as a transplant patient have dozens of such entries over the years.  I felt bad reading them at the time and I feel bad again reading them now.

To make a long story short, Krystin eventually moved back in with Kathy and me in February, 2016, to help better manage her medications.  That didn't work; Kathy and I both worked full time and were not trained to administer medications—and doing it with one's daughter wasn't optimal in any case.  (Her list of medications was two pages long.)  Krystin ended up in the hospital for nearly three months, and the medical staff said they would not release her except to a facility where appropriate care could be delivered.  (Kathy and I were relieved, and I lobbied with the psychiatrist *not* to release Krystin back to us—because we knew the same problems would recur.)  Before she got out of the hospital she wrote on the whiteboard in her room:

My latest attempt at a little hospital humor.

Top of Form

In May, 2016 she moved into a group home, where she essentially had her own apartment except for a kitchen.  She was glad to get out! 

Hallelujah, it's discharge day!!

FREEDOM!

I sure did accumulate a lot of stuff over 3 months.

          [In front of the University hospital]

She ended 2016 on a high note.

It's amazing what can happen in a year. I started 2016 as a walking corpse, almost dying; I will end it being healthier than I've been in probably 15 or so years. This year was shitty, and frequently both mentally and physically exhausted. I spent about as much time IN the hospital as I did out, if not more. But, here I am now, metaphorically standing on top of a mountain yelling "take that, life, I win! I did it!" It's true that where there's a will, there's a way. Over and over and over, I found a way, and it feels so good, because *I* feel so good!"

[She reported earlier in the year:]  I recently learned that when I was in the hospital for that 3 months, none of my (many) docs expected me to survive. Apparently my whole body was pretty much failing me when I was admitted. On my chart it said "failure to thrive," which is basically a nice way of saying "waiting for her to die."  Huh. Guess I showed them! It's amazing how resilient the body can be when it wants to live. Can't keep THIS girl down.

Top of Form

Bottom of Form

Because of the prolonged absence, she lost her job in January, 2016.  She thought she had been terminated, which caused deep depression.  ("I cried for almost 3 days when I thought I had lost my job. I love it there so much, my work performance and reputation have always been so important to me, as pretty much everyone knows, and I am so glad that all the higher-ups recognize my hard work, dedication, and ambition there, and are willing to wait for me and keep me around!) 

Fortunately, I learned very soon that she was not terminated, only suspended; a position was held for her, whenever she could return, at whatever percentage time would work for her.  That revived her spirits, because her job was her major connection with the "outside" world, with human contact, other than her interactions with her mother, her brother, Kathy, and me.  In February of this year (2017):  "Today marks 1 year since I've been at work. Time flies when you practically live in the hospital. At least my position is still going to be there for me when I'm ready to go back.  Love my job!"  Her office was just wonderful to her.

She was able to return to work on a part-time basis last March (2017).  She wrote on her Facebook page in early March:  "It's official, the date is set, and I'm doing a happy dance like there's no tomorrow:  I return to work on the 20th!!"  Unlike most group home residents, she was in full possession of her mental faculties and was legally her own guardian.  She was there because of the physical disease and its management.  She was doing well and her life seemed to be heading in a positive direction, both in terms of her health and her life in general.  Then it ended abruptly and unexpectedly.

* * *

What I am glad to be able to write is that Krystin, despite her health problems, clearly had a good time during much of her life.  The hundreds of photos I have from her show a happy, laughing, smiling Krystin as she traveled around the world and around the country and as she spent time with friends.  She suffered from depression from time to time, because of her health problems, but underneath it all I think she was an optimistic and vibrant human being who enjoyed life as much as possible.

I've learned, through Facebook posts from her many friends as well as email messages from them, that there were facets of Krystin of which I saw only glimpses, at best.  Even allowing for hyperbole that can accompany tributes to the recently deceased, many were heartwarming.  Here are a few excerpts (many from much longer messages).  I alternated using italics and plain font to differentiate between them.

"She was such a beautiful person inside and out who fought long and hard to overcome so many things life threw her way."

"Krystin was an amazing writer - she dreamed of publishing a book someday and told me that she hoped her story and her mistakes would be able to help others struggling with what she went through."

"Krystin always tried to have a bright attitude, and she will truly be missed."

"She was such a kind soul and beautiful person, and will be greatly missed!"

"She loved to write, loved her cats, loved crafting and her family and friends."

"I will miss her bubbly personality, sharp wit and huge heart."

"What a fighter. What a gal!"

"Krystin was deeply complex and to me she was a beautiful person and fierce friend. She loved her family and friends deeply and several times she told me of the joy and gratitude she felt to have such a supportive mother and father and brother. I will miss you lady, but I know you'll be with me every time we are lucky enough to have a spirit of adventure. . . . You raised a beautifully stubborn, intelligent, caring, empathetic and artistic human being who cared about the world. Everywhere I go for the rest of my life I know I am going to see her—every time I travel, see beautiful art, and all those things that we shared in Korea and delighted in."

"She touched so many lives. This hits home, too young, too sweet, too caring."

"Through the power of Facebook I was able to follow the amazing, strong and funny woman she continued to be through adulthood. After spending a couple of days in the hospital 2 years ago I felt compelled to send her a message.

"I wrote her, in part 'it was my first time being admitted and I thought of you a few times. Hospitals are not fun as you know. I remembered all of your posts and humor and thought "Krystin has had to do this so much, you can handle a couple of days." I know we're not close friends but I just wanted to write and say the way you take everything and package it in a humorous way is really inspiring and helped me a lot too.'

She wrote me back and I hope she wouldn’t mind me sharing part of her response now.  '"It touches my heart to know that my experiences, and the way I handle them, is an inspiration to others. And it's nice to know that I have so many people supporting me and helping me through all this stuff, even if only with kind words, like yourself.'  I'm actually going to be a guest speaker at the Native American Community Clinic at some point. They have a group once a month for diabetics, and I'm going to go and talk with the women and share my story. I'm really looking forward to it because I hope that my story will be inspiring for them, too, and they can know that I know exactly what they're going through with their diabetes, and have been there, done that. If I can touch the life of even one of them, then I've made a difference.”

"You’re amazing and your passion for bringing awareness to the struggles of diabetes will be carried on through those that knew you."

"Krystin was an animal lover, kind, smart, witty, empathetic. . . .  Could def[initely] be goofy.  But above all she was a fighter. She handled so many hurdles and setbacks with such dignity and strength. Thank you for being such a sweet soul, Krystin."

"Krystin was witty, insightful, smart and a great coworker. I am personally grateful for the help I received from her coping with t1d [type 1 diabetes] and will miss her big spirit and positive attitude."

"Our son was in school with Krystin at South and remembers her as such a loving and energetic and enthusiastic person. Such a shining light, and such a big loss."

