My Beloved World

by Sonia Sotomayor

  When she finally lost her fight the following spring, the loss devastated everyone. Each death of someone close to me has come as a slap, reminding me again of my own mortality, compelling me to ask: What am I accomplishing? Is my life meaningful? When Abuelita died, I felt spurred to study even harder in college. When it was Nelson’s time, I could no longer put off thinking about life beyond the DA’s Office. Fran had entrusted me with the groundbreaking work in intellectual property that would become her legacy, and when she died, I threw myself into it with my best single-mindedness. Still, to see her go at fifty-seven, only one year younger than I am now, fired my habitual sense that I might not have enough time to make a real run at my ultimate goal.

  I’ve lived most of my life inescapably aware that it is precious and finite. The reality of diabetes always lurked in the back of my mind, and early on I accepted the probability that I would die young. There was no point fretting about it; I have never worried about what I can’t control. But nor could I waste what time I had; some inner metronome has continued to set a beat I am unable to refuse. Now diabetes has become more manageable, and I no longer fear falling short in the tally of years. But the habit of living as if in the shadow of death has remained with me, and I consider that, too, a gift.

  ON A GLORIOUS DAY at the end of June, a group of friends were celebrating my thirty-seventh birthday with a barbecue in my backyard. I was lucky to have stumbled on the apartment right down the block from my old place and Dawn’s, lucky to have grabbed it at a discount before the co-op conversion was even concluded, and luckier still that Dave Botwinik helped me find an unusually affordable loan for the down payment. Best of all, the backyard was perfect for parties.

  Everyone was taken care of. All their glasses were filled. Let them dance, I thought. Exhausted, I needed to lie down for a few minutes. I didn’t feel right, light-headed, but once supine I couldn’t get my body to move. Eventually, I managed to drag myself off the bed, opening the screen door to the backyard. But that was as far as I could get. I needed to sit down right there. Fortunately, there was a step. And there was Theresa. She was talking to me, but I couldn’t make out the words. She came closer, still talking gibberish. There was something in her hand that I wanted badly. I needed it. I grabbed for it, but my aim was shaky. I smashed the piece of birthday cake into my mouth. Theresa stood there with her own mouth open in shock. I must have looked pretty disconcerting with frosting smeared all over my face.

  When I recovered and we talked about what had happened, Theresa told me that although she was vaguely aware that I was diabetic, she had no knowledge of what a sugar low looked like. Friends who saw me lie down just assumed that I’d had a few too many. But I was so busy playing host that I hadn’t had even one yet. The card I’d been given as a child was still in my wallet, carried around for all these years. I’d made it to my thirty-seventh birthday with no occasion for someone to pull it out. It said:

  I HAVE DIABETES

  I AM NOT drunk. If I am unconscious or acting strangely, I may have low blood sugar.

  EMERGENCY TREATMENT

  I need sugar immediately. If I am able to swallow, give me candy, soda pop, fruit juice or table sugar. If I cannot swallow or do not recover within 15 minutes, call a doctor or the closest emergency medical help and tell them I have diabetes.

  Very few of my friends were aware of my being a type 1 diabetic and completely dependent on insulin shots. Not that I was aware of hiding it. I would have said that I was being politely discreet, but the truth is my secrecy was a deeply ingrained habit. I was averse to any revelations that might have seemed a play for pity. And managing this disease all my life had been the hallmark of the self-reliance that had saved me as a child, even if it may have partly cost me a marriage. I didn’t need anyone’s help with it. But in truth, I was more vulnerable than I was willing to admit.

  The secrecy wasn’t simply in my nature. When I was young, disabilities and illnesses of all sorts were governed by a code of silence. Such things were private matters, and you didn’t speak about them outside the family. I wouldn’t have dreamed of giving myself a shot in public, though I rarely had to worry about that because I was only taking one shot a day, first thing in the morning. If the situation somehow arose, traveling or spending a night away from home, my mother would tell me to go do it in the bathroom.

  When I was a teenager, there was nothing to be gained by advertising that I was carrying around needles and syringes in a neighborhood where so many people were using heroin. Walking to work at Prospect Hospital one day, I tripped and spilled the contents of my bag at the feet of a police officer. There on the sidewalk lay my “works”; I happened to be carrying a syringe and needle, having planned to spend the night at Abuelita’s. “Oh, no, no,” said the cop incredulously as I explained, scooping everything up as fast as I could with trembling hands. My explanation carried no weight; neither did my bottle of insulin. What crazy story would a junkie come up with next? I had to persuade him to walk with me to the hospital so my supervisor could vouch for me. I was completely terrified: an arrest would have dimmed any hope of college, let alone law school.

  By the time I was in college, the condition had seemed to become more of a nonissue, hardly rating a mention to anyone. I continued with the same regimen—one shot a day—no longer checking in at the clinic at Jacobi Medical Center, where I would have become aware of treatment advances. As it was, I still had no more accurate way of testing my blood glucose than those practically useless, delayed-report urine strips. But so long as I continued to eat carefully and mind how I was feeling, I was able to manage. That discipline was easier than the alternative: I hated the heavy lethargy that came with a blood sugar spike; and the effects of a dip—sweats, trembling, and disorientation—were unpleasant enough that I was quick to answer them with extra sugar.

