The Day Life Changed

21 December 2012. Six months after the fact, I look up the date on the internet. People had panicked over it, made up stories about it, imagined what form the ancient Mayans would put to the end of the world. It had loomed in the stars like a black wall through which nothing could be predicted.

And now, it is over. Past. Babies are born and people die. Politicians still lie and rain still falls. The rituals designed to save us from the end of the world were effective, and now we look forward to a new date. I blink back the tears that veil my eyes. So many ends of the world have passed. What will the new marker be?

21 December 2012. I died that day. At least . . . well, I should tell the story from the beginning, not from somewhere in the middle. But where is the beginning? Every time I try to find it, I get caught in backstory that seems essential to explain my history to myself. Life doesn’t translate very well into story.

Should I begin with my first love? Or maybe when I first met Michael? Or with the first time I felt my body betray me—the signposts that seemed so obvious after the fact. But I don’t like feeling foolish.

Perhaps the most necessary beginning lies a year ago. Yes, that’s where I should start.

The day was Independence Day—4 July 2012. Michael and I were lying together on a blanket with shouting teens and crying children and random noisemakers around us. I didn’t notice at first that he was watching me watch the fireworks. Then I felt his breath in my ear and his arm across my waist.

I turned away from him—not wanting distraction. I love fireworks—the great shout of them reaching up to add brightly colored stars to the night sky. But he spoke and suddenly I could see nothing over the sound of his voice. “Alys. You look so perfect, lying here with me. I can’t imagine living without you. Please, say you’ll marry me.”

I looked over to him, and he was holding a ring—gold with a dark blue stone surrounded with little diamonds. I breathed a “yes” and we slipped it on my finger.

He told me later that he’d rehearsed a prettier speech, but what he said was just right. I watched the rest of the show reflected in his eyes. Each star that joined the heaven did so in celebration of us.

The wedding proceeded apace. We told our families and divided our holidays—Thanksgiving with his family and Christmas Eve with mine. We planned the reception for New Year’s Day. The wedding would be the day before. I found my dress, chose attendants (mostly the five sisters that we had between us), picked the caterer, and chose the florist who would deck the hall with pine boughs, mistletoe, and poinsettias.

Michael loved me. That much was good.

But I was tired all the time. I would get up in the night, twice and three times to use the bathroom. I was constantly thirsty. I lost weight. I couldn’t sit through a movie without getting up in the middle to go to the bathroom. By Thanksgiving, I knew there was something seriously wrong, but I refused to admit it. It was just stress, or maybe a virus. Doctors can do nothing for viruses. I could push through it.

Then, on 20 December, just before Christmas, I was so ill that I could barely stand. I wasn’t hungry, and when I forced myself to eat, I couldn’t keep anything down. My body ached. I couldn’t concentrate long enough to read a book or watch a movie.

At bedtime, Michael carried me because I was too tired to stand and walk by myself. He tucked me in and ran his hand across my head as I imagined he would one day do for our children. “This is crazy, Alys.” He traced the line of my cheek. “You’re fading away in front of me. I don’t care if the doctor can’t do anything for a virus. You are going to the doctor, first thing tomorrow morning.”

I just nodded.

That night, my dreams were troubled by blood and monsters. The first time I woke, my heart was pounding and my body soaked the sheets. I drained the water Michael had left on my nightstand. Then I had to get up to go to the toilet. I took the water bottle with me to refill it. I drained it again at the sink before filling it again and stumbling to our bed.

That scene repeated twice before I decided that it would be easier on Michael if I slept on the couch where the sink was closer. It was 3:26 on the microwave. I was hot, so hot, and it was an effort to move. I remember thinking that the floor would be cooler.

I woke in a strange room. Michael was there, sleeping. My mouth was dry but I wasn’t aching anymore. I reached to him, and saw wires trailing from my finger and my arm, and just skin where my ring should be. I looked down. More wires were stuck to my chest under an ugly light blue thing. White blankets, glass walls. Hospital. I drifted back to sleep.

When I woke up again, I was shivering cold. Michael was awake and holding my hand. “How do you feel?”

I tried to talk, but was too dry. I lifted my other hand, which felt heavier than it should, and mimed drinking a glass of water. He pushed a button on my bed and we waited for the nurse.

“She’s thirsty.”

The nurse helped me sit up and held a pink plastic cup to my lips. I drank but it came right back up again. They got me cleaned up again and into a new gown while I helped as best I could.

I cleared my throat, determined to make myself heard. “What’s the matter with me?” At least, that’s what I tried to say. It came out more like “whasamaddawifme.”

But Michael understood. “You’re in the hospital. You have diabetes. They’re doing some more testing to determine what type.”

