My Beloved World (2 page)

My mother showed me how to hold the match while turning the dial, to make the flame whoosh to life in a blue ring. Together we filled the pot with water, enough to cover the syringe and needle and some extra in case it boiled down. She directed me to wait for the bubbles and only then to start counting five minutes by the clock. I had learned how to tell time the year before, in first grade. After the water had boiled long enough, she said, I would still need to wait for the syringe to cool. I watched the pot and the invisibly slow creep of the clock’s hand until tiny, delicate chains of bubbles rose from the glass syringe and the needle, my mind racing through a hundred other things as I marked the time.

Watching water boil would try the patience of any child, but I was as physically restless as I was mentally and had well earned the family
nickname Ají—hot pepper—for my eagerness to jump headlong into any mischief impelled by equal parts curiosity and rambunctiousness. But believing that my life now depended on this morning ritual, I would soon figure out how to manage the time efficiently: to get dressed, brush my teeth, and get ready for school in the intervals while the pot boiled or cooled. I probably learned more self-discipline from living with diabetes than I ever did from the Sisters of Charity.

Fainting in church was how it all started. We had just stood up to sing, and I felt as if I were suffocating. The singing seemed far away, and then the light from the stained-glass windows turned yellow. Everything turned yellow, and then it went black.

When I opened my eyes, all I could see was the principal, Sister Marita Joseph, and Sister Elizabeth Regina, their worried faces upside down and pale inside their black bonnets. I was lying on the tile floor in the sacristy, shivering cold from the water splashed all over my face. And scared. So they called my mother.

Although I went to Mass every Sunday, which was obligatory for students at Blessed Sacrament School, my parents never did. When my mother arrived, the Sisters made a big fuss. Had this ever happened before? Come to think of it, there was the time I’d fallen off the slide, the sudden dizziness as I stepped over the top of the ladder before the ground came rushing up to me in a long moment of panic … She had to take me to the doctor, the nuns insisted.

Dr. Fisher was already firmly established as a family hero. All of our relatives were under his care at one time or another, and his house calls did as much to ease fears and panics as they did aches and pains. A German immigrant, he was an old-fashioned country doctor who just happened to be practicing in the Bronx. Dr. Fisher asked a lot of questions, and Mami told him I was losing weight and always thirsty and that I had started wetting the bed, which was so mortifying that I would try not to fall asleep.

Dr. Fisher sent us to the lab at Prospect Hospital, where my mother worked. I didn’t see trouble coming, because I perceived Mr. Rivera in the lab to be a friend of mine. I thought I could trust him, unlike Mrs. Gibbs, my mother’s supervisor, who had tried to hide the needle behind her back when I’d had my tonsils out. But when he tied a rubber
tube around my arm, I realized this was no ordinary shot. The syringe looked almost as big as my arm, and as he got closer, I could see that the needle was sliced off at an angle with the hole gaping like a little mouth at the end of it.

As he approached, I screamed, “No!” Knocking the chair back, I ran across the hall and right out the front door. It seemed as if half the hospital were running right behind me, shouting “Catch her!” but I didn’t turn around to look. I just dove under a parked car.

I could see their shoes. One of them bent down and stuck his nose into the shadow of the undercarriage. Shoes all around now, and hands reaching under the car. But I scrunched up like a turtle, until someone caught me by the foot. I was hollering so loud as they dragged me back to the lab that I couldn’t have hollered any louder when the needle went in.

When we went back to Dr. Fisher after they took my blood, it was the first time I’d ever seen my mother cry. I was outside in the waiting room, but his office door was open a crack. I could hear her voice break and see her shoulders quaking. The nurse closed the door when she noticed I was watching, but I’d seen enough to understand that something was seriously wrong. Then Dr. Fisher opened the door and called me in. He explained that there was sugar in my blood, that it’s called diabetes, and that I would have to change the way I ate. He reassured me that the bed-wetting would end when we had things under control: it was just the body’s way of getting rid of excess blood sugar. He even told me that he also had diabetes, although I understood later that he had the more common type 2, while I had the rarer juvenile diabetes, or type 1, in which the pancreas stops producing insulin, making daily injections of insulin necessary.

