CARMELA CARUSO
A SHORT-LIVED LIFE
I’ve never known what it’s like to believe I’ll live long into old age. I’ve always thought I’d die young. In one of my earliest memories I’m sitting on the gray wall-to-wall carpet in my parents’ living room when a premonition comes. I feel so sure it is true that I write the number on the lid of a nearby stationery box—34—the year I will die.
It’s rare for someone to be born with a genetic disorder that cannot be traced to anyone in her family. It’s rare for her to live to enjoy cake on her first birthday. It’s even more unlikely that she’ll see the pendulum mood swings of her teenage years. Adulthood is only a distant dream not likely to come true to the unwell child.
I was six months old when I was diagnosed with an incurable kidney disease. It was discovered the day the Challenger exploded seconds after launching, killing everyone on board. To my parents, it felt as if their entire world had gone up in flames. I was too young to remember the news stories or the fever that rose so high my full head of hair fell out.
After the first hospitalization, I passed through early childhood relatively quietly. Then, at age seven, I realized just how fragile my life was.
The pain began in my back, warm and sharp like a pulled muscle. The heat continued to radiate outward and the sensation became so intense I could barely walk. I finally confessed to my parents there was something wrong and was admitted immediately to the hospital where I remained suspended somewhere between life and death for two weeks.
When I was released my already fearful parents increased their protective grip. I didn’t learn to ride a bike. I wasn’t allowed to wander off on my own and I became my mother’s shadow any time I was not in school. I couldn’t play sports, take cheerleading, go on class trips, attend sleepovers, or last long without my mother reminding me to drink water or use the bathroom.
Bi-annual doctor’s visits confirmed my kidneys were slowly getting worse. Already surprised that I was still alive, doctors couldn’t pretend to predict for how much longer my kidneys would keep functioning. I, however, held onto the number 34.
As a child I imagined confessing to my husband the night before our wedding that I had a kidney disease. I’d tell him then too that I wouldn’t have children—the stress of pregnancy would be too much on my system and our offspring would have a 50% chance of inheriting the disease. I couldn’t put their lives at risk or make them live with the sense of impending death that I’d carried with me for as long as I could remember. My husband would have to be willing to watch me die a slow and painful death after months of dialysis. I was willing to leave him if he couldn’t promise to be with me through it all.
In my childhood fantasies, I imagined if he abandoned me I’d be okay. My real passion was writing and I planned to devote myself to it with or without a partner. I’d publish a book before I died. I started writing my first stories when I was eight just in case the end came sooner than I expected.
Even though I outgrew a lot of the ideas of my childhood, I held fast to my death date. In my late twenties, in what I expected to be the final years of my normal functioning before the sudden and rapid decline set in, I began clinging to a hope that I might be cured.
It started with yoga classes at the gym. When physical postures weren’t the magic wand I needed to wave, I investigated half a dozen other modalities and trends. I ate only raw, vegan food for two years, studied Ayurveda, meditated every morning, sweated through cleanses, went on spiritual retreats, and became a Reiki master hoping I’d heal myself with my own hands. None of it worked. I gave up, I let go, and then, although I didn’t find a cure, I found peace of mind.
The year before I turned 30 I stopped believing that I would soon be on dialysis, waiting on the impossibly long list for a kidney transplant, and watching my death day draw near. I realized that although my blood counts would suggest otherwise, I was a strong, fit, healthy woman with many more years to live. As a testament to life, I decided to run 30 miles on my 30th birthday to raise money for the National Kidney Foundation and awareness for people living with a chronic illness.
I trained for the run by myself on the side of the road through the snowiest winter on record in Massachusetts. My usual run, which I completed ten times a year at most, was a slow and shaky 2.5 mile neighborhood loop that left my knees popping and locking for a week after. 30 miles seemed absurd and yet in just over three months I built my way up to it.
Before the final run, I was looking through boxes in my childhood bedroom when I uncovered the old stationery box where I’d written my death date prediction. There on the cover in slow, deliberate handwriting was the number 94. I’d spent decades of my life believing I would die young based on a premonition I had as a child and here I discovered that my memory had been wrong all along. It wasn’t 34 that I’d predicted, but 94.
In two years I will live my 34th year and in three I plan to celebrate my 35th. Although my kidney function hasn’t undergone a miraculous upswing, it has remained stable over the past five years of health consciousness and that in itself feels like reason to celebrate.
I’m glad that I spent most of my life believing I would die young. Living with an incurable disease has helped me identify the things that truly matter and taught me not to waste any of the time I had left to live. I grew up fast, never quite fitting in with my peers, preferring to spend weekends reading and writing. In college when my classmates were partying, I was working or studying to earn three degrees in three years. A few years later I earned my first master’s degree. I’ve run three marathons in the past three years including one in a snowstorm and another through a downpour. I’ve traveled to four different countries, taken a 9,000 mile road trip by myself, visited 32 states and lived in three. I’ve moved around a lot—twice changing my address four times in a six-month period. I’ve left everything—friends, family, job, apartment, community, and material possessions—and gone to a city I’d seen only in pictures to start my life over in a place where no one knew my name. I’ve been married and divorced, had a career and quit. Work for me instead of ruling my days has become a way for me to make money so I can continue to do the things I love. Someday I’d like to marry again and dream of having a daughter of my own who I hope will cherish life as much as I have whether or not her kidneys carry my genes.
Although being born with a disease taught me to value the time I do have to live, I’m glad to let go of the idea that life will be short-lived. In truth, none of us knows when we will die. Sometimes healthy people go suddenly and tragically and sometimes the sick go on living lives labeled miracles. We really never know. The important thing is to know what truly matters to you and to avoid putting it off for another day, another year, another life. The only time we have is now. It’s your choice whether or not you’ll live before you die.