  It didn’t occur to me, however, that my own body might be changing. Subtle hormonal shifts, long after the turbulence of puberty, can affect blood sugar levels. Exercise can make a difference too, speeding up the absorption of the insulin recently injected. Constantly on the move at Princeton, whether bicycling around campus or racing upstairs to class, I was oblivious to how, with these factors added, blood sugar levels could drop so fast that the usual telltale symptoms had no time to register before I was too disoriented to respond.

  During my junior year, I started to have trouble waking up in the morning. Once I was so groggy that I managed to take an exam without being fully conscious and even make it back to bed, only to wake up later in a panic that I had missed the test. I still haven’t figured out how I could have aced it. Another time I woke up and answered the phone with so little presence of mind that Kevin’s mother finally figured out we were sleeping together. And then one morning I didn’t wake up at all. If my roommate hadn’t circled back to the dorm at an odd time, contrary to habit, she wouldn’t have found me unconscious on the bed. After she was unable to rouse me, I ended up in the infirmary for several days.

  All through college, law school, and my years at the DA’s Office, I would stick with essentially the same regimen I’d had as a child. It wasn’t until I reached thirty and settled in Brooklyn that I decided to seek out a specialist in type 1 diabetes. The advances in treatment that had passed me by were significant. I started to catch up, using improved forms of insulin and taking shots twice a day. When my first doctor moved, she referred me to Andrew Drexler, one of the foremost diabetic endocrinologists in the country. Under Andy, now a cherished friend and confidant, my treatment is as good as it gets.

  I still use the tried-and-true approach of injecting insulin, though many diabetics today have switched to convenient insulin pens or pumps with computerized controls to adjust dosages continuously during the day. Urine strips are ancient history. In the mid-1980s, I bought my first portable blood glucose meter, which cost what seemed like a fortune at the time. It was four times the size of today’s versions, which provide a reading in five seconds. I test my bloo
d sugar and give myself shots five or six times a day now. When deciding what I’m going to eat, I calculate the carbohydrate, fat, and protein contents. I ask myself a litany of questions: How much insulin do I need? When is it going to kick in? When was my last shot? Will I walk farther than usual or exert myself in a way that might accelerate the absorption rate? If I weren’t good at math, this would be difficult.

  This regimen certainly takes a lot more attention than I gave to the disease when I was young, but it also allows for a much more fine-tuned regulation of my blood sugar levels. The benefit adds up, since the dire complications of diabetes—heart disease, blindness, neuropathy that can lead to amputation of limbs—are mostly the effects of long-term damage caused by chronically high levels. Meticulously keeping mine within normal range gives me an excellent chance of a normal life span. No matter how careful I am, though, a fever or infection can send my sugars soaring. Trauma or extreme stress has the same effect.

  Even with the most conscientious monitoring, blood sugar can swing suddenly in a way that is a threat to one’s life not in the future but in the immediate present. That’s what happened the day I grabbed that hunk of birthday cake from Theresa. Surprises can insinuate themselves insidiously. I knew, for instance, how much carbohydrate was in a meal at a typical Chinese restaurant, but one time my calculations were thrown perilously off by a very different style of cooking at a Szechuan place of great refinement. Jet lag or losing track of shifts in time zone probably figured in another crisis. I’d flown to Venice for the wedding of a friend, an Italian lawyer who had worked for a time at Pavia & Harcourt. Somehow, after I checked into my hotel room, my blood sugar dropped precipitously, and I passed out.

  Fortunately, Alessandro and his wife, Fe, had come to Venice for the wedding too. They realized something was wrong when I didn’t show up on time. After trekking across the city to my hotel, Alessandro threatened to break down my door if the concierge didn’t put aside hotel policy and unlock it. Orange juice was administered, an ambulance was called, which was in fact a boat and too big to squeeze into our back-alley canal. So a Venetian stretcher, which is to say a chair on poles, was provided, and I was conveyed, variously in and out of consciousness, to a hospital that was really a nursing home in an ancient convent, with facilities to match. I tried to show the doctor how to use my fancy glucose meter, but he was having none of it. “I am the doctor; you are the patient,” he insisted, as Alessandro translated with chagrin.

  We laughed at the story afterward, especially as recounted with Alessandro’s gloriously expressive Italian gestures, conjuring images of Fe in a stunning blue evening gown and himself in black tie preparing to batter my door down, or the ultimate indignity of having the Italian hospital staff refer to the two of them as “the Americans.”

  Although they stick out in my memory, such episodes didn’t happen very often and have been rare in the last decade, as technology has improved and my body has settled into middle age. Still, each time I found myself in a blood sugar crisis, I couldn’t help but notice that some unlikely intervention had saved my life, whether a friend just happening by or phoning out of the blue, or, one time, Dawn’s little Rocky, who, finding me unconscious, barked furiously, refusing to be calmed, until he drew attention where it was needed. Contemplating such good fortune reinforced my sense that Abuelita was still watching over me. But I decided that was no basis to push my luck. Though the Fendis and I would, for years to come, dine out mirthfully on the story of the Venetian affair, the bald truth is that if Alessandro had not been aware of my diabetes, I’d be dead. It was the final confirmation I needed that for safety’s sake I had to be open about my condition. And since taking my present job these many years later, when the danger seems to have receded, I have another good reason to claim the disease publicly. I don’t know whether they still give diabetic children a list of professions they can’t aspire to, but I’m proud to offer living proof that big dreams are not out-of-bounds.