Then he took a bottle of soda from the cupboard behind him and popped the top off. “Taste it. It’s called No-Cal. Just like soda but without sugar.”

I took a sip. “I don’t really think so.” Poor Dr. Fisher. My mother insisted that we always be polite even if that meant softening a strong opinion, a lesson that stuck with me. Perhaps my eventual enjoyment of being a litigator owes something to the license it gave me to disagree more openly with people.

“Well, there are lots of other flavors. Even chocolate.”

I thought to myself: This doesn’t add up. He’s making it sound as if it’s no big deal. Just skip dessert and drink a different soda. Why is my mother so upset?

We went straight from Dr. Fisher’s office to my grandmother’s home. Abuelita tucked me into her bed, even though it was the middle of the afternoon and I had long outgrown naps. She closed the curtains, and I lay there in the half dark listening as the front door kept opening and voices filled the living room. I could hear my father’s sisters, Titi Carmen and Titi Gloria. My cousin Charlie was there too, and Gallego, my step-grandfather. Abuelita sounded terribly upset. She was talking about my mother as if she weren’t there, and since I didn’t hear Mami’s voice at all, it was clear that she had left.

“It runs in families,
como una maldición
.”

“This curse is from Celina’s side, for sure, not ours.”

There was speculation about whether Mami’s own mother had died of this terrible affliction and talk of a special herb that might cure it. Abuelita knew all about healing with herbs. The least sniffle or stomachache had her brewing noxious potions that would leave me with a lifelong aversion to tea of any sort. Now she was scheming with my aunts to get word to her brother in Puerto Rico. She would tell him where to find the plant, which he was to pick at dawn before boarding a flight from San Juan the same day so she could prepare it at the peak of potency. He actually pulled it off, but sadly Abuelita’s herbal remedy would prove ineffective, and this failure of her skill in a case so close to her heart would disturb her deeply.

Abuelita’s obvious anxiety that afternoon, and the talk of my other grandmother’s death, did achieve one thing: it made me realize how serious this situation was. Now my mother’s crying made sense to me, and I was shaken. I was even more shaken when I learned that I had to be hospitalized to stabilize my blood sugar levels, which was routine in those days.

IN 1962
, when I was first diagnosed, the treatment of juvenile diabetes was primitive by today’s standards, and life expectancy was much
shorter. Nevertheless, Dr. Fisher had managed to locate the best care for the disease in New York City, and possibly in the entire country. He discovered that the Albert Einstein College of Medicine, a leader in juvenile diabetes research, ran a clinic at Jacobi Medical Center, a public hospital, which by luck happened to be located in the Bronx. The vastness of Jacobi Medical Center awed me. It made Prospect Hospital seem like a dollhouse.

Every morning, starting at eight o’clock, they would draw my blood repeatedly for testing. Hourly, they used the thick needle with the rubber tube on my arm, and every half hour they would slice my finger with a lance for a smaller sample. It continued until noon, and the next day they did the same thing over again. This went on for an entire week and part of the next. I didn’t holler and I didn’t run, but I have never forgotten the pain.

Other things they did, though less painful, seemed strange. They attached electrodes to my head. They brought me to a classroom in the hospital where I sat facing rows of young doctors who stared at me as an older doctor lectured about diabetes, about the tests they had done and more they still had to do. He rattled off terms like “ketones,” “acidosis,” “hypo-this and hyper-that,” and much else that I didn’t understand, all the while feeling very much the guinea pig and terrified.

BUT EVEN MORE THAN
the clinical procedures, it was my absence from school for so long that set off my inner alarm. I knew I had to be seriously sick for my mother to allow it. School was just as important as work, she insisted, and she never once stayed home from work. Equally worrying, she brought me a present almost every day I was in the hospital: a coloring book, a puzzle, once even a comic book, which meant she was thinking hard about what I would like instead of what she wanted me to have.