"I know her health challenges were many and difficult, but from my encounters with her, I can say her smile and spirit will be much missed on this earth."

[to me]  "You need to understand and KNOW that for many of us Krystin has changed the way we think about things and people.  Watching her grow taught me many things and made me question lots of things.  For me, every one of her hospital stays was scary.  I knew that at some point that strong emotional will would be beaten down by a very fragile physical body."

"I loved that she was always someone I could count on - she was always there. Always. And even though we didn't play the same sports, or have the same classes in high school - she was always my friend. We would meet between classes, pass each other notes we would write to each other during the day. She always had the most colorful pens :).

"I always knew how she felt about me as her friend, as I saw it in her eyes towards her other friends. She adored her friends. Each and every single one of them was special to her and she had a way of making you feel like she was your best friend. She was so encouraging. She gave each of her friends the time and attention that made each feel special . . . at least for me that is what she made me feel, and I could see how she was the same with others. Her friends meant the world to her.

"She was an example for me . . . how she pushed herself in school to be better, going to college and aspiring to get her Master's degree and to become an author. I never doubted she would get there eventually. I know she faced so many challenges and struggles in her life but I could see she knew how to push through them and to not let them stop her or keep her down.

"When I look at her life, I see [she] was adventurous, wanting to experience whatever she could, without sometimes thinking of the consequences and while she had to learn hard lessons, I am happy to know she experienced a lot in life... she didn't let fear get in her way or keep her from trying new things. She was bold and she was willing to try anything. She really did just want to live.

"I have also learned my own lessons from her life. I learned how strong and how fragile our bodies can be. How there are consequences to every decision we make and eventually, as much as we think we can get away with things, they do catch up to us

"That is what Krystin was to and for me - a Real Friend. The kind that you go through the good and bad with, the fights, and the forgiveness, the ups and the downs and what remains is still a friendship. After all the years, and despite the time apart, what remains is a friendship.

"Krystin and I wrote one another rather regularly. In our modern world with such rapid technology, it was a reprieve to sit and put a pen to paper and talk to my friend. I will miss this terribly. We shared so much with one another and she was privy to my many misadventures in moving out to [  ]. Know that she was just a spark of joy to me in her own way. She was cherished and appreciated by so many."

"I will always remember Krystin for her amazing courage, her ability to touch people with her infectious love of life, and her joyful spirit."

"I remember her being so kind and pure of heart."

"I knew she struggled, but always believed she would prevail.  I, like so many, am devastated with the loss of her free spirit and beautiful mind."

[Someone with whom she worked]  "I will always think of her as a ray of sunshine."

"I knew Krystin & was friends with her for half of my life. . . .  I am sad as I think about the things we can no longer do together, but am so grateful for the things we *were* able to do together. . . .  Thank you for shaping her into the woman she was.  Thoughtful, giving, caring and considerate of others, especially her friends."

"Krystin and I met in German class at the U.  I'll confess we probably spent too much time giggling with each other and not enough time paying attention to the professor, but I was a brand new freshman from a small town and Krystin made me feel welcome.  She was my friend.  She will be terribly missed but *always* in our hearts."

"In 'Tuesdays with Morrie,' Morrie said 'death ends a life but not a relationship.'  May your memories of her always help to keep that relationship alive and special."

Christine Hinz Lenzen thank you for bringing Krystin into my life almost 25 years ago.  I can recall every sport, every sleepover (keeping Peggy Hinz awake while we giggled in the living room and stayed awake until the morning hours) and running amuck around the neighborhood like it was yesterday. . . .  [to Krystin] you’re amazing and your passion for bringing awareness to the struggles of diabetes will be carried on through those that knew you. . . .  I look forward to coming together to celebrate the amazing woman Krystin was.

Who would have thought this would be our last chat. Kristin, you were were a good friend and co-worker. You’ve given me knowledge of when things are not going my way, to take it in stride and make the best of it. I will miss your grammar policing, and throwing shots at one another. Your parents did a great job in raising you and you will be sorely missed by many people.

          I have read over the years—I don't know where—that one of the truest measures of your attachment to someone is your reaction when they die.  I think there is truth in the observation.  I have known people to whom I thought I was close, but to whose death I had a peculiarly unemotional reaction.  In other cases, the death of people I've known a long time but about my relationship with whom I hadn't given much thought caused me to break into tears.  Based on the messages and conversations I've had, I wonder if some of the people who knew Krystin in some fashion were surprised at the depth of their reaction when she died.

* * *

          Many of her friends remember Krystin's sense of humor.  So did Kathy, who suggested the line in her obituary about her quirky sense of humor.  It is thus appropriate that I pull a few bits of her humor from her Facebook page.

Many, many birthday wishes to my wonderful, loving father, who is no longer just over the hill, but over the hill and halfway up the next one.   (Seriously, sometimes I crack myself up with how clever and funny I am.)   Love you lots, dad!!

A dude from one of my docs' clinic called me. He asked me if I had a couple secs to talk about an upcoming appointment. I told him I have lots of secs. . . .  He set me up for it perfectly. I wasn't even trying to be witty, it just comes naturally!

Splatter painting on canvas! Take that, Jackson Pollock.

Had a doc appointment the other day with a new doc, who said to me (and I love when this happens), "I was looking through your chart, and I see you have some type 1 diabetes." Me, being a smartass, said "Still? I was hoping that this time I'd have less diabetes than I had before."  I should've said something like "And you have a stain on your shirt, but let's not sit here and point out each other's faults."

I'm that jerk in the elevator who jabs at the 'close door' button so I don't have to spend any more time than necessary staring at my feet. I mean, it's common knowledge that all the best thinking in the world is done riding solo in elevators!

There's a commercial for Liberty Mutual car insurance where this chick is saying how she did all this research before buying a new car, then crashes said new car into a tree. Her current insurance only pays for half of the damages, and maybe she "should've done more research on them." No, dummy, maybe you shouldn't have crashed your new car into a tree.

Much research was done, and many test subjects were studied, to give you the most accurate findings on this topic.

         

The damn creaky doors in this house make it real hard to be a successful ninja-by-night. Not saying I am one. Not saying I'm

not. . . .

Let me give you all a little piece of advice on life. If you work in a university department that deals with millions of research dollars every year, never say "oh shit" too loudly. A bunch of people will freak out, because they don't know that the only reason you said it is because your pickle spear fell on the floor.

Either it's senior prank week, or that kid who just ran, butt-naked in front of my car, gets really hot when he runs. I don't judge.

I would like it to go on record that if I were to ever become a vampire, I want a Select Comfort mattress and a MyPillow in my coffin. After all, comfort is key to getting a good night's sleep!

[A friend responded:  Vampires don't sleep.....] During the day, when they're in their coffins! Twilight portrayed them wrong. If no sleep, then I'll go with daydreaming.

