Diabetes Forecast

Sonia Sotomayor: Her Life With Diabetes

A candid interview with the Supreme Court justice about her self-care

By Kelly Rawlings , , , ,
It's what I wish [for] every young diabetic, every person with diabetes: that moment of understanding the difference that you feel between control and no control.
Supreme Court Justice Sonia Sotomayor

Understandably, Supreme Court Justice Sonia Sotomayor won't respond to direct questions about her very important legal decisions. But she will speak warmly and candidly about glucose tablets.

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Justice Sotomayor, 58, has successfully managed diabetes for more than 50 years, and she stores tubes of chalky, sweet tablets everywhere. The tubes can fit into almost any pocket, including, one imagines, under her official black robes. "I have tubes in my pocketbook. … I have them in my car," she says. "I have them in the office. I have them in my travel bag. I have them on the bench. I have them in the judges' conference room."

Her glucose tablets are nothing fancy, available from a pharmacy chain with a store on almost every corner in Washington, D.C. "Tropical Blast is my absolute favorite," she says. "The first flavor of glucose tablets years ago was orange. Very rarely do I get the orange ones because I used them for so many years." And she chuckles. When it comes to managing type 1 diabetes, small but crucial details such as these are part of life.

 Since earlier this year, when Sotomayor's memoir, My Beloved World (Alfred A. Knopf, 2013), arrived on shelves and e-readers, the public has enjoyed an unprecedented peek into this public servant's remarkable story. Sotomayor's father struggled with alcoholism and died too early. She was raised by an emotionally distant single mom scrambling to make ends meet in the vibrant stew of the Bronx projects.

This daughter of Puerto Rican parents launched from Blessed Sacrament grammar school to Cardinal Spellman High School (she was valedictorian) to Princeton to Yale Law School. She served as an assistant district attorney in New York, moved to private practice, and was nominated by President George H. W. Bush to the U.S. District Court for the Southern District of New York. In 1992, she became the first Hispanic federal judge in New York State. After a stint on the U.S. Court of Appeals, she now serves on the highest court of the land. There has been no easy recipe for Sotomayor's achievements, although key ingredients include lots of studying and the realization that her time on earth might be short, so she shouldn't waste a minute.

Cause and Effect

Some of the characteristics that have shaped Sotomayor's life—determination, discipline, dedication, decisiveness—have come in handy with diabetes. Or perhaps diabetes has helped to hone those skills.

In the book prologue, she recounts the morning her parents were yelling at each other (not uncommon in her household) about the responsibility of giving 7-year-old Sonia her insulin injection. She dragged a chair over to the gas stove and boiled a pot of water in which to sterilize the needle and glass syringe. Her mom came into their tiny kitchen and realized that Sonia was preparing to give herself the shot. There's a charming exchange in the book in which Sotomayor ponders why it's called "giving" a shot when she's the one "getting" the shot and, in this case, doing both.

From that moment on, Sotomayor—whose experience with giving injections was limited to practice jabs on an orange at the hospital—took on the basic regimen that has kept her healthy. Sure, she eventually began multiple daily injections, got a blood glucose meter, and has enjoyed new and improved insulin formulations. But the basic responsibility she shouldered at age 7 is still with her today.

Opening Up

Sotomayor kept her diabetes mostly private for many years. "The book describes the fact that, at the age at which I was diagnosed—we're talking now over 50 years ago—diseases of any kind were secrets," she says. "And people just didn't talk about having a condition of any kind. It was considered impolite, of bad form.

"At least for me, as a child, there was a natural abhorrence to a sense of pity, and I didn't want people to think that I was damaged, unclean. Those are the words I'm using because those are the feelings that I vaguely thought as a child."

By her 20s and early 30s, "everybody on some level knew that I had diabetes," Sotomayor says. "It wasn't that I never said the word 'diabetes,' but it wasn't something that I talked about with people. I certainly didn't then the way I do now."

After a particularly severe low during a party at her house (a dear friend watched as a groggy, hypoglycemic Sotomayor grabbed for cake and stuffed her mouth through frosting-smeared lips), Sotomayor realized that she needed to be more open.

"I had, at that moment, my epiphany," she recalls. "Which was, there's something wrong with this. There's something wrong with my keeping from the people who I most love, and who most love me, something that is a critically important part of my life. And why am I so arrogant that I'm not letting my friends give to me, by being able to help me when I'm in need?"

Sotomayor acknowledges that people often struggle with sharing their burdens but that it's important to realize that friends and family members want to help. "Friends and loved ones want to be able to give to you meaningfully," she says. "And meaningfully means explaining to people what it is you need."

So Sotomayor started matter-of-factly spreading the word about her diabetes. "It became more about me being more open, that this is just a natural part of my life," she says. Every year, Sotomayor's new law clerks hear her describe a "sugar low" and what to do to treat one.

Supreme Vigilance

In addition to the ever present glucose tablets, Sotomayor carries a blood glucose meter, which she calls her "tester." She has excellent control of her diabetes and knows how to keep herself on target. Still, unexpected lows can strike a Supreme Court justice just like any person with diabetes. "I'm super vigilant when I'm in court," she says. With her tight control and long duration of diabetes, she no longer has classic hypoglycemia symptoms, such as sweating. "My most obvious sign, which I can't see, is paleness. If I start feeling any sort of lightness coming on, I immediately check."

