LONGER THAT EXPECTED: ADULTHOOD AFTER LIFE-THREATENING CHILDHOOD ILLNESS
A Wising Up Anthology
I. I KNOW WHAT STORY I'M LIVING
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.
CARMELA CARUSO left behind a too-full life: living just outside of Boston, teaching high school English, and collecting degrees and certifications like river stones, for a simpler life with more time to write among the mountains of western North Carolina. Her work has been published in The Cimarron Review, The Watermark, and Elephant Journal.
What kinds of misperceptions do people have about the kind of illness you had?
I would say the most common misperception is that kidney disease only affects the elderly. I’ll admit that when I turned 18 and started to see an adult nephrologist I felt that way too—everyone else in the waiting room was well past the age of retirement and looked to me like I was a care taker accompanying someone else. Once, when I was going in for a medical procedure to diagnose a lump I’d developed in my breast, a nurse glossed over the initial questions, saying, “You don’t have kidney disease,” checking the box and moving down the list. When I told her I did have a kidney disease and mentioned my creatine levels she was shocked. She thought for sure I had the levels wrong and left me alone in the room to go check my chart. She came back a short while later to apologize.
The truth is kidney disease can affect anyone and because the signs often go unnoticed until someone has reached the final stages of the disease, many people live with it for years without realizing it.
What do people misunderstand about your own experience of your illness?
Growing up I wasn’t allowed to tell anyone that I had Polycystic Kidney Disease. My parents made it a rule in part because they were afraid I would be treated differently. In many ways, they were right.
I still notice it today when I tell someone about my disease for the first time. They get a look of pity or sympathy in their eyes and act as if I’m a piece of china teetering on the edge of a shelf, about to fall and shatter any second. I lead a very active life—running marathons, lifting weights at the gym, doing yoga. I spent over a year in Muay Thai (kickboxing) classes, the only woman with men who were training to be fighters. Trainers express shock when I tell them how “unhealthy” I really am. I think a common misunderstanding is that I should be taking things easy or protecting myself in some way.
I don’t want sympathy and I don’t take my illness as a personal tragedy. There’s nothing to feel sorry for. If anything I’d want people to be grateful that being born with a disease has taught me so much about living.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
I’ve learned that my inner strength is the most powerful resource that I have. It wasn’t easy being hospitalized at seven, kept out of school, and unable to do all the things kids my age were doing. Going through an experience like that at a young age taught me endurance. Today I am fiercely independent and take pride in my strength.
What is a question that you would like people to ask you about your experience that they rarely do?
I would like people to ask me what good has come from being born with a kidney disease. So often in our culture we focus on the bad, we perpetuate the victim mentality. The usual story--I was born with a disease, I became very sick when I was a child, I missed out on a lot of things, I will have to go through dialysis someday—is really depressing. Often the first thing people say when I tell them I have a kidney disease is, “It can be cured, right?” They’re already looking for a solution and it’s so hard for them to accept there isn’t one.
Being born with an incurable disease has taught me not to take life for granted. To appreciate what I have. To take risks that I might not otherwise. To focus on the things that are really important to me. To give thanks for each day I’ve lived. That’s a much better story than “I was born with an incurable disease and will probably die sooner than most people.” There’s no room for good in that.
How has your experience of life-challenging illness at an early age changed your own understanding of what it means to be an adult?
This decade—living in my 30s—has been the most powerful of my life because from a young age I thought 34 was going to be the end. The past few years have been a celebration of life. I’ve given up my career, moved away from the place I lived for most of my life, and started to live simply. I have a job that provides me with just enough to get by. I never take work home with me and the work that I do isn’t mentally or emotionally taxing. Being an adult to me doesn’t mean making work the center of my life. It doesn’t mean having a serious, business-like approach to everything. It means having the time to do what I love before it’s too late.
Has your illness affected how your view God?
Faith for me has been accidental and unrelated to my illness. For a decade, starting when I was a teenager, I declared myself an atheist. After a spontaneous spiritual experience in my early 20s, I started studying different religions and weaving bits of each into my personal practice and understanding.
I think sometimes when given a diagnosis people tend to blame or question God—why me? How could you do this? I tend to thank God—for the days I’ve been granted to live, for teaching me to value life, for putting death into perspective at such a young age. I think I would be leading a very different life now if I hadn’t been diagnosed with an illness at such a young age. I’d probably put off the things that bring me joy for the things that I’m expected to do.
What advice would you give to someone else with your illness or another life-threatening illness?
Keep going and don’t believe everything that doctors tell you. Don’t get me wrong, doctors know a lot about things I can’t even begin to comprehend, but they don’t know everything. Each person is different and each body reacts differently to disease. I think there’s so much more than just biology that affects the progression of illness in individuals. I think that sometimes personal choice and mental attitude can have a significant bearing on how one is affected and how long one lives.