Made this this morning. Somewhere there's a tiny Santa running around naked!

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I have this habit of getting tired of my hair color fast. I changed it up, but I still seem to be in a purple kind of mood. ^_^ <3

Top of Form          

The train system in San Francisco is called BART (Bay Area Rapid Transit) because, when it was first built, they decided not to name it after the area of San Francisco because they figured people wouldn't want to ride the SFART. Haha! True story. That I just made up.

Sometimes you're hanging out in your hospital room, just chillin', and an unattended bladder scan machine goes rolling past your doorway. . .

Today marks week 5 of my captivity. Most exciting thing that has happened today is hearing a nurse, upon exiting the room of one of my neighbors, mumble "asshole" under her breath, just as she was walking by my room. Good times.

Did I miss the section of the newspaper with the turkey coloring contest? I was gonna rock the 5-7 age group this year.

--"Oh my goodness Krystin, what happened to your eye??"

--"Oh, well, sometimes I volunteer with an animal rescue group. This past weekend we joined some local police to break up an illegal loon-fighting ring, which is actually a big problem here in Minnesota. A nasty brawl broke out, and this is my souvenir. But this is nothing; you should see the other guy!"

--That's my story and I'm sticking with it.

Actual warning on hair dryer packaging: 'Do not use in the shower.' Well there go my weekend plans. Party poopers.

Hahahahaha, my physical therapist is so funny. He had me walk across the room a couple times, then told me I walk very stiff. I told him, "hey, buddy, when you have 5 major surgeries in YOUR abdomen over a 15 month period, and do everything you can to avoid any movement in that area, then come talk to me about walking like a penguin." OK, I didn't actually say that. But I wanted to.

I wish Raj's character from The Big Bang Theory were a real person. We'd go together like kitty litter and pooper scoopers.

So, we all know that Oscar the Grouch is a weed nugget living in a garbage can, and who knows what the hell Snuffleupagus is, but what kind of bird, exactly, is Big Bird supposed to be?

Looks like it's back to the drawing board with the GI docs. My esophagus isn't happy with the stent in, but can't stay open without it. Hmmmm. Maybe they'll invent a new procedure or treatment and name it after me. That'll be my claim to fame, I'm sure of it. I knew I was here for a reason. ;)

I am very impressed with how well everyone keeps their cool in Lord of the Rings. Through all 3 books/movies, I just keep waiting for someone to say "Well, shit. We're all f**ked, guys."

It's a good thing I don't write fantasy, because if I did, this is how LoTR would go:

Bilbo Baggins leaves a special ring with Frodo Baggins. Years later, with the help of Gandalf, Frodo and Gandalf realize the ring is one of evil power and needs to be destroyed. Gandalf hops on one of his birds and flies to the summit of Mount Doom, tossing the ring into the lava and thus ending the potential and attempted rise of Sauron. Easy peasy. The End.

Flies have got to be THE dumbest insects on the planet. They have the entire open sky to fly around, yet they somehow manage to find their way into your car through the tiny opening in the window, and then can't find their way back out. DUMB.

OK, so Hello Kitty isn't a cat. Next we're going to be told that Tinkerbell is really a mosquito, and that sponges don't actually wear pants and live in pineapples under the sea.

Well gosh darn, that high school math finally paid off. I had to use the Pythagorean theorem yesterday to solve a work prob--oh wait, what am I saying? No, no I didn't.  [In response to a comment:]  Yeah! I've never used either of them since 10th grade math. Ever. Sometimes I sing the quadratic equation song to my cats, though. . .

I've been trying to find a good way to say how happy I am that I can finally swallow normally now, but I can't seem to find good wording without making it sound dirty. So we'll just leave it at that.

What is a 4" carrot doing in my bag of baby carrots?? That's not a baby carrot, that's a pubescent carrot.

I like to leave the TV on for my girls during the day. This morning one of the Indiana Jones movies was playing on usa channel. If I get home and they're wearing mini fedoras, swinging from the window blinds, and dodging household items, we're switching to Disney Channel.

And so on. . . .

* * *

          I don't know what percentage of the American public, or of Krystin's age cohort, has traveled abroad, but I would wager that Krystin managed to get in more travels than the vast majority.  Pat and I took her and her best buddy Christine Lenzen to London for ten days in 2001, when they were 16 years old.  (During which trip Krystin was an absolute pill.  She and Christine and I have laughed about it later, and the two girls did have some good times together while in London, but much of the time she was a surly pain in the ass.)  While I was on leave at the University of Edinburgh she made it around much of Europe, traveling with a friend to France, Spain, Austria, Poland, Switzerland, the Netherlands, Belgium, and Germany, and with us she went to Denmark and Sweden—and of course lived and traveled around in Scotland for part of the time.  She taught English for a year in South Korea and during that time also traveled to Japan (with Kathy, Elliott, me, and Kathy's son Spencer), to Singapore, and Thailand.  We also took her, as part of family travel, to Italy, Mexico, and Canada.  In addition, we traveled some around the United States, so she visited California several times, Virginia, North Carolina, Washington, D.C., Indiana, Iowa, and Texas.  She visited a friend in Oregon and Arizona.  Inasmuch as I didn't get out of the country until I was 49 years old (except for a week in Mexico in the early 1980s, in my early 30s), her travel record by age 30 put me to shame.

5 years ago was Cheusok vacation in Koh Samui, Thailand. What a HOT but amazing trip!! I would absolutely love to go back to Thailand some day!

 At the Ponte Vecchio

          In 1996 I took Krystin on a long driving trip prior to one of the family reunions.  The first day we drove (*I* drove, of course) from Minneapolis to Lexington, Kentucky, nearly 800 miles.  Uff da.  We listened to several books on tape, including one that Krystin forever after liked, Agatha Christie's And Then There Were None (a.k.a. Ten Little Indians), which made the drive go by quickly.  I wonder if that experience is what led Krystin to love to read murder mysteries later in life.  We also listened to Little Women, or at least part of it; we both thought it was a snoozer and we arrived at the hotel before we were very far into it—and we didn't finish it.  Along the way we stopped at another faculty friend's place in Blacksburg, Virginia (and watched a movie of the Christie book), and another friend's place in North Carolina.  We toured the Duke campus and Krystin decided she'd like to go there.