My very last day at the hospital started again at eight o’clock with the big needle and the lances. My arm was aching, and my fingers were burning right from the very beginning. I made it through the first two hours, but just as they were lining up their instruments for the ten o’clock torture, something inside me broke. After all those days of being brave
and holding it in, I started crying. And once I started, I couldn’t stop. My mother must have heard me because she burst in, and I flew sobbing into her arms. “Enough!” she said, fiercer than I’d ever seen her. Fiercer even than when she fought with my father. “We stop now. She’s done.” She said it in a way that nobody—not the lab technician standing there with the syringe in his hand, not any doctor in Jacobi Medical Center—was going to argue with her.

“
DO YOU KNOW
how much to give, Sonia?”

“Up to this line here.”

“That’s right. But do it carefully. You can’t give too little and you can’t give too much. And you have to be careful, Sonia, not to let any bubbles get into the needle. That’s dangerous.”

“I know how to do this part. But it doesn’t make sense to say I’m
giving
it, Mami. I’m the one who’s
getting
the shot.”

“Whatever you say, Sonia.”

“I’m doing both.”

And I did. I held my breath, and I gave myself the shot.

I
WAS NOT YET
eight years old when I was diagnosed with diabetes. To my family, the disease was a deadly curse. To me, it was more a threat to the already fragile world of my childhood, a state of constant tension punctuated by explosive discord, all of it caused by my father’s alcoholism and my mother’s response to it, whether family fight or emotional flight. But the disease also inspired in me a kind of precocious self-reliance that is not uncommon in children who feel the adults around them to be unreliable.

There are uses to adversity, and they don’t reveal themselves until tested. Whether it’s serious illness, financial hardship, or the simple constraint of parents who speak limited English, difficulty can tap unsuspected strengths. It doesn’t always, of course: I’ve seen life beat people down until they can’t get up. But I have never had to face anything that could overwhelm the native optimism and stubborn perseverance I was blessed with.

At the same time, I would never claim to be self-made—quite the contrary: at every stage of my life, I have always felt that the support I’ve drawn from those closest to me has made the decisive difference between success and failure. And this was true from the beginning. Whatever their limitations and frailties, those who raised me loved me and did the best they knew how. Of that I am sure.

The world that I was born into was a tiny microcosm of Hispanic New York City. A tight few blocks in the South Bronx bounded the lives
of my extended family: my grandmother, matriarch of the tribe, and her second husband, Gallego, her daughters and sons. My playmates were my cousins. We spoke Spanish at home, and many in my family spoke virtually no English. My parents had both come to New York from Puerto Rico in 1944, my mother in the Women’s Army Corps, my father with his family in search of work as part of a huge migration from the island, driven by economic hardship.

My brother, now Juan Luis Sotomayor Jr., M.D., but to me forever Junior, was born three years after I was. I found him a nuisance as only a little brother can be, following me everywhere, mimicking my every gesture, eavesdropping on every conversation. In retrospect, he was actually a quiet child who made few demands on anyone’s attention. My mother always said that compared with me, caring for Junior was like taking a vacation. Once, when he was still tiny and I wasn’t much bigger, my exasperation with him inspired me to lead him into the hallway outside the apartment and shut the door. I don’t know how much later it was that my mother found him, sitting right where I’d left him, sucking his thumb. But I do know I got walloped that day.

But that was just domestic politics. On the playground, or once he started school at Blessed Sacrament with me, I watched out for him, and any bully thinking of messing with him would have to mix it up with me first. If I got beat up on Junior’s account, I would settle things with him later, but no one was going to lay a hand on him except me.

Around the time that Junior was born, we moved to a newly constructed public housing project in Soundview, just a ten-minute drive from our old neighborhood. The Bronxdale Houses sprawled over three large city blocks: twenty-eight buildings, each seven stories tall with eight apartments to a floor. My mother saw the projects as a safer, cleaner, brighter alternative to the decaying tenement where we had lived. My grandmother Abuelita, however, saw this move as a venture into far and alien territory,
el jurutungo viejo
for all practical purposes. My mother should never have made us move, she said, because in the old neighborhood there was life on the streets and family nearby; in the projects we were isolated.