He reached out his hand to touch my cheek. I turned my head into his hand. “You passed out in the kitchen—I thought you were dead. Another hour and you would have been dead.” I tried to think about that—to tell him I was sorry for worrying him, but my eyes were heavy and I drifted back into sleep.

Time flows strangely in the hospital. I didn’t even have meal times to give structure to my days because they would not let me eat or drink anything. My mouth grew dryer and dryer. They let me suck on ice or swish and spit, but if I tried to swallow, it came right back up. Sometimes it came up even when I didn’t swallow.

Whenever he could, Michael was there. He was there when the doctor came and told me that it was type one—that I would have to take insulin every day for the rest of my life. How ridiculous for a woman of twenty-seven to contract juvenile diabetes.

I held his hand.

He told me to get well, and treated me as though I were glass and did not mention the wedding.

An eternity later my family brought Christmas to the ICU. Gifts were unhygienic, but they brought songs and guilt—my mother was somehow certain that she had done this to me, even though we both knew otherwise. Type one is an autoimmune disease—it has nothing to do with eating habits and only a slight relationship with heredity.

I was the first one in my family to have it.

I made them laugh and kept them with me for visiting hour. No one brought up the wedding. I slept when they were gone.

It was an inconvenient time to be in the hospital—over the holidays when doctors want family as much as any patient so diagnosis/treatment took longer than it might have another time. I graduated to a liquid diet the day after Christmas. Two days later, they put me on solids and sent me up to the ward. I worried about that when I ate my breakfast a bit too fast and it came back up—but they gave me anti-nausea meds and kicked me from the ICU anyway.

In my new room, I had more time to think amid a crash course in diabetes education.

I didn’t know what Michael thought. He told me he loved me. He was there from the time he got off work until I went to sleep.

He was there when the nurse taught me to inject. When another taught me how to take a reading of my blood sugar from my finger. That was harder than the needle. He took notes when the nutritionist came to give me a diet plan and when the diabetes educator came to frighten us about all the slow, lingering ways high blood sugar kills. And the swifter death of a low.

They mentioned possible problems with heart, eyes, kidneys, liver, nerves, and stomach. They told me I could lose my feet or hands. They mentioned the fact that highs can damage the nerves that control intimate response and create higher risk for a fetus developing problems. Lows can inhibit brain function. Every system in my body could be damaged. I would be walking the edge of control forever.

I had passed out and woken up with a new life. I had no idea what that life would be.

It was two days from the wedding. I didn’t even know that I would be able to stand on the day, let alone dance. And I didn’t know what Michael was thinking. And I didn’t have my ring.

When he asked me to marry him, neither of us were anticipating this. He wasn’t just getting the woman I once was. He was getting someone who would be spending the foreseeable future learning to deal with a new complication. And I found myself wondering how hard marriage would be under these circumstances.

I had no choice. I had to live with it. But how could I force him to live with it too?

On 30 December, I finally asked, “So, what do we do, now?”

We were walking a slow circuit around the ward at my slow pace. He just looked at me and made an inquiring hmmm.

“I mean, tomorrow’s our wedding day.” I looked down at my hands and my empty ring finger. “What do we do?”

He shrugged. “I’ve already called around to postpone the reception. But the pastor doesn’t have a problem coming here. All the important people will be here at 10 when visiting hours open.”

I could feel tears welling up. How simple he made it sound. I choked back a sob.

He stopped us and turned me around to face him. “What’s the matter?” He led me over to a chair near the nurse’s station and gathered me so that I could sob against his chest.

I wasn’t very coherent for several minutes, but I finally managed to gasp out, “I’ve just been scared that you didn’t want me anymore.”

He was stroking my back, but at this he stopped. He lifted my chin and looked me straight in the eye. “I love you. And you’re still you. Only now, you’re sometimes a pincushion.”

I laughed.

“The doctor told me your fingers will be swollen for a bit until you get home and active again. But I got you a chain,” he reached into his pocket and pulled out my ring on a long gold chain, “and I’ll add the band tomorrow.”

I could barely see him through my blurry eyes. “I love you.”

“I love you, too.” He helped me up and we started back to my room. “And you’re stuck with me for the rest of your life.”

And so we are.

I look down at my hands resting on the keyboard. Last night, on Independence Day, we finally had our reception. Pine branches and mistletoe and poinsettia are much harder to come by in July. As part of the reception, we exchanged rings, and he slipped them onto my finger for the first time. And then we lay together on our balcony and watched stars join the sky.

I am not resigned to my fate. Diabetes doesn’t make a good story. There’s no arc, just constant, relentless struggle for stability. More than anything I want it to go away. They say a cure is just a decade away. Friends tell me they’ve been saying that for decades.

But until that day, I can live with it.

21 December 2012. The world changed that day. I died that day. But Michael’s right. I still am me, only now, I sometimes play the part of a pincushion.

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