I took Krystin and Christine on a trip in 1999.  Two weeks before the annual gathering of Pat's family on the east coast, I flew with the two girls to Boston.  I rented a car and drove to Woods Hole, from which we took a ferry to Martha's Vineyard, where one of my best friends on the faculty had a summer place.  We stayed several days, and the two girls got to have fresh lobster.  We picked up the car in Woods Hole and drove to Philadelphia, where we stayed with my friends Bob and Denise.  The girls got to see the Liberty Bell and Independence Hall and Krystin got to see the gravestone of her first cousin about 20 times removed, Ben Franklin (Pat is descended from Franklin's sister).  Denise worked in New York City, so we took the train in with her one morning and the two girls got a day on Manhattan.  (They were indignant when I was trying to hail a cab and some New Yorker stepped in front of me to take one I had flagged down.  They got to see Ellis Island and the Statue of Liberty.)  From there we drove to Washington, D.C., and they got to see some of the sights there.  Finally, we drove to Myrtle Beach, S.C., and joined Pat's family for a week.  (Pat didn't accompany us on the earlier travels because she didn't have enough vacation time to be gone that long.)  Krystin was *not* a pill on this trip and the two girls had a marvelous time.

          She loved every minute of her travels.  And took about a gazillion photos while she was doing it.  Here's another one, from a trip that she and Elliott took (by themselves!) in 2009 to San Francisco following their graduations (Krystin from the University of Minnesota, Elliott from South High School).  Elliott's his usual smiley persona for photos.

* * *

          Many years ago, when Krystin was in elementary school—it may have been kindergarten—she brought home a tiny maple tree in a Styrofoam cup.  We dutifully planted it next to the house, where it survived and began to grow.  When it began to get bigger, I moved it to the back yard, but it had to be under the shade of two enormous maple trees already there.  So it grew, but very little, and it tilted to the west, the direction from which it received the most sunlight.  In 2012 we had to take the two big maples down.  Within 3-4 years, Krystin's maple must have increased its size by a factor of 3 or 4—it grew fast.  An arborist we had out to trim it (try to shape it so it wasn't all leaning west any more) told us that the big, old maples basically sucked all the water out of the ground, and once they were gone, the young tree could finally absorb enough water to take off.  So Krystin's maple tree is now the largest tree in the yard, a quarter of a century after she first planted the seed in the cup.

* * *

          Thinking about Krystin and her brother Elliott has often raised in my mind the long-standing question about nature versus nurture.  I tend to think nature (genetics) plays a larger role than most people do—not dispositive, but significant.  In some ways Krystin and Elliott were alike but in other ways they were very different.  From the very beginning, as I mentioned earlier, they were totally different infants and toddlers.  Krystin was aloof and distant while Elliott was warm and affectionate and always wanted to be carried around.  In my opinion, there's no way that difference could be anything other than genetics (or perhaps epigenetics, "the study of the way in which the expression of heritable traits is modified by environmental influences or other mechanisms") because there was no time for environmental impact. 

Krystin was a spendthrift—she couldn't hold a dollar in her pocket more than 10 minutes and she hated having to deal with money problems.  Elliott is almost miserly; he guards and spends his money carefully.  It may be that Elliott reacted to his sister's habits.  Krystin was (in the main) outgoing and gregarious.  Elliott is reserved and has a much smaller group of friends.  Krystin loved to write. Elliott rarely writes but loves to draw and paint, and has been drawing since he was old enough to hold a crayon or colored pencil or marker—but Krystin loved making things with her hands and had enough craft materials in her apartment to keep herself busy for a decade.  Krystin had a difficult time thinking for the long term; Elliott does so consistently.  Krystin loved to read books; Elliott reads books only sparingly (but reads an enormous amount on the web).  Krystin accumulated stuff; Elliott has worked not to do so.  (When he realized how much "stuff" there was in Krystin's apartment at the group home, he tried to take as little as possible when he moved out of our house because he didn't want to get on the road to being a hoarder.  Kathy and I didn't allow that plan; we made him take just about everything.  He had more "stuff" than he realized, to his alarm, and at his request I donated quite a bit.  I made one exception for his dozen Xerox boxes full of Legos.  I told him he has to take those when he moves into a house.) 

          Did Krystin love to write because she saw me writing?  That seems doubtful; she didn't see me writing when I was young (which I did a lot) nor did she see my professional writing (which I did a lot).  There's some generic trait hidden in there that Krystin and I both inherited.  Both of the kids saw their parents read a lot, and they had books read to them when little, so that they both read a great deal, albeit in different places, is probably no great surprise nor genetic.  I don't understand why Krystin was attracted to murder mysteries (maybe the book on tape), like her father, but completely unlike her brother.  Or why Krystin was fascinated by Tudor history, like her father, when Elliott could not care less about it.  (Because we took her to London?)  Krystin got sports from her mother and her reading interests from her father.  Go figure that out.  But a reader of books she was:

I had a Kindle once, but never used it. Call me old fashioned, but I am, and always will be, a lover, reader, and collector of physical books. There's nothing like holding, smelling, and turning the paper pages of an old book!

          One activity in life that Krystin and Elliott had in common was travel.  Once they had the experience, they were ready and willing to go almost anywhere any time.  That is probably not uncommon.

* * *

          I would omit a significant part of Krystin's life and psyche if I did not recall her love for animals.  In early 2004 we acquired a kitten, one we inherited when it was abandoned in the women's bathroom where Pat worked.  Later that summer, I came home to find another kitten in the house.  Krystin and Pat had gone to the local Petco on adoption day and, can you believe it, came home with another kitten.  Krystin begged me to let us keep it; I didn't put up any resistance.

          Over the course of her life at home we had cats, dogs, and rats.  (Elliott had geckos, too, but those are not "pets"!)  Our rat Alice was one of Krystin's favorites, too.  Alice was affectionate and loved to play.

          Krystin adopted two cats when she moved into her apartment.  She loved them as much as she loved anyone or anything on earth.  When she went into the hospital, and then to the group home, the cats went to live temporarily with Peggy (and Dan), the mother of Krystin's life-long friend Christine, the one she met at daycare when she was 2 years old.  Krystin visited her cats regularly at Peggy and Dan's and almost always took pictures that she'd post on Facebook or send to us.  Peggy and Dan are now the permanent parents to Krystin's cats, an arrangement Krystin would endorse enthusiastically.

          Beyond the pets of her life, Krystin "adopted" a penguin through some international program and was also a member of the World Wildlife Federation.  One of the members of our extended family made a donation to "The Cat Café" in Denver in Krystin's memory.  "It is a wonderful place that finds homes for cats and provides a loving refuge for them as well.  Now a little bit of Krystin will be there, loving & petting the kitties who need to be loved."  Krystin would be pleased.

From her Facebook page:  Krystin Engstrand checked in to Animal Humane Society.

So yeah, I pretty much live here now. It makes me so happy when the cat/s that I fell in love with last time I was here, aren't here the next time, because they found their forever home!

In another universe, Krystin is a veterinarian.

* * *

The final trip to the hospital and the aftermath

          Krystin sent Kathy, Pat, and me an email Monday morning, October 16, with the subject field entry "Damn."