Sotomayor's enormous power of concentration can be more foe than friend when it comes to diabetes. "When I'm doing anything, I am totally focused," she says. "That can be dangerous if you're disconnected from feeling what your body is saying. And my worst lows have happened in the middle of some activity in which I've been really concentrating. It's still a challenge for me to not ignore, or not to disconnect from, self-monitoring during those intense concentration periods.

"Even now, what I do is sort of try to train myself, even in the middle of my most concentrated period, to take a second, just do a self-check. And if I'm in doubt and don't have time to do a sugar, a blood test, I just drink some Gatorade. Just as a prophylactic. And it has worked very well in keeping me in better control of my lows during those intense periods."

Show and Tell

Part of Sotomayor's diabetes routine includes taking a shot of insulin when she needs it, such as before a meal. She attends a lot of functions and frequently eats in restaurants. "There is many a five-star restaurant that I have shot up at openly," she says. The faster-acting insulins have necessitated taking a shot at the table. "You only have like a 15-minute lead time for the insulin to start working," she says. "If you're as controlled as I am, that 15 minutes is critical. You better start eating." She'd rather give the shot at the table than inconvenience the group by getting up and going to the bathroom to inject once the food arrives.

Most people at the table don't even notice the injections, she says. "Occasionally, an observant and thoughtful person—because I think thoughtful people are the ones who pay attention to those around them—will notice. Those who have no knowledge of diabetes will just ask and I'll tell them.

"Occasionally I'm at a place where there are children at another table. And I've never had a child look away with disgust. I've always had children look at it with fascination. And always, if I'm leaving, … I'll walk past the child and say, 'You saw me giving myself my shot, didn't you?' … I'll say to them, 'I'm a diabetic and I need that medicine before I eat.' "

Gaining knowledge has propelled Sotomayor, and she champions education. "I think knowledge is important for a society, generally," she says. "So, knowledge about diabetes, which is such a common part of our society today—and growing at alarming rates in terms of diagnoses—suggests that we have to be more open about the disease, more open about its care."

Since the book, there seems to be at least one adult or child with diabetes who approaches her at every event. And each person is likely to bask in her warm concern. "I don't presume that I know that I can teach them something because living with diabetes is a process and you grow into it," she says. "Having someone speak openly about it who has had a life like mine, a public life, is helpful to some people."

A Word From the Wise

Of course, Sotomayor knows what she's talking about. "There is a huge amount of fear when you're first diagnosed with a disease of any kind, but particularly one like diabetes, where one of the advantages is constant control over the long term, but in the short term, the process can feel overwhelming," she says. "All the things that you have to do and pay attention to can seem much more than you're capable of, especially if you're a child—you already feel there are many more things you'd rather do."

On that particular point, she would reassure a child newly diagnosed with diabetes that "everything becomes second nature very quickly. It's not so tough after a little while." As for the parents of children with diabetes, she says her message is likely to be "Don't stand in the way of their dreams, don't stand in the way of their activities, don't stand in the way of them taking control of their own lives. Teach them; don't do it for them."

New and Improved

Sotomayor can look back at several improvements that enhanced her self-management through the decades. She is a veteran of intensive insulin therapy, although she doesn't use some of the newer technologies, such as an insulin pump and a continuous glucose monitor. Her longtime endocrinologist, Andrew J. Drexler, MD, encouraged her to use multiple daily injections beginning in the mid-1980s, well before intensive therapy was proved to reduce the risk of complications. And she's proud to report no retinopathy (eye damage) or neuropathy (nerve damage).

As she names her top three diabetes care improvements over the past half century, she brings the perspective of one who once soldiered on with glass syringes and unreliable urine testing. Disposable syringes are first on her list. "I went for a number of years with the boiling and the needles hurting," she says. "That was a great breakthrough at its time.

"Obviously, the blood tester was a huge breakthrough because it really permitted control of diabetes the way we experience it today. But I think the third thing … is synthetic insulins. Because they really have changed the treatment of diabetes and permitted control to actually work." She recalls the imprecise science of trying to measure what you ate and the impact of widely fluctuating older insulins. The insulin analogs, according to Sotomayor, have permitted greater control with the release, consistency, and timing of the medication.

Feeling Good

When it comes to people who are struggling with chronically high blood glucose levels, Sotomayor is not here to judge, but she does have an important message: "It's what I wish [for] every young diabetic, every person with diabetes: that moment of understanding the difference that you feel between control and no control." When you're not in control of diabetes, you just don't feel good. "And that feeling drags your spirits down, it robs you of energy, it takes away—not just from your life but from the quality of just enjoying life," she says.

"We rarely understand how well tuned our bodies are, of even how the littlest thing, like your little toe, plays such an important role … until you break your toe. … And then that throbbing organ makes you realize that it's around and is important to your well-being. Well, something systematic like diabetes makes you—and obviously made me and still does—appreciate how precious feeling good is."

Like Sotomayor's appointment to the Supreme Court, diabetes may well be for life. There's every indication that she will continue to rule on the condition with distinction.



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