  THERE IS ONE PERSON with whom I have deferred opening up as long as possible. The stories of those close calls suggestive of my nine lives have never been mentioned to my mother. I’ll have to deal with the fallout when she reads this book. Her guilt, pity, sadness, and ultimately fear of my disease are still beyond all reason, and at times have driven me nuts. But then, any problem of mine she has discovered belatedly has resulted in the same hysteria. Junior reports she once called him to complain that I don’t tell her what’s happening. He answered her far better than I could have: “Sonia’s never going to tell you anything, Mami, because you always overreact.” Even more important, he told her, he didn’t know a happier person than his sister. “Sonia lives her life fully. If she dies tomorrow, she’ll die happy. If she lives the way you want her to live, she’ll die miserable. So leave her alone, okay?”

  I love my brother dearly. He knows me in ways the rest of the world never could. We’ve always watched out for each other. His kids still crack up whenever they hear me calling him Junior—he’s Juan to everyone else now—but he’ll always be Junior to me, even if he’s no longer such a nuisance.

  Mami hung up on him that time, he said. I could picture her sitting there in Co-op City, fuming in her jungle of houseplants, stems shooting up to the ceiling, the vines clinging to the corners, fringing the picture windows. That message would not go over easily, but eventually it would be received.

  THE STORY OF my secrecy and the self-reliance that produced it does not begin and end with my diabetes. But I’ve come to see that it does begin and end with my mother, who became my most constant emotional paradigm, informing my character for good and for ill, as well as the character of my relations with her.

  Many times I felt there was a wide moat separating me from the rest of the world, in spite of my being, by all accounts, a great listener to all my friends. They felt free to tell me their troubles. Like my mother, I would suspend judgment, feel their pain, perhaps even point out a fact they might have overlooked: I have a knack for translating the mysteries of other people’s minds and could open their eyes to what the world looked like to their husband, their boss, or their mother. The only trick I couldn’t manage was to ask the same of them.

  Sharing was not my style; my problems were mine to deal with. Ever since fifth grade, ever since putting behind me the misery and isolation visited upon an alcoholic’s family, ever since that cute boy, Carmelo, convinced me that being smart could be cool, I’d surrounded myself with a crowd of friends. And yet inside I remained very much alone. Perhaps even within my marriage, which, for all our mutual regard and affection, had suffered from a certain self-sufficiency of mine that frustrated Kevin. It was not until these years after the DA’s Office, as I started making more purposeful strides toward the person I wanted to be professionally, that I could begin to dream of reshaping the person I was emotionally, too. My faith in my potential for self-improvement, which had been the foundation for all my academic and professional success so far, would now be tested in more inaccessible regions of the self. But I was optimistic: if I could help fix your problems, surely I can fix my own.

  I’d always believed people can change; very few are carved in stone or beyond redemption. All my life I’ve looked around me and asked: What can I learn here? What qualities in this friend, this mentor, even this rival, are worth emulating? What in me needs to change? Even as a child, I could reflect that my anger was accomplishing nothing, hurting only myself, and that I had to learn to stop in my tracks the instant I felt its surge. Learning to be open about my illness was a first step, and it taught me how admitting your vulnerabilities can bring people closer. Friends want to help, and it’s important to know how to accept help graciously, just as it’s better to accept a gift with “Thank you” than “You shouldn’t have.”

  If there’s a measure of how well I’ve succeeded in this self-transformation, it’s that very few of my friends—even those who have known me the longest—can remember the person I was before undertaking the effort.
Such is the nature of familiarity and memory. They also swear that they’ve always known about my diabetes and claim memories of seeing me give myself shots long before I ever did so openly. But there is no better indicator of progress, or cause for pride, than the thaw in relations with my mother.

  Mami gone, checked out, the empty apartment. Her back to me, just a log in the bed beside me as a child. Mami, perfectly dressed and made up, like a movie star, the Jacqueline Kennedy of the Bronxdale Houses, refusing to pick me up and wrinkle her spotless outfit. This was the cold image I’d lived with and formed myself in response to, unhappily adopting the aloofness but none of the glamour. I could not free myself from its spell until I could appreciate what formed it and, in its likeness, me.

  There was so much about my mother I simply hadn’t known. When she was struggling through her nursing degree at Hostos Community College, terrified of failure, facing every written exam like a firing squad, she had told me a little about her school days in Lajas and San Germán. About her fear of being ridiculed by classmates, scolded by teachers, her certainty that she was stupid. Beyond that I knew practically nothing about her childhood. Her most telling stories would trickle out slowly, in dribs and drabs, but it was only when I had the strength and purpose to talk about the cold expanse between us that she confessed her emotional limitations in a way that called me to forgiveness.