Damn

Krystin                Mon, Oct 16, 2017 at 9:41 AM

To: Gary Engstrand, Pat Engstrand, Kathy Jensen

Woke up around 5am this morning feeling super nauseous. Even had to pull my garbage can over next to the bed. I especially feel nauseous after eating. Try as I might, I haven't been able to gain weight for the life of me. In fact, I've been losing weight, and my appetite has greatly decreased. I've had little energy, am tired most of the time, and frequently feel bloated.

Last time I had all these symptoms simultaneously was back in January, and required bowel reconstructive surgery.

So you can probably imagine why this is a little disconcerting for me. I do NOT want to spend another bday in the hospital. ☹

Gary Engstrand   Mon, Oct 16, 2017 at 12:59 PM

To: Krystin

Ugh.  I'm sorry.  I trust you're in touch with the docs.

LY

Krystin                 Mon, Oct 16, 2017 at 2:04 PM

To: Gary Engstrand

Not yet. I haven't even told Carly. I'm scared I might get admitted. It's too close to my bday for that...

Gary Engstrand             Mon, Oct 16, 2017 at 2:05 PM

To: Krystin

But you can't go on like this for days. Besides, you shouldn't ignore a medical problem that might get worse.

Krystin went to the hospital later that day.  The following may be more than you want to know, but here it is.

          During a lunch on campus the next day (Tuesday), I received a voice mail telling me I needed to get to the hospital as quickly as possible.  Fortunately, I was already on campus, so I walked over fast.  As I passed the room in ICU that she was in, I saw 8-9 people around her bed.  I was ushered (along with Carly, her care-giver from the group home) to a lounge, where one of the doctors explained what had happened.  Pat, Kathy, and Elliott all arrived very shortly after I did.  We were convened in a conference room and told that Krystin's situation "was not survivable," that she was unconscious, that she would not be revived, and that she had had no fear going into the operating room (for what seemed like just another routine procedure).  She said something like "let's get this procedure over with" before being given anesthesia.  We were told we could come into her room to say goodbye, but she would not be conscious.

          I didn't fully understand what had happened, when the doctor explained what was going on, so I spoke with him at length a few days later.  He is a caring, sympathetic physician who also explained with great clarity what had happened.  I won't go into details, but what happened is that a link (fistula) developed between her aorta and her esophagus and the aorta, which has blood under high pressure, began shooting blood into her esophagus.  That bleeding could not be stopped, so ultimately Krystin died from massive internal bleeding.  That it happened, however, was the result of the impact of diabetes on her esophagus and stomach (and perhaps the heart as well, although we don't know that).  Once that connection—fistula—developed, the die was cast:  nothing could have been done to save her (although they didn't know that until they had her on the operating table).  I know they made heroic efforts to save her before giving up:  they gave her 52 units of blood (routine surgery requires 1-2 units).   So the one-day delay, from Sunday to Monday, made no difference in the end, the physician told me. 

          As a measure of his humanity, the physician told me he has a 27-year-old daughter and he could not imagine how we felt.  He said he couldn't even be empathetic—because empathy requires putting yourself in some else's shoes—and he could not fathom being in our shoes.  He knew, however, that the event was incredibly painful for us.

          I am ambivalent in a small way about not going to the hospital to see her when she went in late Monday, October 16.  I had not seen her for over a month (because Kathy and I were in Europe September 27 – October 14), although I had, as usual, exchanged messages with her off and on throughout that period.  Had I known the situation was terminal, I would have rushed to see her.  On the other hand, it would have been out of the ordinary for me to have done so, because none of us visited her in the hospital during what were typically in-one-day-and-out-the-next events.  A visit could have set off alarm bells.  Moreover, had I or we known that it was terminal, then so likely would Krystin, and I can imagine that Krystin would then have been terrified.  As far as I'm concerned, the most important thing the surgeon told me was that Krystin felt no pain during the events and that she went into the procedure with no foreknowledge of death, so no terror.  I cannot have wanted her to face that, so—I tell myself—my absence when she went in avoided any extraordinary concern on her part.

* * *

          Two of Krystin's friends (who do not know each other) got into a disagreement on Facebook.  One friend wrote, in a fund-raising appeal for We Are Diabetes, that "Krystin Engstrand passed away on October 17 due to complications from years of mismanaged diabetes."  A second Facebook friend took rather sharp issue with that phrasing. 

I feel a little angry and frustrated that people are labeling her death as "mismanagement of diabetes". Krystin would be the first to admit that she struggled being a "good" diabetic, and we spoke many times on the struggles and guilt she felt at not being able to be consistent with the constant demands of the chronic illness that she never signed up for. It wasn't stubborness or lack of trying--it was a constant battle to overcome such a rough hand of cards. . . . 

[The first friend responded.]  Krystin would have been the first to admit (and often did) that all of her health complications were due to the way that she dealt with (or rather didn't deal with) her diabetes.

[The second friend wrote again.]  You never had to walk in her shoes yet it is easy to say that all her health problems were her own fault, and that is simply unfair. Growing up as a child and then a young woman with such a burden as diabetes and struggling with constant monitoring and physically painful injections and depression from never feeling fully adequate or "normal" is easy to marginalize when you're not the one in her shoes. Krystin was a strong and fiercely loyal friend and I would not be a friend to her if I didn't share or point out how much she expressed to me the burden she felt regarding her inability to achieve a "normal" life. Her physical pain was something the doctors never took seriously, and her mental pain was real. Saying that it was all her fault is not fair to Krystin at all.

          The first friend is correct in saying that Krystin was, in recent years, forthright about the plight she was in, acknowledging that it was due to her years of ignoring her disease.  If she could speak now, I'm certain she'd say that where she is is the result of her own actions.  In March 2012 Krystin wrote an article for We Are Diabetes titled "We Are Survivors - Krystin: It's never too late" to serve as a lesson to others, a piece that makes the first friend's point.  Here's an excerpt.

If there were a Diabetics Anonymous group for people with diabetes who fail to make peace with and acknowledge their illness, I would be the head honcho; a fact that I am not proud of. . . .

[When she went to high school] My parents were told by my doctors that it was time they let go of the leash and let me do it; “it” being managing my diabetes on my own, since they would not be able to take care of me forever. I suddenly had this newfound freedom and control over my diabetes. No one to prep everything for me, no one to confirm that I had actually done my blood test and injection, no one to hold me accountable anymore. This does not mean that my parents didn’t check in frequently to ask how my blood sugars were. It means that I began lying about it, and somehow I didn’t even feel guilty about lying. I guess I never quite grasped the whole responsibility aspect of it. Instead, I began to neglect the illness, treated it as if it weren’t there. Diabetes was an inconvenience, a hassle, a burden; a “problem” with me that I came to loathe.

In high school, a time when peer critique was cruel, and self-critique was even crueler, all I wanted was to fit in. I pretended that I was “normal,” that there was nothing different about me. I didn’t want to leave class ten minutes early anymore to go to the nurse’s office. I didn’t want to do anything that I thought would draw negative attention to me, and that’s just how I saw it: Diabetes would make me an outcast, and at a time in life where fitting in was all that mattered, I would do anything to make sure that happened, even if it meant putting my health on the line. I stopped going to the nurse before lunch, and like everyone else, ate whatever I wanted from the lunch line, but without covering it with an insulin injection. I lived by the theory that I was still young, it would be years before any complications started, or if anything else went seriously wrong, the medics can save me. I had time. Not the best motto to live by, but in my rebellious teenage years, I used it to get by.  [Krystin changed the narrative slightly here, with high school as the period of trouble, not middle school.  I suspect she took authorial liberties with the history to make a point; her earlier recollection about middle school as the vexing time, written closer to the events, is probably more accurate—and it also accords better with my memory of the changes in Krystin's social relationships and outlook.]

Eventually these theories became not just an idea in my head, but a lifestyle. Everyone around me saw my health declining. I let the illness begin to define me: I was no longer Krystin, but Krystin the Bad Diabetic. Even if no one said it out loud, I assumed they were all thinking it. Over the years, after high school and into college, even with all the emotional pain it caused my family and friends to watch me struggle to be healthy, I let diabetes win. It had me not caring, about both the illness and about myself. . . .  I had no idea the damage I was doing to my body by not taking my insulin, and how within a couple years, I would find out the consequences.

Krystin also posted on Facebook in 2015:

I am very excited that next week I will be giving my first presentation as a National Kidney Foundation advocate, at a diabetes support group at the Native American Community Clinic in Minneapolis! I finally get to start sharing my story, and the fact that my first presentation will be at a diabetes support group is pretty much perfect.

          The second friend is right to say that none of us can know in any real sense the nearly constant pain that Krystin felt, both physical and psychological.  To read her blog about being a transplant patient, written over five years from 2012 to 2017, reveals her ups and downs.  I said to Kathy on more than one occasion that I was amazed by Krystin's stamina and determination; had I been in her shoes, I would have thought seriously about throwing in the towel.  I stood in awe of her grit and perseverance.  She was stronger than I would have been.

          Some were critical of Krystin for not following the medical regimen necessary to maintain good health—including Krystin herself.  I have a different and gentler view, and it goes back to "defiant."  I'm persuaded that many broad character traits are genetic (not whether you like broccoli or don't like mussels, but—to pick random examples—cautious versus bold or far-sighted versus short-sighted or caring versus cold).  One of the "traits" that Krystin had, especially until later in her life, was an inability to see or think beyond the next day or week.  She kept on believing that because she was young—she wrote this herself—she could ignore her diabetes for a time and then give it serious attention later.  She knew in recent years that that had been a huge mistake, one that eventually became a fatal mistake. 

My perspective is that Krystin had a psychological issue, a wiring-of-neurons issue, a personality trait that caused a disconnect between (1) her understanding of diabetes and the treatment it required (which she knew upside down and backward), and (2) her ability to follow through on her understanding.  That disconnect plagued her all her life.  In many ways, she had the worst possible combination of personality traits for someone with diabetes.  What saddens me is that I know people who have diabetes who are my age or older and who are in good health—because they've managed the disease well over the decades.  Had Krystin done that, too, she'd still be with us.  But there was a part of her that just could not connect her knowledge and her action.  I am sure her behavior was not malicious and I don't believe it was intentional; I think her underlying personality, her genetic makeup, created a mental state that led to the behavior Krystin engaged in.  I don't find blameworthiness.

* * *

No one, parent or not, can fully understand the grief and sorrow that comes with the loss of a child.  Many of my friends who are parents have told me that they can't grasp the emotions.  The one phrase I heard over and over again, both written and spoken, was, "I can't imagine . . . "  The physician said it.  They are all correct:  they can't imagine.  I'm sure that *I* could not have imagined the overwhelming sense of loss.  I don't know if it's the worst one—what little research I've seen suggests that it is—but the death of one's child is certainly one of the worst experiences any adult human being can face.

(As I thought about it, the question of whether the death of a child is the worst experience a human being can have is both stupid and unknowable.  Stupid because it doesn't matter:  profound grief, whether because of the death of a parent, sibling, child, or friend, is profound grief.  Unknowable because grief is subjective—my grief for Krystin may be deeper, or not, or different, from someone else's grief for a spouse or friend or whomever.  Unknowable also because it's not measurable.  What are you going to do?  Find a large group of individuals who lost both a child and a spouse/friend/parent and ask them to fill out a 0-10 scale on how bad their grief was about the two deaths in order to compare their level of grief?  Good luck conducting that research and getting anyone to believe it's valid.  I'll leave it at what I wrote above:  the death of one's child is certainly one of the worst experiences any adult human being can face.)

Krystin's death isn't the first time in our family that a parent saw her child die.  As I noted earlier, my mother, an only child and raised by a single mother from the time my mother was 5 years old, died at age 62.  Her mother—my grandmother, of course—was alive and healthy, 87 years old.  In that case, we all knew my mother was dying, but once again, foreknowledge didn't soften the blow.  My grandmother was devastated, as you would expect.  (I can still vividly remember when my dad and I had to go to my grandmother's house to break the news.  *Now* I can much better understand how she felt.  But in my dad's admiring words, she was "a tough old broad" and lived another 10 years.)

One of Krystin's friends wrote that Krystin told her that she (Krystin) wasn't afraid of death, but she was afraid of the effect it would have on her parents.  Krystin was right to worry.  I didn't need her death to know the depth of the relationship.  Neither did Pat.  (I want to note explicitly that Kathy was/is almost as devastated as Pat and me; Krystin was a part of Kathy's life, including living with us for a period, for eight years, and Kathy cared deeply for Krystin.)

I have not done a lot of reading about grieving the death of one's child, but I have read briefly.  One website offered these comments that struck home for me.

Bereaved parents can mourn the death and loss of a child of any age, and that it feels unnatural to outlive a child. . . .  All bereaved parents lose a part of themselves.

After the death and loss of a child you are grieving not only for your child, but also for the loss of your hopes, dreams and expectations for that child. Time will not necessarily provide relief from this aspect of grief.

A long piece Krystin wrote about her experience in Paris confirms the friend's assertion that Krystin wasn't afraid, but in this instance she had another reason.  "I don’t fear death; I fear the things that I’m going to miss if I die too young.  I still have many aspirations and dreams.  I can’t achieve anything from the grave. I will not let the thought 'I can’t do the right thing for the rest of my life, the hill is too steep' keep me from living my life [Krystin's italics]."  It is true that we grieve "the loss of your hopes, dreams and expectations for that child."  Krystin shared the concern.

          I am not pleased to read that "time will not necessarily provide relief from this aspect of grief."  But I am afraid it may be true.  We must, however, focus on the memories of the good times.  That I shall do.  Like this one, when she was at the State Fair this fall.

* * *

It should have been a distraction:  In a case of exquisitely inconvenient timing, I helped Elliott move out of the house (for the first time, except for living in college residence halls) into an apartment on October 21, four days after Krystin died.  The move had been planned a couple of months earlier, of course.  We had, long ago, talked with Krystin about letting Elliott use the tableware and kitchenware from her apartment; it was understood to be a loan from her.  (Pat and I knew that if she ever did get back into an apartment setting, we'd just buy her new stuff, but that was beside the point.)  Krystin endorsed Elliott using her stuff; she thought it was a great idea.  But as we were unpacking it in Elliott's new apartment, I was saddened that it wasn't a "loan" any more.  The stuff was all his now.

* * *

          Krystin loved Christmas.  On her Facebook page, October 2 of this year:  "It's reeeeeeeeally hard for me to not get out my Christmas decorations yet. I'm already Miss Antsy-Pants over here!"

And she had plenty to get out.  When we were sorting through her belongings, we discovered two large plastic tubs full of Christmas decorations, some purchased and many that Krystin had made herself.  What she liked most of all, I think, was giving presents.  She always spent more money than she had on Christmas presents and her eyes would sparkle as she watched others open the gifts she'd purchased for them.  I have to say, too, that she usually had good taste in gifts once she was old enough to perceive what "good taste" meant.

          The holidays are painful after a loved family member dies.  We have had hanging in one corner of our living room almost since we moved in in 1989 a Flensted mobile of six penguins, black and white hard plastic.  Every year when we do the Christmas decorations, Krystin put red ribbons on the black and white penguins.  Either I will do so this year or Elliott will.

          Another Christmas tradition, all the time the two kids were growing up, has been that the Friday after Thanksgiving we drive to a far outer-ring suburb, to a Christmas tree farm, and cut down our tree.  On the way to the farm we play the sound track from My Fair Lady; on the way back we play the sound track from Fiddler on the Roof.  When we get the tree in the house, I then spend about 2 hours putting on all the lights (~125) and getting them attached to the branches.  Then Kathy, Krystin, and I put on the ornaments.  A couple of years ago Kathy counted to 400 as we removed the ornaments.  This entire process takes from about 9:00 in the morning to about 5:00 in the afternoon. 

Krystin was the one who always wanted to continue the tradition—even after she moved out, she would stay at the house for Thanksgiving so she was here Friday morning to participate in the tree ritual.  But actually she's the one who did the least, the little stinker.  She'd help pick out the tree, tromping through the fields, but Elliott and I always cut it and got it on the car, I spent all the time getting the damn lights on it, and Krystin then rejoined the process at the end, for the easy and fun part, hanging the ornaments.

"The boys cut down the tree while I build a snowman and make friends with an alpaca named Joe."

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          Elliott has always been ready to make the trip to get the tree, and help me get it in the stand and vertical, but after that he bails out, being sort of a grinch about Christmas.  After Krystin died I sent Elliott an email.

Elliott, I'm debating what to do about the Christmas tree.  The biggest proponent of cutting the tree and decorating it, of course, was Krystin.  I know you've never been all that excited about it.  Do we—you and I, maybe Kathy—go up and cut one this year, maybe think of it as the Krystin Memorial Christmas Tree, and then abandon the ritual?  And then reconsider it next year?  Or not do it at all, including this year?  Or would you like to continue it?  I'm fine with a decision either way—that I will have to make—but I'd like your opinion.

          To my astonishment, Elliott wasn't willing to abandon the tradition.

I don't think we need to dispense with the tradition necessarily.  It's still a thing we do and it does make the living room a much different place for a month or so.  But if it were up to me I'd say maybe just rein in the decorating?  Fewer ornaments on the tree. Or dare I say even prune the whole collection so someone else doesn't have to do so later?  Just so the process doesn't take an entire day.

I told him we'd continue our tradition.  I pointed out to him that his suggestion for reining in the decorating was the least of the time sink.  It's 9:00 – 3:00 to get the tree and put the lights on it.  (He was overtly trying to avoid inheriting our ornament collection; he knows that that "someone else" is him.  He won't be able to do so.)  The tree this year will be in Krystin's memory.

* * *

Krystin's mother Pat commented to someone that we—that is, Pat and I—had become so used to seeing Krystin as a bundle of medical problems that we neglected seeing her as a full human being—and realizing that makes us both cry all over again.

          Krystin was clearly a gregarious, outgoing young woman.  She was that way when she was very young, the life of the party, and then for a period she withdrew, for reasons she explained and I quoted earlier.  It seems to me, from the Facebook posts and emails I've received, that she remained (or recovered to become again) the extravert, having a wonderful time with her friends, keeping up communication with many in a lively fashion.  We didn't see that so much; as I wrote at the beginning, the family saw the medical issues, how lousy she felt, the problems she was having—that, as I wrote, is what family is for.  As a result, however, we didn't see the other side of her as much as the rest of the world did.  To her friends she showed her ebullient, optimistic, happy self.  I am glad she did so; I just wish we could have seen more of that side of her ourselves.

          After I composed the preceding two paragraphs, I began to reconsider.  What did my parents know about my circle of friends when I was in my early 30s?  I was good friends with my parents, and they certainly knew of a number of my friends, but as I think about it, they didn't know what my relationships with my friends were, whether I was highly valued as a friend, what my friends thought of me, how I interacted with them.  So perhaps it's not so surprising that I didn't perceive the nature and depth of the relationships that Krystin had.  I suppose I don't really have to beat myself up about this; it's probably in the nature of human life that parents don't typically know that much about the full social circle and life of their children.  (A friend of mine, with whom I spoke about this, almost laughed.  He said that's the way life is; he doubted his parents knew 10% about his friends and interactions with them.)

* * *

          I have been perfectly happy ever since I retired in June, 2016, and have no desire to find work.  In the days immediately following Krystin's death, for the first time I wished that I had (a temporary) job to return to.  I found that when my mother died, and when my divorce happened, the attention that work demanded was a relief, a distraction.  Now I must make my own distractions to keep myself from breaking into tears on a regular basis.

* * *

          Hindsight is often bothersome.  I don't go to bed at night regretting the decisions we made with Krystin, but I now realize that some of them were wrong.  If, ten years earlier, we had gotten her into a place like Logan House, where she lived the last year and a half, she'd probably be alive today and doing well.  Krystin, I am certain, would have vigorously resisted any such decision—and as legally an adult, could have vetoed it.  I think—again in hindsight—that I perhaps could have persuaded her, but I never even thought about that as an option.  I cannot regret what I did not realize, even though one could argue I should have.

* * *

          Odd to think about now, but given normal life expectancies all round, there is a good chance that when Elliott dies, with him will go the last substantial living memories of Krystin.  (Yes, she had a few first cousins once removed, especially on my brother's side, who knew her, and a first cousin here and there, but none knew her that well when she was an adult.  Others of Krystin's close friends may live long as well, of course, but statistically Elliott is likely to carry the last vivid memories.)  It's at that point—for all of us—that we become a name on a family tree, when there is no longer anyone alive who knew us.

* * *

          I wrote this elsewhere but I will repeat it here.  Given her multiple medical problems, I have suspected for a number of years that I would outlive Krystin, assuming I achieved my predicted life expectancy.  The damage throughout her body, from over a decade of high blood glucose levels, was surely going to have systemic effects in addition to identifiable damage to internal organs.  Being intellectually aware of a future devastating event is not the same as confronting the reality of it now; I cannot know if the shock was slightly mitigated by the foreknowledge (I doubt it).  But shock it was, particularly because I didn't expect it to happen when she was only 32.  I had assumed—hoped—she'd at least make it into her 40s.

What is even more disconcerting and depressing is the disassembling of someone's life by the dispersal of personal belonging and emptying a residence.  We spent several hours in her apartment sorting and saving, over three days.  I have performed this task twice before, for my great-aunt in 1989 and my father in 2005, both of whom were in their 80s; this is the worst case because she was my daughter and because she was so young.  A few boxes saved, many more donated, and "poof," someone is gone.  I rebel at the thought that Krystin will disappear.  She will live in our memories and photos and letters, but her physical presence, in person and place, will not.

One of the challenges Krystin left behind was sorting through her belongings.  That girl liked to buy things!  She had more items per cubic foot of space in her bedroom and living room than anyone else in the northern hemisphere, I think.  Arts and crafts materials, books, clothes, writing and coloring markers, figurines, Christmas and other decorations, flags, CDs, pictures, photo albums.  At this point I have saved more of Krystin's belongings than I should.  But right now I can't let them go; it's part of not letting her disappear.

Christmas crafts, for example.

Create your own ugly socks.
*I* think they're beautiful! Design and arrangement by yours truly.
Happy Christmas eve!

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Other decorations, for example.

Decorations for St. Patty's Day: check!
(And if you know me, then you know this is just the beginning!)

Just a few of the countries I've been to. Nbd.
I'm missing 3 or 4, and my Scotland flag isn't up there because I'm using it for something else.

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* * *

As Krystin wrote, she was extremely conscious about her appearance when in school.  She became, in the words of one of her good friends, a "fashionista."  She continued to attend carefully to her appearance long after she was out of school, but more because she wanted to look good rather than because she didn't want to be different.  As in this Facebook post a couple of months ago:

  

                                                       

With summer coming to an end, gotta go out with a neon, glittery bang.

          And a couple of years earlier, on Facebook:

I got a comment this morning from a co-worker about how the bright colors I wear make the office a happier place. And a few weeks ago, I was told that one of our managers (who is one of THE people to have on your side, and who I work closely with often) said in a meeting that she likes and appreciates the way I dress; that I look professional and brighten up the workplace. I've actually been told that I'm like a mini her, which means I have great potential around here. It's the little things like this that can really make your day.

* * *

Another of the challenges of dealing with Krystin's estate is that she wrote so much.  I have no idea how many deceased adult children have written diaries, blogs, and so on, that a surviving parent must deal with.  I would guess that few (i.e., only a small percentage) leave behind as much written material as Krystin did.  Over 500 pages of blog entries, a couple of hundred pages of diary entries, and perhaps more on her laptop.  What I will do with all of it I have not yet figured out, but I will do something.

          I had some qualms about reading her diaries (and have not done so yet), so I wrote to a number of friends whose judgments in life I trust.  Of the dozen who got back to me, all but one said that I should read them.  One said that I was by default her literary executor; others said I should curate them in such a way that people are not hurt but her story is told in a way that could be helpful for those with diabetes (similar to her essay for We Are Diabetes).  Several wise friends cautioned that I should wait, that I might discover things about her that will affect my relationship with her (I doubt it) and that it might be too painful now (it is).  Several asked me what Krystin would want; of course I don't know, but my guess is that she would want me to do something with all that she has written, including her diaries—and would NOT want me to dispose of it all unread and unused for some good purpose.  She put an enormous amount of time and effort—and her heart—into what she wrote; I am not going to destroy it all.  Apart from the memories that her family and friends retain of her, her writing is Krystin's only legacy.  So I will read them, as well as whatever I find on her laptop, but perhaps not for awhile.  "Awhile" could be weeks, months, or even years.  I will see.

          If any of you have additional suggestions or ideas about what I might do with all that Krystin has written, please let me know.

* * *

          I can at least rest easy on one point:  Krystin knew she had unconditional love from me (and from her mom).  We had the conversation at least a couple of times in recent years.  I told her how much I loved her; she would wave me off orally, saying (to the effect) "I know that, Dad.  It's not a question in my mind."  There was also nothing left unsaid, of that I am sure.

          One sentiment that I imagine many of the parents of deceased children share is "it's not fair that I'm still alive and she's not."  Feeling that way has made it hard for me to laugh about much of anything (although I am slowly recovering my ability to do so).  I'm pretty sure, though, that Krystin would want me to continue to laugh, because she loved doing so herself.

          When Krystin had moved away from us, while at college, in her apartment, and at the group home, at end of my day (always before the end of her day) I would occasionally send a text message.  "Gute Nacht, mein kleines Liebchen" (roughly, "good night, little loved one").  She would always respond "Gute Nacht!"  This was about the extent to which either of us used our college German.  Now, with the profoundest sadness I hope ever to know, I must write "Aufwiedersehen, mein kleines Liebchen" in an imagined final text message.

          I was going to let this memorialization end with the preceding paragraph, but then decided I should leave myself and anyone who reads it with a wry smile.  As someone who herself wrote endlessly, Krystin would be highly amused—but not surprised—at the length of my story here.  It would be a classic case of the pot calling the kettle black, but I know she would say, "it's too long!"

(Notre Dame because that's where her friend Christine Lenzen earned her Master's degree.)

(The photograph on the other side of the memorial card)

Those of you not at the open house did not see the slide show that Kathy prepared.  Here's the URL if you want to take a glance at it.  Click anywhere on a picture to move to the next one.  (I used some of the pictures in this story.)

https://docs.google.com/presentation/d/e/2PACX-1vQeiXQ4FkdfUW9s8GKT3vlqRsgiQm_OJ7Msh1HKSHajwGNiwukk94HyOT3CMlXfvXneDKecSptrYZfv/pub?start=false&loop=true&delayms=5000#slide=id.g291cfe3766_0_360